If the Corona Virus killed younger people as well then perhaps we would see movement? Currently, it's just the old folks that die.
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I live on the East side of Washington State. The West side is Seattle. I find that amusing, having been a Manhattanite for a long time. I admire the young woman's take on this virus. I don't have one disease, I have about 20. Let me tell you that keeping all the pills straight is a job, especially when you're exhausted. My reaction to the writer's op ed piece is that, yes, if you have diseases such as she and I do (I am immunosuppressed as a treatment/by a medicine) the coronavirus looks very different from the immunosuppressed side of the world. I fall under the category of gay man who survived the 80s without infection, but now, ironically, I suppress my immune system. At a certain point, someone such as myself has to decide that he will be in the world and of it. Otherwise, 20 diseases is enough to keep you locked up in a closet forever. I think that the writer very aptly speaks of the experience of being chronically ill, sometimes visibly and sometimes not so visibly. While I know that that world is on high, red alert over this virus, to me it is just another thing, of many, to get through. Being smart enough to know to what you can or cannot be exposed is critical, and not exposing yourself even though you want to is a mantra. This was a lovely piece.
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on the up side cheap cruises.
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Since childhood this writer has been inches from death, and so is qualified to advise those of us the coronavirus is making aware of our mortality. “The life that I’m working so hard to protect is not really a life at all if it is consumed by fear.”
Fear can be a lonely obsession, and loneliness in our society is the true epidemic. The lessons taught by the coronavirus will resonate long after it has run its course: You are part of a larger community; you have obligations beyond yourself; your neighbors are your allies; your government should be able to provide resources beyond the limits of the private sector; sick or well, you are not an island.
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If you have ever had a bad case of the flu, you would understand the danger of the coronavirus to your health.
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@NOTATE REDMOND -- yes, three years ago a cold turned into pneumonia. It was scary.
Italy is getting it together, but are we? Seems at least one city, Dallas, Texas, has not cancelled the annual St. Patrick's Day Parade. Never mind that an estimated 120,000 participants may be exposed to the virus...and they then spread it through their communities. The Mayor's non-actions speak loud and clear: we take profits over the public welfare. This is criminal!
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"Be social, but don’t hang around sick people."
The problem is that we don't know who is sick until we've caught a virus from them. We may not know that we are sick ourselves until we've given a virus to someone else. So I intend to isolate myself as much as possible in order to prevent getting a virus, and thereby prevent giving it to someone else (who may be even less likely to survive it than I am).
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@gardencat -- which is laudable but you do not have control over some things, such as the Mayor of Dallas not cancelling the annual St. Patricks Day Parade, and by doing so, exposing the approximately 120,000 attendants to the virus who in turn can then infect many more. If this is not criminal behavior I don't know what is. The previous mayor always insisted we are a world-class city. No. The Emperor has no clothes!
And the citizens of this city and neighboring cities are in grave danger because of the stupidity of Dallas City management. Can we fire these folks?
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I’ve read a lot of pieces by and about people disabled by disease. As a fellow member of that club, thank you, my friend.
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Wow. Just WOW! I'm adding you to my list of heros.
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" Should a friend come to my apartment, should I go on a date that ends with a kiss, should I see Billie Eilish perform when she comes to town, I will lack control over my exposure to the virus."
None of the above examples involve lack of control over the author's exposure to the virus. Each example involves a choice, regarding a social situation.
The passengers who embarked on cruise ships before anyone had heard of COVID-19 lacked control over their exposure to a virus which they did not know existed. The passengers who were quarantined after other passengers tested positive for COVID-19 lacked .
E.R. doctors and nurses, and other hospital staff have little control over their exposure to the virus .They try to protect themselves as by wearing masks & gloves, etc, while at least one doctor has died and a number of health care workers have been infected with the virus. Nursing home staff have little control over their exposure.
People who have no choice but to take the subway to work have little control over their exposure to the virus. People who have to go to work to make a living can not control their exposure. Children who have to attend school can not control their exposure.
