Working part time at a book store, I frequently come across books that I never would have found otherwise. I have shelves and shelves of them at home, waiting to be read. I recently stumbled across "Sick Girl" by Amy Silverstein and, after hesitating for fear it might hit too close to home, decided to give it a go. I was right. It was WAY too close to home.
The book is a memoir about a typical type-A law student who, at age 24, found her carefully planned out life in shambles due to an unexpected health crisis. After a period of misdiagnoses (far too common in women, even today) she discovers she has congestive heart failure, and must have a heart transplant.
When her transplant finally arrives and she struggles with a world that expects her to be unconditionally grateful at her good fortune and to pull herself up by the bootstraps despite the fact that she has simply traded one set of problems for another. She is misunderstood and isolated in her feelings, and struggles to portray to role of a "recovered" sick girl for the benefit of those around her. All the while, on the inside she faces the daunting and endless threat of rejection and a series of opportunistic infections and other physical side effects from the immunosuppressant drugs.
I really wish I had had the opportunity to read this book while Mom was still alive. I found myself realizing as I read it that I was just like the friends and family in the book-- well-intentioned people who inadvertently put insane amounts of pressure on the transplant recipient to "be normal" again. To be grateful for being alive and not muddy the waters with tales of shingles and annual heart biopsies and further illness.
Mom had her transplant at age 47, and as far as I was concerned was supposed to get another 20 years. I remember ONE number when we found out that she was going to have to have a heart transplant back in the winter of 1993-- that statistics showed that over 85% of heart transplants were still alive after 5 years. That's all we had at that point, since "routine" transplants had only been being done for about a decade at that point. I focused on the 85% alive, and the fact that what would happen beyond the 5 years was conveniently and definitively swept under the rug.
Mom always said that, despite the pain from the actual surgery, she woke up from the transplant feeling better than she had on months, maybe years. Did I stop paying attention then because I needed to take it that all was good? Did she feel "sick" every day--even after she was "healed"? I know there were complications that came along, but I always thought of those as occasional bumps along the way. Did I not ask because I didn't want to know the answer? My not asking, and not understanding, must have felt awful for her. Is that sort of sense of isolation what led to her depression?
In the book, Silverstein talks about facing the constant fear of "transplant artery disease" and rejection. Mom's official cause of death was listed as "chronic rejection of transplanted heart." When she started going downhill, the doctors told us that another transplant was inevitable. As the family member, my attitude was "fine, let's do it" even though I knew that the likelihood of it coming as fast as the first one (an unheard of 4 days on the list) was pretty slim. Also, I knew that mom had real misgivings of going through it all again. I wanted to beg her to fight, but I knew that she didn't have much fight left in her.
I did not like Amy Silverstein for a good part of the book. I guess I joined the ranks of her family and friends that just wanted her to be thankful and shut up about the rest. But I learned from her, and for that I appreciate her willingness to share all the ugliness that she experienced, in addition to what we are conditioned to call "the miracle of a heart-transplant." Reading this memoir provided an insight into what Mom must have been feeling during those 7 years, 10 months, and 3 days between her transplant and when she died.
I am grateful for that.
Here are a few passages that I found particularly powerful:
"The people closest to me, whose understanding would have been invaluable, could only run my ordeals through their own filters and then invent wildly far-fetched, impossibly upbeat conclusions that had no basis in my reality as a heart-transplant patient. Their creativity had more sting to it than they would ever realize, but I knew they called it up for a good cause: optimistic nonsense about my health situation made everyone feel so much better. Except for me."
" I love my family, but I can't live for them. Maybe that makes me a bad person, I don't know. But Scott [her husband] gets up every morning and goes to work, and my son goes to school. And I'm at home feeling sick. Or at the hospital. I can't just be this fixture that hangs around so the people I love can check in on me every now and then while they go along with their busy lives. Call me selfish, but I need to have some meaning besides living for other people."
Everyone who knows someone who has expereicned a transplant should read this book to understand their loved one's perspective a little better. It will be scary. It will make them worry about the future. But it is honest, and it will paint a realistic picture for them of what they may need to do to be more supportive and compassionate.
Here's a link to the Reader's Group Guide for the book.
Mom
3 comments:
Sick Girl was awful - I believe Amy to be wirter of fiction. "The Climb of My Life" by Kelly Perkins that just came out is a much better book than Sick Girl. Kelly is the same age as Amy, had her heart transplant at 34, but has an opposite experience. She too was on the brink of death and was ill for many years, but her world is filled with being positive and grateful. Kelly now climbs the tallest and most popular mountains around the world to inspire others. A heart transplant recipient climbing Mt. Fuji, Mt. Kilimanjaro, etc.? Yes, and it's a book all people should read.
I'll look for "The Climb of My Life." I certainly don't claim that Silverstein's experience was typical of all transplant recipients. But I thought the emotions she expressed have to be considered. Not everyone is going to bounce back and climb mountains. Some people struggle more with it. My main point in the review was that it made me realize some of the "dark side" of the experience that my mother may have goen through that I might not have been paying anough attention to notice. It should be noted that my Mom travelled to Switzerland within months of her transplant-- a HUGE accomplishment for her!
I just finished reading "Sick Girl" and I was sick and tired of all the wallowing in self pity by the time I got done that I almost didn't finish the book. What a whiner! My husband received a heart transplant on 1/6/90 after many years of living with cardiomyopathy. He was 39 years old at the time. He'd been sick since he was 7 years old with rheumatic fever, he had 3 open heart surgeries prior to his transplant (the first one at age 22, 3 months before we got married), a heart attack, a stroke, an aneurysm, arrhythmias, and an infection called subacute bacterial endocarditis that almost cost him his life - not to mention 6 months in the hospital on IV antibiotics. Over all these years, I've never heard one word of "why me." He's dealt with everything that's come his way with great faith, humor and dignity. I know he has bad days; days when he's so exhausted he can hardly put one foot in front of the other, but he's forever grateful to the donor family who have allowed him to see our sons graduate school, get married and give us 3 beautiful granddaughters. I'm very sorry for what Amy went through, but at least she didn't have financial worries as we did, and continue to have with the exorbitant cost of Mike's medications, but he would never in a million years considering "ending it all." We never got to go to Spain or go on a vacation every year to take our minds away from Mike's illness for even a short time. Every morning I wake up and check to make sure he's still breathing. Illnesses like this can either bring you closer together or crush you. We decided a long time ago that for however long we had together, we'd live our life to the fullest. In September we've been married 35 years, and Mike has been ill every single one of those years. The complications associated with transplantation don't go away, but you learn how to live with them the best way you can. Mike always told me that if something happened to him it wasn't because he stopped trying, it was because the doctors couldn't do anything for him anymore. Amy should adopt the same attitude and stop feeling so sorry for herself. Think of all the parents who spend months in the hospital with their child who's dying from cancer - now that is heartbreak. Get a grip Amy and be thankful for all the years you've had to be with your family and watch your beloved son grow up. Some people never get that chance.
Post a Comment