Pros & Cons

Unsteady

“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.

thumbnail (4)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

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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.

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Infusion week half-point

I’m halfway through Lemtrada infusion week and everything is going well. I have never been so hydrated. In the infusion center it’s difficult to concentrate and type. Brief check in. ::waves::

 

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o-OWLS-570It’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.

We’ll just call them “seizures” later.

skull-spongeBefore I completely stopped taking my disease-modifying-drug (Gilenya’s not working report 30+ lesions on my brain and spinal cord) I began having what, until proper diagnosis by an Epileptologist, we call “episodes.” None of my episodes have lasted longer than 60 seconds and I maintain both consciousness and awareness. Cat got one episode on video. I’m clinging to the assumed victory of having entertained two of these episodes ON STAGE. I congratulate myself on making anything work when under lights.

Between these episodes and a couple of bad falls, I don’t want to be anywhere but in bed.

Two full-body drops this week during which, though consciousness was maintained, the pain was enough to invite tears and engage concern over the integrity of my skeleton. So, shit’s rough. A couple good lessons learned: 1. Pyrex casserole dishes break for no man, but can result in head trauma. 2. You can fall on your eyeball.

BUT I just got to be on stage for the first time in two decades, and it felt SO right. Review here. I’m especially grateful to the cast and crew who made this production a possibility in Columbia, SC. Also, I know that I am loved and have some photos to prove it:

 

S’good. S’pose.

Jasper Magazine

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.

vegas

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.

 

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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.

53155186_10156046854668038_3992810754678980608_nMy 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).

54514360_10156060053883038_1495212805912002560_nMy 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.

Dr. Theatre

Dr. Theatre is an oft-unlisted specialist… I haven’t seen this Doc in almost 20 years but once was, how-do-you-say… very into theatre. In high school, I was a founding member of the “Red Ribbon Players” with Lowcountry AIDS Services (that was 20 years ago so I have no idea if the same organizations even exist now). I had also racked up over 1k hours back/on stage in the children’s theatre at my hometown Flowertown Theatre. I remember the pride I felt when I earned an Asst. Director credit, or when my scene partner froze on stage in a live show, or when I was allowed to write/perform my own monologue and used it to come out of the closet where as many people possible could experience my teenage anguish on stage (sorry Mom & Dad!).

Ok, so in a nut shell, that. All of which somehow leads us to today. *takes breath*

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Rehearsal is 6-9pm tonight, and I could always be more off-book. So…

And unending thanks to Trustus Theatre for choosing this script to bring to life.

 

Take the good, Take the bad…

maxresdefaultI 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!download (1) 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.

 

 

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