I listened to Dr. Benjamin Gallais – Ph.D. presentation yesterday on the (Myotonic Dystrophy Foundation) MDF website. He talked about the research that he’s done on behalf of Myotonic Dystrophy (DM) individuals. He says that social avoidance is very common with DM individuals. I assume that is most likely due to their poor motivation. This leads to social isolation. I was always taught that the worst thing that you can do to someone is to ignore them. Isolation is considered a form of torture because it is so hard on the human soul.

This brings to mind a couple of thoughts. The first one being how important it is for us to connect with one another and especially those that you have something in common with. When you connect with others that understand DM you can find a sense of community since there are many that have similar life experiences and feelings as you do.

There are many DM support groups. Follow this link to find about the many DM support groups that are available through the MDF. https://www.myotonic.org/find-support

I facilitate two DM support groups, both on Zoom. One of them is called the Mountain West Myotonic Dystrophy Support Group and is held on the third Tuesday of the month at 11 a.m. MT, 1 p.m. ET. Even though it is called the Mountain West support group it is not exclusive to this region. I live in Utah, hence the name. I have individuals participate from BC Canada, all the way east to New York and as far south as Texas.

I also co-facilitate a support group for (Juvenile Onset Adults) JOA’s with Carolyn Valek. We have individuals from all over the United States join us. This is held the third Tuesday of the month at 2 p.m. MT, 4 p.m. ET. We have had many wonderful discussions over the couple of years that we have been on Zoom.

The Mayo clinic says “For many people, a health-related support group may fill a gap between medical treatment and the need for emotional support. A person’s relationship with a doctor or other medical personnel may not provide adequate emotional support, and a person’s family and friends may not understand the impact of a disease or treatment. A support group among people with shared experiences may function as a bridge between medical and emotional needs.” Participating in support groups can help you find a sense of community.

Please feel free to reach out to me if you are interested in participating in either of my groups. If not mine, then I hope that you will join one of the many other support groups.

There is also a National MDF conference coming up this Sept. 2022 in San Diego. Follow this link to find out more information. https://www.myotonic.org/2022-mdf-annual-conference I have found it very helpful to attend these conferences and to be with others in my same situation.

Emily Dickinson’s poem “I’m Nobody” expresses how much it means to find others like ourselves.

I’m Nobody! Who are you?
Are you – Nobody – too?
Then there’s a pair of us!
Don’t tell! they’d advertise – you know!

The other thought that comes to my mind is about my family, specifically Kent and Michael. They have both expressed feelings of “Notice Me – Don’t Notice Me”. Most all of us like to be noticed for positive reasons. Kent loves to be with other people because he is really good at drawing out the other person and this makes him feel good. But he was always cautious about being noticed for the wrong reason. He was always afraid of being in trouble, so he was very good at following the rules so that he could stay just under the radar.

Michael is a lot like Kent. He LOVES people. And they both have a great sense of humor. But Michael’s speech impediment always got in the way of his ability to connect with others and his humor was often missed because of his unintelligibility.

Our family used to take voice lessons and our teacher tried to find songs that would express us as individuals. She had both Kent and Michael sing Mr. Cellophane from the musical Chicago because it expressed their feelings so well. These are the lyrics.

If Someone Stood Up In A Crowd
And Raised His Voice Up Way Out Loud
And Waved His Arm And Shook His Leg
You’d Notice Him

If Someone In The Movie Show
Yelled “Fire In The Second Row
This Whole Place Is A Powder Keg!”
You’d Notice Him

And Even Without Clucking Like A Hen
Everyone Gets Noticed, Now And Then,
Unless, Of Course, That Personage Should Be
Invisible, Inconsequential Me!

I Tell Ya
Cellophane
Mister Cellophane
Shoulda Been My Name
Mister Cellophane
‘Cause You Can Look Right Through Me
Walk Right By Me
And Never Know I’m There…

Suppose You Was A Little Cat
Residin’ In A Person’s Flat
Who Fed You Fish And Scratched Your Ears?
You’d Notice Him

Suppose You Was A Woman, Wed
And Sleepin’ In A Double Bed
Beside One Man, For Seven Years
You’d Notice Him

A Human Being’s Made Of More Than Air
With All That Bulk, You’re Bound To See Him There
Unless That Human Bein’ Next To You
Is Unimpressive, Undistinguished
You Know Who…

Cellophane
Mister Cellophane
Shoulda Been My Name
Mister Cellophane
‘Cause You Can Look Right Through Me
Walk Right By Me
And Never Know I’m There…
I Tell Ya
Never Even Know I’m There.

Hope I Didn’t Take Up Too Much Of Your Time.

Besides this song expressing the way that Kent and Michael feel, it seems to express the way that many of us in the DM community feel.

I blog because of the isolation that I have experienced due to the confusing nature of DM. I am hoping to raise awareness about this group of people. The individuals in the DM community are some of the kindest people that I know and they have so much integrity and sensitivity.

I hope that my writing can make more of us aware of others and especially those in the DM community.