Documenting

😦 Today 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.

🙂 Lola found us a few months ago. She’s a Boston Terrier rescued from 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.)

🙂 The cats now take the transition kindly, though its beginnings were tenuous.

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

😀 WE SAW HAMILTON ON STAGE. <— a gift which gives forever on 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

😦 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’s 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.

🙂 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.

🙂 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.

🙂 Please enjoy some more gratuitous photography.

“IN OR OUT, GERTRUDE!” I yelled from my parents’ bathroom floor with my wholeass hanging out; she stood in the doorway, frozen in another sudden round of figuringouthowtohelp (colloquially known as “Wife’s Heart Attack,” but not often because no one wants to somehow escape physics and become inadvertent conjurer of any more health problems.)

Thank goodness the rest of my family was outside by the pool. Thank goodness my wife was still in the kitchen mixing arepa dough. Thank goodness that someone was there, and that that someone was the only person in the world I’d want to find me in such a state after obviously falling off a toilet.*

My family is so good to one another. My big brothers are the best big brothers out there. #changemymind

The other two falls happened .yesterday morning at home. Neither was from a toilet, and so are far less entertaining stories.

I’m proud to have remained on the “I can get up from this so no need to worry!” circuit for so long. Yes, I know that by saying this I might somehow escape physics and become inadvertent conjurer of a bad fall. But I can still say it, so I will. My back and legs might not be listening, but you are, so thank you.

*no bladder or bowel productions were involved in this, or any other fall. we did laugh hard enough once the door was closed that peeing on the floor became a concern.

I haven’t been purposefully absent and uninteresting on the internet, I swear. <—-(I was interviewed)

I’m digging keeping busy — every day is full of challenges, whether awful or hilarious or tedious or joyful. They are challenges both of life with MS and of living within the human condition; it’s only fair if you entertain one, you do so in equitable kind with the other.

I am thrilled to be working with NAMI Mid-Carolina again this year on their Minds on Main campaign. If you live in Columbia, SC you may see this poster (right), and soon a billboard near downtown!

I’ve been busting a rump on book cover design, and have had three private commissions in addition to some success at my online store. You can find me on Twitter too.

Then as icing on the gluten-free cake, I was honored to speak at the University of South Carolina’s CreedX conference with fellow members of Yoga for Everyone on the topic of dignity.

As someone who barely remembers any other “normal,” I spoke about how when my disease symptoms began presenting in middle school, I erred on the optimistic side by learning how to incorporate comedy into my clumsiness. I never felt dignity was something that would be afforded to an overweight, clumsy teenager so I found a way to make people laugh. Chris Farley was one of my earliest mentors in this pursuit — he was overweight and used clumsiness to his advantage. People weren’t uncomfortable around a funny fat guy.

It wasn’t until I began doing yoga that I began seeing myself — my body — differently. Yoga for Everyone is designed for people with disabilities because our  physical needs are often different than the able-bodied. I tried regular yoga classes for a while and felt disheartened by not being able to keep up. Yoga, after all, is about making your body change directions. Changing directions is not something I’m very good at doing. YFE offers me a chair, sandbags, and trained volunteers. Sometimes I’m just fine taking class unassisted, but on the days I’m barely cognizant I know I’ll feel better by the end of class and that I am safe.

This face is why a Medium Margarita only happens once a year

The last several weeks have seen days where symptoms vacillate within their own time frames. It’s normal now to altogether lose the ability to speak if I spend too much time upright, it’s normal for dizziness to try to commandeer the day, it’s normal to lose sensation in my [feet/legs/hands/lips/mouth], it’s normal for a beautiful day to be too hot, it’s normal to begin choking at random times without food or liquid around, it’s normal to submit to overwhelming fatigue (then the cruel juxtaposition of overwhelming fatigue with a neurogenic bladder!). My Livedo Reticularis reappears every afternoon (and I am still a Google Image search result for “Livedo Reticularis”) but I’ve got no idea what that even means.

I could spend all of my time navel-gazing about that exhaustive but incomplete list  of ills, but then I’d miss out on something else that might be more worth my time.

I mean, just scroll back up to the top of this post, reread, and try to tell me I am anything but lucky. 🙂