Heather

Face 1804

Hello there! I’m Heather Stewart. I am a board member of Walk AS One and team captain of Rockin’ Weebles: Weebles Kick A.S. for Walk Your A.S. Off, the annual walking campaign from Walk AS One.

My maternal grandfather had A.S. I never knew him when he didn’t have it. I could never understand why he couldn’t turn his head. I watched as his frame went from 6’3” to 5’6” due to the fused curvature of his spine. I also watched him continue to laugh, fish, camp, drive, and have a great time with his children and grandchildren.

I grew up very active. I was a state champion baton twirler, a champion dancer, played all kind of sports especially softball and volleyball and was part of a drum corps and the High School Marching Band. As a teen I started having pain, but no one knew why, and it was brushed off as “growing pains”. Through college the pain was considered an old injury from my various activities. When I went to graduate school I was thought to have chronic fatigue, cancer, blood clots, et cetera, and finally would have to leave school. They were wrong…

As my pain increased, and formerly easy tasks were now difficult, I tried to advocate for myself by making sure my doctors heard me say Ankylosing Spondylitis when asked about our family medical history. Doctors didn’t test for it nor would they believe it was possible because I am a person of color. Those of Native American/African American descent were said not to have Ankylosing Spondylitis. Years later, after a visit with the area rheumatologist (the very same one that treated my grandfather) I was given a diagnosis. I kept my rheumatologist on his toes presenting him with atypical symptoms and asking about trying different treatments. We had a great relationship. He has since retired.

Ten years ago I was told I would not be returning to work. Knowing that not working was best for me and agreeing to it are totally different things. It is a daily struggle.

I am differently-abled, searching for ways to channel my active mind – working with Walk AS One, singing with Dorothy Cotton Jubilee Singers, camping, reading, spending time with family, playing with my dogs and quilting. I have to keep moving. This year my current rheumatologist agreed that I need a service dog and I am currently training my 10 month old Great Dane puppy with assistance from a local trainer. I may not be doing things the way I want to or the way everyone else does, but I do it differently.
I am a Weeble after all, We wobble but we don’t fall down.


One Response to “Heather”

  1. Dear Heather,
    Thank you so much for being a part of my vision.
    Sincerely Cookie

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