Kerry Eldred, who lives in Jacksonville, Florida, tested positive for Huntington’s disease in 2009. She offers valuable advice on maintaining identity through difficult Huntington’s symptoms.
Transcript
People need to know that they are not their symptoms. Sometimes people get upset with me and, “You do this, and you do this.” And it’s like, I know, and I’m sorry, but it’s not me. I can’t help it. I can’t even see what’s happening.
I just know that I feel agitated or I feel like scared or I’m anxious, anxious, anxious. And so, everything’s making me freak out. So, I’ve got to go somewhere quiet.
And then I have to tell myself that too. Like, you are not these symptoms. You are Kerry Eldred — well, my full name. I would say that and then “You did this and you did that, and you did all this other stuff.” Do not let this take you away.
And that’s, yeah, that’s what they’re like. I’m going to cry because that’s what Huntington’s does — it takes people away. I have known so many people taken by the disease.
They will still look back and they’ll say, “She got so mean.” And she was — like I had an aunt that was very, very mean and would scream at you. And like if she had a way that she thought you needed to walk in the grocery store, like which aisles, and if you went different aisles, she would scream at you in the grocery store, but she never communicated that, you know.
So, I guess what people could do beforehand, if there’s stuff that makes them — if they notice there are things that set them off, if they could write all their triggers, you know? I don’t know.
Because sometimes I just learn them and it’s like, I should write this down under a list of triggers so that people know that chaos, anger — like being screamed at — like, I can’t, I can’t be screamed at. It’s like, I can’t, I want to abort, from the planet when I’m getting screamed at.
So. Yes, writing. I mean, if writing doesn’t work, you film. Whatever you can do to get yourself represented before you can’t do it yourself.
