When the Myotonic Dystrophy Foundation (MDF) was started in 2007 their mission was “Care and A Cure.” That seemed so fitting because, as most of us know, besides those living with DM needing a cure, the care of individuals with Myotonic Dystrophy (DM) is very comprehensive. DM is the most variable of all known conditions.
It does not affect one person with this condition in the same way that it affects another. Each person in my family is affected differently from another. “DM affects almost everyone differently, and you may end up knowing more about the disorder – especially your particular case – than any individual specialist you see.” (https://www.myotonic.org/working-your-myotonic-dystrophy-care-team)
As I was raising my children and I didn’t know what made them so different from their cousins and classmates, it felt as though there was a lot of stigmatization (the action of describing or regarding someone or something as worthy of disgrace or great disapproval.) This lack of acceptance caused a feeling of isolation in me. My children didn’t know anything different than what we were experiencing. In an effort to shield them from feeling isolated I homeschooled my children for 6 years. They didn’t seem to fit in at school. They were bright and got good grades but they didn’t like school and resisted going to school.
Homeschooling gave them a safe place for learning and connection. We also felt isolated from extended family and eventually our religion “ex-communicated (ex-community)” us. These experiences created even more isolation and caused me to wonder what was wrong with us. As we became more isolated, we needed to rely on each other in order to find value in ourselves. Our relationships amongst each other were the safest connections that we had. We didn’t realize that there was a common, diagnosable disorder in each person in our family.
I knew from my bachelor’s degree at the University of Utah how to find answers and resources. I was always trying to figure out what was separating us from others, but I could never quite put my finger on why we seemed so different. I actually internalized our separation as being something that I was causing. I would try to be a better wife and mother but the isolation didn’t change. It wasn’t until my oldest was 20 that we got a diagnosis of DM for all of our children. This was in 1998. Very little was known about DM at that point in time. But as we found others that lived with this disease we started to find answers and an understanding of our family’s unique characteristics. We also started to find a community that we could relate to and therefore were able to express ourselves honestly.
We live in Utah and we didn’t know anyone else with DM except for Kent’s brother and his child. They didn’t seem to have the experiences of stigmatization and isolation that we had. It wasn’t until we found a few others living with DM in California and Florida that we started to find some connection and community with others. Gradually we started to find a place where we felt that we belonged.
Another place that we found community was at medical appointments. Because of all of the systems affected by DM we saw many specialists. Ranging anywhere from Anesthesiologist, to Audiologist, Cardiologist, Dermatologist, Dietician, Educational psychologist, Endocrinologist, Gastroenterologist, Geneticist, Neurologist, Occupational therapist, Ophthalmologist, Orthopedic surgeon, Pediatrician, Physical Therapist, Plastic surgeon/oral surgeon, Podiatrist, Primary care physician, Psychiatrist, Pulmonary specialist, Social worker/case manager, Speech pathologist, and Urologist & reproductive endocrinologist.
Not only did we find acceptance in the medical community, we found others that were interested in us. Most medical people have had very little experience with DM since it is a rare disorder. Due to the rarity of DM the specialists were always willing to study about DM and they showed interest in us since we were unique. I was always taught that the worst thing that you can do to someone is ignore them. That was our experience with isolation, we were ignored. So, to have interest in us, even if it was due to our disease, felt validating. My family loved going to the doctor and even enjoyed showing off their unique traits such as the napkin ring effect that happens when a neurologist taps their tongue with the long edge of a tongue depressor. After the tap their tongue puckers where it has been tapped. This is myotonia. When the reflex hammer was used on the pad of their hand near their thumb the myotonia would show. They would smile as the medical team would pay attention.
In the recent past the MDF added “Community” to their mission. Their mission is now “Community, Care, and a Cure.” https://www.myotonic.org/myotonic-dystrophy-foundation-mission I like to think of community as a combination of two words – common and unity. It is my connection with others who either live with DM or care for someone with DM that provides me with a sense of community (common unity).
There are many others with DM that are seeking community. One such person is Olivia Tiner. You can find her at https://youtube.com/@myotonicme6462 Olivia is creating a digital journal. Check her link out. She’s a real cutie and you can learn about living with Myotonic Dystrophy from her.
Another person seeking community is my son Michael. Michael has a degree from the University of Utah in mass communication. He likes to write and he has created a blog. Michael loves to hear from others about his writing so feel free to communicate with him. Unless/until he gets a bigger following he tries to respond to every comment that is made. You can follow him at firstname.lastname@example.org The name of his blog is “Mike’s infrequent posts.”
you know of anyone else that would like me to mention them in my writing, please reach out to me. I love learning from and sharing with each other.