While I’ve never been in a wheelchair or bedridden, I’ve been darn close. However, I made a pact to myself as a kid to live my life differently than my Gram (AKA – Grandma with the pills) and my mom because they were pretty much bedridden my whole life. My parents separated when I was 2 to 3-years-old and my siblings were much older, I was around my grandmother & my mom constantly. Due to my Grandmother’s health issues and my mom always wanting and needing to lay in bed if she wasn’t working, I honestly just thought that everyone became overweight, lost their teeth & looked old, starting around age 40.

40 years old!! That’s 4 years older than I am now!

Growing-up, my Gram needed to use a walker, cane, or was in a wheelchair if she was up and about for any long distances. My mom was similar; so much so that she would use my Gram’s handicap parking pass just so she did not have to walk far. No, she was not disabled herself (at that point). Gram also smoked like a chimney, had countless health problems and took a gazillion medications: hence her nickname, “Grandma with the pills.” I didn’t know anything different and thought every adult has trouble walking, cannot walk long-distances and would need to lay in bed for 2 days if we walked the mall for any length of time.Kendra Angela Neilsen 1978IMG_2565IMG_2560IMG_9254

(From top left to bottom right – baby, about 2/3yrs old, about 4yrs old & 5/6yrs old)

Needless to say, the day I made the promise to myself, was the day I realized that being “old” or “older” doesn’t have to mean that I will look old, not be able to walk, be overweight, be in constant pain, take a bunch of pills or constantly tried… And the list could go on. The light-bulb went off in my head, because I realized that many of the reasons my grandmother and mom felt, their appearances, and the way they lived was because of choices that they were consistently making. They did not care enough to change them. Again, their choices, but I vowed at to make different choices and to shape my life differently.

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(From left to right – 5th grade, 8th grade & 12th grade)

Fast forward 25 years, through my EDS diagnosis and now knowing that the root problem that both my mother and Gram had was EDS, that plan I laid for myself at 11-years-old still remains as my life’s plan today and is the reason I have remained as healthy as I have; despite having EDS.

Many could say that I just do not have as severe of a case as my Gram or even my mom, but I disagree. The genetics in my family for EDS is obvious: I’m the one most like my Gram in so many ways! I seem to also have inherited the defective genes from my mother’s father’s side, as well as my own father’s side.

I’m like one big genetic defect on the inside, yet one of the most-fit – and dare I say “healthiest” — out of both sides of my family combined.

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(December 2002 – with my mom on my wedding day at 24 yrs old)

So, what’s the reason? I sure as heck don’t feel as healthy on the inside, as I may look on the outside most of the time. My conclusion? It’s because of my lifestyle choices, the promise that I made to myself years ago, and my personal belief in my ability to change the trajectory of my life’s path by the choices I make today.  Living with EDS

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(Top Left – 2013 Family wedding, Top Right & Bottom Left – Fall 2014 & Bottom Right – February 2015 Landing Crow Pose in Yoga)

Ultimately, the only concrete barriers we will for sure face in our lives are the ones we set for ourselves.  When living with EDS, you have remember that our minds are incredibly powerful and amazing things can happen when you not only believe in something, but also stop saying, “I will never …..”  Because if you always start with “I will never,” then you are solidifying your destiny before you even began.

 

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