Documenting

By the time the pandemic shuffled our world’s mortal coil, I was finally becoming less immunocompromised, and my wife was building her business successfully. We were beginning to metaphorically stand on greener grass.

I’d been living in bed long enough that self isolation was obviously not my strongest apprehension here. I’m scared for my wife, my family, omigod what happens to our pets if we kick it, and we’re horrified for and grieving our population having to juggle several giant, horrible issues at once.

Her name was Breonna Taylor. His name was George Floyd. His me was Eric Garner. His name was Ahmaud Arbery. Her name was Sandra Bland. His name was Philando Castile. His name is Jacob Blake. … On and on. And on.

If you can’t afford to make a donation to the Black Lives Matter movement, you can put on a YouTube playlist that donates its proceeds on your behalf with a watch. Click here to do that.

Please stay safe.

“Hold on , hold on to me cuz I’m a little unsteady.” http://www.youtube.com/watch?v=36msb_3was0

Last night Cat spotted, caught me when I began to fall while I walked up and down the hallway. It was my fault for putting this song on; yesterday I wept listening to it, for myself and the Cons. There are plenty of good changes, but let’s hold off on those because they’ll all seem more winning after this part.

You should watch that video if you feel like crying. Also, the last ten minutes of Six Feet Under. Works every time.

Getting in and out of bed without falling is one of my primary exercises right now. Bad falls* happening daily have me mostly relegated to bed. I MISS WASHING DISHES, you guys.

Sometimes there is seemingly no rhyme or reason for falling, other times my left leg lets me down again with its petulant nonfunction.

My left arm has lost a great deal of itself as well and mostly hangs limp with a clenched fist. And though both left-side body deficits, each comes from a different lesion (1 brain, 1 spine).  As I type here, I’m trying to incorporate the left hand again because it’s all about the physical therapy. I’m not yet ready to give up on my physical self.

Ready for a course change yet? I have seizures now, but medication  helps control them. The seizure meds also help my vision. Whaaaa?

In many other ways, things have improved. “Your eyes aren’t glazed over and confused,” remarked my primary care physician. #FISTPUMP

I am lucky enough to have these two sheroes making life better: a yoga instructor-turned LMT Wife and this therapy dog who’s trained to alert someone if a person stops breathing. 

MY FEET ARE TICKLISH FOR THE FIRST TIME SINCE CHILDHOOD. Unexpected return of nerve function: HOORAY! Cat is thrilled about this; she has every right to return years of tickling. My speech has improved and I feel more… alive? Than I’ve felt in months. I am as better as it gets for someone with MS + Seizures. Despite yesterday weeping at limitations I couldn’t control, today I am again doing simple exercises with renewed vigor. I am writing and making art.

Just. keep. going.

*Bad Falls” but not so bad that we ever needed to call 911. Just lots of bruises.

It’s about as difficult to type as it is to speak, so please bear with me. I no longer have control over my left hand, but still gonna just live that “right hand” lifestyle and, though typing with one hand takes its time, it will still earn me a thumb’s up.

Yesterday, with Cat’s help, I walked all the way from a rest area parking lot to the bathroom & back without falling. My legs hurt today like they just finished some kind of weird, mountainous marathon but… well, I walked.  My left leg no longer acts like it was previously trained for any activity at all, let alone holding up a human person.

I can’t wait to be back on a DMD, no matter how much it, itself, might suck during its infusion. I can only pay attention to one thing at a time right now, and I am not proud to admit missing doing the dishes. Damn straight I miss cooking, but an Aunt and my parents have ensured a week’s worth of home made dinners. I am so lucky and loved.

Thank you, Trustus Theatre!!!

The play was an incredible experience, and I am beyond grateful that my neurologist approved of me continuing my current MS DMD (Gilenya) until the show’s run ended. I’m off of Gilenya now 6 days and bad houseguests are already beginning to return with new adventures in tow. In about 8 weeks, my system will have cleared the way for a new treatment and I’ll receive Lemtrada infusions for 5 days (after a steroid infusion to make my body capable of handling all this). 60% chance of stopping disease progression, 20 % chance of IMPROVEMENT, and then the remaining percentage I guess falls into the “UH OH” category…

Goddamnit, Adventure, you know I don’t like my stakes so high.

Stratosphere Hotel. Is tall. Google it.

…Except remember leaping from an 855′ tower in Las Vegas and dazzling spectators with an unintentional-but-apparently-impressive twirling descent? Why don’t you watch that video again.

You fell down on the second-largest cathedral in the world!

…Except remember climbing to the roofs of all those cathedrals in Italy but only falling down on the roof of that Duomo in Milan? Forget about that urchin in the Milan subway who pick-pocketed you, just think about Urbino… and Florence! and Venice! and Pesaro! and Rome! and Pompeii! and, nowhere near least, the Scrovegni Chapel!

Those are just some of the higher-of-stakes things you’ve willingly and openly done (YOU know what you’re talking about, but remember that incredible rally in D.C.?), so keep going.

My awesome parents bought an electric scooter/chair for me to get around the house or anywhere in public; it’s already proven a godsend. I can, with only moderate trouble, still walk very short distances but my left leg is mostly just an accessory now (& left hand, but that’s because of both brain and spinal cord lesions).

My incredible wife still takes everything in better strides than I do. I know how lucky and loved I am. She’s rearranged her work schedule several times to take me to my new MS specialist in Charlotte, and yesterday to Charlotte for an EEG. We’ll just refer to the “episodes” as such until my neurologist’s epileptologist gets back to us.

I’m still gonna get up, go into the kitchen, wash those dishes, then maybe reward myself with ice cream because, damnit, who doesn’t love Denali fudge? Are you more powerful than ice cream with Denali fudge?

Prove it.

I woke up at 4am to get to the nearest big city & see my neurologist; I got an overview of my latest MRI and began the paperwork for a new DMD. Gilenya’s not working, so in a few months I’ll remove it from my system and begin Lemtrada infusions. The MRI showed 30+ lesions, many of which have conspired to become severe spinal cord disease. They took about a dozen vials of blood (Lemtrada), so between all that, a lack of sleep, & throbbing legs I’m ready to check out for the day.

But not everything’s bad! In addition to actively working on my health’s improvement, I was recently cast in a play! The Pulitzer-winning play of 2018, Cost of Living (Martyna Majok) asks specifically for disabled actors to be cast in two of the four roles. I’m almost two decades off the stage, but there used to be a good amount. Every rehearsal stills time and I so genuinely enjoy working with the director and castmates that I almost have forgotten that memorizing lines is. still. possible. Cat’s been working so hard, and she still gets me to every rehearsal (and doctor’s appointments! And yoga!); I truly don’t know what I’d do without her. Now, please enjoy this short clip from Cost of Living; I will be playing Ani.