Professor Kaier, you are a most lovable person and brave to boot. Do what you feel is best for you to live your life, as you apparently have done for many years. Keep it up, no matter what! HUG!
7
Uneducated citizens. I spend WAY too much time explaining “Leprosy” (Hansen’s Disease--it’s sprung back yp with the re-bot of “Ben-Hur.”) No people’s hands don’t fall off! etc. Neurofibromatosis? Google it--
The NY Times had its first article in a series on disability--what comments did the Times publish? Gaming the system! “I’m a white NORMAL person--where’s my special website??” Hatred. Misunderstanding. “Disability Pride!”
It’s all utterly ridiculous. Just what does that word even mean? If you are a quadriplegic and can work, are you “disabled?”
Does “Depression” count? Or is that just a “character fault?” a weakness?
Comments range from “Get over yourself! Go to the gym! Other people have it worse than you!!”
Chronic pain? “Drug abusers--just seeking opiates!” Fibromyalgia? “Doesn’t exist--weak women!”
As an MD who is 100% disabled I am very tired of disability in a “public forum” that allows uneducated, hateful people to comment. I can’t count the number of times I have been denied access to a restaurant--to a sports bar!-because I have a well trained, obedient quiet service dog in a vest and harness. “We don’t allow dirty dogs in here! What’s wrong with you anyway?”
Sure it’s illegal to ask, but I answer-“TBI and PTSD.” Oh sure--just an excuse to get your dog in here!”
On an airplane-“OOH you’re so LUCKY to get to bring your ‘pet’ with you!” Well actually he’s a seizure dog and....
I have become a recluse--sheer ignorance and superior attitudes.
The NY Times had its first article in a series on disability--what comments did the Times publish? Gaming the system! “I’m a white NORMAL person--where’s my special website??” Hatred. Misunderstanding. “Disability Pride!”
It’s all utterly ridiculous. Just what does that word even mean? If you are a quadriplegic and can work, are you “disabled?”
Does “Depression” count? Or is that just a “character fault?” a weakness?
Comments range from “Get over yourself! Go to the gym! Other people have it worse than you!!”
Chronic pain? “Drug abusers--just seeking opiates!” Fibromyalgia? “Doesn’t exist--weak women!”
As an MD who is 100% disabled I am very tired of disability in a “public forum” that allows uneducated, hateful people to comment. I can’t count the number of times I have been denied access to a restaurant--to a sports bar!-because I have a well trained, obedient quiet service dog in a vest and harness. “We don’t allow dirty dogs in here! What’s wrong with you anyway?”
Sure it’s illegal to ask, but I answer-“TBI and PTSD.” Oh sure--just an excuse to get your dog in here!”
On an airplane-“OOH you’re so LUCKY to get to bring your ‘pet’ with you!” Well actually he’s a seizure dog and....
I have become a recluse--sheer ignorance and superior attitudes.
20
My goodness...I read this and all I could think of was how beautiful you are to be able to feel and write about such important things.
6
Honest and beautiful.
6
This is a fascinating and very worthwhile series on the whole issue of what a disability is. This particular story focuses on a disability that happens to be bothersome to those who come into contact with the author, but it is also a disability that fortunately allows her to get around, go to school, and work at a job.
One of the most frightening events that have impacted a disabled person in recent times was the police shooting recently where a deaf man was killed by a police officer. That officer obviously lacked the training or background to recognize that there may be something different with this particular individual that he pulled over. While some folks may look different but can function in a more normal fashion, others, like the deaf fellow in the shooting incident, had a serious disability, but the officer missed it entirely.
Disability awareness is the thing. We have come a long way but the challenges are still there.
One of the most frightening events that have impacted a disabled person in recent times was the police shooting recently where a deaf man was killed by a police officer. That officer obviously lacked the training or background to recognize that there may be something different with this particular individual that he pulled over. While some folks may look different but can function in a more normal fashion, others, like the deaf fellow in the shooting incident, had a serious disability, but the officer missed it entirely.
Disability awareness is the thing. We have come a long way but the challenges are still there.
7
That article brought me back to my childhood when I had a skin condition which resulted in small growths on my face. I was separated from the other children in my early grade classes and put at the side of the room. The teachers had been assured it was not contagious but that did not stop them from humiliating me. Finally mom found an excellent dermatologist who, unlike others, did not try to burn them off or use radiation but knew exactly what to do and removed them with a scalpel. The disease was ended but not the huge feelings of shame which persist even into my seventies. I simply never feel like I'm okay.
13
The "starers" and the insensitive comments are deplorable and understandably hurtful. But as someone who has been lucky enough to be spared a visible affliction but occasionally encounters someone with one, how should I behave? I have read that afflicted persons also feel slighted when people do NOT look at them, when they look away, pretend they aren't there. So at what point does looking at someone with an outward affliction turn into an unwelcome stare? A CNA at my mother's nursing home has a terribly disfigured face, with one bulging eye hanging down next to her nose. Whenever I encounter her I smile and say hello, and she is the one who looks away. Should I not say hello? It' so hard to know what to do.
8
Thank you, Anne.
The world deserves to hear your story upfront and personal and live on stage.
I hope someone makes that offer to you and you accept it.
You are a teacher, indeed.
The world deserves to hear your story upfront and personal and live on stage.
I hope someone makes that offer to you and you accept it.
You are a teacher, indeed.
9
Thank you for essay. I admire you, and am inspired by you. Congratulations on making a gregarious and fulfilling life.
3
thank you, anne, for this beautifully written, evocative essay.
5
You sound like a wonderful, thoughtful person. We need more of that.
I will remember your writing. Sending best thoughts from other side of the country.
I will remember your writing. Sending best thoughts from other side of the country.
3
My son is 5 years old. I fear other children, but I don't blame them. In school we hail curiosity as the pathway to discovery...and even breakthroughs in science began with curiosity. Yes, on a good day I'm the educator. Telling them how people are unique and everybody is different. Then there are those days when I see the kids approaching and I just wisk my son away. I swoop down as rescuing him from the jaws of an animal. I want it to stop, but it will never stop. This will be my son's reality.
I'm not where I need to be for my son...not yet. It's still not "ok" that my son was born this way. I still agonize over the unanswered question of "WHY!!" It wasn't supposed to be this way. The fight to help the world understand seems so futile.
I'm not where I need to be for my son...not yet. It's still not "ok" that my son was born this way. I still agonize over the unanswered question of "WHY!!" It wasn't supposed to be this way. The fight to help the world understand seems so futile.
7
While there are things the world will never understand, letting each person be him/herself will take us a long way toward a better future. Diversity IS our strength.
3
I EMPATHIZE With Anne Kaler. In the 50s it was not cool to be fat. So no kids on the block wanted to play with me. Then in second grade I developed a rash on my toes for which the dermatologist prescribed a medication and insisted that my parents cut the toes out of my shoes so the skin could heal. Horrified, I pleaded with my parents to let me wear sandals, but the doctor said cut the shoes. So cut the shoes it was. I was so ashamed that I stood by the fence with my toes pointing outward so nobody would see. Nobody saw or cared, actually. As a psychologist, I've worked with a few patients who struggled with ichthyosis. But they were kids, and did not verbalize any feelings about their condition. My realization that we're all different has helped me to deal with who I am--still overweight, with dermatitis. I don't know that my safety valve will work for anyone else, but I hope that Anne Kaier find the information helpful. We're all different! Wear a pin. Wear a Tee. The fact is that such a statement is a double bind, because the both people focus on their differences, not just one person in the conversation. It's not a magic bullet. But it's something of a refuge for me.
6
Obesity is not a disability in the sense that you actually can change the outcome.
4
Never lose sight of the fact that everyone you encounter either is hiding a secret, or suffering some sort of hardship. Treat all with the same sort of respect with which you would like to be treated. If you do, likely you will be. Doing so should bring out the best in others, rather than the worst.
As a result of a rare blood and bone cancer, I am handicapped. Neuropathy, a function of the disease, has impaired my balance and gait. But, two years ago, I needed a wheelchair. Since then, I have progressed from the chair to a walker to a cane, now to nothing. I'm not the smoothest, or the best dancer, but I never was. The main thing is that I've made progress, which continues. I'm blessed. The cancer is in remission, and I'm mobile...a bit clumsy, mahbe, but better. If someone asks "What's wrong with you?" I simply tell them "I'm better than I was." That usually does the trick, without going into details.
As a result of a rare blood and bone cancer, I am handicapped. Neuropathy, a function of the disease, has impaired my balance and gait. But, two years ago, I needed a wheelchair. Since then, I have progressed from the chair to a walker to a cane, now to nothing. I'm not the smoothest, or the best dancer, but I never was. The main thing is that I've made progress, which continues. I'm blessed. The cancer is in remission, and I'm mobile...a bit clumsy, mahbe, but better. If someone asks "What's wrong with you?" I simply tell them "I'm better than I was." That usually does the trick, without going into details.
9
We live in a culture where appearance, attractiveness, is paramount. It's not just rare conditions but a severe lingering acne condition at the vital time of puberty can leave scars much deeper than the skin.
Not that long ago, a feature of every country fair and circus was the freak show, where those with congenital deformations lived out their life and sustained themselves by offering a glimpse of what those who were "normal" were not. Within the group, there was affection and comradery, as their strange appearance was transcended by their humanity.
Ms. Kaier is fortunate to have friends and a social life that is beyond the stares of strangers. Many are not, and live a life of isolation.
Not that long ago, a feature of every country fair and circus was the freak show, where those with congenital deformations lived out their life and sustained themselves by offering a glimpse of what those who were "normal" were not. Within the group, there was affection and comradery, as their strange appearance was transcended by their humanity.
Ms. Kaier is fortunate to have friends and a social life that is beyond the stares of strangers. Many are not, and live a life of isolation.
6
Hopefully, research using viruses with modified genes that will affect the entire body will bring a new life to all suffering from genetic difficulties by replacing and repairing the genes responsible for the ailments.
4
A touching story that is a must read for every citizen.
2
If you are worried about society valuing the individual despite what they look like, your top method is organized religion. People in church are still people, but that place teaches people to make allowances.
Political correctness, perhaps another faith in itself, tries to make room for the people with an unusual appearance, but the results are very spotty.
P.C. doesn't value or look for the values in each individual because its emphasis is on judging the non-P.C. offender.
As the religious Rev. Dr. Martin Luther King, Jr. said, we have to judge the inner character of people, not their outside. (Even if the last two Presidential elections totally overlooked that.)
Political correctness, perhaps another faith in itself, tries to make room for the people with an unusual appearance, but the results are very spotty.
P.C. doesn't value or look for the values in each individual because its emphasis is on judging the non-P.C. offender.
As the religious Rev. Dr. Martin Luther King, Jr. said, we have to judge the inner character of people, not their outside. (Even if the last two Presidential elections totally overlooked that.)
1
Exclusivity and intolerance are the very base of organized religion.
8
Very gracefully written and quite thought provoking. Thank you.
2
Thank you so much for sharing your life.
I am almost completely blind and I could not see your face or body. And I know that there are so many worse off than myself. This is part of the stiff upper lip mentality we are supposed to have with our struggles and 'challenges. We are supposed to be strong and resilient, but we are also human with all the baggage and suffering that entails and perhaps part of our strength may be just to have the courage to look that suffering in the eye.
We all have our personal blindness, but in our society that is not acknowledged as a disability though it really does hold us back in many ways we do not understand. Of course none of this makes much difference when sometimes all you can do is seek the safety of your bed, smell a flower or watch the clouds go by if only in your imagination.
I am almost completely blind and I could not see your face or body. And I know that there are so many worse off than myself. This is part of the stiff upper lip mentality we are supposed to have with our struggles and 'challenges. We are supposed to be strong and resilient, but we are also human with all the baggage and suffering that entails and perhaps part of our strength may be just to have the courage to look that suffering in the eye.
We all have our personal blindness, but in our society that is not acknowledged as a disability though it really does hold us back in many ways we do not understand. Of course none of this makes much difference when sometimes all you can do is seek the safety of your bed, smell a flower or watch the clouds go by if only in your imagination.
11
Thank you for this piece and your candor in describing what it's like to deal with people's reactions to disability. I have a more "conventional" disability: A spinal cord injury that left me partially paralyzed. I walk with canes - or a walker - and wear lower leg braces. People may not worry about "catching" what I have, but so often I'm reminded that I look different - and not in a good way.
Your experience of having to walk through a place filled with people who may stare at you or ask questions that are none of their business really resonated with me. It's happened more times than I can remember in the 45 years I've had a disability.
And I've never found a satisfactory response that I was willing to deliver over and over and over again - nor do I think I should be obliged to explain myself. And even trying to explain that much to (or otherwise dissuade) a persistent questioner too often ends with them trying to make me feel as if I'm the one who's being rude.
