The nurses in the Pinecrest Neurology IV suite, including Maya, Nicole, and Karen, my favorites, usually glided among patients on rolling stools but the one assigned to me today came springing over like a gazelle. As her tawny curls flew through the air, she knocked against my knees. “I’m so sorry,” she said, blushing. “My name is Adrienne, and I’m new.”
I know, honey, I wanted to say. I know. It was a Thursday in May 2019, and almost twenty years of intravenous infusions to treat my multiple sclerosis meant I could winnow the newbies from the veterans just by sight. First, it was the smock. They weren’t mandatory in the IV suite but new nurses always wore them, usually animal print, and Adrienne’s tumbled with pandas. They also wore Crocs or running shoes, and in her case, hot pink Nikes. On her wrist I spied the requisite Pandora bracelet with the nursing charm, a pair of wings above the letters R.N. Did all new nurses celebrate graduation with a field trip to the same jewelry store?
J.P., my husband of two years, sat beside me in one of the foldout visitor chairs. His eyes didn’t leave Moby Dick, but he reached out and quickly squeezed my left hand. He knew me so well that I’m sure he had sensed my simmering anxiety.
Adrienne took my arm, and then I noticed a filigree heart dangling from her bracelet, and my own heart quivered. Sometimes I wondered if mine had holes in it, too, because even now, after so long, I could still be so cynical.
Be kind, I reminded myself when I saw the shrink-wrapped needle in her basket. You need to get through this, too.
If, at the very beginning of my M.S. journey, at age 31, when my right knee first started dropping out, someone told me what a pivotal role the hypodermic needle would play in my life, I wouldn’t have believed it. Oddly enough, it had actually been that very thing that ruled out everything but multiple sclerosis.
Without any warning, in March 1998, my right knee simply buckled, causing me to stumble. At first I just kept going, babying the leg, and thinking I’d twisted it. The weird thing was that I never had any pain, but my knee didn’t get any better. My right leg lagged behind, and my left leg had to work harder to pull me along. Frustrated, I finally went to see my general practitioner, who ordered an X-Ray. And here the mystery began. The X-Ray showed no abnormality at all.
I was shortly referred to Dr. Michael Garrett, a neurologist on staff at Rex Hospital in Raleigh. The cumulous cloud of degrees in his office told me that whatever I had rose above ordinary disorders. After a cursory examination of my leg, he pulled out the longest needle I’d ever seen, almost four inches long. “I’m going to draw some of your spinal fluid,” he announced. His tone was not exactly grim, but his earlier friendliness had dissipated into the noncommittal tone of a scientist. Then a nurse rolled me over to my side and swabbed my back with a numbing solution. “This is very important,” Dr. Garrett said. “You mustn’t move a muscle.” I felt no sting from the needle; still, I remained immobile, paralyzed by fear.
I knew how serious a needle in the spine could be from a 1989 epidural, or spinal block, during the birth of my son. But then I’d been awash in Demerol fantasies, and if I’d seen the needle, I would have sworn it was a unicorn. Now a cold fright crept across my body. The slight pressure from the needle at such a strange place in my body terrified me. Even after Dr. Garrett withdrew it, I remember lying there for much longer than necessary, away from the white sun in the window and the harsh reality of what was happening to me. What would they find?
I was next escorted to the radiology department for an M.R.I. (or magnetic resonance imaging test). This test would take pictures of the soft tissues of my body, and show things that wouldn’t appear on an X-Ray. Inside the tight tube, I could barely breathe, only drawing shallow, antiseptic-tinged air. Then came the incessant banging – imagine a jackhammer and a megahorn – caused by the vibration of the gradient coils in the machine. Each clamor dropped a note of doom, one after the other.
I fretted and fretted in the week before my follow-up visit, only to be completely disarmed by the broad smile of Dr. Garrett. “Your spinal fluid was as clear as a bell,” he announced triumphantly. This analysis, along with a blood test, had ruled out all the usual suspects, A.L.S. and lupus, and a host of other diseases I had never heard of and couldn’t possibly pronounce.
“So…” I prodded, not sure what to think. If I was supposed to feel lucky, I wasn’t there yet.
“Your M.R.I. shows a few areas of demyelination on your lower spine,” he said.
Yet another big word. “I don’t understand.”
