Tag Archives: Iowa City

About to Launch

I am about to complete the Phase One, the Usual Diet phase, of the MS Diet study, which compares the efficacy of the Swank Diet with the Wahls Protocol in improving fatigue for people with multiple sclerosis (MS).

My husband and I concluded the Usual Diet Phase by going somewhere unusual. We’d never been to Costa Rica before. We wanted to eat our way through a new country without making any gringo requests for “gluten-free” anything. As it turned out, we ate very healthily there, and could have followed either diet without causing a stir. At one of the bed and breakfasts where we stayed, breakfast consisted of a neighbor’s eggs, seasoned with herbs growing in the kitchen garden, accompanied by juice squeezed fresh from oranges I’d picked myself in the backyard. And the coffee was picked right there in town. Food can’t get more local than that.  Yum! Costa Rica is a much healthier nation than the USA. (More on that in a later post.)

Tomorrow morning, my husband and I will take the seven hour road trip to Iowa City, IA, the site of the Diet Study.  This town has some sentimental value to us; it was here that I went to grad school, here where our only child was born. The hospital hold memories, too. It was here where I worked for the Telemedicine Resource Center, here where I had my first MRI, first lumar puncture, first spinal headache (when the puncture went wrong.) Here was where I got the diagnosis, twenty two years ago, that made me think I’d have less than ten years left outside a wheelchair. I’m still walking. But more slowly than I’d like.

On Wednesday, after my fasting blood is drawn, my food records are handed over, and my motor assessments are taken, my husband and I will meet with the study nutritionist, who will announce which diet we will be expected to adhere to for the next twenty four months. My hope, of course, is that whichever diet we get will reverse my disease course, that this will not be a mere twenty four month change, but the beginning of a lifetime shift. Are my hopes too high? My husband thinks so. He thinks we eat pretty darn healthy already. But he’s open to giving either diet a chance. I am so grateful for that.

The Swank Diet is a low saturated fat diet that eliminates red meat and high fat foods and includes whole grains and fat free dairy products. The Wahls Elimination Diet eliminates all grains, dairy, legumes, eggs, and nightshade vegetables/spices. Both diets include fruits and vegetables and dietary supplements.

Wish us luck!

Decisions, Decisions

Last Friday, I had a simple decision before me: ziplining or kayaking?

My friend Elaine and I had agreed to go ziplining—oh, two Octobers ago, and somehow our plan kept getting put off. We were on the verge of letting yet another bright autumn slip away with no zip. Neither of us wanted to be the first to admit that we are no longer in the market for thrill seeking, that a sedate afternoon of kayaking is now more our style; thus the question of which activity to pursue was still dangling by a text message thread as I entered my optician’s office for my annual exam.

I wasn’t all that keen on keeping the appointment—I already had a lifetime supply of contact lenses. This is how old I am: I am so old, I remember when “soft” lenses were not yet a thing; when contact lenses were suffocating brittle little plates. A ripped contact lens meant penury, for in those days one contact lens cost far more than today’s one year supply of soft “disposables.”

As the oldest of three, then four, severely myopic children in a family with little or no disposable income, I would have been astonished to learn civilization would eventually produce disposable contact lenses. To this day, I find the concept offensive. Why throw out a perfectly viable technological miracle?

We children wore our contacts until the lenses cracked, or until our prescriptions worsened, whichever came first. As such events occurred with horrific regularity, our severely myopic family of five, then six, was a winning lottery ticket for our local optician. I couldn’t help but resent our optician’s relative wealth. And feel deep personal shame every time I let the family finances down…again…while contributing to that mustachioed man’s vacation fund.

I’ve never quite outgrown that shame, or my indignation when suddenly little slips of plastic went from being worth hundreds of dollars each to being sold in 365-packs for way cheaper. There has never been an intermediate stage of cheap single serve contact lenses…except in my medicine cabinet. I still wear my contacts until they rip or until my prescription becomes obsolete. I keep reaching what I think must be the outer limits of nearsightedness—a -10 on what I assumed had to be a scale of -1 to -10—only to learn in subsequent visits to subsequent opticians that there are further negative integers.

Last Friday, I hit a new low: -13. And that wasn’t the bad news.

