bent

Sometimes Pain is Just Pain

From Inability, Through Surgery, Toward Recovery

by Larry Roberts

Nothing scares me more than losing control. I don't like being depressed. I don't like getting behind at work. I don't like it when my wheelchair breaks down. I don't like it when what I want isn't what other people want and I don't like conflict and disagreement. I don't like snow when it means I can't travel the sidewalks.

I didn't like it when I began to notice that it was becoming gradually more difficult for me to get up from the floor into my wheelchair, more difficult to get out of bed to go pee in the middle of the night, more difficult to take a shower, to dress. I had long ago stopped putting on my own shoes. It was just too hard. It became easier to avoid the difficulty and have my lover put them on for me.

I was afraid, and gradually I became more afraid, less and less mobile and less independent. I wanted to believe that I was just being lazy, that I was just overwhelmed, that if I confronted my worry and my resistance to physical therapy I could regain the abilities that I had lost. But things kept getting worse and I started getting desperate.

At the suggestion of my physical therapist I began taking antispasmodics. Since my doctor was not well versed in them he referred me to a neurologist. The neurologist ran some tests and decided I should see a neurosurgeon.

This process did not go quickly. It's hard for me to get my mind around the chronology, but I know that it took most of 2003 and part of 2004 to get to the point of discussing spinal surgery. In April of 2004 the neurosurgeon finally diagnosed a herniated disc in my lumbar spine. I was slated for surgery on May 13.

Here's a snapshot of the diagnostic process that led to surgery. The neurologist arranged for an MRI to check my spine. Told that it was important for me to remain still, I did my best to cooperate. A subsequent consultation with the neurosurgeon suggested several things that could be wrong, all nerve-wracking possibilities: I might have a damaged disc; I might have some bone splinters pushing into my spinal cord; arteries and veins in the spinal column might be compressed. The neurologist confirmed these possibilities, but told me the films were too blurry for an accurate reading. He advised a second MRI, this time under general anesthesia because my cerebral palsy makes image-blurring spasms likely.

During the second attempt the technicians took the wrong picture, so a third was scheduled. While waiting for that date I woke up one morning in pain and unable to move. My doctor told me to call an ambulance and get to the emergency room. Under sedation an MRI was done, one that yielded a picture the neurosurgeon was able to read. Three MRI procedures and many months later, in pain, losing strength, and scared, we finally knew that I had a herniated disc.

III

According to pre-admission paperwork my surgery and recovery at Upstate Medical Center in Syracuse, NY would take a total of twenty-three hours. Instead I was there for ten days, with another ten days at the rehabilitation unit at Cayuga Medical Center in Ithaca, where I live.

Never had I endured anything like the surgery and the subsequent recovery process.

Before surgery I had begun to lose my ability to stand, to transfer from my wheelchair, to crawl, to do things that I had always been able to do; after surgery, I would lose more and have a hard road back. I don't remember the first post-surgery day, but the second evening is burned into my mind by the pain that took over my body whenever my hips and lower spine went into spasm. All I could do was scream and cry and beg the nurses to do something to stop what felt like muscles being torn from bone. I was in such distress that the hospital allowed my lover to spend the night next to me on a chair.

Despite drugs the pain was my regular companion during that first week. Even as it slowly became bearable I continued to experience episodes that would cause me to scream and cry and beg for relief. Difficult as it was for me, I realize how hard it was for my lover, and for my parents, too. Several times my mother had to leave the room because she couldn't stand to see me in such distress.

I suspect that I suffered so much pain because my body had simply had enough by the time the doctors finally diagnosed what was wrong with me. Eventually I was able to sit in my wheelchair again. I could leave my room, go to the cafeteria, to the chapel, and even outside, but the pain would snap back with a spasm and I would find myself sweated profusely, stiffening up, feeling like I couldn't breathe. One day while getting a soft drink I turned to ask a cafeteria worker to carry it for me when a spasm of pain took my breath away. I managed to croak out what I wanted and could barely steer my chair to a table.

Never before had I been compelled to deal with pain as part of disability. I could not stand, could not walk, could not bathe or go to the bathroom by myself. My sense of loss was brought crashing down on my head one day at physical therapy. I had convinced myself that that was the day I would be able to stand by myself again, a sign that everything would be OK, but once at the parallel bars, therapists ready to help, I found I could not even raise myself off the seat cushion. Overwhelmed with grief I cried and cried. The therapists assured me that this was normal, that I could regain my abilities. I didn't want to hear their reassurance. As I was returning to my room my parents happened to get off the elevator I was waiting for. When I saw my mother I grabbed her in a hug and cried, "Mom, I can't stand up."

