Skip to content
Living With HIBM
  • How You Can Help
  • About Me
  • Home

Thank you

  • November 27, 2015November 18, 2017

I was going to post yesterday, but I chickened out. I was going post about how, for someone who feels in touch with gratitude on a regular basis,  it was disappointing to not feel it to the degree I normally do on Thanksgiving.  Thanksgiving is like my gratitude Superbowl. It’s when we are all so in touch with all the ways in which we are blessed.  But I haven’t been feeling as grateful in this past month.  It sounds so taboo. I guess it’s not that I haven’t been feeling grateful,  it’s just that it’s been harder counteract all that I’m not  grateful for. And yesterday,  I didn’t want to be a buzzkill. Or even offend anyone. So today,  I wanted to share. I wanted to tell you about some experiences that have felt hard in this last month. And where I have ultimately found the gratitude.

In October, my husband and I got away to Portland for the weekend. It was so great, except for the sad realization, once and for all, that I can’t really explore a new city on foot the way I used to, the way I wish I could.  Even stepping up onto a curb has proven to be a challenge. While we were there, on that Saturday night, we waited in the hour-long line in the drizzling rain at a famous ice cream shop. We were having so much fun, except for when I walked out of line to go to the bathroom, slipped and fell, had a crowd gather around me, heard a bystander so sympathetically say, “oh no, she has a cane” and somehow ended up getting helped up by a police officer.

A couple of weeks ago, I attended an annual psychopharmacology conference at the Skirball. It’s always a wonderful opportunity to see old friends from residency, but this time, it was also an unwelcome opportunity to see how much I’ve progressed since the last time I was there. I can handle the more “minor” challenges like difficulty clipping my name tag onto my lapel or trying to keep up with everyone while heading to the luncheon area. But sitting down for lunch and watching everyone at my table so effortlessly cut into their food, while I sat their acutely aware of how awkwardly I now hold my utensils and struggle to cut my own food, did not feel like something I could handle. It took all of me to not flash forward to a time where I might have to sit down to a meal and ask the person next to me if he or she wouldn’t mind cutting my chicken for me.

 

 

If you’re still here, if you’re still reading, if you are still with me, I am grateful for you.
I have tried to hold these experiences quietly within myself. But I can’t. I can’t hold them alone. They are too heavy. They will crush me.

Thank you for holding them with me. Thank you for not running away out of discomfort or fear. Thank you for receiving my invitation and for choosing to attend.

I am grateful for you and I am grateful for the one thing this disease has forced upon me- the strength to share and be vulnerable. Because if I didn’t have it, if I couldn’t do what I’m doing right now, I would be so lonely. And the loneliness of carrying this by myself would disable me in a way that, unlike all the rest, I wouldn’t be able to adapt to.

Share this:

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook

Like this:

Like Loading...
Kitchen dreams (and nightmares)
Pain is inevitable. Suffering is a choice.

Related articles

Rubber bands, Graphs, Psychedelics and…
Harder To Look Away
Suffering = Pain x Resistance
La vita è pazza, no?
As we slowly exit the…
concrete tunnel
Tunnels
My Son’s “Car Mitzvah:” A…

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

More Information about HIBM

Please visit the NDF website for more information about HIBM and how you can help fund a cure Neuromuscular Disease Foundation

Subscribe to “Living with HIBM”

Join the email list to get notification of new posts.
CLICK HERE TO SUBSCRIBE

Archive

  • January 2023
  • March 2022
  • September 2021
  • June 2021
  • May 2021
  • January 2021
  • July 2020
  • April 2020
  • January 2020
  • October 2019
  • August 2019
  • May 2019
  • November 2018
  • October 2018
  • September 2018
  • February 2018
  • January 2018
  • December 2017
  • November 2017
  • October 2017
  • September 2017
  • August 2017
  • July 2017
  • February 2017
  • January 2017
  • December 2016
  • September 2016
  • April 2016
  • March 2016
  • February 2016
  • November 2015
  • October 2015
  • August 2015
  • July 2015
  • June 2015
  • April 2015
  • March 2015
  • January 2015
  • December 2014
  • November 2014
  • October 2014
  • September 2014
  • August 2014
  • June 2014
  • May 2014
  • April 2014
  • March 2014
  • November 2013
  • September 2013
  • August 2013
  • June 2013
  • May 2013
  • February 2013
  • January 2013
  • December 2012
  • October 2012
  • August 2012
  • June 2012
  • May 2012
  • March 2012
  • February 2012
  • December 2011
  • November 2011
  • August 2011
  • July 2011
  • June 2011
Theme by Colorlib Powered by WordPress
%d