Good Luck Cat

by Lissa Warren

  “Okay, there’s one here, but it’s not great. Let’s try it.”

  Alcohol again, and, once again, a miss.

  “I’m sorry,” she said. “I don’t like hurting people. I’m usually good at this.”

  I could tell she was getting flustered.

  “I see one in your wrist that’s not great, but we’ll try it,” she said.

  “The wrist ones hurt,” I responded. “Don’t. Maybe we should just do the rest without contrast.”

  “We have to find a vein,” she said. Her voice had gone flat—all business. “You need this MRI with contrast.”

  It was then that I knew I was in trouble—that they’d seen something bad on the MRI; that a doctor had called my insurance company and insisted on the gad; that whatever he’d told them had made them cave.

  “Okay,” I said. “Do what you need to do.”

  “I’ll try your right hand again,” she said. And this time, somehow, she got it. Within seconds, I could taste the gadolinium in the back of my throat. And just as quickly, it was gone.

  Twenty minutes later the MRI was done and I was on my way home to do a quick conference call before heading into the office. I was craving any distraction I could muster, needing the normality of work.

  I called my mom to tell her what had transpired, and she told me I may have misinterpreted what the MRI nurse had said, and not to jump to conclusions. As a veteran of my father’s medical odyssey and, before that, my grandmother’s, I did my best to take her advice to heart. But things still felt ominous.

  Fall was in the air but the sun was strong, and something about it reminded me of 9/11—how I’d driven home beneath a bright blue sky an hour after the buildings fell, and with them thousands of people who’d started their day thinking everything would be normal.

  As I turned onto my street, my cell phone rang.

  “Lissa, it’s Danielle in Dr. Finkelman’s office. Can you come in tomorrow morning to discuss your MRI results?”

  “You have them already?” I asked, afraid I knew why the radiologist had rushed them.

  “They’re pretty prompt here,” Danielle said.

  “Umm, yes, okay. Tomorrow. But I could also come back this afternoon. It would save me a long night of worrying.” Silence on her end, and then from me: “I’m pretty sure they found something.”

  “Let me talk with Dr. Finkelman and call you back,” she said.

  I went inside and updated my mom. This time she agreed that it didn’t sound good. I checked the clock: almost two p.m.—time for my weekly call with our sales reps. Mom brought Ting downstairs so that she wouldn’t meow in the background. I dialed in on Mom’s landline and put my cell on vibrate. Halfway through the conference call, my cell started to buzz. I went out in the hall and answered.

  “Lissa, it’s Danielle. Can you come back now?”

  This time I took Mom with me for support. We weren’t in the waiting room for more than a half-hour when Dr. Finkelman came to the door himself and motioned me in. Mom and I had already agreed that I’d go in alone. Before I was even seated he said, “Well, you nailed it. You have MS.”

  For most of my adult life, those initials had been an abbreviation for “manuscript.” Now, in the blink of an eye, they would forever stand for an incurable, demyelinating disease in which areas of scar tissue—scleroses—would periodically form on my brain. My brain. That is, if I had the good kind of MS.

  “Relapsing-remitting?” I asked him.

  “Yes,” he said. And, anticipating my next question, “We can tell because some of the lesions are old—resolved on their own—and some of them are active. That’s why we needed the contrast. The new ones kind of glow.”

  “Lesions, plural?” I asked.

  “Yes,” he said. “There are ten of them. There’s a rather large active one on the right side of your brain. That’s why your left side is numb.”

  With that, he turned his monitor around so I could see the scans.

  “To be honest, it’s big enough that I’m surprised you’re walking.”

  That did it.

  “Do you mind if I bring my mom in?” I asked. “She’s right outside, and she’s worried.”

  And she was outside, and she was worried—but by this point, so was I.

  I went out and got her, waited until she sat down, and spat out “It’s MS.”

  Mom looked at Dr. Finkelman and nodded. “Better than a brain tumor,” she said.

  “Absolutely,” said Dr. Finkelman. “Actually, it’s a great time to have MS.”

