Yesterday a lengthy sampling of readers' E-mails appeared in this space. They came from members of the transplant community—transplant patients or someone whose child, significant other, or parent has received a transplant. The E-mails followed my September 21 post about Amy Silverstein and Sick Girl, her new book about the harsher realities of post-transplant life as someone who has lived with a donor heart for 17 years. (An excerpt from the book appears in this week's issue of U.S. News and is also posted on our website.) Considering the personal stake in an emotional topic grounded in deaths that save lives, it isn't surprising that most of the writers were puzzled, sad, or angry. A few worried that the book might put off someone who might otherwise have signed a donor card. Silverstein took up my offer to respond to those who wrote. Her reply appears below. —Avery Comarow
I understand and appreciate the sentiments expressed in many of the responses to Avery Comarow's blog.
What I have done in my book is express an honest but perhaps unconventional view of living with chronic illness—in my case, post-transplant. I did not expect that I would be criticized, and sometimes vehemently attacked, for being "ungrateful."
I will say this here and forever with as much frankness and true emotion as I expressed in my book: I am grateful. My goodness, I am enormously thankful for my donor organ, for the love of family and friends, and for the support of doctors. When I wake each morning and open my eyes, my first feeling is one of relief for being alive—and this is quickly followed by genuine thankfulness for it. Then I get up, take a handful of medications, and carry out another day of post-transplant illness. But carry it out I do—and with strength, courage, and resolve to push through the unending physical challenges of my transplant body.
Do I feel angry sometimes? Do I feel at my wits' end when the post-transplant illnesses pile up and hit hard? Do I at times give in to resentment that I got sick at the age of 24 and have not lived a well day since my surgery? Yes, I do. And my book shows it—without sugarcoating. I am not always able to contain how hard it is for me. But regardless of my loss of grace and composure at times, my gratefulness for my beating transplanted heart is always steady and present.
Some bloggers find this hard to believe. How can I be grateful and yet complain? Well, gratitude is not a simple concept, nor is it an all-or-nothing sentiment. I would think that most any person living with chronic illness, post-transplant or otherwise, lives with a combination of gratitude and struggle. To suffer and to have a difficult time abiding endless illness does not erase gratitude. Nor does a transplant patient who gives voice to the frustration associated with chronic illness in any way discount the profound appreciation for the donor that gave life.
Will folks be less likely to donate if they know that I live with post-transplant illness that is sometimes overwhelming and difficult? I believe that many who read my book will be able to see that transplant gives life—even with the medical problems that accompany it. They will see my story and understand that I was just tiny steps from death and was saved by one thing and one thing only: a wonderful, miraculously donated heart. They will also see that in spite of my range of emotions about living sick in my post-transplant years, still I have been given life and have tried my very best not to waste a single glorious heartbeat—no matter how ill I have felt. I have pulled myself up and out the door—to finish law school, to marry, to be a mother, a friend, a daughter, a member of my community. They will see a life worth living, and a gift worth giving. They will also see a transplant recipient who has done her very best to live a life worthy of the unimaginable gift that has been bestowed by her organ donor.
It is possible to be hugely grateful and also be suffering. I have tried to be a proponent of the lifesaving fact of heart transplantation and yet also be an honest reporter of how it is for me to live the miracle. —Amy Silverstein