[survivinglife]

I had to have swallow studies after having a small stroke during my spinal surgery and I haven’t been able to eat solid food since. I’m on an all fluid diet that runs through a tube in my nose. It sucks, but luckily someone invented chap sticks with awesome flavors. Lol. Anyway, BEFORE the surgery I still had problems like you. For lunch meat, I found cooking them helped – besides, hot ham and cheese sandwiches are way better than the cold ones anyway in my opinion. For cheeseburgers, my dad would cut the meat up for me and arrange the other ingredients on my plate like a salad – with ketchup as the dressing. Other meats I had to basically soak in a sauce. Most people dip their steaks in steak sauce, but I would have someone cut my steak into very small pieces and then I’d cover them with steak sauce like sawmill gravy over country fried steak. I can’t think of anymore but basically, I found ways to enjoy the food even if it was weird. Oh yeah, another one was spaghetti – we never had meatballs (thank God) but the noodles had to be cut for me and even then they were kinda slippery so I’d almost choke a few times. Then, because I was a weird child, one time I mixed some applesauce into the (cut up) spaghetti – and problem solved!  My brothers made fun of me real bad, but it was delicious and I no longer had to worry about choking. Lol

[survivinglife]

Personally, I love AND hate summer. I love summer cuz it gives me more time to work on my screenplays and movie ideas. But after awhile I feel like I’m fading away since I’m not learning math or anything. I’ve always struggled in school, despite being a pretty curious person. I want to know so many different things, but sometimes its really hard for me to understand some of the simplest things. I love school cuz I have the opportunity to learn and grow, but its frustrating and time consuming. Summer is more flowing. In terms of structure though, I don’t have the same structure as I do during the school year but my days and weeks are still structured. That’s just how my whole family function best.

[survivinglife]

Thank you guys! Yes, thankfully, he has been approved! I messaged his parents on FB and told them a little bit about my story with SMA and offered to answer any questions they have that only other SMA patients would be able to answer. His mom replied last night. She was very thankful I reached out and now so am I.
I don’t qualify for Spinraza or Zolgensma. I’m not exactly sure why, but I think it has something to do with the surgery I had for my spine and something to do with my lungs as well.

[survivinglife]

All my chairs had two big wheels in the back and two small ones in the front.

[survivinglife]

Wow. Kelly, your tattoos sound so cool! I don’t have any but I want some so bad! My mom and I looked into it, and didn’t think it’d be safe for me. I’m extremely skinny and have very little places to get tattoos. Plus, I might get an infection and I can’t have that. I want a tattoo though. 🙁
Although, I AM a very indecisive person so I have no idea what I’d end up getting. Lol

[survivinglife]

Ouch. Why do wheelchairs even have tiny wheels? They’ve only ever gotten in the way for me. Like you don’t see cars rolling around with different sized wheels, you know?

[survivinglife]

Yes, very true. Ain’t it weird too how we never really use our ankles but then when one is hurt we realize just how much gets done to it? I had a fractured ankle once and a sprained ankle once as well and I couldn’t even go to the bathroom without it hurting like crazy.

[survivinglife]

Thank y’all so much! I’ve decided for now that I’m gonna focus on school and my dreams, but its really nice to know that I do have options. I’m also gonna focus on exercising. As y’all probably know, its hard exercising in a wheelchair with SMA. But I wanna try doing more. I already do laps in my manual wheelchair and an arm bike machine, but that’s about all. I want to do more.

And thank you DeAnn, for remembering my birthday! I got a few books to learn more about screenwriting, The Purpose Driven Life by Rick Warren, a fantasy/Sci-fi book that I forget the name of, a dry erase board notebook that makes writing my scripts for YouTube easier, GT Sport for the ps4, some clothes, a wallet, some fruity ChapSticks, and some coconut scented perfume and lotion. I didn’t get a cake but my mom did order donuts for breakfast for her and my bro and she let me lick the spoon covered in the cream filling of a chocolate long John since I can’t eat anything solid. Oh and I got the SpiderMan Homecoming movie on blue ray with extra scenes and behind the scenes and more! I love it! I love everything I got lol.

