When Mary was diagnosed, I didn’t realize I was already connected to people around the country who had been impacted by ALS. It turned out I knew four people who had lost a parent to ALS, and another who had lost a good friend. I soon met many more people whose lives were impacted by ALS: PALS, parents, children, spouses, friends, cousins… all of us forever changed by this horrible disease.
According to the ALS Association, ALS (also known as Motor Neuron Disease) typically strikes between the ages of 40 and 70, although it can strike at any age. At any one time, more than 20,000 people in the US are living with ALS. It is estimated that someone is diagnosed with ALS every 90 minutes. And every 90 minutes, someone with ALS dies.
Since becoming an unwilling member of the ALS community, I have become friends with people in the community around the world, some of whom I now count among my best friends. I have shared the journey with them from diagnosis to death, seeing more of both than I ever expected to. There is a unique connection that we share, unique and tragic. Every new diagnosis is the diagnosis of someone in my family; every death is that of a family member.
I help to moderate a Facebook group for spouse caregivers, and two and a half years after the group was founded, we are adding anywhere from two to ten new members a week. The journey of a spouse caregiver is unique, as we try to balance the role of caregiver and spouse/significant other.
There are decisions to make, tears and laughter to share, knowledge and experience to impart on those who have not yet walked the entire journey. That support group was my haven, my support system, while Mary lived her ALS journey.
Two months after Mary died, I founded a Facebook group for ALS Widows and Widowers. We support each other starting with the day of loss and moving through the years as we try to re-create who we are now, newly alone, grieving, reliving the impact of ALS on our lives every time there is another diagnosis or death. Yes, life goes on, but in a much different way after what we have experienced. We say that “ALS is the gift that keeps on giving” – that the devastation does not end when our loved one dies. In many ways, after the loss, we just begin to realize what we have lived through over the previous few months and years.
I honor all of those who are fighting ALS, the PALS and CALS, the researchers and non-profits, the medical personnel, the therapists, family members…. we need you. For those of you who have experienced ALS and are grieving a loved one, you are not alone. There are in person and online support groups for you. For information on those, PM me or leave a comment below.