Yesterday was Easter, and usually on Easter day my family
doesn’t plan anything and we’re usually separate. However, on this Easter my
family decided to plan a trip to the lake to go jet skiing and venture in other
fun physical activities. As I am newly disabled and chronically ill, I wasn’t
so hyped. I knew I didn’t want to go the second I heard about it because I
wouldn’t be able to participate in the activities and would feel left out.
My parents wanted to
go though and asked me to go since there was no way they would leave me behind
to fend for myself. I eventually said okay because I knew my parents needed to
get out since they have been stuck at home, hospitals, and doctors offices with me for the past 6 months. At the last minute though, plans changed to just
having a party with friends and family. I didn’t want to attend this either
because I knew there would be strangers present and I hate when people I don’t
know stare at me and whisper among themselves about me. I was going to go and
actually wanted to go near the end because I wanted to get out and have some
fun but unfortunately my body had other plans.
My neck, arms, and
back twisted uncontrollably yesterday and my RA acted up which left me in pain.
It has come to my attention that I suffer from dystonia which is a neurological
movement disorder. Dystonia is what has been causing my body twisting in odd
positions. If you are curious as to what it looks like you may see it on YouTube
but I warn you its kind of hard to watch. I have it, and I even have trouble
looking at videos of it. I know that I have some other neurological movement
disorder along with dystonia but I haven’t been officially diagnosed with
either. I’m just positive I have dystonia based off of my own research.
Being newly disabled and chronically ill is hard especially
when I’m only 19. I know that many other people out there are the same way but
I’ve never actually met or let alone befriend someone online who is in a
similar situation. To say the very least, I feel alone. I feel alone because I
know no one who understands me. Sure, I have friends that listen but they can’t
relate or understand me completely. I wish that there was someone I talked to
or knew who was in a similar situation. I’m only 19 and it sucks being ill and
disabled so young because before all this I had huge plans for myself and now
that I’m like this those plans are out of reach.
I always planned on being the first person in my family to
go to college and get a degree but it seems like that isn’t going to happen. I
planned on becoming a veterinarian and helping animals along with volunteering and
helping mentally disabled children. Now all those things seem unlikely and I
kind of feel that I lost myself. I know I’m the same person but I’m somewhat
different. I view life in a different way now. Before I never realized how
precious it was to be able to speak, walk, write, and be in control of your
body movements so easily.
Now whenever I manage to get out of the house, I see people
who are walking, talking, and controlling each body movement with ease and I
think to myself “Wow, they’re so lucky they need to realize how fortunate they
are.” I now try to avoid social media pages because it pains me to see other
people my age do things I can’t. I also get upset when I see posts about people
complaining and whining about little things such as not being able to go see
the latest midnight premiere of a much anticipated movie. It gets me upset
because they complain of something so small when there are people in the world
who are struggling through so much more and they’re complaining about not
seeing a movie the night it comes out.
I know it seems harsh because I used to be like that. I used
to complain over small things and now I look back and I can’t believe how I
used to get upset over the dumbest situations. Yes, throughout my childhood I was
ill as well and would get ill in my teens but this is by far the worst I’ve
ever been. It’s worse than all the surgeries, hospitalizations, asthma attacks,
severe pneumonia episodes, depression episodes, breathing treatments, and
multiple medications. It’s worst because at least back then they knew what was
wrong. Now, they have no idea and it’s frustrating because I can’t be given any
medications or treatments. I have nothing to lessen my symptoms and pain so I
just have to power through. It’s okay though because I’m a fighter, I was born
to fight. I don’t know if you’re religious or not, but I happen to be catholic
and usually when people get sick they pull away from god. In my case, my
illness has gotten me closer to him. I know that god has a plan for me, one
that’s bigger than the plan I had for myself. Therefore, I’m not mad this
happened to me because no matter what’s to come, I know its all part of god’s
plan.
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