The Wisdom of Forrest Gimp

Every Day with Michael is like Tuesdays with Morrie, but instead of inspiring and uplifting, it bums you the fuck out.

Five and Ten

Fifteen years ago today, I met the man of my dreams. And though the expression is a cliché, the experience has been anything but.

I sensed right away that he was different, and by the time we were halfway through our first date, I was thoroughly hooked. Not only was he nice to look at, he was smart, funny, thoughtful, sensitive, engaging, and playful—practically a custom order from the Man Store. The appeal of those qualities is even stronger today. There’s no one I’d rather be with.

Let’s be honest: it takes a special person to put up with me day in and day out. Throw in a progressively debilitating disease—in the first year!—and the odds get even slimmer. I marvel regularly at the good fortune of having someone who’s a partner in every sense of the term, at my side on sunny days and dark ones, through epic highs and lows and the rolling terrain of ordinary life, making the bad moments bearable, the dull ones fun, and the great ones even sweeter. I can’t imagine the experience without him, and I’m grateful every day.

Happy anniversary, Dan. I love you.


Photo by Marty.

The Wisdom of Forrest Gimp

As the shell is to the snail or the turtle, as the RV is
to the retiree, so my wheelchair is to me.

The Wisdom of Forrest Gimp

The worst part is the inability
to reach down and pet my dogs.

The Wisdom of Forrest Gimp

I’m grateful to be alive so many years after diagnosis,
but also a little annoyed.

Roger That

"If I were in this condition at any point before a few cosmological instants ago, I would be as isolated as a hermit. I would be trapped inside my head. Because of the rush of human knowledge, because of the digital revolution, I have a voice and I do not need to scream."

From Julia.

Overheard in the Holler

Doing range-of-motion exercises the other day ...

Michael: That feels so good.

Dan: If I could think of a way to make it hurt, I would.

Overheard by: Le Marquis de Sad

Rosebud

My mom wiped my ass the other day for the first time in 40 years. It was a moment I'd been dreading for eons, yet it proved surprisingly nontraumatic ... at least for me.

Overheard in the Holler

This morning ...

Dan: Who would steal a 10-year-old van?

Michael: Who would steal a handicap van?

Later ...

Dan: They're sending an officer over to take a report.

Michael (wistfully): I hope they send someone hot.*

Still later ...

Dan, on phone to mother-not-in-law: The officer said [minivans] are often stolen and used to commit crimes.

Michael: Like Patty Hearst.

Overheard by: Grand Theft Otto

*They didn't.

All Dolled Up

"You don't have a history of addiction, do you?" the nurse asked offhandedly as she phoned in two more narcotic prescriptions. "Not that it really matters."

There's a long list of things I don't have to worry about anymore, and apparently it's still growing. ALS freed me years ago from any fear of cancer, which killed both of my father's parents, or heart disease, which claimed both of my mother's. Early on, when I was put on an anabolic steroid to counter the muscle wasting, my cholesterol shot up 100 points. This might have been a serious concern for someone else, but as my doctor cheerfully put it: "I don't think you're gonna be around long enough to develop congestive heart failure."

When I enrolled in hospice, my original nurse (who soon thereafter vanished mysteriously) pushed the idea of keeping a stash of morphine on hand "just in case." In case of what, I wondered. A dirty bomb? President Palin? For shortness of breath, she explained. "It'll calm you." I finally gave in just to shut her up, then forgot about it until last month's trial, which made a believer out of me.

I'd already been on an antidepressant* and a elephant tranquilizer muscle relaxant for eons, and now I have the morphine for brief episodes and Ativan for longer ones. My medicine cabinet is starting to look like Judy Garland's.

*A chirpy physician's assistant once said, "You've been on the SSRI for a while now. Have you thought of stopping?"

"Are you insane?" I snapped. "Have you looked at my file?"

Out in the Cold

When I was first diagnosed, I walked around thinking: Oh my god, I’m dying! How can that be? It seemed surreal, because I looked and felt in great health. Barely 30, I’d been a gym habitué for years. I ate well, got enough sleep, and spent most of my waking hours in some type of motion. Furthermore, the timing and setting were all wrong: I’d just moved to San Francisco to be with Dan. It was scenic, sunny, beautiful. We were always biking and hiking. He was teaching me racquetball. It only began to sink in when I picked up my tennis racket for the first time in ages and discovered that I could barely hit the ball across the court.

