Invisible Illness Awareness Week

I don’t consider my MS invisible anymore. I barely noticed that there could really be anything wrong about my life. Generally because I’d only received, from pediatricians to Medicare “you just need to lose weight Ms. Fattyfatty Burgerpatty.”

Fair enough. I have after eight always needed to drop a pound or ten; only hearing from doctors that all of my problems were related to my weight was an underhanded but brilliant way to prescribe eating disorders.

I only continued to gain weight. Peers seemed unnavigable but there were always desserts. Neurological symptoms began to unmask in middle school. I just needed to lose weight.

One of my first after-Dx (@28yo) neurologists left in view a pad with “OBESE” scrawled in allcaps across the top page. I had just lost 75lbs.

I changed neurologists but found that none of them could journey past my pounds. My neurologist now is in a different city and is incredible.

I’m not able to maintain injured astonishment anymore. I no longer have the luxury of anger. I have had to accept that I am not lazy because moving my body is too difficult. That it’s okay to leave dirty dishes in the sink. That it’s okay to have a high level of disability and find happiness.

What a cruel trick on yourself to not seek joy.

I could (and still someday may) list every one of my Sx. Let’s instead take a hard left into a generally chronological list of the things of which I am proud and should keep remembering:

  • First in-a-book published poem (high school)
  • Published multiple times in college Literary Magazine
  • I spent a college summer in Italy and at nearly 300lbs walked miles across countryside and major city.
  • Had a small exacerbation in my Italian dorm, then still climbed to the top of some of the world’s largest cathedrals. The Byzantine narrow upwards-tunneled stairs are a badge of horrific physical honor. I got to look across all of Florence in Brunelleschi’s Duomo. I climbed to the top and walked and fell down on the roof the second-largest cathedral in the world. ^pic^
  • I’ve been to Pompeii, Rome, Venice, Florence, Milan, Urbino, Orvieto, Pesaro, Capri…
  • … and in Padua I got to see the late Byzantine/early Rennaissance fundamentally famous works of Giotto di Bondoni (Time’s Man of the 13th Century!) in the Scrovegni chapel.
  • Learned more about modern art and decided Duchamp’s signature from his most (in?)famous work of art (The Fountain) would be my second tattoo.
  • Oh and of course the college degree in (you guessed it!) Art History with a minor in Italian
  • Went to the Washington, DC Rally to restore Sanity and/or Fear (Stewart, Colbert)
  • I’ve made a 829′ jump off the tallest building in Las Vegas.
  • I made it down and up those Dali-esque stairs at Amicalola State Park
  • I married my best friend at the Supreme Court of New York City then honeymooned on Broadway. We just celebrated our eighth wedding anniversary and I may sometime write this incredible movie-ready romance.
  • I got to ice skate at 30 Rockefeller Plaza
  • I worked on design for a project at the state museum
  • I was design lead two years for the local chapter of NAMI on a regional fundraiser.
  • I designed a billboard in downtown!
  • We got to meet Daveed Diggs at a clippng show in Chapel Hill. Shit, omg, Daveed Diggs. You guys. Use TouTube; if you don’t know, now you know.
  • I went whitewater rafting.
  • I got to create logo and t-shirt designs for SC Pride
  • I was design lead on two annual fundraisers for Protection & Advocacy for People with Disabilities.
  • My wife and I received from a dear friend TICKETS TO HAMILTON.
  • I got to create the logo for the Yoga for Everyone class/community
  • Maintained 100lb weight loss for 8 years (until chair)
  • USC TED talk speaker
  • I’ve had poetry published in the Jasper Project and selected for community projects (poetry on city buses!)
  • I’m creating book covers for independent authors
  • I performed in Martyna Majok’s Pulitzer-winning script about disability, Cost of Living. I was Ani.
  • Please enjoy all of the relevant but unorganized images below:

DO go chasing waterfalls

The worst part isn’t the fall but the frozen body’s failure to respond; like something electric hitting a heavy surface, whatever batteries by which movement is made are abruptly disturbed. Some days now I cannot move my body at all, fall or not.

Regardless, my wife and I celebrated our eighth wedding anniversary with a drive through the mountains. Autumn leaves were vibrant, waterfalls were located, and one of the dogs needs not to be left loose in the cabin on winding unfamiliar roads. All 60lbs of Warren clambered along the driver’s left shoulder. Unsuccessful neither at getting up front nor causing a terrible backwoods accident, he clawed between the seats into my lap. Thrilled with his communicative victory there was much excitement.

But oh sweet country savior, those toenails.

Do you remember the giant claw-nail on Jurassic Park’s velociraptor? That is all of Warren’s nails. Intensely painful on human thighs (puncture bruises, scratches, torn pants) but even a gentle tip-clipping triggers him. Tail tucked, he trembled once behind a curtain.