I love your garden and can relate to the solace it brings you. When my husband died, and I sold our house, I looked for condo with a balcony so I could have my own outdoor oasis. It helps, but it would be nice if the rest of the world were more pleasant to navigate.
Your experience of having to walk through a place filled with people who may stare at you or ask questions that are none of their business really resonated with me. It's happened more times than I can remember in the 45 years I've had a disability.
And I've never found a satisfactory response that I was willing to deliver over and over and over again - nor do I think I should be obliged to explain myself. And even trying to explain that much to (or otherwise dissuade) a persistent questioner too often ends with them trying to make me feel as if I'm the one who's being rude.
I love your garden and can relate to the solace it brings you. When my husband died, and I sold our house, I looked for condo with a balcony so I could have my own outdoor oasis. It helps, but it would be nice if the rest of the world were more pleasant to navigate.
14
Thank you for this beautiful, insightful, moving piece! It resonates for me because I'm visibly -- maybe audibly is more to the point -- transgender. Most of the time, it doesn't seem people are staring at me, and being white and professional-class insulates me from a lot of the abuse many of my sisters are subjected to. But every once in a while someone misgenders me and I find myself wanting to hide. When I first transitioned, I went through life pretending that everyone was OK, mentally expecting -- and prepared for -- some bad reactions. But these days my guard is down and so when something happens, it knocks me off balance.
8
During my elementary school yesrs, my parents had a live-in "mother's helper" who lived with ichthyosis. I had nine siblings. Most people familiar with my family assumed that my mother needed Dorothy to assist with cleaning, cooking and baby-sitting. To me, Dorothy was an important role-model for caring and kindness. She could not save me from my abusive parents, but she probably was the most important person in my life while I was struggling with juvenile depression and anxiety. I have always considered disfigured people to be people who are potentially good and strong and valuable members of whatever group that is willing to let them in.
14
Ms. Kaier:
by sharing these revelations of yourself with us,
you have immeasurably instructed, informed and enriched all of our lives.
thank you for being you.
9
My mother would've kicked the snot out of me if I'd ever had the gall to stare at someone with a disability. What's wrong with parents today?! It's never ok to stare. It's never ok to ask, "What's wrong with you?" I feel tremendous sympathy for the author, and hope that she can come to realize that insensitive comments are less about her and much more about the lack of common decency on the part of the starer or commenter.
17
I tend to agree with you wholeheartedly. However, I recently watched an old episode of Jon Favreau's TV show on IFC, "Dinner For Five," in which Peter Dinklage was one of the guests. Dinklage talked about how he was not offended when children stared at him or asked why he was so small. He considered it to be an expression of their natural curiosity, which he thought should be encouraged rather than repressed. Certainly, by the time one is an adult, there is either a tactful, empathetic way to ask "what is wrong with you?" or one should not ask it at all.
4
Thank you for sharing your feelings and thoughts. It made me consider how we know another person on first meeting other than what we may see, and how we see another person apart from the feelings - joyful and hurtful - that have affected and shaped our own lives. I try to master my own feelings-often, but not always successfully- so as to respond kindly and thoughtfully to others in my life and to those I may meet. It is an ongoing challenge.
2
I have been a professional working with people with various mental and physical disabilities for over half a century. This story is like numerous ones that i heard. However, we have to look behind the immediate emotional reactions. On one hand, it is common for people to react with a degree of fear when seeing a person who looks very unusual especially if this might raise a question of contagion. In fact, most swimming pools regulations mention that people with a rash should not use the pool. However, most people have not received from their parents good education in politeness towards others even if they look different.
On the other hand, yes, educating others about one's condition is the right way to go. One may become fed up doing it every day, but one should be aware that the "fed up" feeling may be an expression of anger for having the condition in the first place.
On the other hand, yes, educating others about one's condition is the right way to go. One may become fed up doing it every day, but one should be aware that the "fed up" feeling may be an expression of anger for having the condition in the first place.
2
Perhaps she should try out stem cell therapy to see if there is a cure down that avenue. Master stem cells have a life span of 130 years, unlike other cells in human bodies. The idiot Bush blocked stem cell research on religious grounds and that let other countries get far ahead of us. Of course, the dog doo insurance companies are not going to pay for stem cell therapy. A doctor needs to be seen who specializes in stem cell therapy and is up to date on this. I have read where a 68 year old American went to Germany for stem cell therapy to cure his type 2 diabetes. Not only did that diabetes vastly improve, but the stem cells coincidentally cured his heart disease. Maybe something wonderful will happen and that area and a doctor with a good soul will do her for free to relieve her isolation and mental suffering.
4
Um, did she ask for a cure? And it seems to me that she is saying that her suffering was caused by SOCIAL interactions. Please don't hijack this beautiful article with this tangent that is not even respectful to the article.
4
Huge courage and intelligence. Makes me ashamed of my petty burdens.
4
Beautiful.
3
You are a beautiful and moving writer. Thank you so much for showing us your prose. I am glad that both you and your writing have the strength to enter the public sphere: you make it a richer, more humane place.
7
Thank you for reminding me (and the rest of the readers) about self love. I have subcutaneous melanoma on the left side of my face and neck…very visible and sometimes blue…as well as an indentation from removal of my left temporal muscle where the melanoma originated. Also because of therapies, I have developed full body, obvious vitiligo which is sometimes more difficult to handle in public than the lumps, bumps, dents and scars from melanoma. I have been stared at, “glimpsed at”, and looked at sideways by folks and some days I rise up and claim my space in this world and some times I just don’t have enough emotional fuel to apply my cover up make up, fix my hair just right, and go out in the world and make believe I’m not sensitive to the stares…but you are so right.. people really aren’t looking at me anyway. And btw…I am a working musician and vocalist and for some reason…when I get up to on stage to perform…I never worry about people seeing my disease…go figure...
7
Whether our pains are internal, external, or both it is amazing how healing a garden can be. Thank you for sharing your story.
4
That you are able to find peace is what I, as another person with a disability, see as critical.
My experience however is the opposite of yours. People cannot "see" my disability. Mine affects my autonomic function, and the fall and head injury that resulted in an inability to work, socialize, take long walks, or have a dog as I once did, I live with daily.
I find my peace by trying to make sure that the corporate negligence and lack of accountability is remedied, made accountable, and most importantly is known to others so that they can protect themselves, until those actions take place.
I have a petition on change.org that explains how the fall affected me, and each signature lets me know that at least one more person will have the knowledge that I didn't.
Living with a disability is like having a job 24hrs a day; but working to prevent one feels more like your secret garden, your book, and your clouds.
http://chn.ge/1fhM4si
My experience however is the opposite of yours. People cannot "see" my disability. Mine affects my autonomic function, and the fall and head injury that resulted in an inability to work, socialize, take long walks, or have a dog as I once did, I live with daily.
I find my peace by trying to make sure that the corporate negligence and lack of accountability is remedied, made accountable, and most importantly is known to others so that they can protect themselves, until those actions take place.
I have a petition on change.org that explains how the fall affected me, and each signature lets me know that at least one more person will have the knowledge that I didn't.
Living with a disability is like having a job 24hrs a day; but working to prevent one feels more like your secret garden, your book, and your clouds.
http://chn.ge/1fhM4si
5
It has to be even more difficult for you, being female. Recent "headline" news of Alicia Keys actually showing up on Television without make-up...freckles showing, and she found it a difficult choice...that this is News shows how the pressure of perfection touches every woman. I'm so glad you have your garden.
5
pople stare because they are curious, you would stare if someone walked by with something going on that you weren't familiar with- its human nature. what happens after the stare is a different story. its not the consul;act - its how the conflict is dealt with. education is a big step. you have to realize that people aren't used to another human with "scales" and int might seem- well, out of the ordinary - ok, then next question is - will it affect me? if the answer is no then ok, enlighten me. sorry, thats the world. its not cruel, only curious.
1
Anne, did you know sometimes a cliche is right as rain? So, here it is: You're beautiful on the inside. There, I said it.
2
It really amazes me how people act towards others. I was in the hospital in a wheelchair once and a couple got onto the elevator with me. They looked at me with horror on their faces! It was so blatant. I thought to myself, "This must be what's it's like for handicapped people." I was so happy this was temporary, but I never forgot it. How can people be so rude? I can't imagine what it must be like to have something like this. People are so inconsiderate!
1
Tell them it's contagious (but that it will take several months to appear). It will serve them right.
6
Thank you for this lovely and vulnerable article. Your students are lucky to have you!
4
I commend Ms. Kaier for her courage and the NYT for printing the article. I am also glad that the writer doe not suffer physical pain from her condition. Forgive the platitude that beauty is only skin deep but the reason it's a cliche is because it's true. The inner state of our being is a far more salient factor for success in life than outward appearance. Ms Kaier has had this this success and from the sound of it the care of a loving mother, so all things considered , unless there's more she's not telling us she's ahead of the game. It would interest me to read more about how she overcame the obstacle of her disorder to gain her professional and social achievements.
The new checkout lady she refers to was clearly rude and insensitive in her comment and its tone. However it is understandable that people are and should be protective of their well being and to that end will avoid anything or anyone that looks infectious. This is neither personal insult nor discriminatory. While it is a bother and burden Ms Kaier needs to be prepared to explain the medical facts of her condition to those she comes into contact with. If she understood 'where they're coming from' and accepted it as rational it might bring her additional inner peace.
The new checkout lady she refers to was clearly rude and insensitive in her comment and its tone. However it is understandable that people are and should be protective of their well being and to that end will avoid anything or anyone that looks infectious. This is neither personal insult nor discriminatory. While it is a bother and burden Ms Kaier needs to be prepared to explain the medical facts of her condition to those she comes into contact with. If she understood 'where they're coming from' and accepted it as rational it might bring her additional inner peace.
2
I think that to the extent that people's confidence level gets affected by the reactions of those around them, it can be much harder for a plain looking person to have the kind of poise and charisma as someone who has been admired since birth.
4
Thanks for this inspiring, honest essay.
2
Thank you for being brave, smart and generous, sharing your story and your feelings. You are a good teacher and we have much to learn!
2
The world bases much of its assumptions on beauty, we see it all around us.
Better looking man get better prices, have better jobs, move up the ladder quicker and are generally more sought after than their less handsome counterparts.
It's sad, but it really shouldn't be news to anyone, certainly not anybody reading this paper. Beauty is what matters in this life, that and money.
Better looking man get better prices, have better jobs, move up the ladder quicker and are generally more sought after than their less handsome counterparts.
It's sad, but it really shouldn't be news to anyone, certainly not anybody reading this paper. Beauty is what matters in this life, that and money.
1
Lookism is rampant and is the predominant form of discrimination, and is a component of racism. We seem to have accepted it as inevitable. It is so innate, it is rarely considered a character flaw.
3
We are a video learning and entertainment culture now, not a literary culture. People with a 2-second attention span can't adjust quickly enough not to judge people with these medical conditions.
I'm not sure if it has anything to do with short attention spans. People have always placed a high premium on beauty, but nowadays there seems to be no shame in being completely superficial. Female comedians like Joan Rivers joked about it, but was completely obsessed with her own appearance and did everything she could to alter it. We are unwilling to admit and do anything about the bias in favoring beauty.
3
A wonderful essay. There is a "helpful arc" - not a happy-ever-after ending, but one more helpful, that shows the Anne Kaier's ability to muster up enough ordinary sweetness in life to counter the infuriating experiences of daily life for someone who merely "looks different." Hiding - isolating yourself - is so much a part of depression - both consequence and precursor - that developing strength to maintain a public identity is vital to living a full life.
Thank you for a glimpse of this from your point of view
Thank you for a glimpse of this from your point of view
18
There is a man who shops at our local grocery only late at night. He was blown up in Iraq. He lost his left arm, but more striking are the three deep, angry red slashes across his face and head, that look like they should still be bleeding. And his missing ear of course.
Nobody thinks they'll get it from him. Most of us have sympathy. Most would "thank him for his service." But he still shops only when people won't see him.
It is painful to be stared at. With some things, shock is at first so strong we just do stare.
Nobody thinks they'll get it from him. Most of us have sympathy. Most would "thank him for his service." But he still shops only when people won't see him.
It is painful to be stared at. With some things, shock is at first so strong we just do stare.
19
That comment about genetic fitness that the author of the article read was a gross oversimplification. In addition it entirely ignores the fact that modern civilization is not and should not be Darwinian. In fact cooperation has led us to be successful as a species. We all have strengths and weaknesses, good genes and bad ..some expressed and some not. What about traits such as eloquence decency and humanity? What about intelligence? Inginuity? These are more complex than single gene traits and hard to measure. These are the complexities that make life beautiful and everyone valuable.
