There is nothing pretty about the state I find myself in. For almost a year I have tried to fumble my way through the peculiar maze that is widowhood. I have joined a support group, joined an online support group, taken part in a study on grief that involved all kinds of ideas and methods for dealing with grief. I have put together fundraisers, walked far into the night going round and round in circles, walked the length of the Boston Marathon. I have tried to make this website work–have typed things and read things even on days I wanted to do no more than curl up in a ball somewhere and weep.

And I have studied this disease the way I once studied literature and writing and religion–studied it to the point that some days I want to scream in frustration for all the mistakes the latest knowledge now tells me we made. I have attempted to do what Jane and I always tried to do: turn no chance into a fighting chance–if not for her then for those who face similar challenges.

There are even days I feel like I am making a modicum of progress.

But just this very now I am in the teeth of the grief. It gnaws my bones each day because these were the last days of our life together. I have buried myself in yard work, in rearranging furniture and cleaning the basement, in doing whatever I can think of to avoid thinking about those days, this disease, and how difficult the path ahead is if we are truly going to begin to find answers to the multiple riddles NET clearly presents.

There have been days these past two weeks when it has all seemed far beyond my strength–and I have questioned whether or not doing any of this makes any sense. Someone said to me this weekend that Jane would kick my ass if I did not continue to do this. But the truth is I think she would kick my ass for doing it. One of the last things she said to me before she went into the hospital was that if she did not make it she wanted me to move on with my life. There are times all of this seems to be preventing me from doing that. The perpetual what-ifs make me crazy and trap me in a world that I do not like–and sometimes makes me a person I do not like being around.

And then I get a note like the one I got last week from someone who has NET and has found what is here useful–for whom the things we have learned since Jane’s diagnosis are making a substantial difference.

It makes me pause. We  helped someone. We helped someone who was living in the dark the way we were a year ago–We made their life just a little less dark.

So I need to keep doing what I am doing–even on those days when no one seems to be paying attention. I just have to find ways to do it without making myself even more crazy than I am.