How does it feel?

Yesterday a song was stuck in my bean. It was Dylan’s Like a Rolling Stone.

How does it feel?
How does it feel
To be without a home
With no direction home?
Like a complete unknown?
Like a rolling stone?

The song is about a rich girl who’s taken a major fall in status and circumstance. It’s been theorized that Like a Rolling Stone is an ode to Edie Sedgwick, with whom Dylan was rumored to have a brief relationship (a flirtation? A one-night-stand?).

Once upon a time you dressed so fine
You threw the bums a dime in your prime, didn't you?
People'd call, say, "Beware doll, you're bound to fall"
You thought they were all kiddin' you

You used to laugh about
Everybody that was hangin' out
Now you don't talk so loud
Now you don't seem so proud
About having to be scrounging around
For your next meal

Why’s the tune in my head? Am I having flashbacks to college when Kevin and I used to sit in the art department’s auditorium watching Warhol’s nearly unwatchable flicks? (we were undoubtedly stoned which makes almost any film endurable) Nope.

It’s the urgency, the insistence Dylan manifests in the chorus—How does it feel, how does it feel to be without a home with no direction home.

Lately I’ve been feeling more than a bit outside, unrelatable. Warum? Neurofibromatosis type 2, thenkyouveddymuch. It’s classed as a rare disease. An estimated one in 33,000 people worldwide are blessed with this lovely shit. Also, every single case is slightly different—more or less intense. Me? I’m in worse shape than my mother and sister but, at 65 (average age of death for this disorder), I’m still alive. Yea me. Surgery, recovery and rehabbing have been a full time gig for five or six years now. It's what I do (plus reading and petting Cake).

Given the uncommonness of Nf2, most people don’t understand what I have. They can see how it effects me—I’m deaf, wobbly as all hell, half my face is saggy, my eyesight’s not great, my head and hands shake horribly (essential tremor disorder), I’m occasionally plagued with swallowing problems and sometimes I’m in a wheelchair. What they don’t see is how isolating this is.

When people (in real life or online) talk about issues they’re having with their own devastating health—like ALS, CANCER or multiple sclerosis—they, generally, don’t need to give an entry-level lecture on what the hell they’ve got. Specifically, with cancer, everyone has had a friend or relative who’s survived or died from some brand of it or another. It’s a known thing.

What I’m getting at here is this, I sometimes wish to jump into convos about common symptoms me and other assorted diseased souls may be experiencing—the sadness and horrors of dealing with our diseases as well as the funny aspects (yes, Nf2 can have amusing bits!). I don’t though. Why not? Because, if you don’t already know what Nf2 is, it takes bundles and scads of words to explain. Someone pouring out their heart on Shoutyface or Threads does NOT need or want me inadvertently stealing their spotlight. I surely don’t mean to—my intention is to commiserate and offer the support of a fellow shit-health warrior. Admirable aims don’t guarantee salubrious outcomes though.

There’s one person, my pal Michie, who knows what this is like. She and I are around the same age. Neither of us can paint anymore. We’ve both been deaf for about 20 years. I’m walker bound and she’s in a wheelchair. She understands.

Back to Like a Rolling Store though—I have a home and a direction. It’s nothing new that I’m a complete unknown. I’m not scrounging for my next meal. Still, the chorus rings in my head.

How does it feel?