Unnerved: My journey with MS

Tuesday April 25th, 2006. 2 AM — Home, Plainfield IL.

I’m a newly minted 29-year-old dad, rocking my one-month-old son Brady back to sleep after feeding him a bottle.

It’s dim. Pitch black defeated only by the classic Winnie the Pooh nightlight stuck into an outlet on my right. Matching Pooh Bear table lamp dimmed to that barely-there dreamsicle orange that today’s LED’s still can’t quite nail. Brady has slipped into a food coma and all is right in the world.

Until it isn’t.

I catch a glimpse, to the left, of what looks to be an electrical spark under the window. Competing parental instincts find me torn between jumping abruptly out of the glider and keeping absolutely still so as not to wake the baby. I compromise, simply staring at the suspicious outlet for a few seconds. Nothing to see h… Wait: Now there’s a purple spark further left in the crib. That doesn’t make any sense. I’m just tired; Seeing things. I decide to catch a few winks in the chair.

As I close my eyes, I’m startled to see that things get brighter. A purple, pink, and aqua spectacle parades across my field of view. The sparks from moments ago now full-on fireworks. Whatever it is, it’s not in the room. It’s in me.

I’m unnerved, but too tired to be properly spooked. I lay Brady back into his crib, amble back to bed, and drift off.

The next morning, I’m lying in bed staring at the ceiling. “What are you doing?” Barb asks, coming out of the shower to find me doing an impression of railroad crossing lights with my eyelids.

Right eye. Left eye. Right eye.

“I started seeing… stars… last night. They’re still there. I’ve narrowed it down to my left eye.”

“You should see a doctor.”

“I’ll be ok hon.”

A day later, I’m still seeing stars. And now feeling them. A dull ache in my left eye. It’s getting hard to read.

“I think I should see a doctor.”

Barb rolls her two working eyes.

Thursday April 27, 2006. 3 PM — Dreyer Medical Clinic, Aurora IL.

The ophthalmologist, Dr. Chu, looks me over and tells me I have a corneal abrasion. i.e., A scratch. He hooks me up with a dapper eye patch, and prints up the following notes.

ASSESSMENT: Superficial punctate keratitis. PLAN: Reassurance & Empathy given. Eye patch given. Artificial tears four times a day. Call back if symptoms don’t improve.

A weekend of pirate jokes ensue. Alas, symptoms too. I call back.

Tuesday May 2, 2006. 11 AM — Dreyer Medical Clinic, Aurora IL.

“Not getting better eh?”

“My left eye hurts worse.”

“How’s its vision?”

“I can see at distance, but I can’t read out of it.”

Dr. Chu proceeds to test the rogue eye with various contraptions. Some futuristic, some medieval. At one point he hands me a monocle attached to a cable and I feel like Mr. Peanut.

“Well, it’s not your cornea after all. In fact… I don’t even think it’s your eye.”

<Dude… It’s my eye.>

“I’ve reason to believe it’s your optic nerve. Behind your eye. I’d like you to see a neurologist.”

Thursday May 4, 2006. 4 PM — Edward Cancer Center, Naperville IL

Well. This escalated quickly.

I’m sitting in a comfortable leather recliner in Edward Hospital in Naperville. It’s a beautiful room. High ceilings, huge windows, and a literal violinist strolling around as if we’re all at a restaurant in a Billy Joel song as opposed to a chemotherapy infusion ward. I feel a torrent of “all the feelings”. Gratitude and guilt that I’m “only” receiving a steroid infusion for a cranky optic nerve, as opposed to treatment for an aggressive cancer. Resentment that I’m 29 and “have shit to do” for work and don’t have time for this noise on a Thursday. And fear. Fear that even if this “Optic Neuritis” ends up being no big deal, it’s a weirdly timed reminder of my own mortality in the wake of my bringing a child into the world.

