On Pain

Dear Diary: Part 1

If you’ve ever experienced the sound of your alarm clock intruding into dreams and shaping them, that can happen with pain. I was dreaming of being hit by a car. Again. I saw my body mangled, because it was the only explanation my mind could give for the pain I was in. I was lying in the street, bloody and broken from the waist down. My eyes snapped open as I woke, but the pain persisted. It had been with me for over six years, and it wasn’t ready to stop.

I rolled over to face the window. On its sill were all of what I consider my essentials; my pills, my Xbox controller, my television remote, and my cell phone. I had finished my bottle of water the previous night. This isn’t a depressing thought if you aren’t me, but this meant that I had to go downstairs to get water to take my Vicodin. I sighed and rolled onto my back. My wife had already left for work, so I wouldn’t have to endure crawling over her. I untangled myself from the blankets and the cold air of winter morning hit my leg. My muscles tightened and my nerves blazed. Crawling gingerly, I made it to the edge of the bed and sighed, my eyes clearing of dreamy haze. I stood up slowly, groaning like an old man. I took my first steps haltingly, my feet barely leaving the carpet.

When I got to the hardwood floor of the hallway, I was shocked to full wakefulness. The cold wood sent pain shooting from the arch of my foot straight to my knee. My eyes widened as I held back a gasp. I turned around to search for my fuzzy slippers. I slipped them on and braved the hallway again. I got down the stairs without too much trouble. I shuffled to the refrigerator and grabbed a bottle of water. When I got back to the foot of the stairs, I had to steel myself. Fourteen steps is something most people never think about, but that morning, it might as well have been a marathon. I could only lift my body with my good leg, so the trip took twice as long as normal, with pauses taken for pep-talks. I got to my bedroom and fell back into our king-sized bed. I took a deep breath and crawled back over to my side and tried to get as comfortable as possible. I shook a pill out of my bottle and chased it with cold water.

I peeked out the window. Thick, wet snow had covered everything. Cold temperatures and high humidity individually make my pain worse, and the combination is brutal. I checked my cell phone to see the time. I still had an hour or so before class. I resigned myself to playing video games until I needed to get going. There was a ton of other things I could have been doing, but I would need to reserve my stamina for those that I had to accomplish. There was always an opportunity cost associated with everything I did since becoming a cripple, so I couldn’t just do things without weighing the consequences. After about twenty minutes, I looked at my pill bottle again. “Did I just take one? With this pain, it doesn’t feel like I took one. Should I wait a half hour to see if the pain level drops? Can I wait a half hour? If I take an extra one, I might be too fucked up to drive to class.” I took another one.

No Known Solution

My problem has been termed idiopathic neuropathy of the left leg, highly focused in the knee and hip. Neuropathy means nerve-related pain or weakness. Idiopathic means no one has a damned clue what’s causing it. Apparently, around 20% of people who suffer neuropathy also don’t know what causes theirs. My neurologist at Hershey Medical, a bright, kind doctor, tried to minimize not being able to diagnose me, saying “Lots of people have migraines, and we don’t really know what causes them. Some people are just in pain.” I’d wanted to punch her in her bright, kind face. I left the building, only half listening to my wife fuming about the ineptitude of doctors. We left the medical complex and I almost laughed when I saw the street name: Hope Drive.

That was only a year or two into my answerless odyssey. The pain started in February of 2007. I decided I had to go buy a cane, because I just couldn’t take walking around on my own anymore. I started going to every specialist I could get an appointment with. I even went down to John’s Hopkins. Probably the least fun I had in a doctor’s office was when I got my electromyography test. I’d had no idea what I was in for, so I had no way to prepare myself. I walked into the small, sterile office and laid down on the faux-leather table. A short Indian doctor came in and asked me to remove my pants. Then, the sadistic sonofabitch jammed needles into different spots of my lower back and leg and ran an electrical current through me. This was apparently to see how well my nerves conducted electricity – the signals were translated into sound like a Geiger counter. For the first time, I could hear my pain. This awful person then had the audacity to tell me to relax when my muscles were tense. My wife sat by the door, wincing for the entire session. When we were done with my backroom Baghdad torture, I demanded ice cream. Of course, this was all done for nothing. No answer for why some days I couldn’t walk down the frozen food section of a grocery store without almost dropping in pain. No insight as to why I was a cripple at age 26. No answers. No cure.

Dear Diary: Part 2

The pain is often at its worst in the mornings, because it’s usually been eight to ten hours since I last took pills. Once I was able to medicate, movement started getting a little easier, so after a few hours I had the fortitude to face life. It was time to leave for class. Had I taken too much Vicodin to drive safely to campus? Probably not. I set my oversized pants in front of the heating vent to warm for a few minutes while I gathered my books. I have to wear them loose, because when I sit in properly fitting pants for any length of time, the waistline presses into a pressure sensitive area on my hip that will cause immense pain. I put on my pants, squeezing my eyes shut as I lift my bad leg to slip it into my jeans. I made it down the stairs, grabbed my cane, and opened the door. The cold wind cut through my clothing and I contemplated staying home, but school was more important. I had to walk through the snow and cursed all the way to my car. Cold, wet shoes will cause my leg extra pain for hours. I was (thankfully) fine to drive to class.

I sat in the cold plastic chair with my jacket draped over my leg to keep it warm. I kept shifting and fidgeting, self-conscious about the creaks of the chair that accompanied my every movement. I accidentally knocked my cane into one of my classmates and I apologized profusely. Not only was I more than a decade older than most of them, but I had to walk around with a cane. How… alienating.

