To understand something we usually try to learn as much as we can about it, right? Well, I learned that disability falls into the search for understanding category as well.
The Reading Girl by Magni, National Gallery of Art, Washington, DC
I craved that understanding and enrolled myself into a place to being researcher of my disability and hopefully gain the knowledge of what I needed to make my life easier, more manageable.
I learned that I had to adopt good study habits to delve into the pre-disability me and all those skills I had gained over 39 years. I reviewed old text books of my interests, strengths, skills, experiences, and how I accomplished things back in the “good old days”. What I learned was how important it was to understand my history! That history provided context that I could insert and influence into forging of a new world that fit the way I was after my introduction to disability.
I took a self made class to learn about my disability, intimately. I found myself knowledge hungry to know everything I could about how it really happened – the biology and physiology of it all, how it affected daily functioning, what to expect as time moves on, how it affected me in various situations and environments.
I also found myself becoming aware that not all of the information and methods I was gleaning would be text book to me. I learned the discovery I was embarking on had an additional and unique set of variables – ME. Not everything was going to take ME into consideration. I had to learn how to do that myself.
You might be thinking, how does one go about these courses of studies? Well, I formed my own university where I read medical descriptions, research papers, and checked out what I could find on the internet. I looked for information and began to put into place a clear understanding of exactly what ototoxicity is. I had to take a lot notes and use a ruler to help me keep my place on the pages and a highlighter so I could keep track of what I already learned so I could refer back to it later. I asked a lot of questions to professionals and I listened – with note pad in hand. I experimented on myself with what I could do and what knocked me on my butt. I also enlisted the help of experts, friends and family, I reached out for help. Of course, this all took quite a lot of time because I knew (what I already had discovered about my disability) how important it was to not overwhelm my already overloaded brain.
This led me to another class I enrolled in that taught me to begin to listen closely to my body and brain and really hear them when they said, I’m tired. I tested out when it was time to just stop and allow myself to rest. These were the best teachable moments I gave myself! I cannot express enough how important it is to allow yourself to recognize the tap of rest when your body and brain knocks at your door. I often hid from that door, like I would when solicitors would show up. Then I’d go right back to what I was trying to do which only pushed myself beyond the rest and into exhaustion which only exasperated everything disability. I couldn’t learn a thing that way…
Most importantly, learning all I could about my disability allowed me to learned the value of effectively communicating my needs, ideas for accommodations and compensation, and my strengths in a way that got me what I needed. I raised my hand a lot and called on teachers to help me out.
I located the support group Wobblers Anonymous, where I found one of the best library of resources ever. Every single person in this group was dealing with the exact same things as I was, because of the exact same reason – gentamicin ototoxicity. Some members have lived with this condition for a many, many years. I kept daily correspondence with people and learned more than I perhaps wanted to. There are certain aspects of this disability that are very intimate and personal… However, over time I learned something more about support groups – to be careful where you place yourself in the midst of so many. I believe support groups provide fabulous methods of sharing information and support that is right on track to what one is feeling, because everyone in that group is sharing the same situation. But I also learned to be aware so that you don’t find yourself in a situation where all that is talked about is how bad things are and void of future forward ideas and possibilities. I personally wanted to hear more about the good that is still abundantly there and ready for me. So, I took that on myself and began sharing what I had learned and tried desperately to find specific directions that offered glimpses of hope and methods to compensation. That was sometimes easy, sometimes difficult to find. But here again, I found that discovery was up to me.
I believe that getting to know your disability takes time, especially if acquired through illness, disease, accident, or other means because everything as you know it, changes; your life changes. During the onset stage there may not be a lot of thought about the actual thing that has occurred but rather probably a lot more thought is about why, what now, what will happen to…, I will never… You know what I mean, we’ve all been there. All I could think about was what the heck was going to happen to me, my family, my job, my life. I was consumed by thoughts of never being able to do the things I’ve always done in my daily living and my life. I thought that I’d never be happy again, that I’d be shunned by the world, my friends and my family. I was terrified, depressed, lost. Here’s the thing about the onset stage – it really sucks but it’s really necessary… as with losses that occur in life there’s a grieving process. The onset stage can include grieving; a process that’s absolutely heartbreaking. What I figured out later was that the onset class was one that had to be taken because it set the stage for me to begin to understand my disability and what it means to me. The onset stage? I think it’s a prerequisite to the classes yet to come in one’s own Ivy League university of understanding.
University of Wisconsin Campus – Bascom Hall