Many people who do not have compromised immune systems are not going to attend performances, are not going out to eat, and are engaging in social distancing. I'm surprised that the author would consider attending a concert given her compromised immune system.
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what is a legacy? it's planting seeds in a garden you'll never see
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Your authenticity reminds us to be grateful every day and be kind to our fellow humans, and the planet where we live. We only make things worse when we believe our worst fears and thoughts and don't help each other. As one of our great Presidents said , " We have nothing to fear but fear itself." - Franklin Delano Roosevelt."
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The Times usually only published op-eds riddled with self pity, one of my favorites being the one by the "writer" who expressed her "fury" because her candidate (Warren) did't make it.
What a delightful exception this one is. A person living with real (not imagined or self-inflicted), difficulty, addressing it with real courage and offering truly useful advice to keep this current problem in perspective.
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Kendall, Thank you for your article!! You are beautiful and fearless! Congratulation on being 16 years post, living life in NYC, and achieving so much at such a young age including your TED talk and running your charity!! As the mother of an organ recipient, I would do anything to take that weight from your shoulders and give you a long, healthy, carefree life. My heart dreams of my daughter having that friend who stops by, that first kiss, and that concert experience when she grows up though I understand the risks involved. With the rising threat of the coronavirus, I too have curiously watched the public adopt the infection-prevention lifestyle lived by every medically fragile family. Most people will never understand the daily stress and continuous risk assessment involved in having a 50% immune system, but coronavirus gives them a glimpse. The virus will run its course, but I hope the public support for transplant recipients remains. I pray the bioengineers continue to rapidly advance 3D-printed DNA-matched organ technology that can free us from toxic immunosuppressants once and for all, but until that day comes continue living your life to the fullest and sharing your wisdom with us all!
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Thank you so much for this.
My aunt, born in 1920, was told in childhood that she had a murmur and congenital heart disease. She was always “sickly” and was advised to consider not having children. (Of course, as a young woman in 1940 this involved a larger commitment to abstinence than it does today.). Life and love being what they are, she married and raised 4 beautiful children, with the help of a very energetic husband and nearby family. In the 1960s and 70s she was offered some of the first cardiac angiography and cardiac ultrasonography which diagnosed her formally with pulmonic stenosis. She was offered open heart surgery when that rolled around, but as someone who had at that point thrived into her 50s, she turned it down. Like you, she had learned to live a life of calculated risk, enjoying today, appreciating the gift that life itself is (even with limitations), building a beautiful nuclear and extended family, never planning that it would be forever. She expected every decade to be her last. As it turned out she outlived her husband and even 1 of her daughters and died of something completely different in her mid 80s.
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Notwithstanding the serious points the author personally shares, and her specfic health profile and concerns in the wake of this yet another global viral exposure, I'll offer a term that we all need to avoid being stifled by: CoroNeurosis (CN).
That's pretty much it; keep a clear, well informed attitude, healthy amount of concern, but less fear as it can diminish our health, normal circulation, key metabolism, ease of breathing, even immune response, etc.
We'll see this go away, leave a trail of damage, and hopefully alert the CDC's/ WHO's and leaders of the CDC's/ Who's of the world that this will be back and hopefully we are prepared, calm and quick to stop it next time.
Remain calm.. enjoy what you can ....alone or w/ significant others. We are all in this together, like it and accept it. We are quite lucky to be here in the US at times like this. Wish life was as simple as it was decades ago , so we think...where there was less virulent viruses..... but that's not the case either given the prior bugs that killed millions
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“My kidneys failing keeps me present because I have no idea what next year will look like for me,” she said. “Arguments that aren’t worth the stress are released, the extra fries are ordered, the crush is informed, the story is told. It makes me question what is worth my energy.” --- Tonya Ingram, as quoted.
Very inspiring!
As was Nancy Wexler's summation on living with Huntington's disease, in "Haunted by a gene." NYT Science Times today: "Enjoy life while you can," she advised. "Find what gives you some pleasure and go for it. Don't get kidnapped by this."
Tomorrow I will renew my practice on living with health issues. What is worth my energy? What gives me pleasure? Maybe start by taking the dog for a walk ...
