Today I went on a walk before the sun went down, out on the Spring-water trail where it runs by my house. The trail is bounded on one side by a deep, muddy creek and on the other by houses and intermittent industrial sites. The trail is flat, narrow, its pavement punctuated by large banana slugs leaving slimy iridescent trails on its surface. It's a nice place to walk, but can feel claustrophobic and creepy sometimes when the sun is going down.
As I walked, I felt tired, so I decided to turn around after a mile and a half, knowing that I needed to conserve my energy for the next day. Yesterday, I cleaned a very dirty house for money, rushing through the dusting and mopping in order to get it done in under four hours. I did a good job, but today I am tired and feel a little winded walking up even a slight incline. This is my life now: weighing my energy, gauging my willingness to take extra hormones to push through my fatigue and pain or else, deciding to be conservative and rest. It's always a cost benefit analysis. It forces me to live in the moment and check in with myself. It forces me out of the moment into planning and strategy.
Still, my body kept walking.
One foot in front of the other. I'm still amazed sometimes that my body is so resilient. That I can walk without much pain. I'm still amazed that I function, and so often, function very well.
You see, my father broke his hand at work the day before yesterday. A gunpowder-powered tool slammed into his hand, through his glove and skin. He had to get surgery and is home now, in a cast, on pain meds. I mention this because of the pain meds.
A lot of my friends don't know that I was on daily pain meds, opiates, Vicodin, to be exact, for almost two years.
When I found out that my dad was prescribed pain meds. All the usual thoughts went through my head: Will he take all of them? What if I ask him for one? What if I'm in a ton of pain and ask him for one? Will I feel guilty? Will he be angry? Will I have to deal with my own emotions and impulses?
But then after this dark migration of thoughts - I remembered : I'm not in pain anymore. I don't need opiates.
This is what illness does to you. It creates pathways in your brain. Bunny trails of fear and shame.
As I walked back home I thought about my decision to move to San Francisco to go to grad school in 2009. At the time, I was so sick with Cushing's disease that I often walked with a cane. I was in chronic pain and was taking opiates as I needed them, but not every day.
I settled into my new apartment in the Glen Park neighborhood, and I looked up doctors the first week and made an appointment with the first female doctor who could take me. The next week I rode the bus to the large, five-story Kaiser building. For some reason they made me change into a paper gown. Now I don't remember why. While I waited for the doctor, I looked at myself in the small office mirror. My thinning hair was greasy. My face looked flushed. I took my hands and slicked my hair back from my face.
I noticed that the cheap feather earrings I'd bought the day before in The Mission matched the teal paper gown I was wearing. I smiled into the mirror and remembered thinking that I looked almost pretty. Almost, I said to myself. But then quickly tucked the feeling away. I never allowed myself those feelings. How could I be pretty when I was dying? Would I ever be pretty again?
(I only wore those earrings that one time. A bad association had been made. Bunny trails. )
The doctor came in. She was a slim Chinese woman. She was probably in her early forties but she looked younger than me. I was two hundred pounds and looked like shit. I had puffy skin and thin hair. Since none of my old clothes fit me anymore, I wore mostly sweatpants and large men's shirts and crocs. The clothes of a sick person. A tired person.
Now in the bright, paper robe, I felt damn near imperial. My purple cane with the gold flowers rested against the examination table. My royal scepter. This was an outfit that was appropriate to my position in society: the sacred monster.
The thing is, I'd only been there for a week, but I already felt like a ghost in the city. Far away from anyone who knew me, I felt like I could just disappear. Just fade away. Already, I identified with the men I saw sleeping in the park, lying on their backs in the grass, a hat or newspaper shading their faces from the sun. I was tired too. I envied them. Sometimes I would just slump down on the pavement, resting against the warm wall of a bodega. Why had I moved here again? Why was I going to grad school? I seriously wondered: Would I end up homeless in San Francisco? The difference between me and the poor I saw every day was that I had a family that would take me in. And for the moment, I was held aloft by debt.
One day, walking home from the bus stop, I saw a pair of pants strewn over some wild fennel in a ditch. I was amazed to see that they were pants that I also owned, maternity pants that I'd bought from Target because they were the only pants that I found comfortable. They'd been tossed into the fennel by someone. I took it as a sign: I was one step away from total ruin. I began to feel outside of the world. The separation had begun. Not the normal separation that a writer and observer always feels, but a separation from my own standards and expectations for my life. A slipping away. Who knows how far I would slide?
