Guilt, stigma, and Huntington’s Disease

Huntington’s disease is a neurological illness that slowly robs the individual of their ability to walk, talk, think, and reason. There is currently no cure and life expectancy after symptom onset is about 10-20 years. Every child with an affected parent has a 50% chance of inheriting the same disease. It is a nightmare for all those impacted.

My mum was diagnosed in 2003 after years of experiencing strange behavioral symptoms. I was nine years old at the time. Over the next few years, her loss of motor control and emotional regulation became all too consuming in our lives. She was quickly deteriorating from the increasing rate of neuronal death in her brain. Even worse, I spent these same years wondering if I would inherit the same disease. (Note: I did indeed test a few years later. To learn more about the process, click here.)

For 12 year olds, parents are already embarrassing enough. My mum was an entirely different story. Going out in public with my mum was an absolute ordeal, to no fault of her own. Her chorea, or uncontrolled dance-like movement, was fairly severe and people constantly stared at us in malls, restaurants, parks, everywhere. I hated it when my mum came out in public with us.

A few months ago, a friend of mine in the Huntington’s Disease community posted this story to her Newsfeed.

While a seemingly inconsequential matter in the lives of many, I found my heart sinking as I recalled one of the most painful memories of my mum’s Huntington’s Disease experience.

At this point, my mum lived with my grandmother. Her symptoms were developing quickly and going out was logistically challenging. However, true to my mum’s character, that didn’t stop her from going out. One day, she asked me and my brother if we wanted to go to the movie theaters with her to see the new Willy Wonka movie. Both of us vehemently refused the opportunity. My grandmother pulled me aside, reminding me that these opportunities with my mum were limited.

My mum in the early years of her disease progression

She knew I was embarrassed by her in public and told me that if anybody stared, I stare back and refuse to look away. While her advice on staring didn’t float with a shy kid like myself, I realized how sad my mum would be if both her kids turned her down. I agreed to go.

The two of us sat together in the very back of the theater, as far away from others as possible. However, a family sat right in front of us, right at the brunt of my mum’s wayward kicking legs. For a full hour and a half, this family decided to throw some serious shade at us in that dark theater. The act of staring back doesn’t feel so effective when you’re being blinded by a discriminatory gaze. Instead of moving, they decided to complain to one another within ear shot.

To this day, I remember that experience in the theater. I remember the extreme guilt I felt at nearly turning down the opportunity and still feel it often today. I am mad at myself that my mum’s excitement and desire to be with me was not enough to overcome the fear of judgement from others who had no right to stare. But I was 12 years old. I give myself some slack from time to time, but it is not always enough.

A few months before my mum passed away

Today, I invest much of my time into distributing my documentary on genetic testing, working for the Huntington’s Outreach Project for Education at Stanford, and collaborating as a board member with the Huntington’s Disease Youth Organisation. All of these projects strive to educate the world about Huntington’s disease because a more educated world is one that is less likely to stare at an individual with chorea. That world is less likely to make fun of your professor who curls his toes as a result of his movement disorder. That world helps one another understand that people with neurological disorders are people first, and that they deserve to be treated with respect and dignity, no matter how many times they accidentally kick your seat at the movie theater.

To hear a story like the one above, a man being asked to leave as he tries to enjoy a movie in public, devastates me because ten years after my experience, this type of misunderstanding is still happening and it is something that we HD families, especially kids, remember forever.

This is to serve as a challenge to the world. How do you react to somebody with noticeably different physical features or movements than you? Do you stare? Do you ask for information? Do you respond to rude comments made by others? How do you ensure a 12 year old will never reject her mother’s invitation to the movie theater for fear of judgement by others?

Huntington’s Disease is devastating enough; we don’t need the world punishing us too.