Jacquelyn was thirty-two years old.
And she had known that she would die by thirty-five by the time she was twenty-one years old.
Huntington's Chorea is a hell of a disease. It tears not just your body but your mind to pieces. Amnesia, compulsive behavior, involuntary muscle movement, impaired speech, difficulty walking, paranoia, delirium, muscle loss- and no cure. Huntington's is manageable, but those with it all seem to head inevitably toward the same end.
Today, after Jacquelyn's brother assists her in brushing her teeth, her hair, tying her shoes and putting on her coat, she has physical therapy to attend.
She wonders if the physical therapy is worth it- it'll get her one, maybe two extra years at the best? And even then, how much time does the physical therapy consume that she could be using to spend her last few years enjoying life?
She used to love to ski. That's how she would want to spend her last few years, but there is no hope for a ski getaway now.
She feels trapped in her body, she feels trapped in her mind. She feels trapped in this damn jacket she wasn't even able to put on without help.
"Ready to go, Jackie?" her brother asks her.
She gives what may have been a nod if she had better control of her muscles.
