Wednesday, September 10, 2008


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.


Ana's World said...

Brava!!! Thinking of you every day. Ana

BonBon said...

I stumbled on to your blog about a week ago, when looking for something to make me feel better. I lost my Mom who was 44 years old to cancer almost 18 years ago. Just a month ago I lost my Dad who was my best friend, he was 65 years old and was killed in a farming accident. I'm having such a hard time in greiving, as I feel so robbed. I turned 43 last week, and found your blog about the same time. Thank you so much, as you are making me feel like I can go on. My thoughts and prayers are with you and your loved ones. Bonnie from MN

MJH said...

I believe I understood your reasoning why you're blogging about all this. It is along very similar vein that I begun blogging about my own life. Although yours may be more like leaving a written legacy for your children. Very few people know who I really am. I shudder at the thought of someone else raising my own girls so opposite of what I desired for them. I have realivity good health (if you don't consider sinusitis). I had touched death during brain bleeding when oldest was only 10 months old. That got me thinking about starting to write seriously. Xanga opportunity showed itself and the rest is history. Isn't it something in each of us all that wishes to be remembered "forever" and writing is an effort of that?

One of your faithful reader of few weeks (thanks to blurb in AOL).

Melissa said...

I happened to find your blog through a friend of a friend. You know, just looking for something new to read. It humbles me to be able to look into your life. Best wishes!

Ashley said...

Hi Michelle!
I don't know if you remember me, but I met you years ago through the Scleroderma Support Group meetings in Pleasanton, CA. My name is Ashley Kinney and I was diagnosed with scleroderma at 26 as well. MaryLou Hughes gave me your blog site, and I have been reading it faithfully. So many emotions fill my heart as I read your very eloquent blogs. First and foremost, you are an amazing woman and soooo very strong! I understand that this disease doesn't give us a choice....and we are perceived as strong because we are living with a very inconvenient disease to say the least. My motto is "it is what it is" because I'll likely never have an answer to why this disease presented itself in my body. ......but I also have those "what if's" creep up all the time over whether I could have fought off scleroderma if I didn't attend grad school in Boston and was potentially exposed to that one unknown enironmental toxin...., or if I didn't have as much sugar in my diet in my early 20s... or if I had controlled my stress better while in grad school. We'll never know, and I pray daily for continuerd stable health. I just want to thank you for your incredible honesty, sense of humor, and courage. You inspire me and give me faith that I will as well be able to face this disease with grace. God bless you and yours. Your children are blessed to have you as their mother. Keep your chin up! And I always look forward to your blogs.
With love and hugs,

Jen said...

You are such a brave woman. I have kept you and your family in my prayers since a friend sent me a link to your blog a few weeks ago.
I have since forwarded it off to everyone I know.
Thinking of you...

bethany said...


You inspire me in ways you'll never know. I think of you and your family every day and keep you in my nightly prayers.

Beth P.

judy said...

May you rest in Peace. My mother was diagnosed with scleroderma 2 years ago and it has been hard. It will get better. I love you from here to heaven.