  Coming from anyone else, the statement would have been ridiculous. But the way he said it showed he knew how silly it sounded, even though it was unequivocally true. He then went on to say there were excellent medications for it—several of them, in fact—and that we’d figure out which one was best for me. He also said it was likely that they’d find a cure for it in my lifetime. But first, we needed to stop the flare that I was having. This was usually done by administering three one-hour infusions of a steroid called Solu-Medrol—a thousand milligrams, given on consecutive days. But because I was small, he wanted me to do three days of just five hundred milligrams each.

  “Okay,” I said, anxious to take action. “Starting first thing tomorrow?”

  “I’d like you to start today,” he said. “I can write you a note for work.”

  “Oh, no need; they take me at my word. Besides, I never take my sick days.”

  “Infusion it is, then,” Dr. Finkelman said.

  Most hospitals have infusion centers for this kind of thing, but by then it was almost five p.m., so the emergency room would be the only option. Dr. Finkelman informed me that, although his office looked unassuming, he was actually the head of neurology at nearby Merrimack Valley Hospital. He would call and tell them to expect me.

  It was there that I had my fifth and sixth needle sticks of the day—with six being my ticket to Solu-Medrol-ville and, eventually, remission.

  Once I got through my first MS flare, the enormity of it started to sink in.

  MS doesn’t mean a shorter life span, but it does mean possible blindness (usually temporary, usually one eye at a time) and potentially the loss of mobility (a third of people with MS are unable to walk, and some of the two-thirds who can need an assistive device like a cane or a walker). I firmly believe I’ll be part of the two-thirds, and that I’ll still be walking on my own when I’m eighty. I firmly believe I’ll be lucky.

  In fact, I believe I’m already lucky. To go from symptoms, to neurologist appointment, to MRI, to diagnosis in less than twenty-four hours is fortunate indeed. MS is tricky. It takes some people months, even years, to get an accurate diagnosis. It can be easily dismissed as a pinched nerve or fibromyalgia, and there are lots of MS mimics like lupus, Lyme disease, and stroke. And some people have to undergo a painful spinal tap to get their MS diagnosis. All I had to do was lie still in a tube for a bit.

  I’m also lucky that I found Dr. Finkelman, who was up on all the latest medications, and quick to rule out ones that could have serious side effects (like liver damage, miscarriage, or brain infection) or lesser ones that would be especially upsetting to a woman my age (like hair loss).

  He started me on Copaxone (official name, glatiramer acetate), a daily subcutaneous injection that lessens the MS relapse rate by 34 percent, though no one seems to be certain how. Dr. Finkelman also helped to arrange for a nurse named Annie to come to my house to show me how to administer the shots using a pen-like device called an Autoject.

  The injections are honestly no big deal, and I say that as someone without a lot of fat to stab. I just turn the dial to four (the shortest needle depth), aim, and fire. If you were to watch my face when I press the button, you wouldn’t see my expression change. If you watched my body, you wouldn’t see me flinch. Some people compare it to a bee sting, but it’s honestly nowhere near that bad. I do develop a welt after each injection—kind of like what you get after a mosquito bite, but bigger. It’s gone,
however, within a day or two, and supposedly after a few months of being on Copaxone, you pretty much stop getting the welts altogether. Even if I don’t, they’re a small price to pay for 45 percent fewer lesions.

  Dr. Finkelman also had a knack for anticipating my concerns and questions—and amusing me in the process. For example, when he told me the largest lesion was “tumefactive,” he was quick to say “Bad name, that. It has nothing to do with a tumor. It just means it’s big.”

  When he asked me my ethnic background and whether I had any family history of MS, he followed with “Don’t worry. Doesn’t mean your kid will have it. There’s a slight genetic predisposition, but environment also plays a role. People in cold states get it more often, and people of Northern European descent, especially the Irish.”

  “Not much I can do about that,” I said. “Mom’s maiden name is McKittrick.”

  “Be more Jewish,” Dr. Finkelman quipped.

