#sorrynotsorry

Our Father
Who art in heaven
Seriously?
What the actual fuck.

Sincerely,
Tired-and-so-done-with-being-a-patient/room-number

Hi

It’s been a long time and another year has gone by.

“A year goes by… and I can talk about it.”

5-year mark hit last November. I don’t remember when the last time I wrote was. Things have been… interesting.

Anyway, I won’t pick up where I left off. Too much has happened in the past months and it would be difficult to recap all of it. So, I’ll just start from here.

Well, I will tomorrow. Hah.

The fuck am I doing with my life?

5

I’m 5 years, 2 months and 2 days post-stroke. (Likely 5 years, 2 months and 3 days, by the time I finish writing this. It’s late.)

5 years.

5.

That’s half a decade. Oy.

3 months and 4 days since I last updated this site. Sorry about that; I just wanted to step back for a little while, particularly since my 5 year was coming up.

Adam’s the only person who remembered that it was an important day for me. For us. That thing that happened in my brain back then – that happened to us, and so we spent a few hours just being alive in the same space.
He’d stopped by after work, saw how miserable I was, turned around and came back with a plan of food and something on Netflix for the evening. I cheered up.

I’d spent the day looking at the photos, videos and notes from my therapists and others who had taught me to do things like sit up, swallow water, use inflection in my speech, convey my humanness. Swinging from sad to amused, angry to proud; feeling too much and not enough. Too much for a bipolar girl, already in too deep of a “low”, to be going through the memories by herself, and yet not feeling enough to handle that particular day on my own, alone. I’d tried to convince myself to put the things I might use to harm myself away in case I got too low – I hadn’t wanted to go past my 5 year mark alone, and I’m not sure I’d be typing this if Adam hadn’t remembered what day it was. He’s always got my back and I’ll always watch his.

November sailed past after that. A week of Thanksgiving vacation and a Blue October concert at Revention Music Center with my sister on the same day we got back from vacation.

Me and Andrea at the show

Then, December.

My father

December 1st. My father’s birthday. I’d bought a DNA test for his gift. We’d found out from my and my sister’s DNA results that we both have vastly more native American than we had imagined.

Something else: a second DNA test found an f2 gene variant.

Is that what caused my stroke? Dunno. But at least it’s no longer an “ischemic infarction of cryptogenic origin“. Now there’s potentially a why.

December 2nd. 5 years, 1 month. Two more years, then I’ll reassess if I need to.

It was around this time that a friend of mine, during a conversation with a group of friends, somewhat jokingly stated that he’d be ‘ready to go (die)’ once he’d need help going to the bathroom.
I don’t know what made me take it the way I did. I kept quiet while I angrily seethed with indignant humiliation at the memories of nurses helping me to the washroom after I no longer needed a catheter or a bed pan and was able to move more than my left arm. It wasn’t until 6+ months after the stroke that I was able to do that completely unaided. I just… I don’t understand why that comment hurt. I still try to sort it out.

Hanukkah came. The menorah that had seen so many lightings throughout the years, The Barenaked Ladies’ Hanukkah Blessings in the background, smiling and watching the candle flames dance on the kitchen counter. Comfort in the feeling of a familiar ritual. And smiles; sometimes you just need the familiar.

Christmas season in full swing. A Christmas tree, Kitty (Poseidon) batting at its lower branches, the last Christmas tree I decided that I would decorate in a living room that I would have to clean up. Hah.

The day of the Christmas party at Heather’s. I sent her a message to let her know that I wouldn’t be there for the third year in a row. Sometimes things come up that you have no control over. Sigh.

New Year’s. I didn’t know if fireworks would stir panic inside me again. They did, so I eventually curled up with my Companion Cube plush and fuzzy alpaca-shaped pillow, and tried to disappear.

Then I got back up, ate, drank, and went to bed around 1:00. On my own terms this time.

Almost a week later and I still feel okay. It’s a good thing, to be okay. Not just okay but just okay. Okay and happy with it.

I’ve been having more seizures. Plenty of simple partial (focal aware) seizures and several absence seizures – 3 in the past week alone. Maybe my medication needs to be adjusted. I dunno. I’ve learned to be patient when it comes to waiting for answers.

Thank you

The last time I did it to myself, I didn’t realize what I was doing until it was done, but I knew it was coming, and that whatever it was, it was about to happen.

Adam noticed it while it was healing, showed me the below image, then ordered and surprised me with a set of non-toxic, skin-safe markers. Now I draw on myself whenever I hit a low, am beginning to or am rapid cycling, or am in some other stage of an episode.

The markers are a primary item in my bipolar emergency kit, and I haven’t hurt myself since.

Thanks for watching out for me.

The cut was still healing the first time I used the markers.

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.

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.