#spinal muscular atrophy type ii

Welcome to My Life.

Isn’t it nice?

To your left,

The beaches are prohibited.

Looking to your right,

Amusement parks are unavailable.

I hope you don’t need groceries,

Or crave a shopping spree.

The stores are no longer as they were,

They now are home to Terror.

A cough stifled in isle thirteen?

Cover your face with your sleeve.

Someone sneezes a few feet away?

Leave without delay.

Reality has become virtual,

Your computer is now your school.

Study with a friend using a webcam,

Spend time with them while you can.

No one can touch,

You now live in a bubble.

Craving human connection?

Look to your electronic screens.

Don’t forget to wash your hands!

Wash them after every activity.

Oh, and don’t forget,

Keep your distance from possibility.

Life is limited,

It’s unpredictable.

Life is precious,

But very messy.

You didn’t realize it,

Or give it any thought.

Why would you?

Until you had time to sit,

And finally caught on.

You are experiencing chaos.

What a frightening existence.

You are experiencing My Life.

Enjoy your stay.

ᛞᛋ

Attempting…

Feb. 19, 2020

A promise is a promise, so here I am.

As today is Tuesday, I had physical therapy. So Zoey came early to make sure we got ready and out the door on time.

I’ve not been a morning person as of late, as I haven’t been sleeping well or staying up too long talking to my friend or reading. But this morning… I got a message that woke me up pretty quick. It was from my friend that I mentioned yesterday.

The two of us make characters for potential storylines, and are always helping each other out when one of us comes to a dead end. This was something that my friend, Jae, was having me do last night. I just now got his permission to use his nickname, created by yours truly. Gods I hate the formalities of these things.

Anyway!!

He was writing a new character outline last night and asked for my help with it. So that’s what I did. In doing so, I woke up to a rough draft of it. First thing I noticed was the height. It was my height. I guess I know why he asked now. As I continued to read, I fell more and more in love with the character. He calls her a Techno-Necromancer, and she is the coolest character I’ve read about that is based off cyborgs. It certainly got my brain going. Tomorrow I’m hoping to sketch her, but we’ll see.

Once I finished reading his work, it took me a few minutes to figure out how to say how much I love it. But I was able to type out something somewhat worthy of expressing how impressed I was, and off I went to physical therapy.

On the way there, as Jae wasn’t up yet, I had some time to read. Zoey, my aide, hadn’t read any more yesterday. So I figured I’d put some more space between where we are in the book. Plus, after reading the character outline, I got in a reading mood. Of course, this just made me speed read. Which, I’m not complaining about, but it’s much harder to stop reading once I get into the speed read mode.

Once we arrived at pt, it wasn’t long before I was taken back to the room I go into every week. Luckily, she had seen my blog before I arrived, so I didn’t have to explain too much of my improvements as she’d seen them already. So onto the table I went.

She had me sitting on the side of the table and tried something new with me. She had me pass a small ball from my left side to my right side. Scratch that-she had me do that second. First, she gave me a filled balloon. What she had me do with that was reach to touch her hand with it. I did so fairly successfully, but when I went to get her right hand on my left side, I couldn’t touch her hand. Only her arm. Which she said was good enough. I said it wasn’t. So I shifted my body weight to lift up my hand, and all of a suddenly it was touching her hand…………..and I was falling backwards. I dropped the balloon, catching my pt off guard and went to go get to it. Then explicatives started, weakly with a buttload of panic, spewing out of my mouth. Luckily, as I don’t use this language very much, this regained her attention back to me and she quickly grabbed my arms to keep me from falling. All I could see was the wall having a date with the back of my head. My heart rate went up so high.. but this little scare proved something.

I didn’t just fall. I slowly fell. I was able to keep my body from just tumbling over. This is a pretty big improvement, allbeit a terrifying way to discover this improvement, but an improvement nonetheless.

After I regained my nerve, we then proceeded to utilize the ball. If my pt held my right elbow, I was somewhat able to use my arm to grab the ball.

After that, my body was about ready to give out. Down I went onto my back. We did some more exercises and then the session was finished.

I’m sorry this is getting rather fast paced, it’s getting late and I want to submit this.

