Living with Disabilities by Ann S Woodbury – Myotonic Dystrophy Expert

Many of us have heard what it’s like to live with disabilities through the eyes of Emily Perl Kingsley.


I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

In most of my blogs I express the massive weight of what it’s like to live with Myotonic Dystrophy (DM). There is so much that is a hardship for the DM community. But today I’d like to express the positive side of my journey with my DM family.

I grew up as a very ABLE person and saw the world through my eyes of ABLEISM. (social prejudice against people with disabilities based on the belief that typical abilities are superior) I didn’t have patience or tolerance for others that weren’t capable. I just figured that those with limitations weren’t trying hard enough. I was never mean but I was worse than mean. I ignored those that weren’t ABLE. Ignoring someone is the worst thing that you can do to them.

My ableism perspective was celebrated in my education and religious communities. I was always getting great grades, was put in leadership positions and received awards. I was naïve and thought it would be great if I could share with others what I had learned. Hmm, maybe I could discover where my motivation button was and teach others how to find their’s.

Then I started having my family. It took 20 years after I started my family to figure out that not only could I not share with others how to find their motivation button, I couldn’t teach my children how to find their motivation button. After 20 years my family (all 4 children and my husband) were diagnosed with DM. They were diagnosed 25 years ago, before much was known about the cognitive effects of DM.

As I have spent many years with my DM family, and read and learned about it, I understand many of the effects of DM. There is lots of fatigue, excessive fatigue, low motivation and initiative, flat affect, weak muscles, GI issues, the list goes on and on, as most of you know.

The effects are horrible and difficult. But, my journey with my DM loved ones has taught me so much that is positive. I would never give up what I have learned and experienced. If I could wish it away so that my family wouldn’t have had to suffer, I would totally wish for that. But that isn’t an option.

Some of the positive effects of living with my family in “Holland” are:

My family members don’t have the ability to hurry. Traveling life with them has shown me how to take things as they come. If we don’t get somewhere on time, then that’s just the way it is. If I stress about it I only make myself miserable. I TRY and remind myself to enjoy the process of getting them to their commitments. If I do that, we can even laugh and have fun when we are running late.

My family members see things about life so differently than I do. If the house is messy, they don’t care. They are so good at staying in the moment. Sometimes that includes forgetting tasks and focusing on TV too much, or falling asleep. My ability to help them manage their tasks and household is very important or they wouldn’t eat well and would live in squalor. But, keeping their lives in order and flowing isn’t worth it if I don’t remember WHO they are. They each have such incredible uniqueness. Warren has such dry wit. Andrea has time for everyone that she comes across. Michael is insightful and funny. Chad is caring and kind. The incredible individuals that they each are IS the most important part of our journey and I am honored to know and love each of them.