Cold comfort, perhaps, but we are all on this spectrum. You have a great gift for evoking sensation and emotion in your reader. I identify completely with your plight, and wish only that you keep putting one foot in front of the other, one word ahead of the next, with the grace and grit this piece demonstrates that you possess.
14
As one also disabled, I can only attest to the truth and beauty of Ms Davneport's words. As I awake each morning, I am diagnosed with yet another affliction, and though an atheist, I nevertheless utter to myself, "Why me oh Lord, why me?" Self pity and defeat are the deadliest of diseases. Bless you for your extraordinary courage Ms. Davenport.
20
Inspiring article. Beautiful writing. Mahalo. Aloha
15
A beautifully wrought piece, poignantly powerful and evocative.
Thank you.
Thank you.
25
Does the author have Charcot-Marie-Tooth disease? That is what I have and the symptoms seem identical.
6
Randi, you are a living embodiment of Joseph Campbell's archetype of the Hero's Journey... and you inspire us all.
21
I will hold you in my thoughts and wish you the best - the best possible care and so you may continue writing about your plight or whatever you choose.
My 56 year old wife was diagnosed with stage IV cancer and like yourself, her spirit and her will to fight and live is where I find strength - she has been my best friend and rock for the 34 years.
I sometimes cry myself to sleep thinking of the void I will one day face. In political times like this, they talk about taking away our insurance after working hard for decades - and yes, paying for healthcare insurance from when we were young and healthy through to now. But the prospect of losing our home life savings under a heartless government and seemingly a lot of my fellow Americans is a phenomena I can't wrap my mind around. Everyone at one time or another faces the likelihood of a chronic or terminal illness - and all of us as fellow Americans and humans need to do better than those in DC who boil this down to magically cutting costs and giving tax cuts to the last one's who need.
The hell with the greed and inhumane speeches of despicable people like Paul Ryan Donald trump, and too many other so called conservatives. If that is a conservative principal then America should want nothing to do with it.
Peace.
My 56 year old wife was diagnosed with stage IV cancer and like yourself, her spirit and her will to fight and live is where I find strength - she has been my best friend and rock for the 34 years.
I sometimes cry myself to sleep thinking of the void I will one day face. In political times like this, they talk about taking away our insurance after working hard for decades - and yes, paying for healthcare insurance from when we were young and healthy through to now. But the prospect of losing our home life savings under a heartless government and seemingly a lot of my fellow Americans is a phenomena I can't wrap my mind around. Everyone at one time or another faces the likelihood of a chronic or terminal illness - and all of us as fellow Americans and humans need to do better than those in DC who boil this down to magically cutting costs and giving tax cuts to the last one's who need.
The hell with the greed and inhumane speeches of despicable people like Paul Ryan Donald trump, and too many other so called conservatives. If that is a conservative principal then America should want nothing to do with it.
Peace.
64
I must admit that in my grief from losing my husband of 40 years at first I missed it. Now I understand; I wept because I had no shoes until I met someone who had no feet. Stay true to yourself, be strong and feel the love from strangers.
12
I too have a condition that has changed my life, for which there is no traceable cause. I then had a cascade of medical crises based on the first incorrect diagnosis. In some ways that was helpful, since it put a definite date to when I was completely disabled.
I applied for SS Disability, which is notoriously difficult to have approved. Mine was approved within weeks of my application, which left me feeling that I must be in worse shape than I thought.
This condition isn't limited to any age group, the Facebook group that I am in has parents of children who were paralyzed before they could walk, through every age group up to people who were older than I was when it hit.
- A shout out here for Facebook and other online forums that makes it possible to 'meet' others who are facing the same issues. In-person support groups are impossible when we live hundreds of miles apart.
The sentence in this article about being in tears when you're too exhausted to make supper was what caused me to write this long and rambling reply. It keeps happening in everything that I used to do in a day.
I applied for SS Disability, which is notoriously difficult to have approved. Mine was approved within weeks of my application, which left me feeling that I must be in worse shape than I thought.
This condition isn't limited to any age group, the Facebook group that I am in has parents of children who were paralyzed before they could walk, through every age group up to people who were older than I was when it hit.
- A shout out here for Facebook and other online forums that makes it possible to 'meet' others who are facing the same issues. In-person support groups are impossible when we live hundreds of miles apart.
The sentence in this article about being in tears when you're too exhausted to make supper was what caused me to write this long and rambling reply. It keeps happening in everything that I used to do in a day.
