Part 9:
Whitney
Where to begin.
Whitney has become the poster 'child' for this illness. We all know that. I knew that before coming out here. But in no way did it prepare me for being here in person, and the impact Whitney has had on me in person, despite having barely seen him.
It's a strange feeling, laying in bed and knowing that in another part of the house is Whitney, who cannot talk, eat, or communicate except for occasional, very limited contact (sign pantomime) with Janet or Ron. I am so close yet so far.
I was 'invited' to be in the corridor where Janet and Ron wait for Whitney to signal it is ok for them to come in and do the necessary tasks.
I can't explain why, but to see Ron, the world reknowned scientist, the gentle genius, sitting silently on a chair, peering in through a keyhole to watch and wait for a signal from Whitney really affected me.
The signal came, and both Janet and Ron went to action, silently. It appeared as if it were choreographed, the way that Janet and Ron worked, I imagine through sheer repetition. I watched from the hallway propped up by a cane, with warm tears rolling down my face, trying to keep absolutely silent. I couldn't help it, it hit so hard emotionally. The resilience Whitney has to endure the illness at such a severe level, every single day, is the definition of strength.
Almost as quickly as it had began it was over and the door closed again. I had to sit down and recover.
Later that week Whitney needed to be taken to hospital due to his J-Tube needing to be replaced.
I waited outside sitting in the back yard, adjacent to where Whitney was inside the house. There was complete silence apart from birdsong and the occasional leaf rustling. It was a beautiful, serene place to be.
The ambulance crew arrived and worked quietly. Whitney had been given Ativan to help with the trip.
Ron said smiling 'When he has Ativan, Its as if we go back four years. He can smile, joke-not laugh or talk-but he would if he could'.
I smile back, tears brimming. For a brief time, Dr Davis has a glimpse of his son back.
Whitney was brought out on the stretcher, and looked up skyward, with Janet, Ron and Ashley following as he was taken in the ambulance.
The procedure went as planned -after a long wait-and Whitney was brought back home, back to his room to which he is confined.
It's a stark contrast to the talented photographer-his beautiful photo's adorn Janet and Rons house as well as the walls at OMI- to see him this way in person. The descriptions from Janet of Whitney as a deep, creative, thoughtful, unconventional 'embracing the moment' kinda guy with a penchant for joking around.
But Whitney has a huge advantage. He has a father who is one of the brightest scientists in the world, in command of some of the smartest people I have ever met at the Genome Centre working 24/7 on curing him. He has a mother who is utterly devoted to him, who's love is so clear to see every single day I have been here. And he has Ashley, his wonderful sister who advocates and works behind the scenes to help get her big brother back. I have no doubt at all, that this will happen. Its the one thing I wish I could tell him.
