I’m thinking of having my nose removed. It’s nothing but trouble anyway. Always itching or tickling or runny, and of course there’s nothing I can do about it in my condition. I could do it for free, too. I meet my deductible in like January, thanks to this medication I’m on that’s like ten thousand a month. That’s how I got my free vasectomy. Pretty sweet deal, since those usually go for a thousand if you want a decent one. (Eight bucks on Amazon, if you’re shopping around.)

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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.

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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 »

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 »

How are you doing? is a question I dislike, especially if it comes with sincere eye contact and emphasis on the word “doing”. It forces me to assess how I’m doing, and the conclusion is always (surprise), Still shitty. Sometimes people ask me directly, How is your condition? and then I can say that out loud. Otherwise I don’t reflect on how I’m doing. I keep my head in the present for the most part, attending to whatever needs to be done right now. This is better for my mental state, but I can understand that people would like to know. They are concerned, and probably curious about what ALS is like beyond “shitty”. So here goes.Read More »

I love my CNA. Her name is Yasmin Torres-Flores. She’s 28, came here from Acapulco when she was 18 and started CNAing. She’s great. She gets to my place every morning before I get out of bed and gives me a massage, starting with my feet. It’s a terrific way to start the day, especially since I usually wake up with intense cramps in my feet and calves.Read More »

Find out what it’s like to be going down the tubes. Strict reportage here with minimal philosophizing. (See Ruminations for that.)

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