I was able to play what???

Browsing YouTube earlier, as people do the day after Christmas (I guess?), I stumbled across the very last piece I learned to play as a performance major.

I don’t know how I can remember it, but I do. The sheet music is tucked away in the vocal sheetmusic book I’d taken to Carnegie Hall ten years ago. I had apparently wanted to hold on to that folder as well as the last bit of sheet music assigned to me by my instructor, Rosendo Reyna.

Ten years ago. Oy.

Asturias – Juan Quesada

Astrurias (Leyenda) – performance by Juan Quesada, composed by Isaac Manuel Francisco Albéniz y Pascual (1892); transposed for guitar by Francisco de Asís Tárrega y Eixea

Hearing that piece again, and imagining what it must have felt like to play it – great way to end the year. *happy*

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‘Lucky #13’

So, I just checked my email.

Thanks to everyone who takes the time to read this! Thanks, Alex, for writing about your stroke; it was the first book I had read after mine.

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Journal entry #3

I’ve left the apartment three times in the last week and a half, maybe. Once to Jamie and Tim’s house to create characters for a new campaign *pushes glasses up nose*, and the other two times were probably something small; I don’t remember exactly what.

My world currently consists of what’s contained inside of this 900 square foot apartment.

No wonder people don’t know how to strike up a conversation with me. Hah.

I desperately want to be as social as I used to be, and the notion terrifies me. Just a small social gathering can leave me anxiously pacing, my palms sweating, a headache pounding, my throat dry, my skin too tight, my stomach churning… I know, it will get easier as I participate more. Practice makes perfect, right? I just need to be comfortable enough to make it outside the apartment.

Before the DBS surgery, I could be found wobbling around the neighborhood, barely keeping my balance as I crossed busy intersections. People stared at me, drivers made comments out there open windows when I took a little too long to step onto a sidewalk – but it didn’t matter.

I don’t know how to get back to that.

Whatever.

Maybe it will be easier after this season. Once people are less likely to be out playing their societal roles as a consumers. Nothing wrong with that. Just makes me literally shake.

Oh, and I’m not trying to pass judgement. ‘Societal roles as consumers’ has multiple ‘s’ sounds. How am I going to improve my lisp if I don’t take every opportunity to practice correcting my lisping sounds?

Anyway.

Don’t freak out, I’m not about to hit another low. I’m just taking care of my newfound activity of updating my journal. You know, in case I forget things tomorrow.

I’d like to drive through the village to see the Christmas lights on the houses.

 

Am I sacrilegious for wanting to go see Christmas lights on the 2nd evening of Hanukkah? Am I even more sacrilegious for wanting to go see Christmas lights on the second evening of Hanukkah even though I don’t believe in a multiversal diety? A Jewish atheist. Maybe I should put up a yearly Festivus pole. Yep. Hannuchristivus, everyone!
Today’s been a good day.

I won’t quit

I stumble across the neverending desert, sand filling my shoes and rubbing skin from my ankles. Sunlight and heat glare and roast my tired body, and I continue to stumble forward, frustrated and angry. I’m just as aware of my unlikely survival as I am of the maggots wriggling while they eating away the pia mater covering my beautiful, broken brain.

I don’t know how they got there, or how I got here. My throat is scorched by sand and I am drenched in sweat. Sand occasionally flies at me in a fury to rip away more skin, more bits, more of my sanity. Maybe that’s the maggots, or maybe it’s me going mad. I don’t know. How am I enduring this?

More than the burning of the sand and sun shredding and cooking my flesh, it’s the maggots that terrify me. What will happen next? How deep into my brain will they go?

They’ve chewed away my glia limitans, the only thing left to protect my cortex. Their writhing bodies buzz in my ears and raise goosebumps on my body.

I somehow remember the mantra I’ve repeated for the last several years and calm washes over me for a moment.

Refuse to feel, anything at all. Refuse to trip, refuse to fall.

I can’t not feel the maggots obliterating my very core, though. I can’t stop tripping as the tremors in my core and legs toss me to the ground with such force that pain shrieks through me as my body begins to fail.

