Here’s the scene: My wife, Jill, and I are at Jill’s work. We’re on speakerphone with our daughter’s friend, who is at a hospital almost 1,000 miles away with three other friends and Lou, our daughter. (Lou is our daughter’s nickname.) The reason for the call is to listen in as Lou gets the results of her DNA test for Huntington’s. It’s a long-awaited appointment.
As we listen, we hear five college students on the other end of the line. They walk down the hallway, five young women on the verge of starting exciting new lives. Five brilliant, beautiful, strong women who are destined to change the world for the better.
As they walk into the meeting room, we hear several people, including the genetic counselor, a psychotherapist, and a social worker, greet them. Jill and I start to tense up. We’ve been down this road before; Jill faced a similar roomful of people last year when she heard that her genetic test was positive for Huntington’s.
The words we fear come again: Lou tested positive for the Huntington’s gene. Jill and I start to cry. Meanwhile, miles away, the room falls silent for what seems an eternity, and then we hear the genetic counselor ask Lou, “How do you feel?” She replies, “I’m hungry.” She doesn’t cry or fall apart.
The professionals ask Lou if she has any questions (she answers no), and if her friends would be with her that day (yes), and would they support her in the future (yes). They give her some options about future visits and tell her that this diagnosis used to be a death sentence, but there’s hope on the horizon.
Still no tears from Lou.
But there are plenty of tears from me and Jill. Our tears are for her, for us, and for our entire family. How will this diagnosis affect her now and in the future? Will she be able to find a way to deal with the consequences? Will this ruin or fuel her?
As Lou and her friends walk out of the room, we realize something rare is happening: All five of the girls are quiet. Quiet is unusual for them, as they are all normally a bubbly bunch, with lots to say. Even on the phone, we could feel their heaviness.
Another wave of sadness washes over me and Jill as we start to text family members. The news isn’t something you can prepare for, and it certainly isn’t something you want to share, but everyone wants to know. It takes four weeks for someone to get the results of the genetic test — four agonizing weeks when you don’t dare think about a negative outcome — so the wave of grief you feel almost drowns you.
Lou is legitimately hungry, so her friend who is holding the phone tells us Lou will call after they eat.
An hour later, she calls. She is composed and sounds just like herself. From the time we hung up after her appointment until she called, it felt like we didn’t take a breath, but as soon as we hear from her, we are calmer. She tells us that she is really sad, but she was ready for the diagnosis and, now that she knows for sure, she can stop worrying about it as an unknown factor in her life.
Her friends are all staying with her, and they have a lot of activities planned for that day and that weekend. They are all prepared to help her deal with her emotions any way she asks them to. Lou also tells us that nothing changes for her. She has tests to study for, a graduation to plan for, an apartment to find, and a new job to start in the summer.
As we end the call, we are once again reminded that our daughter is a force to be reckoned with; that she will continue to move forward; that she will graduate; that she will find an apartment; that she will be wonderful at her new job; and most importantly, that Huntington’s will not stop her.
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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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