The bad news was that the flashing lights I’d sensed as coming from behind my left eyeball weren’t some silly commonplace symptom of my multiple sclerosis, as I’d assumed. The optician referred to those flashing lights as an “event” that signaled my retina was maybe thirty days from detaching. She then recommended I get an appointment thirty days out, though I should see her earlier, if “a dark curtain falls across your vision. Or an array of floaters.”

I made the appointment to be polite; I was already thinking of consulting a specialist. There had to be a more proactive approach.

I refused to enter “detached retina” on Google. Instead, I texted my husband about the problem, figuring he’d Google for me, and spare me the worst. He texted, Don’t stand on your head. Stay away from roller coasters.

Excellent! The zip-line vs. kayak decision was made for me! No zip-line.

This retina crisis was wonderful. Clarifying. I would put my affairs in order. Pronto.

Another decision—vote early or vote on Election Day?—resolved. I would vote first thing the next morning.

The future is…more and more problematic.

For months now, I’ve been looking forward to driving up to Iowa City to participate in an exciting study funded by the MS Society which will compare two popular diets to treat MS-related fatigue. I’ve been fascinated by the possibility that MS can be treatable through diet, but I’ve always been hesitant to go all-out. Joining the study is going to force me to be one hundred percent compliant, while also being a force for the greater good.

And while participation in the study has been reason enough for visiting Iowa City, I’ve also been planning to stick around town the following day for a ceremony to honor James Alan McPherson, a brilliant writer and compassionate teacher of mine from the Iowa Writer’s Workshop. Other writers I love and esteem and/or have read will be traveling from around the country to gather in his honor. I’ve been reading his work all week, revisiting some of the very themes I remember him bringing up in workshop, to little avail. Most of us students weren’t yet well equipped to respond. I, for one, was too young at the time, too narrowly focused. Which is why I’ve appreciated his words being frozen in time in his essays, waiting patiently for decades for me to finally grow up.

While I’ve lost my chance to ever talk to Jim again about Spartans vs. Athenians, I’m happy to say that at least I did have a chance to reconnect with him five years ago, at an Iowa Writer’s Workshop Seventy Fifth Anniversary Reunion. He had been sitting alone in a crowded room; unrecognizable in that he was thoroughly unacknowledged. I sat and talked with him a long time, comparing notes on living with chronic pain and chronic illness. When I left him, I didn’t expect he’d make it another five years; I don’t think he was expecting that, either. The ceremony for him will be a vast and profound validation. It will be something to see. I’ve wanted one of us to get to see it.

So I went to a retina specialist. While I carry that old grudge against opticians, I have all the respect in the world for ophthalmologists. I’d expected an ophthalmologist would be proactive, would have some sort of plan to prevent a “dark curtain” or “an array of floaters” from falling across my vision. Surely, a retina specialist wouldn’t keep me in suspense for thirty days.

The retina specialist saw me promptly. He took a very fancy picture of my eye. That was service. He said I should make an appointment to see him in thirty days, or to call him immediately , if  “a dark curtain falls across your vision. Or an array of floaters.”

I had to admit it. The optician wasn’t so far off.

But this guy is better. He has to be. He told me he can fix the problem. He told me that if I get to him early enough in the trauma, he can fix the problem in his office. But if I get there later? He can fix it in the OR.

I already knew from my husband’s Google foray that those OR surgeries take weeks to recover from.

It seemed to me, then, that it was a good thing I lived a mere ten minute walk from his office.

“So,” I ventured, “I like to travel. Do you think it’s a good idea to travel right now?”

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The specialist answered soundly, “Travel.”

I went ahead and made an appointment with him for thirty days out.

Yesterday, I packed my bags for a three day trip to Iowa City. It was a gray day; perfect for my light sensitive eyes. I made it seventy miles before I started seeing floaters, squiggly little lines wafting across the gray sky. I wondered, how many floaters constitute “an array?”

I still had four hundred miles to go. There was so much waiting for me at the other of this trip. People I haven’t seen in five years, in twenty years. People I’ve been eager to meet. But the only person I was thinking of was my husband. How awful it would be for him to get a phone call asking for a rescue. Or worse, a phone call from a far-away hospital.

I had to make an uncomfortable decision.

I could keep driving, keep asking myself, every few miles or so, is this an array?

