He lurched forward in the chair, nearly folding himself in half at the waist before throwing himself back again. His left leg kicked forward when his shoulders touched the chair. Though he turned his head up, the tears continued to trickle down his face.
“The reason they fired me is because they didn’t like me—I know this is true. There is no other way to explain it. They just don’t like me—I worked all of those years and this is how they thank me,” he said, his right hand tightly clutching several sheets of letterhead with “Microsoft” monogrammed across the top. Before I could read the lines of handwriting traveling across the page, his arm jerked away. The motion of his elbow tossed his wrist into the air like a slingshot launching a stone.
“Can I see the papers?” I asked, leaning against the frame of the door.
As he extended his right arm forward, his left arm shot out away from his body, as if he was flinging a gigantic cockroach from his hand.
He saw me flinch. The papers in his hand were trembling and the whispers of the rustling pages filled the room.
Before taking them, I gingerly asked him, “Are you getting angry?” I felt the muscles in my legs tighten to prepare for any sprints in my immediate future.
“NO!” he shouted, dropping his arm as his torso sharply twisted to the right. “I’m not getting angry! I just talk like this! Okay, yes, I am angry, but I’m not angry at you! I’m angry because this is happening to me and I was unfairly fired and my family is far away and—and—”
His sobs matched the uncoordinated jerking of his limbs; they were choking staccatos that sounded more mechanical than mournful.
“I’m sorry,” he mumbled, his arms still jerking at the shoulders and elbows. “I’m sorry.”
He again raised his arm—still trembling—and I took the papers from his hand. It was difficult to look at him and register his suffering; I was grateful that I could distract myself with another sight.
Scribbled across the pages were fragments of phrases, impassioned sentences, and rows of numbers, some interrupted with dashes:
4698 Harrison Drive 469 Harrison Drive 46 Harrison Drive Harrison Drive Harrison Drive Drive Drive
I speak only the truth. I tell no lies. They speak falsehoods.
425-425-425425 Microsoft Windows login pass login pass login pass login
The truth only. That is what matters. Only the truth. I know the truth. They know the lies. I know the truth. The truth. Truth. Truth. True.
“They told lies, that is why they fired me, they told lies,” he said, getting out of the chair. His body wobbled, as if his torso was not under his control. His left arm jerked out away from his body again as he reached for a sheet of paper in my hand.
I nodded, unsure of what to say. I knew he had recently learned of his diagnosis; saying “sorry” seemed empty and useless.
“Did they fire you before or after you learned you have Huntington’s Disease?” I asked.
“I was fired months and months ago, but my body was already starting to do all of this,” he answered, tossing himself back into the chair. His limbs did not rest when the rest of his body settled; they continued to move about as if controlled by a novice puppeteer. He sloppily wiped his eyes with the back of a hand before continuing, “No one in my family had this; I don’t understand why this is happening to me. No one—no one! I’ve never even heard of Huntington’s Disease! And now everyone is holding it against me—Microsoft, my family, my friends—but they all tell lies, they all tell lies. I speak only the truth. Only the truth.”
I breathed in sharply—I wanted to look away.
“I don’t understand what is happening to me,” he said, his voice becoming quiet. “I never wrote things like this before in the past—I was good at what I did. I’m changing. I never did this before—I worry that it will never go away.”
Oh God… he knows he’s losing his mind. He has insight.
“You have to help me,” he said, his right arm still twitching in his lap. My mind’s eye saw the strand of excess genetic material swirling off of his fourth chromosome, as if it was the animated tail of an exuberant kite. “I can’t go out there; people are going to think I’m a freak because I can’t stop moving; I’m going to get beat up and my stuff will get stolen and people will continue to lie about it all. I can’t do this anymore by myself.”
I tried to capture everything in that moment in my memory because I knew that, in a few months, his condition would likely be much worse. And I wanted at least one of us to remember him before he deteriorated further.