8
Send a copy to every member of Congress who wants to reinstate the "previously existing condition" excuse for being rejected for health insurance and ask them if it's fair.
27
I printed this article. I can't bear to talk about my disease. But maybe i will be able to find a way to just leave this article somewhere. It reflects everything that I have feared, hoped, fought and accepted.
15
What a marvelous series of essays. Giving voice to people whom most would rather have live in the shadows and be "inspirations" is what will enact progressive policies to help the disabled. I know that is not this particular author's point, but his writing will help generate empathy and understanding. There is that hope, even when your body cannot give you much.
7
Such beautiful writing, particularly the last paragraph. All the best to you. Thank you & keep writing.
7
You could look at it this way--you discovered through your disease what most people die ignorant of--that you are a part of your body, your body is not a part of you.
It took hundreds of years of philosophizing geniuses getting it wrong (except for Spinoza); of thinking that there was some immaterial spirit or soul existing independent of the body, until neuroscience pretty much settled it for all time, though most people refuse to acknowledge as much.
Such wisdom may seem small beer to to all the pain you've endured. But it's something. It's not nothing. Figuring out a piece of the puzzle of existence along the way of enduring the pain is better than having endured the pain, which you were going to do anyway, but staying confused.
It took hundreds of years of philosophizing geniuses getting it wrong (except for Spinoza); of thinking that there was some immaterial spirit or soul existing independent of the body, until neuroscience pretty much settled it for all time, though most people refuse to acknowledge as much.
Such wisdom may seem small beer to to all the pain you've endured. But it's something. It's not nothing. Figuring out a piece of the puzzle of existence along the way of enduring the pain is better than having endured the pain, which you were going to do anyway, but staying confused.
4
Such a confusing response to such a profound piece of writing.
9
A beautifully written essay about life as it is, not as we want it to be. I find enormous value in reading essays about how people experience their life, and this one is especially moving for its honesty.
15
Don't ever forget that soaring hawk. Your body may not soar, but your mind does. Powerful writing....more like poetry than prose.
18
How beautiful, Randi. Thank you.
6
You write beautifully - as fluidly as a dancer and as evocatively as a painter. For me, that is who you are. Thanks for letting us hear you.
25
The story for those with neurological issues that don't have the luxury of just getting up and going to a neurologist - let alone a neuromuscular disease specialist - is much different. You'll be relegated to a subhuman status, given no medical care, and subjected to asinine platitudes endlessly.
Doctors avoid a costly uninsured patient like this at best; at worst they gaslight, despite clear test results - there's always an excuse that one never heard when they had insurance.
Friends and family will tell you to just be happy, smoke weed, take a magic fruit juice - simple cures that they spew as alternatives to real medical solutions, yet don't practice in their own lives. THEY need a doctor! Some will take advantage - like all things that involve destruction these ones will, despite their lower numbers, have the biggest impact on your life.
That's the American way of illness. This author, a higher caste "disabled", is blissfully unaware that yes, it can - and does - get worse, everyday a hopeless struggle. Even the most basic things - hot water - soon get out of reach. There's always a crisis looming.
Doctors avoid a costly uninsured patient like this at best; at worst they gaslight, despite clear test results - there's always an excuse that one never heard when they had insurance.
Friends and family will tell you to just be happy, smoke weed, take a magic fruit juice - simple cures that they spew as alternatives to real medical solutions, yet don't practice in their own lives. THEY need a doctor! Some will take advantage - like all things that involve destruction these ones will, despite their lower numbers, have the biggest impact on your life.
That's the American way of illness. This author, a higher caste "disabled", is blissfully unaware that yes, it can - and does - get worse, everyday a hopeless struggle. Even the most basic things - hot water - soon get out of reach. There's always a crisis looming.
7
I think I can try to understand your physical problems from the way you wrote them down in this short essay. What I am positively sure is that you must write more because you are pretty good at writing. Is this a selfish reaction to your essay, I hope not.
4
I was so anxious to acknowledge your affecting essay that I didn't see the bio info at the end. I'm going to seek out your writings. Thanks.
