Christopher Reeve, an ordinary man

I have been borrowing books from the Los Angeles Public Library. The nearest branch is a ten-minute walk from Kean and Sit Yee’s apartment. Before decompressing my optic nerve, reading was strenuous to my eyeball and optic nerve. With decompression, although the effects of central scotoma persists, the pressure is gone and I can read more comfortably.

The first I read was Christopher Reeve’s biography in large print, entitled, “Nothing Is Impossible: Reflections of a new life”.

There were so much to Reeve’s life that I didn’t know. In my mind, media images of him reclined far back on a wheelchair with a collar was the explanation. I assumed he lived that way from the time of injury until his demise. I thought someone like Reeve is able to advocate for spinal cord research because of media attention and important people who surround him.

In this book, Reeve showed me that he was no different others who suffered injury high up the spinal cord. Reeve wrestled with insurance companies on lifetime caps, his family dealt with financial issues arising from his costly medical care, and tried hard to stay together as a family since his wife, Dana, now must play multiple roles in the family,

But best of this book is it’s first-person account of Reeve’s life, thoughts, hopes, and passion. We can see how Reeve came to from a near-fatal fall that severed his brainstem from the spine at the level of Cervical-2 of the spinal cord. It was reattached, but required a lot more just shifting Reeve from the bed of the intensive care unit to rhe dayroom where he received visitors. This process itself took about half an hour as Reeve drifted in and out of consciousness during the transfer. He was breathing with a ventilator.

Reeve did not stay reclined in his wheelchair and vent-depend until the end. Thanks to his dedicated aides and therapists, Reeve invested time, energy, and drive, to exercising. His injury was at the level of C-2, which is just below the brainstem. Technically, parts of the body innervated by nerves below that level would not receive signals from the brain to ‘fire’. But with exercise, Reeve was able to move again. He still must use a wheelchair, but the ability to toast champaign and walk in water after a C-2 injury was already a breakthrough achievement. It shocked medical professionals.

It showed Reeve struggle in ways another patient without his fame would struggle. He fought to increase lifetime caps with insurance companies, his wife multitasked taking care of the family and career like any other family in similar predicaments, it showed Reeve struggle as a husband, a father, and a son. Most importantly, it showed Reeve as an average man making significant difference through the legislative process first by empowering himself,

Reading Reeve’s writing tugged at my heart’s strings. He is an icon of self-determination. Not in his image as Superman, but Christopher Reeve as the husband, the father, the son, and friend. Back home in Malaysia, individual liberty still remains a vague idea. Many expect people in need of donations for major surgeries to be poor, uneducated, and weak. They are regarded as and expected to be silent. When I came to facing this stigma, it troubled me so. Having NF does not mean I ought to regress into a shell. Living with NF and the A.B.I. and strying to feel normal in Malaysia is an everyday torment. In Malaysia, I always feel ‘different’ even though I am not. It’s something you have to live with to understand. Words cannot describe. I turn to stories of people abroad such as Christopher Reeve to assure myself that self-determination is acceptable and permissible.

Those of us who want to make a difference with our physical circumstances in Malaysia carry the banner of hope, perseverence, and endurance. But these are basic human qualities. The ability to endure challenges is learned in childhood. Out here, people with disabling conditions go to the polls, they speak up, get active, and make a life out of their predicaments. They don’t just grit teeth and bear the pain.

I might just forget this self-determination conviction and become intimidated by people who remember me as ‘different’ everyday, if not for the stories of those like Christopher Reeve, who keeps my own self-determinations alive.

Thank you Christopher Reeve. You showed me that I can truly be alive by empowering myself with knowledge and exercising basic human rights.