School is out in my area, and summer has officially started! Living with SMA means that my independence is made possible through a network of practical, daily support from friends in my community, and caregiving is woven into nearly every part of my life. My volunteer caregiving schedule…
Caring Together - a Column by Connie Chandler
Like most humans in the world, I do not like to cry in front of other people. My life with SMA does not allow me a lot of grace to conceal my physical weaknesses and vulnerabilities. It is obvious to any random stranger that I cannot walk, and…
My aunt, who doesn’t throw anything away, recently sent me an artifact from my childhood: a pink paper pamphlet titled “Meet Connie.” I was diagnosed with SMA type 2 when I was 18 months old and started using a power wheelchair when I was in first grade. Around the…
Caregivers are an essential aspect of my life with SMA, because I need assistance to do most of my activities of daily living. But I am learning more and more that caregiving is a strange mix of the deeply practical and the deeply personal — it’s as much…
I’m not one to turn down a compliment, but as a woman living with spinal muscular atrophy (SMA), I do not consider physical balance to be among my strongest skills. So, when my friend told me as we rode in the car one day that my balance was really…
There are many disabilities out there that significantly affect people’s lives but are not immediately noticeable to the general public. That is not the case with spinal muscular atrophy (SMA). As an adult living with SMA type 2, I know I have a few visible, physical indicators of…
I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable question. I’m not someone who loves how-to articles or self-help books, because I…
In my life with SMA, my favorite thing to talk and write about is my caregiver community. They are truly exceptional and amazing people who faithfully show up, step up when my needs change, and courageously do hard and messy things to help me live well. I am…
I was diagnosed with spinal muscular atrophy (SMA) in the mid-1980s at 18 months old. At the time, doctors explained to my parents that, because it is a genetic disease, there was a chance that they would have other children with SMA. Research shows that there is a 25%…
A sick feeling sank like a rock in my stomach. My wheelchair would not fit in the airplane cargo hold, the airline employee told me. My only options were to refund our tickets or reroute us through another airline. My caregiver and I sat there, surrounded by our carry-on bags…
