Friday, April 28, 2006

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.


Vanessa said...

Hi Scott...I admire your decision to try to work on your "legacy project" but I can't help but worry that this race against time may overwhelm you. I am sure that the videos and gifts, however small, will mean a great deal to Eva in the future...but I just want to remind you that what may be even more important is for you to be able to slow give yourself "PEACE" days, when you won't have to do anything special other than being with your wife and allow your own heart a rest...and maybe your spirit will find, amid the peace, enough strength to carry on. My 20 years living in Africa taught me that we Americans need to slow down...There they understand that spending time with family and friends is important. When the hot sun starts to set, people spill onto their streets to visit with neighbors, watch their children play, dance to the drums...They work hard during the day in the fields, but they relish the nights and even though life expectancy in Africa isn't as long as the West, I've always suspected that they may have an edge over the West in quality. In Gambia, people don't celebrate birthdays. Even my husband isn't sure of his own...just that it was sometime during the rainy season. How many years a man has lived or how rich he has become isn't how people are judged there...but by how well he treated his family and neighbors. Time loses its importance in Africa. People live and die. But many, many Gambians pray twice a week, on Thursdays and Sundays, specifically for their ancestors. They believe, and I do now, that the prayers help their ancestors somehow and in turn, their ancestors watch over them. I know they mourn and grieve...I have heard the wails at night when a child succumbs to malaria...but they have managed to understand that it is all connected somehow...this cycle of life and death...and they go on. So if I may say so, work hard on your project Scott, but allow yourself time to be free. I've always told my kids that God gives us the dark night because He understands that we need rest. Allow yourself rest, Scott. Your body needs it. Your family needs you too right now and with rest, you will find that you can give them the love they need now...and that will carry them into the future. Take care...Love, Vanessa

Jim Dock said...


Have read some of the other entries on your site, but I found the most recent one had an interesting lead-in--"dying in slow motion". It compelled me to write a response and hope I've done this correctly.

I guess I feel from my older perspective that we are all dying is slow motion, some just slower than others. The "miracles of Modern medicine" have been keeping me alive for the past five years and have allowed me the opportunity to experience 7 surgeries 3 1/2 chemo treatments and 3 months in a coma, out of which I had to retrain all of my muscles, and relearn all of the body's functions--some of which aren't back yet! I tell you this not for commisseration on my plight but to let you know my subsequent comments are based on my having traveled a mental path you are now traversing as well.

I think as men we define our lives so differently than women do, it is impossible for them to understand our perspective on these things. Despite any evolutionary progress we may purport to have achieved, in the dark recesses of our id's we are still self-perceived as the hunter--the seeker--the protector--the provider and life force of our families. When faced with a life changing situtaion we may give up the traditional means of fulfilling these roles (e.g. our jobs, lawn mowing, car/bike repair, etc.) but we don't change our mind set regarding the need to fulfill those roles. We begin to look for other ways to make life simpler, easier, more comfortable, etc. for our loved ones. So I can readily relate to you desire to create a legacy for your self. I can understand you need to take care of those immediate tasks that need doing now and the wish to create "leave behinds" for your daughter to treasure as she grows up. We as men would do those sorts of things because we are "hunting" new ways to care for those we love. And regardless of our age, we feel cheated when we realize that we will not be able to spend more time with them to experience their lives.

But Scott, I will tell you a truth from my 60 year perspective that is as solid as your faith and as real as your love for your family. Regardless of what you leave behind, your daughter will learn the most about you--who you are--what kind of person you are--what makes you tick--from those in your extended family that will be with her as she grows. She will look into the eyes of a "teller" who will talk about you and she will see you through those eyes the love that "teller" has for you. It is in others that our real legacy is left and it will be through others that she will learn the essence of you. She will know you by the life you lived and how you lived it as told by others.

So go ahead and make your lists and create your tapes and buy your future gifts and write your thoughts while you can and share every moment possible expending your strength on those things that you, as a man, understand are important for you to accomplish. There is time for rest later. I would do the same. But when you find yourself frustrated with writers block, unable to think of a gift, confused about what to do next, try picking up a phone and calling someone you care about to see how their day is going--smile at a stranger--wink at a nurse--flirt with your wife--hug someone for no reason--tell a joke to somebody who needs a laugh--bring beer to a friend and drink them together. The memories of these little acts will be the basis of your real legacy forever. And I can assure you these things will be related repeatedly to your daughter in the years to come.

Life is a marvelous journey no matter its length--enjoy every moment of it.

JIm Dock