Photo by Katherine Kromberg on Unsplash
I didn’t prepare for this.
I thought I was just gonna help someone out—you know, throw somebody a bone, when in mid-April 2014, I reached out to the University of Colorado at Boulder for a study looking for people with Multiple Sclerosis.
That meant me. My brain? It lit up like a Christmas tree, and my left temporal lobe was the star at the top.
Sure, spots speckled across my motor cortex, one in my cervical spine, and one by my right eye. But the monster in my temporal lobe fucking scared me. I was a musician, an artist, a writer. I was gonna be a doctor—I couldn’t lose what was there. My brain was important. My reason to live.
So I emailed the department about the study. I more than qualified—I was a dream subject. Actively sick? Failing all the steroids?
They got me in right away.
I drove up on a beautiful, sunny Wednesday morning, determined to be the best test subject they’d ever seen. I’m not sick. My brain’s just eating itself.
My body didn’t look ill. I was only twenty-five, finishing my degree and ready to move to California. I had art on my walls, music under my belt. I was fucking funny. I’d just finished six novellas of a fantasy saga, never having written anything like that before. I had my whole life waiting for me—my husband, and our future, waved on the horizon.
The building was brick, somewhat old and a little dingy. Guess I thought UC Boulder would have it all. Instead it was a hole, just like the hole of a lab I once worked in. It didn’t bother me. Poor kids. Someday they’ll do real research, with real sick subjects, who need real help. I’m just a smart, young, MS-ridden chick.
I sat at a cold metal table, across from a guy who had thick-rimmed, black glasses. He pulled out a test I once saw my psychologist husband give kids. It looked like a game, with red and white blocks, diagrams, and little pictures with all major geometric shapes.
Easy. It’s like a rudimentary IQ test. I’m a fuckin’ genius. I’ll ace this shit.
The questions got harder. Is that where the red side goes? No, that one’s longer. It’s supposed to be a square. I got all the shapes but he was timing me, so I rushed. Complete the sequence—is it B, or D? Dammit, I got that one wrong. I know it’s wrong. Why didn’t I do it right?
The shapes barely hinted at what was ahead. There were memory tasks—quick, what were they again?
“I… I can’t remember. I know you said car make, and I said Mercedes. That’s one of them, right?”
He didn’t answer, just kept going down his list.
Fuck. I’ve given this kind of memory quiz. Why do I feel like such an idiot?
The last little test on the table was one I chuckled at when he pulled it out. It was pictures—cartoons, even—drawn on small cards. All I had to do was say what they were, match the categories, or describe what they meant. A child’s test.
What the hell does this have to do with fatigue?
They weren’t complicated. Roller skate. Stroller. Bicycle. Hot air balloon. Each of them rolled off my tongue. They’re all shoes. They’re all animals. They’re all yellow.
I think that’s what they all were. Now, years later, it’s all a blur.
But I remember the one. The one that stumped me. The one that sent my whole fucking world crashing down.
He displayed a new picture with an item to name. It was curved. Had a handle. The handle was hooked. It looked like a tent, but that wasn’t quite it. Many words floated into my head. Weather. Rain. Water. Protection. I knew one in particular, panacea, was there because it was in the lyrics to a Sheryl Crow song—a song that used the lost word in the first verse, but “panacea” was in its place for the second.
I know this word. I know what it is. I can see it. I know I have one in my car. It’s black. I know my cat likes to chew on the plastic. I hardly ever use it, it snows more than it rains. I know if it were raining and I had one of these, I would wear my galoshes. My poncho. My raincoat. I know how to draw one, and where one can be bought. I know if you open one indoors, it’s unlucky.
But the label escaped me. And right at that moment, I was hit by a train. I’ve lost this word. It’s gone. It’s in that 3.3cm hole in my brain. The hole in my brain that means—I’m not the same.
Heat and an itch rose in my cheeks to my eyes. I was angry, dejected, disappointed in myself. I thought about all the things I had accomplished and how this might mean I could lose everything.
The grad student across the table showed me the ticking stopwatch. I had to say something.
“I don’t know. I can tell you a lot about it. I can define what it does and what it’s for. But I’ve lost this word. I’m sorry.”
He moved on, probably unaware of my panic and helplessness. I wanted to ask him what it was, but I was embarrassed.
I can’t remember a child’s vocabulary word.
The rest of the test was no better. I thought all my left-leg numbness was just that—a sensory problem. My motor function is fine. But the next task only got worse for me. I lifted my leg and watched a ball on a screen, trying to keep it in a straight line. I couldn’t. I fatigued quickly, seconds after each lift. They had me repeat it, time and again; my right leg, while stronger, couldn’t do what they asked. I looked down to my feet.
