I often write about my personal perspective of life, but today I want to introduce an incredible person to whom I have the privilege of being a big sister. Among the many students finishing up their final year of studies is my no longer little brother,…
Columns
There’s a brand new medication currently waiting for me on my kitchen counter. I see it every single day. I debate taking it. I chicken out. I’ve developed some health issues in recent weeks (thank you, stress) that prompted me to have my first telemedicine conference call with my team…
The Blue Typhoon
Here in the Midwest, “going for a drive” is an authentic thing. When the tall grass gleams in the golden hour of a lazy Sunday afternoon, countryside rustic roads beckon people to roll their windows down, ignite the engine, and explore. In our current times, the splendor of this activity…
May Baby, Special Delivery
I’m a May baby (actually, May senior citizen is a bit more accurate). I love having a May birthday. From wrapping up spring semesters before my birthday way back in college, to getting back to outdoor activities after winter confinement, and to my birthday falling on the heels of…
Ella Flourishes Despite SMA
Ella has not been out of the house for weeks. She spends much of her time doing schoolwork. Every morning, her teacher has a class meeting on Zoom. Ella tunes in to get the day’s lesson. When the meeting is over, she immediately gets…
Puzzles are all the rage these days. Since the onset of the COVID-19 pandemic, countless friends on my social media have turned to jigsaw puzzles as a newfound hobby. This particular pastime requires mental focus and time, and as such provides people with a welcome distraction from the…
Post-traumatic growth (PTG) occurs in the wake of adversity, initially through grief work — recognizing that our lives have fundamentally changed as a result of trauma — and eventually through self-reflection. Once we mourn the loss, we can cultivate positive psychological change, recognizing personal strengths…
Ella’s Got Talent
Ella is a social person. She loves developing relationships with others and is always up for a family night. She builds delicate yet sturdy friendships with people and navigates these relationships well beyond her years. Having SMA presents challenges. For many years, Ella watched her siblings…
SMA Humor Writes Itself
The comedian Brad Williams has a great one-liner about writing jokes. Williams’ observational humor is predominantly rooted in his experiences as a man born with achondroplasia, a type of dwarfism. When describing his writing process in the 2015…
Last week, I wrote that to properly address anxiety about the coronavirus, we must sit with our grief and accept it. But grief work is one step among many. Grief work is crucial and valid, but it also lends itself to forward…
Recent Posts
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
- There’s no place like home for the holidays
- Newborn screening for SMA boosts health, saves money: Study review
- Community is nonnegotiable for thriving with a rare disease