25
Not only do people make rude comments towards people whose appearance is very different----they also make comments about little flaws, like looking tired or having some wrinkles. "Hey! You look EXHAUSTED!!! Are you OKAAAYYYY????" Yes, I'm fine. This is how a middle aged woman often looks even after a good night's sleep. Now please go enroll yourself in charm school.
42
Looking carefully (staring) at something unusual is part of human nature. It doesn't necessarily equate to fear. People just want to be sure they are actually seeing what they think they are seeing, so they can decide if it is something they need to be concerned with. Even babies do this -- researchers will measure how long babies look at novel objects and situations, and use this as a window into their otherwise incommunicative minds.
Obviously it can slide into rudeness, but it is never going to stop entirely, so the question is how do you react to it. It doesn't seem very useful to be upset about it your whole life! While the author's feelings are not difficult to understand, I imagine there must also be people who look strange for one reason or another but who think about it differently, who think "of course they are looking at me, I'm strange looking," and just accept it as a normal and unremarkable part of their life. If on some unfortunate day circumstances were to render me strange looking, that would be the attitude I would strive for.
Obviously it can slide into rudeness, but it is never going to stop entirely, so the question is how do you react to it. It doesn't seem very useful to be upset about it your whole life! While the author's feelings are not difficult to understand, I imagine there must also be people who look strange for one reason or another but who think about it differently, who think "of course they are looking at me, I'm strange looking," and just accept it as a normal and unremarkable part of their life. If on some unfortunate day circumstances were to render me strange looking, that would be the attitude I would strive for.
8
I think her reaction is perfect. At times she educates and at times she hides depending on the day. Unless you are "strange looking," you have no idea what it's like. I do strive for to make my deformities a "normal" part of my life but then someone comes along and knocks the wind out of my sails. Just because it takes me (and the author) some time to regroup doesn't mean we're not coping well.
3
Please, John; it is unlikely that you will ever have to walk in her shoes.
4
I agree and also see it in context of that most primitive need for early human survival. Be observant or be eaten. What's different could be harmful, but maybe not. I never take it personally when someone stares at my bald head. And who knew the follow-up from total strangers would often be, "Wow, what a perfectly shaped head!" Who knew!
1
Ignorance is no excuse. What is so troubling is the cashier's absence of empathy laced with cruelty and mockery. She sounds like one of those miserable people who dumps her own misery on others. People like her make me want to apologize for the human race. But then there are good people like yourself who more than make up for the meanness in the world.
16
Oh how our conditions shape us. I believe your story resonates with almost everyone who feels as if they are viewed as different. And after a while one just doesn't want to be viewed at all. Sometimes we grow stronger as we deal with these issues - independence comes to mind. Sometimes we just want to hide.
My experiences can't compare to yours, Anne. But I can feel the angst in your story in a way that most folks can't. Thank you for reminding me of how I was shaped. It's important for some of us to remember as we delude ourselves as to our "normalcy". I was the kid who whose body was covered with eczema - raw, red, oozing and scabby. By the time I had outgrown the worst of that (so grateful) I had contracted polio and found myself wearing a leather and metal leg brace. After years of being stared at, I think I became numb to it....no, probably not. My Dad asked me if I wanted to play on the Little League team he was coaching. He meant well. He wanted me to feel normal. But seriously?
Thank you for writing this. It was beautiful and powerful.
My experiences can't compare to yours, Anne. But I can feel the angst in your story in a way that most folks can't. Thank you for reminding me of how I was shaped. It's important for some of us to remember as we delude ourselves as to our "normalcy". I was the kid who whose body was covered with eczema - raw, red, oozing and scabby. By the time I had outgrown the worst of that (so grateful) I had contracted polio and found myself wearing a leather and metal leg brace. After years of being stared at, I think I became numb to it....no, probably not. My Dad asked me if I wanted to play on the Little League team he was coaching. He meant well. He wanted me to feel normal. But seriously?
Thank you for writing this. It was beautiful and powerful.
53
My late aunt suffered from a skin problem similar to this author's. It was often quite painful in that she itched and would finally scratch herself, making the problem worse.
Since she lived in a very small town, everyone over time became aware of her problem and commiserated with her instead of avoiding her. After reading this article, I think of how lucky my aunt was to have such understanding people around her.
This writer's ability to find solace in her garden is a wonderful thing. She is courageous in more ways than many of us who have no obvious problems.
Since she lived in a very small town, everyone over time became aware of her problem and commiserated with her instead of avoiding her. After reading this article, I think of how lucky my aunt was to have such understanding people around her.
This writer's ability to find solace in her garden is a wonderful thing. She is courageous in more ways than many of us who have no obvious problems.
22
As the mother of an Autistic son I can relate easily with the feeling of being stared at and practically shunned whenever people encountered us and observed his strange behaviors as a young child, and wanting to isolate from society. This piece touched me deeply on that score alone, but more for the strength and determination of the author to find joy in simple ways. Through years of hard work my son is faring quite well today at age 51, but the memory of the tough years stay with me still and inspires me in small and large ways to advocate and advance knowledge about differences in people and the importance of acceptance of any and all life, human or other. The garden was a refuge for me also and is still today and interestingly my boy/man is very taken with the natural world too. In the end what is important to get through hard times is acceptance and faith and, very importantly, personal integrity and determination.
41
My 53 year old brother is autistic. Our family lived through many of the same things you and your son did. The parents and others who walked away from us or refused to acknowledge our existence because of my brother's strange behaviors. The people who offered free advice on how they would deal with such a "spoiled child". The extended family members who blamed one of the parents depending upon which side of the family they were from. The village we live in who, to this day, continues to treat handicapped people like trash.
My brother and I are a strong unit. We bird together, giggle together, and console each other. We supported each other when the village refused, until threatened with a lawsuit, to make an accommodation for him that was cost free and required by the ADA. What you, Anne Kaier, and many others who are handicapped or associated with handicapped people know is this: we often see the worst in people because of the handicap but sometimes we get very lucky and see the best in the most unexpected places.
My brother and I are a strong unit. We bird together, giggle together, and console each other. We supported each other when the village refused, until threatened with a lawsuit, to make an accommodation for him that was cost free and required by the ADA. What you, Anne Kaier, and many others who are handicapped or associated with handicapped people know is this: we often see the worst in people because of the handicap but sometimes we get very lucky and see the best in the most unexpected places.
11
Thank you for your reply and three cheers to you for your courage in facing adversity. As hard as it was for me and my husband as parents I know deep within me that my two other children (older daughters) bore the brunt of derision as well but like you, they are as close a unit as you are with your brother. I don't know how old you or your brother are but I will tell you that when my son was diagnosed in 1968, no one knew or understood the syndrome and the medical profession was as perplexed as we were, resulting in no help or programs. We went to work, the four of us , to develop home programs based on instinct and love for this boy while advocating and, working with our Commonwealth of MA to mandate programs through Chapter 766, the model for which Federal Public Law 1-94 was based upon, mandating individualized and equal education and treatment opportunities as for so-called 'normal' children. Today autism has gained recognition and I fear the term may become a catch-all for all manner of unrelated problems but be that as it may, finally help is available. It never ends, the trials continue with new ones cropping up all the time, but there is hope and I wish you and your family the very best. God bless you for your devotion and love.
3
Annie, he's 53 and I'm older. He was diagnosed with autism back in the day when it was not understood and had no real treatment. The only thing that there was to go around was blame and that was counterproductive because it didn't help us plan for his future, get him a decent education, or help us to help him. My parents had to fight the school system to get him mainstreamed. His intelligence wasn't the problem. It was how the other students might treat him and how his teachers would deal with that and some of his odder behaviors. Fortunately for everyone things turned out well. The only professional who was truly on our side was the psychiatrist. When the issue of phys ed came up he said that my brother exercised enough on his own and didn't need the trauma that occur in a locker room. He said that my brother's innate intelligence would help him learn to compensate and he was right. It just took him a little longer than most.
Now the biggest problem is the so-called tolerant people who are tolerant as long as they don't have to make any accommodations for a handicapped person. The way they act you'd think that we deliberately made my brother autistic in order to take advantage of the ADA. They don't realize that cute handicapped children grow into handicapped adults whose needs may diminish but probably won't vanish.
Good luck to you and your family too.
Now the biggest problem is the so-called tolerant people who are tolerant as long as they don't have to make any accommodations for a handicapped person. The way they act you'd think that we deliberately made my brother autistic in order to take advantage of the ADA. They don't realize that cute handicapped children grow into handicapped adults whose needs may diminish but probably won't vanish.
Good luck to you and your family too.
1
From what you write, I think we must live in the same neighborhood of Philadelphia. I've found it to be a generally accepting place, where all kinds of people live together without a lot of friction. Still, living in the middle of a big city can dull one to the strangers who so constantly walk by on the street. Your writing reminds me to have greater appreciation for others and their travails, to be more considerate, to have more compassion. Thank you.
14
Thank you for sharing such a beautiful piece. I have severely deformed hands and have been scrutinized relentlessly since I was a baby. You have captured how I feel exactly.
19
I wish that I could say that I was one of those people who doesn't stare. I've tried to change my habits by offering a smile instead.
9
When you see someone who suffers from a condition beyond their control, show more compassion. Christ and the prophets who preceded or succeeded him didn't say anything about rationing love according to appearances.
5
its true. My dreadlocks were termed as "bazaar" by the sheltered Nabisco Cracker of a Therapist I had a few years ago. My appearance had a more important roll in my Mental Health Diagnosis then the actual state of my Mental Health. Coffee doesnt do any favors for the thought process, or testosterone levels for that matter.
2
Probably meant "bizarre".
Thank you for this moving story of your life - allowing us to see through your eyes how others might see you - how others sometimes do reveal their ignorance directly to you. You are a treasure! A Living International Treasure!
6
Unfortunately evolution doesn't seemed to have selected out certain strains of stupidity and bias - or fear of difference. It must require special courage to live day to day confronted by this - and I'm not sure a "moral courage" gene comes with the rest ... bravo to you for developing it in yourself, and for sharing your experience through this article.
49
My wife has "invisible" disabilities. Bipolar disorder, diabetes, kidney failure, liver dysfunction, degenerative disc disease - I could truly go on and on. She is often exhausted, sickly, homebound and more. She has been unable to work for years. She does her best to explain when we are out, why she feels unwell. Why she is resting; why she may be injecting herself with a needle of insulin. It isn't easy but she sees it as that cliched "teachable moment".
3
Thank you, Ms. Kaier, for educating me about your condition. I don't know if I've ever met anyone who lives with it, but I will know it if I do and see them as the human beings that they are.
Of course, all the fear that many of us have about encountering disabling differences in others, in one way or another, is about our fear of suffering the same or similar fate. I had a sister-in-law who recently died of a terminal skin disease, similar to pemphigus vulgaris, but was never diagnosed despite the best efforts of Boston's finest dermatologists and oncologists, partly because she had been unable to prevent it going so long that there was nothing to be done to stop its progression. If it was pemphigus, no one really knows the cause of it or how to prevent it, but a contagion, again, was apparently nonexistent. And, again, no one could tell for sure what it was.
Fortunately, she had many siblings and a few friends to provide the finest support that they could possibly give, and she eventually passed peacefully under the best possible care she could have received.
Of course, all the fear that many of us have about encountering disabling differences in others, in one way or another, is about our fear of suffering the same or similar fate. I had a sister-in-law who recently died of a terminal skin disease, similar to pemphigus vulgaris, but was never diagnosed despite the best efforts of Boston's finest dermatologists and oncologists, partly because she had been unable to prevent it going so long that there was nothing to be done to stop its progression. If it was pemphigus, no one really knows the cause of it or how to prevent it, but a contagion, again, was apparently nonexistent. And, again, no one could tell for sure what it was.
Fortunately, she had many siblings and a few friends to provide the finest support that they could possibly give, and she eventually passed peacefully under the best possible care she could have received.
22
When I was in a clinic for therapy of my rheumatism, one woman undressed in the shower area with us. She had severe psoriasis and only said, "By the way, don't worry, I've gor psoriasis, am not infectious, and do I ever hate the medication against it." Her head-on approach was the best thing she could have used.
8
I have it along with eczema. I wear sleeves because during a flare up of the psoriasis my forearms are red with a white coating that flakes. The medication I use has ether in it that burns the dead skin off and has a cream that sprays out with it. For a few weeks my skin is raw and bleeding then turns a fire red. The eczema is all over my back. I am required to stay out of the sun so covering up looks weird in the summer. It at least keeps people from seeing it.
I also have calcium pyrophosphate crystal deposition in my elbows which fill with liquid making them look like I have golf ball inside them until I go to have them drained.
People do stare and covering up is just easier.
I also have calcium pyrophosphate crystal deposition in my elbows which fill with liquid making them look like I have golf ball inside them until I go to have them drained.
People do stare and covering up is just easier.