Are you gonna crap out on me, too?
***
I first suspected something was wrong in the Fall of 2009, when my body was plagued with nonspecific symptoms. I took a class on adult speech disorders, and the opening unit was on Multiple Sclerosis.
On the first day of class, I was distracted by dizziness, shaking, and nausea unlike anything I’d ever felt. The second week was no different.
The third week, a classmate asked from four rows behind me, “How do you not go home and think you have this? Now I’m convinced I have MS, but I’m probably fine.”
My charismatic professor was poignant and encouraging. Hands on her hips, she said, “This is a common phenomenon in medical students, or anyone learning about these diseases. Don’t go home and think you have this. You don’t.”
I took it to heart. I don’t have MS. That’s crazy. I already have so much wrong with me already—hearing loss, anxiety, depression, PTSD. I can’t have a degenerative brain disease; I’m twenty-one, healthy, just a little stressed out.
Five years later, I proved her kind wisdom wrong.
On a cool Monday morning in late February, I woke with a twisting stomach ache. I missed work and spent the day cleaning. Preparing. For what? I wasn’t quite sure.
My husband, Steve, came home to the sparkling apartment. “You need to learn how to relax.”
“I know. But I can’t relax in a dirty place. Something told me I needed to clean, so I did.”
My stomach continued to hurt through the night. I rolled over in bed at 4 a.m. Tuesday.
That’s weird. My whole left leg feels asleep.
I woke up to shower—why isn’t it changing? Did I pinch a nerve?
Donning my gloves, my thick coat and scarf, I got in my car for the long drive to work. My left leg is a little bit numb—that’s okay. It’s nothing. My right side is fine, I just slept on it wrong.
So I tested some patients until the lunch hour and sat at my desk, which was pressed up against the back wall. I wiggled my toes.
Fuck. I can’t feel my right foot. This is upper motor neuron shit, right here.
I texted my sister.
Me: I’ve lost feeling in my left leg
Her: Haha
She thinks I’m quoting City Slickers, for Christ’s sake.
I called a neurologist as my sister wasn’t helping and got no answer. I left a message, “Hey, I lost feeling in my left leg this morning. And since my legs are kinda important to me, I’d like to make sure if it’s something reversible that I get checked out before it’s permanent, ya know? So please call me back and tell me what to do.”
They never called back.
A friend said, “It’s probably nothing, you nut. You’re just stressed out. You have lots of job interviews coming up, right?”
That’s right, I do. As long as nobody asks me, “Can you feel your left leg?” I should be okay.
By Friday morning, when nothing changed, I panicked. Enough. I know what this is. I called out and texted my sister again.
Me: I’m going to the ER
Her: ?
Me: I still can’t feel my leg
Her: Holy shit you weren’t joking?
She called me. “Margo, are you serious?”
“Yes. I’m driving there now. They just opened a new hospital down the street.”
“Um...I’m getting off work. I’ll meet you there.”
“Thanks, Rose.”
I texted my husband and told him the same, and walked into the sparkling-new ER department. “Hi. I woke up this week and couldn’t feel my left leg. I still can’t feel my leg. I think I have MS.”
“Okay, please take a seat.”
I slipped on a flimsy paper gown after admission. My ass was showing, my modesty shot. I was horrified that I’d shown up in my granny panties.
Of course, the young male doctor in the ER was cute. He was very kind and asked me questions. I gave him the run down as I’d done with people all week, slapping the skin on my calves when finished. He reached over to the table at my side for some tools.
He took a long medical swab from the drawer, broke it in half and splintered the wood, then poked down my left leg with the pointy end. “Can you feel this?”
I could feel pressure, so I said, “Yeah.”
His brow furrowed and he kept moving. “And here?”
“The same.”
He checked my foot and poked at the heel. Then he poked at the pad beneath my toes.
“Ouch!” I retracted my foot.
Shit.
“Yeah...the sharp? No way. I wasn’t feeling that at all.”
The doctor repeated the exercise for my right side, only numb on the foot and just past my ankle. He typed in my chart, ordered tests, and called in a nurse. I went for a blood test, a urine sample, and an ultrasound of my femoral arteries. Finally, they ordered an MRI, just as Rose arrived.
The nurse turned to Rose. “You might want to find something to do. This will take a while.”
“How long, do you think?” she asked.
“We’re going to look at her brain, neck, and spine. It will be close to two hours.”
I protested, “Two hours? When I watch House they’re only in the machine for like, a minute. Fuckin’ liars.”
Rose gave me a deer-in-headlights look, which she always did when faced with the uncomfortable. “I’ll see you after.”