12
This is exquisite writing, which has inspired me. I am in the process of writing about my own medical journey, hoping to be published at some point (still in first draft). I don't know Ms. Davenport's age, but I am encouraged by the fact that she has found a way to express herself despite serious disability, after leaving a beloved university career(of I presume many years). I had to put my own writing ambitions on hold due to previously undiagnosed/misdiagnosed medical issues which will never leave me. I can relate to all the neurology appointments. Although I am not currently seeing a neurologist, I have a feeling I'm not yet done with that speciality.
At any rate, thank you Ms. Davenport. You have given me much hope in my own journey. Perhaps, even in middle age, and with increasing disability, I also can express myself as a writer--hopefully as good as Ms. Davenport.
At any rate, thank you Ms. Davenport. You have given me much hope in my own journey. Perhaps, even in middle age, and with increasing disability, I also can express myself as a writer--hopefully as good as Ms. Davenport.
11
As I lie in bed exhausted from the pain I came across your article. So well written from the heart, a message from the body. I have Lupus and all that that entails. No one understands so extra nice to read from someone who does. Though I am sorry, I wish you the good fight. The fight of self love and care .
23
Thank you for your openness and courage (and your writing, honest and curious). Many who are on the journey of loss will read your words with gratitude, hope, and see through your lens all the possibilities for journeying forward, not knowing what will come. This is a beautiful piece!
12
A perfect example of unnecessary and protracted suffering. A perfect example for a "death with dignity" pill, who knows whether we can come back and have second chance at a short (100yrs), but pleasant life? And, who has the right to forbid your choices, no one?!
5
She said she's a single mom in her 30s. And you offer her death?
14
This woman has too much courage and love of life to consider your pill. Such a negative reaction to such a positive story.
13
Both my mother and grandmother eventually stopped walking in their 70s, their increasing weakness and debilitating symptoms being largely dismissed by doctors as psychosomatic. I hope someone will identify the exact illness with which the author is coping: it may be something I should investigate on my own behalf.
7
You speak of hawks ... here is a special gift from me to you: http://www.dceaglecam.org/
I've fallen in love with this eagle family and find myself spending hours a day watching this web cam (with audio) at the National Arboretum in Washington D.C. The chat moderators are fantastic and enjoy answering everyone's questions. Following this family gives me a reason to wake up each morning and fight through my advanced MS.
I've fallen in love with this eagle family and find myself spending hours a day watching this web cam (with audio) at the National Arboretum in Washington D.C. The chat moderators are fantastic and enjoy answering everyone's questions. Following this family gives me a reason to wake up each morning and fight through my advanced MS.
20
Beautifully written and illuminating perspective - thank you.
19
This was an excellent essay. I strongly empathize with the writer's chagrin at the failure of doctors to diagnose her condition for so long.
I have myotonic dystrophy and CIDP, two rotten, rare, neuromuscular maladies which in my case developed insidiously.
I first reported the symptoms to my doctors in 1994 or 1995. I did not get a diagnosis until 2008.
But during the intervening years of pain and tests and waiting for endless hours in doctors' offices, the doctors got plenty of undeserved money from my insurers.
Some things are easy to diagnosis. If the throat is red, the glands are inflamed, the sed rate is high and temp is 103, we are close to certain that strep throat is the diagnosis - a strep test can confirm it.
But if you have a complex condition, the failure to diagnosis it may be missed for years.
Very simply, doctors do not spend the requisite time to analyze and diagnose complex diseases. A fifteen minute appointment slot is wholly unsuitalbe and insufficebnt to enable the doctor to:
A) Hear the Patient's subjective report of symptoms,
b) examine the patient,
C) refer to past tests (I have several cubic feet of test results)
d) perform medical research and
e) plan and discuss treatment options with patient.
As a Lawyer, I have spent hundreds of hours doing legal research for my clients. I would bet a favored piece of my anatomy that none of my doctors every conducted research re my problems.
I have myotonic dystrophy and CIDP, two rotten, rare, neuromuscular maladies which in my case developed insidiously.
I first reported the symptoms to my doctors in 1994 or 1995. I did not get a diagnosis until 2008.
But during the intervening years of pain and tests and waiting for endless hours in doctors' offices, the doctors got plenty of undeserved money from my insurers.
Some things are easy to diagnosis. If the throat is red, the glands are inflamed, the sed rate is high and temp is 103, we are close to certain that strep throat is the diagnosis - a strep test can confirm it.
But if you have a complex condition, the failure to diagnosis it may be missed for years.
