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.

Four Feet Down

It has been a week of loss for us here at our home in the woods. We are, again, without a beloved shepherd to keep us company. I imagine by now some people are wondering why we don’t cut our losses and adopt a homeless mutt at the local animal shelter. But if you have ever loved a German shepherd you know why that would be hard to do.

 For now, we will remain a one-dog family as a we assess the pain and pick up the doggy-sized pieces. This one all the more painful because it comes with the weight of judgement upon myself. It was only nine months ago that I held my last shepherd in my arms to die after opting to put him down after he bit part of my earlobe off. This week I will be having my third procedure to restore my ear.

 Most people, it seemed, understood the exceedingly painful choice I felt I had to make. And I think most, but not all, understand the heartbreaking choice I made last week.

 Last night I took my first long walk by myself, hands free of dog treats and leash. I headed out the back garage door and down the muddy trail, deer tracks instead of paw prints scattered before me. At the first clearing before our large apple trees on the edge of our farm field I saw a doe and a fawn. As I walked through our neighbor’s freshly mowed path I spotted another doe in the distance. 

 When I doubled back I walked a zig zag through the rows of soybeans, and bounding ahead before a new path cut through the woods with our pull-behind mower, were two bucks watching me. I stopped and froze in place and strained my eyes to see if I could count the number of points these two had between them on their antlers. As I stepped forward, they ran into the woods, trampling down the overgrown weeds and wildflowers.

 When I turned to walk back I was rewarded with a closer look at these two bucks as they seemed to have doubled back before me. I was bending to pick some ripe raspberries at the edge of our property when I heard my husband urgently calling my name. I had lost track of time walking on my own. I looked at my watch and stared at the sky and was shocked to see that it was nearly 9 p.m.

 I yelled back to my husband but he must not have heard my voice, lost in the trees, that make up the forest around the edges of our yard. I walked as fast as I could across the rocky path before me, since my husband’s voice was growing louder and more panicked.

 When I at last reached him, I could see he was not amused. I made a joke anyway and we walked hand-in-hand back to our house, left our muddy shoes at the door and stepped inside.

 There have not been many days over our 27-year marriage when we have walked into our home without being greeted by a German shepherd. 

 Our first, Koryo, we bought without any knowledge of breeders, knowing only that we wanted a shepherd. He lived to the age of 12 and when he died, our whole family, particularly our oldest son, who never lived a day without this dog, grieved. 

 Our next shepherd, my gentle giant named Nitro, died suddenly of bloat hours after I picked him up from the dog kennel after spending the night in Madison. I was by myself and his growing pain was obvious. When I rushed him to the emergency clinic their diagnosis was quick. He too, died in my arms. He was seven.

 It seemed impossible, but less than two years later our next shepherd, Echo, died of an intestinal torsion. We had a surgical team repair it and he spent days in intensive care. He never was the same again, though. He died before Christmas that year.

 And next, of course, my Otto, who helped me accomplish more than I ever thought possible. Had I known ahead of time the hours I would invest to attain a title on this black beauty I would have called him my lap dog, removed his fur saver collar and tucked his bite-sized training treats into a Ziploc bag for walks in the park.

 Zoey was my first female shepherd. All of our dogs have had names ending in “O.” Though we just couldn’t come up with a female name that ended in “O” and so I liked to call her “Zo Zo.”

It is the unique qualities of every person, animal, plant…thing, that make this world what it is. And so for every person and dog who has entered my life, I have become what I am. There are times when this person I am feels lost and alone – without a friend, without a dog, but with plenty of things. After this last week of hurt and loss, I am more apt to invest in my things and leave the rest to, well, rest.

 And I wish I could lose track of my losses as easily as I lose track of time. The hardest losses are those that come in pairs, that we do not expect, on the tail end of mournful eyes who cannot feel secure in this world, as it is. That was my Zo Zo – fearful and scared, except for the moments she was in the presence of my husband and me. Imagine that and make a choice. Our dog, or other people. The weight of judgment upon myself knowing that no matter what, there is a loss.

 But losses make us stronger and pain makes us real and hard choices make us human.  So if you are a human being who has been in pain and made choices and become stronger along the way, that seems about right for most of us. As Anne Lamott said: “Some people have a thick skin and you don’t. Your heart is really open and that is going to cause pain, but that is an appropriate response to this world.”

Throw down your anchor

I have been under the care of a psychiatrist for 30 years. I am teetering somewhere between my eighth and ninth doctor currently. These may not seem like bad odds but when you do the math, this is a lot of changes over a lot of years. 

