My Promise
This year will be my 10th Trek. ALS is awful, there is nothing else to it. It’s awful and cruel. The hard part about being part of this community and the Trek is that each year you might meet new people, but each year there is also someone who is gone. This year is rough. A few years ago I met this amazing woman Rachel, I was Trek roommates with one of her friends and she was in the next room over. Rachel was in school, I was in PA school, we talked of our connections to ALS. Her grandmother, uncle, mother and brother died of ALS and she shared with me that she tested positive for the ALS gene mutation. Imagine knowing you were going to get a disease that would kill you? When I asked her why she tested she said she did it for her children. She was part of several studies at ALS TDI as an individual who had the mutation but was not yet diagnosed. She did this for her children knowing ALS had already taken too many from her family. The following year she was having symptoms and was diagnosed with ALS. Last year she graciously asked me to join her team. Team Often Awesome. I had been riding team-less for several years as my original team Greenwich police slowly dwindled and eventually was gone. She took me in. Not only did Rachel take me in but her ARMY of friends and family took me in. Her birthday fell on the Trek last year and we all celebrated. She wanted it to be quiet, but her friends wouldn’t allow it. We talked, we had fun, we took pictures, Rachel just wanted to have fun…….8 months later ALS took Rachel. Rachel passed away this past February. I was shocked, wait, no, we were to have more time. She was going to be at the Trek. She was “ok”. This year is going to be rough without her there but I know her ARMY, (and I mean it when I say ARMY these friends and family are ALL IN) will make sure she is remembered….and I am pretty sure she will be watching us. I typically post the picture of Arabella at Amanda’s grave. It’s a hard picture but it’s the reality for too many children out there. Loosing their parents to ALS way too young. Rachel has two children who now will live out many of their life milestones without their mother by their earthly side. As many of you know I do this ride every year as my promise to Amanda. 12 years ago I made a promise (and if you know me I do not make promises) to Amanda that as long as I was able I would ride or be some part of the Trek until there is a cure or treatment. I made the promise to Amanda but also for Arabella. Amanda lost her Grandmother and mother to ALS and carried the mutated gene. Amanda’s only wish was to know her daughter would be ok, that if she were to have this mutation that there would be an effective treatment or cure. This is what I can do, all I know to do. Amanda was a patient who quickly became a friend. We had hours and hours of conversations, despite the fact I never heard her voice, Amanda and I communicated via an eye gazing device. I came into her life as her homecare PT 1 week after she delivered Arabella. Amanda found out she had ALS and found out she was pregnant all within a two week time frame. Her ALS progressed quickly. By the time she delivered Arabella she was non-ambulatory and on a trach. All she had was head movement. She never got to hold her baby with her own voluntary movements, she never got to say I love you with her own voice. After a few months of being home she lost her ability to move her head, she could only move her eyes. In her last weeks, she was having a hard time even moving her eyes….she was losing her ability to communicate and that was very difficult for her. Yet she was always grateful for all the help and despite her limitations she was an amazing mother to Arabella. Amanda was amazing as is her husband Chris. The first time I walked into their home Amanda turned her head and mouthed “thank you for coming”, that just demonstrated the type of people Amanda and Chris were. They never showed bitterness, always gratefulness, always looking out for those that were coming into their home. I would leave that house and think to myself “whatever it is I am complaining about today, SHAME ON ME”. Amanda lived and died with such grace, I was and am still in awe, and hope that I continue to grab even some of that grace that she taught me. Amanda passed away at the age of 32, just shy of Arabella’s second birthday. I miss her, I really miss her. Her quote, “There is good in everything”, we should all take something from this quote. And then there is Andrea. We met years ago at the trek on those Adirondack chairs in the courtyard at the university of New Haven. She is such a warrior! She takes whatever life throws at her and shows the universe what she is going to do with it. She is strong, kind, grateful, thoughtful, and this girl has GRIT. First person with ALS to complete a marathon in all 50 states on her trike. She made a documentary “Go on, Be brave” and it is inspiring. Andrea YOU are inspiring. Rachel this year we are going to celebrate you. Amanda this ride will always be for you. And Andrea I can’t wait to see you! I ride for all with ALS. FUALS!!! I will continue to roll over every Ironman finish line in honor of you ALL. Any support for my ride is greatly appreciated. It is not lost on me that I have been doing this for 10 years (2 years lost to COVID) and I have had amazing support and some of the same families support me year after year. Truly I am so grateful. I despise asking for money, I really do, but this is part of my promise. ALS TDI supports ALS only research, the gains I have seen in my 12 years has been tremendous, but we need more. ALS is NOT incurable it is UNDERFUNDED. If you feel it in your heart to support me I am truly grateful. But please what I do ask is that you share this post, share this email. You never know who might need to see it, and what connections it could create. Thank you!
