#spinraza

5.31.25 Greetings, creatures of the interweb. I have a topic to present that I have been putting off for a while, and honestly as I’m writing this, I find it difficult to know where to start. Needing help to do what I need to do is a basic fact of my life, one that not many would give much thought over. There isn’t much reason to. When I speak, people do sometimes forget I am disabled. Which can…

@allthecanadianpolitics 

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.

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!

January 30, 2018

Do not become / A “new you”. / This year, / Become / A better You.

Hello there, loyal readers. This update is going to have quite a quantity of information shared with you all, so be prepared not to be able to read all of this in one sitting. I’ll have headings as I usually do so that if there is something anyone wants to skip over, it’s easier to do so.

Hair and Color

More than two months ago, I decided that I needed a change. I’d had my red hair for so long, then ended up growing it out for various reasons, and I feel like having dyed hair makes it easier for strangers to come up to me and start a conversation. So, I booked an appointment with my hairdresser. Well, not my usual hairdresser, as he moved to another salon, but this one was friends with my trusted hairdresser. Plus, she did my dad’s hair, so I figured why not?

I wrote this a while back to post as another entry, but ended up not publishing it because, well, we’ll get to that later.

November 12, 2018

Got my hair cut and colored today. I have been deliberating on getting my hair cut lately as my hairdresser moved salons, and It’s about a half hour away… My hair has been kind of a touchy subject lately. But my dad convinced me that I was beginning to look a little too shaggy, or as he so eloquently put It, “homeless”. So, I booked an appointment with Annie, who cuts his hair and my grandmother’s, but today was our first time doing my hair. She’s a really cool individual plus she’s friends with my hairdresser so I figured I’d give her a try.

I’m really glad I did! She did an absolutely amazing job! My head fell only about three times and getting it colored was painless. Between her being careful but confident, and my Spinraza strengthened muscles, and Dad when he was needed, the three of us made a good team.

Originally, I was just going to do blue highlights. I’ve missed having my hair as a talking point for strangers, and I didn’t want to do red again, so I figured why not do something totally seemingly out of character?! I’ve thought about doing crazy colors before, but I have the confidence of a… Okay, everything has more confidence than I do when it comes to my appearance or personality. Anyway, I’ve been slowly trying to get back to my old cheerful self that did what she wanted to do because It made her happy, not because she wanted to Impress someone other than herself.

So that’s what I did.

When Annie showed me the shade of blue that I was thinking of doing, it was on a ring of other colors as well. In noticing this, an Idea was forming in my head, with the conversation that I had with my grandmother playing in the background.

“May I see the purple?” I asked with curiosity.

Who said I only had to have one color highlighted into my hair?

That’s how I ended up with glorious highlights of blue and purple.

It wasn’t until about two months later that I got to refresh my glorious cosmic hair, as my hairdresser had gotten sick the day I was originally going to redo it, and then I got sick on the day I rebooked with her. Which leads me into my next heading.

A Spin On Colds

Yes, that’s right, ladies and gentlemen, I got sick recently. Directly after Christmas, in fact. It was rather an interesting holiday this year as my grandfather came down with something right before my aunt flew in from New Jersey. So instead of spending Christmas with my grandparents like we have every year prior, my aunt and I slept over at my dad’s, so I wasn’t near germs. I have, I’m sorry, I had managed to stay healthy and not get sick for almost two years this coming February. However, after three late nights, and exhibiting much more energy than I have for quite a few years, my body ended up giving in to the sick life. This time, though, something was different. This time, I didn’t go downhill like I always do. This time, I got a regular old head cold.

Yeah, I couldn’t believe it either. That first morning when my sore throat began to break, I coughed, and I sounded like I was drowning. Just like every sickness I’ve had to endure since I first started this seemingly endless battle with my own body back in 2015. My dad sounded more irritated than I can describe when he heard this cough first thing that morning, but nonetheless turned me on my side like I do every morning to get my glug out and set up my nebulizer to give me a treatment. Granted, I believe it may have been an hour that it took to get this stuff out, but the thing is, I got it out. And it stayed out. It would come back a bit every so often and if I didn’t keep up with my decongestants along with my nebulizer treatments, I’d end up getting really stuffy and would feel an allergy tickle in my sore throat, but it never went beyond this. One of the days, though, my throat hurt so much that I had to use my phone to communicate by having it read off the words I was typing. Luckily, that only lasted for one day. The day after that, it still didn’t feel great and I had to periodically have my phone talk for me, but this was all normal. No drowning in my own lungs, no wishing it would all just end, no epic depression after realizing I was sick again. Just felt… Sick.