  Despite how good Dr. Finkelman was to me and my complete trust in his abilities, all of my friends told me I should try to find a neurologist in Boston as well. My bluntest friend, Karen, said it best: “People fly from all over the world to avail themselves of the doctors who practice at Boston hospitals. You’d be an idiot not to. Go to Brigham and Women’s; they have a whole MS Center, complete with an infusion room. Try to get in to see Dr. Howard Weiner. He’s Ann Romney’s doctor—and you know she goes to the best.”

  Sometimes luck is having friends who, when the chips are down, do your crazy medical Googling for you.

  I figured getting an appointment with a VIP doc like Weiner would be next to impossible, so I emailed my colleague Merloyd for advice, recalling that she had some connections to people at Boston hospitals, having edited health books by such luminaries as breast cancer surgeon Dr. Susan Love (the first woman surgeon on the staff of Boston’s Beth Israel Hospital) and pediatrician Dr. T. Berry Brazelton (who established the Touchpoints Center at Boston Children’s Hospital). If she didn’t know anyone at Brigham, no doubt she’d know someone who did. I was determined to network my way to good health.

  Merloyd got right back to me to say she did know someone at Brigham, and that, actually, I did too. A decade ago I’d handled the publicity for a book she had edited, Human Trials by Susan Quinn. It was about a wonderful doctor at Brigham who was trying to find a cure for MS—Howard Weiner. She’d try to help me get in to see him.

  As soon as she said it I recalled the book, of course, and before I could even finish a thank-you e-mail, she had emailed the author, explaining my situation and cc’ing me. Within ten minutes, I had a reply from the author saying she’d written to Dr. Weiner on my behalf. And within a half-hour, she forwarded his reply. He’d cc’d his office manager, Marilyn, asking her to schedule me when I called. I was in, and, again, I was lucky.

  Merloyd wasn’t the only colleague I told about my diagnosis. In fact, I told most of them—especially the ones I had worked with for years, including my boss. I didn’t want the added stress of trying to cover up my illness, and I’m not, by nature, a person who likes to hide things. Besides, these people were my friends; I’d worked with many of them for over a decade.

  They were all unfailingly supportive when I told them. One of the women in my department left flowers on my desk; the other left a brownie from my favorite bakery down the street. Both of them told me to just let them know if I needed any help, personal or professional. My counterpart in our marketing department gave me the name of an ophthalmologist his wife once saw for optic neuritis, just in case I ever needed it. A member of his team told me her dad and stepmom both had MS, and gave me a book about it that she’d been saving for them. She also told me they were doing really well—still walking unassisted, many years post-diagnosis—and her dad was on Copaxone, which he found to be effective and exceedingly tolerable.

  To this day, I remain bolstered by stories of MSers who are doing well. And I’m amazed by the number of people who know someone who has MS, even though, according to the data I’ve seen, only one in 400,000 Americans have it. Only one in every 1,000 of those people have the tumefactive kind that I have, which means I should either play the lottery or definitely not play the lottery. When I told my friend Beth that I’m one of only 400 people in the United States that has tumefactive MS, without missing a beat she said, “Well, Lissa, we always knew you were special.” She laughed when she said it, of course—and I did, too. She’s an only child, like me—and we always think we’re special.

  I told other friends, too. My writer friend Annie mentioned a buddy of hers whom she refers to as “my friend who has MS who I always forget has MS.” That’s what I want to be. I don’t want people to think of me as a sick person, because I don’t really think of myself that way. Not yet, at least. I’m not naive; I know this is a progressive disease. But I’m optimistic, and not afraid. I have MS, but it doesn’t have me. It’s clichéd, of course. But it’s accurate.

  Right now, unless you’re staring at my MRI scans and the parts of my brain that look like they’re covered in snow, my MS is an “invisible disease.” That’s both a blessing and a curse. It means no pity from friends or strangers, which is awfully nice, but sometimes it also means little help or understanding. I wish the people who know me best could have MS for five minutes each, preferably during the flare stage (when people with MS are at their worst), just so they’d know what it’s like to try to walk across the room gracefully when you feel like you’re balanced on a skateboard that’s balanced on a boat—a boat that’s spinning on a lazy Susan—with one-gallon water jugs strapped to your calves. People have asked me what having MS is like, and this is one way to describe it.

