Columns

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…

Losing My Gaming Ability Opened Other Doors

There’s that old saying about how when one door closes, another opens. The original quote by Alexander Graham Bell is, “When one door closes another door opens, but we so often look so long and so regretfully upon the closed door, that we do not see the ones…

Learning to Live with Chronic Pain

It’s ironic. I’ve been sick my entire life, but only in the past few months have I really felt chronically ill. I’m slowly, if not reluctantly, coming to terms with the fact that my sinus issues are chronic. A round of antibiotics and a hot…

First Introductions and Awkward Handshakes

What is the first thing you do when introduced to someone? You start off with a simple greeting, state your name, and extend your hand for a firm handshake, right? I know I’m going out of my way to state the obvious here, but stick with me. This…

Inaccessibility Makes Life Difficult

It’s easy to forget how inaccessible the world is, especially when you’ve spent the last week and a half scrolling through social media feeds and catching up on sleep. Even when I was in Indiana, surrounded by people who were smarter than me, I found myself…

Fears, Friends, and Sound Advice

Today’s column is brought to you by the gratitude I hold in my heart for friends who give sound advice and are always willing to talk about the hard stuff. I think that’s a key ingredient to living with SMA: getting comfortable with talking about the things that…

Best Friends Forever

Ella loves her friends. She loves going to school each day just to see them. She raves on and on about how helpful they are and how funny they are. She’s a very social person. Just recently, we received an invitation to…