Building Momentum on My Ride With Dystonia

This past summer my husband and I stayed at a hotel that included a free bicycle rental. I have dystonia, a neurological movement disorder, and I totally thought my bike riding days were over. Because the bikes were included with our hotel stay, I decided I had nothing to lose by trying! I was a bit wobbly and couldn’t turn my neck, so it is likely I wasn’t totally safe on this trial bike ride, but I experienced a sense of freedom and exhilaration at the movement. It was exciting, my body participated and I was hooked!

My husband and I didn’t pay much attention at the time to the bikes we rode and only noticed how much we thoroughly enjoyed ourselves. When we got home, we decided to look in to purchasing bikes like the ones we rode and called the hotel to inquire. They took the trouble to go and look at the bikes and told us the bike brand was Momentum with a slogan written on the bike, “Move Happy.” Can you imagine someone with a movement disorder riding a bike that says right on it, “Move Happy?” Pretty incredible.

Soon after, we purchased our own bikes, complete with my own seemingly personal message, “Move Happy.” In addition to my bike encouraging happy movement, the brand name Momentum, written for me to see every day on my bike, caused me to ponder the significance and meaning of the power of momentum. Because my name is Joan and I was getting excited about building momentum, I decided to name my bike MoJo for Momentum + Joan. Silly as it may be, I initiated my new bike to partner with me and encourage me to be an overcomer through movement on my dystonia journey.

It was exciting to wake up to a new day – full of excitement and ready to get on my bike and ride before the sun got too hot. I live close to amazing bike trails and I went all different directions, enjoying the freedom to choose and the thrill that it was my legs taking me there! My legs that had always been strong, but had atrophied and brought me such pain in the recent years with dystonia. I rode to the farmer’s market, four different parks, coffee shops, usually along the river. What adventure! I had momentum and felt like I was in training for what I knew would be a challenging return to work in August.

I started to write an article on momentum in the stress-free days of summer at the height of building strength and momentum riding MoJo. I had experienced joy and energy, despite increased pain and I wanted to share it with others. But it felt too soon to write about it, and I worried that someone might be discouraged rather than encouraged. I decided I needed to journey farther before I wrote about it. I am very aware of how one can feel fragile when in the midst of a flare-up or trapped in an unchanging pattern of pain and suffering. We can get discouraged and scared about our state of health. I decided to wait and travel farther on my journey of Momentum.

The next part of the journey resembled me riding MoJo up a hill and my momentum wearing out. The forward, positive momentum of the summer did create new strength and a new power that enabled me to figuratively climb up a hill at work, where stress and longer working hours impacted my health and body. At first, my bike rides helped the stress immensely and were a boon to starting my work day. In time though, riding MoJo became more and more difficult as the stressful days continued and my body wore out. While I appear “normal” in appearance, my muscles are involuntarily contracting, tightening, and spasming — continually and painfully — in my legs, right arm and neck. When you add stress to this exhausting involuntary workout, it gets even more challenging. The joy I had experienced flickered into some moments of anger. Anger that this was so hard and that my efforts and positive changes were not enough. I worried the demands were affecting my momentum and my health. What if I started to really fall back?

But the writing on my bike still says Move Happy and Momentum. And my faith in God who continually lifts me up presses me on. So, I continue to push through – to ride up the hill, so to speak. It is such a clear illustration for me: riding my bike down a hill to gain speed and momentum for the small upcoming hill, and sweet relief when you make it up the hill. Or coasting down a hill, just plain letting the bike take you, freely and happily. Other times, building strength through distance and tiny hills or having the stamina just to move at all. All of my rides seem to reinforce the message that life and my health journey will have ups and downs. Sometimes it takes everything I have, just like riding my bike on some days takes every ounce of my energy. But other times, a happy moment just feels good and the pain signals are weakened by these moments of joy.

I hope my Momentum Journey will encourage someone to try something they think they can’t do. I was so pleasantly surprised. It might be much smaller or bigger than what I tried. But I believe we have to keep trying for the joy opportunities, for simple pleasures that nip, or snip, a little bit of the pain away. For those who have lost a part of themselves because of a chronic illness, don’t give up on hope. Believe there are new blessings, new joys ahead. The road isn’t straight or flat and smooth but as long as we have breath, the road continues. So, here’s to building Momentum and adding some downhill joy rides on the journey of life.

Footnote: Our new bikes have mirrors, bells, headlights and we wear helmets. My husband and I got equipped from the beginning to be sure we didn’t endanger anyone with our new hobby and my physical limitations.

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Photo by contributor.