Breathe in… I’ve been plagued with a terrible sense of urgency lately. The past few days have found me in marathon writing sessions, desperate to get it all down, to get it all out. So here I am in my 40th hour of consciousness, drinking chilled pinot grigio and ruminating over this post that I’ve… Continue reading Ruminations on the Nature of Things
Friday night was ALS ONE's 7th annual Snow Ball. It was so great to be able to gather in person and see so many friends after the long isolation of Covid. The evening, as always, was informative, emotional, and inspirational. Lots of laughter, a few tears, and a fair amount of wine. We celebrated the… Continue reading 2022 ALS ONE GALA
Last night was amazing! Aaron, Bender, Deb, and I headed to the Cape for dinner and then onto the Cape Cod Melody Tent for the Air Supply concert. After the anguish of the previous week, I was sincerely doubting my ability to enjoy a concert, even one that I had looked forward to for so… Continue reading Lost in Love
Aaron, Jack, and I were honored to help represent ALS One at the Red Sox ALS Awareness Game last night. We joined four ALS organizations, 25 families affected by the disease, Mass. Governor Charlie Baker, and Dr. Merit Cudkowicz of the Healey Center for ALS at MGH, among others during the pregame ceremony. As a… Continue reading RED SOX ALS Awareness Game
It was so great to get down to Marshfield yesterday for ALS One's annual polar plunge! After more than a year of lockdown and COVID restrictions and isolation, people were so ready for this. It was freeeeezing cold, but so awesome to see everyone and cheer on those who braved the frigid waters of the… Continue reading ALS One Polar Plunge 2021
It has taken me over a week to fully recover from the epic time that was had here at Casa de Strojny over the weekend of the 19th-21st. That had promised to be a great weekend anyway because Nancy Lee Grahn was hosting a Zoom fundraiser for ALS One, which I was super excited about.… Continue reading Epic Weekend
Back in the early-ish days of the pandemic, a pretty cool thing happened in the midst of the craziness. Because everything in the world was basically shut down, people got all inventive in terms of connecting with their fellow humans. Zoom calls became the norm. For me, Friday nights became Friends and Family Fridays. It… Continue reading General Hospital Stars Zoom for ALS
I haven't physically been to clinic at Mass General in a year, thanks to COVID. Last April and July I had virtual visits with Dr. Berry via Zoom. In September and December a nurse from the ALS House Call program came out to the house for an in-person visit. She came out for her third… Continue reading ALS House Call Visit
I awoke from a fitful sleep sometime after 6:00 tonight and went outside for the first time in days. The cold was surprising and there was an ache in my lungs as I inhaled the painfully fresh air. I squinted hard against the sun, which was still high in the sky, though descending quickly, preparing… Continue reading At Play in the Fields of the Bored
I don't dwell on abilities I once had that I no longer have thanks to ALS. But there are certainly times I mourn the loss of things I was once able to do with ease that I've now lost. One of the things I miss most in the world is practicing Martial Arts. I walked… Continue reading The One with All the Karate
Rise Against ALS! 