3
I haven't anything to add to the 111 responses that precede mine except to say that many of the responses speak my mind much better that I could express. Thank you Anne Kaier.
7
I always had difficulty making friends and in my 30s realized it was because I didn't understand etiquette. There were mental health issues in my childhood home, and I never learned. When I started reading up on manners a rule repeated over and over by experts was that you never comment on someone's appearance, good or bad. Just never.
15
thats the logic that allowed women to be draped w/sheets for thousands of years. I expect people to comment on how amazingly hot I am, or if I have a booger stuck to my cheek. Caffiene causes Anxiety, so if you have a deformity, your best bet is to [shun] substances that complicate your life
1
Thank you for writing this Anne Kaier. I have been thinking more of this essay while I just walked my dog, and was going to remind other readers the importance of focusing on peoples eyes while talking and interacting with them. that is where the soul really is.
Also, you essay is a strong testament to the value of a garden. When we can no longer connect to other humans, for whatever reason, a private garden space will most always soothe our soul. All the better if you have made it your own with features that touch you physically and mentally, one that catches or filters light to really touch you deeply.
Also, you essay is a strong testament to the value of a garden. When we can no longer connect to other humans, for whatever reason, a private garden space will most always soothe our soul. All the better if you have made it your own with features that touch you physically and mentally, one that catches or filters light to really touch you deeply.
10
As a young woman who uses a wheelchair, I encounter the same kinds of stares and questions almost every time I go out. The most common question I get is also, "What's wrong with you?" It took me years to understand that I am not obligated to provide an answer to that question (or any other) to random strangers on the street. My question is: what is wrong with them, that they would feel entitled to ask a personal question like that?!
29
My wife has a degree in rehabilitation and mental health counselling. She taught me that when I encounter someone in a wheelchair, that I speak to that person, and not over her to the person pushing it. I no longer depersonalize persons with disabilities, no matter what the disability may be.
No complements to me, but to my wife.
No complements to me, but to my wife.
1
Thank you for sharing! I have ichthyosis too - but a more mild form, ichthyosis vulgaris. I read the first paragraph and completely connected - the avoidance of sun, overheating, no-sweating, flaky skin, all of it. Although my skin isn't noticeably different at first glance, the scales are there and my hands are noticeably lined and dry - which makes handshakes interesting.
Just wanted to say that I loved reading about your experience and to thank you for sharing.
Just wanted to say that I loved reading about your experience and to thank you for sharing.
17
I was greatly moved by your essay. I admire your courage and strength, and am so glad that you have your garden to provide solace and rejuvenating energy.
9
Thank you for sharing this. I'm facing my second case of skin cancer, I admit I'm very frightened but reading this helps to give me some perspective.
5
Thank you for sharing!
6
One writer says, "Love is the key; love yourself and thank god every day that you have enough love for yourself to endure it all." I have some advice for people who encounter someone different. Be loving to everyone. You will profit and so will they.
6
A few thoughts on this piece. One, I usually struggle to find an authentic and demonstrably kind way to interact with people who are different or disabled in some obvious way. When I was a child and told not to stare, I learned to quickly avert my eyes when I encountered such a person. As an adult that seems weird and rude. I like the comment about meeting someone's eyes. But I think I often get it wrong.
Two, I don't think people are "jerks" for suggesting that stares might be more out of curiosity than meanness. Human beings have giant feet of clay and big staring eyes, are often at a loss for how to behave, often make mistakes. That doesn't make us all jerks. That response can stop you cold: whatever I do is wrong, so I will look away, detach and flee to safety.
Three, I believe that this life is a long game, and that all of us have someday to learn to live with acceptance, humility and grace, as all we really possess is within us, invisible. Everything else--including clear skin, straight limbs, perfect teeth--will ultimately be taken from us. The writer of this piece has a hard-won advantage over most people in that she has already learned to deal with deep suffering and still find joy in living, still find ways to be a good person. This is the kind of person I want to be around. This is why I read books. Thanks for your example.
Two, I don't think people are "jerks" for suggesting that stares might be more out of curiosity than meanness. Human beings have giant feet of clay and big staring eyes, are often at a loss for how to behave, often make mistakes. That doesn't make us all jerks. That response can stop you cold: whatever I do is wrong, so I will look away, detach and flee to safety.
Three, I believe that this life is a long game, and that all of us have someday to learn to live with acceptance, humility and grace, as all we really possess is within us, invisible. Everything else--including clear skin, straight limbs, perfect teeth--will ultimately be taken from us. The writer of this piece has a hard-won advantage over most people in that she has already learned to deal with deep suffering and still find joy in living, still find ways to be a good person. This is the kind of person I want to be around. This is why I read books. Thanks for your example.
23
You have spoken for all people who look different, including those of us who are mistaken for having cancer when we're simply unable to grow hair .... totally bald from alopecia universalis. Not everyone's a born educator. Not everyone wants to stop their day and explain, yet again, why they look different. But I believe in the benefit of unlimited do-overs. We get many chances to find just the right inflection and sound bite to diffuse the curiosity and move on with our day. In the Bald Girls Do Lunch network we have a saying " It's like raising children. You get countless chances to say the same thing countless different ways."
30
Did you know that Mike Nichols was also hairless? Good company!
2
Wish I could have interviewed Mike whose personal choice was to wear hair in public. While living well with a skin disease like alopecia universalis provides unlimited options: buy hair/wigs, leave it all off, get chic with hats, head wraps and more (especially for women), I wish I could have asked a public figure like Mike how he came to his decision, remembering that his onset was fairly young. We all know what makes us feel the most like our true self every time we step out the door. My hope is that every person with skin disease knows the options and feels free to use whichever feels right on any day ... especially if it's not the same as the choice from yesterday.
2
How about preparing a card that explains the
situation and handing it out when needed?
situation and handing it out when needed?
I frequently shop at a nearby grocery store that is one of many in family-owned chain with a history of hiring from the full, glorious diversity of humanity. "My" local store is in a very prosperous, up-scale suburb of this hip metropolis. The store employs several young people who are very different from the privileged, beautiful people who shop there. There are a number of employees who obviously have trisomy 21 (Downs) and there is a striking young woman who I think has Treacher Collins syndrome. She is always immaculately groomed; her hair is beautiful, brushed and styled; her hands are manicured; she is neatly dressed in her store uniform. She obviously has a strong sense of self-awareness, and she obviously gives special care to her appearance, yet No One Will Look at Her.
I've seen how it makes her feel when I've thanked her for sacking my groceries. I don't pity her, but I respect her courage and dignity. One day recently, I saw her working on a display. The cart filled with merchandise was pulled up close to the shelves she was stocking, and the cart and boxes created a little fortress, blocking her off from the rest of the store. I feigned a need for her help, just so I could speak to her. As I walked away, it struck me that I wanted to be acknowledged by her as much as she longed for acknowledgement from others.
It's really kind of pitiful, that we are so alienated from one another, over such meaningless differences.
I've seen how it makes her feel when I've thanked her for sacking my groceries. I don't pity her, but I respect her courage and dignity. One day recently, I saw her working on a display. The cart filled with merchandise was pulled up close to the shelves she was stocking, and the cart and boxes created a little fortress, blocking her off from the rest of the store. I feigned a need for her help, just so I could speak to her. As I walked away, it struck me that I wanted to be acknowledged by her as much as she longed for acknowledgement from others.
It's really kind of pitiful, that we are so alienated from one another, over such meaningless differences.
70
Thanking those who serve us - and looking them in the eye when we do it - would go a long way to make days lighter for everyone. I've noticed how often people's eyes are downcast as they work with the public, and how customers look at the credit card readers and scoot. We may not live in villages anymore, but we can act as if the others we meet are neighbors.
4
Beautiful! As I read, I could feel how you move through each day and how you comfort yourself. I felt uplifted by your self awareness and gentle self care. You don't need any advice on how to live your life. You are living it well.
5
You have survived and prospered. Living well is the best revenge.
I know it's often painful, but ignore the ignorant. Polite questions deserve an answer, but not your medical history. Children deserve gentle answers.
Enjoy your life. You've more than earned it.
I know it's often painful, but ignore the ignorant. Polite questions deserve an answer, but not your medical history. Children deserve gentle answers.
Enjoy your life. You've more than earned it.
5
Thank you Ann, for having the courage to share this portrayal of vulnerability and pain. The images of your garden as refuge are especially poignant. Your students are blessed in having you as a teacher, as are we who read your piece. The picture of your love for others despite enormous adversity will remain with me for a long time.
And yes as someone else has written, I hope that the NYT can publish more of your essays.
And yes as someone else has written, I hope that the NYT can publish more of your essays.
5
Dear Ms. Kaier – Thanks for such a lovely piece. I loved that line about the comfort of the “unseeing” plants and trees, and I was thrilled by the reference to Martin’s Dam. Swam there years ago with cousins from Wayne. Good for you for writing. Good for you for just putting it out there. Nicely done.
4
"Experts give high-minded advice about how to respond. When someone stares at me, I am to educate them". these experts are idiots who have obviously never had a visible disability. it is difficult enough to deal with our disability on a daily basis without having to educate (essentially to justify myself and to reassure someone that they won't 'catch ' my disability). if i have to do that with a person, then i'll conclude my explanation by asking the person to make a donation to find a cure for my disability. Let them deal with how to respond to that rather than have them express their pity for me. and btw - i would like them to stop asking me how i'm doing. that drives me nuts.
3
Dear Anne,
Thank you for this beautifully written piece that speaks from the bottom of your heart. It's an unsettling, deeply honest story we need to know. This conversation is vital and I am grateful that you have spoken....
Thank you for this beautifully written piece that speaks from the bottom of your heart. It's an unsettling, deeply honest story we need to know. This conversation is vital and I am grateful that you have spoken....
4
I rarely mention that I have lupus, which is less visible than what you live with. I do not leave my house without long pants, long sleeves, and at least a baseball-type cap. (I've found sunscreens ineffective.)
The last time I spoke to my mother, it was mid-summer, over 95F, and very sunny. Of course I was hot. My mother once again made fun of my protecting myself by covering my skin. I'd had enough. I walked out. (She knew I had lupus. Before I was diagnosed, I had spent a week delirious from a sunburn after an hour in the sun. My mother was just a nasty woman.)
There will always be small-minded, hateful people. Put them out of your life. You don't need them.
The last time I spoke to my mother, it was mid-summer, over 95F, and very sunny. Of course I was hot. My mother once again made fun of my protecting myself by covering my skin. I'd had enough. I walked out. (She knew I had lupus. Before I was diagnosed, I had spent a week delirious from a sunburn after an hour in the sun. My mother was just a nasty woman.)
There will always be small-minded, hateful people. Put them out of your life. You don't need them.
12
Excellent advice. Moreover, it is an excellent reason to avoid the internet, something I am eager to try.
2
when I see someone whose appearance is different from the average person, whether they're missing limbs or have a skin condition or are trans or very thin or very overweight, I experience an impulse to stare at them. I'm sure it's partly curiosity. but I've taught myself to look into that person's eyes instead of paying attention to their body. I find it easier to connect to people when you look into their eyes - that's where we're all the same and that's where you can really get a sense of who they are.
and since I live on a block where there are a lot of blind people (because of a building designed specifically for them) I try to talk to them, when I can. usually while helping them across the street. my mother worked at The Seeing Eye so I guess I'm lucky that I was introduced to blind people at a young age and taught that blind people are people first and usually something other than blind second.
but what I really want to say in this comment is that essays like this are the reward for reading. I've never met you, Anne, but now I understand, to some extent, what it's like to have had your experience. and that's an incredibly powerful gift. it's inspiring to me to read about how you've faced your challenges, and also to know that you sometimes retreat into your sanctuary to find relief. I find myself doing that sometimes, as well. daily life has it's share of rough spots for many people. so thank you for not giving us the "fashionable" story!
and since I live on a block where there are a lot of blind people (because of a building designed specifically for them) I try to talk to them, when I can. usually while helping them across the street. my mother worked at The Seeing Eye so I guess I'm lucky that I was introduced to blind people at a young age and taught that blind people are people first and usually something other than blind second.
but what I really want to say in this comment is that essays like this are the reward for reading. I've never met you, Anne, but now I understand, to some extent, what it's like to have had your experience. and that's an incredibly powerful gift. it's inspiring to me to read about how you've faced your challenges, and also to know that you sometimes retreat into your sanctuary to find relief. I find myself doing that sometimes, as well. daily life has it's share of rough spots for many people. so thank you for not giving us the "fashionable" story!
64
In Quaker speak: Friend Hertzog speaks my mind.
1
Dear Anne, thank you for sharing. I am so glad you have your secret garden to replenish your spirit. I have to concur with how disheartened one can feel reading the comments sections of articles. I very much appreciate the Times articles on disabilities. My son has multiple, severe disabilities. While there are many wonderful responses and insights in the comment section, it is very difficult to read comments that say no one should have a child with an intellectual disability or that people with intellectual disabilities are only a burden on society.
