The Back Story
June hit like a monsoon. I fell hard into bed while the rain fell day after day. Pain in the muscles, nerves, joints. Slicing pain, knotted pain, burning pain, shooting pain.
I stopped cooking. I stopped shopping. Standing was painful. Sitting was painful. Lying down was painful. Exchanging oxygen with the air around me was painful. I shuffled the half block to Ohno Cafe each day. John and Justin previously bet whether I would want a sandwich (#2, sub soy) or just a coffee. Then, they knew to throw it on the grill when I walked through the door. Those days, that might be the only thing I’d eat.
Pain is a lonesome place. It’s a bed. Or a couch. It’s four pillows under four limbs. It is flexeril, hydrocodone, oxycodone, senna leaf, BCQ, chiropractor, massage therapy, neuromuscular work, and homeopathy. Rest, exercise, sleep, rest, rest.
I had been in love in May of 2009. In love with the air and the sky and the beach and my life. I lived in Portland, Maine. I rode my bike. I took my dog, Whiskey, down to the beach again and again and again. I hoisted my two-year-old friend Hannah into an Ergo on my back, and I carried her for long walking tours of the town. We played. We sang.
Pain is a lonesome place. There are no trips to the beach with a dog. There are no two-year-olds in backpacks. After an insurance-mandated x-ray, I was given an MRI. Each day I waited for results, communication with doctors. I popped pills. I watched bad crime TV shows. And slept. And slept.
Rain, for a month. I canceled a craft fair. Friends drove me to doctor’s appointments. I quit my job. My freelance work washed away. I sent Whiskey, to live with Aaron. Acquaintances drove me to doctor’s appointments. Jared delivered ice cream, someone cleaned my bathroom, and Emily put my bicycle away. My community rose to meet me.
I walked into Wendy’s office, a familiar and comforting place. She was my chiropractor, and I had seen her up to twice a week for the past six years. Usually she commented on my socks. But that day her face was somber. Herniated disc, bulging disc, and stenosis of the spine. “This is your choice, of course.” And she sent me to a neurosurgeon. Thursday ended. Friday. Saturday came. Sunday Mom arrived. Monday. I didn’t read books. I didn’t watch movies. I didn’t knit a scarf.
The appointment was scheduled for 6:15am. Dr. D’Angelo was charming, handsome, and kind. He spoke of his wife’s experience with back pain and her various procedures. He spoke of his
timeline: he could do it the next morning, or after his vacation in mid-July. Mom asked probative questions with a clearer head. I set fear aside that morning for a hope that I could be repaired. There was no choice to be made.
The day after my surgery, Whiskey came up to the living room for a visit and ran in circles on the rug in front of where I lay on the couch. When he simmered down, I stroked his soft ears and gave him a hug with the crook of my elbow.
Mom took me home with her. She fed me and bathed me. She picked up dropped pencils. She took me on walks to the end of the driveway at first, and later to the water.
Rain, for a second month. I paid $476 a month for excellent health insurance. The mortgage on my condo was $400 after my tenant’s rental payment. Six months earlier I had given up my space in The Artist’s Studio building so I could buy the insurance.
Pain is a lonesome place. It’s a brain awash in pain-killers. It’s a distance from others. It’s a perpetual state of self-doubt.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Mel and I became friends over ice cream through the winter of 2009. After spending three weeks at Mom’s house, I returned to Maine aching to
share a pint of Ben and Jerry’s with her. What I found was that she had sunk into the deepest of depressions. I was weak and couldn’t do very much for myself still. Mel was weak and couldn’t face the world. I pulled her over to my house to eat ice cream almost daily. She packed my boxes and moved my furniture. And brought me toilet paper. Sometimes we just sat and kept company. And at times we talked and processed and worked and moved forward. I needed her, and she let me need her. I don’t know that she ever needed me, but she let herself be vulnerable with me. Mel let me be useful in a time when I felt completely and utterly useless. I learned from our relationship that summer that there are many ways to be strong, and many ways to be useful.
