by Jody Berger
“I don’t know exactly how that hospital works, but call the main number and ask for the patient advocate and tell them the story. That’s outrageous.”
I hung up and looked at the card Kara had given me. It listed phone numbers for the hospital and the director of imaging. Kara had signed in a big loopy hand with a “Thanks!” and a smiley face.
Goddamn cocktail waitress.
I dialed the department director’s line and left a detailed message. Then, I grabbed my bag and left to get that bug spray I still needed for India.
I was home at noon and beginning to clean my house when Silver called. He said he’d heard I had a rough experience at the imaging center and asked if I could tell him about it. “I’d like to know because I refer people there,” he said.
I told him the story. He apologized and moved on. “There are lesions on your spinal cord and the most likely cause is MS.”
“What? Really? I did not expect you to say that.” I dropped the vacuum I was holding and fell back onto the couch. Then I stared at the ceiling unsure what else to say.
Silver jumped in. “If you want to talk about it, I can stay a little past my last patient today at four thirty.”
“Um, yes, I do,” I said. “I’ll be there at four thirty.”
I hung up and called a friend. She wasn’t home, so I left a message. Then I started vacuuming the couch as if nothing had changed.
Within ten minutes, the tingling had spread from my fingers to my entire body. Every bit of me was screaming and shaking and demanding attention. I couldn’t stand up. I couldn’t sit down. I could hardly do anything other than panic.
I called my friend Jonathan, who is a life coach. Crying, I told him what Silver said. Jonathan had one word: breathe.
I told him I couldn’t and that every part of my body was more than tingling. That it felt like an electrical storm running through my entire body.
“Right,” he said, as if he’d seen this before. “Ten billion cells are wondering who’s in charge over there. You have got to breathe. Breathe, in and out.”
Jonathan listened as I inhaled and exhaled, uncomfortably at first. When I settled into an easier rhythm, he said, “Think about your dog. You know how you can direct her to do something?”
Riley, my Australian shepherd, was already at the friend’s who would watch her while I was in India. I pictured her tilting her head when I asked her to come, and I pictured the politician who had come to the door. The poor guy asked for my vote, and Riley sprung on to the porch and peed on his shoe.
“I guess she listens, maybe, sometimes,” I said. “When it suits her.”
“Jody,” Jonathan said. “Use your mind to calm your body. Tell your body to relax. Tell your body you’re in charge and that this is going to be OK. And breathe.”
I did. Jonathan stayed on the phone for a while, and when we hung up, I sunk back into the couch and stared into space one more time.
I wanted someone bigger than me and stronger than me to tell me this would be OK. I wanted somebody to hold me together and tell me I was OK. I could think of only one person who could say anything in a way I might believe. His name was Bruce, and I’d met him too soon after my divorce to start dating and too soon after his. Yet, we had started. A Canadian with homes in Vancouver, London and Cabo San Lucas, Bruce was a charismatic businessman with a belief in Buddhist teachings.
I knew he was in Mexico and didn’t always answer his phone when he was there. I sent an email saying, “My neurologist wants to see me at four thirty. This can’t be good,” and then I continued cleaning the house.
At four o’clock, my friend Rebecca arrived. I didn’t want to go to Dr. Silver’s alone. I thought I might be overwhelmed and wouldn’t be able to take in all that the doc said. I thought I might not be able to drive.
I got in her car and we drove across town to the hospital. Her car is really clean, I thought. It must be easier when you don’t have a dog.
At Silver’s office, we waited a minute or twelve or twenty—it’s hard to say—in the empty waiting room. Last time I was there I had made the mistake of reading Neurology Today, which is filled with stories of horrible neurological diseases and the people who live with them. I mentioned that and Rebecca said, “We won’t do that again.”
A nurse appeared and escorted us into Silver’s office. She took my blood pressure and asked if I wanted anything. I couldn’t think of anything. We waited some more.
Dr. Silver arrived and took a seat in the small room, now crowded with three of us and an examination table.
I have my notes. I have Rebecca’s notes.
Mine are written the way I’d taken notes on any number of press conferences over the years. Or more accurately, the writing—the actual handwriting—is the same. Normally sports press conferences start with the coach or the athlete clearing his throat. “This is a great opportunity for our team to regroup,” “I’m looking forward to the upcoming season,” or “I’m resigning to spend more time with my family.” In sports press conferences, people lead with the banal. The first page of notes could usually be tossed with no loss to the story being told.
Not here. In my notes from December 30, the second line reads: my own immune system attacking myself.
Rebecca’s notes are remarkably thorough. She wrote down my blood pressure, 124 over 78, and a haiku-like version of everything Silver said:
Blood brain barrier
Unique to nervous system
Doesn’t go into brain
And
Diabetes, say,
Would be shown in blood tests
That’s not what this is
And then there’s a line similar to the one I wrote. And it’s just as hideous in either hand: “immune system tries to attack own nervous system—multiple sclerosis.”
At the time, all I could think was, What the hell? That makes no sense. Even now, when I read it, that’s what I think. Really? The immune system attacks the nervous system? Like they don’t know they’re on the same team? That’s fucked up.