As the doctor introduced herself I walked over to the examination table and sat down. My walk was halfway between a waddle and a limp and I could feel her watching me. We went over why I was there and I began pulling my medications out of my purse.
I didn't ask her for more opiates that visit. I had a bottle full of them that I was taking every other day or so and I wanted to stop taking them. But after the appointment, after I'd gone back to my apartment, after I'd gone through most of those pills, I realized I had no real plan to ween myself off of them. I'd begun to notice withdrawal symptoms whenever I'd go a few hours without them. This was a secondary pain.
And then there was always the real, primary pain. The pain that reminded me I was dying.
So I decided to ask my doctor for more pain medication. At our next appointment, I was tearful. I told my doctor I didn't want to be on Vicodin. I didn't want to be dependent. "But I'm in so much pain sometimes," I shrugged. "well, I can't function."
"I know," she said softly. "Martha, Cushing's is a very rare disease. Do you know how rare it is?"
I nodded and took a tissue she'd handed me. I blew my nose.
"You won't believe it! You are the second Cushing's patient I've had this week. I know a lot about this disease." The doctor paused and smiled at me. "Martha, this is a sign. I believe you're my patient for reason. God has chosen me as your doctor." She put her hand on my knee.
I'd never heard a doctor mention God before (or since for that matter.) I was so shocked by what she'd just said that I didn't know what to say. But I did know that this probably meant that God also wanted me to have Vicodin. Without missing a beat the doctor wrote me a prescription. Did I feel bad that her God delusion ensured me a steady stream of vicodin? The truth is, at the time, I wasn't asking myself those kinds of questions. All I cared about was that, for now I wasn't going to be afraid. After the appointment, I went directly to the pharmacy.
And I was on opiates for a year. It got so I was unable to go a couple hours without them before feeling the effects of withdrawal. I started to realize that the withdrawal I was experiencing was probably worse than whatever pain I was masking. But without actually weaning myself I could never really know for sure, and this scared me.
After my adrenalectomy, I knew it was time to wean myself off. Of course, getting off of them was a difficult process. I slowly weaned myself off with the help of some pain specialists. I was scared the entire time. So scared, to finally let go. Scared of the panic and pain that I'd been feeling for two years every time I didn't take the pills. Scared of looking down a bottomless pit of my own suffering.
I was okay though,at least that's what I kept telling myself. I'd be okay. I'd been cured of Cushing's by that point and was on the mend. I'd already lost thirty pounds.
What finally helped me cut the cord though was that at one point the doctor treating me said, "Martha, we've reviewed your file and we believe you have a psychological dependency." Meaning, I wasn't taking enough at that point to have any major withdrawal symptoms. Meaning it was really all in my head.
They gave me a prescription for slow-release morphine and told me once it was gone, it was gone. After three days taking the Morphine I decided, if it really was all in my head, enough was enough and I dumped the rest of it down the drain. It was over. I felt huge sense of relief as I ran the water and the garbage disposal, I felt victorious over my own fear. Goodbye Vicodin, I thought.
At the same time that I was relieved, I knew that this meant that I now I had to participate in life again. No more avoidance.
Since that moment, once or twice I've asked family members for some of their extra pills when I've had a bad spell. This never felt good. I always felt like if I wasn't careful, I could become dependent again. To say that I've had a rough recovery from my time being sick would be an understatement. I've been suicidal, totally depressed, driven to a melancholy by my pain. My path to well-being has not always been straight.
But, finally, and I'm hoping for good, I've got my medications figured out and I'm now in the least amount of pain I've experienced since I was diagnosed. It's a night and day difference.
So when my dad came home with his pain meds and I felt apprehension and anxiety, I had to remind myself: I'm not an addict, I'm not in pain.
Pinching myself, I had to remind myself that I was going to be okay.
When I got home from my walk today, my parents were still playing the same game of scrabble they'd been playing when I left. My mother was in a bad mood because she was losing. I started cutting up vegetables to make soup for dinner. Everything felt pretty normal and that was a good sign.