“Myelin is the protective sheath around your nerves.” Then he brought up the possibility of multiple sclerosis. A disease that occurs when the immune system attacks myelin, creating scar tissue in multiple areas, hence the name “multiple sclerosis.” These scars, or “lesions,” interrupt brain signals. This may have been why my knee wasn’t cooperating. It never got the message. M.S. can also cause numbness, tingling, and other strange sensations across the body, he said, and for some people, blindness and cognition issues.
I had heard of M.S. before, but my knowledge was limited to a cheesy movie I had seen back in 1992. For some reason, it had lodged in my head, and looking back, it seemed prescient. In Sickness and In Health taught me that death wasn’t the worst thing that could happen. I could be like the M.S. victim played by Lesley Ann Warren whose husband (Tom Skerritt) burned for a sexy young waitress (Marg Helgenberger) hired as her caretaker. When the movie ended, Lesley Anne’s character cried herself to sleep alone in a nursing institution. The final image of her body wrapped in white sheets, as she wailed, played in my head over and over. Would this be me? I had been married almost ten years by now to Jack, my college sweetheart, but our union wasn’t the strongest. Separate interests had nudged a cleft in our marriage. Could Jack handle being married to someone who needed help with everyday tasks? I wasn’t sure. More importantly, I knew I couldn’t handle being the kind of person dependent on someone else. Not me. No way.
Now Dr. Garrett spoke again, and as he did, he put his hand on my shoulder. “We don’t have enough information to make a diagnosis yet. In fact, what you’re experiencing could be a one-time event. There’s a chance you could get better, and this might never happen again.”
“So this could be the last of it?” I asked, suddenly brightening. He had thrown me a lifeline, and I’d swung into a jungle of hope.
“It very well could be,” said Dr. Garrett.
But it wasn’t.
I inhaled as Adrienne took my arm in her hand. “Where would you like me to go?” she asked. All nurses asked me that, equally out of courtesy and a desire for direction.
“Wherever you can.” The truth was that I hated the IV in my hand because my skin was thinnest there and the needle hurt more.
Unfortunately, my history of infusions hadn’t made my elusive veins any easier to locate. They seemingly evaporated just when I needed them most. “You’re a hard stick,” said Judith, one of the most experienced nurses there. It was not uncommon for one of my veins to simply roll away as the nurse zeroed in on it. Subversive little shits.
But Adrienne saw something she liked in my arm, and she twisted a tourniquet around it, which usually helped expose the vein. This was a good sign.
The needle, less than two inches long, actually held a tiny, flexible tube known as a cannula. Once a vein was punctured successfully, the nurse would retract the needle and only the cannula remained. For the next hour, this little tube would carry the medicine from the bag into my bloodstream.
Natalizumab, or more commonly known by its commercial name of “Tysabri,” was first offered to M.S. patients in 2004. Although it wasn’t a cure – there still isn’t one – Tysabri magically blocks white blood cells from entering the brain and spinal cord. I’d had over 100 infusions of it by now and firmly believed it had kept my disease from significantly worsening. I’m not sure what Biogen, the manufacturer, intended when they named the drug, but “Tysabri” sounded to me like a combination of the words “tiger” and “saber” and over time it had come to represent a fierce guardian against my M.S. Even so, Tysabri required a needle to get to me.
“Here,” Adrienne said, as she stroked my arm gently, “is where I feel the bounce of a vein.”
I liked her instincts. Still, it was way too early to get excited. New nurses often benefited from beginner’s luck, especially if they’d just completed their phlebotomy trials, or as some of them admitted, practiced on a friend the night before. Until I heard the click of the “safety,” which signified the exit of the needle into a disposal container, I knew better than to take anything for granted.
“I believe in you,” I said. Please God, don’t let this vein roll away…
The first “needles” were thin bone fragments used by prehistoric people to sew together animal skins with threads of leather. In fact, the word needle itself comes from Old English nǣdl, an offshoot of the Latin verb nere which means ‘to spin’ and the Greek word for thread, nēma.
The irony of hypodermic needles being both my nemesis and my protector was not lost on me. I’d grown accustomed to the inconvenience and the pain, but even after twenty years I always dreaded an infusion. On the day before, I fidgeted, knowing that the next morning I would be on my way to Raleigh for a needle stick.
