Coming Clean

Edited from original version dated january 2008

I was trying to figure out why I am sending these essays out into the blogosphere. Writing them certainly helps me process my experiences and feelings, but why share this with everyone else? People often ask me about my health and I want to share my story, but there is more going on then can be reasonably included in one conversation. And I never really know how much information is too much. I don’t want to be a bore or a killjoy so, over the years, I have tended to keep a great deal to myself. I now find that I just cannot contain everything that I am feeling, and the only way to manage this kind of emotional storm is to get it down on paper.

But it’s more than sharing the details and keeping people up to date. I am dying. At first I thought it was happening slowly, but over the last few weeks it seems like I have boarded a rapidily moving train: the VVF to death. I feel like I am in a race against time. I have so many things left to do.

I try to cram in as much information as possible. I’ve already taught the kids about sex and their bodies. I teach them how to cook: “put a lid on the pot it will boil faster,” “don’t salt the beans they will never soften,” “nearly every baked good needs salt even if the recipe doesn’t call for it,” and on and on. One night, after Bill made a particularly funny joke at the table, I asked Amelia, “Do you know why I married your dad?” She shook her head from side to side. “Because he made me laugh,” I replied then added, “And he was a good man. I knew I he would never hurt me. Amelia, looks fade, but true goodness and a well-developed sense of humor never go away.” There is no way for her eight-year old brain to grasp what I am saying to her. I just hope the words stay with her until the time that she can understand them.

Our lives have a running narrative of lessons; I hope they are listening. There are so many things that I want to teach them. So many things left to do before they are ready for me to go, before I am ready to go.

But, who am I kidding? They will never be ready and neither will I.

I will be 39 years old next Friday -- almost middle-aged -- and, yet, I call my mother when I am sick. I crave her embrace when I am feeling my worst or the world has been unkind. Bill tries to comfort me, but often she is the only voice I want to hear. When do you stop needing your mother? When would it be ok to go? Will I ever feel like I have done my job and that I will not leave my children unanchored in the world?

This is what it is like to be dying. I try so hard to be present in the moment. I try not to let my death be so much a part of my life. But it seeps into every crack and crevice. It’s always there not a figure carrying a scythe but a feeling of loss and sadness. I suppose it sounds like depression but I cannot imagine that this is merely misfiring neurotransmitters. Rather I suspect this is how dying is supposed to feel: an acute awareness of everything that you and your loved ones have and will lose when you pass away. Every moment is simultaneously beautiful and painful.

I have spent much of the last 10 years of my life thinking about dying. I have done much of this privately though I have certainly had moments in which my internal struggle boiled over into interactions with others. Until recently, my thoughts about my own death have been largely unspoken or shared only with Bill. And now I feel as though I need to come clean and tell everyone the truth. Dying sucks. Sure, I have been given insight into how precious life is. And I have learned to cherish life’s little details. I think I have become a better person for it. But the price is really high. It’s not just the, “Geez, I’m going to be robbed of a good 40 years of living” but all the small losses that the dying process brings. It’s the inability to open a jar that derails a lunch that I looked forward to all morning. It’s the inability to lift my voice in song at church as I have done since I was an 8-year old child in the choir loft of St. Dominic’s. It’s letting go of my dreams of seeing the children graduating from college, marrying and having children of their own. It’s letting go of the daydream of swinging on a porch swing side-by-side with Bill and resting my head on his shoulder long after his red hair has turned white.

I was once on UNC’s main campus and saw a group of touring seniors and their parents. I wasn’t feeling especially sad that day, but at the sight of those prospective students I was overwhelmed enough to duck into the nearest bathroom and dissolve into a fit of tears. All I could see was Bill, alone with Amelia or Aidan. I should be there, but, in all likelihood, I will not. I am sad for me, but I am much, much sadder for the kids. It’s so unfair though it could certainly be worse. Like we tell the kids, “You get what you get and you don’t fuss or fit.” Easier said than done.

Why tell you all this? Misery loves company? I don’t think that is it although I feel less alone when I tell my friends how I am feeling. What I really want to say to all of you is go outside and run. Feel the wind in your hair and the cool air on your cheeks. Run until you feel tired and then be grateful your body lets you do that. Sing at the top if your lungs (even if you sing as badly as Bill does), dance in your bedroom, take the trip that you are dying to take, do the things that make you happy, etc. Bill’s grandfather lived to be 89 and was healthy enough to bike and golf until the last few months of his life; few people are that lucky. Someday you may not be able to do the things that you love so make sure you do them now, while you can. Everything we all said in the days after 9/11, all the promises that we made – spoken or unspoken – need to be made good on. Enjoy the ride folks just in case we only get one go around.

Personally, reincarnation is looking better and better as long as I get a good gig next time. I’d like to put in an order to be a golden retriever at a reputable breeder in the United States. That way I can get adopted into a good home and eat, sleep and play (my three favorite things) all day. Of course, I’d have to shit outside, but I can accept that.