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  • Writer's pictureJoia

Today's rhaps is on ... MS-understandings

Updated: May 5

Neurons and myelin, on and off

I always hated the fact that Saint Paul College scheduled inservice days just before the beginning of the semester, leaving a hurried weekend to finish printing and posting, scheduling midterms and finals, ordering books and films. A morning in late August 2013 found me dragging myself to a mandatory keynote speech in the college auditorium, the breakfast buffet in no way making up for the early hour. Then Pete Feigal got up to speak, started telling us about his lifelong battles with bipolar disorder and MS.

The MS was obvious, the awkward stumbling across the stage, cane in hand, grabbing the podium for balance. He couldn't be drunk already, right? The racing thoughts, intrusive images, suicidal panics? Not so much.

I understood the discrepancy. Since my teens Christian shrinks and then college and HMO shrinks had diagnosed me with most of the DSM-disorders this side of schizophrenia. They finally settled on psychotic depression, dissociative and anxiety disorders, and PTSD. I had long settled on just one: stress. Well, stress combined with continued living.

My foot started refusing to lift off the ground in 2007. That spring my daughter announced that her college plans would unfold either in Seattle, LA, or Chicago. She fell in love with the Windy City on a weekend visit, so I asked to transfer to my company's branch office in Apple Valley, Minnesota, where I'd be six hours from Chicago and near my elderly mother. Six hours driving pretty fast and ready for the toll roads, anyway. I sold off most of our Berkeley townhouse possessions, stuck Leo and Junior and their kitty paraphernalia in a 40-lb dog kennel in the back seat of my Saturn Ion, and drove out to Point Reyes Lighthouse to start my journey east from the western-most point of California. In the pet-friendly motels at night I read John McPhee's Annals of a Former World on the geology of the day's terrain, bringing to life the eons of multicolor sediment in the rock formations outlining I-80 on its way east. In Des Moines we took a sharp turn north to the Twin Cities. I almost put money down on a gorgeous apartment overlooking the Mississippi, midway between the office and my mother's retirement home, when the software VP called me to say they'd shut down the Minnesota office and laid off all of us. With State Street dorm fees due and a parental FAFSA now irrelevant, I retreated to bureaucratic hustling, fashioning versions of my CV for every imaginable contingency, with and without a PhD.

Most days I'd go out walking around Silverthorn Estates, sometimes venturing through the Rice Creek reserve up to the corner Quik Stop where Mom got her milk and bread. I noticed my left foot would have trouble taking normal steps after about 25 minutes, then after 20, snowfall I could feel the foot drop as soon as I got out of bed. Over the next three years I went to orthopedists, sports medicine experts, physical therapists, later adding digestion clinics and urologists to my search, subjecting my bones and organs to filmy and virtual imaging all over the Cities. It was like communing with the blind men, each swearing loudly that the tusks, the trunk, the sinewy skin, was the main thing. When my primary care physician went on maternity leave, I took my 85-year old mother and a legal pad of notes delineating my medical odyssey to her substitute. You need to see an MS specialist. Finally someone saw the elephant!

I was 54, though, too old for MS. I'd never heard of a rare type, primary progressive, that hits us older folks. My cousin had been battling relapsing-remitting MS since her 30s. You mean this thing can appear without remission-relief when you're just starting to envision retirement? My medical journey was not yet over, though. I spent another three years hearing that I did or did not have this form of the disease, that my MRI lesions were and were not located in the correct areas, that my spinal fluid did and did not contain the correct biological markers. In 2012 I decided to use my state health insurance to go south to Mayo Clinic. A team of specialists went to work on me—neurologist, neuro-ophthalmologist, urologist, psychiatrist, neuro-psychologist, radiologist, auto-immune education nurse. Six months later they confirmed the bittersweet news that it was, indeed, PPMS. For the last optic nerve appointment I couldn't face driving the hour with a friend and got a Day's Inn room for the night while my eyeballs reverted to sight. That evening I went out to the Rochester Barnes & Noble and bought a package of Walker short bread cookies at the Starbucks counter, joked around with some strangers, tried to remember what we were all doing here on the planet. I think Jabba the Hutt was there. It felt like my life was ending (again). Walking to the hotel I thought of my Grandpa Drake, the one I never met, who had died at this Mayo Clinic, only fifty years old. Grandma always said he'd been a health nut, ate kelp tablets. He gave the South Dakota Presbyterian sermon in German each Sunday night. Well, I guess I'd already outlived him.

