Journal entry #6 – neuropathy

Three hours to go before my alarm will shout encouragement at me. I’m exhausted. No matter how exhausted I am, I have to stick with my morning workouts. Hemiparesis and spasticity don’t wait for me to be prepared. They show up, uninvited and unannounced, rudely staying until they decide to leave on a whim.

Tiny pieces of wire, sharp as thin glass, bite into my arm as I rest it on the pillow above my head. The skin of my torso throbs; my right hip and glute throb with the sensation of icy fire; my right leg feels as though ghostly hands are pounding away – like a meat tenderizer on a chunk of beef. My foot feels the worst, though. Like skin is being torn away, layer by layer, and I somehow have an infinite amount of layers. It doesn’t stop, and I can’t remember what it feels like to not hurt.

This is neuropathy. Thanks stroke.

It’s [already] been a long day… But it’ll get better. :)

I don’t know what triggers me anymore.

What’s wrong?

Oh, nothing, really. I’m just anxious.









A burden.

A hindrance.



Working my ass off to simply go check the mail.





Frustrated. (Yes, let’s list that one again.)

I’m in everyone’s way, all of the time.

No one likes a complainer, including me. I don’t like me.

I’m extremely sad and worried and anxious, over things that usually make me happy; then I’m so very frustrated and angry. Then the struggle eventually comes to a close and I can finally feel appropriately happy.

Then the cycle begins again. Sometimes it only lasts for a matter of hours and other times it can last for months.

So, this is what mental illness is like? I don’t want it. Someone give me a refund.

Refund all of my stolen days of happiness and calm. Refund the revolutionary road trip with the tours and activities I slept through. Refund those days to anyone who’s given their own time to worry about me. They don’t deserve to have paid for my problem. It’s my problem, so I should just deal.

But then again, there’s the fact that I can’t deal.

Mental illness is just as impactful as physical illness.

I can do this.

I can get out of bed. I can do the cleaning. I can teach. I can go to lectures. I can speak to a room of doctors and medical professionals. I’ll be doing it again in two weeks’ time. I’m not in hospital or hospice.

But some of the people I care about are in hospital or hospice. And, without depression and sadness, they shrug off the anxiety of wondering whether or not they’ll wake up again after the nap that’s become necessary following a day in bed.

I can physically do so much mentally, I’m fragile and feeble in exact comparison.

I don’t mean to say that I’m suddenly not physically disabled. I am. Disabled, I mean. I still have difficulty managing my spastic tone, hemiparesis, vision loss, anomic aphasia, and all that other good stuff.

I know it’s not a choice. Just like those same people, my friends and colleagues, didn’t ask for a degenerative and/or incurable disease, I didn’t ask for my incurable mental illness.

Today, I’ll work out again, despite being exhausted from last night’s adventures with my niece and nephew.

Today, I’ll struggle and become overwhelmed, but I’ll silently recite numbers and facts, and then I’ll be fine.

I’ll respond to messages, work on paintings, and likely go into another days-long cleaning frenzy – but I’ll find a way to control my energy output and maximize it to sustainability.

And if it doesn’t work today, I’ll try again tomorrow.

So, there it is. That’s where I’ve been during these months of silence. I’m sorry. I want to be consistent about my communication – I intend to be, but… you know.

As most of you know, I’m diagnosed with things that [now] seem obvious. Generalized anxiety disorder, major depressive disorder, bipolar II disorder.

If someone tells you that they’re depressed or anxious, don’t tell them to respond or manage it in a certain, cheerfully positive way. That may not be possible for them, and the suggestion that something so complex could be fixed so easily… don’t you think, if that were so, it wouldn’t be an issue?

Just be there, the way you would if it were something physical, whether it’s a long-term diagnosis or a result of a temporary matter. Just be there.

Misremembering is better than forgetting

Remembering Grace, again.

And again.

This year, I thought it would be 9 years within the hour. Nope. It’ll be 9 years in 48 hours and 38 minutes.

Memory difficulties suck.

She’d be 8 this July.

There’s too much to write. I’ll sleep on it.

Thinking of you, Gracie. Always am. ❤

New batteries make my brain go ’round

I squealed after setting my cell phone on the kitchen counter and excitedly bounced on my toes – while holding onto the counter, of course – for a moment, then turned to place my medicine bottles back in the cupboard above my head.

It must seen strange, my looking forward to another surgery.

Let me explain. Around the bbeginning of December Dr. Schiess had mentioned that my battery was running low and would need to be replaced. Several weeks ago it had decreased enough that I was required to learn to walk without much input from the neurostimulator; a little frightening and worrisome, to say the least. I got the hang of it after round two or three days and I’m currently walking without assistance, though very oddly and with my ataxic gait easily notable.

It is so interesting how quickly a brain can adapt to sudden changes, and how efficiently it can compensate for deficiencies should it be lucky enough to do so.

This is not going to be a huge surgery, not like the initial installation was. I’ll be released on the same day. Though, to be fair, I was released the day after a surgeon drilled a hole in my skull before installing wires in my brain. So, not really sure what that says about being released on the same day…

Efficient. That’s what it says. Medicine has become incredibly efficient; it will only become moreso.

Anyway. I’m just excited.

This really isn’t a big deal. I’m relieved that my battery will be replaced. Maybe that’s why I’ve been so tired. Running low on battery.

Such quirky things, brains are. (Yes, I did think that in Yoda voice.)

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*

‘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.


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?


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. 🙂