Myalgic Encephalomyelitis from a
Friend's Perspective

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veronica_gutierrez

 

Early one morning in the fall of 1987, I took my seat as usual in the front of Mrs Nytes’ fifth grade classroom in Tempe, Arizona. With my fellow students, I listened to her announce that as part of our English exercises that school year we would correspond with other children our age. While she had our attention, Mrs Nytes explained that each of us would be paired up with another fifth grade student in a school far away; not anywhere in the United States, nor even in our continent. Pulling down the large overhead map and using a pointer to indicate an island far across the ocean, she turned towards us to declare dramatically, “The United Kingdom”.

We immediately raised our hands to ask questions: Do people there live in castles? Do knights ride their horses and fight for their lady’s hand? Does the king wear a big crown and sit upon a huge golden throne? Do dragons still frighten the town and eat people?

Mrs Nytes, a diminutive woman, answered our questions with an air of excitement as she bounced about the room passing out names. By the time our pencils and paper were lined up on our desks we had been ignited with her enthusiasm. We wrote our introductory letters in excited silence, then filed up to her neat desk where it stood before the chalkboard so that she might review our spelling. By the end of the week all of the letters were in order. Stuffing them into an oversized envelope, she mailed them that evening. And so the wait began.

A few weeks later, a large envelope overflowing with foreign postage arrived for Mrs Nytes, Our Lady of Mount Carmel School, Room 3. An orange construction paper card with a skilfully drawn bunny on the cover was from my designated pen pal. Glancing at the signature, I read for the first time: Louise Sargent. She was nine years old.

During that fall and the spring of 1988, packets of letters exchanged frequently between the two classes. I was impressed by Louise’s proper speech, though confused at the same time by her use of words. When I asked my father what a pub was, he said it was a place I was too young to go. And I wondered why she called her mother Mum instead of Mom.

After fifth grade came to an end and summer vacation began, Louise and I fell out of touch. Shortly after the Easter of 1989 – following several months of silence – I unexpectedly received a thick letter at my home, addressed in her neat hand, in addition to a small gift as a way of apology for not writing. With that simple gesture, our correspondence resumed.

As it often happens with children, I was more interested in my friends at home than in a British girl I would probably never meet. I did read with interest each letter as it arrived, but when she mentioned feeling ill I was not concerned. When her health problems forced her to leave school for a short time I wrote a letter telling her I was sorry, but forgot about it as soon as my father mailed it.

Louise’s health did not improve. She soon dropped out of school permanently, became bedridden, and confined to a wheelchair. During this time our letters became more frequent, for, true to the nature of children, her friends from school soon tired of visiting her. She was afraid and alone and she wrote about it to me. I did my best to support her by writing funny letters and sending small gifts, to which she reciprocated. It provided her with a small diversion, but I could do no more from across the ocean.

By the time I reached high school Louise had been diagnosed with M.E. Despite some periods of silence between us, we continued to exchange letters frequently. In those days it took about a week for a letter to travel from America to England, and for a period of time we wrote every two weeks. But it wasn’t only Louise who needed a friend. Shy and lacking in self-confidence, I was not popular in school. I had a sister near my age, but as teenagers we were not close. During those years, I confided in Louise, and she confided in me.

In the fall of 1996 I moved to San Francisco, California, to attend college. A change of address did not immediately affect our exchange of letters. Becoming caught up in the excitement of living away from home, however, I soon began to allow more and more time to lapse between my letters. I didn’t even notice when Louise was uncharacteristically silent for months on end.

On my way to Spanish class in late November of my freshman year, I looked in my mailbox to find a letter from her. Running late as usual, I tore the envelope open and began to read as I mounted the stairs to the Lone Mountain campus. Stopping dead in my tracks I was nearly pushed to the ground by the other students as they rushed past me in a blur, on their way to or from class: Louise had attempted suicide.

Forcing myself to climb the remaining steps, I nearly blamed myself. A couple of years previously she had sent pages and pages of unhappy letters wondering why she should continue living in her condition. Using my background as a Catholic I wrote to her about God’s great gift of life. Louise thanked me politely but asked if I could make another argument for life, but to please not mention God as it didn’t appeal to her. I did so and nervously awaited her response. She soon sent a cheerful letter and I breathed a sigh of relief, believing that the crisis was over. I was wrong.

I read with astonishment the tale of her most recent attempt to take her life, for she confessed that this was not the first time. I was relieved, however, to learn that she had concluded from her nightmarish experience that she must accept life as it came. Nevertheless, I wrote to her immediately and called her that Christmas.

Since that time Louise and I have had our ups and downs in life, but we continue to write, to listen, to confide, and to encourage. She never fails to inspire me with her seemingly bottomless cup of cheer, her honest concern for my well-being, and her care for others, especially her family. Please take a moment to read Louise’s own article M.E. My Story.

Louise has been, and continues to be, a dear friend. We have never met (despite the year I studied abroad at Oxford University), and have spoken by phone only a handful of times. But the distance, the changes in our lives and families, her illness, and my frequent address changes have not been enough to make us forget our friendship. I pray we never do.

 

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