Transitioning To Illness

Photo: David Paul Ohmer

Sickness, in Buddhism, is considered one of the four inescapable sufferings of life.  I’ve described some of my own misadventures with it in a previous post, Overcoming The Fear Of Death, in which I faced two potentially life-threatening problems.  I recovered from both completely without any residual or long-lasting harm to my health, but recently a far less serious illness has, ironically, been able to challenge my self-concept as a healthy person far more than did my almost dying.

Months ago, I developed a mild pain in my right knee. It was just bad enough to prevent me from being able to jog.  I began to rehabilitate it immediately but found doing so actually made it worse.  So I stopped and began a regimen of enforced rest.  I started using elevators everywhere I could, walking up and down stairs one step at a time by bending my left leg only, and propping my right leg up to keep my knee in the extended position whenever I would sit.  But it refused to improve.  A plain x-ray failed to reveal any abnormality.  So I had an MRI done, which showed degeneration of the cartilage under my kneecap, located just in the position I feel the pain.

When I talked to my own primary care physician, he told me what I already knew:  there’s likely no getting better from this.  He suggested I find another form of aerobic exercise.

ACCEPTING NEW LIMITATIONS

I found (and frankly still find) this necessity discouraging for the following reasons:

  1. I like jogging.  I’ve been doing it since I was in high school.  I love moving my body that way, getting into a steady rhythm of breathing and stride.  It’s convenient (fitting into my busy schedule quite well), it’s an activity my wife, son, and I can all enjoy together.  It keeps me physically fit.
  2. Jogging supports my belief that I’m still invincible.  This, of course, is an illusion, one that was already shattered by the serious illnesses I mentioned above.  But activities that aim to make me more physically capable are my way (as they were my father’s before me) to spit in the face of the inevitable decline we almost all must face before we die.  Though I can certainly find another exercise to take its place, still…
  3. …not being able to jog due to what may be a permanent injury has changed my self-concept.  I now must face evidence on a daily basis that I’m mildly unwell (of course, I’m well aware how minor an affliction this represents compared to those afflictions that others endure—see below).  I’m now faced with accepting I can no longer do something I want to do because of illness.

So often, as a physician, I make new diagnoses of chronic conditions and find myself prescribing medications that my patients must begin taking indefinitely.  Often they resist.  In response, I explain that while I understand their reluctance, to my way of thinking we should all count ourselves lucky that we now have so many medicines available to treat debilitating conditions—conditions that in the past would have caused far more disability than they do now.

Yet, now especially, I understand my patients’ dismay at having to take them.  It’s not just the bother of having to summon up the discipline to take them regularly.  It’s that having to take them represents a transition from being “healthy” to “ill.”  Being forced to confront that transition, even apart from the effects of the illness itself, can take a lot out of you.

Toni Bernhard, a long-time reader of this blog, has written a wonderful book called How to be Sick (disclaimer:  I receive no remuneration for mentioning it here; I just liked the book) that addresses how to manage the burden of a serious, debilitating illness (one far worse than my knee problem).  Though she and I practice different forms of Buddhism, I found her book full of wise ideas and suffused with a powerful determination not to be defeated by her new limitations.

HOW TO CONTINUE TO ENJOY LIFE WHEN ILL

Toni devotes her entire book to this subject, providing a level of thought and detail I can’t reproduce here.  I will say, however, that in general our spirits can be disconnected from our physical decline.  We may suffer chronic fatigue, disability, and even pain, but we don’t need to let these problems claim our lives.  It may require a resetting of our self-concept, an acceptance that our bodies experience wear and tear and breakdown as we age, and that these events not infrequently require us to change things about our lives we don’t want to change.  I may no longer be able to be a runner (though the jury is still out).  Yet if this is my future, then so be it.  I’ll work actively to let go of that aspect of my previous life and embrace what my future life allows.  I’ll be creative and see what new activities I can come up with to replace the old ones I lose.

Life is change—and while often frightening or disappointing, it’s often not the disaster we first judge it to be. Maybe, for example, I’ll find an exercise I like even more than jogging, one that provides me an even better workout. Maybe I’ll only be able to find an inconvenient but equal substitute. But I refuse to be defeated by my new limitation. It is a limitation—no use lying to myself about that. But every obstacle is an opportunity in disguise, even if I don’t see that opportunity today, as long as I refuse to be defeated. I acknowledge I’ve become “sick,” but I refuse to cave in to a self-concept that admits my life must change inevitably for the worse.

Next WeekWhen The Love Of Your Life Doesn’t Love You

24 comments to Transitioning To Illness

  • Fifi johnson

    I like your blog very much and am distressed at your distress and loss—and it’s a big one. I am so sorry. I fell in the ice in the winter of 2000 and broke my fibula. I missed my workouts in so many ways. Physically, socially, spiritually and especially mentally—I missed my workouts. I began water aerobics as a way to get back to my walking and jogging. It was the best thing that ever happened to me and my workouts. The water has become my favorite medium for exercise! And it will take this 58-year-old body into older age. Hang in there! The doaist philosophy in action!

