Eve, part 3

Fall, 1990. Eve left Fairbanks for Seattle and I left Kenai for Portland. Both of us were excited about going to art school in the big city, and looking forward to getting together as often as we could to compare notes.

It was exciting, but also there was culture shock. For starters, we couldn’t believe that it was dark by 9 PM – in August. A few months later we would agree that it was just wrong to have so much green in the winter, and what with rain instead of snow, it seemed even darker and more depressing than our homes in Alaska. Very unnatural.

And when it did snow – like twice – it didn’t stick around to make everything look pretty. It turned to freezing rain and covered everything like a glazed doughnut. It paralyzed the whole city. Nobody knew what to do, or especially how to drive. A couple of snowflakes and everyone turned into quivering ninnies. What kind of place was this?Read More »

North Kenai

North Kenai wasn’t an official place, it was just the area north of Kenai. To get there you took the road north out of Kenai, the North Road to we locals, but officially named the Spur Highway. Only cops and paramedics and the like called it that, though (as in:  Spur Highway mile 18, behind Dick’s Arctic Welding, teen gas huffing in progress, over!).

The real name for North Kenai was Nikiski, and if you lived further north than us, past the refineries and the elementary school and closer to where there was a grocery store and a fire station you called it Nikiski. But the elementary school was called North Kenai Elementary, and that was good enough for me. Plus, that is where I learned that Nikiski means moose turd in the local native language, so of course as a kid I wasn’t going to go around saying I was from Moose Turd. Duh.Read More »

An ALS Christmas Carol

I wonder if a stranger and I exchanged life lessons recently, or if I just learned something after hurting her feelings. I may never know.

A cold, drizzly, early-December Saturday morning, the fam and I are going to pick up a Christmas tree. I am in a shitty mood. In addition to my usual stack of discomforts there are a few extra piled on: no parking near the tree lot; broken, bumpy sidewalks make my hand keep slipping off the wheelchair’s joystick so I’m driving all hurky-jerky; I’m overdressed and overheated, except for my hands and feet, which are freezing; my hood keeps falling over my eyes and I have to keep gyrating my head around so I can see.Read More »

Hiatus

Forgive me, loyal readers, for the long hiatus. I blame an insidious concatenation of bothersome tasks, writer’s block, and nice weather.

More than that though, I’m transitioning to full on handicapped-ness. My speech recognition software sits here scratching its virtual head while I eke out verbal goo, two words at a time. This is both frustrating and exhausting. I’m in the process of switching to an eye tracking computer system that will undoubtedly be super cool, but also really slow until I get the hang of it.

But that’s how it will be going forward, and like every other paradigm change ALS throws at me, I will adjust to it. Thanks for hanging in there with me and I will get back to you as soon as I can.

Next in Disease >

Caregivers

Fellow American, do you find yourself recently quadriplegic, demented, or just old and alone? Do you find yourself wondering, Whatever shall I do?

What you need, my friend, is a caregiver! And I will tell you how to get one. First, here are some things you will need: 1) Piles and piles of money; 2) Even more money; 3) Just absurd amounts of money.Read More »

Eve, part 2

The awkward and anticlimactic meet-up with Eve, the love of my life, just as I was leaving Fairbanks, possibly never to see her again, but after we had already spent a tearful night clutching one another, devastated to suddenly realize our beautiful relationship was over, professing our love for each other even as we were painfully closing the book, and then to bump into each other by chance the very next morning – that was foreshadowing. She ended up coming down to Kenai a couple of weeks later after Corey talked his parents into offering her a job on their commercial fishing site. She and I could be together for the summer.Read More »

Kenai

When I was five we moved from Seward to Kenai, near the mouth of the Kenai River. The Kenai River begins at pristine Kenai Lake, in the Kenai mountains, on the Kenai Peninsula, and flows west. It’s a beautiful glacial blue green until it gets close to the mouth, then it meanders through a marshy river flats and the banks become silt clay, which turns the river a corresponding ashy gray color. It oozes out into the Cook Inlet near the town of Kenai.Read More »

Why I won’t kill myself (probably)

ALS has been described as a “glass coffin” illness. It deteriorates nearly all your muscles, but leaves your eyes, sensory nerves and brain alone. You can look around and see all the things you are missing out on, feel how uncomfortable you are lying there, and think about how much it sucks. If I survive it, I intend to start an unsuccessful progressive metal band called Glass Coffin that will only play Monday night gigs at out of the way clubs. That’s highly unlikely, however, which often leaves me thinking of the inevitable, and how that may go down.Read More »