Greetings! My name is Jose and I was born with the neuromuscular disorder known as spinal muscular atrophy (SMA). I want to share my life experience so I can provide some insight as to what it's like to grow up with a congenital disability, what I do in the present, and what I hope for the future.
Before I begin my story, I'll explain what my condition entails and how it affects me. At its very core, SMA is very similar to muscular dystrophy, in the sense that the disease ultimately leads to muscle weakness which carries on various health issues. I happen to have SMA type III, which fortunately is one of the lesser severe forms that results in a near-normal lifespan, though I've obviously still had to go through with my fair share of health problems.
So to start off, I guess I'll start with my childhood. Growing up, I was more or less just a normal kid. My muscles were still fairly strong growing up, and I never really dealt with any difficulties walking until I reached middle school. At that point, I was wheelchair-bound and started noticing the loss of upper-body strength more and more. I could still carry my books and feed myself with very little effort, but transferring out of my chair was an issue, as well as engaging in strenuous activities like sports (adapted P.E. class of course) and such. This was of course a problem, as preteens tend to be very self-aware and it certainly made me very self-conscious. Luckily, I always grew up having excellent friends since socializing was never a problem, though there were still a decent amount of bullies I had to deal with. Still, I never really let them put me down.
All in all, reaching high school was a fairly good experience. My condition still allowed me to care for myself like any kid growing up, so I don't feel like I was all that different from everyone else, except those times when bullies made fun of the way I walked or my wheelchair. I was glad to finally reach high school just because the amount of bullies decreased, though I was becoming more self-conscience of my body and how much weaker I was getting. At this point, carrying around books was starting to get more difficult with time, but I was once again blessed with amazing friends that always helped out--one of which is still my best friend to this day. I was definitely not as popular as I was in middle school, but I didn't care because I spent most of my time playing online games with my friends. This is where I grew a passion for gaming. I don't want to go too much into the details of my gaming habits, because it will easily take up another two or three paragraphs, but to summarize: CS, Myth, WC3/DotA, SC:BW, FFXI, WoW...you get the idea.
At this point, my older sister had 2 boys (one is now a senior and the other a freshman in college) and it was a blast watching them grow. They didn't have a father figure growing up (much like I did in a sense since mine passed away when I was three months old, but that's a different story!), so I tried my best to fill in those shoes despite being a kid. I would take them just about everywhere, and I loved attending their Little League baseball games. Those two kids are amazing, and I cannot picture my life without them. But anyway, my family is a different story and they deserve a story of their own, which I might write up if you guys are interested! Continuing with high school...
High school at this point was a breeze. I was as average as they come (except I had no chicks!). I've always had average grades, despite being in honors/AP, simply because I didn't care to excel at anything, nor did I see a point since I wasn't going to any 4-year University fresh out of high school. I suppose my insecurities made me feel like it would be too much of a struggle for me, which I regret now, but I suppose everything happens for a reason. Since my disability was progressing so rapidly at this point, I was starting to lose most of my strength in my extremities. This meant that I could no longer shower by myself, and even feeding myself was becoming a hassle. Regardless, I can honestly say that I have never struggled with my most basic necessities just because I have an amazing family that has always been there for me. I've even had the same caregiver for nearly 15 years!
I graduated a semester early because high school was just annoying at this point (<3'd gaming 24/7), and most of my friends didn't attend grad night or prom, so I didn't really care much for all those events. So, once I was out of high school, I went straight to community college but with no real plans as to what to do. Once in college, I was fortunate enough to attend with my best friend, and it was definitely a fun experience. We were (and still are) pretty big nerds, so we weren't about the college party life and thus we spent most of our time gaming.
Aside from the gradual muscle loss, my health remained fairly excellent, and I found most of my struggles to be in financial forms. Unable to really find a job, I found myself incurring a lot of credit card debt, which in fairness happens to everyone. Despite being fluent in two languages (English/Spanish), I found it near-impossible obtaining a job that was worth keeping. First, I have always struggled with transportation just because wheelchair-modified vans are ridiculously expensive, so I always drove what my parents could afford. And boy does maintaining used-up cars cost!
I eventually found a program that helps in job placement, but it was a massive letdown. I had found a job that paid nearly $16 an hour and I was a perfect fit for the position--except for one thing... They required that I handled cash and paperwork. I was in my mid-20s at this point, and my condition had progressed to the point that I had near-zero strength and dexterity. As a result, I was declined. I resorted to a different program that helped obtain certifications in basic IT stuff for people with disabilities, but at this point, my condition just made the most basic physical movements impossible. This of course meant that working at an office or away from assistance rendered me a stagnant liability.
I decided to move on and do my own jobs search. "Work from home jobs" yielded a huge amount of results, though very few were promising. I applied at various places, and it finally clicked. I began working from home as a customer service rep for roughly $10/hr, which is expected from a first time job. I was quite happy at this point; feeling self-sufficient and useful. That was of course until tax time. Being an independent contractor basically means you pay a whole lot more in taxes. Even though I was fortunate enough to work full-time, at the end of every month, I was only really earning $350. I was so discouraged at this point. I was better off just collecting disability money and doing something better with my time. Which I did.
I've recently gone back to school to finish my general college courses, and I'm actually graduating with my bachelors (business administration) at the end of this year. I'll be the first in my family to do so, and they're all very proud. I hope to find a decent job that allows me to work from home, but more importantly, that is actually worth my time by providing a decent wage with good career options. I'm pleased to say that my condition doesn't hinder me from using a computer in any way, apart from typing, which I make up by using voice-to-text software. My employment opportunities in that regard aren't much of a setback.
I remain positive as my condition allows me to stay in relatively good health and I honestly can't say that I'm not enjoying life at the present. I'm sure my family has a large part to play in this just because they've always been there for me. I remain moderately hopeful because there's been a lot of research in SMA that shows much promise, as you can read here and here, but I'm still saddened how society still fails to support those with disabilities in many aspects. For example, most restaurants or shops have super-narrow walkways or even stairs (more so countries outside the US), so getting out and visiting places is a challenge on its own. It doesn't help when people are huge a-holes either. I can't count the number of people I've encountered who use up handicap spaces without a placard, or even disability. Some guy even called me a "bitch ni**a" when I addressed him! Though, it was pretty funny watching him scurry to his car when my two nephews, who are both well over 6 feet 200 lbs confronted him.
I can't stress enough how much it helps a disabled person when you lend a hand, even for the smallest and most insignificant things like holding a door. Not everyone is as fortunate as I am to have someone around when needed most. Anyway, I've ranted on long enough, though I feel like I missed out on many other things I wanted to touch on. Maybe some other time. I will conclude with a picture of my lovely niece who is the coolest person in the world! I've only begun using Steemit recently, but I feel like I have millions of subjects I could speak about for days, so expect to hear from me soon. Peace!
-iamjmgx