Thanksgiving & Difficulty Swallowing
So, the fourth Thursday of every November in the US is Thanksgiving. For our international friends, it is a national holiday centered around giving thanks for any blessings experienced during the year.
The celebration normally centers around a very large meal hopefully celebrated with family and/or friends, with the centerpiece of the meal usually a turkey and the side dishes varying.
Eating challenges on Thanksgiving
This particular Thanksgiving was especially hard for me due to two factors. The primary factor providing difficulty is that my doctors have strongly recommended I do not take food by mouth.
I do not swallow well at this stage of my progression, which puts me at high risk for pneumonia due to food aspiration. With most holidays, there is some other central event.
Christmas has gifts. Independence Day has fireworks. Halloween has children in costumes.
With other holidays, I attend the central event and if my family is doing a meal as well, I just skip it. My family understands.
Should I skip the meal or spend time with loved ones?
Thanksgiving provides a decision for me. Do I skip the central event entirely and be lonely? Or do I attend the meal and watch people eat food I would love to enjoy but cannot while spending time with loved ones?
I have always decided to attend Thanksgiving. From my perspective, being lonely on a holiday is worse than watching people eat delicious food.
After all, isn't that all cooking shows are? Watching people eat delicious food that you probably can't? FYI...I watch cooking shows when extremely bored, but I find them entertaining.
Little to talk about due to social distancing
For the past two years, I have tried to lessen the feeling of being left out by actively participating in the conversation. FYI... My last Thanksgiving with food by mouth was in 2018.
With COVID and social distancing this year, I had very little to talk about other than work, which I do not enjoy after hours. So I had very little to say.
Normally, I am that guy throwing out witty retorts, sarcastic comments, and dad jokes. Love me or hate me for this trait, any response only makes me want to give you more.
My only weakness is stone-cold silence with zero reaction. No eye roll. Nothing to indicate what you think of my humor. And that only works after prolonged exposure.
On Thanksgiving Day I had nothing. This is unusual for me and normally an indicator of something wrong with me for those that care for me.
I blame the soon-to-be two years of social distancing for affecting me. This was the second factor making this year more difficult than normal.
Sentiments from family members that they feel sorry for me
Two members of my family did acknowledge they felt sorry for me. I am somewhat torn on this reaction from them.
I appreciate them expressing the sentiment. It shows love and caring from the family which makes me happy and was the intent it was given.
However, I have a hard time with people feeling sorry for me. It creates barriers to them knowing me as an individual and not someone in a wheelchair.
Unwelcomed pity from others
I also get enough pity in public that I could do without. Growing up with this disease and seeing progression in others, I knew this day was coming, in all likelihood.
While I do hope a treatment will eventually allow me to take food by mouth, I have accepted my condition. I would have preferred a simple and heartfelt thank you for coming.
How does everyone deal with events you should attend but cannot participate in?
Do you have unanswered questions about SMA treatment options?