The American Inquisition: Chronic
The Emotional Journey
By Dan Schweitzer
With review and input from a local physician who, due to his present volume of patients, would prefer to remain anonymous.
Note: This is not intended to replace the expertise of
a physician, but to supplement and inform that expertise, as well as to
inform patients, potential patients, and those who live or interact with
"We must all die. But that I can save a person from days
of torture is what I feel is my great and every-new privilege. Pain is
a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer,
So far I've written about numbers, medications, other treatment and so on. I've mentioned other things, but haven't gone into detail. I've been told that none of this information really hits home until it gets personal, so in this article I'm going to tell you a little about my own journey in pain. It isn't one of the worst I've heard of by far, but it should still give those of you who have healthy bodies a good idea of what faces you and those you love around the corner of one injury or botched operation.
Pain: The Emotional Journey
When I was twenty-eight, I was a very physical person; it was, in my own mind, mostly who I was. I was six feet, two inches tall and weighed about 240. I was a lifelong martial artist, a rock climber, a tennis player, an outdoorsman. I was proud of my physique, especially as I had been a skinny, "four-eyed" kid. I worked ambulance - a very demanding job physically - and was a senior electronics and mechanical design drafter; I worked hard and made pretty good money. I also took pride in helping around the house, including cooking and cleaning; I tried hard to be a considerate partner. I was a part time professional musician and song writer; a Paramedic Neonate Transport Specialist - an elite new kind of paramedic. Then I got hurt.
At first, everyone, including the doctors, thought it was temporary. As time wore on and I continued to hurt and to have to limit my activities though, more and more, the doctors thought I was faking and just after drugs, and the burden on my wife became harder and harder to bear. My insurance company found a way to drop me. I was able to work less and less because of the pain, so I brought in less money, and did less around the house. My wife got tired of the "excuses', tired of hearing and seeing that I was in pain.
"Get over it; lots of people hurt, and they don't just stop living!", she'd say. Finally, she left, taking our four year old son with her. As far as she was concerned, I was useless bum who'd let her and our son down. She made certain I knew that she intended to raise our son knowing that about his father, too. I lost the car, and the bills just kept mounting, though I had nothing to show for them.
When I had nothing for the pain, I stayed awake until exhaustion forced me to sleep for a couple of hours. Sleeping, I had nightmares; when I awoke, I was in more pain, as though the sleep had made me more sensitive. I was lucky to sleep three hours in four or five days. When I had something for the pain, I rested a bit more, but still not well. I worried about money, about my son, about finding something for relief.
I was fired from doctor's offices often. I was called an addict, a malingerer, a coward. I doctor shopped, because even the few who would give me something for the pain would only give me maybe a week's worth and tell me to make it last a month, or three months. I was in and out of every ER I could reach. I learned how to lie to get as much relief as possible from each doctor or ER. I had no pride left. I had to beg for care, beg or borrow money from friends, relatives and agencies, beg a piece of someone's living room floor to sleep on. I was exhausted and in terrible pain. If I had kept any pride, I'm convinced I'd be dead by now. Even when I finally got SSDI, it paid just enough that I had to quit eating for the last five or six days before payday. I did without power in the summer, got behind in the winter so that eventually it was shut off; luckily, that always happened close to Spring. For a while, trying to be closer to a large city where I might find help, I slept under a bush in a park; this was in LA.
I really wasn't quite sane throughout most of this. Who could stay sane? This was, of course, taken as further evidence that my problem was psychological, not physical. I hated doctors and "help agency" people; they were all hypocrites. Anger was the only thing I had that got me out of bed - when I did get out of bed. I was put into drug rehab several times, but they always threw me out because, they said, I had a pain problem, not a drug problem. This made no difference to the doctors, of course. I was sent to a couple of pain clinics, but they did me no good either. The basic theme always seemed to be that pain was good and the drugs that relieved it were bad, and I never got crazy enough to accept that.
My physical appearance was terrible. I couldn't afford haircuts; I couldn't afford razors. I washed in gas station bathrooms; once I washed in a frozen birdbath on someone's lawn. I weighed 155. My glasses had long since been broken and taped and retaped. My clothes were old, worn and often dirty; I washed those in gas stations too sometimes. I got lice a couple of times; I stole the shampoo to get rid of them. I desperately needed dental care, but SSDI and the VA didn't pay for that, so I was often ill from dental problems, and my breath stank. They didn't pay for glasses, either. I'm functionally blind without glasses.
I drank sometimes to get away from the pain. For a while I used any drug I could get my hands on, half hoping I might get lucky and die. I got in trouble for assaulting a couple of doctors who were very outspoken about what kind of lying, malingering trash I was; how I was obviously just trying to live on drugs and the public dole, too lazy to work for a living like everyone else.
I was terribly lonely. I thought I'd be alone until I died now. After all, I had absolutely nothing to offer anyone. My instruments had been stolen, along with my beloved books. I couldn't own much, both because I couldn't afford much, and I couldn't carry much with me because I couldn't lift it. I walked very slowly, leaning on a walking stick, sometimes having to lie down on someone's lawn or on the grass in a public park. Sometimes I wondered what had happened to the naïve, hard working, hard playing, healthy, happy, loving guy I had been. People had liked me a lot. After I got hurt though, they all stopped coming around. The few old friendships I'd had were strained to the limit, beyond it sometimes, by my always needing a place to stay, food to eat, not to move because I hurt too much. I always needed something, and even though I seldom asked my old friends, it made people uncomfortable.
This was my life for over ten years.
Going on four years ago, two doctors screwed up two operations that made me even worse, but it was the beginning of treatment. I found a doctor who began to take care of me correctly. I had another operation, and started getting pain medication for the pain that couldn't be treated any other way. The pain wasn't gone, but it was under control. Just as important, perhaps, was the fact that my doctor listened to me, and trusted me. I met and fell in love with a wonderful woman who understood and accepted what my condition was. We married, and between us we have five grandchildren. We also have ten cats. I've been playing music for the local nursing home and senior center. I've been trying to find a way to go back to work. I'm a moderator of one pain support group on the internet, and a member of four others. My contributions seem to be very appreciated. I can sleep three or four hours at a time now. I have enough to eat. I have a guitar and a piano, and I have books again. I have a good life.
Ask most people who they are, and you get a list of what they own, skills they have, and who they know. I was not so different from other people in this way, and when I lost so much, I lost my own idea of who I was. After so many years of learning to expect abuse, of losing everything dear to me but my life, it took a long time and some professional counseling to regain some pride. I had to learn that my physique, how strong I was, what I could do and could not do, was not all of who I am. I have other gifts; I have value because of who I am. These are hard lessons to learn after a life like that. This reconstruction also takes hard work and courage; the need for these did not end when I finally found help. Through all of this, I learned that I am stronger than I ever thought I could be.
Sometimes I have to see specialists for one thing or another.
These doctors still tell me that the drugs will ruin my life. I'm no longer
tempted to spit on them, but I still get angry. They will not hear that
these medications gave me my sanity and my life back. They are determined
not to be educated, and not to see any evidence that doesn't back up their
prejudices. Because of all I've gone through, because of all the others
I've seen suffer, because of all the deaths due to their ignorance, to
me they are apathetic or fearful torturers and murderers, and it's hard
not to treat them that way.
February 17, 2000