Harvey

Last night I remembered how scared, how alone I’d been during hurricane Harvey.

Yeah, I’d busied myself with packing donations. That was before I’d realized I couldn’t get out of the apartment building, or that the atmospheric pressure changes had impacted me as they had.

I’m embarrassed to have been so affected when others lived through things of unimaginably different proportions.

I suppose I’ll go into detail later.

So, last night, after watching video clips and photos projected onto a large screen above a stage filled with Houstonians singing something beautifully and appropriately inspirational, I spent the remainder of the show ashamedly swiping away tears. Frustrated. Angry. I’ve no reason to complain.

I’d been as helpless as I’d felt during the hurricane. Vertigo, spasticity – crawling on the floor because my stomach wasn’t handling movement well enough to stand.

I had stopped eating and drinking water at some point because it made me sick. Five days? That was it. A measly five days in a midrise apartment building. I couldn’t handle five days. Ridiculous.

Help. I wanted to help, not need help. I contacted Houston-area family and friends. If any of them needed anything then, dammit, I would find a way.

Instead, reality. Dad rushed in when he’d heard I’d been alone through the storm. Off to hospital.

It amazed me that I had smiled and joked with EMTs during hospital transport. A bout of the familiar ‘low’ had hit during the few days of isolation. The small cuts on my arm attested to that; the female EMT had noticed and pressed about it. I told her that I had accidentally cut my arm during one of my falls.

Maybe that’s why the storm had – unbeknownst to me until last night – taken a toll on me. Maybe because I had been so low, and alone, and helpless – maybe that’s why I cried while watching that recap of the hurricane.

No one had noticed. I was glad for that.

Lightning outside. I pretended to be asleep while Dad drove me home so I wouldn’t have to see the lightning. Sometimes thunder and lightning don’t bother me at all, sometimes they do.

But now, like last night, I just want to paint and then go to sleep.

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Journal entry #4

Tomorrow, I will be cheerful.
Tomorrow, I will be positive.
Tomorrow, I will have energy.
Because today, I just can’t.
Today I am hurting.
Today,
I am not okay.
And that is perfectly fine.

Just writing that made me smile. See? Already getting there. 🙂

Journal entry #8

This is too on point to not share.

I’m very ugly

So don’t try to convince me that

I am a very beautiful person

Because at the end of the day

I hate myself in every way

And I’m not going to lie to myself by saying

There is beauty inside of me that matters

So rest assured I will remind myself

I am a worthless, terrible person

And nothing you say will make me believe

I still deserve love

Because no matter what

I am not good enough to be loved

And I am in no position to believe that

Beauty does exist within me

Because whenever I look in the mirror I always think

Am I as ugly as people say?

I’m very ugly

So don’t try to convince me that

I am a very beautiful person

Because at the end of the day

I hate myself in every way

And I’m not going to lie to myself by saying

There is beauty inside of me that matters

So rest assured I will remind myself

I am a worthless, terrible person

And nothing you say will make me believe

I still deserve love

Because no matter what

I am not good enough to be loved

And I am in no position to believe that

Beauty does exist within me

Because whenever I look in the mirror I always think

Am I as ugly as people say?

Because whenever I look in the mirror I always think

#LifeIsBeautiful

‘We have no control over it, but what we do have control over is whether we can be proud of our own lives. I mean, that’s something we have complete say over – it’s kind of hard to even describe – I think I’m just as confused as everyone else on how to make our lives a piece of art, but I think that’s part of the joy – simply trying.

I can stand up here and genuinely tell you that I am genuinely proud of my life.

I am so proud to be alive. I’m not saying that I don’t feel pain. I’m not saying that I don’t feel sadness and suffering and loneliness, because that’s what it means to be a human being, but I’m saying that that pain and that loneliness and that sadness is beautiful.

We live in a society that benefits off of us continuously looking for happiness and dreams and goals out here, right? If we say no, we’re not gonna go looking out there for our happiness, we are alive, and that is all we need. …

You’re never gonna be happy with what you get unless you’re happy with what you have, and that’s what you have to do with your life. You have to look at all of it. All of the pain, all of the loneliness, all of the beauty, all the friendship and the sickness and the health, and you have to lay it all in front of you and you have to say, okay, this is what I have, it’s all wonderful. What can I make with it?

– Claire Wineland

Meet Claire | My Last Days #CysticFibrosis #LifeIsBeautiful

Journal entry #7

Have you ever been sitting around, doing whatever, and then suddenly and out of nowhere you feel… different, somehow? Sort of like you’ve been locked in your body for several years and you’ve just woken up, even though you’ve been conscious all those years, you’re suddenly… aware. Alive, again.

This might seem odd but something in my brain feels… right. Finally.

I think I just changed.

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.

Depressed.

Broken.

Angry.

Tired.

Bored.

Busy.

Aphasiac.

Worthless.

A burden.

A hindrance.

Frustrated.

‘Lazy’.

Working my ass off to simply go check the mail.

Tired.

Useless.

Stressed.

Worried.

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*