A Veteran Talks
“Hey kid, the good days will always outnumber the bad,” he said to me with a kind smile and wink. We were sitting side by side in the infusion center at Massachusetts General Hospital receiving therapy back in early 2002. Bill and I were on the same treatment rotation and had become friends. He had been front and center during the Cuban missile crisis in the Navy. I was currently on active duty as a Navy Nurse in CT. He was receiving the treatment appropriate for his neuro muscular condition. I was receiving it on the slim chance it would help, since one of my lab values was unusual when all other evidence pointed directly to the inescapable ALS. I was 26 years old, scared about the future, sitting next to my fellow veteran, and found his words were of great comfort to me.
Eighteen years later, I find that the good days have always outnumbered the bad and I suspect it will continue to be this way. The bad days have included the shattered dream of having children of my own as my siblings and friends continued “normal life.” The bad days also included the end of a young marriage in a bitter divorce. But, as you know, ALS is relentless in breaking bodies and hearts.
Today, we all find ourselves in unprecedented, turbulent times. This can be very unnerving, especially, when combined with ALS. My partner and I went into strict isolation in mid-March and spent three months together 24/7 as he was my only caregiver. We struggled through the social isolation, my guilt about depending completely on him and figured out how to settle into a new type of lifestyle. Our days now have a simpler rhythm. Watching flowers blossom is a big treat! The garage is not for my van anymore. It is set up for socializing with neighbors and family at a safe distance complete with a screen tent, carpet, lawn chairs and flower pots to line the entrance!
During these turbulent, changing times, I have some good news to share. My partner, Leif, and I got engaged a few weeks ago and are planning a very small ceremony October 3rd! WHAT?? Who marries a 44 year old woman who has ALS? Evidently, Leif does. We have been living together for eight years and he figured if we could be together 24/7 for three months and still like each other, we might as well give marriage a shot.
I pray that as we all find new paths forward, excavating our former lives, positive things will surface. I am pleased to learn that ALS clinical trials have used the past few months to pivot how trials are run. They are now maximizing the use of video appointments to gather information and reduce in person visits. The field has also shifted to investigating breathing measurements that can be taken at home and doing safety labs locally. These changes bring the possibility of including more people in ALS trials by reducing some of the barriers.
We will all continue to have bad days. Life is just like that. My wish for you is that your good days always outnumber the bad. Keep your heads up and seek out the positive.
Sending my love from NH,