Thanksgiving has always been one of the most important annual dates for our family. Since Roz and I first celebrated with graduate school friends as newlyweds 47 years ago, the fourth Thursday in November has meant big gatherings of family and friends steeped in lots of love and food. For the past few years it has meant days of cooking and months of debate about the menu. But always lots of love.
This year has been special – if bittersweet. My favorite grandson Spencer joined Simon and Irina as a full-fledged member of the cooking crew, and has more than carried his weight. It’s a good thing we now have his hands because mine are much less useful – no more heavy chopping or slicing for me. And I cannot even bark out directions as I have in the past – instead I scurry around the kitchen with my pad and pen offering written suggestions. Or send gesture and sign messages that Spencer has become quite adept at translating.
But it all smelled sooooo good.
Of course, except for a few sips of Spencer’s sweet potato soup, smell is about all I was able to do with food yesterday. But I was able to give and accept many hugs from our twenty guests – family and close friends. It was a wonderful occasion – full of love and laughter and good feelings.
It’s hard to write about how I felt about yesterday. One the one hand it was great to see everyone, and especially rewarding to have Spencer cooking with us and sharing bad jokes the whole time. But it was hard to not be able to be a full participant. After a whole life being in the thick of things it is especially hard to engage in a loud setting with many people around. I can do ok one-on-one with my pad and pencil or iPad voice, but groups are too fast moving, loud and multi-voiced for me to become comfortable. So I find myself hanging back and feeling like an outsider.
I was once quite able to just get in the middle of large conversations. I understand that my friends and family now would pause and be tolerant of my communication deficits. And the scariest piece of this for me is realizing that I am close to losing the limited communication ability I still retain. Pretty soon I will no longer be able to hold a pencil or type out messages – although I am meeting with the rehab folks this week to explore new technologies I might be able to use.
And that feeling may be the most destructive aspect of my ALS, even more than difficulties walking or using my hands. I realize it is in large part self-imposed, but as I withdraw I am finding I have less to say or share. It’s all just so hard these days when it used to be effortless.