[survivinglife]

Wow thank you all so much! My mom ended up not taking the offer, which I’m kinda glad about. I mean, yes, it’d be great to work, but I just don’t really see how it would work out. I mean, I’m still doing school for one thing… I was always sick at school so in 5th grade when I almost died of a sickness, my mom pulled me out of school to home school me instead but we were more concerned with getting my health back on track at first so I actually stopped doing school completely for awhile and when I picked back up on it, I had forgotten most of what I had learned before. So even though I’ll be 20 on Thursday and my YOUNGER brother is going to college in August, I’m still doing 6th grade level math (and doing terrible at it) and 8th grade level English and the rest I don’t even know. My mom has me focus on 2 or 3 subjects at a time. I usually do school when she gets home from work so that I can get all my exercising and whatnot done with my nurse during the day, so if I went to work with her during the day, I’d have to do all my exercising AND school between 4:45 pm (when we’d get home) and 7:00 pm (when she puts me to bed), and I just don’t see that happening. Then, although I want to work like a “normal” person, I also have dreams that I want to achieve. Yes, I’m tired of relying on others for money, but that’s mainly the selfish side of me. Currently, I have $101 to my name, which usually is enough for Christmas presents – and I haven’t even received my birthday money from my grandparents yet this year, which they usually give me a $100 gift card for my birthday and a $50 gift card for Christmas. I’d like to spend that money on me (oh, the CDs I’d buy…or the games…or the books…or the clothes…!), but I know when Christmas comes, I’ll regret it cuz I like to splurge on presents for my family since they do so much for me. It’d be nice to be able to buy stuff for myself, but I don’t need that stuff. My mom takes great care of me and we’re definitely not poor. Its the selfish side of me that wants more money – I don’t need it whatsoever though. I want to be a successful screenwriter and YouTuber. I want to write awesome movies that draw awareness to SMA and helps SMA patients who can’t afford treatments of any kind receive the help the deserve. I want to make YouTube videos that not only draw awareness to SMA but also help other people who are struggling with life (abuse survivors, foster kids, depressed people, the sick, etc. – I’ve been down all those roads WITH SMA and I want to help others make it through even though I still struggle as well, which is why my channel is called Surviving Life instead of I Survived Life.) Ultimately, if having a paying job gets in the way of the “work” I already have, its not worth it at all. I don’t need it. I’d like it, yes, but I need to succeed at my dreams.

I’ve never heard of SSI, but I know my mom has been trying to get me approved for disability benefits and I won’t get them if I get paid so all the money I do possibly get has to be from non-job sources. If my mom had hired me, she would’ve been paying me out of her own pockets and I would only have a small job, and right now I don’t get paid for YouTube or anything. My mom is incredibly smart and has worked her behind off to ensure I was set to live a good life no matter what happens.

Halsey, you live in Indiana? So do I! Lol. Personally, I’d love to live in LA or Germany instead but its all good. Lol.

DeAnn, are you talking about the new Jumanji with Kevin Hart and the Rock? That looks so good! Me and my bro wanna see that. Maybe I’ll talk him into going with me during his home stay for Christmas…

Kevin, thank you for the book recommendations! I’ll have to check them out sometime. Far From Home has had me messed up real bad since I saw it. I really hope we don’t have to wait too long for the next movie to come out… I feel bad for Marvel workers now that I think about it. They put extreme time, money, and effort into a two to three hour movie just for us fans to sit and watch with popcorn, enjoy, and then immediately ask for another. You see what I mean? Lol. Kinda messed up but God, I’m so glad they do it! I wonder what it’d take to work for Marvel as a screenwriter… What would a screenwriter have to do to get the job…ok I need to stop that kind of thinking right now. Lol. But anyway, it’d be cool to have an SMA character who gets bit by a radioactive spider, right? I REALLY REALLY don’t like spiders of any kind or size but every time I see one I say, “Don’t come anywhere near me unless you are radioactive and plan on making me superhuman.” Although, I probably not actually be superhuman – I’d just finally be “normal”. Lol.

[survivinglife]

Thank you!

[survivinglife]

Thank you!

