As a person who is at risk of having HD, I have a relatively unique point of view. Knowing now for certain that my mother has the disease is both frightening and very sad. Knowing that I have a 50/50 shot at having the disease is not comforting. But the thought that really keeps me up at night is wondering if I have now passed this on to my innocent children. I don’t worry a lot about myself. Whatever happens to me happens; there is not much I can do about that. The thought that I have cursed my children not only to watch me suffer but also suffer themselves is almost unbearable. It is a situation that I’m not sure a lot of people understand.
I am certain that I will not be able to rest until I know for sure if I have HD, but answers are also terrifying. If I have it, I might not live to be 60. I may never see my sons get married. I might not ever have grandchildren, or if I do I may never see them. They might have this too and then I have not just cursed my children, but my children’s children as well. So many things go through your mind when the bright, long future you envisioned is put at risk. But then, my time could be up tomorrow or twenty years from now. Whenever my number gets called, it gets called.
My mindset about HD is different than my siblings or my father’s; they could have to watch me suffer through this, but they don’t have the added agony of wondering about the future generations too. This is why those who are at risk and caretakers need so much support, because the weight of the whole world feels like it’s on their shoulders. This is why more people need to be made aware of this disease and its effects, so that those who are suffering in silence right now can stand up and be met with kindness and support and empathy. That is what is needed. An understanding or at least empathetic shoulder to lean on when the weight of the world gets to be too much. My hope is that new research will at least make it more bearable for those who have HD, and that one day we will find a cure. That is the future I hope for: a world without Huntington’s Disease.
sleepdeprivedmommyoftwo 