by Jody Berger
“Hey, sweetie, what’s going on?”
I told him that there were lesions on my spinal cord. I couldn’t say MS. If I said it to him, or out loud to anyone, I’d be acquiescing. I’d be saying that, yes, my immune system was attacking my central nervous system. Even though I was terrified that this was true, and even though I’d left Silver’s office, went to the pharmacy and dutifully swallowed a fistful of Prednisone, I wasn’t so sure.
Bruce asked the obvious question, “What does that mean?”
“I don’t know.”
Silver thought he knew, and in a state of panic, I was following his directions. Still, I had my doubts. I didn’t really know what the lesions meant. After all, Silver had spent fifteen minutes with me before ordering the MRI and declaring the diagnosis. Fifteen minutes didn’t seem like enough to make such a serious and permanent pronouncement. My immune system attacking my central nervous system? Really? To Silver, that didn’t seem outlandish. Maybe he believed that it was the only explanation for the tingling in my fingers. Or maybe his faith in his education and experience made asking questions or listening to answers irrelevant. Maybe medical school, an MRI and his instincts told him all he needed to know.
I needed more.
I believe interviews are valuable and that good ones take time. I have interviewed thousands of athletes, coaches, trainers and fans over a dozen years as a sportswriter. No one, to my knowledge, ever gave up anything good in the first fifteen minutes. Generally, at that point, the subject was still coming to terms with the idea of an interview, still sorting out, consciously or subconsciously, what the questioner was seeking and deciding whether to help or hinder the search.
“What are lesions?” Bruce asked.
“I think they’re like bruises. He showed me the MRI. He flashed it on a computer screen and he pointed to stuff but I don’t know. It’s like the first time you go to a planetarium and some guy’s saying this is Orion’s Belt and the sword of something or other, and all you see are stars.”
I didn’t want to repeat Silver’s explanation of the image on his screen. I was afraid to tell anyone—especially someone I loved—that I might be sick. I grew up thinking illness and injury were shameful acts. My Grandma Ann lived nearby, and I met her only once, by accident. I knew three grandparents well—had dinner with them weekly and saw them for holidays. But my dad’s mom, long divorced from his dad, was only a name until one day she rang the doorbell. I was in third grade. I had just gotten home from school, and I don’t know where my sister was. My mom answered the door and let my grandma in but told her she couldn’t stay, that she had to leave before my dad came home. I don’t think Grandma Ann was offered a seat. She came into the kitchen, gave my mom a small Torah scroll, said hello to me and left.
When she was gone, my mom told me not to tell my dad. I asked why, and my mom said that Grandma Ann was a sick woman.
Years later, my mom would tell me that Grandma Ann had schizophrenia. And that was all. I never learned about her symptoms, who diagnosed her or what the treatment was. I was only told that she was sick. And at eight years old, all I knew was that she was sick and we didn’t know her. She wasn’t welcome in our house.
“How are you feeling?” Bruce asked.
“I don’t know. A little spacey right now.”
I was afraid that if I told him what Silver said, I would be abandoned, locked out of the house. And with Bruce, I was afraid it might be tough for him too.
His ex-wife had just died. Although they had divorced before she passed away (and well before I met him), they had remained close, and he always looked out for her. He was there for her as skin cancer spread through her liver, lungs and brain. For two years, he was on the phone or sitting with her as she struggled and suffered through all kinds of experimental treatments. Bruce let his hopes ride and fall with hers each time, with each treatment, and always paid the bill. In her last months, as she came in and out of a coma, Bruce sat with her reading from the bardos in the Tibetan Book of the Dead. He read to her every day until she closed her eyes and let go.
She had let go in late October. And now, here we were in December. And I was telling him (or avoiding telling him) that I might be sick too.
Bruce listened to me even though I was talking without saying much. I mumbled around and he listened. He sounded concerned and confused—as I was. Eventually, I remembered that this was Bruce on the other end of the line; that he was solid and knew how to be there for someone in sickness; and that I could tell him anything, that I always told him everything, even when the words coming out of my mouth surprised me.
I remembered that I loved him. I tentatively trotted out the M word.
“There are experts in that field in Vancouver,” he said. “We will get you in to see them. I don’t think you have it. And whatever it is, we’ll take care of it.”
I believed him. Mentally and physically, I believed him. After an entire day of unconsciously clenching my shoulders up near my ears, I felt them relinquish their perch and slide down my back to where they belonged.
I exhaled and heard Bruce do the same.
“You’re not going to India tomorrow, are you, babe? It’s the next day, right? Get a good night’s sleep and call me in the morning.”
We hung up and I looked around the room. The heavy sectional couch that I should not have taken in the divorce was too big for the room, and the framed photo too small on the far wall. I thought about going to sleep, although it wasn’t a serious option. Internally, I was firing at full speed. I could feel my body aching to move, to go somewhere, to do something. I walked into the kitchen as if an urgent task awaited me there, and then realized I could Google “MS.” And as soon as I remembered that Google existed, I felt like an idiot that I hadn’t thought of it before. I had been a reporter—nationally recognized, award winning—and a lot of good it did me in that moment. Writing for newspapers and magazines, I had been dedicated to research and did copious amounts before any event. If I had to cover a Little League game, I would have called the coach, chatted with him and asked for the name of a parent to call. Then I would have dialed the parent, chatted with her and asked for more people to talk to. I might have made six calls and studied stats before going to a baseball game that even the players would soon forget.