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I do agree a superpower in hard times is befriending your fears. I do experience relief when I say thank you not knowing, thank you anxiety, thank you sadness etc. It's a kind of surrender to what we certainly cannot control. Peace to all.
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A wonderful island of sanity in this "sky-is-falling" chaos of the moment... all rice, toilet paper, and paper towels are sold out at the Santa Barbara Costco. Mindless.
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This is a very useful perspective on living with chronic disease during a pandemic--and at other times. I have asthma and renal insufficiency and I am in my eighth decade. I am supposed to attend a large political meeting this weekend and again in two weeks. If I do not attend, as things stand now, I could lose my standing in the party decision-making structure. But I will stay home if there are any local coronavirus cases rather than risk my health. Meanwhile, I am shocked that the local Walmart near me has sold out of disinfectants not once but twice in the past few days. We need to be prudent, even those of us with chronic diseases, but we need to leave supplies for others too. Buy one can of Lysol, not two.
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The author does not draw the necessary distinction between chronic disease and a rapidly-spreading infection. Of course any person living with a chronic disease must live as normal a life as possible. But that calculation changse if you're in danger of passing the diseas on to others. While I haven't sequestered myself, I would certainly avoid attending a favourite artist's concert. Distancing - aka avoiding crowds - is the best way to flatten the spread of the disease. I believe we have a responsibility to forgo certain private conveniences and pleasures in the public interest.
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@S North ,
Perhaps it wasn't stated as clearly as it could have been, but the writer indicated that she had a compromised immune system (perhaps from the medications she must take after a liver transplant), in addition to her medical conditions.
Thus she is in the vulnerable population not only because of her chronic medical conditions, but also because her immune system is compromised, making her more susceptible to the more serious disease coronavirus causes in some people.
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@Orion Clemens That was clear enough. But my point is that the lifestyle changes we may or may not implement during a pandemic do not just affect us personally, unlike chronic disease - and the author does not draw that distinction.
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It's a nice well meaning article but it's hard to believe someone could write an article about anxiety and chronic disease and not talk about HIV.
This Covid19 episode is uncomfortably familiar to anyone who lived in the 80's as HIV emerged, was identified, and ultimately responsible for the entire branch of immunology and virology we are now using to comat this virus. AIDS was a slow motion collision by comparison to this rapidly unfolding pandemic but the elements are all there.
Three weeks ago we were all in exactly the same place I was in 1981, at a cocktail party with friends talking about "Frank's lover who got some weird cancer and is covered with spots". This week we're in 1986, "well they have a test but it's expensive and not everyone can get it". Next month we'll be in 1993, "There's medication that actually works now but not all insurance covers the good stuff, you can get a voucher from the manufacturer though".
We're not quite at 1988 where everyone you know knows someone who has died from it. But ask someone that made it through the AIDS epidemic for advice about dealing with the emotions and anxieties. Personally I'm strangely at ease with it even as a high-risk individual, been there. I'm more worriesd about my 75 year old mother.
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This was a great piece thank you for it. As a person with Epilepsy I go through everyday not knowing if or when I might have a seizure. I had one last week a work right on th sales floor of the big box store I work at. It happens it's not because of this thing or that thing it just is. The list of things that don't trigger a seizure are shorter than the list that could so.. Your line of "we have it but we don't let it have us" strikes a real chord with me. Last week(like many times before it), when I had the bad seizure at work and went home early. I showed up the next morning and people asked me "what are you doing here?" my reply was "Someday it(Epilepsy) beats me but it doesn't get to win."
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As someone in a fairly low-risk group, I admit that I am afraid of getting the coronavirus, but I'm far more afraid of passing it on to people who are more at risk. That's the biggest reason why I'm avoiding public spaces as much as possible - because I realize that if I go to that concert I could become a vector for the virus. I understand that it's important to not let fear rule your life, but it should be possible to manage your fear while also taking steps to protect others and slow down the spread of the virus. This article lumps "taking the subway" and "going to a Billie Eilish concert" together as two unavoidable elements of a normal life, and I think that's flawed. We may not all be able to stay off public transportation, but we should be willing to give up some optional things for a while to help slow this down.
