November 20, 2013
According to many people my ataxia symptoms are mild, and walking around has not been that bad most of the time, but having watched my father grow more disabled from this disorder I know what my future will be like. This complicated my thoughts and I could not help but be depressed with my increasingly clumsy situation.
I also have a daughter. She has grown from being a stumbling inquisitive toddler into a normal 5yr old who loves to play. Playing all the time and anywhere with anything is the name of the game and that is how it should be. Kicking, chasing, climbing, swinging, and pushing she says, “Play with me mommy”. How could I explain to her that my disorder is making it difficult for me to play with her? Fun became miserable and spending play time with her became a nightmare of fear in my mind.
My “mild ataxic symptoms” became huge ataxic symptoms which severely crippled the precious relationship I was fostering with my little girl. My abilities were declining as hers were growing. Finally it came to be that whenever she asked me to play I would say no. It was so hard to see her little confused face brave the hurt I inflicted onto her with my refusal to participate in what was important to her. “Why won’t mommy play with me”, was her sad face. My heart broke into a million pieces each time. I needed help and I needed it fast. My future looked dark and crippling. I was losing my daughter. I was losing me.
Then Dr. Clouse arrived in Cape Town. One of the first things he taught me was the most valuable lesson of how to “shut the voices off in my head”. They were telling me I was an awful mom and telling me I wasn’t good enough to play. I blamed myself. I blamed the SCA. He helped me let go of the blame and shame. It was hard but doing so helped me begin the rest of what I had to do.
I found my feet again and once again learned how to trust my movements. I learned how to identify the right and wrong feelings and postures that I was producing. With that knowledge I then learned how to play once again. The old me would have declined but with my renewed abilities I went on a picnic a few days ago. The new me saw all the fun I could have. And I did. I so very much enjoyed the fun.
My old nemesis were all there; the swings, the jungle-Jim and the slide. But this time instead of looking at my daughter and saying, “Mommy can’t”, Mommy did! We played and I felt normal. We did normal things. We were having fun just as I had always dreamed a daughter and mother should.
Everything Tom teaches you and helps you re-learn is tailor made to suit your needs. He teaches you how to be you and how to live your dreams. When it pays off like it did for me things really come together and your life is changed and people notice. “You are strong again” my little girl said when I hoisted her up during our playtime!
I am strong and I’ll never forget it again.
Thank you, Tom.
Mariam Apollis ataxia, heels and lip gloss
Cape Town, South Africa