I had built a career like that, digging into, exploring and explaining other people’s lives. I would have gone to a Little League game with more information and having asked more questions and collected more context than I had or did before going to the hospital to see Dr. Silver. In prepping to learn about my own body, I hadn’t even done the simplest thing—a Google search.
I went into my office and sat down at the big oak desk, a solid piece of furniture that had once lived in the old Denver Public Library. I fired up my tiny laptop and went to the almost-unavoidable search engine.
Just type in a question and Google shoots out an answer: it’s almost a public service. Yet in moments of rapid-fire insecurity, that beast is dangerous friend.
The National MS Society website said MS isn’t an easy disease to diagnose, that there’s no single test for it, and that the diagnosis cannot be made until the doctor finds evidence of two episodes of disease activity in the central nervous system that have occurred at different points in time.
Wait, two?! I didn’t have two episodes, just one long tingling. Why was it so easy for Silver to diagnose, then?
The Mayo Clinic’s website said that multiple sclerosis is a potentially debilitating disease in which your body’s immune system eats away at the protective sheath that covers your nerves. Great. I must need that sheath; it must be important for something. Why would my body attack it? Why would my own body attack me?
I searched the Centers for Disease Control. There I learned that MS is a progressive and usually fluctuating disease with exacerbations and remissions over many decades. In many patients with MS,
according to the CDC, permanent disability and even death can occur. Awesome. How can I travel around the world to sit in hero’s pose when I might be dying?
I kept searching, and the more I searched, the less I knew. The more I read, the scarier everything became. MS seemed completely inscrutable and could include any number of symptoms: it could mean paralysis or pain or vision problems. It could include weakness, incontinence and a number of other things. The ambiguity terrified me.
As I considered this, the phone rang. I was hoping it was Bruce calling back, but it was Joan, a friend of my friend Jonathan. I’d forgotten he had asked if a friend could call. At the time, I didn’t think to ask who she was, why she would call, or why I would want to talk to her.
And now here she was. Joan introduced herself, in a sweet soft voice, and said she’d heard about my day. I walked back to the living room and sank back into the couch as she launched into her story of being diagnosed with MS when she was twenty-three years old. She was running a division of an advertising agency, playing semipro beach volleyball and training for a triathlon when her feet went numb. No big deal, she thought, and assumed she’d taken a bad fall on the volleyball court.
A month later she had no feeling in either leg. She went to a doctor who wanted to admit her for tests. She had no time and left. And a month after that, Joan returned in a wheelchair. She had lost the use of both legs. That was twenty-three years earlier.
I sat curled on the couch, wrapped in a blanket and wishing my dog were home to comfort me. Because I was exhausted or stunned or stupid (or some combination of all three, enhanced by steroids), I once again acted as if I’d never been a reporter. I failed to ask a single question as Joan detailed her horrifying descent into hell.
My brain was racing along and I couldn’t slow it down long enough to pick anything apart. There seemed to be no opening for me to say, even to myself, “Hold on, why am I listening to this woman I don’t know? Is any of this true? And does it matter to me?”
Joan kept talking. She was a good storyteller. She’d told this story before, knew when to pause for effect, knew how to sell it.
“In the beginning,” Joan said, “I did everything the doctors told me to do.” She told me about the interferon drugs prescribed to alter the course of the disease and how she injected herself on schedule. Even though the sight of her injection sites would clear out the pool, she continued to swim when she could. “Swimming is really good for MS patients,” she said, as if we were in some club together.
She said she’d had annual and awful “flare-ups,” which included bouts of blindness and paralysis until eleven years in, she drove her car into a head-on collision that proved a wake-up call.
In the hospital as she recovered, Joan wondered about taking the drugs and all the suffering. She began to think the two might be related. She told me she had stopped taking her medications and had been symptom-free ever since.
Symptom-free! I didn’t know this woman—couldn’t pick her out of a police lineup—and before she called I didn’t even know I was afraid of going blind suddenly or losing the use of my legs. Now, in no time at all, I went from being panicked, numb and too terrified to speak to being fully and completely relieved. As in, extraordinary, jumping-for-joy, “I could kiss this woman and scream out loud” relieved.
I was ecstatic. I didn’t have to go blind. Didn’t have to end up in a wheelchair. Didn’t even have to take the drugs. Joan had figured out how to avoid all that. I could too.
Her optimism was a world away from the doomsday pamphlets Silver had given me and my gloomy Google search. Joan credited her remarkable recovery to two things—a strict and extensive vitamin regimen and time spent at Sanoviv, a holistic healing center in Mexico. She talked about the extensive assessments they do there, testing for nutritional deficiencies, heavy metal toxicities, physical strength and flexibility. She lavished praise on the wonderfully team-based approach to healing.
