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.