CMT BFFs (Best Friends Forever)

Two long-distance pen pals with CMT finally meet after six years — and find that the differences and similarities in their symptoms enhances their friendship

Pen Pals Danise Armstrong and Linda Scheidt
Article Highlights:
  • After meeting through Quest magazine, two women with Charcot-Marie-Tooth disease (CMT) — one from Texas, one from New Jersey — finally share a visit at the home of the author in Texas.
  • The visit was a great success on all levels, and the two compared notes on how they adapt to similar, yet unique, CMT symptoms. 
by Danise Armstrong on January 7, 2013 - 9:12am

Quest Vol. 20, No. 1

Nurtured by letter, by phone, by email, by text messaging, the deep-rooted friendship that has developed over six years between Linda and me is undeniable!

Hi, my name is Danise Armstrong, I am from Texas, and I have Charcot-Marie-Tooth (CMT) disease. I was not “formally” diagnosed until I was an adult, but we knew I had it because it runs heavily in my family, including my mother, oldest sister, one of her children, one of my children and my granddaughter. Living a life with CMT was difficult at times, but from an early age we learned how to do things differently, just simply to make it work! After 56 years, the way I do things is not “different,” it’s just “my way.”

Because of my CMT, we became members of the MDA family and began receiving Quest magazine. About six years ago, I came across a letter in the magazine from a woman named Linda Scheidt in New Jersey, who was close to my age, had CMT, and wanted to compare notes with someone else with CMT. I sent her an email, and we began a very “cautious,” rather “generic” relationship, because after all, you really don’t know if this person is “real or fake,” do you? In a very short time, we both realized that we were two very real, 50-plus women, with children, grandchildren and similar lives that included dealing with CMT.

Soon, one of us asked the other for her phone number, so we could really chat. I’m not sure if it was me or Linda, but the phone calls started, and it was great to put a voice with a name! After that, it became holiday phone calls, birthday phone calls, “you won’t believe what my grandchild said” phone calls, and “how’s the family” phone calls. It was as natural for us to call each other as it was to call our local friends!

Next, we wanted to see pictures of each other, our families, our homes and all that goes with it. Thanks to Facebook, we were able to do just that. It stood to reason that the next step in this very unique friendship was to meet, face to face.

That took some time and planning because she’s in New Jersey and I’m in Texas, but after approximately six years, it finally happened. Linda arranged to fly to Texas and visit for four days in September 2012!

I couldn’t wait to introduce Linda to all my friends and family. Where would I take her, what would I show her, what would I cook for her? All these questions ran through my head — and truthfully, simply sitting together at my kitchen table with a cup of coffee and talking and talking and talking sounded pretty good.

Two women who came together because of their “disability” now had the “ability” to finally meet and laugh and cry, but most importantly hug, because Jersey Girl was coming to Texas!

The visit

Linda Scheidt (left) and Danise Armstrong (right), sitting at Danise’s dining room table.

The length of time Linda was in Texas felt more like four hours than four days.

As soon as we saw each other at Houston Intercontinental Airport, the waterworks began — the culmination of six years of sharing good news, bad news, emails and phone calls. On the 90-minute drive home, I don’t believe there was a lull in conversation for a nanosecond. There was so much to talk about. As we’re driving through small towns and pasture land, Linda was shocked at how many fields of cows she saw. Yes, I said cows. She told everyone she talked to back in Jersey that she had never seen so many cows, thus confirming the stereotype of Texas. Her friends and family probably thought we had cows in the backyard and a horse hitched up at the front hitching post. My daughter and I cracked up.

Walking notes

Once we got home and ate dinner, things calmed down to a comfortable pace, and both of us kicked back in a recliner. With footrests up, we noticed each other’s feet, which were identical. I had never seen another person's foot that looked like mine, except my sister’s, who also has CMT. Small, short little toes, with a very high arch and a very high instep. 

We compared a few notes on where and how we walk best and what we both try to avoid. We both actually hate to wear shoes, but I walk better barefooted and she wears slippers. As a matter of fact, she wore her slippers the whole time she was here, inside and outside. 

She uses a walker when she’s out in public. If I go somewhere that includes a lot of walking, I have a small “shopping cart” that I push. While it really comes in handy when I’m at the mall or somewhere that doesn’t have any carts, I’m really using it for just a touch of balance that I need.

A complementary pair

Strangely enough, while my walking is better than hers, her hands are much better than mine. I gave her a necklace with a round disk that had a picture of the state of Texas, and to my surprise, she undid the clasp, put it around her neck and hooked it together in the back. I couldn’t do that when I was younger on my best day, much less now. With the lack of feeling in my hands, if I can’t see what I’m doing, I can’t do whatever it is.

So, finding out this info about the both of us, it seemed that we would make a pretty good team. I could get up and get something from across the room for her, and she could open packages and squeeze little clips for me that otherwise I would have to use my teeth to do! 

Over the four-day visit, we seemed to get closer and closer. Anything I had to do to “make something work” didn’t require an explanation, because she understood and vice versa. It was comforting to be able to do the weird things we have to do to make something work, and not be judged or pitied. For example, if I drop something in the middle of a room, I have to kick it over to something that I can hold on to in order to pick it up. And anytime something requires hand strength to twist or tear open, I use my teeth.

A friend who understands

With Linda, I felt the kind of comfort you only get while being with family who love you no matter how many times you drop something, trip over your own two feet, or feel your knees just buckle under you for no apparent reason.

Linda shares the same fears that I have, such as encountering a large curb or, God forbid, finding stairs but no elevator; or ordering something off a menu that has to be cut with a big knife; or walking across an uneven lawn or thick sand.

The words “relaxing” and “walking” are terms that we would never utter in the same sentence. People with CMT have to think about these things every time we go out of our comfort zone, our home. To have a friend who totally understood and shared these fears was just one less thing we had to worry about.

So, at the final minutes of our visit, while standing at the curb at Intercontinental Airport, it’s no surprise that she again started crying and I was right behind her. Or, was it, I started crying and she was right behind me?

Thanks to Quest magazine for bringing us together. Though we share a difficult disability that makes each of our lives trying, it has also made our friendship so easy and the bond between us so strong.

Danise Armstrong lives in Nederland, Texas, with her husband of 38 years, her adult son who is studying to become a registered nurse and various pets. Her daughter and granddaughter live nearby. After 25 years in the car rental business (10 years as owner of her own company), Armstrong retired on disability in 2007 due to progression of her CMT symptoms and a knee replacement. These days, she says, “I love Facebook (probably too much), online shopping, or regular shopping as long as I have my cart! I’m a coffee drinker, and love to have friends over to share a cup and chat!”

Your rating: None Average: 5 (10 votes)
MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email publications@mdausa.org. See comment policy