A few years ago I was reading a book E-Squared by Pam Grout.  She teaches the reader to be aware of how we shape our own life. One experiment was to choose a color of a car and start to pay attention to how many appear in your life. Hmm, that was an interesting experiment. So, I saw a lot of grey cars. Interesting but not a big deal. Later in the book she challenged the reader to look for a yellow butterfly. It was winter and I thought “yeah, right, I never see a yellow butterfly, especially not this time of year.” As I was going about my day I noticed a pillow on my recliner that I can’t even remember purchasing. On it was a beautiful yellow butterfly. To this day that pillow sits in my recliner reminding me of the reality that we can create if we are just looking for it.

There’s an old adage “When the student is ready, the teacher will appear.” I love this adage except with a twist. In my mind it’s about trusting that “When I have a problem, the answer will appear”

Myotonic Dystrophy (DM) presents new problems daily. The way that it affects the body of the DM individual is varied from person to person but also due to the fact that it is a multi-systemic disease that affects all involved in many different ways. DM is a disease that is in our genes and at present there is no treatment for this. But there are many options for treating the symptoms.

My family was diagnosed with DM in 1998 and I have been reading as much as I can get my hands on about DM since then. We also attend conferences and workshops whenever there is an opportunity. I get overconfident and into a place where I feel like I know everything about DM that my family needs. In spite of this confidence I try to stay in a place where I am seeking and open to new information and insights.

In the 2020 DM Myotonic Foundation Conference I attended a workshop on Gastro-Intestinal Issues. https://www.myotonic.org/digital-academy/managing-gastrointestinal-gi-impacts-dm-2020-virtual-conference

Wow, what an eye-opener this was. My third child Michael is more visibly affected by DM than the others in our family. It can get so discouraging and depressing how much it decreases his ability to function. One of the ways that it affects him is his entire GI system. From his swallowing all the way down to the exit of his body. Due to episodes of aspiration pneumonia around 2007 we had a feeding tube put in Michael’s abdomen. This made it so that Michael could stay hydrated. Until then Michael had avoided clear liquids because these liquids always leaked into his lungs because of his weak esophageal muscle tone. But, Michael has always had abdominal pain and we hadn’t found any answers for him except that he took GasX (simethicone) a lot to alleviate his discomfort. This workshop gave me new words to use as I sought out help for Michael.

The new words were “pelvic floor physical therapy.” I asked the neurologist about this new phrase. She didn’t have any information. She didn’t even know where to send me to get this “pelvic floor physical therapy” for Michael. But she could give us a referral for a GI consult. We didn’t know what else to do so we took Michael to see the GI doctor. This was during the Covid shutdown so we had a virtual appointment with Dr. Graham. He was so kind and thorough. He even had Michael pull up his shirt so that he could see his abdomen through the camera. He proceeded to ask lots of questions about tender spots and virtually examined Michael’s feeding tube button. At the end of the visit he told us that he wanted to refer Michael to a “pelvic floor physical therapist.” There! We found what we were looking for.

What a whole new world of answers for Michael. Before working with the new physical therapist we hadn’t realized that Michael couldn’t even pass gas. No wonder he was miserable all of the time. Through months and months of therapy with the Physical Therapist – Peter – Michael started being able to pass gas, and he was even able to reduce the amount of gas in his bowels by learning how to stimulate his digestive and elimination process. He also learned exercises that stimulated his abdominal muscles so that his digestion worked more efficiently.

We had found the Yellow Butterfly in our search for answers. The ironic thing is I didn’t even know that I was looking for a Yellow Butterfly until I attended the GI workshop at the annual Myotonic Conference.  I hadn’t even known to be asking questions. I just thought that discomfort went along with Michael’s DM. I have had to learn to not just look for answers but to also look for questions.

I am often taught to be on the lookout for ways to create and imagine new realities. What if I can’t even imagine the new reality? I have had to learn to ask for insight into what needs to be different for us because my limited mind often can’t conceive of what we need to know.

A teacher can light the way and ease the way – in other words, facilitate learning – but the learner has to walk the path.