Dr. Summers, the neuro who ordered the roids tells me that I probably have a virus that settled in my optic nerve instead of my lungs. Who am I to argue? The brain MRI came back clean, as did the squirrely test that involved electrodes and an erector-set head contraption straight out of Louis Tully’s “Yes, have some!” scene from Ghostbusters.

“The steroids may play with your appetite and energy levels, but you should recover fully after two infusions.”

The man spoke truth. Over that two-day course of treatment, I only slept 2 hours and ate an entire Costco All-American Chocolate Cake. For those of you who know this particular cake, no explanation is necessary. For those who don’t, none will suffice.

More importantly, he was also spot on with the recovery prognosis. Pain was gone by end of day 1. Vision was back by end of day 2. Immortality restored.

Friday May 5, 2006 — Monday Feb 13, 2017. — Various locales.

For the purposes of this particular story, cue the musical montage featuring a fortunate family growing from 3, to 4, to 5. Birthdays, baptisms, & BBQ’s abound. New jobs, new home, and new adventures.

The days so long. The years so, so short.

Tuesday Feb 14, 2017. 3 PM — Charlotte Douglas International, NC

It’s Valentine’s Day, and my date is a senior executive at a large insurance company. I’m trying to convince him to invest in our new fund. The meeting goes well: Lunch, laughter, and a tour of his favorite hot spots. I’m pretty sure he’s in, but only time will tell if he pulls the trigger (Morgan Freeman narrator-voice: “He would not pull the trigger.”).

Regardless, I’m headed home to my real date with a smile on my face and a spring in my step, scanning for my flight status on the CLT departures screen. It’s glitchy. I see another bank of screens about 6 gates down. As I walk up, I see that this screen is glitched too. Worse than the last one. Purple and pink static everywhere…

Or what if?

I close my old “bad” left eye. Nope. Screen still fuzzy.

For grins and giggles, I switch to my left eye, surprised to see that the screen is perfectly clear.

And that’s when the 11-year-old ghost of Dr. Chu whispers:

“I’ve reason to believe it’s your (other) optic nerve. I’d like you to see a neurologist.”

Enter a two week flurry of doctors’ visits, blood tests, and radiology.

Thursday Mar 9, 2017. 10 AM — DuPage Medical Group, Naperville IL

Dr. Cheng, my neurologist, rocks a distinctly Yoda mojo. She’s old(er than me), short(er than me), speaks in a distinctive accented cadence, and carries an inarguable air of wisdom. We’re gathered today to discuss my test results. Barb has joined me.

“Do you see this white formation here?” she asks, pointing to a picture of my brain.

Neither a radiologist nor any good at “Where’s Waldo?”, I politely lie: “Yes.”

“What about this one on the other side here?”

<Erm, uh…> “Sure.”

“You seem like a smart fellow. Do you know the Greek word for hard?”

Now I’m failing two subjects in a row.

She smiles. “Skliró. This white area shows scars, or “hardening”. As does this other one. Which means…”

I’ve never listened so intently to anything in my entire life.

“… you have several hardenings. Multiple sklirós.”

“I have Multiple Sclerosis?”

A quiet nod. Vertical.

“I have Multiple Sclerosis.”

Hearing myself say it out loud. That was crazy. The weight of the ambiguity being immediately swapped for the weight of a disability. I felt all of the feelings from my old visit to the cancer ward: Gratitude & Guilt (At least it’s not “that other worse thing.”), Annoyance (Ain’t nobody got time for that.), and of course, fear. “What’s gonna happen to me? Will it hurt? Can I work? What about my family? Will I die? Unknowns upon unknowns, flashing fractals before my eyes, in seconds, that felt like hours. Barb squeezed my hand, and we both started to tear up.

I searched for something to say. Me, the motormouth whose kindergarten music teacher once drew on the chalkboard as a giant mouth with arms and legs. Me, the public speaker & published writer. Me, the guy who suddenly had no words.

Dr. Cheng mercifully, beautifully, filled the silence.

“Michael. You did not ‘catch’ MS today. This has long been a part of you. For at least these last 11 years, but for, perhaps, your entire adult life. The only thing that has changed today is that you now have a name for a part of who you’ve always been.”

