Chapter 138 LOUISVILLE
Chapter 138 LOUISVILLE
The March appointment is on a Wednesday. We drive to Louisville together — Rook at the wheel, me in the passenger seat with the notebook open and the list of questions I have been compiling since January when he told me and that has grown to two pages because I am a journalist and I prepare for the rooms I am entering and this room I am entering for the first time with two years of catching up to do.
The specialist's name is Dr. Osei and she has been Rook's monitoring doctor since the Edinburgh referral forwarded his file to Louisville at his request when we moved back. She is fifty, precise, the kind of doctor who answers the question you asked rather than the question she would prefer you had asked, which makes her immediately the right doctor. She looks at me when Rook introduces me and she says: I am glad you are here. I have been suggesting your husband bring his wife to appointments for fourteen months. He says: I know. She says: good. Now we can all be in the same room.
She explains the condition. Not the Edinburgh version, which was the initial flagging and the early monitoring. The current version, which is two years of data and a clearer picture than anything Rook has summarised for me. The marker is a genetic variant affecting a neurological pathway — the same pathway that Dale's condition affects, expressing differently because the genetic variant interacts differently with Dale's age and history and the specific environmental factors of his life. In Rook the variant has been stable for two years. Stable means present and monitored, not progressive. The statistical models suggest it may remain stable indefinitely. They also suggest it may not. This is the honest version and Dr. Osei gives it directly and I write it in the notebook without softening it because softening it would be the wrong version of the information.
Then I ask my questions. All twenty-three of them, in the order I compiled them, because the order matters and I have thought about the order. Dr. Osei answers each one. Some of the answers are good. Some are uncertain. Some are the specific kind of medical answer that is not the answer you want and is the only honest one available. I write all of them.
The pregnancy question is the one I ask last. Not because it is least important — it is the most important to both of us right now — but because context matters and the context is everything that comes before it. I ask: what is the interaction between this condition and fatherhood. She says: in terms of the pregnancy itself, there is no interaction. The variant is not expressed in a way that affects fertility or the health of a pregnancy. She says: in terms of the child, the variant has a hereditary component. There is a statistical likelihood that a child of Rook's will carry the marker. The likelihood is not a certainty and carrying the marker is not the same as the condition expressing — most people with the marker have no clinical presentation. She says: what this means practically is that your child should be screened at adolescence. Not sooner. Not urgently. At the appropriate developmental stage when the information is useful and not frightening.
I write this down. I read it back. I look at Rook. He is looking at the desk rather than at me, which is how he receives information that is large and requires the structural engineer's process — take the full measure of the load before you respond to it. I wait. He looks up.
He says to Dr. Osei: when you say most people with the marker have no clinical presentation. She says: the majority. He says: what is the majority. She says: eighty-three percent in the current literature. He says: and of the seventeen percent who do present. She says: a range. Some present as Dale's condition. Some as other neurological differences. Some as nothing clinically significant. He says: and the monitoring. She says: same as yours. Early detection is the whole game with this variant. The people who do poorly are the ones who are not monitored. Your child will be monitored. That changes the picture significantly.
He nods. He looks at me. I look at him. We are in the same room with the same information and neither of us is managing it alone and the room is not comfortable but it is honest and honest is what we have always chosen when the choice was available.
I say to Dr. Osei: one more question. She says: yes. I say: is there anything about this condition that should change how we live. She looks at me for a moment. Then she says: no. She says: the monitoring continues, the lifestyle recommendations are the same as for anyone — the specific things that support neurological health, none of which are restrictions. She says: I have patients with this variant who are architects, engineers, writers, teachers. I have patients who run companies and raise families and do everything a person does. She says: the variant is part of your husband's picture. It is not the whole picture. The whole picture includes everything else he is, which is a great deal. She looks at Rook. I have been monitoring you for two years. In that time you have completed a significant engineering project, relocated internationally and back, and maintained what appears from every indicator to be a healthy and stable life. That is the whole picture. The variant is one element of it.
We drive home. The two hours are quiet in the way that is full of processing — both of us with the same information, both of us running it through the same question which is what does this mean for the life ahead, and both of us arriving at the same answer which is: the life ahead. The same life. Monitored. Eyes open. In the shared space.
Halfway home I reach across and put my hand on his on the wheel. He turns his hand over and holds mine. We drive the rest of the way like that. The answer is the same as it has always been. The life ahead. All of it. Together. Still choosing it. Every time.