Pain, in its many forms is, I have been told, highly
subjective. The first time I heard this word – subjective - in a context that I
contemplated and applied correctly, was when I was 18. I had been recovering
from foot surgery when my left foot began to hurt – first a little, then a lot.
But what is a lot?
Stabbing, burning, aching, weighted and pounding pain is, to
one person, a minor annoyance and to another a minute by minute journey through
a 24-hour day. The pain in my foot was an ache and was treated with an
analgesic. When that didn’t help I began to rub the heels of my hands into my
brow and think: were my bones healing and I needed to accept that there was
going to be pain? Or was this more? How could I know? Eighteen to a child is
adult; 18 to an adult is child. I was a child/adult/child. I hadn’t lived long
enough to know how much pain a person should take.
When it was finally discovered that the initial surgery left
me with an unhealed fusion, another surgery was performed. My pain was not
relieved. It was not only not relieved, it became worse.
I remember the culmination late one night. I had been
watching T.V. with my mom and dad, my leg in a cast from the knee down. I
remember looking at my toes and wondering if some nerve had been bludgeoned or
cut or sliced in two. As I began to rock and cry and complain, one of my
parents called the doctor. At this time, I still had prescription pain killers.
The doctor said I could increase the dosage but that nothing else could be
done. The next day in the doctor’s office I pleaded for relief.
More treatment followed for this fusion that stubbornly
refused to heal, but even when it did, my pain was still, in my child’s mind,
severe. When the doctor treating me sent me to a psychologist for an
evaluation, my troubled mind, already thick with depression begun years
earlier, wondered if the people around me thought I was crazy, lying, a whiner
who didn’t understand what pain was.
When I at last made it to a doctor who had some clue about
what the condition of my mottled, shiny, swollen and cold foot was, he sent me
to Mayo Clinic in Rochester, MN for a second opinion. I remember when the
doctor confirmed the diagnosis and told me this is one of the most painful of
all disorders or diseases. It has been over 30 years and I can still picture
this doctor’s face as he gave me what, at the time, amounted to a validation of
my being.
I returned home for a lengthy hospitalization. Many things
were tried; some with mild improvement, some more dramatic, all difficult when
mired, at the same time, with depression. Because chronic pain exacerbates
depression and depression exacerbates chronic pain, I felt like I was existing
in an endless cycle where regardless of which one was successfully treated, or
not, a web was being knit from the top of my brain to the tips of my toes and
all I could do was pick at a loose yarn until it became a knot, only to start
to untangle another nearby.
It's difficult to like yourself if you are someone with
depression. And if you are someone with depression who was discounted early on,
as many are, and you wait for your being to be validated to feel alive, as I
did, becoming an advocate for yourself feels impossible.
After months of treatment for my foot pain, my doctor
treating me at the time told me that it was impossible that my pain was not
gone and refused to treat me any longer. And so in my child/adult/child’s mind
I was not only devastated and shocked by his words, but abandoned.
Over the years, many more foot and ankle surgeries have followed
because when you alter one thing, everything else takes note and bends and
sways in ways they aren’t meant to move.
After my last surgery on my left ankle three or four years
ago I started to get cramps in my foot and calf. Annoyances mostly. Though this
past year during a biking class I had cramps so severe in my left foot that it became
locked into place and I swore and cried and screamed. This happened several
more times. I told my doctor, who ordered blood tests and told me my potassium
was a little low. Bananas, water, supplements. Nope. I went back to the
orthopedic surgeon who performed this last surgery. He didn’t seem to know or
maybe he couldn’t think of a surgery to perform that would solve the issue. But
after gathering the data I had for him he referred me to a neurology clinic
after a minute or two of thought.
This was me, advocating for myself.
Recently my husband sat by me while my leg locked into place
and I began to scream. And so last week he accompanied me to the doctor.
Because while I have told my doctor previously about the pain and cramping, and
many doctors before her, it continues.
At this appointment, my husband asked about combining my
health history from various doctors into one place. She said we wouldn’t want
to do that, particularly not my psychiatric records because that would only
complicate things. Of course it would. Because
apparently if you have a mental illness, you are not to be believed. At least,
those are the words I heard. It seems I am, once again, back where I began.
But I am not beginning again, I am continuing on. This is a
story about physical pain, but all pain hurts because it is suffering. In my
half century of life, I have discovered that when you suffer it is because of
loss: lost ability to do something, loss of someone you loved dearly, loss of
friendships you counted on, a lost driver’s license in a purse you’ve owned for
16 years, and the loss of freedom and health and memories and more.
But I have not lost the ability to keep moving forward, and
speaking and writing to make a difference: by speaking out for those who can’t or
won’t, by telling others I won’t be silenced by mental illness, even when the
pain is great in the midst of loss.
