Just snap them off for a bit…PLEASE!!!

By Nancy Ester-Sager

That’s my lifetime plea, but of course I know I can't just snap off my legs. If I did, I'd probably misplace them. I must have been meant to do something with them, or they wouldn't be mine.

They are mine!! They hurt. They fight me, and I would never trade them.

Up until recently, I have felt like I belong (or didn't belong) in two different worlds, the disabled world, and the normal world. Now I realize I am in the right world, it’s not like anybody else's. It’s just mine, and it's the exactly where I need to be.

I have a condition called Myotonic Muscular Dystrophy. At first glance, I don't look like I have anything wrong, but very few muscles in my body have the ability to ever fully relax. I have often become dizzy from the pain that it causes me. I can get very stiff and have difficulty getting my brain and my body to work together. I prefer to think of myself and my body as two different things, because that is exactly what they are.

Not being able to get them in sync with each other has caused me an endless amount of frustration. Many years ago, I took some very bad advice. I was told, "Don't give in, don't let it win, you have to fight it". Well, that might be good advice for some people, but it was completely wrong for me and my body. Once I decided to let my body win, I was able to work with it. My body wasn't bad, it just needed to be treated differently. My legs got tired, and they wanted to sit down. There is nothing wrong with that.

Overcoming challenges can be a long process, that’s what makes life challenging, and in the end rewarding. To get to where I am now, I've taken a lot of little steps. I have surprised myself by also taking some really big ones.

In 2007, I received a service dog. He literally and figuratively helps me move forward when I get stuck. He alerts me to situations that might be harmful to me. He has given me validation, and he doesn't see me as the weird person I had always seen myself to be. With him, I wasn't as frightened to take the steps I needed to move myself forward.

When I was in high school, I used to be able to run for long periods of time. It seemed odd to me. I had a lot of pain, and I got really stiff, but once my body got into a rhythm, it was able to run well. In my last year of high school, I was no longer in the PE program, so I stopped running. When I tried to pick up running again after a couple of years, I was unable to get it back, because my legs had become too weak.

Over a long span of 25 years, I mostly took care of my kids and home. I spent 12 of those years home-schooling my children. I also ran an in-home day care service, then later worked with special needs high school students in the community. I received funding through the state of Colorado for my home sewing business called Golden Pear. I specialize in making children's vintage style clothing and toys from original patterns and fabrics.

In June of 2010, I started hand-cycling through Adaptive Adventures. They meet in Wash Park in Denver during the summer. Once I got the hand-cycle figured out, I went as fast as I could make myself go, and all those lost years between running and hand-cycling were sandwiched together. The years no longer seemed lost, and I found the person I used to enjoy being.

I was able to keep the hand-cycle at my home through the winter, and would often ride even when the temperature was below freezing. I found that even though my legs and left arm were weak, my back and right arm had the ability to get very strong. I started wondering what other things I could do if I just kept trying.

In February of 2011, James "Rusty" Stout from Vitality In Action left his business card with my mother who works at Swim 'n Things, a local swimming suit store. I contacted Rusty, and asked him if he knew of a way I could try swimming.

It was only a week later that I was working with Vitality and taking swim lessons with Beth Graf at the APEX Recreation Center in Arvada. Beth had the insight to teach me the way I needed to be taught. She told me what I needed to hear, and when I had setbacks with my legs, she helped me find ways to work with them, instead of fighting against them. Through trial and error, I was able to realize I can do a lot more than I thought possible. I don't have to accept being in pain in order to participate in a life I enjoy. I didn't know how to swim before I went to Apex. I've been going for two months. I finished last week by swimming 22 laps.

There's a saying, "Pain is just a state of mind". That’s bugged me for a long time, because my pain is real. It’s not just in my head.

Aha...now I get it. Now I finally understand. I am sure it’s a different meaning for everyone who has to face it. For myself, I needed to stop being embarrassed. I was needlessly ashamed of my body's quirks. I limited my joy by not adjusting my brain to accommodate my body's needs. I didn't have to limit my fun, I just needed to realize it’s OK to make a few life adjustments in order to find the fun. My pain was a state of mind. I have been able to find again that rhythm I once knew while running in high school, through hand-cycling and swimming. Now I have less pain at the end of a good day.

Is there truly anything nicer than a good day??

Nancy Ester-Sager is a mother, educator, and entrepreneur living in Centennial, Colorado. This is her first guest blog as a participant in Vitality’s Aquatics Program.