plentifall

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 restΒ area parkingΒ 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.Β  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.

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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.

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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.

 

 

Sad v. Grateful (SPOILER ALERT: Gratitude Wins!)

😦 25659574_10214816781995194_2043109591245021797_nToday is one year since Cowboy passed away at home in the loving arms of both moms. That goodest boy gave me almost every day of his 15 years and will 1. NEVER NOT BE LOVED and 2. now lies in peace by the lake at Grandma & Grandpa’s home. Oh, and I will carry with me for life the badass facial scar he didn’t really mean to put there; I openly take any of its blame.

πŸ™‚ Lola found us a few months ago. She’s a Boston Terrier rescued 48361091_10155887775633038_569639949100384256_nfrom a puppy breeding mill who was then trained for and resigned as an emotional support therapy dog (by us because holy heck she’s been through a gnarly can of biscuits for 7ish years and even still loves to love everyone freely.)

32900244_10216093743158425_8419554940174729216_nπŸ™‚ The cats now take the transition kindly, though its beginnings were tenuous.

πŸ™‚ The holidays have been lovely! I am lucky to have such a big, loving family.

πŸ˜€ WE SAW HAMILTON ON STAGE. <— a gift which gives forever 44944642_10155790632043038_4774538151655899136_non its merits alone, but add in 5th ROW EYE-CONTACT with Alexander Hamilton, himself and just let me know when you’ve finally hand-fanned hard enough. There are no other chills like the hundreds provided by Lin Manuel Miranda [et al]. These tickets were a gift from a close friend and priceless, published poet

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😦 Lately, I’ve been living scared of whatever my body decides to do. Now allthetime constants: neither left arm/hand nor leg trustworthy (can neither control nor predict the hard fist that leftie now maintains I mean there’s another whole post here but YOU try typing with only one hand), my vision’sΒ a little shittier, I choke a couple times each day, and for the last week or so… are those seizures? I mean, they feel like what I’d imagine a small seizure would feel like, but I’m definitely not blacking out or anything (so, um, cool?). Not too long ago I upgraded neurologists and am in the tenuous time between MRI and next appointment. The last week or so, seizure-like moments lasting 1-3 minutes have been trench coats poorly hiding behind a building’s corner, waiting under sunglasses to crime. During a post-holiday museum tour, Cat had the fancy chance of meeting me in a still, scared, speechless moment. I was so grateful to have a witness.

πŸ™‚ I woke up today not feeling [trapped in a dimmer existence/closer to the void/whatev], and though still palpably fearful I feel more… here. This absolutely helps me check in with my sanity after living an indeterminate amount of time in what was seemingly a different, much darker landscape.

πŸ™‚ I have gotten 1 of 4 parts in a Pulitzer-winning play being staged downtown at Trustus Theatre! I’ve not been on stage in [over? almost? about. see pic below.] a decade and am beyond excited to be learning lines. In fact, now with wits better about me, I should go keep doing that.

πŸ™‚ Please enjoy some more gratuitous photography.

 

 

 

 

 

“Feeling” Myself

 

a-toast-to-the-ground“That was the most graceful fall I’ve ever seen!” exclaimed the college-aged volunteer at Yoga For Everyone after I failed to get myself from Shavasana back into my wheelchair. When I thanked him, I meant it. I rarely get – and receive compliments from – fall witnesses.Β  Here is where I pop open an oldschool hand fan and say sheepishly I like to believe that my life is simply one very long interpretive dance.

My left side is mostly useless, my right leg numb, vision finding bold new ways to reinvent itself on the daily. The list could – but does not deserve to – go on. I don’t see my new neurologist until November. I am no longer receiving monthly SSDI checks and godonlyknows how to fix whatever kind of forgetful goddamn mess they’ve made.

Okay. Breathe.

IMG-9800I got an early birthday present about which I am still over the moon. I’m a huge Jay Z fan, and of course now too of his wife. You guys. It felt all like I was seeing the British royal family or the Pope or something. The tickets were for accessible seating, so we got almost the entire booth to ourselves.

Another big source of joy is Lola, our new Boston Terrier.

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Lola was rescued from a puppy mill and trained by her previous owner to be an emotional support therapy dog. She never graduated however, and we all seem happier for it. Lola loves car rides, neck rubs, and… yoga! She’s getting along famously with at least 1 (“50%”) of our cats, but Lou Lou and Lola have established their mutual love of cheese and I want to believe that that has opened up some doors.

My big brothers are the best big brothers out there, you guys. Look at the best lawyer in Columbia, SC (2017) keep me upright. ❀bbb

There is so much love in my world. My wife will be home from the grocery store momentarily. Did I mention that I still fall in love with her again every day?

Look, see – now I’m breathing again in a healthy fashion, but the keyboard is winning its battle with my fingertips. Secondary Progressive MS is already terrifying and filled with moments you are certain will be your last.

Here, let’s end with more animal photos.

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