I can’t seem to figure out how to work captions. Believe me, I’ve been trying…

[survivinglife]

Thank you Kevin. The hardest part for me in making videos and sharing them with the world is making sure people understand while also showing emotion. I have REALLY bad speech problems. Like I can pronounce my words and sentences better for people to understand but I look like a robot. And on the other hand, I can be an enthusiastic speaker but I sound like I’m speaking a foreign language that absolutely no one knows. That’s the hard part of YouTube. I don’t care if I have acne or if people make fun of me or anything like that. I need to figure out what to make my next video about though I have no idea. I think next week I’ll make a video about how going to the theater with SMA went and talk about Spider-Man… I don’t know.

I admire you working with other people for your graphic novel. I wouldn’t be able to do that with anything other than songs. My brother and I used to write songs together and that was pretty cool actually, but when it comes to stories, I prefer to work on my own. My own time, terms, ideas, etc. Do you have any idea when people will get to read your graphic novel?

I have an old power chair that stays in the garage and 2 manual chairs that I use throughout the day but for different purposes. One is custom made with a special back that (tries to) keep me sitting straight cuz my scoliosis is so bad. It is VERY uncomfortable and I can’t do much on my own in that chair (I even need help brushing my teeth) so I mainly use it when I’m doing school or just sitting around. Or when I feel abnormally weak. The other chair is a pretty standard chair that used to have a cushion but we switched it with a folded pillow cuz its more comfortable. In this chair, I need an additional stuffed rabbit under my legs to help me sit up better on my own but I can do much more in this chair like brushing my teeth or rolling myself or (if I’m feeling like Captain America) I can even change my own shirt.  I have an exercise routine that we call “roll time” where I do laps up and down the living room. Here lately I’ve been trying to do roll time outside in the driveway. Sometimes I can and I feel super proud of myself. Other times I can’t cuz I either feel too weak or cuz its raining. Last time I tried to use the theater seats was a disaster so I’m not even gonna bother. And I don’t mind being right in the front cuz I actually don’t mind loud noises and at least I know I’ll be able to hear even if people are talking around me.

Lol. True about Endgame. I mean, I didn’t see it but my nurse told me about it. I want to see Endgame too but I can’t at the moment 🙁

[survivinglife]

Thank you! It is fun to be working on a project but sometimes it gets hard, like when your arm gets tired or when your brain decides to stop thinking straight. Lol.

[survivinglife]

Wait seriously, you go to the theater once a week?! That’s awesome man! I wouldn’t mind some tips but really the main concern we need to figure out is whether or not the theater closest to us is wheelchair accessible and my mom said she’d check that out on her way home from work one day this week. Do you usually sit in your chair or their seats? Do you use a power chair?

I’m sure the movie will be good (I mean, it has Tom Holland in it so of course it will) but I’m afraid I’ll cry and I don’t like crying in front of strangers. lol but oh well.

Are graphic novels harder than books or comic books or movies? I don’t know anything about graphic novels but I’d love to know more about the one you’re working on. I’ll definitely keep y’all updated about my script. 🙂

Also, if y’all are interested, I just uploaded a video to my YouTube channel in which I talk about a song that really helps me feel better. Here’s the link if anyone wants to check it out: https://youtu.be/AwnF7m-eBu8

[survivinglife]

Yes, they are. and they are pretty fun too. though sometimes they are really frustrating – like when you can’t think of what to write to save your life. i have a severe case of writer’s block at the moment. lol

[survivinglife]

Even if there is a reason, we may never find or understand it. We are not God. But I do think everyone is supposed to help out in some way, even if its really small. You know what they say, “To not help is to hurt.” The only way I can think of for us to help is through writing and other arts, which is interesting since those ways can really reach a lot of people – if you’re good at what you do.

[survivinglife]

I’ve never heard of the series before, but it sounds really cool!

Have you heard of The Silent Gift by Micheal Landon Jr. and Cindy Kelly? Its about a mom who has a little boy that is deaf and mute yet he can receive messages from God through numbers that point to a specific verse in the Bible. Its really moving. I’ve read it 5 or 6 times and cried multiple times each time.

