The Unique in Disabled.

When I said it out loud it makes complete sense that I take a shine to the “broken” animals — the dejected, the forgotten because I am also fighting a silent battle in my own life to help educate and advocate for not only specially abled animals but also for myself…. an epileptic.

It is a very surreal and scary moment to be 22 years old sitting in a crowded college lecture hall on a sleepy Monday morning taking notes one moment and the next moment “come to” surrounded by a group of police, EMT etc., asking me if I knew where I was at, who the president was and what year it was. I was frustrated. Scared. Upset. My brain knew EXACTLY what I wanted to say but I was struggling to get my brain and my mouth to fall in line together but something was shorting out and I could not seem to push any words out to the chaos of people surrounding me as they placed me into an ambulance.

I was 22 when I had my first grand mal seizure. They never figured out WHY I started having seizures (my brother had juvenile epilepsy whereas I did not, but apparently gifted myself with idiopathic epilepsy as an adult) but since that initial diagnosis I have been robbed (twice) while having a seizure (the one instance they stole my jacket and shoes in the middle of winter on my college campus so I had the honor of walking barefoot to their campus police department), I have been grilled about what drugs I was taking that caused me to have a seizure (since a 22 year old covered in tattoos cannot POSSIBLY be drug free), I have been discriminated against at workplaces — asked if it was contagious, asked if they had a vaccine so their kids did not catch “epilepsy”, let go from jobs after being honest and open with them about my epilepsy and once even coined as a “liability” by a former employer despite working there several months with no issue until they had found out I had seizures. I have been poked, prodded, babysat like a child, mountains of medical bills, hospital stays and then the very real concern of SUDEP — sudden unexpected death of person with epilepsy. Which means one day I may have a seizure and never wake up. Statistically speaking every year more than 1 in 1,000 people with epilepsy die of SUDEP (according to epilepsy.com) SUDEP gets epileptics who do not have their seizures controlled but in my case it is “idiopathic” which means they do not know what causes my seizures so any treatment they recommend is more or less a “crap shoot” in hopes it sticks.

One of my many overnight EEG sessions. The perks of having strangers watch you sleep all night while hooked up to monitors and machines in a strange bed/environment (and you cannot have your phone or watch TV or any other normal activities before bed).

I guess as I reflect on my recent birthday that in all of the stigma that has surrounded my epilepsy…my life that it does not come as a shock that I want to push to better educate & advocate for specially-abled animals! The misunderstood, the forgotten — those that people look at with a pang of sympathy that we are all capable of love, empathy, compassion, understanding and patience (whether its pets or people!). I have been through so much since being diagnosed with epilepsy and learned so much but I learn the most daily by my “land of misfit toys” because they are resilient, always have such a cheery outlook and despite falling down they keep getting back up.

I need to keep getting back up. And continue to work to educate the world that having a disability is not a death sentence! It is not just for the tears or sympathy or attention — it boils down to education and advocacy. So just remember that whether you are talking to, working with etc., a person or pet (whether their disability is apparent or not) to always give them love, kindness & patience.

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Posted June 2, 2022 by Suzi Langer in category "Awareness", "Miscellaneous

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