After dealing with an uncontrollable gait for some years, Debbie Levi was diagnosed with cerebellar ataxia. Ataxia has taught Debbie the importance of building a strong inner self. This inspired her to keep a gratitude journal, write a memoir and be grateful for life and what it has to offer.
I was in my late 30s (1980s) when ataxia first moved in to take over my body. My young son just joined T-ball and, I was attempting to show him how to run the bases. Surprise! I fell flat on my face! In the next year, my gait was uncontrollable. My body moved to the left when I walked and I held on to walls, fell often.
Since there was no family history of ataxia, I stubbornly refused to admit anything was changing in my body. I sought medical help about 5 years later! In the 1990s, the neurologist gave me a diagnosis, based on an MRI, of cerebellar ataxia. I was clueless about the words cerebellum and ataxia. When he told me (without any compassion) there was NO CURE, I felt punched in the gut. I felt completely alone in the world!!
I worked as an elementary school teacher from the early 1980s until June 2005. I had always wanted to work in education but, my career was cut short by my progressing condition. I was forced to retire at age 55. This saddened me greatly but, when I look back, I am so grateful for my career!
Even though I wasn’t using a cane or walker, everyone on staff knew I was dealing with a progressive neurological condition. I on the other hand was in extreme denial. By 2005, I needed to face facts! I was absent too often.
Today, I enjoy reading, writing, family gatherings, and all music and social events, including spiritual retreats. I practice kriya yoga which stresses daily meditation and breathing exercises. It is a devotional practice that honors the God within us all. It has taught me to see beyond myself and, focus on the big picture in life.
I love low-impact exercises especially water aquatics. The gravity in water is so forgiving and allows me to do movements that I can’t do on land. I highly recommend water exercise!
Ataxia has taught me a lot, but mainly to be GRATEFUL for every moment, for friends, my family, the earth, and you reading this!
Ataxia has taught me the importance of building a strong inner self. It has also made me realize the need for others and to cultivate and nurture compassion towards everything in life. I keep written gratitude journals explaining my struggles as well as my accomplishments. A few years ago, I started a Joy Jar. This jar keeps little post-it notes with gratitudes such as beautiful sunsets, events, people in my life, and always daily tasks that I was able to accomplish on my own. I prefer to focus on what I CAN DO rather than what I can’t. Also, I can re-read “my joys” whenever I feel depressed. It’s my form of self-care.
It is so very important that all ataxians and/or family members help spread awareness about what ataxia is. We must all do this. Fortunately, social media is helping in this regard. I find it very helpful to read about other’s journies on the internet. I find the zoom support groups extremely beneficial. I know I’m not alone!!
A few years ago, prior to the rage on social media, I wrote a memoir entitled “Finding Level Ground” regarding my journey with cerebellar ataxia. One reason was to let other ataxians know that they are not alone. I wanted to reach out to others and help spread awareness to everyone. Another reason was to help raise money for research which is sorely needed! Finally, I wanted to understand the process of grief/loss. Losing physical capabilities is a severe loss for anyone!
I think my book shed light on what ataxia is to my friends, family, and all other readers. (so I’ve been told)
The best advice I can offer to any ataxian is to not let yourself be labeled by self or others, as a victim. It’s important to keep a positive attitude, as difficult as that is! There are choices in life. Either we “give in” and stay miserable, OR we learn to thrive! I believe acceptance of facts is beneficial for a life well spent. You can’t know how strong you really are until you give it a try!
In the words of Martin Luther King, “faith is taking the first step even when you don’t see the whole staircase.”
Big thanks to Debbie Levi for sharing her inspirational story, but also her fun and useful tips!
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.