Very simply, doctors do not spend the requisite time to analyze and diagnose complex diseases. A fifteen minute appointment slot is wholly unsuitalbe and insufficebnt to enable the doctor to:
A) Hear the Patient's subjective report of symptoms,
b) examine the patient,
C) refer to past tests (I have several cubic feet of test results)
d) perform medical research and
e) plan and discuss treatment options with patient.
As a Lawyer, I have spent hundreds of hours doing legal research for my clients. I would bet a favored piece of my anatomy that none of my doctors every conducted research re my problems.
15
We are not our bodies. We are beings inside the body. The body is only our vehicle for transport and sensory experience/expression.
I am 60 years old and have been living with chronic medical problems my entire life. I focus on the inner world and have always been ready to discard the outer shell when the time comes...
I am 60 years old and have been living with chronic medical problems my entire life. I focus on the inner world and have always been ready to discard the outer shell when the time comes...
14
That's because, try as we might, that inner world gets boring after so many years.
Hang in there. I was diagnosed with lupus at 22. It was a death sentence at the time. I'm now in my 60s.
I can't do much. The lupus attacked my joints, so my kidneys, lungs, and heart limp along. Walking was doable, with heavy "arm" crutches, until the CDC and FDA decided folks in chronic pain were a menace to society. I am sorry about folks with addiction problems, but dammit, the pain gets to me. Control yourselves.
I hobble to the toilet, have a dorm refrigerator by my bed, and have everything delivered. I got around just fine with oral morphine. Now, I often yelp when I roll over.
Over the years, I've become less active. I would no longer run up two flights of stairs carrying a window airconditioner, a mattress, a dresser, but not moving weakens muscles fast.
Do not give up. I've never been much for crying and refuse to give in to self-pity. Play the hand you're dealt. Obviously, reading the paper can be depressing. Some days, I turn off Twitter. Trolls get blocked, no second chance.
I laugh at myself, because it's often absurd. I find funny things on YouTube, Twitter, elsewhere on line. I find myself laughing like a fool. It helps. Must be endorphins or something. Each of us is amused by different things. Some days are worse than others, but laughing helps. It helps a lot. (Antidepressants can help some.)
Laughing may not give you more days, but it makes your days more fun. Find things to laugh about, wherever you can. Keep your mind occupied. Blessed be.
I can't do much. The lupus attacked my joints, so my kidneys, lungs, and heart limp along. Walking was doable, with heavy "arm" crutches, until the CDC and FDA decided folks in chronic pain were a menace to society. I am sorry about folks with addiction problems, but dammit, the pain gets to me. Control yourselves.
I hobble to the toilet, have a dorm refrigerator by my bed, and have everything delivered. I got around just fine with oral morphine. Now, I often yelp when I roll over.
Over the years, I've become less active. I would no longer run up two flights of stairs carrying a window airconditioner, a mattress, a dresser, but not moving weakens muscles fast.
Do not give up. I've never been much for crying and refuse to give in to self-pity. Play the hand you're dealt. Obviously, reading the paper can be depressing. Some days, I turn off Twitter. Trolls get blocked, no second chance.
I laugh at myself, because it's often absurd. I find funny things on YouTube, Twitter, elsewhere on line. I find myself laughing like a fool. It helps. Must be endorphins or something. Each of us is amused by different things. Some days are worse than others, but laughing helps. It helps a lot. (Antidepressants can help some.)
Laughing may not give you more days, but it makes your days more fun. Find things to laugh about, wherever you can. Keep your mind occupied. Blessed be.
85
My sister suffered the same fate. On Oxycontin she could function almost "normally." But it was taken from her and replaced with high dosages of Tylenol. That ate her liver ultimately disabling her more until it killed her.
7
What a magnificent writer! I am so sorry this has happened to you. Please keep writing, because your writing is a gift to all of us.
95
"I begin to understand that I am but a part of my body. My body is not a part of me." Such a simple statement, but so profound. What an amazing article.
95
Wow. An amazing piece. Thank you so much for sharing it.
49
You have described a close family member who has "MS." For 36 of her almost 70 years she has dealt with this disease, calmly looks it the eye day after day, never complains and keeps on "truckin." When those around our world whine and complain, I'll just point at her and tell them, "would you like some cheese with that whine." Good for Randi, I appreciate her sharing her story.
42
My heart and mind are with the author as she writes her story. I am happy for her that she has her own family, and that she has had a career in academics. There are so many genetic conditions that do this to people - rob them of their dreams, goals, and independence, and make them long to return to the time before the genetic code told their body to begin the breakdown. As I go through this with my adult child I have a visceral understanding of the author's story. She is one of many heroes in our society, deserving of the highest respect.
