Epilepsy Advocacy: Speaking Out and Making a Difference
By Tom McGranahan, Jr.
Why I speak out and advocate
It was the first time I’d been in a meeting of this large of a group of adults (25). I was in my early thirties and was wearing my jeans and tennis shoes. Others where wearing suits and dresses. They clearly and freely expressed their thoughts, some more adamantly than others. Each one, by tone of voice, was emphasizing their view was the most important. They intensely fussed with each other. I didn’t really know what to say or how to say it. Kept my thoughts to myself.
I started looking through the big and cumbersome binder (3” thick) that each person got. On one page observed many different statistics and figures. One statistic caught my eye. It factually stated that the number of individuals in our state – Virginia – with a disability/disorder was 1 million out of its 8 million residents.
For some reason my biggest personal cost/loss came to mind – lack of employment. I focused on those statistics, did some quick calculations and came up with some figures. After writing those down in a way to best discuss them I told myself to speak it out. But I was quite apprehensive. What if I don’t say it right? I could be scoffed and laughed at. Will anybody really care to listen? I may make a fool of myself…
I took a couple of deep breathes, which helped calm myself down. After a few more pauses in the others’ conversation – when I’d had chances to speak out – I slowly raised my right hand. After a few seconds (but seemed a tense eternity) – one of them looked over and asked me what was on my mind.
I looked down at my paperwork and started speaking …” in this binder it says there are a million disabled people in Virginia. When using that to be the average in each of the other states that means there are about 50 million disabled Americans. If each were making just roughly a meager $10,000/yr. that would equal $500 Billion per year being created…
The room got silent. Everybody was staring at me. I could’ve heard a pin drop.
Making an impact
I was astonished for I had no idea those thoughts of mine would’ve had any impact, much less that kind of impact.
At the start of the next meeting a few weeks later one of those talkative members unexpectedly came up, looked directly in my eyes and candidly stated that what I said had made that whole meeting. Then he walked away. I was stunned.
Each one of us, no matter how timid or tense we may be, must realize that we – either directly or indirectly – can make a difference. In order to do that we need to realize our value – our importance!
Now, I know firsthand that’s not easy.
Overcoming self-doubt and low self-esteem
One of the worst things about having epilepsy or actually any brain disorder is that we can’t help but be caught up into thinking about our lives in just that aspect – which takes up all our time.
But we can change that.
One way is by going online and reading daily news outbreaks… which shows us what else is going on.
Simply take a chance. Start asking a family member or friend or heck even a stranger in the store what the weather forecast for tomorrow is…
Sacrificing for what I believe in
In conclusion, here is one quiet experience – which happened by chance – which years later helped me better value my life as being of importance and should do the same for everyone.
The bus I rode over to the place where the next monthly meeting for the State Board of Virginians with Disabilities was to be held arrived about forty five minutes before the place would open.
I started strolling around the outside walkway. Taking in the flowers on the bushes and crispness of the leaves. As I was walking around I’d inadvertently wandered into a small Korean War Memorial I didn’t even know was there. After reading a few of the names of those who’d been killed – sacrificed/gave up their lives for me, for all of us – I saw that (after wiping the tears from my eyes), I could at least sacrifice my self-esteem. I felt ashamed for getting too worried or too anxious to at least speak out and help make a difference.
So I started to speak out. Which shows on the “Advocacy” list on my website; epilepsyintheopen.com
Go advocate!
Now think about it; considering how so many others sacrificed their lives for us the least we can do is sacrifice our time and energy to help our societies better handle the challenges of our disorders!
Please realize we can make a difference! Advocate more! We can do it!
Tom McGranahan Jr. was born in Richmond Va., the second oldest in a family of eight. Lives with wife Angela and 2 daughters, Mariah and Arielle. He has a Bachelor of Science in Business Administration. He was a member of Virginia State Board for People with Disabilities 6/95-6/99, and speaker at Department of Education’s 3rd National Employment Conference 9/11/00. Exercises every other day at a gym and operates a residential painting business. He steadily perseveres to life’s challenges – like writing this article – even after 50% of the language section of his brain was removed in his 4th brain operation.
Visit his website: http://www.epilepsyintheopen.com/
