There are many reasons why you might want to read this book. Perhaps you are a doctor or nurse or otherwise part of the caregiving staff and you want to know what it’s like to be on the receiving end of a catastrophic injury. Perhaps you are the healthy partner of someone who has suffered such an injury and want to have some idea of what your partner is going through. I have gone to great pains, perhaps too great, to describe how it felt to be thrust into the world of the catastrophically injured. A simple fall in the apparent safety of my own home while exercising did that to me. In a split-second I had gone from a normal bipedal to Homo sapiens tetraplegia. All four limbs stopped working.
I write about the physical and mental challenges that threatened my recover. At the risk of being discomforting to those of you who are unharmed, I go into (perhaps excruciating) detail because I want those in a similar situation to be able to recognize themselves and maybe even benefit from how I coped.
For example, in a nanosecond my ability to perform basic bodily functions vanished. I felt humiliated, ashamed and guilty. It was as if it were my fault. Most of all I felt helpless. I had been turned into an infant. Your caregiver will tell you that bodily excretions are perfectly natural. If she (or he) is not from America (very likely), she may even give you a lecture on how Americans are far too squeamish about such things. She will tell you this while she is washing and drying you, rolling you from side to side in bed to get your trousers over your hips (you can’t do that yourself) and dressing you in fresh clothes. Each gesture drives you deeper into depression.
Things aren’t much better at the other end of the cycle. Your meals are brought to you. You are either in bed or sitting up in a wheelchair that you have been lifted into like a sack of potatoes. The hospital orderly sets the tray in front of you. You look around. Your ward mates have already started in on that simple, commonplace even, unconscious act of feeding oneself. Not you. All you can do is lower your eyes and wait until someone has found enough free time to feed you. Once again you are an infant.
“Will it ever be thus?” you wonder.
If you are the kind of person who gives up easily, the kind of person who sees no life worth clawing your way back to, you will decide to do as little as possible. That will be your way of committing suicide. Like the drunkard or the heavy smoker or the gambler, it will take a very long time.
If, on the other hand, you are like me, you will be completely obedient. You will not fight. You will not complain. You will do what everyone tells you to do. You will do it because you believe that if anything is going to change, this is the only way it can happen. You understand that your body now has severe limitations. You don’t know what the limits are. Neither do your doctors or your therapists. But you know that that isn’t any reason not to try.
Every time your physical therapist sets you a new goal, you are painfully aware of a relentless ambiguity. Have you not yet achieved the goal because the bruised neurons of your spinal cord need more time, or are they beyond repair? Even when you do what is asked of you, it doesn’t help. You worry that the next goal might be the one when your body finally hits the brick wall of “no-getting-around.” Each day will be like jumping into a swimming pool with your eyes closed hoping against hope that you will hit water.
Billy Crystal tells the story of being taken to see Shane by Billie Holiday. He was nine years old. At the end of the movie Shane rides off into the distance while eight-year-old Joey yells, “Come back, Shane.”
At that closing moment Billie Holiday leaned over to her namesake and, according to Crystal, she said “He ain’t never comin’ back.”
That’s what frightens you every waking moment. Your spinal cord ain’t never coming back.
If you want some advice, it is this. Try anyway. If a doctor tells you, as one of mine did, that you would never walk again, you don’t have to believe him. He doesn’t know who you are. He’s just falling back on statistics. It’s a comfortable thing to do. Maybe he’s right. But maybe not. Just remember that not trying is letting someone other than yourself call the shots.
Another reason why you might want to read this book is to get a handle on how you know when you’re getting the best possible care. I can’t answer that definitively. But I can give you a pretty damn good indicator.
What happened to me was unusual. I was a patient at two different kinds of rehab hospitals. One was the Spaulding Rehabilitation Hospital in Charlestown, Massachusetts. Here I was a patient under the auspices of the United States healthcare system. That is to say, Medicare and Medicaid. That insurance ran out after six weeks. Spaulding sent me elsewhere. They had to. There was no money. As incredible luck would have it, I was eligible for admission to the Veterans Administration Hospital in West Roxbury Massachusetts because, a long time ago, I had served in the United States Air Force. Here’s a spoiler alert. I left Spaulding pretty much the way I went in, immobile. Five months later, at the VA Hospital, I was walking.
There were a lot of differences between the two hospitals and I’ll go into those in detail. But this is the most important. At Spaulding I was told that the staff met on a regular basis to discuss my care. I was never invited to those discussions. That’s not completely true. Over a seven-week period I was invited to one. At that discussion, I was treated as an observer. The woman who ran the meeting had to be forced by my daughter to recognize that I was there. Despite this roundtable of experts, I never had the sense that anyone was in charge of my care. During the last two weeks of my stay, in fact, therapists would come in to my room and ask me what I wanted to do for the next hour, as if I had the slightest idea what was best for me.
By contrast at the Veterans Administration hospital I was required to attend a weekly meeting at which everyone from medical doctor to nurse to social worker to therapist was present. My primary care provider ran the meeting. I sat in my wheelchair at the head of a horseshoe shaped table and listened while everyone told everyone else how I was doing. When they were finished reporting, my doctor asked me how I felt about it. Then she would give instructions about what was to happen next. I had a genuine place at that table. I was treated like a participant. Most important, I knew who was in charge. I knew where her office was. I knew that her door was open to me whenever I needed it.
That, I think, is the key to telling whether you are in the best possible place for recovery. If you have a sense that there is a coordinated plan to bring you back and that you are a part of that plan, then stay there. If you feel as if the left caregiving hand doesn’t know what the right one is doing, get out.
Another reason why you might want to read this book is to see what lessons it might contain with respect to health care policy in general. Here is what I would say about that. The kind of care I received at the Veterans Administration hospital in West Roxbury showed me that there is a life after catastrophe. My fervent wish is that everyone in the United States have access to that kind of healthcare. To put it in its starkest terms, VA medicine is as close as America has come to socialized medicine. It is also the most effective. That’s a tough pill for people to swallow; namely, some version of socialized medicine works best. My response to that is: deal with it.
A 2003 study published in the New England Journal of Medicine concluded, “As compared with the Medicare fee-for-service program, the VA performed significantly better on all 11 similar quality indicators for the period from 1997 through 1999. In 2000, the VA outperformed Medicare on 12 of 13 indicators.”
There is a familiar maxim: if it ain’t broke, don’t fix it. It is one of our country’s greatest healthcare tragedies that we are currently governed by legislators whose version of that maxim is: if it ain’t broke, break it.
So, here’s my policy suggestion. Make VA healthcare available to everybody.