    Thank you very much for all you share and give.

    Sincerely, fifi

    Fifi: Thanks so much for your encouragement. It is pretty frustrating, but like you experienced, I have hope to find a nice surprise waiting for me at some point. I will continue to exercise in some form, no matter what.

    Alex

  • Wayne Essel

    Alex,

    This is a great post. I had not thought about illness, medications and treatments this way, but it explains a lot for me. Good luck with your transition. This is one I have already made. My issue is my tendons, not my cartilage. My substitute is cycling.

    Just wanted you to know that I always look forward to the email notification that heralds a new post.

    Blessings!

    Wayne

  • brianne

    The evolution of the aging process with or without illness is not for the faint of heart. I quit running also due to knee pain and I later found out that most of us stop running between the ages of 59-62. During that self identity crisis that you describe I found Bikram yoga which now has opened up even more opportunities for self-reflection as well as a developing sense of strength and skill. Best to you in your own evolution.

  • Audrey from MA

    I was diagnosed with MS within the past two years. During a recent 11-day stay in hospital for a raging infection, I was diagnosed with diabetes. Two chronic conditions in a short amount of time has taken a toll on my serenity.

    As best I can, I take it one day at a time. I try to accept my aging body, although that’s a big hurdle. I try to find positives despite the tiresome self-care: daily self-injections for MS and finger pricks for blood sugar. One positive outcome: I was able to give up drinking Coke, (the soda) which I did many times a day, every day, for many years.

    Another: I feel gratitude for the friends who offered to help when I came home from hospital.

    JT

  • Snigdha

    Dear Alex,

    This is the first blog where I felt that you were actually talking with yourself and rallying yourself. I know that you have enjoyed jogging. Jogging is an activity with which you, specifically your mind, is at ease with but your body is no longer at ease with. Isn’t that what disease is about—dis-ease? Change is a hard thing—mostly it is in the mind. We have too many conceptualizations that we have picked up along the path of life and living. You have use metaphors of war—”defeat,” “cave-in.”

    Let go of the resistance of your mind, let go of the rationalizations for jogging; then you will find something else to take the place of jogging. Life is a process of letting go, you know. You are attached to jogging. Go with the flow, resistance is futile—listen to your body.

    I empathize with you profoundly. I have started listening to my body just lately and I will soon be 57 years of age!

    Take care,

    Snigdha

  • Jackie

    I find most of your blogs so timely. “When A Beloved Pet Dies” was the most moving for me, as were the readers’ responses. At the time that our family dog was on the brink of death from heart failure, I suffered my first seizure. I had already dealt successfully with IBD for over a decade; now I face the added burden of epilepsy (diagnosed on the basis of only one seizure and an abnormal EEG). What a drag it is!

    What I wanted to add for food for thought here is the incredible sense of vulnerability one with a chronic illness feels as they chase down, crawl to, or run from various forms of treatment for their new illness. I live in a small town in Canada and though our access to medical care is more universal here, in reality we wait long for tests, for our physicians to treat us, for their medical team to monitor our medications and help us make decisions on the best form of treatment. In this long queue, how much time will pass if we decide to get a second or third opinion? I can jog, but I cannot drive now and specialist medical care is one hour away. I am more vulnerable now even to the sun as my medication makes me burn more easily. Even my walks outside have changed. I do have a wonderful family though, and that is what carries me through.

  • Carolyn

    I am so sorry to hear about your diagnosis. I was confronted with a similar event 3 years ago when I was told by a doctor that my running days were over due to a chronic knee condition. I was not young (49) at the time but regularly ran with many runners older than me who were still going strong. My life was centered around trail running and that community of runners. I have transitioned to other physical activities, road and mountain biking and yoga, but nothing fills that running niche. Although I realize that I am lucky to be so healthy (except for that knee), I still grieve for the runner I used to be and get teary when I see someone running. Best of luck with the transition. I feel your pain!