The sewing needle, however, was no foe. My mother excelled in embroidery and sewing. As soon as I had mastered the fine motor skills needed to hold a dull needle in my six-year old hands, she taught me to cross-stitch. Later I graduated to making pillows that I monogrammed for family and friends, and eventually she gave me my own sewing machine, and I learned to make placemats, tablecloths and curtains for my first house. The needles for my machine were sharp, but nothing about them scared me. If hypodermic needles represented pain, sewing needles represented opportunity and artistry, the chance to create. While sewing, I had poked myself on more than one occasion, but then I’d seen it coming and it didn’t hurt so much.
The secondary and figurative meaning of the word needle converged both aspects of its origin – sewing and puncturing – and also applied to me. Needle as a verb meant to sew or pierce, or to tease, to torment. Small for my age, I had been needled as a child—ridiculed for braces I wore in my shoes to correct weak ankles and bullied by a bigger boy on the school bus, a budding sadist who sat beside me and leaned into me on every curve in the road. And later, I’d been wounded where it hurt the most by my best friend of all, a more popular girl who turned me over for another friend. Early in life, these experiences taught me just how to turn the needle on someone else. And as an adult, I’m ashamed to say, I quickly perfected the art of wounding, and by my thirties I could pierce others with deadly precision.
As Adrienne steadied my arm, I turned my head. Whoever said that people born under the zodiac sign of Cancer made excellent nurses hadn’t met me. This July baby was naturally squeamish and even after years of infusions, it still nauseated me to watch a nurse stick a needle deep into my skin. I could handle the subcutaneous prick of a flu shot, but the process of an infusion was different. It didn’t help that I also abhorred the sight of blood, especially my own. Once Maya hit a “gusher” and this disaster had me spurting blood at the rate of Dan Ackroyd’s Julia Child impression on Saturday Night Live. Remember the bloody chicken? That was me. Don’t wear your best clothes to an infusion, I soon learned. And never wear white.
Because of my hatred of hypodermic needles, I would have made a terrible drug addict. But I had my own way of escaping the stresses in my life. Shopping for clothes, shoes, and makeup were an obsession for me in my thirties and forties, a habit rooted in a poor self-image that worsened through the years. It was paramount to look as normal as possible on the outside, keeping my diseased body a secret.
“1…2….3…” Adrienne said and then poked the needle into my arm. I barely felt it go in. She was good. Still, I held my breath. Then came the wiggle, the excruciating wiggle as she probed for the vein. This felt like a mouse gnawing on parts of me never meant to be touched. And it was unpredictable, a wiggle here, ah, that didn’t hurt too bad, but oh, my God, the next wiggle was simply tortuous. I put my other hand in my mouth and bit it. No luck for Adrienne. No luck for me.
Now J.P.’s eyes met mine. I thought of our first conversations in late 2015 by the smoldering embers of the fire at a party where he and I had first connected. J.P. had just read Keats for the first time, and was thrilled to finally meet someone who was as fascinated by the poem “La Belle Dame Sans Merci” as he was. He had entered my life at a low point, on the tail end of an unfulfilling marriage, and his friendship offered a welcome relief. We soon found we shared even more interests than poetry. Nature, old books, baking, art, an endless list that magically dovetailed back to each other and culminated in marriage just two and a half years later. His silent but unmistakable presence today eased my mind temporarily, but I knew that getting the needle in a vein would take more than this. I’m okay, I mouthed.
“I’m sorry,” Adrienne said. I inhaled, waiting for the reverse wiggle. And as she withdrew the needle, I thought of that old sewing adage – don’t try to back a needle out through the same hole because it never works.
Yelhsa, I muttered quietly, as I exhaled. This private sound was my own battle cry, something I’d used ever since an elementary schoolmate had told me what my name spelled backward sounded like. I just hoped my cry was buried under my breath, and all Adrienne heard was “No worries.”
She had failed on that first poke, but it wasn’t her fault. I thought of a favorite saying of the Dalai Lama: “Altruism is the ultimate self-interest.” At that moment, I concentrated on how Adrienne must have felt. That first surge of confidence followed by disappointment surely unsettled a new nurse.
