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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Pseudo-ble

“I have had a better hold on my symptoms for the last several months,” says the silver lining proudly. And for that I am proud, and I am grateful. Things started getting rougher right around Christmas, culminating in a full week of the kind of daily pseudo-exacerbations that really make one tickle the chin about needing the prefix “pseudo.”

air-stone-2The end of last week began seeing the escalation from moderate dizziness/clumsiness to the kind of fishtank-aerator-inside-the-body level of disability that brought me more than once to tears. Yesterday was less severe a day, so it gives me hope for today being a better grasp at baseline.

Monday I fell out of the chair at my PT’s office. Went to sit, ass off-center just enough to pivot the seat with my body towards the ground. My arms are still luckily quick to respond, and kept me from eating the trash can. I don’t know whether to be embarrassed or glad that there was a witness.

Despite the best efforts of Urogynecology, Pelvic Floor Physical Therapy, Myrbetriq, and even (physician-recommended) Dr. McGillicutty’s Wand for Female Hysterics, I am still sleeping poorly. My bladder wakes me up 3-6 times a night now — an improvement over 12+ times each night, but doesn’t address a now infamous inability to go back to sleep after stumbling across the hall. No matter how tired I am or how many bubbles are rocketing through my extremities.

But today is better than yesterday, and I netted 6 hours of sleep (in various lengths of time) last night. Despite a bad week, I worked with clients and even picked up a new one. I am trying to move away from carbs to vegetables again (it was cold and festive for a while, damnit). Tonight’s dinner was created with less difficulty, but all the love: broccoli soup from scratch for optimal cruciferous goodness.

That is why the house smells like farts. The soup. Really.

 

 

Sweet Lord, it’s Been a Minute

I suppose it’s a time-honored tradition — 12360130_10153881975963028_4719306674604972142_nfeeling like you’ve gotten a lot accomplished, then sitting down and realizing the messes around you still exist. There are gifts to wrap in a messy room where the tree’s not yet up. The dog suddenly has to go out. Then the cat wants in. It’s time to switch the laundry, too — but an hour in the kitchen doing dishes and making tonight’s dinner invariably leaves me weepingly dizzy. I would be proud that the chicken soup for tonight couldn’t be more lovingly home made, but instead I look around from a wobbling visual field at everything left yet to do. This happens every morning… I’m recognizing as a pattern that my late mornings and early afternoons are currently kept as the property of Desperation.

I also know this pattern can change any time without notice, or that “spells” might last longer, or occur at other times TBD.

But let’s not focus on the maudlin after so much time apart.

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Reading my 2 haiku at the premiere

I’m designing a great many book covers and picking up volunteer work where it appears (follow me on Twitter!). I’ve been writing hundreds of haiku, and had two published for Poetry on the Comet — a project headed by the city’s Poet Laureate to place poetry on city buses. It’s exciting to be writing poetry again; now I just need to pick up a pencil and make myself start drawing (not only do you lose it if you don’t use it, but I stopped doing a lot of things I loved and at which I seemed good when I lost the ability and admit to now being fearful of trying. God it feels good to say that out loud though.)

12196103_10153148064583038_400264783271040078_nI’m not only still walking without a cane, something amazing and unexpected happened! Walking had become a great deal easier, but only at a a slow-moderate pace. Notching up to a jog was the hard limit my legs would not seem to move past (so to speak). My feet would fail to understand the concept of lifting, then returning to the ground in the same direction once speed and accuracy came into play. A couple of weeks ago we were again walking the boardwalk at the Congaree National Park; my walking speed had increased, so I gave jogging another try. The jogging turned to running and I kept going until breathlessness got the better of me (about 1/8m because I am only so fit). But holy Jeepers — I don’t remember running since I was young enough not to be obese yet. So congratulations to me on this, but I know I need to keep doing it now that I know I can.

The bladder? Still a thing. Did you know that Urogynecology is an existing specialty? Did you know that when they’ve reached a crossroads in treatment, they can refer you to a pelvic floor physical therapist? Because 3j5z6that also exists. Though on medication for the frequency, I’ve still clocked 49 bathroom breaks on a 48-hour period; the physical therapist has gotten me from 25 to 15 breaks in a day. The power of Zen is strong with me — even moreso because I’m getting a bit more sleep than I have in years. I have had dreams again! Only two or three, but it’s enough to let me know that REM sleep isn’t a totally absent part of my night anymore.

And now that sitting and facing the same direction for an undetermined amount of time has let ebb the worst of the dizziness and motor skill loss, it’s time to fold the newly clean laundry. Then I’ll put it away and sit again, then I will get up and take out the trash and sit, then I’ll get up and do something else which will be unfailingly punctuated by more sitting and not turning my head.