After physical therapy, I check my phone and see Jae texted me which cheered me up a bit after having an anxiety attack over not being able to do something people think I should be able to do. He didn’t respond right away, so I went back to reading.

We went to Panera, and chilled out there for a while as we ate. When we finished, we went back in line to get my dad a salad.

My day really isn’t all that interesting.

Dad was organizing his office and getting rid of some books, so I naturally took some. Luckily I did, there were a few I actually think I’ll read.

After that, bathroom then ear drops. I went to the doctor the other day to follow up on my prescriptions for my ADD and she checked my ears as I asked her to. The inner ear canal looks irritated, hence the drops.

After that I chilled in bed and chatted to Jae.

Dad and I had steak for dinner and we watched a new movie. Rush. Wasn’t a terrible movie, had a few actors I like in it.

Now I’m finishing writing this blog as I hear dad fast asleep. Which I am going to follow suit as soon as I finish this thing.

I’m told these are enjoyable…. But I’m not entirely sure as to why…. Let me know in the comments what you like about reading my ramblings and I’ll give you a shout-out in my next entry.

See you on the flip side

Starting…

Feb.18, 2020

Okay.There is no good reason for me to explain why this place became a gost-blog. Get it? Like ghost town? Yeah, I haven’t gotten any funnier. Anyway, thanks to those who said they miss my ramblings, I should be a smidge more consistent. Granted, it’s not going to revolve around Spinraza and my improvements anymore but I will try to do an entry everyday.

Let’s get started, then. I’ll begin with now.

Today - Monday

So, I started my day off as any twenty year old would. I woke up. Shocker, right? Someone might confuse me with a normal person! …Yep, still not funny.

After I finished my typical morning routine, outside I went. It was a comfortable day to sit out, so I had my aide set me up with my headphones at the patio table. I have gotten sucked into the Witcher Fandom thanks to my aide and friend Zoey. So, after she got me to watch a few episodes, I found myself stumbling across the books that gave life to the Netflix original. Best book discovery ever. In finding the books, I found Gwent. It’s similar to D&D, Dungeons and Dragons, only it’s strictly online. It is a strategic card game that I have been having a rather difficult time learning the phonetics of the game. Which is what I spent my morning learning. That is, until my friend woke up. He’s two hours behind me, so I usually try to fill my morning to make it go by quickly. I knew something was off with him the past few days, and today I found out why.

Now, what he told me brought tears behind my eyes. Ineeded to think. So, I pulled an able bodied person and decided to take a step away from the situation, and a step towards physical exertion to clear my head. The only way to do that was to get in the stander, and that’s what I did. Now I understand you two leggeds. I’ve been sore and thinking more dear since I worked out. It ended up helping both of us. The circulation didn’t just flow to my legs, it seems.

After figuring out how to remind my friend how much he means to the universe, my body seemed to also figure out how it is supposed to work. My friend asked how tall I would be if I could stand all the way straight. I found out today that I’m about 45t fin, thanks to his curiosity. To find this answer, I had to stand as tall as I could stand it. This totally wasn’t a pun 88 degrees. That’s how straight I managed today. My legs hurt.

This isn’t me at 88 degrees, but it was my today.

If this wasn’t impressive enough, this was after I couldn’t hold my head up for a good half hour before I sat down and my friend asked his question to change topics. Suddenly, I was holding my head up, and I was asked to go taller. Then, once my legs were done being on fire, I started experimenting while I was sat down again. I think a video is more appropriate than a description in this case. (Ignore the talking in the background. The girls are just freaking out)

And here’s a funny gif that shows how much I actually move

As you can see, noticeable movement. This is without a doubt something I’ve never done before.

My day finally comes to an end with my aid leaving, us bickering about who will finish the first Witcher book before the other, me helping my friend create a brain child, and watching Ford Vs Ferrari at the recommendation of my dad to get my grandfather to watch it. We both knew he’d love it. We were right.

It’s now 11:23 and I promised someone she’d have this to wake up to, so I’m just gonna put the finishing touches on this and chill with my friend for a bit.

See you on the flip side.

A New Way Of Doing Things

January 1, 2020

I’ll be making a New Year’s List tomorrow and posting it. From now on, I will be posting my art and the occasional update on my strength. Although, this will be tied into my art and poetry.

See you next time!