For the last few days I’ve felt un-motivated. Lethargic. Not depressed but not my usual self. Sure, we’re still in a pandemic. Sure, it’s going to be awhile before I can get the vaccine. Sure, it’s damp weather which is never good for my muscles.
But, I think the catalyst for this malaise was finding out that a member of my support group died last week. His wife let me know the day after he passed. He and I were never close but we did have a connection.
The first year of a longitudinal research study I participated in across the country in Rochester, New York, he also participated in. In fact, I discovered he changed his date of participation to coincide with my visit. At that time, it creeped me out. It was a two-night hospital stay with lots of diagnostic testing and a muscle biopsy. The last thing I was interested in was making a new friend.
He apparently never felt rebuffed and continued to seek my friendship in and out of the support group. In fact, he even photographed my wedding, in 2008, to my female partner. This may have been a stretch for him since I assumed him to be of a different political persuasion than myself. This was before 2011 when marriage equality was federally granted; hearts and minds still weren’t quite ready yet.
Over the years I met his wife, and adult children, and felt a kinship with him though in the last few years I had a difficult time understanding his speech and he wasn’t keen on communicating via email or Facebook. But, I considered him a friend. Occasionally, he’d ask me questions related to my experience with specific myotonic dystrophy (DM1) symptoms.
During the pandemic I started doing virtual support group meetings every two weeks. He never joined but I assumed he got his support from his family which now included a few grandchildren.
When his wife messaged me, I wasn’t surprised. I was sad but in the last few years I’ve seen many of my support group members — and larger international community of DM1 friends — pass away. Mostly due to respiratory complications. I’m somewhat numb to it.
Since this man wasn’t much older than myself, I can’t help but experience his loss partially as a nail in my coffin. I responded to his wife with an appropriate response but I had to make sure she knew about the BioBank at our local research university. I know this was of great solace for other families when they lost their loved one so I have to assume others may find it useful.
And so, life goes on. Days pass and I feel more alive than having one foot deep six.
I’m so sorry to hear, it’s certainly a hard topic, especially when they are suffering the same way you are. Thank you for sharing and I hope you are ok! ?
Leslie, you’re a warrior and beautiful ♥ human being! The way you cope and express yourself has always held my admiration and love for you! Please accept my condolences and prayers! I need to #dobetter and stay in contact with you! I am trying to hook up a fellow high class mate with you that’s in CA. I will message you privately.