Hanging off a ledge,
The aching hole beneath my dangling feet
is waiting to devour me.
I try to scream, but my breath is caught
as my fingers curl
around slippery thoughts
and jumbled words
and suddenly I’m falling–
tumbling faster and faster
into the abyss
Fact: Young adults with Dysautonomia often face such severe symptoms that they are left tragically ill and socially isolated during the prime of their developing lives. Because the symptoms of these conditions are often invisible to the casual observer, most Dysautonomia patients don’t look sick. This tends to lead to a lack of understanding and support for the person suffering.
What is Dysautonomia?
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, temperature regulation, etc.
In May, I was blessed to receive a power chair to aid with mobility. It is red and black (Go Pack!) and actually really cool. I’ll admit, I’m still not 100% comfortable being seen using it. Yes, I know that seems a bit shallow. It’s really not that I care about what people think of me or my disability– I am not ashamed to use it around campus or in class or downtown. I am, however, a bit embarrassed to use it on the always-crowded bus. There, I take up a full row of seats and, because of me, people must stand. I just feel guilty- as if I’m a burden. Not sure how to solve that. Anyway, here’s a little look at my new ride. 🙂
Ever wondered what a J-tube looks like? Well, wonder no longer! This baby gives me all my nutrition and medications. It bypasses my paralyzed stomach and goes straight into my jejunum. But…do you see the problem with this picture?
I’ll give you a hint: in order to get the nutrition, the tube must reside INSIDE your intestine. This little tubie got ripped out when I passed out and fell down the stairs (#DropItLikeItsPots). It’s just been that kind of week. Oh yeah, and by the time anyone decided to do anything about it, the stoma was completely closed and the balloon left inside was infected so turned into a full-out surgery that REALLY knocked my down about ten steps. Ugh…
This week I got my first ever wheelchair. We found it on Craigslist and it just so happened to be the perfect fit for me. Years ago, if someone suggested I’d need a wheelchair, I would have laughed. But now? It’s become reality. One of the major challenges of having Dysautonomia is that I never know when I barrage of unpleasant symptoms will hit me. I might think I’m okay, then a second later find myself lying on the ground. My blood pressure tanks and I faint, often without warning. Sometimes my legs are too wobbly to walk or I lose feeling altogether. Even on ‘good days,’ I can only walk so far before I am overcome with crippling fatigue and pain. As you can probably imagine, this makes going out in the ‘real world’ and doing ‘normal’ things pretty difficult…
My mother tells me that I shouldn’t accept this as my reality…that if I own it, I will never escape. At first, I really dwelled on her words…but now I can boldly say I disagree. Honestly, my using a wheelchair has been harder for others than it has been for me. People either pity me or feel uncomfortable seeing me using it. I wish I could tell people not to feel that way…I mean, I do not feel sad about it or feel sorry for myself. It’s a pretty easy transition, and has actually allowed for a better quality of life. I understand where my mother is coming from: to some, it may appear to be a step backward. But it is quite the contrary. It’s a step forward- an opportunity to regain some control over my life.
I am constantly embracing new realities and trying to adapt to them the best I can. I am learning how to continue living and thriving despite unfortunate circumstances. The past few weeks, I’ve learned that “giving in” is NOT giving up. Accepting new ways of life is not losing control…it is gaining it. Whether it’s standing, sitting, walking or rolling– I plan to live my life to the fullest.