You’ll Miss Me When I’m Gone, by Rachel Lynn Solomon
You’ll Miss Me When I’m Gone is about twin sisters whose mother has Huntington’s disease.
It takes place during their senior year of high school. The sisters must decide whether to take a genetic test to learn if they will also develop Huntington’s disease and how they will deal with the results. Their dynamic family relationships grow and change throughout the story. Meanwhile they are learning about love and pursuing their dreams, one in music and the other in academics.
This is a great book!
I really enjoyed it and found it very engaging. It deals with a lot of deep issues without being overly heavy, which I really appreciate. It is considered a young adult book; I thought it was pretty intense for that genre in terms of sexuality and psychological issues (including suicidal ideation).
The book is a coming of age story (two coming of age stories intertwined), and the young women grapple with their complex identities, including religion, sexuality, passion/purpose, intellect, role in the family and health.
I don’t know how accurate the book is in terms of describing the symptoms and experience of Huntington’s disease.
It is always good to be reminded that while books and movies can be great at conveying a personal experience of living with illness and/or disability, they are not where we should go to learn specifics about those disabilities or medical issues.
Has anyone with Huntington’s reading this post read the book? What do you think about the way it is portrayed?
The story is told from the perspective of the sisters observing and caring for their mother, although there are a few places where the mother shares her own feelings and thoughts about it.
The story is not focused on disability empowerment/advocacy, but on the sisters figuring out who they are, and their family’s Huntington’s disease is an important part of their identities. While not overly negative, the book could have been more positive about living with Huntington’s.
There are times, when the young women are considering the possibility that they’ll develop symptoms, that they focus on all the things they want to do before the age when symptoms would usually start, as though all fulfilling life will stop at the appearance of the first symptom.
I think this is probably a pretty realistic portrayal of how the teenaged mind works, but I wish the book would have portrayed them realizing that life with Huntington’s disease would be different but still meaningful.
A lot of their mother’s experience is described in terms of what she can no longer do, rather than how she adapts and still enjoys life (like, there’s a lot of emphasis on how she has to retire from the teaching job she loves and not much mention of how she has more time for knitting, a hobby she also loves).
On the other hand, perhaps someone with Huntington’s disease would say that the book sugar coats how hard it is—I don’t know. Either way, the young women are believable as they struggle with the realities of their mother’s symptoms and the possibility that they will experience them in the future, and it is easy to feel empathy for them as they wrestle with how it may affect their lives. They are flawed, like we all are, but you root for them.
Overall, I highly recommend the book!
I’d really like to hear what someone affected by Huntington’s disease thinks about it.
Rae is a mom of three whose eyes were opened to the beautiful diverse disability community (that she previously ignored!) when her daughter was diagnosed with Down syndrome. She is learning to be an ally by listening to people with disabilities and reading/watching their books, blogs and movies, and by going to as many trainings as she can. Rae is a part time international public health practitioner who likes yoga, loves the beach, and used to cook (she never cleaned). She occasionally dabbles in textile arts.
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.