Almost every aspect of my life with SMA comes with a risk factor. Whether I’m traveling out of town or going to a movie with friends in the wintertime, I’m putting my already compromised immune and respiratory systems at risk. My health has improved significantly in recent years,…
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For many years, I’ve been involved in a fantastic local organization called Turnstone that serves the disabled community with a variety of services. I’ve been blessed to benefit from Turnstone’s services since I was 3, both as a client in therapy and in other programs. In recent years, I have…
Another day, another opportunity to go through a box of tissues to wipe the drainage coming out of my ears. Is that how the saying goes? That may have come across a bit grotesque, but unfortunately, it is my current reality. In my last column, I…
I’ve come down with a fever. As I sit on my outdoor patio, the tall angle of late February sun kisses my cheeks and warms my bones. From one bare tree branch to another, chickadees chatter amid treetop frolic. Surrounding me along all borders of the patio is a…
It’s daylight saving time and we have given back the extra hour we snagged in the fall. I don’t like giving time back. Usually. Ahhh … time. It’s a given that when you’re having fun, time whizzes by. My six weeks studying in Europe after high school?…
Warm weather in Chicagoland is slowly but surely creeping in. Temperatures on some days allow kids sporting short-sleeved shirts to play outside. Ella’s older brother, Henry, recently took advantage of a warm Saturday afternoon. He found his basketball and pumped it up. We have a regulation-sized…
I spend the majority of my time in my power wheelchair. Other than my weekly water therapy sessions, I’m usually in my chair from when I get up in the morning to when I go to bed at night. My…
At 9 years old, Ella is at the age in which she has become more concerned with her looks. And by the way, she has a crush on a boy at school! When her brother, Henry, came home last week with highlights in his hair,…
The music of Bruce Springsteen, David Bowie, and a bunch of movie soundtracks regularly play in the background of my home office. Thanks to Amazon Alexa technology, I can easily control my music and podcasts with simple voice commands. I always like to listen to…
Recently, I learned that zebras are the official symbol of rare diseases. I have a rare disease, and my unique characteristics — such as a zebra’s stripes — serve a distinct purpose in my life. But when I think of zebras, I think of one brilliant doctor, whose comical bedside…