29
Thank you so much for your beautiful writing and thinking. Such depth of soul.
26
Thank you.
What I DON'T understand is why people stare and make comments. Have they not learned any decency at all? I suspect that people reading this essay are people who would not do this, so I'm probably preaching to the choir, but there has to be a way to teach those who don't know better that that kind of behavior will not be tolerated. Fortunately, I've been lucky enough to have been around people who did not behave this way, but if I were, it wouldn't take much for me, as a bystander, to comment on their behavior. I was in Disneyland a couple of weeks ago and saw a young girl with a very disfiguring disorder - her face was extremely wide and elongated from the cheekbones down - and everyone around her seemed to treat her as they would a person without a disability. Great essay.
14
You don't understand why people stare and make comments? Same reason why Trump is in the race, there are a lot of people that do not have critical reasoning skills.
5
I was quite moved by your observations,your feelings and insights...good on you and all best cheer Luv.
18
What a beautiful and well-writen piece. Thank you for sharing your story, and educating us.
Enjoy your garden. It's heaven, I agree.
Enjoy your garden. It's heaven, I agree.
18
Many years ago I took my then three year old son to my foot doctor appointment. As we sat in the waiting room a young boy and his mother stepped out of the exam room and were setting up another appointment. The boy had downs syndrome and my three year old stared agape at the child.
Suddenly he started to tug my sleeve and repeated Mom, Mom. I kept hoping we'd be called in and I could avoid the question he was inevitably going to ask in this tiny room. I quickly considered how I was going to "do this right and steeling myself I finally said, "What sweetheart?"
"Mommy I have to go pee pee"
Suddenly he started to tug my sleeve and repeated Mom, Mom. I kept hoping we'd be called in and I could avoid the question he was inevitably going to ask in this tiny room. I quickly considered how I was going to "do this right and steeling myself I finally said, "What sweetheart?"
"Mommy I have to go pee pee"
22
Thank you for sharing this. I have a daughter on the high end of the autism spectrum with serious emotional problems. Her isolation is very depressing for her and us, her parents. There is no happy, fulfilling arc in our story either. She is young yet. Only 22. I hope she may find some kind of meaningful life. It is hard because of her very limited interests, and her not wanting to be in an autism group. Thank god I learned to practice mindfulness many years ago. A refuge such like the one in this story is what gets us through.
27
I will now look, at perhaps the same clouds to which you turn your gaze, and reflect on a life which deals indecipherable hands.
Thank you.
Thank you.
35
Thank you for sharing your beautiful story. I suffer from severe psoriasis and your story articulated perfectly how visible skin conditions dictate clothing choices, friend choices, and the daily exhaustively choice to explain your condition to onlookers.
I'm grateful for your courage to share the struggle of those with ongoing, incurable skin disease. You're helping more than you know.
I'm grateful for your courage to share the struggle of those with ongoing, incurable skin disease. You're helping more than you know.
45
All I can say is thank you so, so much for writing this!!!
19
Thank you for sharing your feelings and experience. I am a recently retired 5th grade teacher and we read the book, Wonder, about a 11 year old boy with Treacher-Collins Syndrome, which is a facial syndrome. The book shows several points of view, from other children, including the little boy, and the bully. Everyone learns something about themselves, but the big take away, is no matter what the differences are....choose to be kind. It is such an important lesson and it needs to be learned at a young age.
35
Just a note: Unlike most cities, Center City Philadelphia, is in fact a place where "a small leafy space" behind a rowhouse is often found.
13
Hello Anne, I remember you from Harvard. What a terrific writer you are. I'm going to buy your books. Take care.
32
Thank you for sharing your challenging experiences. I looked into this condition more after reading your article, and found some remarkable stories of others with this condition too, for example http://www.courtneywestlake.com/our-story/. Although it's a very different and short-term experience, I had extremely bad acne as a teenager and remember the shame, confusion and sorrow of being called "pizza-face" by a group of snickering, staring older boys when walking down the street, and the struggle of resolving my unavoidably 'gross' outer appearance with a culture so exceedingly focused on the external. Your story reminds me that it's not enough to avoid being an actual jerk to others who look different - that's necessary, but insufficient. It's also essential to recognize and greet with *warmth* the flame burning inside each human being.
33
I went thru a couple of extreme acne( or what I assumed was acne) episodes - one was on a trip to Europe by myself, where I remember people shrinking away from me - and how as I paused in front of a drugstore in Austria, a woman in the store saw me - and literally came outside and pulled me in, and gave me something which provided at least a little disguise.
Like you I know it was nothing compared to serious disabilities others have to contend with - but it helped a lot to understand how any disfiguring facial condition can cause others to shun someone - and be devastating in creating barriers to social contact.
Like you I know it was nothing compared to serious disabilities others have to contend with - but it helped a lot to understand how any disfiguring facial condition can cause others to shun someone - and be devastating in creating barriers to social contact.
I'm so sorry for your experience. In a lookist society, it can actually be a worse experience to have a condition like yours -- which is not fatal or unusually painful -- than to be in a wheelchair, or have a recognizable condition for which people feel sympathy rather than revulsion.
It takes great courage to persevere anyways -- to live your life, keep working, going out in public -- even though you know this will mostly be the reaction. Stay strong. I pray someday there is an effective treatment for your condition.
It takes great courage to persevere anyways -- to live your life, keep working, going out in public -- even though you know this will mostly be the reaction. Stay strong. I pray someday there is an effective treatment for your condition.
16
Dear Anne....I am so happy you have your secret garden. Thank you for your essay.
19
Ms. Kaier, thanks for this! I've now looked up ichthyosis online and know what it looks like. So the next person I see, not only will I not stare at (I like to think I wouldn't have, anyway) but I will be able to put a name to the condition. So you have potentially eliminated one round of repetitive explaining downstream.
Good to know this condition exists, and thanks for writing about it. And you. And the garden!
Good to know this condition exists, and thanks for writing about it. And you. And the garden!
12
Hello T (and all),
I am so glad that Anne's writing is making everyone think. I have 2 daughters that have Ichthyosis (there are many forms and they can all look different). One of my daughters has volunteered at Camp Discovery in CT for the past 5 years (the camp is sponsored by the American Academy of Dermatology and has Dermatologists, nurses, and counselors that volunteer their time). This is a camp where kids with skin conditions (of varying degrees) can just be kids and have fun ~~ without the comments and judgement that they might be typically subjected to.
While my daughters are not nearly as affected as Anne, they too deal with extremely insensitive comments about their skin ("Wow! You've got a really bad sun burn.", comments about how their skin looks, etc.). This was particularly difficult as teenagers (I'll bet we can all think of times when we had something said to us about our looks when we were vulnerable teens ~~ sadly, how we looked was at the forefront of all else), however it continues into their young adulthood.
I teach kindergarten, and above all else, stress that we all should treat others as we would like to be treated. If the "golden rule" was truly taught to (and understood by) everyone, the world would simply be a better place. Thank you, Anne, for sharing your experiences. I can only hope it will make this world a better place by making people more aware.
I am so glad that Anne's writing is making everyone think. I have 2 daughters that have Ichthyosis (there are many forms and they can all look different). One of my daughters has volunteered at Camp Discovery in CT for the past 5 years (the camp is sponsored by the American Academy of Dermatology and has Dermatologists, nurses, and counselors that volunteer their time). This is a camp where kids with skin conditions (of varying degrees) can just be kids and have fun ~~ without the comments and judgement that they might be typically subjected to.
While my daughters are not nearly as affected as Anne, they too deal with extremely insensitive comments about their skin ("Wow! You've got a really bad sun burn.", comments about how their skin looks, etc.). This was particularly difficult as teenagers (I'll bet we can all think of times when we had something said to us about our looks when we were vulnerable teens ~~ sadly, how we looked was at the forefront of all else), however it continues into their young adulthood.
I teach kindergarten, and above all else, stress that we all should treat others as we would like to be treated. If the "golden rule" was truly taught to (and understood by) everyone, the world would simply be a better place. Thank you, Anne, for sharing your experiences. I can only hope it will make this world a better place by making people more aware.
39
This is why middle school students are asked to read RJ Palacio's Wonder. And why adults should read Andrew Solomon's Far From the Tree.
16
Yes, Far From the Tree is an amazing book that should be required reading for everyone. I was a bit daunted by its length, but once I started reading I could hardly put it down. It is profoundly insightful, beautifully written, and it deals with important and difficult issues with empathy, wisdom, and authentic kindness. I can't recommend this book enough. You will learn things that will help you grow as a human being. Do seek it out.
2
I have a child with a disability as well. My advice to him has been always been to announce it right away -- as soon as you see a negative reaction -- It sets people at ease, and then the 'fear' that propels discrimination is gone. When someone stares, you might say, "Its not contagious, I have a skin disorder called..."
7
Kimberly Kulla-with all due respect, it is not the disabled person's responsibility to "reassure" the general public about their condition.
1
What a great piece of writing! Ms. Kaier's self-reflection and insights are very admirable. I had a bad skin condition during my pre/early teen years that was cause for much teasing and, unfortunately, many scraps. Those were terrible years. I wish I'd had someone like Ms. Kaier around for guidance back then.
20
I have scoliosis, which keeps me from standing up straight. My deformity has gotten worse due to complications from my second spine surgery. Even though I'm 56 and have spent decades with this problem, I still have trouble accepting my appearance and grieve the loss of my fictional normal self. I struggle with going out in public and often avoid it because, like you, it takes effort to deal with the reactions I encounter. It is the human condition to lose everything in the end, and I know that my losses make me more human, not less so. People who do not see the beauty in disability are missing the point.
30
Thank you for sharing that with us. Most of us cannot imagine what it feels like to deal with what you deal with. It's a very powerful reminder of the many facets of human lives and the incredible need for empathy in our world. Bless you.
Thank you for this lovely and very personal essay. However, I am puzzled by the statement that the evolutionary hypothesis for being wary of different-looking people has been 'debunked'. Who did the debunking? One frequently sees people with no science background 'debunking' evolutionary psychology, behavioral genetics, etc., simply because biological/evolutionary explanations for puzzling or disturbing behavior do not always fit comfortably with currently fashionable sociopolitical thinking. Humanities professors are no better equipped for debunking evolution than biology professors are equipped for debunking literature.
9
You don't "debunk" literature (I don't know what what would mean), but a biologist could very well write a good critical review of a literary work, or offer an insightful interpretation of a poem or novel. A humanities professor could spot an error of reasoning in some work of theoretical psychology. (Actually in multi-disciplinary programs--which many universities have--such activities aren't so uncommon.) Btw--the people writing about the evolutionary bases of attraction are generally not biologists but psychologists.
1
Pscoriatic arthritis results in very uncomforatble, sometimes dramatic-looking, scaly patches of skin over top to bottom parts of the body. A genetically passed on disease in my husband-of-40-years-family means I am familiar, as a bystander, with the stares and questions Ms. Kaler endures. My husband used to hide, too. We feel lucky his symptoms have stabilized with age. With the new medications for his disease, which he won't take because of the severe side effects, there are television, internet, and print advertissements that educate the public. I read the article Ms. Kaler quotes from in which the author states, “Our perception of human beauty (and ugliness and deformity) evolved to encourage the selection of genetically fit mates,” he wrote, “and to reduce the spread of contagious disease.” My understanding of the passage was different enitrely than hers. I didn't read it as an effort to understand the original source of fear, not an excuse. Ancient code does not, however, explain away modern day ignorance, which is the seed of lots of unfounded fears. We don't live in the dark ages. Ms. Kaler should hide whenever she needs to. No shame. Being tired and not in the mood to deal with inappropriate responses to her condition is perfectly normal. She makes a huge contribution to her world exactly the way she is. If she needs to take a break, she has created what sounds to me like a really special place for herself. I am so glad for her.
11
Thank you. Your op-ed was wonderful. I am learning disabled, and something like that can't be hid, for example, trying to figure out what I should do in response to questions that give me pause. It's all the thought process, and how I'm never sure of the answers I give will be the right ones, depending on how they're processed, and how that translates to speech. Ditto for my job, which is as a screenwriter. How will the notes I'm getting translate, and will I get them right. And it will be like this for the rest of my life, figuring all of this out, in all areas of my life.
9
In gratitude for your garden and the peace nature brings to many others. Thank you for this beautiful piece.
6
This is a lovely piece, thank you for sharing your experience. I teared up imagining the pain and helplessness your mom felt when you visited the pond.
I think we need to start doing more to educate our young children that disabilities manifest themselves in different ways and that we need to be kind and sensitive to all people. Just like we teach and model behavior for children to say please and thank you, we need to lead by example in these instances so people with disabilities or uncommon physical attributes don't feel isolated.
