My Uncle Paul liked to tinker. He built the bed I sleep on; the shed we store our lawn mower in; the basement my friends and I had sleepovers in; the swing set that has survived 17 New England winters and yet remains standing in my back yard. He was an independent and active person- proud of all that his body was able to accomplish. For that reason, he liked to hike mountains, watch birds, paint houses, coach soccer. If he had a moment of spare time, you’d find him correcting math homework on the dining room table or listening to country music in his workshop, intent on finishing some household project.
When he was diagnosed with Lou Gehrig’s disease, it was as if life chose to challenge every aspect of his being- taking a strike at his physical body but also his intrinsic nature. There were small clues before he was diagnosed- no matter how much he tried to hide the pain he was suffering. In his annual hike with my cousin Erin, he pushed himself to the limit, but had to step aside during the final stretch to reach the summit. He didn’t let us know it bothered him because, perhaps at that moment, it didn't. Perhaps he began to see something beyond his life accomplishments in the steps of his daughter, my cousin. As he watched us continue to hike, he smiled and waved; content with the nature that presented himself where he stood.
ALS became the biggest battle of my uncle and his family’s life. Although we cherish the beauty in his life, nothing about his death was easy or heroic. In the span of mere months, my uncle’s body slowly betrayed him. And, while he continued to put a gentle smile on his face, kissing our hands and asking about our lives, he was forced to suffer through a disease nobody should be subjected to. Of course, he handled it with the most beautiful grace I could imagine. He learned to let others help him, comfort him, love him. And, in turn, he loved us back with the growing force of some intangible, transcendent might. While he couldn’t control ALS as it took over his body, he controlled the way it shaped his perspective and mindset, remaining the ever-loving Uncle he was both before and after he was diagnosed.
The thing about Lou Gehrig’s Disease is that there is no treatment. There is no cure. Additionally, it remains an orphaned disease- as the short lifespan of its patients keeps the disease prevalence low. So, this is where my involvement in the Falmouth Road Race comes in. This is where your involvement comes in. What can you do to help? You can share my uncle's name and story. You can let people know that there are faces behind the Ice Bucket Challenge that kept reappearing on your Facebook feed last year. You can volunteer, participate, donate, and raise a general awareness about the need for continual research regarding ALS. But, more importantly, you can celebrate and cherish all that you have around you- your family, friends, health, and all of that potential bundled up in your future.
CCALS, in particular, works with the families and individuals affected by ALS. It's a non-profit organization that focuses on caregiving and it personally helped my Uncle Paul and his family during pretty tough times. Of course guidance and awareness is crucial, but CCALS also hopes to address ALS on the micro-scale by tangibly and emotionally assisting those diagnosed with ALS. So, in hopes of continuing the support and love towards these individuals and families, the Castelline Crew is running in support of CCALS!
So please considering donating to this page as I participate in this event to raise funds for Compassionate Care ALS. Raising funds from the Falmouth Road Race will allow CCALS to continue to provide direct services and durable goods to ALS patients, their families, and their caregivers. Please give generously and assist us in making a difference in the lives of those affected by ALS.