Pain is Just Pain
Inability, Through Surgery, Toward Recovery
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.
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
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
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.
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.
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.
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.
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.
had I endured anything like the surgery and the subsequent recovery
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.
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.
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.
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
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.
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.
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.
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.
I can't dothat'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.
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
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 stalland
sometimes I can't stand up from the floor to get into the wheelchair
after I have bathed.
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 knowan unpleasant surprisehow
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.
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, na´ve, 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.
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?
let you know when I can put on my shoes by myself. Maybe it will
happen and maybe it won't.
© 2005 Larry Roberts
Let us know what
you think of this BENT feature.
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.
A Journal of CripGay Voices/May 2005