I think we need to start doing more to educate our young children that disabilities manifest themselves in different ways and that we need to be kind and sensitive to all people. Just like we teach and model behavior for children to say please and thank you, we need to lead by example in these instances so people with disabilities or uncommon physical attributes don't feel isolated.
49
Thank you for sharing your story. Beautifully written. My garden is my sanctuary too.
24
Many well wishers will tell you not to give up hope. To try this diet, or that thingie. Truthfully as a teacher, and at seventy years of age, those avenues have been pursued. The one that is most important is self-acceptance. You are not here to live up to someone else's expectations. Your malady, though a depressing one, has not stopped you from contributing to society as a molder of young minds, and a lover of nature. Nor has it stifled your social abilities among true friends less judgemental and more accepting of you and your condition. You have a place of refuge for those times you seek solitude. Rejoice. Count your blessings. Many have far less than you.
23
I was hit with bright red disfiguring acne when I was ten. It was bad enough that our family doctor had to be reassured it was acne before he'd O.K. my physical demanded of the camp I was going to.
Tetracycline became available when I was fifteen and people stopped giving me advice and telling me I had it because I didn't keep clean.
The birth control pill helped and by my twenties I felt normal.
I'm seventy two now and constantly get compliments on my skin. I was in the first study of sunscreen and never had a tan.
When I was fifty I got menopausal acne and Retina micro worked. I kept using it because it is an antiaging product. Nature plays strange tricks. I needed the good skin when I was a child.
I now have an invisible disability and sometimes have to hide from the world.
I envy your courage and your beautiful garden.
Tetracycline became available when I was fifteen and people stopped giving me advice and telling me I had it because I didn't keep clean.
The birth control pill helped and by my twenties I felt normal.
I'm seventy two now and constantly get compliments on my skin. I was in the first study of sunscreen and never had a tan.
When I was fifty I got menopausal acne and Retina micro worked. I kept using it because it is an antiaging product. Nature plays strange tricks. I needed the good skin when I was a child.
I now have an invisible disability and sometimes have to hide from the world.
I envy your courage and your beautiful garden.
23
I hope this helps, naively maybe, but I so want to make you feel better about the lovely person you revealed in your essay. Thank you for opening up, and for educating an awful lot of people like me who never heard of ichtyosis.
Please remember that sometimes people stare just out of curiosity, and however insensitive this is, they are not fearful of you. Just insensitive.
gardens - what a gift!
Please remember that sometimes people stare just out of curiosity, and however insensitive this is, they are not fearful of you. Just insensitive.
gardens - what a gift!
27
I have an ichythosis, too. Its why I became a Dermatologist. I urge parents to teach children not to ask "what's wrong with you?" but "how is your day going?" and other kinder ways to connect. If you can't help yourself, "Tell me about your skin" is much nicer than the terrible hurt of the word "wrong."
Skin diseases are devastating for the people with them. Please be kind to others.
Skin diseases are devastating for the people with them. Please be kind to others.
124
For much of my life I had excema, related to allergy-- also had asthma and hay fever but the excema was usually the most distressing. I know those looks that strangers give you. I know what their eyes say to you. I admire your toughness in the face of such a profound disability (my own was of a lesser degree, and has faded with age, for which I am profoundly grateful).
I am sure you have tried many things to find relief, as I have also... probiotics have done me a world of good.
I hope someday you find comfort in your own skin.
I am sure you have tried many things to find relief, as I have also... probiotics have done me a world of good.
I hope someday you find comfort in your own skin.
6
There are just so many unfair tragedies in the world. This is one of them. It is tragic that Ms. Kaier has been stricken, and tragic that she must endure reactions that are in some ways instinctual. We'll get better at this -- science will get better with diseases like hers, and people will get better with their own emotional responses -- but it's going to take time. Not much solace, I know. But the older I get, the more the best hope is hope.
5
From one gardener to another and one Philadelphia professor to another: I have some sense of what you are going through. My husband has a disability that makes him look, shall we say, odd in public. We've learned to just go about our business, but sometimes the stares, whispers and outright rude comments get to me. I always want to react with anger -- but I don't. Not yet, anyway.
Keep writing, keep teaching and keep gardening. And keep finding joy in life.
Keep writing, keep teaching and keep gardening. And keep finding joy in life.
53
I knew Anne in college. She was courageous then and one of the leading lights in our class. She gave enormous courage to so many of her classmates. Probably, she does not even know the extent of her influence. But I'm sure her classmates all remember her fondly and are deeply aware of their debt to her heroic and graceful example. MJ Crotty
119
I read the first few paragraphs of this piece without noticing the name of the author, and thought: "I knew someone with this condition in my college class -- Anne Kaier." What a nice surprise to find out she is the author, and leading what seems to be a beautiful life. All the best to you, Anne.
2
That's a tough one. I often forget I have a disability; it's mild though noticeable. I'd like to imagine you sometimes forget yours as you go through the day and are slightly surprised when people give you a second glance.
13
This was very educational for me and hopefully will make me less judgmental and fearful of others.
15
Today I learned something new, not an unusual happening! But this time I can thank a courageous woman who has learned to be gracious as well as a model for others, especially her students. Enjoy your secret garden when you need those oh so necessary moments to refuel.
15
Anne, I have plaque psoriasis and feel your pain....many people, even physicians, have recoiled from my own harmless, non-transmissible autoimmune disorder. You are a lovely person, and your words will give great comfort to others like us. Thank you for your essay, and I hope that new treatments may someday give both of us peace of mind. Big hug, Chuck (Doctor of Public Health candidate, University of Illinois)
24
Thanks for the sharing. This is not a feeble attempt at consolation but to share that there are problems from the other side of the coin. I am male, look extremely young for my age and attract unwanted attention from all kinds of people: creep, sociopath, non-straight people, you name it. For example when I go on tours alone, I always (yes, always) get attention that borders on bullying or hassling. Or when I eat alone at McDonalds, I get men sit facing me, trying to make eye contact while moaning audibly. Being constantly treated like a "toy boy" gets very very annoying and you need to be on your toes all the time to avoid certain types of people.
My purpose here is not to whine but to let you know that it is not necessarily all blessings on the other side of the coin.
Thanks again for your sharing.
My purpose here is not to whine but to let you know that it is not necessarily all blessings on the other side of the coin.
Thanks again for your sharing.
11
I suspect there are a few things you could do to make yourself less irresistible if looking young and attractive is such a burden. It takes a lot of gall to compare your "curse" with hers.
9
To ANRP,
You completely missed the point... Your comments are like those who blame rape victims for inviting their attackers by the way they dress, walk, talk, etc.
Andrew was sharing another perspective on the topic, and you precisely demonstrated the rudeness and judgmental behavior of others by your blame.
The continuum of insensitivity ranges from one extreme to another - from a lingering stare to predatory stalking - in observing to seeking out others who are perceived as "weaker/different" and unable or unlikely to rebuff an attack - either verbal or physical.
You must not live in a glass house.....
You completely missed the point... Your comments are like those who blame rape victims for inviting their attackers by the way they dress, walk, talk, etc.
Andrew was sharing another perspective on the topic, and you precisely demonstrated the rudeness and judgmental behavior of others by your blame.
The continuum of insensitivity ranges from one extreme to another - from a lingering stare to predatory stalking - in observing to seeking out others who are perceived as "weaker/different" and unable or unlikely to rebuff an attack - either verbal or physical.
You must not live in a glass house.....
1
Thank you, truly, for sharing your story. It makes me oddly grateful for my mere psoriasis. Sure, I get the odd suspicious stare and have had my days, but it is nothing like this. You are a strong, articulate and worthy person. Thank you again.
16
Inasmuch as your cool, sentinel plants are a balm for you, your article was an oasis for me. Thank you. Psoriasis has been my companion for most of my adult life and I have experienced every encounter and emotion you describe so eloquently. I'm troubled only by the idea that your, or my, condition would be considered a "disability". We are fortunate that it is such only to the extent we choose to see it that way. Rather, I have come to ignore it as a matter of aesthetic self-judgment and refuse to let it be a defining characteristic of who I am. Consequently, those with whom I'm close will comment that they no longer "see" it. In the outside world it is in its way both metaphor and a literal presence always reminding me and us of the folly and harm that can come from a notion of others based only on what we see, or think we see.
17
I appreciate your beautifully written piece. We are relentlessly bombarded with images of perfect skin by the cosmetic industry. Application of primer, concealer, foundation, bronzes, highlighters etc to achieve a flawless face is becoming an ever more demanding obligation. I wish the madness would stop and we could encounter each other without the layers of makeup and the filtered Facebook pictures. You are brave and Inspiring and I wish you lived in my neighborhood!
122
Good manners and simple courtesy should always trump curiosity and fear. This is an interesting counterpoint to "invisible disabilities" like Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that often displays no outward presentation. However, a person suffering from EDS can have terrible chronic and acute pain from frequent joint dislocations, subluxations, and numerous other manifestations. I've known of people with EDS who are verbally accosted when they legitimately and legally park in handicapped parking spaces. Ignorance is terrible in its many forms. It's particularly bad when people who suffer physically are made to suffer socially, as well.
99
One of my best friends had scleroderma which is a skin disease whereby the connective tissue on the body hardens from the outside and eventually, it hardens the inside organs too. The stares and comments have stuck with me for life even though I was the caregiver. Love is the key; love yourself and thank god every day that you have enough love for yourself to endure it all. Stay strong and thank you for the reminder that we are human and should be kind to each other daily. Lots of Love and good wishes to you!
93
If anyone is particularly rude you can always leave them with a cheerful "Well I certainly hope YOU don't catch it." Then smile pleasantly and go on your way.
18
I'm sorry people are jerks- including those here who feel compelled to explain rude people are just "curious" and have legitimate reason to be scared of catching something.
Everybody has a right to go about their day without being harassed and stared at. Also people should not have to educate tacky people in order to access public space.
It took a lot of gumption for the writer to put pen to paper because we expect those who are different to keep a stiff upper lip when they're attacked. I found her coping strategies to be the most inspiring part. She sat with her pain and chose to keep going.
Everybody has a right to go about their day without being harassed and stared at. Also people should not have to educate tacky people in order to access public space.
It took a lot of gumption for the writer to put pen to paper because we expect those who are different to keep a stiff upper lip when they're attacked. I found her coping strategies to be the most inspiring part. She sat with her pain and chose to keep going.
137
educate tacky people-why do you consider education tacky? have you ever seen the condition? look it up...it is something that should be explained because yes, it looks pretty heinous and without knowing what it is would engender a certain curiosity or fear. sorry, thats the truth......
Thank you for sharing this.
11
You've given me a breath of fresh air. I loved your story, and you put into perspective my own insecurities. The daily courage you summon to go out into the world inspires me. I've learned from you today. Thank you.
12
This article was very interesting since I had not heard of this skin condition before. I am very glad the author has a lovely garden haven in her city. It takes a lot of courage to be a teacher (I felt quite terrified when I tried it many years ago). Sometimes I see people I would like to look at longer usually because there is something beautiful or different from the ordinary person. But I always feel I must not stare. Many years ago I met a woman with patches of light brown and cream skin. At first I thought she was shedding a tan or a sunburn. But later I realized that her skin was not sunburned--it was very beautiful skin but in two shades. I never met her again but I was always curious. I think I'll try to look it up. I have always been fascinated with the great range of beauty across the human population.
a retired librarian
a retired librarian
a retired librarian
a retired librarian
8
She most likely had vitiligo - a skin disease where the immune system attacks skin cells that produce pigment.
6
So glad that you have a garden to retreat to -- seems like a real sanctuary. Curious as to whether when you have a condition that leads most to stare if that trains you to resist doing so yourself to others, or whether the initial response, like wide eyes and then maybe looking away (which I have to imagine is hurtful in itself) is instinctive.
love you
7
Nice writing! Glad you have the ability to put words to what your experience has been, and in such a way that it causes change. I personally am glad that difference is becoming somewhat less important than it was when I was growing up.... Hopefully, we are, might be moving into an era of more acceptance of each other. Recent changes have given me hope.
2
Such a beautiful, fully human story. Thank you for writing and sharing!
9
I understand. I hope not to scare people on the Metro. I want to tell them that my skin does this to itself--that they can't catch it. My dogs jumps on my ankles and legs and I get hundreds of red spots--granuloma annulare. They never go away. I hope that some people are giving you a look of compassion and a little nod that says "It is ok. We are all human and none of us is perfect."
9
Skin diseases, or diseases that manifest on the skin, can be frightening because of the fear of contagion. Think of measles, chicken pox and small pox for example. A series of petachiae in plague victims led to "Ring Around The Rosie" and posies were thought to ward plague off.