  • ddg

    No, your life need not change inevitably toward the worse—but neither need it be an “opportunity in disguise.” Either way you contextualize it, you are telling yourself, if only implicitly, that the nature of the situation is win/lose or succeed/fail. It’s neither. It’s simply life *as it actually is*, with limitation and compromise. This possibility was always there; if it seems like an anomaly to you that would only be because you’ve never experienced such very human limitation. But now that you have, you expand around it, adapt, know that it’s not your identity, and know that you are experiencing what many others like myself experienced much earlier in life in different areas of physical integrity. As you’ve discovered, recovering from something life-threatening is, paradoxically, quite different from facing limitation. I would go so far as to say they’re unrelated. I believe, more than this being a post about not being “defeated” because you can’t run anymore, this is a post about your shock at the fact of limitation. You glossed over that fact too quickly in this post; the nature of your writing is such that typically you would have addressed this fact in greater detail. My sense is that you have not been able to slow down enough to try to absorb this fact without it sidelining you. Perhaps you will be able to do that later. Doing so is a real chance to find out who the heck you are. (And I don’t mean “what you’re made of”; I mean, who you are when you realize your body will not or cannot act as you had assumed it would.) I avoid using the word “acceptance” (as in, accepting limitation), because a person often assumes that what I mean is a kind of, well, defeat. You need not “accept” anything. There’s nothing to accept, or reject. It just IS. Acknowledging, more than accepting. Perhaps, without realizing it, you’ve lived up to now as if your pre-injury life was “normal,” and you feel that now you are in a “non-normal” place about which you must be “accepting.” Not true. If I may say, respectfully and sympathetically, you’ve been graced with the naivete and the sweet hubris that comes with not knowing limits. Now you know a limit. Now you’re more human. No more, no less.

  • Leslie

    I’m sorry to hear about your knee injury. I had a similar problem that became chronic. At first I thought that it would merely change my fitness routine, but then it changed how I did everything. Little tasks became hard. A lot of well-meaning people ask if I’ve tried (fill in the blank), but treatment after treatment gets old. It’s like the old Star Trek episodes with The Borg—resistance is futile.

    The one thing that finally helped me is when I noticed a couple of famous athletes who had to quit their sport over a chronic injury. If a professional athlete can’t be healed with all the very best modern medicine he can get, what are my odds.

    Now I use home exercises and medication. I’m physically limited, but accepting my body as-is helps to free my mind.

    Best wishes! Let us hear how you’re doing.

  • Elly

    Alex,
    I was going to recommend that you look at it as the start of a new adventure as you now have a good excuse to go out and try a bunch of new things, but you said as much yourself. However looking at the comments I see you are getting quite a few recommendations as people offer their own passions up for you to try. I figured I would do the same and encourage you to post a blog sometime in the future after you have tried a bunch to let us know where you end up.

    My workout/passion/art is Aikido. The philosophy is one that meshes well with Buddhism…or at least we get a lot of Buddhist practitioners. Though seiza can be hard for those who have knee issues.

    Cheers

    Elly: Another good suggestion, thanks.

    Alex

  • Diana

    Your topic is valuable for me, since I’ve had a chronic illness since 2002. I continue to learn about it to see how to improve, and I’ve used the downtime to improve my emotional outlook. Thanks for your insights.

  • Diana

    Forgot to add that prior to becoming ill, I was an avid hiker. After becoming ill, I went to a nearby botanical garden to “hike” from bench to bench. Now I do exercises to keep back pain at bay and to heal my knee—I had a torn meniscus a few years ago.

  • Diana

    One more thing about illness being a positive. Because I could only “hike” from bench to bench at the botanical garden, I decided to volunteer my writing/editing skills to the volunteer coordinator. I became an official volunteer and did a lot of writing and editing for her until she retired. I joined the cactus club that meets at the garden and since May I’ve been the newsletter editor. In these ways, though I cannot hold a job, I can keep up my skills and learn new ones. I also volunteer for the business communication org’s non-profit committee. Obstacles can be benefits.

    Diana: Yes! Obstacles can be benefits. A basic tenet of Nichiren Buddhism.

    Alex

  • Diana

    I want to check on your listing of chronic fatigue. It seems as if you are listing it as a symptom, or a condition. I have Chronic Fatigue Syndrome, an illness that can have up to 10 symptoms. The most difficult one for me is post exertional relapse.

    Diana: Fatigue and Chronic Fatigue Syndrome are quite distinct, the former occurring for a variety of reasons and being the predominant, but far from only, feature of the latter.

    Alex

  • Louise

    Dear Alex,
    I am so sorry to hear about your knee issue and how it has impacted the physical activity you love most of all. I’ve had a “touchy” right knee for over forty years (cartilage torn AKA football knee). I was told I’d have to have surgery during my life, but so far haven’t. But, the “touchy” knee does limit my ability to jog (outside or on a treadmill), something I’ve enjoyed doing for the past fifteen years. Recently, my knee has been bothering me to the extent that I need to get some medical advice/treatment. Also, my left hip has been damaged by pelvic radiation, so some days my jog is more like a limping hobble. But we all need some form of daily, vigorous cardiovascular activity…

    I know how you feel—limitations are what they are—limiting, but they do open the door to other possibilities. Please keep us updated on your situation. All the best to you!

  • Ah yes, the doctor as patient. I have been there too many times, 3 spine surgeries, paralyzed leg for a year, chronic pain and now patellofemoral syndrome in the left knee. Now I was a dancer in my youth so acceptance becomes a daily routine. But I will press on.