They’re in my cortex now, the maggots. They multiply rapidly in an orgy of bodies, eating as they sustain themselves on my brain matter; absorbing me at my core. 

My amygdala causes me to weep and scream in terror and rage as they devour it. Movement evades me, my eyesight blackens once my occipital fails; finally, I’m not half blind.

Refuse to trip, refuse to fall. Can’t be weak, can’t stand still. I watch my back since no one will.

I’ve fallen forward, wiggling determinedly on my stomach through the dunes, just like the tiny bodies in my head. I have to find a way home. Have to find a way to be useful again. I’ll rebuild, somehow.

I’m alright, I’m alright.

I can’t fail. Won’t fail. I somehow wriggle on, forcing myself to find strength to get home. Useless and alone, I’ll find my way home. Home to the one who’s never left me. I only need to keep moving. How am I still alive? 

Stay the fuck alive.

I wake drenched in sweat, my mouth dry and my throat tight. My legs are tense and tired; I think I was running while I slept. I drift away again and finally don’t dream.

It’s the nightmare I’ve had for the past several nights now. I always wake before I’m able to reach ‘home’, so I don’t know if I ever make it there.

Just like the other times, I look at the darkness of the early morning sky and smile at the hints of sunlight peeking over the horizon. Unlike the other times, I smile, take a picture of the sunrise, and stretch the aching tension from my legs. This time, I get up.

I’m going to run again. Someday. Because I’m alive, and I’m alright.

Journal entry #2

I’m so happy today. It’s the best. 

Journal entry #1

I wake rather late, but cheerful nonetheless. I don’t feel entirely cheerful; it’s a chilly, rainy morning and I know that I might get low if I don’t urge myself not to.

I wobble into the kitchen. Make tea. Start the monotonous routine I’ve come to know since the “lows” made their appearance known a few months ago.

Taking up ‘memory practice’ is a new thing for me. I have resisted in the past and countered my internal argument for it with proud, indifferent claims that I’m too young to resort to writing out my daily actions. However I’m clearly not too young.

My memory has decreased a bit with the new medication that my psychiatrist prescribed to test me on. My balance, anger, frustration, vertigo, aphasia, and several other issues have become more noticeable since beginning this medication. It’s unfortunate, but there tweaks that can be made. I just need to be patient… and not let frustration toward forced patience rule things until then.

Brain: We can do this. We can beat this.
Me: I know. *determined face*

So today I’ll try to be vigilant about withdrawal symptoms. I’ll go about this latest routine; try to change it up a little. Slowly and surely, I’ll make it. Turtles are one of my life models for a reason.

On a lighter note, it only took me two attempts to accurately solve a calculus problem yesterday. I haven’t been instructed in math since finishing high school at 16. Twelve years ago now. Oy. 
My abdominal muscles burn from yesterday’s intense workout. It’s been a while since I last gave real effort into a workout, and it burned so good.
I’ve made arrangements with Christy for next year’s  National Ataxia Foundation conference. I’ve acquired her holiday present.
I’ve scrubbed and straightened the apartment to the point of daily exhaustion and late rising in the mornings.
Is this what mania feels like?

On the downside, I’ve compulsively checked my phone every five minutes. Every. Five. Minutes.  But I’m not great about responding to messages. The idea  makes me nervous, tired.

Check phone, check Facebook, check the balances in my bank accounts, check what I last cleaned.

It’s not good enough. Scrub it again.

Another upside is that I have the energy to study. Neuroanatomy, neurology, neurological diseases, languages, coding, art history, painting techniques, color theory, functions of Ataxia, behaviors of various movement disorders, biology… I like to study again. And that’s a good thing. I’ve enjoyed the energy to return to rounds at the medical school. Now I just need to overcome the self-consciousness that keeps me from being consistent about it.

I want to cook again. Bake.

All of these bursts of energy and I’m exhausted during them. I’m enjoying the energy, though. I’m enjoying the upside.