So not recognizing Ichthyosis, a very rare disease, and that it is genetic and not contagious is not an unnatural reaction. A lengthy explanation isn't necessary, just "It's not contagious" should be enough.
Still, I understand the author's painful dealings with this all her life have required tiresome explanations all the time and a natural desire to retreat. I am saddened by that but happy that her friends and students are OK with it.
Anything "different" freaks people out. Our younger child is adopted and not the same race. At home, he is no more or less than his older brother's beloved younger brother and our still-at-home child. Outside, people frequently do momentary double-takes, but because we all act as if it never happened it's only momentary.
So not recognizing Ichthyosis, a very rare disease, and that it is genetic and not contagious is not an unnatural reaction. A lengthy explanation isn't necessary, just "It's not contagious" should be enough.
Still, I understand the author's painful dealings with this all her life have required tiresome explanations all the time and a natural desire to retreat. I am saddened by that but happy that her friends and students are OK with it.
Anything "different" freaks people out. Our younger child is adopted and not the same race. At home, he is no more or less than his older brother's beloved younger brother and our still-at-home child. Outside, people frequently do momentary double-takes, but because we all act as if it never happened it's only momentary.
6
The YouTube clip of the author speaking to a group does not show much (any) disfigurement on hands or face. Actually, she looks quite average.
Also, the evolutionary basis for beauty has not been "debunked" to my knowledge. It refers to symmetry of head and body, not dry skin, as that reflects a more robust health/longevity profile.
Finally, this is one more in the looooong list of NYT book promos disguised as heartfelt essay.
Also, the evolutionary basis for beauty has not been "debunked" to my knowledge. It refers to symmetry of head and body, not dry skin, as that reflects a more robust health/longevity profile.
Finally, this is one more in the looooong list of NYT book promos disguised as heartfelt essay.
4
This was an interesting essay and the author writes very well. But I'm not sure whether I would classify it as a disability per se. My sense of disability and some official definitions as well cite problems with managing one or more major aspects of life (e.g. working, going to school, taking care of yourself, walking, communicating) because of a condition. In this situation, it sounds like the author has encountered difficulties in her life because of people's prejudices about appearance but it's not clear she has problems functioning because of them. In fact, it sounds like she has made a good life for herself.
1
You obviously have no clue about what this author tried to communicate, and about the seriousness of her disability. Please educate yourself about ichthyosis before dismissing "prejudices about appearance".
9
Thank you so much for sharing this story.
Too many people react to physical, emotional, and intellectual differences in other people as something to be feared, judged, and avoided. Your reaction to this ignorance is a personal perception that causes you so much deep and long lasting anguish; you've expressed it in this essay with grace and eloquence.
I hope that someday you'll become immune to our ignorance and that confident courage becomes your first nature.
I read that you are, quite simply, beautiful. Go with that.
Too many people react to physical, emotional, and intellectual differences in other people as something to be feared, judged, and avoided. Your reaction to this ignorance is a personal perception that causes you so much deep and long lasting anguish; you've expressed it in this essay with grace and eloquence.
I hope that someday you'll become immune to our ignorance and that confident courage becomes your first nature.
I read that you are, quite simply, beautiful. Go with that.
2
Ms. Kaier, you are a strong and beautiful woman. Thank you for your story.
love
love
5
My daughter in her thirties has dealt with this kind of reaction her whole life. She has CP and 'walks funny'. Few people understand her issues and often assume she is also mentally challenged. Some even ask if she 'had a disease'. It is very hard to have 'full participation in the social world' when there is this constant battle. I wish she could find her garden for moments of peace.
9
Thank you for writing this. It's hard to experience the looks, the prejudgements and the changes in how you are treated when your skin is different. I also have ichthyosis. I was born with it and it's been a struggle all of my 48 years. Thank you again.
11
This article brings tears to my eyes. People are often petty and cruel.
8
I am moved to tears by your letter. I feel your pain and also see what gifts you offer us all in your story, your writing, your teaching. Thank you. On a side note, I have alopecia (no hair) and have had to come to grips with a different appearance. My children, however, lift my spirit every time they say they love me the way I am because I am "unique". You too are a special one and if you met them they would probably see that right away :-). Be well.
17
Beautiful heartache.
1
Thank you for this. I am stunned by your beauty.
4
"Our perception of human beauty (and ugliness and deformity) evolved to encourage the selection of genetically fit mates,"<--Why do people who are not Evolutionary Biologists talk about evolution like they were scientists? I don't get it. Did watching X-Men and Pokemon make you an expert? I don't see people randomly deciding that they are experts on quantum physics or brain surgery,and evolutionary biology is as complex a field as either.
Having said that, the idea that attraction is based on selection of genetically fit mates is one theory for mate choice in the large sub-field of evolution called Sexual Selection theory. Besides 'good genes', there are many other theories, even some that seem intuitively wrong (e.g there's data pretty consistent with Zahavi's handicap hypothesis). Evolutionary biologists also know that many things can evolve by random chance (aka "genetic drift"). When populations get small, random chance will play a bigger role in what traits (including mate choice) evolve than natural selection will.
So the speaker you mentioned is making a sweeping claim about sexual selection in general and sexual selection in Humans in particular that he probably cant back up. If attraction is based on fitness, why do so many find half-starved models to be attractive, particularly when extremely low body fat can interfere with reproduction?
Having said that, the idea that attraction is based on selection of genetically fit mates is one theory for mate choice in the large sub-field of evolution called Sexual Selection theory. Besides 'good genes', there are many other theories, even some that seem intuitively wrong (e.g there's data pretty consistent with Zahavi's handicap hypothesis). Evolutionary biologists also know that many things can evolve by random chance (aka "genetic drift"). When populations get small, random chance will play a bigger role in what traits (including mate choice) evolve than natural selection will.
So the speaker you mentioned is making a sweeping claim about sexual selection in general and sexual selection in Humans in particular that he probably cant back up. If attraction is based on fitness, why do so many find half-starved models to be attractive, particularly when extremely low body fat can interfere with reproduction?
3
Your last comment is a very good point, and one of many reasons why so-called "Evolutionary Biology" has been debunked by real science.
What people like, and find attractive, has a lot to do with culture and fashion and it changes over time. Which would NOT be true if it was purely evolutionary in nature.
Your great grandfather would have probably admired Lilly Langtry, a robust stage actress of the 1890s, who tipped the scales at over 200 lbs (the idea of evaluating women by weight had not yet come in style!) and who today we'd call "fat".
Fashion models today must be definition be emaciated, and way below normal BMIs -- indeed, so thin they usually do not menstruate, or have a normal ovulatory cycles, and most of them smoke like fish to stay this way. This should signal "low fertility!" like a flashing red sign. Instead, men are profoundly attracted to such women, and the most powerful and wealthy men seek them out as status symbols! It CANNOT be their "fertility", so it has to be something else -- rarity, status, purity, self-control, cultural definition of "beauty".
So it is a lot of things, but NOT "fertility". Various tests have shown that most men don't have a clue what would or would not mark fertility in a potential female partner.
What people like, and find attractive, has a lot to do with culture and fashion and it changes over time. Which would NOT be true if it was purely evolutionary in nature.
Your great grandfather would have probably admired Lilly Langtry, a robust stage actress of the 1890s, who tipped the scales at over 200 lbs (the idea of evaluating women by weight had not yet come in style!) and who today we'd call "fat".
Fashion models today must be definition be emaciated, and way below normal BMIs -- indeed, so thin they usually do not menstruate, or have a normal ovulatory cycles, and most of them smoke like fish to stay this way. This should signal "low fertility!" like a flashing red sign. Instead, men are profoundly attracted to such women, and the most powerful and wealthy men seek them out as status symbols! It CANNOT be their "fertility", so it has to be something else -- rarity, status, purity, self-control, cultural definition of "beauty".
So it is a lot of things, but NOT "fertility". Various tests have shown that most men don't have a clue what would or would not mark fertility in a potential female partner.
2
Thank you for writing this. People can be horrifically cruel. I would never think that seeking solace in the garden is a cop-out. One finds ways to restore one's soul after mindless human cruelty. People often feel fear when they are faced with someone else's disability. It's possibly natural, evolutionary. But not civilized. And people with disabilities are granted the burden of educating others who may act boorishly and don't deserve the kindness. I think of it as something to do when I feel like it, and not when I don't. Others might consider taking more responsibility for their uncertainties and fears. In the end, most people will experience a disability of some kind before dying. But it's more acceptable to be in a wheelchair or need a walker if you are old, or appear clueless, or hard of hearing, or unable to speak, and so on. Inside each of us is a person who may love quiet gardens and good books, who may have something to teach.
2
Thank you. I have faced migraines, depression, and ADHD, but nothing was as bad as the psoriasis. From neck to ankle for 10 years. I understand the staring and the constant need to explain, especially when trying on clothes at a store in the summer. I especially remember a Sunday Sermon when I learned psoriasis would have made me considered "unclean" back in the day.
You have great courage.
You have great courage.
14
An eloquent voice I relate to reminds me that withdrawing from the world can be healthy - as long as we do so willingly, not because we've been isolated.
5
I would love to read more from Ms Kaier, especially her thoughts on grace and courage, which she clearly has in abundance.
50
Skin diseases are brutally cruel, emotionally...
I developed a mild skin disease when I was close to twenty. It was a weird, transformative experience. I'd always had perfect health and, of course, when you are young and just starting college, you want to look your best.
What I learned is that the skin is a very good indicator of your overall health, which in turn, is an emergent property of your overall lifestyle.
That does *not* mean your condition is somehow your fault or that you somehow deserve to suffer.
What is does mean is that if you experiment with your diet and your lifestyle, you may find relief, even in cases where you thought none was possible.
There is *always* hope.
Try changing some things and try to stay positive.
I know what it feels like to suffer. But, I also know what it feels like to get well and I want others to know that feeling. The body can heal itself, given the right environment. Not always, I know, but try.
Love yourself, always, regardless...
I developed a mild skin disease when I was close to twenty. It was a weird, transformative experience. I'd always had perfect health and, of course, when you are young and just starting college, you want to look your best.
What I learned is that the skin is a very good indicator of your overall health, which in turn, is an emergent property of your overall lifestyle.
That does *not* mean your condition is somehow your fault or that you somehow deserve to suffer.
What is does mean is that if you experiment with your diet and your lifestyle, you may find relief, even in cases where you thought none was possible.
There is *always* hope.
Try changing some things and try to stay positive.
I know what it feels like to suffer. But, I also know what it feels like to get well and I want others to know that feeling. The body can heal itself, given the right environment. Not always, I know, but try.
Love yourself, always, regardless...
12
I read your comments with disbelief. You obviously missed parts of this story. The disease has nothing to do with diet or personal habits.
19
It’s a genetic condition. She’s had it all her life. She seems to be otherwise healthy. Good grief.
21
First, not every form of ichthyosis is purely genetic in origin.
As an aside, I might well have a very mild version of it myself on the backs of my legs in the calf area. Casual appearance is just like old, wrinkled dry skin, but the diagnostic marker is the snake-like scale pattern on the surface which looks like crepe paper.
And, yes, there is a continuum with most conditions that exists, from very mild to very severe. I am not suggesting my experience is remotely comparable to that of the author of the article, for whom I feel quite some compassion.
Second, every disease, that is, *every single disease known to man*, without exception, has a genetic component.
Third, some of the people reading this article have other severe skin diseases that can be improved by some form of therapy and they are well-served by searching for one.
Fourth, hope is never lost until it is ruled out by someone, steeped in negativity and hostility, who tells you there is no hope.
Fifth, good grief, indeed...
As an aside, I might well have a very mild version of it myself on the backs of my legs in the calf area. Casual appearance is just like old, wrinkled dry skin, but the diagnostic marker is the snake-like scale pattern on the surface which looks like crepe paper.
And, yes, there is a continuum with most conditions that exists, from very mild to very severe. I am not suggesting my experience is remotely comparable to that of the author of the article, for whom I feel quite some compassion.
Second, every disease, that is, *every single disease known to man*, without exception, has a genetic component.
Third, some of the people reading this article have other severe skin diseases that can be improved by some form of therapy and they are well-served by searching for one.
Fourth, hope is never lost until it is ruled out by someone, steeped in negativity and hostility, who tells you there is no hope.
Fifth, good grief, indeed...
3
Thank you for sharing a piece of your life with us here. It can be hard to answer the same questions year in and year out. I hope you have a comfortable summer and that your garden is always a place of refuge and restoration for you. Be well.
187
While I don't doubt the fear and stupidity of people, not everyone is necessarily worrying about being infected. Some might simply be worried about you thinking you'd gotten too much sun, been burned or harmed, had cancer etc. They ask out of concern for your not themselves.
