Wednesday, July 2, 2014

Leaving a legacy

I have just got back from a convention that was all about leaving a legacy and how we will be remembered by the videos we post online.

There is an old saying that when we die, we die twice. Modern generations reclaim the saying with different words, but the basic premise is the same. We die when our bodies shrug off the mortal coil, but we don’t truly die until the last person who remembers us dies. I think the Internet has given us another way to live for a very long time, if not forever. Although there are a few famous people who have left legacies that have kept them alive, at least to some people, most people have passed through the world living until they died and then being forgotten within a generation or two.

On the Internet, we can leave our writing and our videos to capture our essence for the grandchildren we will never know, the friends we never had enough time with, and to comfort our loved ones when our early departure makes it hard for them to hold onto a world that shifts and slides. The hardest thing about a life-limiting illness is the milestones we will miss. We will not be there to be the handrails that our loved ones could hold onto when life gets too stormy. The videos and photo albums that I planned for some time in the future must all be done now. There is an urgency to post my advice, and document my life. Although I will probably miss their weddings, the birth of their children and all the big and little events of their lives that they share with me now, I can record how I want to be remembered by my children.

I don’t want the only memories to be of the mom who was afraid to ride the best Disney rides because her spine might fracture. I want them to remember when I was whitewater rafting, karate-kicking fearless.

Our legacies are not only in words and pictures.

I have taught thousands of students and written hundreds of letters of recommendation.  I have listened to stories of joy and sadness and shared the happiness and felt the pain long after the names have been forgotten. I have reached out to touch lives and advocated for those who did not have the power to have their voices heard. For each student I have helped to graduate, I have helped raise the socio-economic standard of a family.

Every day I put a capsule of MLN0128 in my mouth. It is a phase 1 trial. Phase 1 means no placebo but the dose and toxicity are being determined by the responses of me and another 125 women. There are some days that my body and I have a stand up fight to go on as the drug does it work. I would be lying if I did not admit that the side effects have got easier to bear now that I know it may be helping me, but they are no less brutal. But this is part of my legacy. If the drug helps a future generation of women, they will not know my name. I am grateful to all the unknown women who tested the drugs that have helped me.

Not all legacies are great. Not all are memories of your name. Sometimes it is just the unsung things that you do every day that tells the world you were here.

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