The Story of “P”: A 19 year-old Spinal Cord Injury Patient



Eighteen patients with amputations and
spinal cord injuries share this room



The GAF team has had a productive time in Sri Lanka.  We have visited International NonGovernmental Organizations (INGOs), local NGOs, and all three of the nation’s rehabilitation centers for physically disabled individuals. The rehab hospitals lack much of the resources available in more developed countries, but the staff are competent and incredibly caring.  In spite of the competent, well-meaning staff, because of the challenges described in our previous blogs, the disabled patients at the rehabilitation centers face bleak futures of isolation, dependency, and depression.   Below is the story of one of the patients we met.

We traveled half a day through the dry, arid countryside to tour the rehabilitation hospital and the breeze from the fan was a welcome relief from the hot July air.  We sit in the middle of a makeshift rehab facility in an open breezeway next to the nurse’s station.  On each side of the breezeway sits two large rooms that are further divided into patients’ quarters. The opposing sides are open to the outdoors and the gentle breeze. The floor is a smooth concrete slab with wooden joists that hold up the roof that is made of corrugated sheet metal and a layer of thin, high efficiency insulation. It is surprisingly comfortable given the extremely arid weather.

 “P—come over and join us” The director said with a smile as she waved the young man over to meet us. He was a 19 year old slender teenager with dark brown hair and inquisitive eyes---but  apparently very shy.  With the assistance of a nurse, he slowly pushes his heavy wheelchair over to meet us.  The director smiles brightly at him, “P sustained a spinal cord injury (SCI) in a bus accident nine months ago.  He is now medically stable.  However, he is unable to go home because his house is not accessible and his family lacks the resources to take care of him.”  P wearily looks at us as he positions his wheelchair in the semi-circle of Global Abilities representatives and rehab hospital personnel.  He sits in a three-wheeler style wheelchair donated by Motivation.  It has two 25” tires with aluminum push rims attached to the seat and one large caster wheel  in the front of the chair designed to handle rough terrain.

As we learn more about his injury,  I realize that P and I share similar injury levels.  Neither of us can move any fingers, we have limited arm and hand function, and we are both completely paralyzed below the chest level.  P reminded me so much of what I felt when I was injured 17 years ago.  I remember fearing that there was nothing worthwhile to look forward to, that there was nothing meaningful I could ever achieve, and that I would be a burden on my loved ones for the rest of my life.  I asked him what he did before he got hurt. “I was a student” he replied…. “to become a teacher.”  “Will you go back to school when you return home?”  He looked melancholy and replied that there was nothing for him to do!  P needed help with all his activities of daily living (ADLs), so he believes that he does not have the physical ability to go to school.  His hand movement is severely limited, so he does not think he can write or keep up with his schoolwork.  Even if he were personally capable of returning to school, there are no universities that are wheelchair accessible, and no employer who would hire him.  These obstacles are incredibly daunting, so I understand how P has such a pessimistic outlook on life.

I shared with him my story.  P listened attentively and asked plenty of questions.  How can I write?  How did I manage to go to school?  How do I drive?  How do I dress myself?  How do I go to the bathroom without help from others?  I showed him how I write and type on a computer, and I gave him one of the gel pens that enables me to write.  I also described how I do the other ADLs that allow me to live so independently. 

An SCI patient in a WorldMade chair
donated by Motivation

Although I have worked hard to achieve my level of self-sufficiency, I credit my environment for helping me.  I am incredibly fortunate to live in the United States!  I am blessed with buildings that are wheelchair friendly, adaptive equipment that enable me to be independent, and trained healthcare professionals and peer mentors that showed me the way.  I acknowledged that P does not have all the community supports that I do.  However, even with all the assistance available in the United States, there are still so many disabled individuals in the US who are isolated, depressed, and more dependent than they need to be.  Conversely, I know of individuals with disabilities more severe than mine and without many of the resources I enjoy who have made rich, vibrant lives for themselves.  I explained to P that we founded Global Abilities to help disabled persons like him return to being active and engaged in their communities.  There is still so much that P can achieve in life, but he has to do the vast majority of the work.  I explained that, if he put in the effort, we would help him along the way. 

P and I promised to keep in touch with each other.  I look forward to helping him grow, to helping him achieve far-reaching goals, and to helping him become integrated into his community.  I also promised P that one day, I will be incredibly proud to attend his wedding.