As Joan talked about doctors and medications and vitamins and theories, she spoke fast, without breathing, as if this were critical information she was imparting. And with Prednisone sluicing through my veins, I felt like I’d downed a few espressos and was waiting for a few more. Joan could have cranked the RPMs higher still and I would have been right with her.
Joan told me about Dr. Paolo Zamboni, an Italian researcher who had discovered a correlation with MS and blocked veins in the neck. He devised an angioplasty-like treatment. “It’s called CCSVI and it’s the talk of the MS world,” Joan said.
Before I could ask why she was still researching experimental options in Italy if she’d found the answer in Mexico, she asked about India.
“What are you planning to do there?” Joan asked.
“Practice yoga and meditate.”
“Couldn’t you do that in Colorado?”
The answer of course was yes.
“The time in India isn’t what I’d worry about,” Joan said. “It’s all the time in airports, standing and waiting in line, and sitting on those long flights.”
I didn’t disagree. As a journalist, I had traveled all over the world. I had covered surfing in Fiji, adventure racing in Ecuador, diving in the Cayman Islands and the Olympics on three continents. For a dozen years, I flew once a week, sometimes more, and spent more time in airports and hotels than is healthy for anybody. I loved airplanes, taking off and landing in a new place. Airports, however, with their illogical lines and lousy food, had always unsettled me. And now, with a suppressed immune system and untold side effects from the Prednisone looming in my immediate future, airports and even airplanes seemed terrifying.
As if Joan and I were old friends, or even family, we discussed the ups and downs of going to India—mostly the downs: standing in the security line, inhaling other people’s coughs and sneezes, and sitting on two ten-hour flights, breathing only recycled air. After all that, India no longer seemed a safe spot to land.
I wanted to go. I needed to go. I had planned for it and finally had time to go. Yet now, all of a sudden, another quest was taking over. I needed to know what was going on in my body. And Joan had a point too: Could I enjoy India while my mind galloped away on a steroid-sponsored hamster wheel? Could I even try to meditate when my mind seemed to be everywhere except in my body and in this moment? What if my life was going to include sudden bouts of blindness?
Crap.
When I hung up, I didn’t know what to do. Maybe my life would be like Joan said hers was now: I’d get off the Prednisone and take vitamins, the tingling would leave, and I’d be completely symptom-free. Or maybe my life would be like hers when she was first diagnosed, with weeks or months of unpredictable disabilities. I couldn’t go to India not knowing which version the future held. I fell asleep “knowing” I would cancel my flight. I also knew if that felt wrong in the morning, I could make a different decision.
At two in the morning, I looked at the clock and wondered if I should go. At three thirty, I did it again. I stared at the ceiling for a while and checked the clock again. Four thirty. Each time, I’d say I wasn’t going, just to see how it felt.
By sunrise, it felt right. I got out of bed, took a handful of Prednisone and plotted a course to undo my travel plans.
CHAPTER 3
Oh No, Not India
I couldn’t reach Mitra. She was already in India with no phone and no access to email. And she was the reason I was going. She was India for me and now I wasn’t going and I couldn’t tell her.
I had met Mitra five years earlier, when friends invited me on a yoga retreat in Mexico. I’d never been to Mexico, rarely practiced yoga and had never been on a retreat of any kind. I signed up anyway, flew from Denver to Zihuatanejo (a name I could barely pronounce) and drove thirty minutes north to Troncones, a spectacularly quiet town along a strip of stunning white sand and a surprisingly noisy ocean. The group was large: fifteen women, one man, one mother and
daughter pair, and me. Mitra was our teacher.
“I’m so glad you’re here,” she said immediately. It felt sincere and sweet even though we’d just met. And I was the only newcomer. She’d been taking students to Mexico twice a year for several years, and the others were her regular students from Santa Cruz, California.
Still, she hugged me. All five feet two inches of her hugged me. And then she stood back, beaming, with her long, flowing sari and an armful of bangles, and smiling like a little kid.
The next morning, all of us women and the lone guy met a different Mitra, a teacher on task, at eight in the morning in the palapa, a thatched-roof, open-sided studio on the beach. She stood at the front and waited while we settled onto our mats. When we were quiet, she spoke a quick and solemn-sounding line of Sanskrit, which we earnestly repeated.
Mitra then launched into two hours of intense instruction, calling out poses by their Sanskrit names that would have been foreign to me in any language. Bhujangasana meant as much or as little to me as “cobra pose”—which is to say nothing at all. With each pose, I’d look around and try to copy what others were doing. Sometimes, I think I got close. Other times, Mitra would come over and adjust me, physically. As in, pick all of me up by my arms or by my ankles and completely realign me as if I were a Barbie doll. “Better?” she’d ask. I’d nod or smile.
While we stayed in place, sitting with each pose for minutes and minutes and minutes, Mitra talked philosophy. She told us what her teachers had told her—about the body, about the mind, about the universe. She talked about chakras and energy, breathing, and different Hindu deities.
Toward the end of the class, Mitra said something, and everyone around me kneeled and then sat down, between their feet. “Suptavirasana,” Mitra said. Huh? I tried to follow.