I wouldn’t give up on her just yet, but I hoped this wasn’t going to be another four-stick nightmare. That was the record. Once it had taken four different attempts and three nurses to successfully snare a vein. I went home with so many bruises up and down my arms that I wore long sleeves for two weeks to hide them for fear of looking like a junkie or a domestic abuse victim. Don’t think about that.
“I know how tough this is,” I said, yielding my hand to her. Maybe it was time for a vein here, one of the tried and true. Yelhsa. “Do you want to go for one of these?”
That infamous knee drop of 1998 first occurred while building a fence in the back of my first house, the one I shared with Jack and our nine-year-old son Daniel. It was a project I had goaded Jack about for months. When the two neighbors surrounding our house built their own fences, he finally agreed, especially since all we had to do was latch on. And I was right there, helping dig holes for the corner posts and mix the cement to hold them.
Looking back, I realize what a momentous time this was for me. There was my illness, just emerging. And then there was the fence. It symbolized the cocooning of our family – safety. Daniel could play on his swing set, and we could let out our dogs without a leash. But there was another side to that safety. With the fence around our house, I could withdraw inside my own shell, shut myself off to the uncertainty of the world outside its borders. Out of my own insecurities, I judged myself superior to the neighborhood women, too good for the dice game “Bunco” and too good to lounge by the neighborhood pool. I also turned a disdainful finger on the neighborhood children, who, in my view at the time, weren’t smart enough for Daniel. “You should be friends with people you can learn from! Can’t you invite Sam Hoang over to play?” I pleaded. “He’s going to Duke University for summer camp.”
Enclosed within that fence, our marital problems simply amplified. Jack and I bickered frequently; new fences sprang up between us at every juncture. I criticized him for not being like the other men in the neighborhood. While they built patios and planted Bermuda grass, he spent his spare time handling security and throwing disorderly drunks out of Kenny Chesney concerts. We regularly attended basketball games during our college years, but once married, my interest in sports quickly died. As a former athlete, his passion for sports intensified, and he not only watched it, but joined a softball league. My interests forked in a different direction, and I plunged into a regular round of writing conferences and joined a book club with a new group of friends. However, I funneled most of my energies directly into my career.
Since graduating college, I struggled to find a job that would allow me to use my English major and interest in writing. I considered the fields of real estate, travel, and marketing, all while managing what I hoped would be a fluky medical condition. Although Dr. Garrett deferred a diagnosis, he successfully treated my knee drop. He prescribed Solu-Medrol, a high-octane steroid known for combatting inflammation, to be infused over a three-day period. Miraculously, the problem virtually disappeared. My gait appeared almost normal. The only weird thing was that if I walked too quickly, that same leg occasionally lagged behind. But I didn’t care. It would be no cane or wheelchair for me. My recovery was expedited by Solu-Medrol’s side effect of superhuman energy. And it couldn’t have come at a better time. In fact, not long afterwards, at age 32, I finally landed the job of a lifetime as a senior public relations officer and speechwriter for the Department of Transportation.
I ignored the odd little symptoms that flared up occasionally – the numbness and tingling were more vexing than disabling. At times, both my legs felt as if they were encased in thick blocks of concrete, awkward and heavy. I could live with this, I decided. But six months later, fully invested in my new job and more driven than ever, my right knee started dropping out again, causing even more trouble than before. I concentrated my mental powers on my leg, hoping to will it into submission. You will move. You will keep up with me. But it was to no avail.
A new job meant new insurance and a referral to a new neurologist. Dr. Elaine Strickland was whip-smart and capable, if somewhat stern. She too, prescribed Solu-Medrol, but she frowned as she wrote the infusion order. “After your treatment, I need you to get another M.R.I.,” she said, “and then I want to see you two weeks later.”
By the time of my follow-up, Solu-Medrol had done its magic, and as usual, my knee improved. The mental side effects, a weird balloon of euphoria and invincibility, abated my worries, at least temporarily. But Dr. Strickland quickly popped that balloon when she shared the results of my new M.R.I. When compared to my first test, this one showed even more lesions across my spine, and a few spots on my brain and neck.
“What does this mean?” I asked.
“It means we need a long-term treatment for your M.S.”
