Living With Polio
Still Here, After All These Years
Lawrence C. Becker
“You had polio? I thought they cured that.”
If I had $10 for every time I’ve heard those words, I could sponsor a vaccination program in a village in some hard-to-reach part of the world. That would be a good thing. But polio is not “cured” by the vaccines—it is prevented. There’s a difference.
Polio is not over. There are millions of survivors. Some of us are living with a substantial physical disability and have had rewarding family lives and productive careers in fields where we never have to mention or even think about polio. Some have a weak leg, or a weak voice, or a shoulder that dislocates every now and then, but have almost forgotten about the cause. And some don’t have the luxury of forgetting about polio even for a day – either because the initial disability was overwhelming, or because the surprising second punch of the disease (post-polio syndrome, which occurs decades after the initial infection) is devastating, or because they devote their working lives to rehabilitation medicine, or health policy, or assistive services.
We’re all still here — for the duration of an average lifespan, apparently. In the US alone, there are three quarters of a million polio survivors still standing (or sitting). We have some things to bring to your attention this week.
We think there are still good lessons to be learned from polio – lessons about diseases, injuries, disabilities and epidemics of many sorts. The polio epidemics are over in the United States, and in most places throughout the world. The eradication effort continues, and must be brought to a successful conclusion. But the persistence, and courage, and genius that brought us the vaccines in the 1950s is not the only important thing to remember from the polio years.
At the top of my list of things to remember, for example, is “functional” rehabilitation. This is the part of rehabilitation that goes on after you are out of danger medically, and after the extent of your permanent disability is known, and after you’ve gotten all that shiny new equipment – wheelchair, or braces, or other assistive devices. What remains after all of that is the job of making it work; making it truly functional. This takes time, effort, and resources.
For example, when it became clear to everyone around me, in early 1953, that my hands and arms were never going to be usable again, the occupational therapists in the rehab hospital taught me how to do some unusual things with my feet – writing, for one, and typing. Those things became very useful, eventually. But the OTs, for their own therapeutic reasons, also taught me how to do all sorts of things with my feet, or with a mouthstick: to draw, to weave a scarf on a small loom, to move chess pieces around on a chessboard, and other things. All of them were exhausting. Some of them were actually dangerous. (Ever try to use a wood burning craft kit with your feet? In a hospital bed? The former Cub Scout in me insisted on it, against the OT’s better judgment.) Most of these things I didn’t do very well, and didn’t want to do at all. My mother was delighted with the scarf, but I don’t think she actually ever wore it in public! And the writing and typing, which I did very much want to do, didn’t become genuinely functional skills for several years. It took a long time, and it was hard work.
I raise this issue only because I am worried about rehabilitation practices today – rehabilitation for spinal cord injuries, stroke, and traumatic brain injury, for example. It seems to me that people are getting shortchanged with respect to long-term, functional rehabilitation. I’ve seen this in the research projects I’ve helped monitor at the National Institutes of Health; I’ve seen it in the appalling news reports about the lack of long-term rehabilitation given to badly injured veterans of the Iraq war (especially those with traumatic brain injuries); and I’ve seen it in the crowded physical and occupational therapy units here in Roanoke, where therapists are required by the limitations of insurance coverage to try to compress their outpatient work into a few weeks of sporadic visits.
When I raise this issue with physicians, researchers, therapists, and even patients, I quickly hit a stone wall. I compare today’s “brief therapy” to the extraordinary length of my own inpatient rehabilitation (2 ½ years), or to the length of time it took Franklin Delano Roosevelt to get to the place that allowed him to resume his political career. Often, I get an answer that is too much like remarks about polio’s being cured, or its being over.
People say, “Things are different now. The technology is so much better. The hospital stays are shorter. There are fewer social and legal barriers for disabled people. There are curb cuts, and ramps, and automatic doors, and accessible bathrooms in public places everywhere. We see people motoring around in wheelchairs or on scooters in malls. Life is faster, and more expensive. Rehabilitation is faster, and more expensive. And better, no? ”
Not so much. All of that misses my point. Some things just take time and effort, not more and more expensive technology. Three to six months of hospitalization and intensive therapy is now typically the outside limit for even the most severe injuries. Modern medicine is good, but it’s not that good.
If I had been discharged after six months, I would have been a quadriplegic in an iron lung. I wouldn’t have had any genuine functional therapy at all by that time, and I probably wouldn’t ever have gotten any because merely caring for me at home – keeping me alive and reasonably comfortable — would have been a consuming project for my family. Getting access to functional therapy would have been so exhausting for everyone that it would have been demoted to a low priority.
Yes, things are better now, but in the functional therapy line, mostly they’re just more expensive. The body still takes its own good time to heal. People have limited energy – not to mention limited patience for weaving ugly scarves in unusual ways — even if it helps develop the muscles needed for genuinely functional skills. If getting yourself dressed in the morning takes two hours, after which you have to rest for two more, dressing yourself is not yet a functional skill. Loving families are typically too ready to say “Here, let me help you with that.” There is no substitute for relentless, inventive, no-nonsense, long-term functional therapy, guided by unsentimental professionals.
Polio survivors in the United States had this – at least throughout and after the epidemics in the late 1940s and 1950s. We’ve done well all these years because of it. Physiatrists, physical therapists, orthotists, occupational therapists were available to us for extended periods of time, and we still go back for regular tune-ups. It is a lifelong effort. We just don’t talk about it very much.
It would be a shame if people forgot this lesson from the polio epidemics. So the next time you read about traumatic brain injury, pay attention to the part about rehabilitation – how long it takes, whether people are getting enough of it.
The next time you read about someone with an injury like Christopher Reeve’s, but without his financial resources, being discharged to a nursing home after three months in a hospital, pay attention to what is said (if anything) about plans for functional rehabilitation.
Don’t be dazzled by accounts of all the fancy, expensive equipment supplied to these folks. Unless we actually stick with them long enough for them to acquire genuinely functional abilities, all they (and we) will get from all that equipment is a few badly made scarves that only a mother could love.
A much better way has already been pioneered. Let’s remember it.
Lawrence C. Becker is a retired philosophy professor, who had polio at the age of 13, in 1952.