54
This honesty about grief and permanent loss is amazing. the only bootstraps that anyone can pull on are the bindings of tenacity. The ability you have to accept both that you are subordinated to your body and your disease, or give up hope and then to continue on anyways, that is the human condition. You are doing what you can, here and now. That is nobility true.
I only hope readers see those brave, diseased humans they want to abandon when they try to take health care away from this person.
I hope they see the boot they put on this fallen Hawk, and Know the pain and burden they squeeze into this person
I only hope readers see those brave, diseased humans they want to abandon when they try to take health care away from this person.
I hope they see the boot they put on this fallen Hawk, and Know the pain and burden they squeeze into this person
82
What beautiful writing and what a powerful moment to capture with the hawk. How brave of you to find inspiration where you can find it. Illness does that.
Thank you for sharing the circumstances of your life and heart. I hope to read more. And more.
Thank you for sharing the circumstances of your life and heart. I hope to read more. And more.
48
"I can do nothing." Except face everything with unflinching courage, not self-help cliches, and write athletic sentences that walk, run, leap whenever they choose, and inspire the rest of us in rollator world. You are my hero.
117
Everybody's story is their own, no doubt about that.
3
This writing is admirable, natural, the sentences simple, subject-verb-object. This syntax seems to mirror her condition of existing moment to moment in the world. Not an unsteadiness, or tentativeness, but its opposite, a sureness of one's state, one's condition. And the sheer effort of existing, no feigned joy, no abstract compensations, just effort. Yet in these rhythms, the beauty of the world becomes apparent too, moment by moment, looking, looking. And her character is revealed by her moving in the world, and really seeing what she sees. The opposite of despair ...
61
Physical limitations, but a strong spirit and a fine mind.
60
What you can do is write, and boy can you write. What a talent......
Our bodies are all in varying stages of decay. That is cold comfort for the person whose body begins failing prematurely and I think I speak for all your readers when we say that you made us feel your pain. If I could take this away from you, I would do so in a heartbeat.
Since I can't, all I can do is offer my thanks for sharing your considerable gift or verbosity and wit and insight with the rest of us.
Keep those bones hopeful.
Our bodies are all in varying stages of decay. That is cold comfort for the person whose body begins failing prematurely and I think I speak for all your readers when we say that you made us feel your pain. If I could take this away from you, I would do so in a heartbeat.
Since I can't, all I can do is offer my thanks for sharing your considerable gift or verbosity and wit and insight with the rest of us.
Keep those bones hopeful.
131
I've just read this twice: once for information and again with deliberation. All i can say is this: you are loved.
72
As someone with a family member at-risk for a motor-neuron disease, I found this a beautiful, comforting piece. For me, it's a reminder that medicine is indeed helpless in the face of many diseases, and that, trite as it sounds, time is the most precious resource.
52
The importance of seeing a person and not a disability. We are what's on the inside.
31
This really hits home and is beautifully written. I lost the use of one leg 10 years ago and was also at University, also a fighter, and also am still devastated by how disability controls my every waking moment and most of my dreams. It is a life-altering, all-consuming weight that never lifts.
63
Don't let physical disability get to your mind. You are still you. You deserve every moment of happiness you can wrench from life.
You are still that young person with two legs. Tell folks who stare to go to hell. They are so much less than you.
You are still that young person with two legs. Tell folks who stare to go to hell. They are so much less than you.
4
A brave testament. I hope the author has read "H is for Hawk," by Macdonald. She might like it.
31
"A brave testament."
I think that is very well said.
I think that is very well said.
22
I hope she hasn't. Horrible book in which the author purports to get over her father's death through what amounts to the torture of a wild animal.
10
I am not sure what ailment you are describing in this piece, as what you describe could be so many things. My mom has ALS and she too is suffering as you so touchingly describe in this piece. Her body takes another piece of her prisoner every day. She refuses to use external aids because to her that is giving in to the disease and she wants to continue to fight. I care for her, monitor her, love her and try to make her laugh. But there's a sadness that she can't escape- she misses being her- her active, gregarious self. Thank you for capturing in such poignant words the struggle of neuromuscular disease. I wish you and anyone else suffering from these ailments peace, love and laughter- these are the best medicines.
31