Afterwards, I asked the occupational therapist what would be the outcome of a case like this. Her reply was not what I wanted to hear. I had hoped for something different. She told me he would probably be confined to his home for the rest of his life. My heart shattered. He is eighteen. He has so much more life yet to live. I started to think about the options. What if he did have a wheelchair, one that he could use when outside? Couldn’t he get around that way? Answer: He will be dependent for mobility as he has little to no arm function. (A mouth controlled wheelchair is clearly out of the picture for financial reasons.) He lives in a village where the roads are less than ideal for wheelchair mobility. And to leave the village he would need to take the bus—mission impossible. He may be able to learn how to paint with his mouth, and his family could sell the paintings. This was the one suggestion offered for his future. And then my heartache grew a little stronger and a little deeper.
This patient's story illustrates the vast difference in therapy services between India and the USA in terms of resources and financial means. His story crushed my heart. In the US, and even within affluent population here in India, obtaining a mouth-controlled wheelchair would be an option. In the US, he would be able to receive resources to help him finish high school and even go on to get a college degree if he was motivated to do so. I had a young male patient last week in A2 that is in the same situation as this young boy, only he comes from a little bit of money. My A2 patient may very well go on to finish his college degree. This Q3 patient will probably never leave his village again.
** Note: I have received written consent from the patient to share his story.