As my physical abilities had begun to deteriorate I relied on my partner more and more: he dressed me, picked me up from the floor, wiped my butt. I had always relied on him to do things that were difficult for me or that I was too lazy to do for myself, and dependence had often been a sore spot in our relationship, but this was different.

After surgery our relationship changed again. He was my essential support, participating in my therapy, learning how to transfer me, and how to help in every way. Not only had he stayed with me in the hospital that night when the pain was intolerable, he was my health care proxy, involved every step of the way as my spouse and partner, a role respected by physicians, nurses, and therapists.

At home after being discharged from the hospital we had sex every day for a week, sometimes twice a day. The intensity reminded me of when we first got together. During the three months I stayed home from work we spent a lot of time together because I couldn't do much by myself. We were both relieved that I wasn't in the hospital, but I realize what a huge job my care became. He had to put me on a bedpan if I needed it, had to transfer me from bed to my wheelchair, or from wheelchair to toilet. Once or twice he needed to clean me up because I had shit the bed while he was out doing something.

Now, almost a year later, he still helps me get in my chair, helps me dress, puts me on the bedpan in the middle of the night because I can't yet crawl fast enough to the toilet. I am worried about my safety if I do certain transfers by myself and I don't like how hard it has been to do things like shower. But I also worry about him. He has a bad back. Having to rely on someone for this much help has been hard on us both, but in the last month or two I've sensed a change as I feel more able and willing to do things for myself. Still, I feel trapped by what I can't do.

What I can't do—that's what continues to haunt me, all of the things I once could do that I still cannot. Now, almost a year after surgery, it's still almost impossible for me to crawl without becoming winded and needing to lie on the floor to recover. I still don't dress myself; I know it will be so difficult I haven't wanted to try.

The assumption that people with disabilities are always determined, that we make up our minds, strive for our goals, and invariably achieve them is a myth. I am angry, resentful, tired, and scared. At this point I simply want to "be better" without making the effort to get there. I've suffered so much I just want my abilities back, I want it to be over, I want it back to the way it was before all this happened.

With work, a lot of my skills are returning. I can transfer onto and off the toilet. I can stand and walk on my crutches when I do therapy. I get around by myself. I've gone back to work. All of those add up to a huge amount of progress. About six weeks ago I finally got fed up with bed baths and started showering each day with help from my lover. Last week I decided to crawl from bed to shower instead of using my wheelchair. Sometimes it seems as if my body will allow me to accomplish one hard thing but not another: so far I can crawl to the shower but not lift my knee over the lip of the stall—and sometimes I can't stand up from the floor to get into the wheelchair after I have bathed.

The process of recovery and rehabilitation has been difficult emotionally and physically. It is full of contradictions, not the least of which is the sense of accomplishment I feel when I am able to do something, coupled with my resentment and resistance at having to struggle so hard to do such simple things. I've been forced to come to grips with how fragile ability is. Now I know—an unpleasant surprise—how dependent I had always been on abilities that I took for granted and how hard the work of independence will be in the future. I have a lot of choices to make. I wonder if I will make good ones.

Thinking more deeply about myself has led me to think more deeply about others as well. I have gained new respect for people who deal with the pain and changing abilities that are integral to their disability. Since these issues were not my own I had ignored them, choosing instead to believe that being disabled was uncomplicated. Such a purely personal, naïve, and uninformed stance fails to take into account the full range of disability states, and leaves out whole groups of people. I realize now that that's why I sometimes have trouble making connections with people who have lived disability in ways different from my own experience. My view of disability left me ill-equipped to cope with what was happening to me and it has made recovery more difficult than it needs to be.

Disability can engender fear. This insight is a new one for me. What if I can't cope, I ask myself, what if I am unable to "do" a particular set of things? These are anxieties that threaten my sense of self. Will I still be the me I've always known if I need to rely on others for a host of ordinary things?

I'll let you know when I can put on my shoes by myself. Maybe it will happen and maybe it won't.

Don't wait.
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Larry Roberts is a contributor to Bent and a political activist who works as program director for a Center for Independent Living in Ithaca, NY. In 2003 and 2004 he began to experience a significant change in his abilities and a herniated disc was discovered in his lumbar spine. His writing, his activism, and his professional work all focus on assuring that the voices of people with disabilities are brought into the public arena.

BENT: A Journal of CripGay Voices/May 2005