HEARTACHE

I met him during his initial occupational therapy assessment. He had been admitted to CMC after spending a month in a local hospital. He is eighteen years old and his spine was injured in a wrestling accident in the middle of last November. He has a C4 complete spinal cord injury leaving him with the ability to shrug his shoulders and there is a mild flicker of biceps muscle activation on his right arm. He is the youngest of four children. His father is a farmer and his mother a housewife. He lives in a village house with a mud floor and asbestos sheet roof. There is no toilet in the house. The front door is too narrow for a wheelchair to fit through, and it is likely that if a wheelchair could fit through the door, there would be little room for it once it made it past the threshold.

The patient’s father was present during the assessment to provide information as necessary. Towards the end of the evaluation, I looked up at the father. His demeanor had changed. As tears rolled down his weathered face, my concentration turned briefly towards choking back my own tears. This father had no idea how he was going to be able to take his son home and care for him there. I had no ideas either. I felt completely helpless. Sure, I could help him maintain his shoulder shrug and possibly gain a little strength in his biceps for elbow flection. I could help him with sitting tolerance. But I could not make his home bigger. I could not answer the father’s burning questions. I could not even tell them it would be alright.

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. 

I still have no answers for this patient. I have no idea how to establish goals for a case like this. I have no idea how to help this patient “live life to the fullest.” I only have a broken heart, and another reason to pray.

** Note:  I have received written consent from the patient to share his story.