Why the Edgar Allan Poe Museum made my gene-positive wife sad
As her Huntington's progresses, Jill finds new meaning in the author's work
When I met my wife, Jill, she loved that I was a writer. She would smile every time I shared something I’d written. When I asked her about other authors she enjoyed, Jill said her favorite was Edgar Allan Poe.
For Halloween this year, I planned a trip for us to visit the Edgar Allan Poe Museum in Richmond, Virginia, not realizing it would make Jill, who is gene-positive for Huntington’s disease (HD), sad.
The first room we entered featured Poe’s bed and some items with accompanying plaques. These described the writer’s early years, which Jill already knew about because she had studied him extensively.
As I slowly walked around, I saw Jill standing in one place for a long time. In front of her on the wall hung a quote from Poe that read: “Words have no power to impress the mind without the exquisite horror of their reality.”
When I looked closely at her, I saw tears running down her face.
Before I could ask why she was sad, Jill looked at me and said, “I liked Poe when I was younger because I understood his writing. There was an anger to it that I connected with.”
She paused and pointed to the quote. She explained that she no longer experienced that same anger; instead, she felt Poe’s profound sadness. The quote expresses how you can’t truly understand something until you’ve lived it.
“He understands the despair and darkness we feel about HD,” she said.
Jill walked on without completing the thought.
But I knew what she meant. Being a part of an HD family changes a person. Jill knows because her father suffered from it, as did multiple relatives on his side of the family. Hearing about the symptoms and behavior that people with HD exhibit is one thing, but witnessing or experiencing it firsthand is like watching a heartbreaking horror movie.
We entered another part of the museum. A quote in this room read: “The scariest monsters are the ones that lurk within our souls.”
Jill recalled how Poe’s words used to make her feel.
“I thought that quote was about anger,” she said. “I felt it as anger. Now I see it as fear of what’s to come. I work hard to be a decent person who doesn’t say mean things. Will HD make me unable to do that? Will it bring out something in me I don’t want it to? Will HD reveal something dark in me? Can it make me something different? What will be my ‘monster’? What if my behavior makes you mad and you unleash your anger on me?”
Before I could respond, she moved on and found another quote, this one from “The Raven”: “Deep into that darkness peering, long I stood there wondering, fearing,/ Doubting, dreaming dreams no mortal ever dared to dream before.”
She wiped the tears from her cheeks. I felt sad that she was so sad, which was not my intent when planning the trip.
“Do you want to leave?” I asked.
“No,” she said. “This quote is different. It’s about someone pondering things no other ‘normal’ person would think about. When I read it in my younger days, I was alone. At the time, I believed I had thoughts no one else would think, which made me feel lonely.”
She took my hand. I understood what she meant. We have similar thoughts, so we’re “not normal” together.
We held hands throughout the rest of the museum. I could see that Jill’s sadness had subsided and been replaced with a sense of calmness.
In the final room, Jill said she was looking for her favorite quote from one of Poe’s most famous poems. She couldn’t find it, but she was grinning as she said it anyway.
The real quote is: “But we loved with a love that was more than love —/ I and my Annabel Lee.” But Jill said, “But we loved with a love that was more than love —/ I and my Carlos B.”
As she drove us home, I looked up Poe’s “Annabel Lee” on my phone. I wanted to tell her that, whatever HD brings to our lives, we will face it together. Instead, I read her the poem:
“But our love it was stronger by far than the love/ Of those who were older than we —/ Of many far wiser than we — / And neither the angels in Heaven above/ Nor the demons down under the sea/ Can ever dissever my soul from the soul/ Of the beautiful Annabel Lee.”
Except I said, “the beautiful Jill B.”
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Comments
Patty Garwig
My husband has HD and is in the later stages of it. He is 63 yrs old and was diagnosed in 2016. I love Edgar Allan Poe and I relate some of his works to our HD circumstances often. I have the quote "We loved with a love that was more than love" hung on my wall.
Carlos Briceño
Thank you for sharing your story, Patty. I am sad to hear about your husband and will keep you all in my thoughts and prayers. I never really studied Poe, so that trip was especially cool for me. He was an interesting person and a really amazing writer. Jill said that Poe had "big feelings," and was ever so dramatic. Just like her.
John Alves
Thank you Carlos and Jill...Mostly for exploiting your journey,the courage mingled with vulnerability.Ive been tempted often to share . A fully penetrant CAG of 43 has taken me back to when my father could no longer swallow. He passed April 2015 @71. Regarding Jills concerns overt behaviors, I share the same am I going to become undesirable company to those we love,and everyday people alike? Can I be angry with this 43 cag@. 57?!
Carlos Briceño
Thank you for reaching out and reading our column. I am glad Jill is willing to share in hopes of helping people like you. I am sad to hear of your diagnosis and I completly understand your fears and anger. I am hopeful that talking about HD will help Jill have less things to be afraid of as the disease progresses. I hope you have people in your life you can share your feelings with too.