You can’t really function with your head on the executioner’s block – at least I couldn’t – and the sense of immediacy gradually grew duller. I don’t live in denial; it’s more a state of deliberate myopia. At any given point in my progression, I’ve been grudgingly okay with the status quo, but I’ve trained myself not to contemplate the future. It’s a dark and scary place for me; even brief glimpses spark anxiety and depression. Better to focus on the present and count my blessings, something I rarely did before ALS.

Myopia might not be an option if my progression weren’t so slow. As it is, I often have the sense that my deterioration has plateaued. But whenever I’m lulled into cozy complacency, ALS has a way of bitch-slapping me back to reality and reminding me who’s running this ride.

The week before last, I caught a cold. Normally I’m not too aware of the decline in my breathing and swallowing, but the moment I got a little phlegmy it became uncomfortably apparent how compromised both were. With an easily blocked airway, clearing my throat became an exercise in terror, and what would have been a moderate annoyance for a healthy person proved truly harrowing for me – and a humbling reminder of my ever-increasing frailty.

I’m all better now. Well, not all better, but over my cold.

Unbroken

I've always been grateful for my friends, and the more my world shrinks, the more I appreciate them. These are the people who entertain and enlighten me. They keep me engaged in the world despite my physical limitations. They make me want to go on.

One such person is Laura Hillenbrand, who serves me regular helpings of food for thought and makes me laugh at least once a day. She is such a presence in my life, it's surreal to think that we haven't been in the same room since our high school graduation, more than 25 years ago.

Like me, Laura is largely homebound due to ill health. Unlike me, she spends her time and talents productively, finding history's forgotten stories and telling them as only she can. Her first book, Seabiscuit, spent months atop the New York Times bestseller list (and gave me one of my favorite phrases ever: mighty shit Godzilla). It was such a good read that I worried whether she could match it when she started working on her next book. I should have known better.

Unbroken, which hit bookstores today, is the wildly improbable story of Louis Zamperini, an Olympic runner turned bombardier who survived a plane crash and 47 days at sea only to become a Japanese POW. Knowing that books are hard for me to handle, Laura kindly sent a digital copy, and I was delighted to find that her storytelling skills are sharper than ever. Unbroken is truly riveting -- and God knows I'm not given to idle praise. I've been hooked since the preface and had to tear myself away to write this. Now go buy a copy so we can talk about it.

Today's Top Story

A fellow Guilford grad with ALS:

Often Awesome

 

Overheard at the Polling Place

Dan, nodding at albiness: There's that woman who's always so friendly to you and basically ignores me.

Michael: We're both despised by society. It's an unspoken bond.

Overheard by: Pariah Carey

The Wisdom of Forrest Gimp

Now I understand why old people are so obsessed
with their bowel movements. It’s like money or sex:
the less you have, the more important it seems.

Jackals on the Prowl

The Wisdom of Forrest Gimp

It’s exhausting to be completely dependent on others.
Almost as exhausting as having someone
be completely dependent on you.

Bedbound

I woke up sweating in a straitjacket the other night.

That’s what it felt like, anyway. I was lying on my back, arms at my sides, the covers up to my chinny chin chin. When I tried to pull them down, my left arm stirred minimally, the right one not at all. Upright, I can usually use the left hand to help the right, like a child with a retarded sibling, but that night I got nowhere. In fact, the more I squirmed, the tighter the bind. It was like a full-body Chinese finger trap. Then I tried my legs, but they proved equally useless.

I sleep with a button on each side to summon Dan, but with my hands glued to my hips, they were hopelessly out of reach. Fortunately, he awoke on his own and set me free.

Walk 'n' Roll

These days, I type about as well as I play the piano – which is to say, with the skill and finesse of a drunken manatee. So I’ll keep this brief.

On October 17th, I’ll be celebrating a favorite annual tradition: the Walk to Defeat ALS. This is the 11th year for the event and for my team, the Jackals. For me, the walk is an early Thanksgiving, with many of my favorite people gathered in support of a great cause.

That cause, as most of you know, is the ALS Association’s DC/MD/VA Chapter, which has done so much for me over the years. The superlative staff – many of whom have become my personal friends – help people in my situation keep our heads afloat in these choppy waters by offering assistive technology, medical equipment, and monthly resource groups, to name just a few of many services. These indispensable programs are made possible only by the generosity of people like you.

I hope you’ll consider sponsoring me for the walk. Support in any amount is greatly appreciated, and contributions are fully tax deductible. Just click here.

If you’re free on the 17th, consider joining the Jackals on the Mall. We have a terrific time, and there’s always room in the pack.

Overheard in the Holler

Me, wistfully, to Dan: I would've made a good old person. I've been practicing my whole life.