22
Sadly, I think you give your fellow humans too much benefit of the doubt. People who are genuinely concerned say things like "are you ok?" and "do you need any help?", not "what's wrong with you?"
9
Concern can sometimes be selfish. It's kinder to keep quiet sometimes.
11
I don't give people that much credit. Where's your evidence?
7
Part poem, part I am tired of the fight.
Have to give up to Philadelphians though.
They got through all the physical attributes to recognize this person deserves to TEACH at a University level.
Have to give up to Philadelphians though.
They got through all the physical attributes to recognize this person deserves to TEACH at a University level.
65
Thank you for sharing your story. Your words reveal
a beautiful, sensitive and intelligent person. Too bad so many people see only what is on the surface. They miss the best part.
a beautiful, sensitive and intelligent person. Too bad so many people see only what is on the surface. They miss the best part.
160
Wow I felt so connected to your story. As a Transgender woman, I can't go anywhere without people seeing me and reacting. Usually it's disgust or fear. It's hard to go outside, and it's hard to interact with people I don't know.
My adaption to this has been to only go to the same places for everything. I go to one grocery store, one gas station, one breakfast restaurant. When people get to know me, I can have a good time eating breakfast. Just today I tried to go to Egg and I, which is not my usual breakfast place. It was horrible, and I left without finishing my meal because I felt like I needed to go to the bathroom and I was to afraid to use theirs.
It's hard when it's impossible to hide how different you are. I hope that you stay strong, I'm rooting for you!
My adaption to this has been to only go to the same places for everything. I go to one grocery store, one gas station, one breakfast restaurant. When people get to know me, I can have a good time eating breakfast. Just today I tried to go to Egg and I, which is not my usual breakfast place. It was horrible, and I left without finishing my meal because I felt like I needed to go to the bathroom and I was to afraid to use theirs.
It's hard when it's impossible to hide how different you are. I hope that you stay strong, I'm rooting for you!
121
Jacqueline, how do they know you are transgender? Don't you dress and appear like an ordinary woman?
I've seen some homely and bizarre folks over the years -- for examples, look for websites by googling "Walmartians" -- but unless they look completely fake, like "Caitlyn Jenner", most transgender MTFs just look like Margaret Thatcher or Hillary Clinton -- plain, middle-aged, unremarkable.
I've seen some homely and bizarre folks over the years -- for examples, look for websites by googling "Walmartians" -- but unless they look completely fake, like "Caitlyn Jenner", most transgender MTFs just look like Margaret Thatcher or Hillary Clinton -- plain, middle-aged, unremarkable.
2
I understand that people are curious about those whose appearance is different than their own. To let your curiosity travel into rudeness is unacceptable. I can't imagine the emotional grit and personal strength it takes to experience public scrutiny of that kind. Why isn't compassion and friendship our default setting instead of fear and retreat?
98
I can understand your distress. But people do have reason to fear skin diseases. I went to a dentist and assumed that the odd warts on his face were congenital. I held that belief for a few years, slightly puzzled by one of his assistants who seemed to have the same malady. Then I got the same warts but on my hands. They were caused by a virus. I became very careful for several years, avoiding intimate relationships, not handling babies, not shaking hands. Warts appearance is often related to the temperature of skin, so my hotter face protected me. If I had had those warts on my face I probably would have become unemployed. Now, ten years later, most are gone. I cover those that are left with colloid and continue to try various remedies. It is reasonable to fear skin diseases. It is just that most people are not educated enough to know what are contagious and none contagious skin conditions.
45
You can have warts taken care of in a single visit to a dermatologist, usually by freezing. It is not painful, though a bit uncomfortable for a few seconds. They turn black in a couple of days and fall off. It’s a virus that does no other harm than to cause a wart. It is NOT “reasonable” to fear skin diseases; most are not contagious and I can’t think of any that are life-threatening, even if you would catch one that is contagious.
Hard to believe a dentist would not know this.
Hard to believe a dentist would not know this.
15
@Janet: what you say -- warts are caused by viruses (not, err, toads!) and are somewhat contagious. A dentist REALLY ought to know better -- shame on him! He has his hands in people's MOUTHS all day. (The poster is lucky she didn't get some nasty oral warts.
That being said: warts are not mysterious and any dermatologist can burn them off with cold nitrogen or a cauterizing tool. Unless they are very large, it doesn't hurt much. Once they are gone, that's it for THAT wart -- so you don't have to be paranoid about touching people unless you get a new wart.
Hopefully people have health insurance that covers this. The costs for dermatological care have increased exponentially, and many areas are very short on dermatology specialists. It is a big problem for rural folks, the poor on Medicaid, the elderly on Medicare. Sometimes there is only ONE provider for miles around. When I needed a mole checked a few years ago, I had to wait almost 4 months to see a doctor! And the cost was absurd, hundreds of dollars for a procedure that took about 2 minutes.
That being said: warts are not mysterious and any dermatologist can burn them off with cold nitrogen or a cauterizing tool. Unless they are very large, it doesn't hurt much. Once they are gone, that's it for THAT wart -- so you don't have to be paranoid about touching people unless you get a new wart.
Hopefully people have health insurance that covers this. The costs for dermatological care have increased exponentially, and many areas are very short on dermatology specialists. It is a big problem for rural folks, the poor on Medicaid, the elderly on Medicare. Sometimes there is only ONE provider for miles around. When I needed a mole checked a few years ago, I had to wait almost 4 months to see a doctor! And the cost was absurd, hundreds of dollars for a procedure that took about 2 minutes.
2
I just want to thank you for sharing your story here in the New York Times. As a woman who lives with a disability and gets around in a mobility scooter, I know there are disabilities and disabilities. Some are received by onlookers with sensitivity and others with unthinking cruelty. I will not say to "forgive them for they know not what they do." They should know what hurtful words and questions can do to people. There is no excuse.
But who I see in your essay is a woman who refuses to give in to the very natural desire most of us would have to hide from the stares and insensitive questions of strangers. Instead, you have chosen to live in Philadelphia's central city and teach in a university. It is hard to imagine a more public life than that. At the same time, you have found a haven - your garden - that nourishes and gives you solace. You also have a community of friends and an active life that brings you joy.
This essay will change many lives, my own among them. I wish you well.
But who I see in your essay is a woman who refuses to give in to the very natural desire most of us would have to hide from the stares and insensitive questions of strangers. Instead, you have chosen to live in Philadelphia's central city and teach in a university. It is hard to imagine a more public life than that. At the same time, you have found a haven - your garden - that nourishes and gives you solace. You also have a community of friends and an active life that brings you joy.
This essay will change many lives, my own among them. I wish you well.
179
Patricia, mobility scooters have been a godsend to those with some disabilities. My mom was one of the first people to have one, back in the 70s. Before that, it was a wheelchair or nothing, and the electric wheelchairs back there were incredibly heavy & cumbersome. My dad had seen a prototype in a magazine, and was first in line to order one.
Mom had MS, and was crippled in her 40s. But she looked completely normal. The remarks she got about the scooter were incredible and could be very rude! Some folks just were curious because they had never seen one (or wanted one!) but most remarks were along the line of "gee, I wish I could be so rich that I could ride around in a fancy scooter all day!" or "you sure must be lazy; maybe you'd lose some weight if you got off your lazy butt and walked!" (Mom was bloated from steroid drugs, and she could NOT walk, her legs were paralyzed.)
The callousness was just incredible. Few people bothered to inquire anything about her health or her reason for having such a scooter -- they were SO SURE they knew she had to be lazy, or spoiled, or that it was a fancy TOY out of a Hammacher Schlemmer catalog!
Mom had MS, and was crippled in her 40s. But she looked completely normal. The remarks she got about the scooter were incredible and could be very rude! Some folks just were curious because they had never seen one (or wanted one!) but most remarks were along the line of "gee, I wish I could be so rich that I could ride around in a fancy scooter all day!" or "you sure must be lazy; maybe you'd lose some weight if you got off your lazy butt and walked!" (Mom was bloated from steroid drugs, and she could NOT walk, her legs were paralyzed.)
The callousness was just incredible. Few people bothered to inquire anything about her health or her reason for having such a scooter -- they were SO SURE they knew she had to be lazy, or spoiled, or that it was a fancy TOY out of a Hammacher Schlemmer catalog!
9
Lovely essay, thank you. Kudos for your courage and fortitude in a seemingly unending battle with the world.
Enjoy your garden, your friends, and your students. They are the richer for your presence.
Enjoy your garden, your friends, and your students. They are the richer for your presence.
100
I googled images of this condition, which I had never heard of before. I expected to feel pity, but instead, as I looked at images of more and more people, I was deeply moved by a different kind of beauty.
52
This article reminded me of one of my high school teachers. She'd been in an accident, and her face was burned: she had no nose, and the rest of her face was scarred. So were her hands and arms. We all stared at her once, the first day we met her, and that was it. The rest of the year was business as normal. She was a great teacher, and she never had to explain anything to us, but her subject matter. We loved and respected her. But I had not thought much, if at all, about how she must have felt every time she would meet somebody new, their stares, and their pity -maybe.
It must be difficult to spend your life 'educating' people about what they find curious (or scary) about you, basically having to explain yourself to others on a daily basis.
Thank you for writing this article, I wish you a wonderful day wherever you decide to spend it.
It must be difficult to spend your life 'educating' people about what they find curious (or scary) about you, basically having to explain yourself to others on a daily basis.
Thank you for writing this article, I wish you a wonderful day wherever you decide to spend it.
268
As a college educated, brain injured African American, I hear your angst.
I was too distracted by trying to understand how moonflowers and hyacinths could bloom at the same time in Philadelphia to pay full attention to the central matter under discussion.
13
I truly feel bad for you, Tim. It is unfortunate that you could be so "distracted" by "literal" elements of her story that you could not begin to feel the deeper meaning she so eloquently shared. Please work to find some empathy within!
16
The author does not say or imply that moonflowers and hyacinths were blooming at the same time. Go back and read the essay, this time without your need to find something to criticize. Sorry, but it makes you look small.
19
Does the story actually say that they are blooming at the same time?
These two actions are not necessarily contemporaneous.
"Even a small leafy space is unusual among Philadelphia rowhomes and I craved a private place with fresh air and shaded light. I water my three trees in hot spells and nurture cool white moonflowers."
And:
"...I dropped plans to go out to a noisy restaurant with a bunch of friends. Instead, I took a book into my secret garden, read for a few minutes, and then bent to smell the purple hyacinths beneath my maple tree."
These two actions are not necessarily contemporaneous.
"Even a small leafy space is unusual among Philadelphia rowhomes and I craved a private place with fresh air and shaded light. I water my three trees in hot spells and nurture cool white moonflowers."
And:
"...I dropped plans to go out to a noisy restaurant with a bunch of friends. Instead, I took a book into my secret garden, read for a few minutes, and then bent to smell the purple hyacinths beneath my maple tree."
7
Thank you for sharing your story. I am in school for genetic counseling and too often the first person narratives presented to us have that formulaic "happily ever after" archetype superimposed onto them- a way of making genetic disorders less scary, perhaps, for students like me- but as you so eloquently point out, we don't live in a perfect world.... Nor should it be your responsibility to be the poster child for educating the world about your condition. Glad you have a place to go to escape, even for just a little while. All best to you.
54
There are so many acts of courage performed daily by ordinary people. Ms. Kaier's decision to return to the outside world after painful interactions is one of them. Seeking solace and comfort in her garden is a lovely example of grace and dignity. Thank you for this moving article.
107
My heart is with you .
I have some disabilities arising from a brain tumor. Slurred speech especially if I'm at all tired, raspy soft voice and difficulty swallowing. My scapula wings out in odd manner.
Sometimes while eating I must stand up and bend over to dislodge food I simply cannot swallow forcefully enough to propel it downwards . I cough, I choke.
Or my lips can't seal tightly and if I forget and bend over - to pick something up , to pet a cat... I have to be careful not to drool.
People think I'm impaired, drunk, intellectually limited especially on the phone .
Sometimes it's all too exhausting and I too seek solitude.
I'm so glad you have that healing, beautiful garden. And that you wrote this wonderfully sensitive essay. Thank you.
I have some disabilities arising from a brain tumor. Slurred speech especially if I'm at all tired, raspy soft voice and difficulty swallowing. My scapula wings out in odd manner.
Sometimes while eating I must stand up and bend over to dislodge food I simply cannot swallow forcefully enough to propel it downwards . I cough, I choke.
Or my lips can't seal tightly and if I forget and bend over - to pick something up , to pet a cat... I have to be careful not to drool.
People think I'm impaired, drunk, intellectually limited especially on the phone .
Sometimes it's all too exhausting and I too seek solitude.
I'm so glad you have that healing, beautiful garden. And that you wrote this wonderfully sensitive essay. Thank you.
239
Thank you for writing this. I appreciate very much you sharing your story.
71