Whew. I couldn’t say that this news was a complete surprise but hearing an actual diagnosis came as a shock. “So… you think I have multiple sclerosis…”
Dr. Strickland nodded and fell silent, her dark eyes inscrutable underneath thick eyebrows. She offered no sympathy, just a minute to compose myself. Then she launched into a high-level lecture on the four types of M.S. –primary-progressive, relapsing-remitting, secondary-progressive, and progressive-relapsing. By the time she moved to the last form, I could no longer process the minute differences of each one. With the energy of the Solu-Medrol still in my veins, I wanted to run, run like I never had with my legs, run from the words that threatened to imprison me forever. All I knew was this: No matter what type I had, because there was no cure, multiple sclerosis would be with me for the rest of my life.
It was official. Like Lesley Anne Warren’s character in the movie, I, too, had M.S. Because I looked so normal, I kept the news to myself and shared it with only family and my closest friends. I took extra care to make sure I not only looked as normal as possible, but even better, with the latest fashions. I wore high heels, a risky maneuver, because I wobbled and sometimes stumbled. My relapses, or exacerbations as Dr. Strickland called them, were brief, never permanently disabling, but frustrating punctures in the façade of normalcy and perfection I had erected around me. Victims of it sometimes joked that M.S. actually stood for “mystery symptoms” because there was no explaining the freaky things that would happen, and sometimes without any warning at all. Most of my problems concerned my legs, but for two weeks, out of nowhere, I lost sight in my left eye and had to wear an eyepatch, until, just as mysteriously, my vision returned. “Just an eye injury,” I told everyone who asked. “But I’m better now.”
Given the track of my disease, Dr. Strickland decided that I suffered from the relapsing-remitting form of M.S. For the next three years, under her care, I embarked on a wild ride through every treatment on the market—Rebif, Avonex, and Copaxone – drugs that involved subcutaneous injections I eventually learned to give myself. Those needles were friendly compared to the intravenous ones used for my infusions. No vein necessary, just a quick prick. At the urging of my mother, a holistic medicine enthusiast, I tried acupuncture and a consultation with an expert in Qigong who advised meditation and breathing techniques. In the end, however, the only remedy that gave me measurable relief was intravenous infusions of Solu-Medrol, prescribed by Dr. Strickland during the worst of my exacerbations. It worked, but too much was dangerous, warned my killjoy, because it could damage my liver.
I reported to a North Raleigh hospital to receive Solu-Medrol, which was administered by one of two nurses, either Cynthia or James. They both had a good sense of humor and Cynthia argued that she was my favorite over James and vice versa. This running joke helped us all through the challenges of finding my veins. Solu-Medrol’s extra dose of energy came in handy at my new job. In September 1999, Hurricane Floyd hammered North Carolina with devastating floods. It would ultimately kill 76 people and close hundreds of roads across the state. Extra hours? Not a problem. Could you write a speech for the Governor? Of course. Could you fill in for your boss during maternity leave? Count me in.
Over time, my career soared, and I won state and national awards for speechwriting and media campaigns. When my boss came back from maternity leave, she left for another position, and I was named director of the public information office. Still, I wasn’t satisfied. I worried constantly that I might end up disabled, not just in a wheelchair, but worse, carted off to an institution like Lesley Ann Warren’s character in the movie. I was determined to make the most of my working years, staying late to correct speeches written by staff, answering a media pager on nights and weekends, and attending transportation events across the state. As the boss myself, I expected everyone else to work as hard as I did. My need for perfection to cover my disability infested the entire office, and formerly friendly co-workers avoided me. I badgered junior employees over matters as minor as a single word choice in a press release or speech, even criticizing their dress or their taste in music. One Monday during another busy time, I handed Sharon, a woman in our customer service department, a disciplinary warning letter for returning late from lunch. Later I learned that many years before she had lost her only son in a drunk-driving accident, and was late that day because she needed a new curling iron to fix her hair before going to church that night. Thinking about it now, I cringe with shame.
At home, I dismissed Jack’s accomplishments in his own work, and eventually he ceased to share them with me. I spent far too much money on clothes and makeup, things that only temporarily boosted my self-esteem. We both broke our wedding vows, and each affair chipped away at a bond more tenuous every day. And in 2006, when a strange woman called me at home to tell me that Jack loved her now, I knew just where to dig and scrape with my own needle. “You poor thing,” I said. “But you’re not the only one. He has women all across the country.”
“Go ahead,” I said to Adrienne. It would just be easier this way. “Use a vein in my hand.”
