Have you
ever experienced a person having a seizure? If so, what did you do? More
importantly what were you thinking at that moment of that person? Well, after
watching a Ted Talk about a specific chronic neural disease, I definitely learned
a little more than I already knew. What I mean by that is, not only did I gain
knowledge while watching and listening, but I gained an outlook, a perspective
if you will about the subject because I think some of the best educational
experiences come from testimonies. So, with that being said, the speaker in
this Ted Talk was Claire Koster. In this video, she was 17 years young, and
battling a chronic neural disorder called epilepsy. What I learned was that
there are two different categories which are petit mal, and grand mal seizures.
Petit mal was described as a "loss of control over the nervous
system", while grand mal was defined as a "loss of control over the
muscles" (Claire Koster, 2015, 0:33). Claire was diagnosed at the age of 2
years old, and experienced petit mal seizures whenever triggered. Another thing
that I learned was that sugar can affect if someone is triggered into a
seizure. Interesting. Other things that she must keep in moderation is alcohol
consumption, and of course "party" lights or strobes. Other than this,
because of her medicine, she can live and lead an independent life. I refrain
from saying a normal life because the word normal is such a construct and has a
different meaning to everyone. She further explained that like other disorders,
there is a spectrum for this one as well. She observed other individuals who
have the same diagnosis but were wheelchair bound and were not able to live as
independently as her (which I am sure humbles her deeply, even at such a young
age). So, when you hear that someone suffers from epilepsy, don't assume the
worst. In fact, in her speech she gave out some astounding percentages of what
people think about epilepsy. I won't name all of them because it is quite a lot
but when it comes to children and love, it hits me the most. So, Claire brought
to mine and the audience's attention that " 12% of people thought they
should be isolated from other children, 23% of people would not let their
future children integrate with them, 14% of people say they should not be allowed
to marry/have children themselves, and 64% of people would not marry someone
who suffers from epilepsy" (Claire Koster, 2015, 1:15). How should these
percentages and statements make a person feel? Especially someone who suffers
from it. My biggest take away from this Ted Talk, is the perspective that I
gained because in OT I believe that as our main goal. Empathize with how
someone feels and try to create a better standard an outlook for them to
provide them with the best quality of care that you can. Claire explained that
a lot of people think that their boundaries are considered a negative thing,
but she says because of her boundaries, she actually has none. At the bottom,
if you are interested, there is the link to her video which I recommend. Her
confidence and courage are inspiring.
Koster, C. (2015, December 9). Living with a Chronic Neural Disorder. YouTube.
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