May 1, 2020. 1 AM — Home, Naperville IL

It’s been a little over three years since my diagnosis. Three years to tell close family, and close friends. Three years to reflect.

I’ve since learned a great deal about my… deal.

For starters, Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. The cause of MS is still unknown. Scientists believe that a combination of environmental and genetic factors contribute to the risk of developing MS. It tends to hit people with northern European genetics, or people living in less sunny climates. Check and Check. Something something Vitamin D. Maybe I should have stayed in New Mexico that summer back in college.

The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50 (I was 41, Check.), with at least two to three times more women than men being diagnosed with the disease.

For the geeks among you, you can find plenty of explainer articles and videos online which detail the mechanics of the disease, but the short version is this: Your “good guy” white blood cell soldiers get confused and start to go rogue, attacking the myelin sheaths around your neurons. (Think of the sheath as the rubber tube around the copper electrical wires in your house.) As the body tries to rebuild the insulation, scar tissue forms, hardens, and blocks the pathways, stopping your electrical signals from getting through.

Antics ensue.

What kind? Well… here’s the full monty. Let’s just say that if you’re keen to have me make an impact on your flag football team, you’d be wise to draft me sooner than later. Bottom line is that I’m unlikely to die, or even have a shortened life, because of MS. Rather, I’m at risk of my mind gradually losing connection to, and control of, my body. Which is a drag. Yeah.

Rainy weather forecasts notwithstanding, I always return to Dr. Cheng’s Jedi wisdom: That my “MS is part of who I’ve always been.”

For starters, as far back as college, I’ve been one to “burn brightly, but briefly”. A high-energy dynamo when I’m “on”, only to seek out an early bedtime whenever possible. My best friend Kevin used to say that if I were a Transformer, my “Tech Specs” would read 10 on intelligence, and 2 on endurance. (I consider both figures optimistic.)

Turns out that MS Fatigue is a particularly common symptom. Theories vary, but early consensus is that the MS brain, given the, well, “multiple hardenings”, has to crank it up to “11” in order to push nerve signals from stem-to-stern. As such, the battery gets drained much faster than normal, and needs more frequent charges. So, if I’ve ever left your party early, or noped out of your late invite altogether, this has been the reason, and I’ll be very happy to buy you breakfast sometime as an overdue apology.

More interestingly, MS can (sort of?) bear gifts. One of my clinicians, Eileen, asked me if I’d ever been accused of being a non-linear thinker. I yell-laughed, replying “I’ve literally built my entire career around it!” Some suspect that in an effort to get signals from Point A to Point B, MS folks’ brains send signals on “detours” around the hardened plaques. In turn, they make non-obvious connections and see things others might not. Am I an inventor, writer, analogy-slinger, and professor of innovation in spite of my MS, or in part, because of it?

I have a version of MS called RRMS, or “Relapsing Remitting MS”. In plain English, this means I’m likely to have an “episode”, get (mostly) better, and go for a while before I have another.

Honestly, I’ve been very fortunate so far. While the array of symptoms that may lie ahead of me one day is vast ‘n crappy, the actual problems I’ve endured to date have been few, modest in severity, and typically (like the eye excitement) intermittent. Stiff legs here, tingling arms there. I trip and wobble on rare occasion, but play it off like Chevy Chase’s old Gerald Ford Impressions. No biggie.

My long term trend-line is down, but that’s all of us right? It’s my belief that diet, exercise, cognitive stimulation, optimism, friends and faith can keep the slope of that downward line as close to level as possible. There is also a torrent of research that churns out new understanding, therapies, and medications with every passing year. I’m grateful to be facing this in 2020 as opposed to 2000 or 1980.

To that point, I have every intention of raising a glass with y’all when we cure this sucker in, say, 2040.

Though I just might ask that it be a day drink. Maybe a bloody mary. Or a mimosa? My treat.

Onward, ~!mb