“For the most part, my solutions to human problems have been simple ones—get more rest, do good work, take things a day at a time, and find some people to love.” –Mary Pipher, “Letters to a Young Therapist” It’s getting to be…
It’s hard losing abilities you’ve had all your life. Of course, that’s just part of having SMA. Once upon a time, I could sit up on my own. Now I can’t. Once upon a time, I could feed myself and lift my phone on my own.
It seems like everyone I know is getting married. People I went to high school with are updating their relationship status on Facebook to “engaged.” They change their last name and so the first few times they pop up on my news feed, it takes me…
I was nervous about “Hamilton.” For one thing, I’d listened to the original cast recording so many times I was worried I wouldn’t be able to enjoy the touring version. For another, I wouldn’t have my parents around if something went…
Classes started yesterday. My third semester of graduate school, which is a little weird to think about. It feels like I just started; like I just graduated with my bachelor’s in psychology. People kept asking me if I was ready to go back, and while part…
I’ve had a Spinraza consultation set up for a few months now, and was able to squeeze in a neurological evaluation during the appointment. The CT scan of my sinuses came back clean, and the ENT specialist suggested I see a neurologist about a…
When I first started writing this column, I wasn’t sure what to say. I have a list of potential topics that I’ve been adding to sporadically, but nothing really jumped out at me. You’re probably tired of hearing about my headaches. To be frank, I’m…
I’ve been putting this column off for a while. While I’m perfectly fine with sharing some things, I generally don’t like to talk about the people in my life. But this is something most, if not all, SMA patients deal with at some point, and I…
My head has been feeling pretty good lately, thanks to the humidifier I recently started using. So, today I walked into my ENT appointment pretty optimistic. The nurse was actually the same person who administers my allergy shots, so it was nice seeing a friendly face.
The first time one of my personal care assistants (PCAs) brought her daughter, I was kind of in awe. She was only a few months old at the time. She slept most of the day and could be trusted to lie on my bed, staring up…