Now, this is something absolutely huge in my life because I now know that if I do get sick, this is all that will happen. I now don’t have to live in constant paranoia that if I get sick, I might die. Why have I come to this conclusion? How could I possibly know that this wasn’t just a fluke and that this wasn’t just a coincidence? Well, first off, I don’t believe in coincidences. Secondly, I would have to have absolutely no knowledge of my own body to think that this situation will not replicate itself. Every single time I got sick before, it didn’t matter if it was from pain, stress, fatigue, whatever, I would end up going downhill and not being able to breathe without extreme fear of drowning without my Bipap. This time, I spent one full day with my breathing helper and I was actually able to eat. Which was absolutely amazing since my appetite has been rather small since my fifth Spinraza injection, resulting in me eating less and less which most likely did not help my body fight off this cold in the first place. Since I got over my sickness about a week and a half after coming down with it, my appetite has luckily increased. Dinner isn’t fun trying to get down still, but the rest of the day I am actually eating.

I cannot vocalize enough how grateful I am for being able to say that Spinraza has absolutely turned my life on its axis. If it weren’t for this incredible medication, I do not believe that my cold would have simply stayed as a cold the way it is supposed to.

A week ago, I did finally end up getting my hair redone and I am absolutely in love with it again as I actually went back to my pixie cut.

Cue cheesy smile

Written in the Stars

Even though Christmas was not at all what we had anticipated, there were a few good things that came out of it. I managed to send my friend in New Jersey a home made present created by yours truly, which in turn showed me that I can actually sew with a needle and thread now. I got photos with Santa and his wife who travel around my grandparent’s neighborhood with the fire department and a fireman came up to me with a hat saying I could come work for them any time I wished. I was buzzing by the end of that night even when I knew we couldn’t have our normal Christmas Eve dinner together. My family discovered that our long-time friends and neighbors were our secret Santa that did the 12 Days of Christmas with a gift waiting outside our front door every day from the fourteenth of December to the twenty-fifth. But what really made an impact on me this Christmas was what was in my stocking. A book. But not just any book, no, this book was a book of poetry. Light Filters In written by Caroline Kaufman was in my stocking and when I read the poem written on page eleven, I felt as though I was reading my own thoughts. For the first time, what I had been trying to explain to others, but mostly myself, was written down in this two-hundred poem book created by a female the same age as I am.

Poetry has been a fairly large interest of mine since I had to write my poem for class which I added to my video for the SMA Video Contest. Especially once my dad introduced me to The Doors when he made me watch the movie with Val Kilmer starring as Jim Morrison. That man made me want to write more poetry, then I read Ms. Kaufman’s poetry and I decide that I will follow in her footsteps, but with my own spin of my tires. So far, I have twenty-three poems written and I am not stopping there. Especially when all of this made me realize that I have been writing poetry for most of my life without even being conscious of it. I’ve always loved trying to write songs, but I could never figure out a chorus. I thought poetry had to rhyme, but I realized that this is a fallacy. Which has opened a portal that I never knew existed.

Which kind of brings me to my next topic, which is going to be under this heading because this is all pretty connected.

As I mentioned earlier, I entered a contest that was to explain what it is like living with SMA for me. I placed fourth, but I had and have absolutely no idea how to promote my creations. However, the first, second, and third place winners did. The reason why I am bringing this up is due to an email I received a few weeks back. Writing this down is not easy, even though I never knew him personally, he was and is a part of the SMA family and participated in the same contest I decided to partake in. Ryan Cotter, the third-place winner, passed away at the beginning of December due to complications caused by the disease we both endure. He was 17 years old and excited to attend college after he graduated this year and was accepted to Arizona State University’s Digital Culture degree program as he was fascinated by the creation of videos and luckily, he had the utilities to allow him to experiment and fulfill his want to create with technology.

Now, I have had this information in my possession for a few weeks now and I honestly have no idea where to pocket it. Hence this update being much later than I had intended. I am about to confess something that may or may not end up bringing hate mail in my comments or inbox, but I feel like this information needs to be out there. Ryan ended up impacting me in a way that I never imagined I could be impacted.

I never liked being around, associated with, or promoting the fact that I am apart of a disabled community. I never wanted to do the video contest as it ended up making me relive my darkest moments. I never made it all the way through each video that was also entered into the contest because I could not bare to see others like me. I never like the fact that I am disabled and never want anyone to acknowledge that I am unless it involves my limitations as I’ll end up beating myself up over something I cannot do if it is brought to my attention.