Six weeks after my surgery, I moved to Baltimore. During those last weeks I had a yard sale. And in the last couple of days, a group of girlfriends organized to come over and finish packing and clean the apartment. Mel scrubbed the walls with a Magic Eraser. Betsy threw my demarcated piles of stuff into boxes, and she and Diane hauled donations for Goodwill away in a car. I don’t know if the stuff meant for Goodwill made it there, or if my Box Of Crucial Shit made it to Baltimore. But that didn’t matter anymore. The sheer experience of moving, of being moved, and, most importantly, of being held is what will always move with me.
I didn’t know how I would possibly make it in
Baltimore. But I knew if I didn’t go then, then I could never leave Portland. I went with blind strength and a sense of knowing that whatever community I would find there would be as incredible as the one I was leaving. I knew that summer that people have so much to give, and so much desire to be needed. I needed to be needed myself, especially in the face of needing so much.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Pain is a lonesome place. In a new city, in a new community, in a new body, I was groundless. I missed class. I skipped meals. I ate ice cream to comfort myself. I thought I might go days without human contact, worried Whiskey would
turn circles growing mad. But Ellen took Whiskey. For weeks, it seemed. Supisa and Chris came and made fires and worked next to me. Some nights I slept on the couch while they added wood and drank wine. Their presence was vital.
In 2010, a neurosurgeon recommended that I have a series of facet nerve blocks. This is a series of injections, four in my case, into the joints where the vertebrae meet. The procedure is partially diagnostic and partially a pain-management technique. Lidocaine numbs the nerves, and a steroid sits in the cavity for weeks or months to reduce inflammation in the area. I called the insurance company to ensure they would pay for it. They wouldn’t. So, planning to pay for it
myself, I tried another type of injection. I called the doctor’s office three times, until they finally quoted $796. I went back to Maine to have the procedure, because it was about $3000 less than it would have been in Baltimore. When I went to have the procedure, I told the doctor that I would be paying for it myself. He told me that even though they would bill insurance about $800, they would only charge me $150. In the end, insurance paid for the injections.
And the pain returned. I made it back to Baltimore, but slipped back into bed slowly over the next few days. Ellen took Whiskey. I did not go for long walks. I did not screenprint tea
towels. I did not make books. But I slept, and rested. And slept.
So I had the second spine surgery. The operating table lit on fire just before they lifted me onto it. They had started the drugs already. The anesthesiologist took me into another room and stayed with me. I asked him about his family, how he ended up in Maine. He said I would never remember this. But I do. I remember the fire alarms. The flashing lights. The sound of heavy boots of firemen running down the hallway. But I don’t remember caring much. What I do remember is feeling in the next few days like I was watching Mom’s heart beat out of her chest.
Four days later, I was ready for a shower. Mom very gently ripped the bandage from my incision, but the pain and fear were dizzying. My head filled with pins and needles. My body swayed. Mom lowered me to sit on the toilet, but I was unable to drop my head below my heart, as the pain in my back prevented any bending. I fell into a puddle on the cold tile floor, shaking in seizure. I could hear her dialing 911, asking for an ambulance. I could not speak, but I thought, “No, it will cost too much.” They came, and they put me on a backboard. I told them I could walk just fine.
After the first few weeks at Mom’s, I spent the remainder of the summer in Maine again. Physical therapy. Swimming. Nap. Friends. I nestled back
into that world. I cared for Jared and his boys when he dislocated his knee in the pond. I preserved.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
By chance, my friend Supisa happened to come to my appointment with an orthopedic surgeon.While we waited, we played with a scale model of the lumbar spine, complete with discs and nerves. X-rays and MRI scans, stored on the back ledge above my car trunk for months now, waiting for the doctor’s analysis. To me this process was routine. But discussing epidural needles to be stuck into the spinal cavity that coming Tuesday, nerves numbed to assess their
role in the chronic-pain conundrum, was new to Supisa. And I forgot this. I asked questions of when a likely forthcoming spinal fusion should happen in relation to when I would bear children. The doctor’s response: “Well, you can’t have the surgery while pregnant.”
