Invisible Sisters is a story about growing up with two sisters who died of blood disorders and then how it affected you and your family over the ensuing decades. First, I'd like to get a sense of the birth order of you and your sisters and the events leading up to and causing their deaths.
I am the oldest of three sisters, and by the time I was 32, was the only one living. My sister Susie died of leukemia when she was 8, and I was 10. Our little sister Sarah was 4 at the time; Sarah had been diagnosed before she was a year old with a rare, congenital white blood cell disorder called Kostmann’s Syndrome. She died when she was 27 and I was 32. My mother called these two illnesses, which have, as far as I know, never been seen in one family, in one generation, a “reverse miracle.” This wasn’t a “movie of the week” kind of scenario – when my sisters were well, they were just like any other kids, and throughout her illness, Sarah alternated between regular kid-hood and long periods of hospitalization, sometimes for simple things like infections that other people could fight off. We had a different kind of “normal” in our lives.
So, Susie did not survive through elementary school and Sarah was a young adult when she died. Can you describe your initial reactions to their deaths, and I mean first-day, first-week reactions, and then how your grief has progressed until today, with perspective of decades?
Even though I was – the whole family – aware that Sarah would die young, she ultimately died at home in her own apartment, apparently suddenly. That sounds disingenuous, but it was during a time when she was out of the hospital, working at her job and enjoying her life. I was in shock, but I didn’t know that until I was writing Invisible Sisters and went back to my journal from that time and found that after the words “Sarah died” there were no entries for several weeks. An airplane ticket stub, her death notice from the paper, and that’s about it. Looking back now at my inability to communicate then, even with myself, tells me a lot about how I reacted.
Susie’s death occurred more than twenty years prior to Sarah’s, and I was a kid – I didn’t fully understand the idea of death. Her absence from our shared bedroom was the most ominous sign to me. My parents sent Sarah and me back to school after a very brief shiva- they wanted to make sure that we stayed on course with daily life. We didn’t discuss Susie’s death after that first day or so. I know now that’s because my parents were heartbroken and the only thing they knew to do was to move forward. People grieve differently, and I understand why my parents reacted the way they did - they were grabbing hold of life, making sure we didn't lose ourselves in the past or, in Sarah's case, worry about the unknown.
Of course I still grieve for my sisters - I think of them almost every day, in small things, like when I see children who resemble how they looked, or when I come across something - a news item, a joke, a song - that I wish I could share with them. Missing my sisters is a part of who I have become, and I honor myself - and my life with my sisters - by living fully.
You are the last sister alive, and have been so for many years. How do you think of your sisters today? And do you wonder or fantasize what life would be like for you had they not died, what your life would be like with all three of you grown up, with spouses, families, visits with the aunts and cousins and grandparents, etc.?
I think of my sisters almost every day, in small ways. A song might come on the radio that Sarah and I liked, and I want to call her so we can shout the chorus together into the phone. I meet someone, grown now, and I’m sure they knew Susie in kindergarten, and I want to ask her, “hey do you remember so and so?” There’s a truncated feeling to those thoughts, because there’s no call to make.
When I got married, I made the decision not to have bridesmaids, because my sisters, who would have been in my wedding, would not be present. So, to me, they were present in their absence.
Can you describe the effect on your parents from the deaths of two of their children?
My mother was committed to staying as on course as possible. She made life very normal for Sarah and me when we were kids. She worked, my father worked, Sarah and I went to school, had friends, had piano lessons and ballet lessons and all that stuff. We fought and hung out and had pets and did all those kid things. My father, who was more visibly affected by Susie’s death and Sarah’s serious illness, got unstable for a while. My parents eventually divorced, and my father moved overseas for work for about a year, then came back to the states and relocated and remarried. Sarah had an ongoing relationship with him, but he and I were estranged for a number of years. We reconnected a few years before his death, and I’m glad about that.
Have the deaths of your sisters played a role in your decision to forgo having children of your own?
Oh, definitely. I was honored to have a “My Turn” essay in Newsweek in the April 27 issue on that topic, the idea of being “childless by choice,” which has garnered a large amount of feedback from readers, on my blog, on Facebook, and even phone calls! About a year into our marriage, my husband and I underwent genetic testing, and found that I have a 67% chance of passing on the syndrome that Sarah had. Medical research has progressed since her death, and in Susie’s case, children with Acute Lymphocytic Leukemia have much better prognoses than they did in 1968, but my sisters’ childhoods – and mine – have made me kind of gun-shy about being a mother.
One part of the book that I found surprising and intriguing was your father's career, which is discussed in a chapter of Invisible Sisters. Would you describe your father's work in the labor union and civil rights movements?
My father was an attorney in the first part of his career – he later taught – and worked for the International Ladies’ Garment Workers Union during the early and mid-sixties. My father brought me along with him when he met with union workers in country towns around Atlanta – suburbs now – and I was exposed early to diversity and the need for justice. My parents raised us with the Jewish sense of tikkun olam – repair of the world. When Dr. King was killed in Memphis, I was eight years old, and my father brought me to Dr. King’s funeral in Atlanta; an amazing and important experience for a little kid that I’ve never forgotten.
How did the deaths of your sisters affect your own life-long relationship with your mother?
My mother and I are very close now, and we’re a lot alike. Throughout my ‘teens and twenties and into my thirties, my mother worked very hard to remind me, in small and almost stealth ways, that I am valuable to her and others, and have things to offer. This came about because in a family where the other siblings require extreme attention, the “well-sibling” takes on the role of self-care, and being a mini-adult. Well-sibling is a term I’ve come across in writing and promoting this book, and it fits. I never resented the attention my sisters received – it was their due, and I wasn’t neglected – but my Mom worked hard to keep my life as rewarding as possible, and I love her for that.
Having lived through those tragedies, what sort of advice would you pass along to someone experiencing a similar loss of family member?
Enjoy your loved ones for who they are, even when you disagree, because that’s a part of life. After a loved one is gone, don’t be afraid to remember them, even though that can be painful. I think it’s a dishonor to your loved one and the life you shared to limit yourself after their death.
Visit Jessica Handler's blog.