Category: Disability Awareness

I have never considered myself to be a disabled person. For most of my life, until the last almost three years in particular, I have been determined to act in such a way that was in my mind nothing like a person with that particular distinction. And that was so wrong of me on so very many levels. It was also, ultimately, to my own detriment. Complications from hydrocephalus and other things have been the making of me over the last almost three years, but gosh I wish I’d never found who I really was in the way that I have. However, nothing in life is reversible, and so much I have found is truly remarkable because I know that every person is marvelous in the eyes of God.

There was a social media post that I saw pretty recently by a mental health provider. In this post (and I am paraphrasing) she says that after a traumatic event occurs in our lives or to our person, we must mourn the person that we were, and cheer on the person that we are becoming. For me, and in my heart, that person is a disabled person. My issues are so broad now after a remarkably traumatic physical event a few years ago. Anything and everything was new and had to be relearned. I don’t remember things very well. I get mixed up in my head and my thoughts are jumbled at times and my speech takes a hit when it tries to execute those thoughts. Skills that were once sharp are now rusty. I cannot stand in the same spot for very long, or upright period, without feeling faint and like I could fall over. Walking is hard. Moving at all is hard. Coordination is iffy. Movements are at times involuntary, And on and on. Socially I am seeing a side of others that I never have before. Which is both good and bad. My temper and impatience are at times off the charts-and not in a good way. Things and life are just so different. I miss aspects of the person I was and being able to blend seamlessly into society.

All of this being said, however, hasn’t left me broken. On the contrary, it has left me with a renewed sense of self and purpose to my life. And it has given me something mighty to overcome and Someone even mightier in Heaven of which to cling. The disabled aren’t less. We are mighty and we are tough with thick skin. I hope I can spend the rest of the time I have here on Earth showing others just how much.

When I first realized I was chronically ill I was 35 years old. That would probably seem strange to those that know me given that I’m almost 37 years old, but here I am in a hospital room on day two of having a prolonged eeg study of my brain. Life. Is. Weird.

Often times, I think that those of us born with a condition of any sort, but especially one that is typically debilitating like mine is, learn to push past fear and labels and just keep going. We don’t consider ourselves to be chronically ill, or only our medical condition(s) but rather just ourselves. There is a survival instinct that is engrained in us down to our bone marrow when we often don’t think there is any end in sight. Life is a never ending journey of hospitals, misconceptions, tears, joy, and making friends with hospital staff because where they work is your “safe zone” and it just makes sense to get to know them too. They’re apart of your world for life a lot of the time. And they’re also interesting and whip smart, and when you’re inquisitive super awesome to get to know. Hospital food can sometimes be pretty tasty too.

There is no one person to blame when you have a condition. The condition is there to be dealt with and hopefully survived. However, I think what many folks find unusual about me is that I don’t hate God for the traumas I’ve experienced as a result of mine. I know that those traumas aren’t His fault and that He is the only thing that matters. He is the still small voice at the back of my brain telling me to just keep going. That knowledge has made all that difference in this wild and wonderful journey that is my life.