They instructed me to lie still in the machine, told me it would be loud, and I gave a lesson on how to put earplugs in. I’m good at this. Don’t you know I’m gonna be a hearing doctor?
Steve and Rose were both waiting for me afterward—she had boxes of my favorite candy in her purse, and smelled like Camels. I know you’re chain-smoking outside while this is happening. Dammit, I want a cigarette, too.
“Don’t tell Mom about this,” I said, and she quickly agreed. We weren’t stupid. I was barely able to handle my own emotions, let alone hers.
Eight hours went by since I went through admission, “MS Query” at the top of all my paperwork. The ER was empty.
“What’s taking so long?” Steve asked.
I knew the answer. They found something. Betcha ten bucks I was right.
The kind young doctor came back to my room and sat on my right side. “Your urine is clean. Your blood tests show markers of inflammation. Your ultrasound looked good, there are no blood clots.” He searched my face, but I didn’t budge. “On your MRI, you have plaques, old and new, indicative of Relapsing-Remitting Multiple Sclerosis.”
Fuckin’ nailed it.
“Alright, where do we go from here?”
They gave me a spinal tap and pumped me full of steroids. Nobody told me it would taste like metal, along with all the other side effects. I followed each instruction while my sister and husband sat shell-shocked in the corner.
I had no tears. I wasn’t afraid, too numb to process what was happening to me. So I have MS. So what? I’ve known it for years. I know it can make me dizzy and wobbly sometimes. Maybe when I’m older, I’ll need a wheelchair. But that’s the worst of it—it’s not a death sentence. I can live a full life. I won’t miss a thing.
Before he left the room, the doctor said, “You can’t fly. Cancel any upcoming trips.”
“Whoa, whoa, I can’t do that. I’m about to go on interviews all over the country. The rest of my life’s on the line.”
“Well, don’t fly this week. How about that?”
“I guess so.”
On Monday, I told my first interview site, “I need to reschedule.”
“Oh, no! Can you tell us what’s going on?”
Why hide it?
“Sure. I was just diagnosed with MS, but I’m having a really active problem right now, so the doctor told me I shouldn’t fly this week. I’m flexible, and will be fine the week after next.”
An email followed: “We’re sorry to inform you that your interview’s been rescinded.”
Fucking great. Now I have to keep this shit secret. Assholes, this is illegal.
My next MRI a week later was longer than the first. I had contrast this time—Gadolinium dye, which made my brain light up in all active spots. I took the disk from the nice radiologist and searched for the right software when I got home. A brain with MS? That’s gotta be cool. I knew Multiple Sclerosis literally meant “lots of scarring,” so I expected to see little gray spots throughout.
Oh, my god.
A huge bright spot, smack-dab in the middle of my left temporal lobe, was impossible to miss. A small speck glimmered on my motor cortex. Some gray spots didn’t light up—those were the old ones. Yeah, I remember you.
The neurologist called four days later on my twenty-sixth birthday, the 8th of April. “So the lesions on your first MRI are growing. You had a big spot, .9 cm, and it tripled in size. It’s now 3.3.”
Tripled in size? That’s the monster, alright.
”You need another three rounds of Solu-Medrol, the infusion steroid, then you’ll take ten days of oral Prednisone.”
That’s a shit-ton of steroids. “Alright. I’ll be there.”
Infusion centers are where people go to get Chemo. They’re brightly lit and the nurses are friendly. The people sitting beside me were dying. A woman across from me cried while her central line was adjusted.
Holy hell. And I’m just here for steroids. I don’t even look sick.
I brought in some laughs, sang for the others, and took pictures with Steve. My needle-prick sites grew in number daily. I really hate needles, but it has to be done. Stocked my purse with hard candies to cope with the taste. On the third day, during my last infusion run, I leaned down to my shoes.
“Whoa! That’s fuckin’ weird!”
“What?” Steve said.
“I have Lhermitte’s sign,” I replied, familiar after Googling so much. “I just felt a shock from the top of my head to the pads of my feet. It’s happening when I lean over.” I did it again, just to feel the jolt. At the time, I was fascinated, not scared. “I guess this doesn’t bode well for my infusion if I just got a new symptom mid-treatment.”
My neurologist requested a third MRI. The woman placing the contrast material missed the vein, so my right arm turned black and blue.
Again, I took the disc home and uploaded the images. Okay, so the big-bad-monster calmed down. But is that a new one? I counted them all. Shit. It didn’t work. They’re not growing, they’re multiplying.
I wasn’t surprised when the neurologist called me. “It’s time for last resort. We’re ordering you Acthar. It will come in the mail.”
“Acthar?”
“The last drug to treat you. It will stop the progression for now.”
The last drug? For now? What the hell does that mean?
