From the List Of ALS Ironies
It’s hard to decide what’s more difficult: My own coming to grips with the ALS diagnosis, or the process of breaking the news for the first time to all of my family, friends, coworkers, etc.
There is absolutely no way to sugar-coat this. It’s no easier telling an acquaintance than it is a close friend, or a sister. It’s emotionally taxing to repeat the story of my symptoms and diagnosis over and over. It just seems to keep the wound inflamed and throbbing.
Additionally, nearly every single person, in response to me telling them the news, says something like:
If there’s anything at all that I can help with, please let me know!
In response, I end up straining a facial expression, an uncomfortable mix of a smile and a grimace, and I think:
I feel so fortunate to have so many friends and so many offers of support, but please God, send me a project manager!
An embarrassment of riches is not something to complain about, and I would surely be in a decrepit state without my beloved network of family and friends. But, it would be dishonest of me to gloss over the unintended ironic consequences of an initial, benevolent wave of support. It was overwhelming. It takes actual thinking and effort to convert all of these offers of support into actual helpful actions. There are phone calls and emails and text messages to deal with, logistics to work out, decisions to be made; basically way more than anything I felt capable of taking on.
Fortunately, the overwhelm passed and was replaced by feeling deeply loved and taken care of. The offers did indeed become actions, many of them. I’m moved beyond measure by the many gifts of time and effort given. Additionally, with every passing day, it became clearer and clearer to me how vital the support was for my partner in sickness and health, who had the title primary caregiver suddenly thrust upon her.
We’ve been helped in ways too numerous to ensure a complete list that recognizes everyone, so here are some highlights:
A group of my guy friends secretly organized and offered to commit one night a week to helping out with one thing or another: made dump runs for remodel waste and trips to Goodwill for a sizeable thinning out of belongings (both of which first required fixing a flat tire on our trailer), chopped kindling, chipped in and booked/paid a carpenter they knew for some finish wood projects that were still undone from the remodel, and more~
Another got the gutters installed on the living room expansion we did~
Still another hung curtains and installed a chandelier~
Three friends and my sister accompanied me to Los Angeles on four separate clinical trial visits, providing physical assistance and companionship~
An RV was borrowed and a handicap camping spot was booked for the 3-day Summer Meltdown music festival. (Sadly, I was unable to attend, but the gesture was very kind and appreciated.)~
Tickets were bought for a wheelchair accessible section to see Ben Folds and Cake in Marymoor Park: my friend drove to Vashon Island where I was having a solo writing retreat, picked me up, pushed me around at the concert, drove me back to the island, stayed the night, and drove home~
An electric wall heater was installed for us, and when we realized a couple of days later that we’d bought the wrong heater, it was uninstalled and swapped out for the correct one~
After many years of helping me make the latkes for our annual Hanukkah dinner party, our dear friend took on the entire task~
Her husband, simply and nourishingly, came over to hangout and chat with me periodically~
Our naturopathic doctor friend freely offered essential love and care at a time when no other provider had a clue~
And finally, a particular friend helped with cooking, errands, a million other things, and most notably, heroically battled an insurance company and a provider to get an urgent need met in 24 hours.