I often write about the caregivers who help me live a full and meaningful life with spinal muscular atrophy (SMA), and it is the primary theme of this column. Since I’ve lived most of my adult life away from home, I usually focus on the many wonderful friends in…
Caring Together - a Column by Connie Chandler
As the days get shorter and the temperatures get cooler, I find my thoughts turning toward Halloween costumes. As someone living with spinal muscular atrophy (SMA), I especially appreciate the imagination a costume can bring to a body and a wheelchair. Forget the excessive sugar-rush candy and the tacky…
Like every human being, I am complex. Living with a rare genetic disability like spinal muscular atrophy (SMA) adds another layer to that complexity. Labels like “female,” “disabled,” and “nerd” cannot capture the whole of who I am — my stories and relationships, my joys and sorrows, hopes and…
“Are you ready?” My caregiving friend stands beside my bed, poised to uncover me in the morning. I utter a very unladylike groan and clutch the edge of the warm blanket that is tucked under my chin. No, I’m not ready! The days are growing shorter and colder; the sun…
John Muir once wrote, “The mountains are calling, and I must go.” Every once in a while, that quote resonates in my heart. I am a Carolina girl who grew up in the foothills of the Great Smoky Mountains, along the rim of the Blue Ridge Parkway, and I somehow…
“Alexa, turn off the alarm.” “OK. Good morning, Connie. Would you like to hear an inspirational quote?” “Sure, Alexa. Go for it.” “All right. ‘There is no elevator to success. You have to take the stairs.'” “But Alexa, I’m in a wheelchair.” “I cannot help you with that.” As a…
Someone recently suggested that I write about my school days and what it was like growing up with spinal muscular atrophy (SMA). My initial reaction was to scrunch up my face and shrug, because my experience in school felt very normal to me, nothing especially remarkable or strange about…
A caregiver recently told me that the more she spends time helping me, the more she learns what I care most about. This longtime friend already knows that I care about faith, relationships, stories, advocacy, and sunshine, so what she was referring to are the tasks I need done because…
Because I live with spinal muscular atrophy (SMA), I have used a power wheelchair for most of my life. As far as I can recall, I have had seven different chairs, each one unique in its level of comfort, durability, and advanced functions. I’ve always had a complicated…
I have a really special and pretty large friendship caregiving team, which I write about a lot in this column. Because I live with SMA, I need plenty of help, and I am grateful for all the wonderful friends who do so much. Mostly, my caregivers are…