“You need to choose long-term treatment. We’ll give you brochures again.”
“But I did, I picked—”
“That one isn’t strong enough. Your condition’s too aggressive. Select another drug.”
My head spun. Steve came home from work as I stood over the bathroom sink of our teeny apartment.
He poked his head in the doorway and touched my shoulder. “Hey, you okay?”
“Yeah, I’m fine. I’m so glad I finished the interviews already. I look like a heroin addict. I even have tracks.” I held out my arms, palms up to him, the blue bruise in my elbow spreading down to the wrist. I laughed, but melted into straight-up sobs without warning.
“Shh,” he said, bringing me to his chest. “It’s alright.”
“No, it’s not. I did all this for nothing. They just called me and I failed the steroids again. They’re gonna order the little bottle the PA told us about. The one that’ll be billed to my insurance for fifty grand. Fifty grand. And the meds I picked aren’t strong enough.”
Steve said nothing, probably just as shocked as I was.
Two days later, a box arrived. It was filled with little ice packs and Styrofoam. I rifled through to find the teeny glass bottle, filled with what reminded me of clear, half-set Jell-O. “Acthar. It’s a trap!” I laughed, unable to separate the name from Star Wars, dependent on humor to circumvent the disaster of my medical life. I dumped out the box’s contents for what to do next.
Well, that’s unexpected. Fifty-thousand-dollar medication, a box full of needles, and no instructions.
***
All this led to my stupid volunteer effort, where I sat in a warehouse as students analyzed me.
It’s not funny anymore.
They asked me more about my MS fatigue, and if I had any bad days since my diagnosis.
“Yeah. Last week my fatigue was so bad, I almost wet the bed. I knew I had to get up, I wanted to get up, but I couldn’t. I just...couldn’t get out of bed.”
“Did you get enough sleep the night before?” they asked.
“It has nothing to do with sleep or no sleep. When you don't get enough sleep, you’re tired and cranky. This was something different. This was—weights on my limbs. A heaviness I couldn’t lift. Now I have the Lhermitte’s sign every time I look down. Do you have any idea how much you look down during the day? I’ll tell you. A helluva lot more than you think.”
They nodded at me and had me walk a straight line. I could still walk the line, but I felt defeated. I left day one of their study in shambles and went to my car, where I burst into tears.
“Fuck,” I screamed, and started the engine. I was tempted to get out and look in the back hatch. “I fucking know what that damn thing is called. Why can’t I just say it? Where did it all go?” I drove home in silence, harried and scared.
I pulled out my laptop the instant I got home, and went through the stories I worked so hard to write. I hadn’t re-read them, not since they were finished and I wrote the last words of the sixth installment, only completed a few weeks before. All day I buzzed through my creative efforts, feeling the emotion I’d put on the page, desperate to remember the uplift I felt when I decided to create something on my own.
Something changed. Part three of six shifted in tone. I don’t remember writing this. I looked at the timestamp on the file itself. I was drafting right after my diagnosis. Whole sections, many chapters, were created in a void I couldn’t remember.
My writing. It’s so different now.
The prose, once so floral and eloquent was—stilted. Jarring. Not comfortable at all. My narrator’s voice sounded tired and flat. Descriptions consistent through parts one and two transformed. My character’s clothing, always clad in thick leather, became something else.
Animal hide—why’d I say it like that?
The same sensation I had earlier of helplessness and dread struck like a hammer. Alone in the apartment, I screamed, “Holy shit, I forgot ‘leather’, too! What the hell else did I forget?”
I scoured my writing for more tell-tale signs of MS and found evidence everywhere. Errors I would’ve otherwise never made. Incorrect usage. The wrong “there, their, they’re.” Things I mastered in early days of advanced English classes and technical writing.
Now I am impotent. A speck in the air.
Sure, MS wouldn’t kill me, just my reason to live. Down the hole, page by page, my talents disappeared.
I closed my computer and tried to relax. Putting on Netflix, I drowned in my tears, until I was out of the energy to sob.
Steve got home and asked how the test went in Boulder. “Did it go as you—"
“Umbrella,” I said, still sitting in shock, a used needle of Acthar on the table before me. “It was an umbrella, and my brain is shot.”
He sat next to me, as he still does today, when I ask why I describe some things the wrong way.
“Why’d I say turbine instead of fan blade?”
“You have a degenerative brain disease.”
Right.
Morgan Sloan is a practicing doctor of Audiology as well as a hobby writer, painter, and musician. Morgan was diagnosed with Multiple Sclerosis in 2014, lost a mother to suicide in 2016, and has lived a lifetime of other medical struggles. Their growing family lives in Santa Rosa, California.