I have been searching without success to find a way to describe what it is like to recover from a procedure as physically and mentally devastating as an allogeneic transplant from a matched but unrelated donor (a “MUD,” if you will). Now I think I have found a few useful analogies that may help.
Take weight lifting. A certain breed of hard-core lifter is never satisfied with their workout unless they push themselves to the limit. Whatever the exercise (Clean and Jerk, Snatch, bench press, biceps curl, etc.), they load up the amount of weight they can lift no less then six times. In their terminology, every repetition of the exercise is called a “rep,” while doing a number of reps in one attempt is called a “set.” They stop when they can’t finish a rep no matter how much they struggle. When a lifter is able to do, say, ten or more reps, the weight is increased, so that, once again, they can only manage six reps.
After a set, they either rest for the time necessary to recover or go on to a different exercise, one that doesn’t rely on the same group of muscles as the first. After stalling out on the second, they return to the first exercise and repeat it. Their rule is, three sets to failure on each exercise.
|As Pure as it Gets|
Similarly, take the incomparable Lance Armstrong. His cycling takes him close to failure without falling over the edge for a seemingly inhuman length of time. With respect to exercise, the only difference between cycling and weight lifting, besides the fresh air, is that the endurance bicyclist must husband his or her resources over the long haul. After all, some races, such as Le Tour de France, run for three weeks! The limits of a cyclist may not be as clear-cut as those of a lifter, but the underlying challenge, managing failure, is the same.
Which brings me back to me. When I left the acute hospital for the horrors of the so-called “rehab hospital,” which I may tell you about some time, I could do very little. With respect to walking, I would reach my point of failure at about twenty paces, and I couldn’t walk at all without assistance (e.g., a nurse and a walker). I couldn’t stand up by myself or sit safely down on a toilet seat. At about half way down, I would lose control and fall the rest of the way. Then I couldn’t get up without help despite grab bars for the disabled. I ended up having to make do with adult diapers. Talk about your forced regression to infantility! I’m surprised I didn’t suck my thumb.
By the way, why are grab bars seemingly always put in awkward or useless places? How can fine restaurants or similar public establishments get away with slapping a disabled sign on a heavy restroom door that opens toward the person in a wheelchair?
Since then I have regained much of what was lost. It took me, for example, about three months before I could safely get into and out of my shower. Nevertheless, I have to be extremely careful doing it, rather like the captain of a mammoth oil tanker try nudge his ship safely to the dock. One tiny error can lead to disaster. Easy does it!
Every day I am presented with commonplace tasks that take me dangerously close to the point of failure. In my entire life I’ve never been as careful as I have to be now. There is challenge and danger in everything I do. Also like the weight lifter and the cyclist, whenever a task becomes doable (if not easy), another challenge opens up. For example, after relearning how to walk, I discovered I couldn’t climb more than one rung of a ladder, and that it was surprisingly dangerous to walk on slopes and broken ground, an everyday problem in mall parking lots.
Today, if I’m very careful, I can pick up something off the floor. But if I find myself on the floor, I can’t get up without a helping hand or making use of a sturdy piece of furniture. When I could walk again, I discovered I couldn’t drive because lifting my leg to switch from the gas pedal to the brake was too difficult. Only just now can I manage to climb up on one of those ridiculous doctor’s exam tables.
The take-away point of all this is that people who have an allogeneic transplant cannot content themselves with living within their limits. If they don’t push to the edge whenever they can, they’ll have to live within these limits forever! What do weightlifters, cyclists, and patients recovering from an allogeneic transplant have in common? I’ll tell you.
IT NEVER GETS ANY EASIER.
I jumped into the pond on the 11th of June and I’m still digging myself out of the muck. The challenges are different but not easier. I can’t imagine running, for example. Or traveling in an airplane, mowing the lawn, planting the tomatoes, riding my motorcycle, climbing out of a traditional bathtub, or carrying anything heavier than a few pounds, just to name a few. (Carrying anything causes me to lose my balance.) I know that at some point these challenges, and the new ones coming, will become easier if I push myself. My inherent laziness doesn’t help.
But lest you get the picture wrong, I must tell you that my life is nevertheless rich. Loving my new children presents no challenge at all. They are so funny! For example, if I hear ka-thump ka-thump, splat, ka-thump ka-thump splat, it’s Jared leaping down the stairs. If, on the other hand, I hear a quick thump thump thump thump thump, thump thump thump thump thump, it’s Sharon. They turn everything they do into some form of play. It’s infectious — and I am learning from them. Every day I find myself doing something that I would have never imagined my doing before, such as relearning algebra so that I can help them with their homework.
I enjoy very much being avuncular. I completely blew my first chance at fatherhood, and never imagined there would be another. In a way, by being a good father now, I am making amends for my past. Ivonne tells me I’m doing rather well. I’ve never had any role more important, challenging, and satisfying than this one. I may be too soon old, but I’m not too late schmart.
|Sharon and Jared|
In short, despite the continuing challenges of rehabilitation, including the upcoming surgical repair of another compression fracture and the five hours I spend in urgent care last Thursday (the result of a blood pressure spike while having my Groshong removed), I have enough of my life back to be rather happy. I am becoming inured to the daily ordeals. Perhaps, in a couple of weeks, I can break the invalid’s habit of buying way too much from Amazon.com, whose Prime policy of free shipping and no tax is seductively bankrupting, a true stroke of marketing genius. I still feel a touch of fear when I look at my current medical chart, which, unlike before the transplant, I do not understand, but I don’t let my condition get in the way of my having a good time!