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Author’s Reflection

These stories, following Michelle as she learns of her JHD diagnosis, were never meant to be demonstrative of a “typical” JHD or HD experience, as that does not exist, nor do they represent the experience of any one individual. Rather, their intent was to create a character with which readers could connect, and through her narrative begin to explore the complexities and injustices of JHD. Storytelling is one of the oldest modes of learning in existence, and through Michelle’s story I hope to bring forward themes with important implications for JHD and HD that will create greater awareness and empathy for those affected.

One such theme was the value of having a support network. In the first few stories, Michelle’s only support seems to be coming from Carley. However, the introduction of Dr. Miller brings in a character that Michelle learns to trust, and when she is to receive her genetic test results, she request for Dr. Miller to be there. The value of a compassionate doctor for someone with a diagnosis such as JHD cannot be undervalued, and Dr. Miller is an instrumental connection for Michelle to make early.

Another point of emphasis in these stories is the implication of JHD (and HD) as a genetic disorder. Michelle’s mom’s distress was not only due to her own diagnosis, but also to the fact that she had likely passed on the gene to her daughter. One consequence of her mother’s suicide is seen in the triggering of her father’s alcoholism to a point at which he is not able to care for Michelle, further breaking up her family. The issue of suicide is a serious one in the Huntington’s disease community; however, addressing the topic is crucial for the education and safety of those affected. In the second story, though Michelle does not yet know of her at-risk or gene-positive status, she is haunted by thoughts and dreams of her mother as she begins to show symptoms such as muscle rigidity, difficulty focusing, and mood swings. Though every case of JHD is unique, these symptoms are characteristic of JHD, and parallel those of Michelle’s mother as described by her aunt. Michelle’s thoughts and dreams about her mother serve to foreshadow the implications of the physical and behavior changes we begin to notice at this point in the stories.

The issue of genetic testing is commonly addressed in media, pop culture, and academia. Ultimately, Michelle decides to undergo genetic testing because, for her, not knowing her gene status would be the greater torture. However, an important note to make is that she makes this decision without any consideration for whether there may be others affected by her knowledge. Typically, the weight of knowing one’s gene status falls not only on the shoulders of the at-risk individual, but also those of every close family member. Michelle’s lack of acknowledgement as to how her gene status might affect her father, aunt, or uncle shows her disconnect from them. However, the one person Michelle claims as closest to her, Carley, is also not considered when Michelle makes the decision to get tested. Some would argue this is selfishness on Michelle’s part, but the level of support that Carley provides throughout shows her respect for Michelle’s autonomy in making this decision.

Finally, the process of testing for Michelle is done in a respectful, sensitive manner that unfortunately not every at-risk individual has access to, but that should be strived towards. Spreading the process out over several appointments with multiple individuals, the Duke Neurological Disorders Clinic(1) shows an attention to education, compassion, and discretion that is important for all medical proceedings but especially for the process of JHD/HD genetic testing. In particular, both Michelle’s genetic counselor and doctor offer multiple opportunities for discussion about her desire to know her gene status. In addition, they are transparent about the process, as well as the potential implications, of learning her gene status. Up until the very last appointment, they continuously check-in to make sure that Michelle is confident in her desire to receive the information.

In conclusion, these stories were not written to sugar coat JHD, however they are also not meant to be absent of hope. JHD and HD are diseases that ravage the minds, bodies, families, and communities of those affected. However, the strength, compassion, and as Michelle shows, love, within the HD community is amazing. Michelle faces losing everything that she had previously identified herself with to JHD— strength, independence, running, and freedom. However as the series arches to an end, she begins to take moments of pause to think about the implications of her diagnosis and tries to savor the small moments of joy, freedom, and love left to her. I hope that in these stories I was able to at least partially convey both the pain that Michelle goes through as well as the strength she exhibits in the face of JHD.

 

  1. Disclaimer: I have never visited, but The Duke Neurological Disorders Clinic is an Huntington’s Disease Society of America Center of Excellence.

 

 

 

 

 

 

 

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