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My neurologist presses his stethoscope to my chest. He’s performing a routine checkup; it’s a mere formality, really, so I can be sent home with my prescription for gabapentin refilled. It’s over as soon as I breathe in and out and he has…

You already know that for the longest time, I didn’t want friends with SMA. I was young and desperate to be seen as “cool” (whatever that means), but more than that, I was dumb. I thought that being seen with “people like me” would ruin my street cred —…

As Rare Disease Day approaches on Feb. 28, many in the disability community are seizing the opportunity to share about their diseases and the many aspects of being rare. Having an entire day dedicated to this purpose is wonderful, but let’s not limit these discussions to…

These days, I’ve been soaking up all the true crime content I can set my eyes and ears on. Documentaries, podcasts, “Dateline” episodes that I now look forward to every Friday night — I’ve become engrossed in real-life stories about missing persons and murders. More specifically, I have become hooked…

I’ve done it yet again.  I’ve fallen in love at first sight. (Would you expect anything less of an Aquarius?) I’ve been searching for a new bedroom vanity that better suits my physical needs during my morning and evening routines. Finding new, functional furniture can be a…

To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you have a rare disease. I’m rare because I have a huge wheelchair and tracheostomy, but that doesn’t mean I’m…

As my husband, Randy, and I slipped into our mid 40s, God plopped a little surprise into our middle-aged laps: a pregnancy. Totally unprepared in all ways for a baby, we scrambled with preparations until we were dizzy. Our son, Matthew, who was 10 at the time, was mortified with…

You know it’s a unique relationship when one friend helps the other use the bathroom. This is the scenario I found myself in a couple weeks ago when my longtime friend Lucas held my urinal for me inside the bathroom of our go-to comic shop. While I normally…

We all know that I hate getting up early. Just like I hate adjusting to a new wheelchair — I’ll do it if I have to, but that doesn’t mean I won’t complain about it. So you can imagine my dismay when my caregiver sent me the most dreaded…

I was once a rare traveler wandering the countryside. On my shoulders, I carried a basket of artifacts and relics. Each piece correlated to moments in my life when I’ve felt something within my heart — things both small or grand, benevolent or wicked — falling deep and deliberate like…