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From ALS Bites

Jun 6, 2022

I'm Still Here

In an effort to keep this post at a manageable size, I haven’t included the true story that I had intended to… haven’t posted it here in this post. It is light, humorous (I hope), and explains a part of my reluctance to go out as often as I should. It’s found here: An Evening in St Paul.

Spooking my friends?

It was one month ago that I sent a mass email—if 25 bcc’d recipients qualifies as a “mass” of anything. I’ve had replies from over half of my addressees, which is more than I expected. Several told me they would read the novel I urged them to do. At least two have started it; another bought it, and another told me she put a hold on it at her library. I knew the book wouldn’t appeal to everyone, so the response was encouraging.[1]

One reply stood out. A friend who hasn’t heard from me in awhile wrote (in part):

I am not sure exactly how I am communicating with you. I suspect this email will be translated into something aural or perhaps into something I cannot understand, perhaps a kind of scented effervescence, or a wormhole leading to your brain in a jar.

He is an interesting guy![2]

Not one of the moose in dangerEarlier this week, I dipped my toe in the waters of Facebook for the first time in a couple of months. I did so to share an fascinating article and video about the plight of moose in Minnesota.

I found more. A chance to say hello to an old friend I hadn’t “seen” in a very long time, a message from a grand niece who is growing up fast, and a friend who admitted (not exactly in these words) that he thought I’d “probably croaked.” He’s wrong, I believe, but I understand why he (and others) might think so.

My bad!

My re-emergence?

Six of eight of us on Duluth’s boardwalk; Tam and Nick were in a swanky restaurant somewhere nearby.It’s 2022. In fact, it’s nearly half gone. Now I am finally ready to move on from 2021—with apologies to Queen Elizabeth II—my own annus horribilis. Much of it was of my own making. Not all of it, but too much of it.

As some of my most faithful friends know, I’ve been an evasive, agoraphobic friend these past couple of years. It probably started with the pandemic stay-in orders. I found them common-sense and a civic duty. But I may have used them as a convenient excuse to constrict my social circle to, mostly, my family—whom I am so fortunate to see often.[3]

A bigger part of my withdrawal has been my increasing difficulties with communication and mobility. I am effective writing and speaking in my “mancave” using a Tobii/Dynavox eye-gaze system on my desktop computer. In my cave—more of a nook, really—guests have to stand behind me as I type and speak. It is no bueno.

My mobile Tobii tablet has never really worked well enough for satisfying verbal communication, and it is beyond hopeless outdoors. Being reduced to merely sittin’ and grinnin’ is tough for me, and I know it is awkward at best for my guests.

Then there are my mobility issues. The wheelchair I am sitting in right now is seven years old; I got it new 2015. It has served me well, but it’s not fitting me well now, and its limited adjustability has affected my driving. I’m refinishing parts of my home’s interior with a more rustic look. I struggle to turn to my right and to push my joystick to drive the chair forward at the breakneck speeds I used to enjoy.

The VA is replacing both my portable Tobii and my wheelchair. With any luck at all, I’ll have both by the end of this month![4]

My best excuses to play the hermit will be gone. Or so I hope. We have a three-day, two-night family trip planned for my birthday at the end of July, will take at least one play at Winona’s GRSF the same month, and Joann and I hope to bring some good luck to my old softball team soon. We have at least one out-of-towner visiting us, and are hoping for more.

We hope to host friends on our deck again, and I intend to check into Facebook (weekly?) to assure those who may care that I haven’t checked out just yet.

I really want to be a better friend and to get out more. Hold me to it!

Wisdom from Haaken-the-Great

My grandson recently celebrated his fourth birthday, but he’s a wise old owl. His mom posted the bon mot below on Facebook.

Haaken speaks the truth.

Haaken the young naturalist: long may he blaze his own trail!

—

Notes

  1. See Manuscripts Don’t Burn. The offer of a free, shiny new copy of your own is still open. Please do write to claim it! [^]
  2. I’ll be up for a music afternoon here soon, John, if you guys don’t mind me trotting out old-school tunes again. [^]
  3. I’ve been vaxxed, vaxxed, boosted, infected with the ’vid, and boosted again. It really doesn’t scare me—ALS will get me soon enough—but I’d rather not get it again. I felt pretty rough for more than three weeks in January, and I don’t want to infect anyone: most especially my two grandchildren. [^]
  4. The VA wheelchair support specialist took one look at the document I had written up—complete with helpful photographs—and said, “Seven years? He’s getting a new one.” I needn’t have bothered. [^]
  5. A bonus footnote: One should always read footnotes. For example, the book I’m currently reading, Sam Kean’s Caesar’s Last Breath buries this tidbit in a footnote:

     

    Because I know you’re curious, Einstein ate fried or scrambled eggs most mornings for breakfast, along with toast or rolls. As for his other culinary habits, he reportedly ate so much honey that his domestic staff purchased it by the bucket. Other favorites at the Einstein table included egg drop soup, salmon, mayonnaise, cold cuts, asparagus, pork with sweet chestnuts, and strawberry meringue. He liked his meat quite well done. “I am not a tiger,” he once told his cook.
 

Jun 6, 2022

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From ALS Bites