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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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.

🙂 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_n🙂 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 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’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.

 

 

 

 

 

“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.  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.

2 Days, 3 Falls

“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.*

IMG_9680My 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.

Title (Been a minute)

fantastic-and-safeToday I woke up, slid my sleep mask (a half-Buff which I generally just call “my nightface”), checked my cell phone clock, debated whether or not to continue laying in pleasing warmth, then silently, lazily, argued about the pros and cons of each (awake v. asleep). The need for a bathroom was the ultimate deciding vote.

You can’t argue with a full bladder.

Now I’m sitting back on a made bed with a laptop and, beside me, the espresso my wife brewed this morning and left in the fridge. She is working three jobs right now, and is now a graduated LMT.

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WE GOT TO MEET DAVEED DIGGS YOU GUYS!

In so many ways, I am the luckiest person I know because my wife takes amazing care of me.

Not that I don’t try to do as much as I can around the house — I was raised by a police officer and a nurse, and so remain trained in seeing exactly where I need to clean, but standing feels like punishment, and changing directions while standing is a sudden artform with which I am now entirely unfamiliar.

In summary: I had an excellent job from home for a couple years, the position ended, and my disease has progressed from RRMS to SPMS, I use a wheelchair now and sometimes go blind. I’ve lost a lot of use of the left side of my body. The government has stopped giving me benefits.

BUT

  1. I couldn’t have a better life partner for this silly world. She has changed my life for so many betters.
  2. I couldn’t have a better family, either.
  3. I am still making (& loving it) book covers. (over 500!)
  4. I am still writing haiku on Twitter, so that’s something (over 1k!).
  5. Cowboy passed away on his 15th birthday, but we were both home with him in his
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    Lola is a VERY good girl.

    final moments and know he went peacefully knowing he was very loved and a good boy. He’s now buried at mom and dad’s. I did not plan on getting another dog for a while but Lola found us. Lola was rescued from a breeding mill, trained to be a therapy dog, then needed a home. This is definitely her home. ❤

  6. REMINDER: Our cats are named LouLou and Little Face. Lola and Little Face are frens but LouLou, a distinguished older gentleman, cares enough only to be near Lola if there is cheese involved. Lola just wants to love and play with everyone.
  7. My life is a long, weird interpretive dance. I take artistic pride in that.
  8. I’ve already received my favorite birthday gift as an early surprise from a cherished old friend: TICKETS TO HAMILTON!!!!!
  9. Little Face is the best, most loving type of simple. Those teefs. I mean.littlefacr

 

 

 

 

 

 

Maybe I’m not “The Norm”

grapefruit-interactionI 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.

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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, 10320361_1286832031332207_250440720345772753_nI 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.

9048eadaf6c497ba8c816b637cc9094bIt 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.

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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. 🙂

 

Busy Until Baseline

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Photo by Crushrush Photography

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One of my event posters

No, really, I’ve been busy. Above is a photo from HeartBERN, a Bernie Sanders event that featured Benjamin Jealous and Adolph Reed Jr. as speakers, as well as Hillary and Trump impersonators. I was one of several designers who volunteered to help with the marketing, and my beautiful other half was a perfect Hillary Clinton — on point without being slanderous (who needs in-fighting on the Democratic side of this already-crazy fence?). Over 1,000 people showed up!

Now I’ve turned from politics to mental health: it’s time to gear up for Minds on Main 2016, and I’m honored to again be working with NAMI Mid-Carolina. This event is — speaking purely in technical graphic design terminology — my baby. Last year I got to create the logo for an event that succeeded enough to return again this year, and I hope to see it continue to grow.

12746156_10153314143778038_102705026_nIn between those things, I have been making more book covers.

Staying busy helps keep the mind off bad days; it is of no service to yourself or others to bemoan having to sit still in order to think. The “pseudoexacerbation” stuck with me for about two months, which makes me even more suspicious of its prefix. The worst has passed, but I know sometimes I’m just not going to be able to speak, swallow, or be the principal ballerina for any major metropolis.

I’m making my peace.

I see baseline again now, but if hope gets ahead of me I land right back on my butt. Did I get the living room tidy today? Yes. And I can appreciate that knowledge from somewhere I can fall knowing that the statistics of landing safely are on my side. The bedroom.

I’d heave a sigh, but only for the obligatory oxygen. I’d rather focus on the things I can — and am! — doing.

  • I am grateful that the living room is tidy.
  • I am grateful that most of the dishes are already washed.
  • I am grateful the dryer is already empty and ready for the washer’s just-spun contents
  • I am grateful to have had a poem about falling published in the current issue of Jasper Magazine!
  • I am grateful for all of the events and organizations with which I get to help!
  • I am grateful that at 215k miles, the car keeps running
  • I am grateful for my incredible spouse, who works long days supporting us.
  • I am grateful to have finished this round of physical therapy with at least a little success, and with a new Rx for something non-narcotic that helps keep me asleep.
  • I am grateful that Cowboy just as loving at 13 years old.
  • I am grateful for science. Like, just across the board. From planets in outer space to the worlds within us, thank you.

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