Back in St. Paul I invited the program director of the MS Society Minneapolis office to my corner coffee shop to find out about support groups for this form of the disease. Weren't any, not in their five-state area. So I started one at Fern's, the local comfort food and dart-throwers bar. Twelve people showed up, some in tears, I thought I was the only one with this thing. Over the next five years we laughed a lot, traded personal coping techniques, walking apparatus advice, and the names of the good neurologists. And the bad ones to avoid. The lengthy new-diagnosis phone calls were the hardest, until the funeral for our friend who selected suicide as the way out. I gave the group to my co-facilitator.

Also difficult was continuing to juggle the doctors versed in visible vs. invisible symptoms. My molecules didn't know if they were psychological, neurological, orthopedic, psychiatric! My elephant was limping and fighting demons, blueprinting available toilets and averting unwelcome impulses, working on my laptop lying down and slaying angst-breathing dragons. And they got louder, those dragons, snorting and hissing at me to give up, let it go, this is untenable. California shrinks had already declared me a basket-case just on the basis of the dragons, so the neuro-degenerative diagnosis on top of this seemed...a little excessive. And how did I even fit the MS profile of the northern female after a couple more decades in Portugal-climate California?

One thing soon became clear, however: MS took away the capacity to overdo it. This is a concept not easily grasped by Anglo-Saxons, and I was constantly warned not to push myself...uh, beyond what I am able to do? Sounds silly just to write! With MS there isn't any note-to-self or staying up late to grade exams before the next unit or adding another weight to the leg press or even finishing all the dishes in the sink. My myelin-challenged neural pathways no longer follow signs mandating Protestant overexertion or A-type behavior. Oddly this turns out to be a Good News / Bad News scenario, since it's both the most difficult thing to explain about MS as well as its best protective device. A nurse friend who had known me for a decade decided I spent inordinate amounts of energy disguising the fact that I had MS, as if there's energy left for this on top of what actually got done! When you hit the wall, that’s it, time to lie down and shut out voices, words, devices…pretty much everything external, until the body regenerates new energy. I give up. I guess if it were easier to see another's reality as your own projections, philosophers wouldn't have had to write about it all these years.

There was also the Buddhist joke of Self attacking Non-Self, which is Self in auto-immune logic. What's a suicidal girl to do? I'd made it past nineteen, when butchered reproductive organs pushed me beyond the high school cutting habit. I'd made it past a number of plausible ideations involving forest fire towers and vodka/pill cocktails. My body's trying to off itself now? And I'm supposed to stop this with non-gluten crackers and dairy-free yogurt? Uh, sure.

So ... these days when I awake with a foot that forgot how to bear weight and a will that forgot how to face the day, when I slice my machete through the thicket of bad overnight programming, when I pour that first cup of coffee on the panic that follows me out to the varanda, I begin to remember where I am, a stone's throw away from a perfect blue sea, a click away from a friendly post, a dream away from all that life promised in a pink bedroom two hours north by a Moorish castle on a hill.

That morning in the college auditorium of Saint Paul College Pete Feigal had said, "the MS is nothing next to my psychiatric symptoms." I started to cry. Never heard anyone say that.

It's not true anymore, of course—the MS and PTSD symptoms are pretty even now. But Continente online delivers Walker short bread cookies right to my door these days. That helps.

6 JULY 2019

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