For those of you reading this blog for the first time today after learning about it in Health Affairs, “Welcome.” I thought I’d provide a little blog background today for new visitors.
Why read the diary of a dying young woman, the mother of two small children, someone with a loving marriage, a successful career, and an army of loving friends and family? Why read the story of someone who is about to lose everything, someone who is watching her life slip uncontrollably through her hands like sand from an hourglass that shattered, setting a life on a wholly unpredictable and unfortunate course? Why share that sadness? Why share her hopes, especially those that are eventually dashed? Why eavesdrop on the heart wrenching discussions between this mother and her children when they brave the reality that she is leaving them? Why be a voyeur into a marriage where “in sickness and in health” is not a promise but a daily reality?
I am this dying mother, wife, daughter, friend, sister. I assure you that I am no one special. I am simply a woman facing a premature death and learning, day by day, how to balance hope and reality; how to laugh through my tears; how to find joy despite my shattered heart and my anxious mind. Why read my diary? Because I am just like you. It just so happens that I am currently facing the grim reality of my own mortality forty years ahead of schedule.
After a decade of truly living with scleroderma, I have grown increasingly ill over the past 18 months. As a result of medication side effects and four months of chemotherapy, I lost 19 of my 95 pounds in 13 months. I had a feeding tube placed in hopes it would help me gain back the weight; it created far more problems than it solved and was removed after four months. I am now on total parental nutrition (TPN), which meets all my caloric demands through my blood stream. The TPN will likely extend my life, potentially for years, and hopefully improve my quality of life as well.
The fallout from my medical crisis has been significant. Imagine living a life where death feels just around the corner. For me it has been a physically and mentally bruising battle, one that often made me wish for death because I was so tired of fighting. But then I would look at my kids and step back in the proverbial ring. My husband has the difficult job of managing my health care, being an optimistic cheerleader, and still addressing his own grief. And my children worry that they are losing their mother long before they are ready to let her go.
I know it all sounds very depressing. I can assure you that it is not. Ours is an incredibly rich and sweet life. Yes, we cry often, but we laugh more. We make memories, intentionally, every day. We don’t do it with photos or videos, though we should do a little more of that for posterity’s sake, we do it by being truly present in the moment: by planning a picnic and lying out in the sunshine with bagels and cream cheese, playing Three Bill Goats Gruff under a bridge, blowing bubbles.
I have learned that fighting for your life is hard work but, with an open heart, it brings a multitude of gifts. My family and I learn from this struggle every day, and it has brought us closer than I ever dreamed possible. And we have learned to find humor in absolutely everything.
This blog is a collection of personal essays about my experiences as a somewhat typical parent in the face of a difficult present and an uncertain future. One evening my husband and I were at the kitchen table joking about the idea of making these essays into a book. “Maybe Amazon could bundle it with a six month supply of the antidepressants of the person’s choice,” I suggested and we laughed over our bowls of soup. But, honestly, I don’t think the blog is sad. I think is it a candid, open, and real diary of a life in the balance, peppered with humor without resisting the inherent pathos of the subject.
In this life we all share only two things in common with absolute certainty: birth and death. C.S. Lewis supposedly observed that we “read to know that we are not alone.” My dream and hope is that in this blog I will not only making the sick and the dying feel less alone but also making the living more fully aware of the precious gift they experience every day: to feel the ease of the breath moving in and out of their lungs, to notice the freckles on their children’s faces, to look at their loved ones more intently. And if reading the blog means they waffle between sobbing and laughing out loud, then I accomplished my goal because truly living means feeling everything, all the way.