[survivinglife]

Yes, I was bawling my eyes out during the end of the video. It does feel a whole lot better to talk about it with y’all and know that you understand. The only thing that really helps me feel better is knowing that I can still help people somehow. I made a video over the weekend on YouTube where I talk about what its like living with SMA, but I want my next video to be about something more for people who don’t have SMA but still need help in some way – like maybe people who are contemplating suicide – I just don’t know what yet. Also, I want to write a screenplay about SMA that involves superheroes somehow but I am still working on that idea….

[survivinglife]

Yeah nowadays I don’t even use my power wheelchair anymore. My manual one allows me to gain exercise while roaming round. But there was this one time, a LONG time ago, when my wheelchair completely died while I was rolling over a speed bump in the road in the middle of the night (lol don’t ask). Luckily, I have a strong older brother. Lol. And I really really hope my BiPap doesn’t stop working on me cuz according to my doctors, I can’t breathe without it when I sleep…and everyone in my family are hard sleepers.

[survivinglife]

Lol. Yeah I get that. And I am grateful most of the time. But I get lost without meaning. I put meaning into everything I do. Even when I color the simplest picture, the colors I choose have to explain something. Its hard for me to accept that there’s no reason why I’m here and others aren’t – esp. others who were actually going places in life.

[survivinglife]

Thank you! I really appreciate it. I’m about to turn 20, but I don’t feel 20 at all. And honestly time scares me. Like I don’t know how much time I have yet everything that we can work for takes time. No one can write an entire 120 page movie script in a week and get it produced and filmed in any short amount of time. It has to take at least a year to film an average movie. I hate time tbh. And I doubt I’m the only one with SMA who feels that way.
Is it crazy or stupid that I feel guilty almost for still being alive and doing as well as I’m doing? SMA has stolen the life of plenty of innocent people yet I’m still alive. I see people with type 2 who can’t move their arms on their own and can’t hold their heads up and can’t sit on their own yet I can. Granted, I need help for MANY things and yes my head falls back when people tilt my chair back sometimes…But I can actually roll around in my manual wheelchair a bit. I don’t use a power wheelchair at all actually. I can’t type the proper way but I can use my knuckles and a pencil tip. I can play the keyboard sorta. And then there’s those people who are being kidnapped and killed and God only knows what else. And here I am still alive and doing well despite SMA. I don’t really see that as fair. And I don’t really understand why I’m still here just to watch Netflix and obsess over fictional characters. I mean, the most exciting thing that happened to me today was when I took a Buzzfeed quiz called “Is Tom Holland, Tom Hiddleston, or Tom Felton?” and I actually got the one I wanted (Tom Holland). lol

[survivinglife]

No problem! I appreciate y’all checking it out very much!
https://www.youtube.com/channel/UC45u28TdCCryfxPb3dBlviA

[survivinglife]

Thank you! I’m glad I finally joined. Its very nice to talk to people who actually understand me. I love the idea of going to the moon to escape gravity, except that astronauts have to exercise a crazy amount. but I love the idea. I also want to be a screenwriter and I have an idea for a movie involving a character who has SMA and it involves going to the moon to escape from SMA. I’m not quite ready to write it yet though. I’m still learning and practicing and I want that script to be perfect so I’m waiting until I’m better. For now, I’m currently trying to think of a movie idea involving SMA in a simpler way but I don’t know what yet. I haven’t listened to any SMA News Today podcasts, mostly cuz I’m not a fan of podcasts in general. But the ones you were talking about seem good so I’ll definitely give them a listen. We have to be more creative in pretty much all aspects of life with SMA, tbh. From the way we get to stay home alone to how we get comfortable and even how we work and what kind of job we have. I’m so glad my birth dad was into art and taught me how to be creative.
My mom said that there’s really nothing we can do about my recent turn in my spine. I already had a spinal surgery several years ago, but the surgeon was a fraud tbh. My mom said that if she had known about how all his other patients ended up, she wouldn’t have let him be my surgeon. But oh well. “The past is past, move on to better days.” – Sleeping With Sirens. Although, now I can’t have any more surgeries cuz we know I won’t come off a resperator.
My YouTube channel is called Surviving Life. I haven’t uploaded many videos yet but I could probably link it here for y’all. Hold on a second…