I remember when I was 16-17, I dreamt of becoming an architect. Just the thought of building something out of nothing, art that people could live and work in, was beautiful to me. Even after my RA came back with a vengeance (after a total remission in my teens), the dream wasn’t lost to me. I worked hard and studied for two years before I realized that it really was just a pipe dream. My hands would hurt and swell up horribly after drawing and by the end, I could barely even hold my favorite Faber-Castell 2B graphite pencil.
It’s that time again. August, when summer is nearly over and the majority of people are thinking about the start of the new school year. There’s tax-free weekend (when everyone stocks up on $0.01 paper and $0.15 notebooks), course catalogs, college admissions essays, and first days of kindergarten.
However, this fall, for me, is different because I just found that I will be transferring at the end of this year, 2016, to a new university. I’ll tell you that I was more than a little stunned when I found out (I was freaking out, actually), because unlike other students who are concerned with rushing their studies and finishing as fast as possible in order to join the workforce, I’m battling a chronic illness. So, it’s a little overwhelming to have to make a decision on what I want to do for the rest of my life, when my future is so uncertain.
The fact is: I have a chronic illness I have to work with, so my goals need to be incredibly realistic -if not worse-case scenario oriented.
I’ve already made a lot of sacrifices becaues of my health, the #1 being my education. I’ve had to take a 3 1/2 year break to focus on my health, I’ve changed my major to suit my physical limitations, I applied for disability services, and I decreased my course load. All this in the hopes that someday, I will graduate and join the workforce too. Despite what people may think, like most all disabled folk, I do want to be a contributing member of society.
The difference between me and even most people with arthritis, is the fact that most people with arthritis get diagnosed in adulthood, after college. I was diagnosed when I was 5, which -the way I see it- affords me a certain advantage in that I can sort-of plan ahead for a career that doesn’t depend on me being able to walk, carry -virtually- anything, use my hands, or stand for long periods of time. The downside is, college life is harder for me because I have to actually deal with chronic health problems while everyone else my age is in the prime of their life. BUT I like to look at the positive. 🙂
One of my issues, though, has always been finding a career that I’m passionate about and that accommodates my physical limitations.
It really was during the time that I started my blog and started communicating with other people like me online, that I started realizing a new dream. A dream to help people like me cope with the emotional struggles of having a chronic illness and encourage them to take control of their disease, just as I had to do when I transitioned from the juvenile (in-the-dark) patient, to the independent adult patient.
It’s just as I’ve said before and I’ll keep saying, chronic illnesses don’t just affect our bodies, but our hearts and minds as well. My ultimate goal is to use my own struggles for the good and benefit of others going through similar experiences, as well as to offer guidance and support.
No matter what RA does to me, I will never stop dreaming.
I will never stop having goals for myself, big or small.
School is my biggest and toughest goal, but I won’t give up
because the one thing RA has taught me is perseverance.
Enjoy Ella’s Voice at Ella Baker Center.