In the kingdom of the sick

Posted by Allen Rucker in Life After Paralysis on February 20, 2018 # Health, Mobility

One of the bright spots of living with paralysis – yes, there are occasional bright spots in this racket – is the often instant simpatico you feel in the company of other people dealing with health problems. Susan Sontag, in “Illness as Metaphor,” her classic essay on how we see those who are ill or disabled, drew a territorial line between two “kingdoms,” one of the well and the other of the sick. Though we paralytics are not “sick” in the conventional term, and in fact hate being thought of as such, we seem to understand the internal landscape of illnesses of all sorts better than your average Joe. It’s like we’re all veterans of the same war.

The first time this dawned on me was during a visit to the now-closed Walter Reed Army Medical Center a few years back. It was doctors’ visitation day and the waiting room was filled with young amputees from Iraq and Afghanistan and their families. Rolling into that room with my wife and other non-disabled companions, I didn’t feel the least bit out of place. While my mates stood around uncomfortably, I rolled over to one 19-year-old missing his right leg, held out my hand, and we started gabbing like old friends. I asked him how he was getting along, and he smiled and said, “My track record with the ladies has gone way up!”

I thought of this while reading a wonderful opinion piece in the New York Times of a few weeks back called “What to Say When You Meet the Angel of Death at a Party.” The “angel of death,” in this case, is the author, Kate Bowler, a woman dealing with stage IV colon cancer for the past two and a half years. Her cancer is noncurative, kind of like my own paralysis – at my age, I will never be a candidate for epidural stimulation – or most physical disabilities like CP, MS, Spinal Bifida, and the like. With an increasing number of cancers these days, doctors can delay the progress of the disease, perhaps for a lifetime. Cancer of this chronic nature becomes more of a disability than a sickness.

What I really sparked to in Ms. Bowler’s account were the ways that others responded in her presence. In most cases, these were people with no direct experience of debilitation. She has a wonderful way of categorizing these people whom everyone with paralysis has encountered. We’re all reading from the same playbook.

The first category is the “minimizers.” To quote Ms Bowler, “These people are easy to spot because…their sentences begin with ‘Well, at least…’” As in…”Well, at least, you still have your marbles,” or “Well, at least, we all die in the end, don’t we?” By dismissing your condition so glibly, they are dismissing you, too. Minimizers are as infuriating as maximizers, those who want to dwell ad nauseum on your horrid fate.

Then there are whom she calls “the teachers,” the ones who are quick to point out all the life lessons you must be learning. They are firm believers in eternal verities like “everything happens for a reason” and “God only gives us what we can handle.” Teachers are not much different than her third category, the “solutions people.” They tend to think the remedy for any misfortune like this is sweet and simple. One woman, a complete stranger, wrote Ms. Bowler to remind her that she must “Keep smiling! Your attitude is your destiny!” Basically, the message here is, if you suffer pain, doubt, or depression, “it’s your own fault, dummy! You just have a sucky attitude!”

My favorite line in the whole piece is a gem: “There is a trite cruelty in the logic of the perfectly certain.” Faced with the capricious and often brutish events in life, they run to simple mantras to deliver themselves from thinking or empathizing or just bearing witness.

Most people close to you will not be so quick to sum up your life in a refrigerator magnet. And if they too have ventured into the Kingdom of the Sick, they will most likely feel a kinship that will in some way illuminate both of your lives and make you both feel less alone in the world.

Hey, you take your bright spots where you can find them.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.