“I was diagnosed with multiple sclerosis in 1995 and have had to go from seeing myself as able-bodied to seeing myself as someone with a disability. I had gone to a neurologist to humor my primary care physician, who was concerned about some symptoms I was having, and I fully expected to get an all clear, but that’s not what happened. The neurologist was doing an eye test on me when the nurse stuck her head in the door. He called out to her, ‘Come here! You’ve never seen this, and this is a textbook case!’ I was sitting on the examination table with my legs dangling, not knowing what was happening or what his excitement meant. Then he explained that my eyes were not tracking together, and the next words out of his mouth were, ‘You have multiple sclerosis.’ I went into shock. I do remember his telling me that a third of people with MS do so well that no one else would even know that they have it. I thought at the time that I didn’t care for those odds. Now I would note that, if no one else knows, the person with MS certainly does.
“In MS, your immune system attacks the myelin sheath that protects your central nervous system, so that messages from the brain may not reach their destination or they may be garbled. Since gaps in the myelin sheath occur in different places for different people, the disease almost never manifests itself the same way. That’s one of the frustrating things about it: nobody can tell you what will happen or give you any kind of a timeline.
“When I was first diagnosed, I spent an inordinate amount of time feeling sorry for myself. I could have stayed in a fetal position indefinitely, and the world would have continued merrily on without noticing. I finally realized that I had a choice to make. I decided that I wanted to get back into the game. Staying in self-pity is understandable, but it won’t help you or the people around you. It’s not a place you’d want to live.
“I’m a poet, so one of the ways I deal with having MS is through poetry. I resisted writing about it at first; I didn’t want to be known as ‘the poet with MS.’ Not long after my diagnosis, however, a former professor suggested that not writing about it was a form of denial. So I decided that I needed a foil, someone to whom I could address the poems regarding MS, preferably someone who had been there. Doing this would allow me a modicum of distance. When I’d first been diagnosed and was searching for information, I had run across an encyclopedia in the medical reference section of the library. In the volume that contained the entries for ‘M’ and under the topic ‘MS’, there was a picture of a familiar-looking woman with a cello. The caption read, ‘Jacqueline du Pré, famed cellist, has found a new career as a teacher, passing on her knowledge to a new generation.’ I know the editors of this encyclopedia intended for this caption to be hopeful, but at the time I was reading it, Ms. du Pré had been dead for seven years.
“After the conversation with my former professor that day, I thought back to the moment in the library when I had seen that photograph and caption. That's when I realized that Jacqueline du Pré was the foil I had been looking for. I began to write a series of poems that is ongoing, just as dealing with the illness and the changes it has caused in my life is ongoing."
“In MS, your immune system attacks the myelin sheath that protects your central nervous system, so that messages from the brain may not reach their destination or they may be garbled. Since gaps in the myelin sheath occur in different places for different people, the disease almost never manifests itself the same way. That’s one of the frustrating things about it: nobody can tell you what will happen or give you any kind of a timeline.
“When I was first diagnosed, I spent an inordinate amount of time feeling sorry for myself. I could have stayed in a fetal position indefinitely, and the world would have continued merrily on without noticing. I finally realized that I had a choice to make. I decided that I wanted to get back into the game. Staying in self-pity is understandable, but it won’t help you or the people around you. It’s not a place you’d want to live.
“I’m a poet, so one of the ways I deal with having MS is through poetry. I resisted writing about it at first; I didn’t want to be known as ‘the poet with MS.’ Not long after my diagnosis, however, a former professor suggested that not writing about it was a form of denial. So I decided that I needed a foil, someone to whom I could address the poems regarding MS, preferably someone who had been there. Doing this would allow me a modicum of distance. When I’d first been diagnosed and was searching for information, I had run across an encyclopedia in the medical reference section of the library. In the volume that contained the entries for ‘M’ and under the topic ‘MS’, there was a picture of a familiar-looking woman with a cello. The caption read, ‘Jacqueline du Pré, famed cellist, has found a new career as a teacher, passing on her knowledge to a new generation.’ I know the editors of this encyclopedia intended for this caption to be hopeful, but at the time I was reading it, Ms. du Pré had been dead for seven years.
“After the conversation with my former professor that day, I thought back to the moment in the library when I had seen that photograph and caption. That's when I realized that Jacqueline du Pré was the foil I had been looking for. I began to write a series of poems that is ongoing, just as dealing with the illness and the changes it has caused in my life is ongoing."
John Reed's poetry online ---
- http://www.poetryfoundation.org/poetrymagazine/browse/163/5#!/20603903
- http://www.poetryfoundation.org/poetrymagazine/browse/163/5#!/20603901
- http://www.poetryfoundation.org/poetrymagazine/browse/164/2#!/20603980
- http://www.poetryfoundation.org/poetrymagazine/browse/170/3#!/40733861
- http://www.poetryfoundation.org/poetrymagazine/browse/170/3#!/40733862
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