Bob Katie 1A few months ago I received a call from my friend Jan Pfeiffer asking if I could spare a few minutes to meet her friend Katie Jaskolski, the co-founder of the LIFE AS A ZEBRA FOUNDATION.  Jan said, “Katie is a real inspiration Bob, and what she is doing to educate people on various rare and invisible illnesses is incredible.  I just know you will be inspired.”  My curiosity was peaked—and I adore Jan— so we set up a time to meet.

Immediately I was moved by Katie’s story.  She has Ehlers-Danlos syndrome (EDS) which, Katie explained, means there is a defect in her connective tissue; the tissue that provides support to many body parts such as the skin, muscles and ligaments.  EDS is often referred to as invisible because there are no outward signs.  Katie and her sister Allie Dama, who also has an invisible disease called Vasculitis, started LIFE AS A ZEBRA FOUNDATION to draw attention to these and other invisible diseases.  Katie said they came up with the name LIFE AS A ZEBRA because 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 hoof beats think horses, not zebras.  The horses are the likely explanation, while zebras are less likely.  A medical Zebra, then, is a person with a rare medical condition.

On Saturday, April 12 there is a benefit concert for the LIFE AS A ZEBRA FOUNDATION.  For more information visit http://www.zebranation.org/

After spending nearly an hour with Katie I knew I wanted to profile her in my blog.

Who/what inspires you?

I have found that inspiration often happens when I least expect it and in the most ordinary circumstances. I am inspired by people who are kind and giving for no particular reason; by people who live their lives fully, with no regrets or apologies; by people who are not afraid to stand up for what they believe in, with passion and grace; and by people who are able to fight through adversity- without becoming hardened by it- all while handling it with dignity and compassion.

What keeps me going is surrounding myself with positive, inspirational people.  My sister, Allie, who is also a co-founder of LIFE AS A ZEBRA FOUNDATION almost died from Vasculitis in 2008. She is now in remission, in grad school, and runs half-marathons.  There was a man I met in physical therapy who had ALS. He would get carried from exercise to exercise, and he could barely speak, but he always made it a point to smile and ask me how my day was.

My Ehlers-Danlos Syndrome (EDS) doctor, Dr. Lavallee, inspires me. His EDS is more severe than mine, but he works out daily; works full time; is a husband and father and has taught me to defy odds and have fun doing so!  When I first became sick and was at my lowest, I was introduced to a woman named Lisa Gigliotti.  Lisa literally changed my life. She lives with Mysanthenia Gravis and Rheumatoid Arthritis but she helped me understand through her example, inspirational books, and conversations, that it is still possible to live a life full of love, purpose and fulfillment despite having a chronic illness.

Do you have a slogan, motto or mantra?

I have so many. A few of my favorites are:

‒If it is to be, it is up to me.

‒In three words I can sum up everything I’ve learned about life. “It goes on.” ~Frost

‒This too shall pass.

‒No matter what, I always, always, always have my good health.

‒Breathe.

I have learned that a simple word can go a long way.

Do you have a lesson or thought to share?

The lesson I always go back to is what our foundation is all about; the thought that it is so important to help make our “invisible,” visible.  I learned this first hand after I became suddenly sick with Ehlers-Danlos Syndrome and Dysautonomia (POTS) in 2010. These illnesses wreaked havoc on my body and fast; yet I appeared to still look fine and healthy.  When I was searching for answers before I was diagnosed, doctors would hand me depression scales, indicating it was all in my head, and that they did not believe anything was wrong with me because I still looked “great.” I have recently had to defend myself when I have needed to use my handicap sticker. I have learned that I can’t expect people to understand without awareness and education.  It is important to me to help people fully understand that invisible illnesses are real, and can greatly affect someone’s functioning and overall quality of life.

In simple terms, it is important to always keep in mind that it is often impossible to know what someone is going through simply by looking at them; awareness and understanding are the key!   

How do you deal with stress?

I deal with stress many different ways: I surround myself with my support system of family and friends; I read inspirational, feel-good stories; I exercise; I practice deep breathing;  and when I get really stressed, I see my psychiatrist. I believe that working on my mental health is just as important as working on my physical health. There is no shame in that!

However, I would have to say what I have found to help me on most days when dealing with stress is to laugh and dance.

Anything else you want to share?

Someone once told me, “Learn to talk to everyone without talking about anyone.” That stuck with me.  Also, I have come to believe with my whole heart that life is much better when you are laughing.

For more information on Katie Jaskolski and the LIFE AS A ZEBRA FOUNDATION please visit http://www.zebranation.org/

 

 

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