Columns

The Day I Was Reminded of SMA’s Unpredictability

Can I get a show of hands of all the folks who agree that living with SMA can be incredibly unpredictable? OK, maybe that wasn’t the best way to take a poll. However, I imagine you’re nodding your head in agreement. You probably raised your eyebrows when you thought…

Coming to Terms with My Spinraza Setbacks

My Spinraza journey has been a roller coaster ride so far, filled with joyous highs and gut-wrenching lows. I am a person who likes to make a decision and stand (or sit) by it. But with Spinraza (nusinersen), I have found it impossible to make an ultimate decision.

Ella Had a Lovely Time at MDA Camp

Ella and I sat at Dunkin’ Donuts, conversing about MDA Camp. (MDA is the Muscular Dystrophy Association.) She thoroughly enjoyed camp for all the wonderful activities she did, and especially for the people she became friends with. The camp wasn’t all peaches and…

Finding the Balance Between Realism and Optimism

My oldest cousin is getting married this weekend, and my youngest cousin is engaged. Two of my best friends are in long-term, committed relationships and talking about marriage. I turned 23 recently. All in all, I don’t feel any older, but I do feel more prone…

Think Before You Stare

There’s a paperweight that sits on my desk that reads, “People are going to stare. Make it worth their while.” Apparently, a man named Harry Winston stated this. I did a quick internet search of the fella, and it appears he was a well-known American jeweler in…

Always Have a Backup

Always have a backup. For the first time in her life, Ella is attending Muscular Dystrophy Association (MDA) Summer Camp. We had prepared for this adventure for weeks, reassuring her that she’ll be all right without her parents (for the first time in…