November 8, 1999
Timmi’s transplant is presently planned for about the end of November, and we are trying now to plan activities that can keep her busy in the hospital, to the extent that she feels well enough for activity. In that context, if there is anyone out there who has or knows of someone who has a laptop computer to lend Timmi to use in the hospital, we would be very grateful indeed. It would be preferable for the laptop to have Internet capability, but this is not absolutely necessary. If such a machine exists out there and is available for Timmi, please let me know by email.
Thanks very much – S.
November 18, 2004
Earlier this week, I went to the hospital to visit a friend and colleague of mine who had just had a baby. This kind of visit is the best possible reason to come to a hospital. When I first walked into the ward, I felt a little lift. The rooms and corridors were filled with mothers, babies and their admiring visitors, and with a kind of festive atmosphere that can't be found elsewhere in the building. It was encouraging to be surrounded by so much new life!
The visit went very well, with my friend looking happy and energetic and her sweet baby girl sleeping peacefully. At some point, though, I became aware of a certain gnawing feeling in my stomach, which grew as time passed during the visit. At first, I put it down to tiredness (I’ve not been sleeping well recently, again) and general nervousness about the work I needed to finish when I got back to the office. Then, I thought that perhaps I was feeling claustrophobic due to the crowded conditions on the ward – three beds to a rather small room, separated by curtains so that it feels as if each bed is in a narrow booth. But finally it struck me that the room reminded me far too vividly of the many hospital rooms in which Timmi passed so much of her time during the six-plus years of her illness. And I also realized that ten years ago – almost to the day – Timmi was first confined for tests at this very same hospital.
Since that visit to see my friend and her baby, I’ve sat here at my computer every day, sometimes twice a day, and tried to write about Timmi’s and our family’s experiences in the hospital. Timmi spent at least eight months altogether living in the pediatric cancer ward, and weeks at a time spending the whole day in the hospital before returning home to sleep. She and other members of the family spent so much time there that the hospital became, in a sense, a parallel universe for us, a kind of alternative reality. And there’s much to tell about that “other life.” There’s the way time became distorted after a few hours, and even more so after a few days. There’s the way Timmi’s life shrank to the proportions of a bed, a chair and a small hospital chest-table – all squeezed between curtains on each side and, when she wanted privacy, at the foot of the bed. There are all the strangers with whom we were suddenly involved – doctors, nurses, social workers, volunteers, you name it. I could go on and on.
Or, I should theoretically be able to go on and on. I want very much to use my mind and my language to grasp and describe the overall picture, to find some kind of meaning in our experience of living for such long periods suspended between two worlds – the “normal” one and its hospital alternate. But I find myself unable to think about anything except disconnected incidents here and there. I can’t seem to make sense of the experience as a whole. When I sit down to write, a kind of fog creeps over my mind and the words refuse to come. Why? Is it possible that the hospital became such a way of life for us that there’s nothing remarkable to write about it? But that can’t be right. Life was so different “inside” than it is “outside,” and I know for sure that there are many, many facets of that experience to describe, and even more stories to tell.
No, what’s really happening is that my mind is fogging over as a way of refusing to go back there.
I know this fog intimately; it’s where I spent most of my time in the months following Timmi’s death. It comes together with a feeling of fatigue, with that gnawing in my stomach, and with a physical uneasiness that I find hard to describe, other than to say that it feels as though I’m filled with something that desperately wants to escape. I suppose that something is the part of me that still hopes that one day I'll wake up and realize that it was all just a bad dream – that Timmi never got sick, never spent all those years undergoing painful, traumatic and exhausting treatments, and never died. I don’t want to have these memories. I just want to have her back with me.
I need to cry right now, but I can’t. In the same way that my memory has fogged over, my tear ducts seem to have frozen. It’s too painful to sit and remember, and it’s too scary to start crying – the tears might just go on forever.
So I guess I’ll have to write the stories, and the descriptions, and my five-years-later analysis of the hospital and what it was for us, bit by bit as things come up in other contexts. I guess I still have a long way to go before I’ll be able to look at my memories of all that time in the hospital as a whole, integrate them into my present life, and make some kind of sense of it all. More likely – or at least that’s the way it feels now – I won’t ever be able to do that. I don't think that human language can make those experiences into a consistent narrative, and I believe the human mind can't grasp their essential meaning – because they really do not make sense.