Usually with MS, Silver explained, a person has gotten a virus as a child, and the immune system kicked in and did what it’s supposed to do. It creates lymphocytes that attack the virus. When they’ve done their job, and the virus is dead and gone, the lymphocytes go dormant. Then, for some reason, in some people, something triggers those same lymphocytes to spring back into action decades later. They go to work again, only they have no virus to attack. Instead, they attack the central nervous system.
“We don’t know why,” he said.
As frustrating as his theory was, I had no other thoughts or explanations. I hadn’t done any research, because until that moment, MS didn’t affect me as far as I knew. And the return of some dormant attack cells was the story the doctor was telling, so who was I to question him? He was the authority in the room, calling me Jody while I called him Doctor. He wore the white coat, rattled off medical speak and sat before a collection of framed diplomas on the wall. I sat trembling on a small stool with a note pad on my lap.
“The most common primary diagnosis in young women is MS,” Silver said. “Perhaps it’s tied to women’s genetic makeup.”
“I’m not that young,” I said.
“You’re young enough.”
He added that most often MS is a series of active disease episodes, or “flare-ups,” followed by periods of remission. What happens early, he said, doesn’t predict how the disease goes later. Then he moved to discussing treatment.
Silver was already calling the tingling in my hands “a flare-up,” as though there were no question the cause was MS. The way to treat it, he said, was with a short pulse of steroids to suppress the immune system.
“I can’t suppress my immune system and go to a third-world country.”
“Well, it’s not ideal, but I’m a doctor and we work to ke
ep people going in their lives. This trip is part of your life. Let’s talk about it, about where you’re going and what the risk factors are.”
I was flying into Chennai, a city of five million people in the southern Indian state of Tamil Nadu. I was to spend a few days there, tour a few temples and drive to the coast for ten days at the Quiet Healing Center for a yoga retreat.
“Again, it’s not my first choice, but you’re not going to be in any of the big cities so the risk is lower,” Silver said. I didn’t question whether a city of five million counted as big before he launched into possible side effects of the high dose of steroids. Upset stomach, anxiety, bloating, sleeplessness and others.
He said doctors used to prescribe long doses of steroids for MS, but now they hit it hard for a short time and a quick taper. He talked about 1,000 milligrams a day for four days. Although, he said, statistically that’s more likely to cause the side effects.
Because I was about to catch a plane, he prescribed 500 milligrams a day for four days and a longer taper. Then he went through the side effects again. When he got to the sleeplessness part, he flipped to a new page on his pad and, without looking up, started scribbling. “I can prescribe a sleeping pill,” he said.
The sleeping pill scared me more than the steroids did. “Hang on,” I said. “I don’t even take aspirin.”
I had stopped taking over-the-counter medications ten years earlier. One spring the pollen counts reached record highs and my nose ran constantly, my eyes watered and my throat itched. I tried several allergy pills and felt like I was auditioning for the Seven Dwarfs. I went from Sneezy to Sleepy, to Dopey, to Grouchy—or is it Grumpy? Years before that, nighttime cold medications kept me awake for three days, and something that promised to settle my stomach left me so disinterested in food that I skipped five meals. Finally, with the allergy meds, I realized that over-the-counter drugs were not engineered for me. I never tried them again.
My mistrust was even more pronounced with sleeping pills. When I lived in New York, everyone I knew took Ambien or some variation to fall asleep at night. And that’s one of the reasons I left. I didn’t want to live in a city where medication was mandatory. I didn’t think I could. And back in my arrogant thirty-third year, sleeping pills proved that life was out of balance—for others, those folks who took Ambien. Now, ten years later, it seemed my life was the one that was hopelessly and irretrievably out of balance.
Silver didn’t seem to hear me. “Really,” I repeated. “I don’t take aspirin.”
“Neither do I,” he said, and I believed him. He said it almost apologetically, and he looked the type to eat well, abstain from drugs and alcohol, and run a tidy five miles every morning or play squash with his old boarding-school buddies.
“Statistically,” he said, “most people have no reaction. If you were going to have one, it would happen in the first forty-eight hours. It’s tight but,” he looked at his watch, “go to the pharmacy now and we have almost forty-eight hours until you board the flight.”
Rebecca and I looked at the clock: five thirty. The pharmacy closed at six. My flight left Denver International Airport forty-one hours later, at 10:30 a.m. on January 1.
Silver wrote three prescriptions: one for Ambien and two for Prednisone. I still have the Ambien.
Rebecca had one more question: “So, is there anything she shouldn’t do?”
“I wouldn’t do crystal meth,” Silver said so evenly that a moment passed before we registered the joke.
Rebecca forged ahead: “It’s New Year’s tomorrow. Can she have a drink?”
Silver said sure, everything in moderation.
Right.
CHAPTER 2
Solo at Duo
Rebecca and I left Dr. Silver’s office and rode the elevator in silence. We walked to the pharmacy and waited while the woman behind the counter counted little pills into three little bottles. She asked if I understood the directions on how to take them. I nodded and she gave me directions anyway, in an impersonal prerecorded tone.
