Pain Appraisal

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.