I can run. I can dream. I got this.

Problems in SC

lessons in lingering

In the midst of a disaster unlike anything you’ve every seen or imagined, there comes a moment when you just cannot sit and watch the news any longer. When the images flashing across the screen are national broadcasts of the place you’ve called home your entire life bring only shock and numbness and a glimpse of sun brings tears to rain-weary eyes, you know that is it time to get up off the couch and find a place you can give back.

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For me, today was that day. Knowing another twelve hours of local and national news broadcasts were not going to provide any more insight into the hurting in our community, I loaded the kids up, picked up my sister and headed into town. We made it to LICS, a local social services ministry serving the Lexington community, and asked where we could volunteer. The overwhelmed staff put us to…

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Finding Perfection in Imperfections

CL8ENirWUAAb5KZ (1)The weather hints at becoming cooler. I might be jumping the gun a little — it is South Carolina, after all — but that’s only because a summer indoors has high potential to induce, at best, wicked cabin fever (at worst, I imagine, complete insanity). Though still a warm afternoon principle presupposed physiology when Bernie Sanders came to town.

I made it the 1/4 mile walk from the parking area (a recently plowed dirt lot that happened to exist like a craggy red Martian field across the space between the convention center and nearby interstate) and wound to get in through a line around the building. Once inside, by some grace of the living animal that is a crowd of hundreds, I sat and a staffer immediately ran over with a cold bottle of water. I can do this, I thought. This is awesome and I want to be doing this. 

I remained in good spirits, but my words began to falter. The throbbing crowd seemed to spin around me like autumn leaves in the wind. I just needed to make it to my seat in the ballroom. Unfortunately, that seat was somewhere in this:

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The room was packed as tightly as possible with people who also “Felt the Bern.” I pressed the cold bottle of water into my neck, chest, forearms. At first it was enough to be in the palpable midst of such excitement; the room kept filling up. I realized that it was more than a shared spirit that linked us all:it was our mutual body heat in a room where air conditioning was questionable. By the time Bernie reached the stage I was slumped into Cat and couldn’t stand or speak. I looked blankly at Cat now asking me questions. Blah, blah, MS ruins another day, blah blah… but suddenly Cat was getting me up and out of the room. In what seemed a blur of the arms and legs of 100 strangers, a staffer handed me a cup of ice water, and another staffer shuffled me into the bathroom. “This is the coolest place in the building,” she said, “The seating is terrible, but…”

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[after sitting in A/C for a few minutes]

Within minutes of cold air in a [pretty clean: bonus!] bathroom I began to feel cognizant. “There’s a staffer with pigtails saving you a chair in the hall,” someone ducked in to say. I was able to listen to the rest of the town hall meeting after all, from a plush chair outside the ballroom’s door. Because of these amazing staffers I was able to walk the 1/4 mile back to the car, where air conditioning met me with cold, open arms.

Then we celebrated this warranted joy with tacos from a local carnicería.

A few days later, the A/C in our car died. Cat is, as we speak, tending to having that fixed. Because I am lucky and loved.  “Losing myself” in public is scary, and I can’t be more grateful to the woman I married for taking care of me when it becomes obvious I no longer command the necessary faculties to do it myself. Autumn is coming, the car will again have A/C, and I’m jumping at the bit to start leaving the house more. I am really into this “Remitting” part of Relapse-Remitting MS — once climate shudders off some of the heat, I hope to really get this party [“leaving the house for more than groceries”] started.

State of the Animation

On the plus side, if I haven’t updated this blog in a minute it’s usually because I’m busy hosting the much-sought, once-rare ability to do other things. Here is a less-than-comprehensive list of some of these things:

GAME OF THRONES*Urodynamics are not, how you say, enjoyable… I had no idea catheters could be used in so many varied and comprehensive ways. I am trying to remain focused on the fascinating science behind everything — ultimately we’re looking to figure out how to get back to a full night’s sleep. Having not slept through a night in over three years is taking a toll on the otherwise “Healthiest I’ve Ever Been.” I wake up to use the bathroom between 3-10+ times a night; I have had one night in the last 3 years where I only woke up once (if I remembered what day it was, I’d celebrate it annually). Once I’m back from the bathroom, adding insult to injury, I’m often faced with an inexplicable 1-3 hours of insomnia; during that time, I will have to keep getting up to use the bathroom and assure Netflix that, yes, I am still watching the Unbreakable Kimmy Schmidt for the 80th night in a row. anigif_enhanced-29809-1425847981-2

Still, when I am tired and cranky I know why. I have the opportunity to try to improve my situation because right now my health is (otherwise) pretty laudable. It has been eight months since I’ve had to use a cane to stand up or walk. EIGHT MONTHS! I’m needing to do less and less “Kimmying” these days.