She shook her head. “We’ve got to draw blood today. It would go much faster with a bigger vein.”
Every three months the nurses drew two vials of my blood so that the laboratory could run tests for my liver and kidney function and most importantly, the JC Virus (JCV). JCV is a common virus that most people unknowingly carry all their lives, but when combined with Tysabri, it could lead to a very serious brain infection known as PML (short for Progressive Multifocal Leukoencephalopathy). If it didn’t kill, PML could deliver a fate worse than death—a permanent vegetative state. For some reason, I had lucked into falling into the slim margin of people who didn’t carry JCV, which minimized my risk of contracting PML. This meant that I could continue to take Tysabri, but I was tested regularly for JCV as a matter of course.
Adrienne now stared at the vein in the inside of my right elbow. We hadn’t had luck with that one for a couple of years. In the past, nurses had used it for the big draw, but eventually scar tissue built up and made needle entry unbearably painful. But maybe together Adrienne and I could make this vein work.
“So,” I said, trying to relieve the tension. “When is your birthday?”
Six Little Secrets of Phlebotomy
- Most veins have one-way valves about an inch apart. The purpose is to stop the backflow of blood. They’re tough little wads of tissue that can stop a needle and hurt like hell if a nurse tries to poke her way through, and this happens occasionally because they’re impossible to see.
- I do not suffer from aichmophobia, which is a fear of all sharply pointed objects. I only fear the hypodermic needle headed straight for my skin. This is known as trypanophobia, and originates from the root trypano, which means “auger.” Who wants an auger drilling into a vein?
- The nurses in the IV suite always pat my hand after my infusion, when they withdraw the cannula and bandage my hand. A newer nurse in the suite, Deneen, originally from New Jersey, is particularly good at this, and she actually squeezes my hand for a second or two. This little gesture—the touch of a hand—not only feels good physically, it fires off a little endorphin in my brain, sending me off into the world with hope. Through the years this little pat helped soften my judgment, of myself and others, one touch at a time.
- There is no co-relation between signs of the Zodiac and nursing, something I learned when, out of curiosity, I started to ask every new nurse the day and month of her birth. My favorite nurses have been Tauruses, Leos, and Libras. No Cancers. And Adrienne was a Scorpio. I feel bad that I never found out Dr. Strickland’s birthday. Through our association, I wouldn’t say we ever became friends but the frostiness between us eventually thawed. She never patted my hand after an examination but we both would snicker when she checked my reflexes with her little hammer—my right leg would always fly out as straight as a stick when she tapped my knee.
- Karen, a nurse I have known since 2006, chose her profession, she said, simply because she couldn’t dance. But I knew she was joking. Her daughter, on the other hand, is a Rockette.
- A white board in the IV suite is continually updated with new rules for the herd of patients who trek through there regularly. No strong smells or essential oils. Rolling stools for nurses only. Only one visitor per patient is allowed. In my case, one visitor—J.P.—is more than enough. For years I had borne these visits alone, and it was so comforting to at last have someone willing to share this experience with me. He sits beside me each month, quietly reading until a passage from his book stirs him enough to share.
The large man with the easy smile blew into the examination room in a vortex of his own
energy, an air of both insouciance and authority. With reddish brown hair that evoked the fringes of a mane and a confident demeanor, Dr. Doug Miller appeared to me as a lion. Threats abounded, but he wasn’t worried.
It was February 2006, and I’d changed neurologists again. Dr. Strickland had unexpectedly decided to retire. Her timing couldn’t have been worse for me. She had been the one to introduce me to Tysabri, a drug intended for patients who have tried everything else without much success. I’d reaped the benefits for just a year – no new lesions on my MRIs, less fatigue, a better gait. But then two people taking Tysabri died from PML and wham, bam, thank you ma’am, the FDA jerked it off the market. Although they eventually cleared the drug for use under stricter conditions, Dr. Strickland balked. Her fear infected me, and now I didn’t trust Tysabri anymore either. I had started taking another drug when Tysabri was off limits, but it wasn’t as effective, and my chronic fatigue worsened. “I’m referring you to Dr. Doug Miller,” Dr. Strickland announced at our last visit. “He’s a world expert on M.S. and he knows far more than I do.” She then added, with a note of wistfulness. “I think you’re going to like him.”
