Between Breaths

For the last couple of months, I’ve been helping a very dear friend organize a nonprofit fundraising event that will take place this weekend. HARK’s mission is to “share the real story of ALS and to provide a network of compassionate resources for families.” Through fundraising activities like this weekend’s event, HARK provides assistance to alleviate the financial burdens faced by families battling ALS, offering support in many ways including:

• Provide assistance with home modifications
• Purchased and donated a handicap accessible van to a pALS
• Purchasing equipment not covered by insurance
• Paying travel expenses for pALS to visit family or attend an important family event they would not otherwise be able to afford
• Visit communities across the country sharing Hope on the Horizon increasing awareness of ALS and benefitting a local ALS family
• Provide financial assistance for household expenses
• Assisting families with children during the holidays

Having heard me perform some of my poetry at an open mic night, Deb asked me if I’d consider writing something and performing it at the event. I said “yes” but felt a little overwhelmed and out of my depth. Like many people, I didn’t really know all that much about the disease, other than ALS brings emotional, physical, and financial challenges to families, as they must provide increasing levels of care and cope with the emotional toll of watching a loved one’s health decline.

I didn’t know where to start until I sat in on Deb being interviewed a local TV station on Monday, when the reported asked what had changed when her late brother got his diagnosis. As I listened to her answer, it took me back to when my own father was given 2 weeks to live and summarily transferred into hospice care (where, thanks to their dedicated level of care and support, he went on to live another two years), and this poem started to write itself before I even got home.

For me, it’s a meditation on those fragile moments when love, hope, and resilience emerge in the face of uncertainty. My hope is that each of you might find something in it that speaks to your heart, whatever that may be.