But will I be able to carry a baby? Will I be on bed rest if I wait? If I fuse first, will I be able to have a vaginal delivery? These questions roll around in my head daily. I want the down and dirty. I want timelines. I want a plan of action. I want to feel some security in knowing that I will be okay. I want to depend on the idea that I can lead a normal life.
Because I don’t lead a normal life, not now. I carry Valium and Percocet and Flexeril and Ultram and a big bottle of Tylenol with me daily in preparation for the next bout of severe pain. I may be forced to bail out of any plan at a moment’s notice. I may not get out of bed tomorrow.
I made a pact with myself following the first surgery that I would never use my pain as an excuse when it wasn’t an issue. I won’t lie to you, and I will not lie to an employer on the sunniest of Fridays in mid-summer. I appreciate every day that I am able to stand up without pain, every hour I can sit and work at my computer. And during the times when I fall flat,
I appreciate the ability to breathe and pop pills and watch movies. And to eat ice cream. Everyone develops coping mechanisms for stressful times. And these are mine. Apples with peanut butter for dinner. Ice cream after every doctor’s visit. Crime shows on TV. And lots of breathing.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
And I returned to Baltimore. I was so careful. Everyday. Stretching, walking, swimming, napping. Taking care to take care. Napping, stretching, walking. Eating clean food. Over the course of five months I lost the 20 pounds I gained while recovering from surgery. I was in control.
And still, the fear was there every day. I have grown to trust my gut, to know when to step back. But I don’t know that I’ll ever trust my body. I don’t know, each and every day, if I will be able to carry the laundry, wash the dishes, walk Whiskey. I don’t know each day if I will take Tylenol or Percocet. I don’t know each day if I will continue healing or fall flat again. Too much fear is paralyzing. Flippancy has real consequences.
Again, facet block injections ordered. I spoke with the doctors, the pain-management clinic, the lady at the Hopkins Spine Center, and I debated. I called the doctor’s office and got the medical billing codes. I called the billing center. I called
the hospital. I called the doctor’s office again, and they gave me the doctor’s fees. And I called an associated billing center who was finally able to quote me a price of $756.86, combined hospital fees and doctor’s fees. So I sat on that. I decided that if my level of pain rose to where I couldn’t cope, then there was my option.
And again, the pain. Pillows under knees, another to keep from twisting. I missed classes. I called Krissi and Lauren and Chris and Nick to walk Whiskey. I breathed deeply, and I rested.
I got the shots. Two times actually. The first time, they blocked the nerves running down my legs, the wrong nerves. The second time they
blocked the nerve branches between my vertebrae. A quadrupal epidural, done twice now, was not daunting. In fact, I looked forward to it. I held hope, however hesitant it was. But while the numbing agent felt good for a few hours, that was it.
I installed my MFA thesis project the next week. On the first day I knew that I needed to begin the oral steroids if I were to make it through. And, despite the high doses of ’roids in my bloodstream, I hurt. Bending, leaning, crouching. Twisting, bending, kneeling. I groaned as I worked. And swore. A lot. It helps.
And my community rose to meet me. Brooke
spent five days preparing for install and installing. Ann came everyday. She brought food and offered help, went shopping for materials I needed desperately. She brought cookies. Tony brought cookies. Supisa brought cookies. And the installation. Lauren helped. Jin helped. Ann, Supisa, Mink, Tony, Ellen, Sam. Sandy and Chris M. came. Mark stayed until nearly five am on the last night. Nick walked Whiskey. And Chris C., Ann, and Jin. Support from friends far away was constant. Despite the help, the support, the satisfaction, I was surprised I could stand by the opening.
Pain is a lonesome place. After all of that. After the help. After the moments of witnessing
and understanding. Back in bed the next week, I watched romantic comedies back to back. I slept. I ate more cookies. I rested.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Holding the idea that there is something else I can try, despite the difficulty, gives me a sense of hope. I have hesitant hope. I am not resigned to being in pain. I am fierce. My fear lives in the moment where there are no more options. Where I cannot be soothed, where my pain cannot be relieved any further. I would adjust, again, what it means to be happy and fulfilled. Pain is a lonesome place, but hopelessness is empty.