    Thanks for posting this, helpful for me and many I’m sure. I too have written, albeit not nearly as well as you have, about my plight The Gift of Pain at http://www.findingmeinfrance.com

    I wish you well, whatever that turns out to be…

    Bobbi

  • I, too, was told two years ago that I could no longer play tennis due to a knee problem. So I gave up tennis for a year and rested my knee. Had some therapy. Resisted any type of aerobic activity that would aggravate it. It was hard, but the pain was worse. Gradually, it healed.

    Then, I tried tennis again last winter. My knee has held up. Sometimes, we just need a break. We need to listen to the wisdom of our body. Allow it to heal. Allow it to rest.

    But I understand how you feel. I was mortified. I thought, me? I am so healthy, blah, blah, blah. But our bodies wear down and wear out. It is just a fact. I do hope I wear out gradually and not suddenly like some of my patients, though. That is the best we can hope for.

    Janice: Yup.

    Alex

  • Audrey from MA

    ddg,
    Thank you for your post. I needed the reminder:

    “…There’s nothing to accept, or reject. It just IS..”

    AT

  • Nisa

    I agree with ddg and hope you will write about this topic again and in more depth.

  • creature

    This is a timely post. My often debilitating illness is bipolar disorder, which I was diagnosed with about half a year ago, but something I now realize I’ve had my entire 42 years of life, or at least from childhood. A “mental illness” that is actually a brain disorder is, to me as the sufferer, a horrible thing to accept for oneself. The relief is that it IS in my head and there is not much I can do about it but take my medication and try to not let the patterns of the disease affect me unduly. But they do. My own Buddhist practice, and my friends, help, but the inner pain is unbearable at times.

    The hardest thing for me was to accept that what I go through is NOT something I can help, it is a brain dysfunction, it’s just not like say, a knee injury or being blind, which are more obvious signs of illness (or handicap) that people will accept.

    creature: There still does remain an entirely unjustified and unfair prejudice about mental illness that people don’t seem to feel about physical illness. One wonders how much more the science will have to advance before the stigma disappears.

    Alex

  • Diana

    I just began reading the book you recommended, Toni Bernhard’s How to Be Sick. I was quite sure, when she was describing her symptoms, that we have the same illness. On page 15, she names it: Chronic Fatigue Syndrome. I was right. Though, as you, I practice a different form of Buddhism,I am looking forward to reading Chapter 2 and the rest of the book. I liked the intro when she mentioned that she and her husband laughed, finally after many years, when talking about her illness. Thanks so much for mentioning the book.

    Diana: You’re quite welcome.

    Alex

  • Trish

    I’m sorry to read of the loss of one of your favourite activities. It takes some adjustment and you do well to not languish long in denial.

    I have had active enteropathic arthritis for about eight years. One aspect of the disease or other is always in play and there have been few periods of remission. Throughout I have continued to work full time, attend school part time, maintain a large household, and raise a family.

    The times I feel best are the times when I acknowledge the limitations and explain to others matter-of-factly why I am making accommodations for my illness. I have no control over the presentation of the symptoms, but I do have control over how I manage them. I have to live life at this end, I always say, not in some unforeseeable future where things are better or worse. Dealing with today is best.

  • Michael Kimmitt

    Alex,

    Please consider reading the book Born to Run by Christopher McDougall. Not only does it contain a fantastic story about what amounts to First Contact between American ultrarunners and the Tarahumara Indians of Mexico (who live to 90, running tens of miles each day, in between their epic drinking parties), but it also discusses the fact that the absurd injury levels associated with American running are almost certainly caused by the invention of supportive sneakers.

    There are some truly inspiring stories of runners who have recovered from injuries thought to be career ending and life changing by changing the mechanics of their running to put the stress on the places it is supposed to be.

    Plus it’s a quick read and the story is fricking amazing.

    Michael: Thanks for the recommendation. I’m always looking for a good book!

    Alex

  • Gunnar Tonnesen

    As only an 18-year-old runner who has never faced injury in his life, I can’t ethically commiserate with you on what a horror it is to never run again. But as an experienced swimmer, I can introduce you to a new form of exercise if your knee pain isn’t solved. Swimming provides basically the same aerobic exercise as running (some would argue more), works new muscle groups you may have not known existed, and bears almost no risk of the injuries you commonly get from weight-bearing activities like running. If your knee does heal, adding swimming to your running can likely prevent it from happening again.

    Gunnar: Excellent advice (given to me also by my wife). Swimming is indeed all the things you say. The only barrier to my swimming is the extra time it would take me to travel to the gym, change, shower, change again, and walk home. My knee is better, but I’m still considering a less weight-bearing exercise (like swimming) for the reason you suggest.

    Alex

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