I finished my classes and drove home quickly. My wife wasn’t home, so I tried to take a nap before my work shift. I couldn’t get into a good position, so I just flopped around for an hour. I decided I needed to call out of work. The last time I had gone in to work with pain this bad, my boss had to have a little chat with me. I’d gotten very terse with a student from Sudan because I didn’t have the patience to hold her hand through her seven page paper, and she got a bit upset. Apparently, she went to my boss in tears. I hoped to avoid this mistake again, and thought it would be best for all involved if I shut myself away for the day.

Pain and Perception

When the pain is greater than average for an extended period of time, I slip into a bad two day cycle with my sleep schedule. My leg will hurt so much that I won’t be able to fall asleep until I finally relent and pour myself a drink and take an extra pill around five or six in the morning. This will leave me with only three hours of sleep or so, leaving me exhausted. When I’m tired, I get emotional, and I don’t have the mental fortitude to deal with the pain as well as I normally do. Thankfully, I’ll be so exhausted that night that I will pass out pretty easily.

When I’m tired or in pain, my fuse shortens dramatically. I used to have one of the slowest tempers of anyone I knew.  Now, not so much. On really bad days, I feel like a dog that’s been hit by a car, snapping at anyone who gets too close, no matter how much they want to help. I find myself hoping that people can relate. It seems like everyone gets touchy when they have a headache or other malady; I feel like I should be allowed the same consideration. However, I’ve been this way for over six years. Do people still give me allowances? Should they?

After so many years of being a cripple, my friends and family started running out of sympathy. For the first year or two, they were caring and understanding. They made sure I didn’t have to carry heavy loads, and they accepted it with grace when I couldn’t follow through on the plans we made together. After a few more years, that well of allowances began drying up. They expected me to be a normal, functioning person and to pull my own weight. Hell, half of my friends never knew me without the cane, so they can’t even know what I was like. The non-handicapped David is dead, and to many people who know me now, he never existed. This is what I’ve got. This is who I am. Still, it’s not so bad. My wife married me as a cripple, telling me “Even as less than the man you were, you’re still better than everyone else.” I don’t care if she’s objectively right or not. The fact that she thinks so is enough for me to keep going.

The Most Potent Poison

A week or so ago, I went to my coordinating doctor. We made the usual small talk about how long it had been since I’d last been in (seven months), what had I been doing with myself (school), and had there been any change in my condition (no). He also made the hollow offer of doing the same tests again to see if there had been any change. “I’d hate to just sit around with my teeth in my mouth” he said, but I murmured that I’d have to think about it. More tests would require two things of which I was in short supply: money and hope. I’m not terribly concerned about the money. What really matters is the hope. I have none.

I don’t often tell  people that, because they tend to get a patronizing look in their eyes that’s equal parts pity and amusement at how dramatic I must sound. They don’t understand. I worked hard to destroy my hope once I knew how deeply it was poisoning me. Hope was what was keeping me from doing anything in the present. For the first few years of being a cripple, I would tell my wife, “When I get my leg sorted out, I’m gonna hit the gym like a fiend. I’ll never take my body for granted again.” I would fantasize about getting back into martial arts, or going hiking. I would totally do all of that stuff, just as soon as I was fixed. As soon as the pain went away.

After four years and no answers, I started realizing that there was no light at the end of the tunnel. The pain wasn’t going away. It continued to wake me up every morning and keep me from sleeping every night. I was also continuing to not do a damned thing. I put on fifty pounds and neglected my friends and family. I lived my life in my bed. I was waiting for my life to return to normal, while refusing to accept that this was my new normal. Somewhere in year five, I started killing my hope. Maybe I was inspired by The Dark Knight Rises. In it, Bane gives a stirring speech to Bruce Wayne, saying “There's a reason why this prison is the worst hell on earth... Hope. Every man who has ventured here over the centuries has looked up to the light and imagined climbing to freedom… I learned here that there can be no true despair without hope.” Those words burned a hole in me. I was waiting to restart my life, watching years pass. And why? Because I was afraid of making my pain worse.

Marcel Proust said “Illness is the doctor to whom we pay most heed; to kindness, to knowledge, we make promise only; pain we obey.” I was obeying my pain, and my pain wanted me to lie down in my bed and die. I started fighting that urge. I learned when to pick my battles, but I still don’t know if I’m winning the war. There are costs. The pills blunt my mental edge, but my pain is too distracting if left alone. Too much medication keeps me from activity, but so does too much pain. I have to walk a fine line, and I don’t do it very well. Then, there are the other factors of taking narcotics steadily for six years.

Dear Diary: Part 3

That night, I decided that I needed a drink. I ended up sitting in a bar and drinking with a few of my buddies when another knife of pain drove into my hip. We were sitting on high barstools, which inevitably leads to a flare up. I winced and pulled out my pill bottle. I shook it vigorously and my friend looked at me quizzically. Anticipating his question, I launched into my pat explanation. “When you shake a pill bottle, the pills rub against each other, which creates a fine powder coating on each pill. When you take one, there’s a bit of narcotics ready to jump into your bloodstream without having to be eaten away from the body of the pill by your stomach acid. This will, in a perfect world, get the drugs into your system faster.” I have no idea if this actually works, but it doesn’t really matter – the habit is with me and it will never leave. I dumped two Vicodin into my hand, took one after the next, and washed them down with my bourbon and water. A decade earlier, this would have been the start of a great night. At that point, however, I was just hoping to stave off the end of my stamina so that I could spend some more time with the friends that I constantly neglect. My friend looked at me with a mixture of surprise and pity. Maybe it was me, but I could almost hear the question in his head: “Is Dave a drug addict?”

I didn’t have a good answer for him.