We’ll figure it out buddy. Good boy.

We voted the day before this long and loving kerfuffle. Lines at our small precinct. People stayed a respectable distance from one another and cars snaked around the back of the building.

On the roof’s front precipice a bird in silhouette kept its wings spread over everyone waiting to cast a ballot. We’re still trying to figure out its origins, but boy howdy was it a regal welcome to all.

Anticipated Surprise pt. 2

I am grateful to no longer be corded to the tiny box and that there are no more infrared cameras in the bedroom. This whole experience was novel the first day despite some acceptable inconveniences. The cord attached to me began to be a troublesome chain connected to a small plastic case on a long strap. When I could stand, it was not fully, pulled by the attachments connected to my skull.

My head is so happily naked.

My hair is full of the waxy gum that held the electrodes. Though its extraction a petty trauma, I got two scalp massages for my trouble.

The worst part of the last three days was Wednesday. I fell off the bed at least ten times, and couldn’t get up from the floor for an hour after the second set of 5. It’s okay though; YouTube was on auto play and I am grateful to have had something to listen to. Eventually, I was back in mattress town.

Thursday I could barely get off the bed and my body commanded me to remain still at any exhausted cost.

Today is Friday. I’m still having trouble getting out of bed but I can.

I will retrieve at least a modicum of movement by tomorrow, and I’ll be able to get back to practice-walking without a fanny pack dangling 18″ from my shoulder.

Nobody wants a fanny pack, no matter its strap.

These bruises from yesterday are already starting to fade and those injuries will heal before or by the time we vote.

Vote.

Some days are bad, and…

…some days are good, and some days don’t don’t happen at all. – Mark Gilligan, “Lodger”

Surprise Anticipated!

Sunday I broke my top left incisor. I went to the ER & instead of lip stitches (whew) got a dentist appointment for 8am Monday morning.

I’m embarrassed. It wasn’t even from a fall! Ok, so here’s the scene:

I’m sitting up in bed, enjoying a veggie smoothie in a large glass beer stein. It was essentially a large, solid mug with a large, solid handle and I’ve used it successfully for Nutribullet smoothies forever. Suddenly I hard-sneezed as I took a sip, felt the bite and a crack. At first I thought it must be the stein and frantically tried to clean and stop the blood.

I ran my tongue, started, and grabbed my phone. In selfie mode there it was: half of my front tooth was gone. Cat was in the car, then turned around to spirit me to the ER. The dentist took hours out of the next day. Ugh pandemic bills, amirite?

In summary, however, my tooth is fixed.

Today I was attired with an eeg headwrap. A masked technician spent a couple of hours explaining the device protocols, and off handedly mentioned the hardships of connecting electrodes to a long-haired scalp. My hair isn’t long but it is thick. I asked if this fit would would be easier if maybe I just shaved my head. Surprised by this candor, she hesitated. I had Cat get the clippers and take off most of my hair. No patient had ever done that, she laughed; I was assured that this would be a story.

I wear this head wrap until Friday afternoon; I will also see my hair again for the first time in its current close cut condition. Surprise anticipated!

The most aggravating part of the next 72 hours will be the cameras recording me in two directions. Also, I’m carrying a long-strapped fanny pack wherever I go. It’s going to make it difficult to get to the toilet, despite recommended additional hydration. I mean fine; I only drink coffee and water anyway. But now the bedside toilet is no longer bedside, so in addition to the difficulty of simply moving my body easily there, I’ll have a maze to run while hanging on to an expensive electric device.

I’m scared of getting hurt in the next 3 days, but if a mouse can solve a maze, so can I.

the brain machine

Your body is, first and foremost, your brain’s arguably-fashionable bone machine. It is a complicated suit of some armor controlled by what your brain commands. You can argue, but in every case that little resting mass will win.

I know my body cannot get “better,” but I can make it stronger and more capable. From invalid to adequate, I’m comfortable saying with the pride of knowing how profoundly rewarding being physical could be. This morning’s routine:

  • 20 push-ups (standing against a wall)
  • 2 laps walking the hall
  • 8 step up/down backwards on the staircase
Happy 10th Birthday Lola!

I’m proud of this. A few years ago, I’d have been embarrassed to make this kind of workout brag. But this is more than I’d have been able to do last year. Though still difficult to get out of bed, I can.

As she is a former yoga instructor and current Licensed Massage Therapist, I’d be a dink for not receiving help from my wife.

Always listen to your wife.

  • 20 push-ups standing against a wall – I’m trying to strengthen my left side, and core work
  • 2 laps walking the hall to help knee flexion, foot drop, balance, stability, strength & stamina
  • 8 steps up/down backwards on the an inside bottom stair – strengthen hip flexors, thighs, gluts & balance

I’m going to stick with this minimal routine but increasing attention to various elements like flexion and foot drop. The #1 goal is strength. When I do fall, hitting the floor seems to short a switch in my brain machine then blah blah paralysis blah. I won’t be able to move for at least 1-2 minutes, but when I can move I want my arms to be able to help me get back up.