Things will get better. Probability theory has my back on that. And so does my kitty. 🙂

:)

Vertigo is kicking my butt today. I’m unable to turn my head and less I do it slowly, lest I want the sudden, overwhelming dizziness to attack. It doesn’t help that I’ve been instructed by one of my doctors to reduce a medication that has a side effect of vertigo, blurred vision and nausea during withdrawal. So far I’ve been able to take a shower and get dressed today. It’s the little things.

But, I’m alive, and I’m happy today. And that’s good enough. 🙂

My father is heading into an operating room for heart surgery. Not sure what to think.

“Now I can smile.”

I walk to the sinks, the cubicle door swinging shut behind me. Because of the field cut occluding the right half or so of my vision, I don’t notice the woman at the sink next to me until she turns on the tap and I hear the water splash from the faucet.

I turn and smile, “Hi.”

“Hello,” She smilies back, adjusting her purple paisley head scarf as she dries her hands.

Her accent is thick and rich. Musical.

“Where are you from?” She asks me curiously.

“Texas,” I reply, “And yourself?”

Turning to reach for the paper towel dispenser, I notice the weathered rolling luggage bag next to her, just out of my line of vision while I had been standing at the sink.

Stupid field cut.

“Kerewan, in the Republic, Gambia.”

“Wow, you’ve traveled a long way. What do you think of Washington?”

She replies frankly, and I am stunned, “You are brown. I am black. In Kerewan we don’t see skin unless you are exotic; white. In America, I an only a black without a roof. But I am no longer a slave to satisfy men. Now I can smile.”

I suddenly don’t mind my field cut.

Updatiness!

It’s been awhile. Again. So here’s an update!

I’m no longer working toward completing degrees in linguistic cryptanalysis. I’ve turned my attention to neuroanatomical artistry, general watercolor, and enjoying having a reason to attend Grand rounds  at McGovern. 

The Ataxia community has seen multiple deaths this year. Considering how rare Ataxia is, many of us knew the people who passed. I’ll be setting up a memorial area on this website specifically for those who have passed from a form of Ataxia and stroke. If you have a friend or a relative who has passed from a taxea or stroke and would like to include their picture and story, please email ellie@itsneverbeenbetter.com and elisa.cammack@gmail.com .

I didn’t want to write a post focusing on it it, but I did register for the 2018 Houston Marathon with Achilles International Houston as a handcyclist. So, we’ll see how that goes.
I’m still sick from the hurricane that came through Houston several weeks ago. I got checked out, yet again, and just finished another round of medication. The dehydration is breaking, though I’ve gotten used to downing a full gallon of water each day. I’m thinking that’ll be a habit from now on. 

Also, today I heard that multiple cases of like symptom, varying in severity, have been reported and are being treated. So, that’s… disconcerting.

I went to another specialist this past Tuesday, to discuss treatment for an incident that occurred earlier this year, and was instead diagnosed with a genetic condition and am currently awaiting the results of an overarching condition. I’d rather not publicly say what it is just yet; still processing. But, what’s this mean? More meds. Yay. Also, adoption only. No babies in my future. I’m not going to risk passing this on. Oh, and, I’ll continue seeing the specialist regarding the incident.

I was finally evaluated for a wheelchair this week as well. It’s about time, right? Anyway, NOT for full-time use. However, with the neurofatigue left over from the strokes, it’s necessary in some cases.

My DPT and DOT have sent referrals for Botox injections in my stroke-affected calve, ankle and fingers, for management of increasing spasticity caused by downtime in physical activity due to the illness gifted to me by Hurricane Harvey. Thanks, Harv. #Istillhateshots

Let’s see… What else…

Traveling most of November. So that’ll be fun!

I decided on a tattoo artist last night, and finalized my desired tattoos. So, now it’s just waiting for an opening and artist rendering. EXCITE! 

I’m really glad I’m not bradycardic anymore. It would suck for my heart to stop because of a needle again. That got old fast, hah!

I really don’t know what else to say. Sorry for being gone so long. I’m back. =)

P.S.,

New sections are being added to the website. Keep an eye out!