“What’s this?” Dr. Miller asked. He picked up my book, The Collected Stories of Flannery O’Connor, what I had been reading while waiting for him.
“Any good?” he asked. “I’m on the lookout for a new book.”
I loved introducing Flannery to new readers. “Try this story,” I told him. “A Good Man is Hard to Find is a classic.”
I knew as soon as I saw the shelves in the examination room bulging with old issues of The New Yorker that I was in the company of a kindred spirit. On that first day, we talked about everything—literature, art, travel, food, you name it. Dr. Miller appeared to have all the time in the world for me, and I had never connected more strongly with a doctor in my life. With him, I felt safe enough to finally ask the question that had been bearing down on me throughout my illness. So far, I had coped reasonably well and still walked without an aid. But I had been off Tysabri, my miracle drug, for months now. I balled my hands into fists and tucked them under my thighs.
“Do you think that my M.S. will turn into the progressive type?”
He rolled his eyes, and threw up his hands. And there was that energy again. I felt as if someone had just opened a window and a fresh breeze blew out years of worry from my soul. “Labels,” he scoffed. “I don’t believe in that gobbledygook. My M.S. patients run across the spectrum and each one has their own path.” After flipping through my charts for less than a minute, the lion tossed the thick folder aside. “The way I look at it is this. You’ve responded well to Tysabri. Your MRIs are stable. So you’re going back on Tysabri.”
“But what about PML?” I asked. Dr. Strickland’s fears had come with me.
“You took this drug for more than a year without a problem, and you’re still negative for JCV,” he said. “You’re the perfect patient for Tysabri. But now you’ll take it under my roof. We have our own infusion suite in this very building. This means I’ll be able to keep an eye on you.”
His confidence, that fresh breeze of hope, lifted my spirits. He was an optimist, what I believed myself to be inside, but for years I teetered on the edge of doom, worrying about what the next day would bring. Now, for the first time since my diagnosis, I could be optimistic too. Optimism, I suddenly realized, was another form of courage.
“Here’s something else you need to know,” he said. “The people who cope best with M.S. have two things in common. They focus more on what they can do rather than what they can’t. And they have a good support system at home. How is yours?”
In numerous ancient cultures, from the Egyptians to the Greeks to the Hindu, the heart, rather than the brain, served as the center of the human body—the hub for emotion, will, even reason. The Aztecs actually extracted the heart during human sacrifices, believing that it symbolized not just a person but also a fragment of the sun.
Until recently, it was believed that the human heart doesn’t continue to grow after maturity. However, in an article published in Science on April 3, 2009, a team of scientists led by Jonas Frisén from the Karolinska Institute in Stockholm discovered that the heart actually does generate new muscle cells. The growth is very slow, but this revelation broke new ground for heart disease treatment.
For me, it wasn’t too much of a stretch to think this meant that my own heart—the metaphorical core of my being—continued to grow. Maybe my heart really was filigreed, crafted of delicate silver tracery just like Adrienne’s charm, and maybe that was a good thing. It wasn’t impenetrable; new levels of compassion might continually flow inside, and old, damaging habits might just float away for good. I had held a secret grudge against Dr. Strickland for years for her cold and sudden diagnosis of my M.S. But I realize now that all she had done was confirm the truth.
After nine years in public relations while managing multiple sclerosis, I yearned for a less stressful job. I hadn’t entirely let go of my ambitions, but I tired of the unrelenting urgency of my profession. On a whim, in late 2005, I applied for a job managing marketing for the undergraduate admissions office at a local university. As whims sometimes work, they hired me.
My new job was not without its tensions – we received more than 40,000 admission applications per year – but it did not require carrying around a media pager 24-7. Still, I soon found myself overwhelmed with responsibilities and people to manage. This time, however, I started standing up for myself. In my past job, I never declined a new task or assignment. After settling in and proving myself at the admissions office, I drew a line in the sand. If I received an unreasonable request, I began saying “no.” I declined a full load of admissions applications to review and I rebuffed appointments to new committees outside the scope of my work. And I didn’t volunteer for weekend events more than once each admission season. These decisions allowed me to concentrate my talents on the functions for which I’d been hired, and actually accomplish more.
Standing up for myself soon led to standing up for others. I finally grew into a much better manager. I made time for the people I managed and helped them improve their marketability by teaching them new skills. This job proved to be one of my more successful ventures, and I ended up staying for almost twelve years.