While you can only give so many middle fingers to your own brain, each one is worth its cause. Oh, and stretch. And drink water. That really is good advice. Fight me.

Maple Syrup Fingers

I had no tenable idea of what a seizure was. I didn’t know that that was what I experienced. While it was happening I thought I was active in the moment and talking to Cat, asking if my fingers were sticky. When I saw the look on her face, I went on to assure her that I was okay and there was nothing to worry about it was just weird. I was used to new symptoms and sensations rolling up to dishevel my baseline.

When it happened again, I with difficulty touched Cat’s leg to tell her it was happening again. “Are my hands covered in maple syrup?” I asked, then saw her pull her phone out and begin recording.

I wasn’t actually talking (I was 100% certain I had been). The video showed me sitting, hands held up, fingers spread. I licked my fingers to prove they weren’t sticky because why is there maple syrup in the bedroom? I sure as shit wasn’t going to touch the comforter. I stared at her and began to make popping sounds with my mouth. Instead of carefully crafted words there was nothing. As the seizure ended, my words came out at first unintelligible, like buckshot of sounds.

eeg, seizure, epilepsy, ms

So then I got an EEG and diagnosed with epilepsy. I’m on Lamotrigine now, have had no more partials in months but because of frequent auras am scheduled for the 2 day brain helmet thing for additional readings. With the seizures now more or less controlled, I can instead work on walking. I know MS is progressive and I’m not slated to truly improve, but I stick by the”use it or lose it” philosophy. As long as I can do it, I’m not going to stop trying.

I turn 40 tomorrow, and what I really want is to go hiking. It’ll be too hot to do this tomorrow, but autumn will prove more accommodating. Plus, leaves changing along a cool Blue Ridge Parkway drive with both dogs sounds heavenly to both of us and to both dogs. I’ve got a walker and a wheelchair and am ready for this.

what a good boy

Oh yeah — we gained, unanticipated, a new dog. Neither of us wanted another pet, especially an assumed underfoot larger dog. His tail was between his legs, no collar, unfixed. After speaking to him, he followed our car into another neighborhood. Cat got out and he crawled to her on his belly, peeing. She brushed off some of his filthy coat, picked him up and put him in the space behind the seats.

We do all fit here, and they know it.

We were on our way to vote curbside in the 2/29 primary election.We called him Leapday Warren, and he put his paws over the seat and seemed relieved and happy to be with us. Lola stayed in my lap.

When we got home we put him in the backyard. He quickly busted free, ran up the front steps, into the house and directly on to our bed.

He got a hose bath and we changed the bedclothes.

they lay

We looked for his owner. He was sweet and we assumed his family would be missing him. On the other side, he was collarless, emaciated and profoundly unfixed. Unclaimed, Warren became a dog with a new home. He and Lola became quick best friends, he’s been collared and fixed. Check out his Insta: warren_ate

https://www.youtube.com/watch?v=9TKifo6NGAg

By the time the pandemic shuffled our world’s mortal coil, I was finally becoming less immunocompromised, and my wife was building her business successfully. We were beginning to metaphorically stand on greener grass.

I’d been living in bed long enough that self isolation was obviously not my strongest apprehension here. I’m scared for my wife, my family, omigod what happens to our pets if we kick it, and we’re horrified for and grieving our population having to juggle several giant, horrible issues at once.

Her name was Breonna Taylor. His name was George Floyd. His me was Eric Garner. His name was Ahmaud Arbery. Her name was Sandra Bland. His name was Philando Castile. His name is Jacob Blake. … On and on. And on.

If you can’t afford to make a donation to the Black Lives Matter movement, you can put on a YouTube playlist that donates its proceeds on your behalf with a watch. Click here to do that.

Please stay safe.

Time Flies

A year after that first round of Lemtrada infusions, COVID-19 upset scheduling my second (which is ultimately better for my overall wellness as the treatment center is in an infectious hotspot.) It’s still difficult to do most stuff, but I’ve stopped having terrible falls. I can still walk short distances with a walker . I have grab bar to help me in and out of bed. Most importantly, my year-after MRI showed that no new lesions had formed!!

A fair amount of Sx (vertigo, eyeball ticks, talking, swallowing, lassitude, “cog fog“) remain but I can’t get back what I’ve lost. In case that sounds dim, know that I am currently not experiencing anything necessarily new, am walking better, have an incredible wife who keeps me safe, and my feet are ticklish again. Lots of good. Except the feet thing.

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

thumbnail (3)

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.