Written by CCALS client, Eric
I lift my eyes to the hills. From where does my help come?
The quote above comes from Psalm 121 and it is a question I would guess most of us ask at one time or another during our lives.
I was diagnosed with ALS in June 2023 and certainly thought about this. Where indeed would my help come from?
I am fortunate to have a close loving family and a wide network of friends and access to top quality medical care and, in the aftermath of diagnosis, I felt loving care from them all. And yet, the constraints and progressive nature of the disease left me sad and shaken. I can honestly say that I could not muster feelings of hope.
Then, about a year in, help came to me in an unexpected way.
At the recommendation of friends who had watched their family members go through ALS, we reached out to CCALS. We got a message that Ron wanted to come visit with us. Sure, we thought, why not?
Well, we spent about two hours on our back porch talking and getting to know each other and learning about CCALS. I felt heard. My wife felt heard. At the end of our talk, Ron asked if there was anything in particular we were looking for. My wife asked what she thought was a random question: did Ron know anything about a bike that would be good for me. My strength and balance were both compromised and I missed being able to ride my bike on the cape cod rail trail. Ron made a quick call. As it happened someone had just donated a recumbent electric tricycle to CCALS..”We’ll have it to you in a couple of days,” Ron said. Just like that. And two days later, there it was and I was on the trail.
From where does my help come indeed.
Having that bike restored a part of me that I thought I had to give up. And I think that is the essence of CCALS– that it provides you with the tools that can enable you to live a life of meaning and fulfillment. CCALS, together with my medical team, gave me the impetus to stay alive. CCALS helps you to BE alive. They help enable you to be your full self living your life in the moment. That is where I am now. I am in a place that is better and happier than it was last year at this time, even with the progression of the disease.
In the months since the arrival of the bike CCALS has also provided a folding electric wheelchair enabling me to navigate airports and be part of a family celebration out of town. Then there was the technical help with my Tobii Dynavox for communication, and the gift of a gadget to help with my feeding tube, and…
But perhaps even more than the tangibles that they have provided, CCALS is about people. People who talk to you and listen to you. People who know how to use the quiet – those times when words don’t come. It’s about people who come together, whether in person or by Zoom, to share, support, acknowledge, providing the oh, so important message: You are not alone.
People who,by reaching out to you enable you to reach deep into yourself, helping to draw on your inner resolve.
Their work isn’t limited to the patient. They provide support and resources to the caregiver(s) as well. In my case my caregiver is my wife,Fredda, who has benefited from a range of in person and online interactions with CCALS. She has also found a way to give back to CCALS, offering her experience as rabbi and chaplain.
From where does my help come?
I know I am blessed and the answer is from a variety of sources. But I can truly say that CCALS has changed my life—and by extension my family’s. We are happy and proud to be both beneficiaries and supporters of the work of this amazing community of professionals and volunteers.