  It’s like trying to walk along a beach where the uneven sand exhausts you, or across a field that’s covered in a foot of pristine snow—except, of course, you’re on asphalt, or the carpet in your own home. It’s like trying to walk from the bar to the ladies’ room after having one too many glasses of Shiraz, your balance off, your limbs heavy and unpredictable, and every move requiring the utmost concentration, just so you’re not that girl who face-plants in the bar or, God help you, “that poor girl with MS”—the one who should know better than to wear heels … who does, in fact, know better, but isn’t quite ready to give them up. Suffice it to say I don’t drink, though; my body feels drunk enough. Speaking of which, even stone-cold sober I’d fail a field sobriety test these days. People with MS have trouble walking heel to toe, or balancing on one leg. So here’s hoping I don’t ever get pulled over, and that, if I do, the cop is really understanding.

  Despite all the downsides of MS, there’s something about the disease—any disease, maybe—that makes a person more attuned to how others are struggling. I see a man with a pronounced limp navigate a loosely cobblestoned sidewalk, and I know how much stamina and body awareness it requires to do something most people totally take for granted. I think, “My God, he’s amazing”—that someone should applaud, or that tomorrow’s Boston Globe should carry the headline “Pedestrian with Gait Issue Conquers Farnsworth Street.”

  When I see people pull into a handicapped parking spot, I no longer think “They better really need it.” I assume they really need it. Sometimes I watch to see if they also need help. I’d like to think that, if they did, I’d try to help. If they waved me off, I’d say, “It’s okay; I get it. I have MS.” I’d like to think that would do it—that they’d let me help them out. This club we’re in: It’s crappy, and none of us signed up. But everyone in it speaks the same language, and we have each other’s back.

  More than anything, I don’t want my MS to become me—to become an excuse to be selfish or self-involved.

  I’ll never forget the man at the Brigham and Women’s MS Center who so gallantly struggled to hold the elevator door for me the first day I went to see Dr. Weiner in his second-floor office, almost knocking his walker over in the process, and the smile we exchanged when we both reached out to press “2.” Or my sales rep friend, the first person i
n our New York office whom I told about my diagnosis, who did a double take and said, “You’re kidding. Me too.” Turns out he’s had MS the whole time I’ve known him—more than fourteen years. Or the man I met on the Acela coming back from a business trip, who somewhere around Providence mentioned in passing that he had MS—literally in passing, because he was on his way to the café car to get us peanut M&Ms, even though if you have MS, walking on a moving train is harder than getting into Harvard.

  How many other people with a chronic illness have I always just assumed were healthy? How many could have used a door held open for them, or some peanut M&Ms that they didn’t have to go and get themselves, or a word or two of encouragement, like I got from my sales rep friend, who listened intently as I described my wobbly walking, and emailed me the next day with a simple Teeter on!

  There’s a certain camaraderie among people with MS—an “us against it” mentality. That’s why I signed up for the MS Center’s CLIMB study (Comprehensive Longitudinal Investigation of Multiple Sclerosis at Brigham and Women’s Hospital), in the hope that, by charting the progression of my disease, some knowledge will be gained for the benefit of us all. A couple thousand others have signed up to do the same thing.

  So there are at least two thousand people in the Boston area who have MS. Why am I one of them? Rather than think “Why me?” I prefer to think “Why not me?” Why not someone who is otherwise healthy? Why not someone who has people who care about her—people who will, if necessary, take care of her? Why not someone who has good insurance and can afford this disease (MS tests, infusions, and medications aren’t cheap—and the MRIs cost an arm and a leg, especially when they include your spine)? Why not someone who is smart enough to understand the things her doctors tell her, and to do a bit of her own research besides? Why not someone who took years of dance lessons—whose balance is good, and whose body naturally compensates for its own weaknesses? Why not someone who thinks of her MS in metaphors involving beaches and wine and fields of snow—someone whose idea of a great Friday night is a good book to read and a cat who’ll use her ankle as a pillow while she reads it? Why not someone who won’t miss hiking, or skiing, or going for a run, because she’s not someone who ever did those things?