12 Feb 2007 |
whew. beautiful. stark. my heart freezes, burns, goes dead for a moment. thank you for writing this.
Comment by Joseph | 12 Feb 2007 @ 10:40pm
I clicked over to the wiki article and was struck by the contrast between the clinical-like list of signs & symptoms there versus the honest and heart-breaking perspective you’ve written here. Thank you for tying a person and emotions to this disease. Your writing does a lot of the spreading of knowledge or at least, awareness.
I don’t usually comment, I’m a big lurker on your blog :) but I just had to tell you how much this reader appreciates the perspective you bring to our blog world.
Comment by Anjum | 13 Feb 2007 @ 3:37am
Excellent writing. Devastating condition. Surprising that there was no family history. I wonder if he has had children.
Comment by Brad | 13 Feb 2007 @ 4:36am
This is so sad… I know someone who recently got genetically tested for Huntington’s as it’s in her family, and she appears destined for this sort of thing. Worse, she’s in the same field as you, so she knows all about it. It’s one thing to hear about it in terms of the symptoms, but a narrative like this is much more wrenching and real.
I think this has given me added perspective. Thank you.
Comment by Brock Tice | 13 Feb 2007 @ 5:32am
This brought tears to my eyes. I have a friend (a psych resident, like you are) who is positive for the Huntington’s gene. I think she would have preferred not to have been tested, but she wanted to know because of child-bearing and such.
It’s such a horrible disease…
(oh, I just now noticed that Brock made a reference to this same friend!)
Comment by misterbeans | 13 Feb 2007 @ 9:02am
Brad:
Huntington’s is a “trinucleotide repeat disease” meaning that there are too many repeats of a set of nucleotides (thus the CAG CAG CAG reference at the top). The thing is, there is a threshold of normal in terms of numbers of repeats. Men during spermatogenesis can expand their repeats. So my guess is that his father was just under the threshold of normal, but his sperm passed on enough repeats to be problematic… That’s one possibility as to why he could have it with no family history.
Comment by misterbeans | 13 Feb 2007 @ 9:05am
One of the things that I have read from someone who does genetic testing is that there is a certain percentage of families in which the child is, to use the term I recall, “discordant”. In other words, unbeknownst to the legal father, he’s not the biologic father. Another potential explanation.
Comment by Greg P | 13 Feb 2007 @ 6:29pm
Powerful writing. Love your blog.
Comment by Marc | 14 Feb 2007 @ 2:49pm
According to my genetics text book, spontaneous cases of Huntington’s disease are extremely rare, literally one in a million. The explanation by misterbeans is certainly plausible given the nature of the disease (a trinucleotide repeat expansion), but I’m leaning toward Greg P’s….
Comment by Brad | 14 Feb 2007 @ 4:01pm
Another lurker here, current first year medical student. Maria, please continue writing these beautiful observations of raw humanity - they honestly keep me going when I’m feeling sick of medical school. I hope I have a chance to work with residents as thoughtful and observant as you are when I do my clinical training.
As for the way this patient could have acquired HD: Huntington’s disease is inherited in a manner called “anticipation,” which means that the severity of the disease increases through different generations. As the HD gene is passed along through families, it acquired more and more of these CAG repeats. The number of CAG repeats in the huntingtin gene is directly correlated to the severity of disease: 36-41 repeats means someone may or may not get the disease; 40-55 means that someone will develop HD in their lifetime, more than 55 repeats lowers the age of onset of the disease. This patient could be unlucky enough to be the first in his family to inherit a pathogenic number of repeats.
Comment by Michael B | 14 Feb 2007 @ 9:10pm
Hey Maria, loved the line “My mind’s eye saw the strand of excess genetic material swirling off of his fourth chromosome, as if it was the animated tail of an exuberant kite”. You write so beautifully. Please keep up the raw, yet beautiful observations of the human condition and how it affects us physicians.
Comment by tschwagerl | 15 Feb 2007 @ 10:15am