Stand on her own feet

Maria was 21 years old when I met her in March. She has a physical disability of the bones and ligaments which is caused by Morquio Syndrome. It is a rare genetic disease of metabolism in which the body is missing or doesn't have enough of a substance needed to break down long chains of sugar molecules called glycosaminoglycans (formerly called mucopolysaccharides). The physical characteristics of Morquio Syndrome include abnormal heart development, abnormal skeletal development, hyper-mobile joints, large fingers, knock-knees, dwarfism, widely spaced teeth, bell-shaped chest, enlarged heart and more. Each person with the disease manifests a little differently. Maria has some of those physical characteristics which affect her ability to walk and perform some daily activities independently. She used to walk with crutches until third grade when she had a leg operation and despite the operation, her muscles still atrophied. 

In the first session, I asked Maria few questions and reviewed some exercises that she had practiced with her previous trainer. I observed her movements while making mental notes. After the assessment, we began our session with breathing awareness. Since that day, I met Maria once a week for the next nine months. She is smart, creative, humorous, good-hearted and strong-minded. During this period of time, we worked on sensing, connecting, organizing and engaging different body systems to bring new awareness to her body. Her muscle tone had also increased which gave a better support to her dynamic alignment from sitting to standing. In our last session, she was able to take one hand off from her walker while standing. This was a tremendous improvement for someone who before used mostly her arms strength to support herself when standing. Maria's parents and I were happy with her progress. However, we have to put our sessions on hold for a while as Maria is away to pursue her study in arts and disability.

After working with Maria, I understand disability differently and only see Maria’s capability. She demonstrated how to move beyond her limitations with a clear intention. She reminded me one of my realizations. I wrote in my journal: "I have the whole world when I turn my mind in the right direction." Maria definitely connects her mind with her body better than a lot of people who are physically in shape. I am excited for her new journey and will miss her a lot.