Life As A Zebra

“The primary purpose of the Life as a Zebra Foundation is to receive and administer funds for the purpose of education and charitable contributions for education, prevention, treatment, and research of various rare, invisible illnesses including, but not limited to, Ehlers-Danlos Syndrome, Dysautonomia, and Vasculitis.

Why “Life as a Zebra?” In medical school, students are taught to diagnose patients based on the condition that’s most likely. This idea goes along with the saying: “When you hear hoofbeats, think horses, not zebras.” The horses are the likely explanation, while the zebras are less likely. A medical zebra, then, is a person with a rare medical condition.

Katie Dama Jaskolski and her sister, Allie Dama, co-founded the Life as a Zebra Foundation after both girls were diagnosed with rare medical conditions.”

I’ve always admired Katie, she has persevered through so much! She is so beautiful and strong. You’d never know what she is going through by outward appearances; just a part of invisible illness.

She has to work out heavily to keep the pain away – she has no choice.  She doesn’t get to relax or take a “day off” workouts; her condition doesn’t work that way.   She has to wear a neck brace while she runs to prevent dislocation.  When she gets severely dehydrated, she has to get infusions.  I could go on and on.

I’m a bit of a zebra myself, with no diagnosis for why meningitis likes to sneak up on me every few years; as well as recurring bouts of mono.  Generally, people don’t believe me when I tell them this.  They give me that “look” (like you’re exaggerating but I’m going to nod and say oh wow even though I don’t believe you)….because it’s not something that is common.    But my doctors know, sparrow hospital knows, butterworth hospital knows, my family and close friends know.   – and I guess that’s all that matters.  But there is always a fear of “is this headache the start of another hospital stay?”   There is some post traumatic stress from seeing infectious disease control in my hospital room trying to figure out what was wrong like an episode of “House”.  But never an answer.  No definitive reason why my body acts like it does.  But it has defined me, and how I treat others.

I wanted to help raise awareness for her foundation; but also do something cool for her because she is such a rock star to me.  So I asked her if I could photograph her.  Hair stylist and make up artist Carleana Delacruz from Hair and Body Elements gave her time for hair and make up, and Katie went on the hunt for a zebra gown.

I hope you’ll take away some lessons and inspiration from this post.  First and foremost, never judge someone by their appearance because you simply do not know what they are going through!   Second, don’t give up if you are facing medical crisis – be your own advocate the push to find your diagnosis.  Third, through extremely hard work and with hope, you can persevere, and finally – if you know a Zebra be a support system! (and gentle hugs!)

To visit Katie’s website, visit: http://www.zebranation.org

Here are some of the pictures from the day.

 

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