“Do you want to get something to eat?” Rebecca asked as we walked to the car. “What’s comfort food for you?”
“There’s a great restaurant in my neighborhood, Duo. Do you know it?”
As we drove, I could barely think about what just happened. It was as if the stress was so great that my brain had just refused to consider the conversation with Silver or its implications. And my mind simply refused to acknowledge my fear. All I could think of was food. And I wasn’t that hungry.
No, I craved comfort, and Duo’s roast chicken with smashed sweet potatoes and some kind of warm, wilted greens is as comforting as anything I could imagine. And more than the food, the place was calming. Softly lit and warm with the smells of freshly baked bread, the feel was the opposite of the hospital with its neon lights and harsh voices.
We took a table between the bar and the kitchen, which is open for all to see. And I wanted to see. I cooked in restaurants through college and still enjoyed the sounds of kitchen chatter. Missed being a part of it, really. And for a few minutes at Duo, I could be a part of it. I could imagine myself standing with those men in white jackets behind the line. I could feel the satisfaction of teamwork, the knowledge that three people created three totally different dishes that appeared steaming hot all at the same time. And I knew the game of giving a waitress grief for not being there at the precise moment of triumph.
As I watched the cooks, I pictured my line, the guys I cooked with. Me, Mark and Mark—we were like one of the great lines in hockey, moving as one organism, dishing, delivering and cracking each other up. We didn’t work in an open kitchen, so occasionally, when things were slow, we’d try juggling. All kinds of round things sit in a kitchen so we’d grab a tomato, a grapefruit and an egg—or some other unlikely combination. I didn’t know how to juggle, and only one of the Marks almost did. We giggled like schoolgirls as each of us tried to keep three objects in the air and then pass them to one another. It didn’t matter where raw egg splattered. We were having a ball and we could try again the next day.
While I was sitting and staring toward one kitchen in Denver, imagining another kitchen at another time in Durham, North Carolina, a tall waitress came to our table. I asked for the roast chicken and a glass of wine. Rebecca told the waitress that she was vegan and that what she really wanted was one side dish from one entrée and another from a different entrée. “Would that be OK?”
The waitress said of course, collected our menus and walked away. I felt like I was watching a movie. Like I wasn’t really the one sitting there having just been diagnosed with something awful. Like I wasn’t alone but felt for the girl on the screen who was. Like I was still the girl cooking my way through college, knowing that I could do anything I wanted, once I knew what I wanted.
The food arrived and as we ate, Rebecca talked about her doctor and how she had a great doctor but most people didn’t. “I’m really lucky,” she said. “I have a great doctor—really, really great. And a great dentist too. I’m really lucky I found them. And I have a great massage therapist too. She’s amazing, can heal anything. She’s really good with MS.”
Rebecca chattered about Kathie, the massage therapist, and how long Rebecca had been going to her and how she cured her anxiety and really helped her with anything going on in her body. “I’m so lucky I found all of them,” Rebecca said. “Most people just don’t have the kind of support that I do.”
I stared at her.
She kept talking and I kept staring. I wasn’t the only one feeling the stress from Silver’s office. And maybe most people, hearing that a friend was diagnosed with something awful, would think, “I’m glad it’s not me.”
I wondered how many people would come so close to saying it out loud.
When our food arrived, I took a slow sip of the wine. It tasted summery compared to the chill outside and the hearty roasted chicke
n and root vegetables on my plate. I looked at Rebecca, watched her mouth making words, and wondered how I could be sitting in Duo, knowing that I was completely and unquestionably solo: How come I am so alone? How did I set up my life so that when I desperately need someone to care for me, to tell me it’s going to be OK, I’ve got no one? What was I thinking?
And as my mind moved to answer that question, I had to inhale sharply to cut off an explosion of tears: I can’t have MS. This won’t work. People with MS need people to take care of them. And I’ve got no one. I can’t have MS.
I couldn’t stay with that thought; it was too scary. I looked around the room, looked back at Rebecca and took another sip of wine.
We finished dinner, and while we waited for the check, I took a handful of Prednisone out of the little yellow bottle. Five tiny white pills, each the size of a pinhead. I counted them a couple of times, swallowed them and took another sip of wine. And then some water. Water seemed like a good idea.
When the check came, Rebecca said, “I’m just going to put in five dollars because all I had was vegetables. And water. I didn’t have anything to drink.”
“Oh,” I said, a little confused and mostly numb. I stared at the bill and then at her and said, “Oh, OK. That’s fine.”
Bruce called when we were in the car. “Can I call you back in a sec when I’m in my house?”
“Sure,” he said, “no problem. But call me back.”
Rebecca dropped me off, and when I got inside, my house felt odd, like there was a sheet of glass between me and everything around me. It was cold, and like all of Colorado in the winter, the air was perfectly dry and still. For the second time that night, I felt like I was on a movie set, like no one really lived there.
I made a cup of tea and sunk into the big couch to dial Bruce.
We’d known each other a little over a year, and although we hadn’t lived in the same place or spent more than a week at a time together, he was the one I wanted to talk to. He was the only one. Bruce was big and strong, physically and emotionally, and I knew I needed that.