Living With The End In Mind

Dying in slow motion is not without fringe benefits. I received the gift of foresight into my eventual death. While I would gladly return it if I could, this gift allows me to not only prepare, but as a good friend likes to say, to live the rest of my life “on purpose.”

Amidst the shock of my diagnosis, all thoughts and emotions boiled down to one thing: What about my wife and child? According to doctors, I would make my wife a widow before she was 30, and my daughter would grow up with no memory of her father. I felt sad, frustrated, desperate, and angry. While I accept that ALS is not my fault, I also feel a tremendous amount of guilt.

To help alleviate such feelings, I made plans to record video of myself. I would talk about everything: my childhood, school, hobbies, career, family, friends, marriage. Most importantly, I would talk about fatherhood. I would do and say everything I could to be a virtual father for my daughter when I was gone.

Around the same time, Kirsten discovered a book featured by Oprah Winfrey called Living with the End in Mind. It was written by Erin Kramp and her husband Doug as a checklist for anyone wanting to proactively prepare for death. Erin had terminal cancer and wanted to instill a sense of heritage in her 5-year-old daughter Peyton. Erin has since passed away, but she left Peyton hundreds of video tapes and heirlooms to remember her by.

I now have my own checklist. I call it my Legacy Project. It includes mundane items such as creating wills, funeral and burial arrangements, financial plans, other legal mumbo-jumbo. These are unfinished things I tend to avoid, but I want them to be taken care of in advance, to reduce the logistical stress on my family when I die.

The rest of the items on my list, such as creating videos for my daughter, are far more important and challenging. This blog included. I’m also keeping a handwritten journal to process more private emotions, for Eva to read when she’s older. I’ve started gathering birthday and Christmas presents in advance for her, a difficult task. It’s hard to imagine what she will like in the future. I’m organizing photos and other keepsakes as well. I’m also recording my voice via computer, saying everything from, “I love you!” to “More beer in my feeding tube please!” I can use it with speech software when I lose my ability to talk.

Ultimately, I just want Eva to know her dad. More importantly, I want her to know how much her dad loves her and always will. Family and friends, you have a part to play here too. When I'm gone, I am counting on you to help instill a sense of who I am in my daughter. She’ll need others to rely on in my absence.

This project often feels like an enormous undertaking. A poor substitute for the real thing. I’m trying to have fun with it, but I’ve made sporadic progress. Many days I’d rather lock myself in a closet and pretend it will all go away. The thought of not being there for my wife and daughter is simply too much to bear.

Some may see my checklist as a focus on death. It’s not. It’s my way of learning to embrace my mortality and work through all the related thoughts and emotions. It’s about standing up and doing something about my situation. It’s about telling the world that I was here. And it’s like an insurance policy. I hope to one day look through it all with my daughter and laugh. It’s a project that will never be truly finished. But by preparing for my inevitable death, I can get on with living.

Ballyhoo

The standard estimate is 30,000. I’m so sick of hearing it. We have 30,000 people in the U.S. with ALS. The truth is, we don’t really have a clue. We cobbled together that number with scant data, using widely disparate sources, from the ether that is our medical system. What good has it done? Seems to me it only deepens the perception of ALS as an orphan disease.

Sure, ALS is rare. But it kills quickly. Saying there are only 30,000 people living with ALS is akin to counting up the number of people who currently suffer from a fatal car accident. I’ll leave the math to you.

Earlier this year Congress passed the 2006 Health & Human Services (HHS) budget, which included $900,000 to start a nationwide ALS registry. Intended to jumpstart the ALS Registry Act, the amount approved is a fraction of the estimated $25 million needed to create a way to track the prevalence of ALS in the U.S. Such a registry would not only provide more accurate numbers about age, race, and gender, it would help identify environmental and genetic factors and connect patients with better targeted clinical trials. It’s a stepping stone toward a cure.

Hope is on the way right? Guess again. Not long after the Center for Disease Control (CDC) was told to allocate the money, President Bush eliminated the project in his 2007 HHS budget proposal. The registry was not the only victim of course. Bush slashed over $1.5 billion in similar programs designed to improve the health of our citizens.

Needless to say, those of us advocating for ALS are deeply disappointed. Despite sponsorship by 96 senators and representatives (69 Democrats, 26 Republicans, 1 Independent), the effort to implement the ALS Registry Act has suffered a major setback.

But hey, we’ve got $900,000 to blow this year right? Better make it count. Just a drop in the bucket really. Probably costs more to fly Air Force One to a political rally. Or to convene congress for a single patient. Or to drop an extra bomb on an Iraqi village. More literal bang for our buck.

Am I a little bitter? Yah you betcha’. I see us spending over $150 million a day in Iraq and I wonder. I wonder if perhaps this administration’s self-proclaimed goal of “compassionate conservatism” is just so much ballyhoo. So is my ranting here about it I suppose, for all the good it will do.