Ruined Meals

Of course I misspeak — celebrity names, band names, the occasional place wherein time becomes a vague concept… but sweet ladybird lord, how can I know anymore which emotions are mine and are these feelings valid? I’ve learned that if I can’t move or get up after a fall, I will wail. I am not adept with fury. I’m likely to genuinely cry during a touching television special. Politics? My god. And I sob every time Hamilton ends.

Every. Time.

I say inappropriate things without intention, breach uncomfortable social norms without thought and everything will sound sound grosser than intended. I have ruined meals.

Every time I’ve… let’s just go with “ruined meals”… every time I’ve ruined a meal, the situation will play itself over and over as I fall asleep, flanked by similar situations as far back as high school. Horrified, uncomfortable faces of people for whom I care have become a familiar nightlight. Like the flame of a candle getting ahead of itself and setting that dangling fern ablaze.

Feeling feelings is okay – the trick is knowing from whence the feeling arose, questioning its circumstance, and either apologizing or making peace with it. Feeling is always easier than doing. I am not brilliant to know this, but my last therapist did call me a unicorn and gave me the horn which proves it. I’ve been assured that I am nice, but

if I’ve ever ruined your dinner, I sincerely apologize.

As half of this slippery slope, I have to forgive myself. I need to think about what I say before it emerges with unpredictable tone into a room full of strangers. I suppose I should forgive myself because of brain lesions ‘n all, but, well…

[insert dirty joke]

unstoppable force/immovable object

In another TeleHealth appointment with my neurologist, I was told that after I am vaccinated, we can move ahead with my second round of Lemtrada infusions. This round will only be three days not five, so I’m thinking that I’ll probably lose fewer T cells this pass (fingers crossed). It shouldn’t take as long to recover enough to see the simultaneously miniscule and massive benefits.This is where I put some of what hope remains in walking better and falling less.

Last week, there was both a “using walker outdoors” fall and a “can’t get off the floor thereby sustaining more injury long after hitting bottom” fall. Plus, I fall onto the bed a lot and can’t always move when that happens.

I take offense at my pale self for not bruising more easily. Of course I cannot be legitimately disappointed but they do serve to help validate me as a living human.

The “using walker outdoors” fall happened on the sidewalk between the porch and car. The fall is a flash during which I make batlike microdecisions. It’s a little like this:

  • BOOM

Then the aftermath

  • don’t. move.
  • anything broken? no.
  • blood? no.
  • best way to repair current position?
  • can you sit up? can you face this direction?
  • can you get on your knees?
  • can you just wallow around in that mulch for a second?
  • oh look the neighbor!
  • cat, already standing, is on top of it and retrieves masks for everyone
  • a masked hero helped Cat get me vertical and safely into the car
  • hero-neighbor is a hero.

The “can’t get off the floor thereby sustaining more injury long after hitting bottom” fall was a lot. When I fall on the bed, I can get myself back back to the bed and as long as both knees have made it onto the mattress. If they don’t, and if Cat’s not here, my only resolution is sliding backwards off the bed onto my knees. 40% chance I can get up on my own. This one of the times I couldn’t move my limbs well. It was a 20 minute affair of trying and failing and falling and uh-oh three head-to-furniture interruptions and crying because I’m so furious that my body just won’t. It won’t.

Oh, then due to emotional lability I will full on wail and gnash my teeth. I am FURIOUS with my inhumanely weak self. Feeling emotions makes me a terrible show. Afterwards, I will be exhausted in that insidious MS fashion.


Negativity calls for a hard left into pet pics.

The “bads”

I was comforted to find an article on titled “The Afternoon Slide” by Devin Garlit. It felt full of uncanny but comforting similarities:

For me, usually around 2 PM most days, my symptoms start to act up. Extreme fatigue, spasms, weakness, pain, and cognitive issues… tend to be the big ones.

Any time after noon, I’ll start feeling dark clouds beginning to accumulate through my limbs until the shy storm reaches my brain. It’s slow moving and gets worse until a peak around 4:30pm almost every day like nearly functioning clockwork. Without a solitary symptom taking front stage, we just refer to all of it as “the bads.”

At their worst, the clouds fill, tall, through the head. Fatigue makes moving a Herculean task: my legs throb, I’m slack jawed stupid, without full motor control, and pained eyes. I may lay down, but if I do I will usually be unable to move for an hour or more.

My wife described it once in a question: “You know Mary from Little House on the Prairie?” Swells of vertigo keep me from moving my neck, and my eyes will appear to not have vision. They do, but the slightest change in direction is an attack. I stare straight ahead.

That said, thank you laptops everywhere.

I’m grateful to have been able to learn the general structure of my days and adapt as well possible. Any control over circumstance is a favor.

Also Day

“The hell I’m just going to go chop that onion” she stated sternly. My wife stood over my body where It had landed.

It was the first big fall of the last several months. My left leg stopped working while in hallway-practice with my walker. I tried to take a step then ricocheted from one side of the hall to the other, slid hard onto my rib cage.

It could have been worse (always could’ve). In the second before I hit the ground, I immediately pushed the walker away to avoid it and did whatever I could to protect the head. This system has helped me get around worse.

I shouldn’t have said that out loud because that may negate it all.

I am so grateful for my wife. Without her I’d have just dragged myself back to the bedroom and waited to get back up. I mean the tv was on auto play so it was bound to end successfully with both entertainment and a clamber back into bed.

I proposed this but was shot down. She pulled up the chair. I tried to sit up and get my shins flat on the floor for a few minutes. She assisted me trying to stand (& failing) and get seated. Though I wouldn’t have been able to get off the floor without help, because it’s an incredibly stressful situation she was just as fallen.

We both went to bed early last night. Today she helped me make a pot of soup, swept up all the frozen vegetables I dropped.

Points for peas and carrots.

Then she took both dogs for shots. Then she went back out to the store.

I am so lucky and so in love.

Also, how did I make it to forty without ever having a cheese puff? Because that too.

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.


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.