Progressive Multifocal Leukoencephalopathy

 viral disease brain Risk of developing infection identified
 potential side effect, treatment disease modifying drugs natalizumab
 a common infection completely normally under control
 immune system, causing no problems. immune system weakened
 virus can reactivate cause serious potentially fatal
 inflammation and damage to the brain progressive
 multifocal leukoencephalopathy
 damages nerves, some weakness
 visual problems impaired
 speech and cognitive

The text of this found poem is taken from the Multiple Sclerosis Trust Website (MSTrust). It is a description of Progressive multifocal leukoencephalopathy (PML). This is a personal topic for me because my mother died from the debilitating disease of the brain. PML is a condition that affects the brain in random ways. Each patient has a different experience along the path to an almost certain death. I wanted to capture the progression of the disease and regression of person afflicted with it. When creating this poem I focused primarily on two elements, word choice and the structure to convey a declining terminal path. To start the words in this poem have negative connotations “problems”, “weakened”, and “damage”. I also wanted to remove expectation of recovery or promise return to a normal life. PML has a survival rate of less than 1% over 1 year. It would have been helpful for some of my family to be able to relay the weight of the situation my Mom was in. Some people took any slight improvement as a sign that she was going to get better. The structure of this poem highlights the path of this disease. There are a few ups and downs through the progression, but your cognitive function begins to slip away, to an eventual death. I tried to represent this by beginning with longer lines, representing the better and higher functioning days. And as with the disease stealing cognitive function, in my Mom’s case her ability to talk, each line has fewer and fewer words. Adding strange breaks also illustrates the trouble my mother had communicating. Like what can happen stroke victims, my Mom had aphasia, an inability to say the correct words. This found poem represents my efforts to deal with my mother’s death, through the negative and harsh words, I wanted to convey the cruelty of this disease, and using the structure I worked to reveal the path to an ultimate terminal. When dealing with a sick parent or loved one, it is important to have hope. It is possible for people to recover and they may get better. But we are often blinded by hope, and only hear what we want. Doctors will often give a grave prognosis, with a tiny glimmer of hope, and we response so there’s a chance. Relying on this chance has a heavy cost to be paid in the form of disbelief and crushed spirits.