All of these things kept me from watching Ryan Cottor’s video before he passed. All of these things kept me from discovering that he and I had a lot in common and that we could have developed a friendship. All because I was selfish and did what I get angry at everyone else for doing. Judging someone before I get to know them. Due to this, I have been a big ball of guilty energy. I know that I cannot change the past, I know it’s a bit too late to ask for forgiveness, but I would give every injection I have had of Spinraza to him if it meant he could have lived the life he should have lived. However, this is only something that can happen in my imagination, so what I will do to try and set things right is to allow myself to become a better version of myself. Isn’t that what everyone else does this time of year? Make new years resolutions? Well this is mine.

I promise to become a better version of myself that has theories to suit facts instead of facts to suit theories. To know absolutely everything I can about a situation before believing I already do. To be an advocate for the disabled community that will not sugarcoat the truth to make it easier to swallow.

I may appear cynical at times, but the reality behind having such a debilitating disease is not a kind one. However, there are those like Ryan who would never allow that to be his reality, which allowed him to live life the way he wanted to. Not all of us are that fearless, but we can strive to be. The way I will strive to be fearless is to put together a book of poetry written by yours truly. Becoming an even better writer is what I will work on this year. I have taken my six months off, now it’s time to work. I don’t know if I will go to college, I don’t know if I will suddenly be able to walk with Spinraza leading the way like Venom does for Eddie when he heals him after his motorcycle accident, I don’t know if a celestial anomaly will hit the earth while I sleep and wipe out humanity’s only home, I don’t know if I will ever pluck up the courage to tell someone I love them, I don’t know if the next time I get sick that I will be able to get well again. None of us have any guarantees in this world, so we have to live it without fear and with an understanding that our lives are our own, to not let anyone else take anything away from it and only add to it.

I will be trying to add to this blog at least every week from now on. That way it will be easier to keep track of new advances in my strength and so forth.

I warned you this would be a long one. Thank you for reading until the end. If anyone has any questions, or just wants to chat, I will have all my contact information in my bio of my blog.

As this entry began with a poem, it will also end with one.

June 29, 2018

Today day started off with a trip to Cracker Barrel as I finished my Economics course yesterday. I figured I’d treat myself to a caramel coffee as my cousin had something similar when we went there with her a few weeks ago. I’m glad I did as I discovered as we were waiting for our food that I finished my class with an A, and that my C on my end of year exam didn’t bring my grade down as much as I expected. It’s been an absolutely amazing day with my aunt and grandmother, we had a Girls Day Out with breakfast to start, then Michaels Craft Store next. We bought quite a bit and ended up with some beads to make my aunt a Spinraza bracelet like my grandmother, father, cousin, and I have. This was the end result.

It was thanks to doing is bracelet that I ended up handling scissors.

This is not something I have been able to do. Ever. The amount of Occupational Therapists that tried to give me scissors that were “adapted” to “help me” cut independently... I won’t get into that. But today, I saw the scissors, picked them up with one hand, put my fingers in accordingly, and started cutting the air. So my grandmother gave me some paper and said have at it. So I did. I even cut a circle out of the paper, which I stupidly didn’t record, but I folded the paper in half, and cut half a circle to make a whole circle. I cut a double thickness piece of paper. Cutting just a regular thickness is usually difficult enough, but no I had to make myself just see if I could do it. The rest is history!!

May 12, 2017

Today, I took a break after doing an arduous physics assignment, and decided I wanted to write in my notebook while sitting by the pool. But I wasn’t entirely sure as to what to write. So an idea popped into my head. I’ll give sketching a try. Normally, I hate drawing on lines paper. But, I figured since I was doing it in my fountain pen, and I’d seen many aesthetic sketches on lined paper, I’d give it a try. Who to draw wasn’t a question at all, so I looked up Sherlock sketches on Pinterest for something to copy and set to work. The first one came out brilliantly, so I tried again with more detail. Then I finished that one with pride, looked for another to copy, and suddenly I had three versions of Sherlock.

I don’t remember the last time I drew something that came out better than I expected. In fact, the last time I drew something escapes my memory. Either way, in sketching Sherlock I am ecstatic that it came to life on the paper.

This doesn’t have anything to do with Spinraza, or maybe it does, but I just wanted to share my creation with you.