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@Katy
I am touched by your thoughtfulness.
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@Katy -- thank you for being so considerate.
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This author, so brave and direct in her articulation, shows us all the way forward. If we are looking for some news report or government statement to allay our fears then we paralyze ourselves. Yes, these invisible tiny balls of RNA are causing real harm to thousands. Our lives and our way of life are threatened, but our attitudes towards the threats must be courageous, intelligent and realistic. Cringing when one near us coughs, that’s understandable for now, but let us take this new fear and “change its shape”. If we can do that then we will all be healthier.
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I get a flu shot because I don't want to hurt my oldsters. I'll keep washing my hands for 20 seconds wiping down grocery store keypads for you.
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Thank you so much for this piece. As an HIV 61-year-old, I understand the fear that we with chronic illness must live with day-to-day—that something or other will go wrong, and the thing we’ve worked so hard to keep under control will somehow get out of control and do all the horrible things it’s capable of doing. I also understand the author’s determination to get on with life, take the necessary precautions to avoid the coronavirus—just as we do in treating our conditions—and get on with living. Hiding in fear is not a life worth living.
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I donated a kidney almost 13 years ago. My decision was a calculated risk based on love. In order to donate I had to be exceptionally healthy, which I remain. In order to donate I had to work through envisioning a future in which my health, both long and short term could and likely would be adversely impacted by my decision. It was one of the best decisions I have made in my life. I have no regrets.
But Pandemics are scary. Kendall, brings up the day to day risk factors and daily challenges faced by the immunocompromised and helps us all learn from her experience and be a little better prepared to face our collective new reality.
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I'm in my 60's, have had serious, lifelong asthma (I take steroid meds daily and still my lung function is about 50% of what it should be), and I was born with a kidney defect, also resulting in sometimes dangerously low kidney function. The daily meds I must take also lower my immune system, rendering me quite susceptible to infectious diseases. This is the life I've lived for more than six decades now.
So I am at risk for contracting contracting the coronavirus both because of my age, and because of my health conditions. And the writer shares something that many, many people ought to think about - and that is, how to go about life and accomplish the things one wants to accomplish, without paralyzing fear that serious health problems always bring.
I practiced law 40 years. I have a "second act" as an artist now, and have had some of my paintings in galleries and shows. And if I let worry over my health conditions guide my life, I would have accomplished nothing.
Sure, I'm taking special precautions with this virus - after all, it is an infectious disease. But I've taken many of these precautions all my life - staying away from large crowds, not flying in the winter months when many people have colds and flu, to name a couple.
My friends my age, though, who have had generally good health all their lives, are now panic stricken. I wonder at them, as they seem, for the first time, to express the kinds of things I've had to think about all my life.
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@Orion Clemens One small but important correction, Mr. Clemens, and this is coming from someone (a scientist) who also has asthma, along with the regular bronchial and sinus infections that accompany it. You are NOT at greater risk of contracting coronavirus because of your age. What you -- and I -- face is the much higher risk of serious, life-threatening illness IF we do contract this coronavirus. But the virus isn't coming after us to any greater degree than it does the population at large. If anything, since we're older, we may be less likely to make contact with virus-infected people (barring being on a cruise ship or in a nursing home). Younger people who are out working, jostling each other, dating, riding the subway each day like Ms Ciesemier, intermixing -- they're the ones at greater risk of contracting the virus. And so it goes -- they're also at far less risk of dying from it. Take care.
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This is good advice. I am the parent of an 11-year-old transplant recipient (kidney) and I, too, feel less panicked than the general population because we are used to being careful while living our lives - while being ready for quick trips to the hospital. I hope you stay healthy.
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Thank you for this. My anxious brain isn't able to accurately assess risk right now, so this was really helpful to put things into better perspective.
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Thank you for the reality check, many anonymous people around us are one dose or injection away from critical illness, because of existing conditions and vulnerabilities. Many carry their epi-pens, nebulizers, extra insulin and so on. Be safe and be well.
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