I have a few favorite doctors and up until the age of 40 I always felt well-cared for: someone had my back, someone was watching out for my mental health, someone cared.

When Dr. H.A. retired I had been seeing him for eight years and his retirement was difficult. He was a doctor that not only cared for my mental health, but checked to make sure I was getting the care I needed overall, because he seemed to understand that when the rest of my body was in good health, then good mental health was easier to maintain.

When I began seeing my new psychiatrist , I just assumed that he would care for me as well as Dr. H.A. The shock to my system was like crashing into an embankment in the night. I struggled to understand why, instead of telling me when he wanted to see me next, he asked me when I wanted to come back. When I shared struggles with him he would make suggestions of medication changes, but mostly left the decision up to me.

These changes, were, at first confusing. He was the doctor and I was the patient; why was he not telling me what to do and instead asking me what should be done? After five years, he left his practice and then came Dr. B.

At first Dr. B seemed fine, but before long I felt he was similar to Dr. V and mostly kept asking when I wanted to return and what I wanted to do.  I was critical and outspoken about the care I was receiving and know, at this point, that my anger seemed to grow over the disbelief that this is the way the system now works.

As we packed up our house to move to another area I knew I would have to find a new psychiatrist. By this time, I had learned, repeatedly, that psychiatric care in the United States had changed and that no longer could a person be expected to see a psychiatrist because they were depressed, but that if you did have the benefit of being under one’s care, this doctor was going to spend as little time as possible with you and leave any and all counseling, and/or emotional consultation, up to a counselor.

How silly of me not to realize this years ago. Of course if you are depressed it is only a chemical issue and why would a psychiatrist need to know if you are under stress or throwing breakable items at a stone wall or cutting your skin or not sleeping or not eating? Am I the only one who struggles to understand that if a psychiatrist does not understand your emotional state or how you are living from one day to the next, he or she cannot possibly prescribe the correct psychiatric medications or dosage to help you?

“This is just the way things are now, get used to it,” I have been told. 

What if you had tried a dozen different diets over 20 years and still couldn’t lose weight, scheduled an appointment with your doctor for help and he said, have you tried counting calories? What if he asked you this without giving you any opportunity to explain what you had already tried and then went on to explain that if you take in more calories than you burn you are going to get fat?

This is what happened at my most recent psychiatric appointment with a doctor to whom I had been referred with accolades. The first thing he wanted to know is if I had side effects from my medications and then went on to explain to me how these medications, antidepressants referred to as MAO inhibitors, worked. I felt my body go into flight or fight mode and stopped him mid-sentence while he continued on with his pages-long, first-year-of-med-school speech to me.

I told him I have been on these medications for 20 years and know how they work; I am not stupid. He went on without pause, discussing things that can happen when you take MAO inhibitors. 

This time my mind went numb and flight or fight would have been preferable to the utter sense of desperation I felt in that moment.

When he asked me about sleep and wondered why I get up during the night, I couldn’t remove the edge from my voice when I told him I never said I get up, just that I wake up. He continued talking until I told him that I was having problems sleeping but not anymore.

He never asked me why I was there and when I could see he was not going to address the real problem I just began telling him what it was. He then asked me if I had additional symptoms. When I told him the stress I had been under, he said, “I meant physical issues.”

Mid-sentence the female assistant sitting in the room on my right hand side said, “Dr. S, you are over time.” This was after 20 minutes. My new psychiatrist spent 20 minutes with me. 

In the movie As Good as it Gets, Jack Nicholson’s character says it best when he says: “I’m very intelligent here, if you’re going to give me hope you’re going to have to do better than you’re doing. I’m drowning here and you’re showing me the water.”

 In the same sentence, I have heard people describe the great suicide prevention initiatives moving into place, while also discussing the crisis in finding psychiatric care. Miss Clavel in the children’s book Madeline had a knack for sensing when something was not right. She would look around and with her Parisian accent, declare, “Something is not right.” I don’t think Miss Clavel’s intuition is needed to see that with the current state of psychiatric care in the United States we are headed for a tsunami. 

 In the midst of mental health professionals, I have been criticized when I don’t instill hope with my words or suggest answers to the crises I bring forth. Sorry about that. If you are someone who needs psychiatric care, throw down your anchor, demand your care, and find a life raft in the midst of ocean liners, or learn to swim, fast, uphill, in the pouring rain.