Damar Smith – Focused On What I Can Do
Damar Smith has learned a lot from caring for her sister and living with a disability herself. She chooses to focus on what she can do over what she cannot.
Damar Smith has learned a lot from caring for her sister and living with a disability herself. She chooses to focus on what she can do over what she cannot.
My diagnosis was not a surprise because this illness runs on my father’s side of the family. All of my dad’s siblings are living with SCA 2 in their 70’s. I had issues with balance and walking in high heels. I was diagnosed with Spinocerebellar Ataxia Type 2 at the age of 28. She received this diagnosis in kindergarten because of her inability to kick a kickball and illegible handwriting. She was able to graduate high school with a cane but her illness quickly progressed to a wheelchair in her 20’s. My mother and I became my sister’s full-time caregivers and she passed away at the age of 26.
Before my diagnosis, I earned a Bachelor’s degree in Social Work and worked at a home for at-risk youth. My hobbies included participating in the Color Guard in high school, Black Student Union, and hanging out with friends. These days my hobbies are limited to cooking and baking, walking my dog to the dog park, online bible study, and hanging out with friends or family. I also am active in Chair Yoga for Silver Seniors, church services, and attending Annual Ataxia Conferences whenever possible. Also, I am involved with several Ataxia Support Groups on Facebook.
Living with a disability has taught me many unexpected lessons, some positive, some negative. Surprisingly, in the day and age of technology, many places are not handicap accessible, like my apartment complex and elevator access in department stores. Without these accommodations, moving through department stores, your neighborhood, office buildings, or airports can be challenging for the disabled. On the positive side, people are a lot nicer and helpful to my disability than I thought they’d be. But, ultimately the greatest lessons are those that I’ve learned about myself. One, my safety is always first. Learning to take my time has been key to being safe from falls. Second, I am learning to love and accept myself in this new normal. Accepting my limitations and my unique abilities has been a daily challenge. Focusing on what I can do, instead of what I can’t is the ultimate act of self-love.
Bringing Ataxia awareness to my family and friends has been important. Educating oneself about this illness has not been a top priority to those in my family affected with SCA2. My father’s siblings, except for my uncle, are “more set in their ways” and have “surrendered” to Ataxia. I make it a point to see my Ataxia specialist consistently and learn all I can. I pass this information on to family and friends.
Thank you, Damar Smith, for telling us your story and sharing your greatest lessons with us.
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