Daniel and I deepened our connection by talking more about comedy and the art of writing, his new passion and a common interest of ours. I also loosened my judgment of his friends. They turned out just fine, and I knew he would, too. I gave my time to people who couldn’t possibly give me something in return, such as writing recommendation letters for former colleagues and helping a friend with a research proposal. I even helped in crazy ways, such as giving a hitchhiker a ride. Turned out that the man I picked up was actually an elderly volunteer minister on his way to his shift at a prison. Perhaps it wasn’t so daring after all, but it felt good to take a different kind of risk and help someone.
I walked slower than I ever had, but for the first time in my life, I found myself breathing easier, and not just because I permanently hung up the high heels. At 48 I finally realized that in spite of all my worries, I had not ended up disabled and in an institution like the character in the movie. The mystery of it all confounded me. Many people my own age had worse health than me. They were replacing knees and hips or enduring cancer that some never recovered from. There were fatal traffic accidents. There were suicides. I was living with M.S., yes, but I was alive. It was time, I decided, to truly live.
The deficit in my support system came to a head in October 2015, when I caught Jack in public with another woman. Although he claimed otherwise, I knew they were more than friends. They looked like a couple, and she appeared to adore him. Once I recovered from the anger and hurt, I drew up the courage to terminate our marriage. He didn’t expect it, as we’d been coasting coolly for years, and he resisted at first. It would be a big change for both of us, giving up a newer house we built, and taking separate paths. But I stood my ground. “You’ll be happier without me,” I told him, and I sincerely believed it. “You deserve more than I can give you.”
Adrienne retied the tourniquet closer to my elbow, and I silently applauded her. You go girl. Why not go for an older, once trusted vein? If it hurt too bad, we could use my hand. And I believed in Adrienne. I looked past the pink shoes and pandas to see something deeper. There was a softness around her eyes and yet, within their dark blue light, there shone steeliness and compassion. I am a nurse, and this is what I do. I give care.
“Take a deep breath,” she said. “1….2….3….”
This time there was no wiggle, no excruciating pain. No mouse gnawing on my arm. I felt a slight pressure, a little more, and again, a little more. Before I knew it, I heard the clip of the safety, and within seconds, I caught a glimpse of my blood pouring into the vial. I would have jumped for joy, but I knew I needed to wait until Adrienne filled both vials and capped the IV line.
“You did it,” I told her. “You broke the spell!”
She blushed, this time out of victory.
“You don’t understand,” I said. I lowered my voice because I didn’t want one of the other nurses to hear me. “No one has been able to use that vein for years. But you did it!”
When she twirled away to mix the Tysabri, J.P. looked up from his book, and as usual, rubbed my free arm. Very shortly, he would crack open a cold Coke from the cooler and we would share peanut butter-filled pretzels. For now, he leaned forward to share a passage from Herman Melville. “There is, one knows not what sweet mystery about this sea, whose gently awful stirrings seem to speak of some hidden soul beneath….”
Mystery. There was that word again. Even after so long, it felt way too early in my journey with multiple sclerosis to say that I was reconciled to it. It still seemed unfair, and, at times, awfully inconvenient, but I had recently come to realize that I wouldn’t be who I am without M.S. And here was the mystery. My illness, my scourge and my archenemy, this condition without a cure, had actually taught me courage, perseverance, and patience. Because of the unpredictability of the disease, I never knew exactly what I would face each day—a new tingle, burn, unexpected fatigue—but these qualities helped me cope one day at a time.
The constant in my life, ever since my diagnosis, had been the hypodermic needle. That sharp and and wounding point, ironically, cultivated something else in me. Tysabri hadn’t saved me. Kindness had saved me. A sharp needle guided by the caring hands of many nurses taught me that kindness isn’t weak. It is strong. And through their example, I had learned the importance of being kind to others and to myself. There was beauty in my filigree heart, with its darkness and its light, and perhaps, like the sea, there was even more to be discovered in my own soul.
Whatever lay ahead, in just an hour, Adrienne would draw out the cannula, bandage my arm and pat it, and I would sigh. Relief, yes, and gratitude. Then I would thread my way back to the gentler world I had built for myself and marvel at the mystery of it all.