My reasoning was that my dad, his dad, and his granddad all had Huntingtons.
This, of course, is not true.
Looking back, I clearlywantedto believe it was more common in men.
Emily Rekstis
My dad was diagnosed in his forties and passed away two days before his 58th birthday.
People with Huntingtons often die from infections, aspiration pneumonia, or even complications from falling.
My dads cause of death was cardiorespiratory failure, brought on by all the health issues surrounding his disease.
To me, this at-risk reality is like being forced to live in no mans land.
The whole 50/50 thing is so definitely not definite.
Its unsettling knowing what my exact odds are and that they dont lean one way or another.
The odds arent against me, but they arent in my favor either.
The uncertainty can be put to rest by a not-so-simple genetic test.
Talking about what they would do with a positive result, could they cope with that?
What about a negative result, because for some people that can be just as devastating.
If the person wishes to continue, he or she often moves on to a psychiatrist for an evaluation.
Here they will explore different coping mechanisms and ways to handle the diagnosis.
Theyre also going to explore if the person is coming in with anxiety or depression," says Goldman.
The last step in the protocol is the actual neurological exam and the DNA test.
Even after having their blood drawn, there are people who dont come for their results.
I thought there was no way I could live without knowing.
I figured if I tested negative, it would lift this huge weight off my shoulders.
If I tested positive, at least I could deal with it head on.
If Im being honest with myself, its probably because I got scared.
It still is at age 24.
I already lost a lot of my youth through a divorce and a sick parent.
To me, not knowing seems like my best option if I want to live a normal life.
If I decide to start a family, Ill probably get tested.
But until then, Id rather live with my 50/50 chance.
For me, I have found it best to fully embrace my at-risk status.
By acknowledging and owning it, I feel I am able to gain more control in an uncontrollable situation.
By being up front, I am able to (somewhat) avoid pity.
Its hard to pity someone who isnt hiding or ashamed.
Most importantly, sharing my reality helps spread awareness of the disease.
Theres no one clear way I can describe how it feels to have a 50/50 chance of Huntingtons.
Honesty, it depends on if Im having a glass-half-full or glass-half-empty kind of a day.
Overall, though, I feel sad.
I dont mean a dying end eitherwere all going to die.
I mean the life that I know as a loving friend, partner, daughter, and writer ending.
Because inevitably, if I do have HD, thats the reality I face.
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