"I did some research." Cameron looks up at me from over a journal article she's reading. "I think we should try and get you on tetrabenazine."
I nod. I've read about it. Helpful in the reduction of chorea. "I don't want anyone at the hospital to know."
She smiles. I haven't shot her down yet and she's pleased. "I also looked up some specialists."
"Me too" I admit. There's no point in being in denial about this disease now.
"Dr. Pearl is taking patients." Cameron mentions tentatively.
"I called her this morning. I have an appointment on Wednesday." I come and sit down on the couch across from her, and hand her a glass of wine.
Cameron takes a deep breath. "I'm glad you're handling this so well." She looks away from me, embarrassed. "I heard what happened when you found out and…well…I'm just glad." It rushes out and she's afraid to look at me.
I reach out and tip her head up so she's looking at me. "There's more at stake now." I love to see her smile.
She reaches out to clink her glass with mine. "Cheers" she murmurs.
I rotate so I can lean against her. "I love you." I whisper.
She kisses me gently. "And I love you."
I finally call my dad and tell him what is happening to me. We talk. He says he's glad I have someone who cares about me given what I'm about to go through. I don't ask him to visit and he doesn't offer. When I hang up the phone I start to cry and can't stop. I don't know why.
Cameron sits beside me on the floor and holds me. Again I am the vulnerable one. It's not something I'm used to.
I let her pamper me. Her strong hands massage me as we lie together in the bubble bath she runs. She wraps me in a bathrobe and tucks me into the couch, bringing me pasta and wine. She lets me disconnect my brain for a few hours, emotions I can't deal with sliding over me instead of sinking in to cause pain. I just stop thinking.
When my brain reconnects I talk to her. I don't want to die, I want to live – live with her, like we have been. Happy. I don't want to slowly disintegrate until I can no longer control my body, until my brain no longer has control. One of the most common cause of death in Huntington's patients is choking. Smooth muscle stops contracting and you die coughing, gasping, unable to breath. Not a pretty way to go.
She tells me that we're all dying – it's a question of how fast. She tells me about research and how we can try to control my symptoms for as long as possible. We have good years left. She tells me not to be afraid; she'll be there until I stop breathing. She'll take care of me. She loves me no matter what.
Will I even know her at the end? Will I know anything? My mother didn't, at the end. She couldn't even talk.
It's here now. It's happening. I am paralysed by my fear.