Or I could turn around.

It wasn’t a difficult decision, after all.

Still Standing

Sixteen years ago, I coerced my husband into doing something crazy. I had just come back from a doctor’s appointment that hadn’t gone at all well.
When I arrived at our shack, I was crying like a baby. I mean this quite literally. I was crying so hard, I could not form a word.
We both found my speechless sobs distressing. My sweet husband’s dark eyes were widening with horror.
Just a few months earlier, his mother had been diagnosed with terminal cancer. He’d already learned about the flipside of love.
My husband loved me. I now knew he was going to lose me, was losing me already, one little brain lesion, one little spinal cord lesion, at a time.
Until that day, I hadn’t heard of multiple sclerosis. I didn’t know for certain if an MS diagnosis was better than a terminal cancer diagnosis, or far, far worse.
I wanted it to be better. Far better. As much for my husband’s sake as for my own. I wanted to comfort the poor guy, who was standing there, unflinching, receptive, gathering his strength to endure the unendurable, in whatever form it would turn out to take. I wanted to tell him, the love of my life, “I’m not going to die.”
Which was, of course, both the immediate truth and a big fat lie. I wanted to say it anyway, but I was blubbering so hard, even I couldn’t get a word in edgewise.
I knew MS wasn’t terminal. The doctors had been very clear on that point. I was going to die with MS, but not necessarily of MS. When I eventually die, it will most likely be due to some other cause.
But to deliver even this cold comfort, I would have to quit bawling. I would have to pull myself together. I would have to form some words.
We had the same idea at the same time.
My husband handed me a pen. The man can be counted on to carry a pen. And that’s when it occurred to me that I didn’t have to do the explaining. As he rooted through our rotting shack for a blank piece of paper, I rooted through my cluttered pocketbook for the wrinkled MS Society brochure.
Then we made our exchange—a sheet of blank paper for a printed pamphlet.
I wrote on the sheet of blank paper, “I’m not going to die.” When I looked up, he was scanning the pamphlet.
The look we exchanged said it all. We were in deep trouble.
Oddly enough, I didn’t sob harder.
Already, I started to feel better. The good news was, I wasn’t in it alone. And yeah, that was also the bad news. But as bad news went, it was at least bearable bad news. For me. I couldn’t imagine how it could possibly be bearable bad news for my husband.
Lucky for me, my husband exceeds the boundaries of my imagination.
The man was capable of deciphering the pamphlet. More so than I was. I have a head for nuance. I have no head for statistics. The nuance of the pamphlet was ominous. It conveyed this the-glass-is-an eighth-full kind of optimism that I found highly suspect.
My husband has a head for nuance, but he also has a head for statistics. He could at least calculate the specific inverse of an eighth full. He isn’t bullied by statistics. Conjecture outright bores him. The guy has a constitutional aversion to freaking out about the future. This quality has served us very well. Which is not to say the diagnosis did not scare the hell of him, out of us.
My husband and I had always intended to have a kid “later.” “Later” meant after we’d both finished grad school. “Later” meant after we’d upgraded our living quarters from a $375/month shack.
The MS Society pamphlet blew apart our concept of “later.” We were just kids. To us, “later” had always meant, kind of like now, but slightly better. But even according to the optimistic pamphlet, “later” meant, kind of like now, but an indeterminate fraction worse. And then worse still. And then worse still.
As I saw it, this meant only one thing. We couldn’t count on “later.” If we wanted a kid, we had to have one immediately. Like, while I could still push a carriage. Like, while I could at least lift a baby to my breast.
Gentle reader, “later” turned out to be a whole lot rosier than my mildest conjectures.
Our son is fifteen now. The child has never spent so much as a night in a shack. (Wait ‘til grad school, kiddo.)
We recently took our healthy son with us to Iowa City for the 75th Anniversary of The Iowa Writer’s Workshop. We gave him a tour of all the places we’d lived while I’d studied there, from the crazy apartment on North Dodge in the back of Hilltop Tavern, to the farmhouse in Swisher, to the metal house on G Street, to that sorry, ramshackle shack.
My husband took a picture. He said, “I can’t believe that place is still standing. I underestimated so many things about the world.”
So did I, my love. So did I.