It was a little more than a year ago, when I understood that my sister Sarah would not get better.
I was laid up in a French hospital in the Alps, recovering from surgery for a ski turn gone wrong. It was late at night. I was alone except for my phone.
An email from her husband Michael, reported that she was not a candidate for a heart transplant. As I cried, for myself, for her, and the rest of us, I remembered how it all started, when I was 9 and she was 12, first diagnosed and treated for Hodgkin’s diseaseMemories are a funny thing of course. I can picture visiting her in the hospital – scary and exciting – as well as the strange marks on her body for the radiation treatments that would save her, and ultimately bring about her untimely death. I remember my Aunt Rita coming to stay with us, to care for me and my younger sister, Jessica. She was a teacher, with an impressive supply of Flair pens. We played Scrabble. I won. My parents rented an extra car for the endless trips back and forth to the hospital. A Ford Pinto, we loved to ride in it – it was vastly more interesting than our other car, a large and ungainly station wagon.
Sarah came home. She couldn’t wash her hair for some time – we devised braids to help her feel pretty, and tested out dry shampoos. I can see her, dressed for a Bar Mitzvah party, with her hair in these Princess Leia-like loops, the armholes of her ‘70’s era dress barely covering those radiation markings.
She recovered but her body struggled. Scar tissue from her initial splenectomy created years of intestinal blockages and many, many hospitalizations, especially through high school and college. We all became expert at coping with Sarah’s ‘attacks’ as we called them. My parents aged a hundred years from worry, fear and dread, something I can only understand now, as a parent myself.
The rest of us, her siblings, moved on. Allowing ourselves to consider her cured, we’d pause when she had her occasional medical blips, returning to regular life when she’d recover.
But Sarah always knew that it wasn’t forever. When she’d tell me that she’d die young, I’d say, “who are you, a fortune-teller?’ I didn’t like to hear her place limits on her life, her mortality, and mine along with it.
Sarah lived big, always ready for action. Her house, open to friends from near and far, was never asleep. Call her late? “We’re just sitting down to a movie.” Invite the family to a gathering, a day at the beach? “We’ll be there at 9.” They loved to travel, visiting interesting places each summer on their way home from Camp Ramah in the Poconos. Fun was always had, ideally accompanied by a beer and a treat, if Sarah was in charge.In 2007, when she had major heart repair done – this, after finally diagnosing her asthma as related to heart damage from that radiation treatment of long ago – we imagined her once again, better, or at least, removed from harm’s way. In 2011, when things got more complicated, we hoped for solutions but knew that it might not end well.
She visited me, in February 2014, at home in Jerusalem, after I returned home from France, feeling delicate and abused. She entered my home carefully, adjusting her ever-growing belly, this from a complicated fluid-retention/heart health issue that created so many problems for her, ready to encourage and entertain, as well as laugh at my story of woe on the ski slope.
After she left, I wondered to myself, “what if I gave up walking again, so that Sarah could get better?” Immediately pleased and horrified, I pondered the thought, give up walking.
My conscious mind hesitated. Big time. I love walking. I love running, to all my activities each day, secure in my physical strength and abilities.
I argued with myself. You can do it, and you would do it, if you knew. If you knew that is, that this Mephistophelian, bargain-with-the-devil-arrangement, would ensure health and security for Sarah.
Meanwhile, I healed, relieved perhaps that I didn’t have to give up walking, conscious that I could do nothing, none of us could, to stem the tide of her worsening health.
What I could do, was give her time. My brother reminded me of this important task during a tearful conversation last winter. When I wept that there was nothing to do, nothing we could change, he said, “make time for her, and spend time with her.”
So, I did. We all did. Rallying the hamoula, the extended tribe, we sent emails to close friends suggesting that they come and visit. We planned Shabbatot, Friday mornings at the beach, coffee get-togethers, a fantastic week together last summer in Caesarea. We circled our wagons in an ever-tightening ring around her.
It was good but it wasn’t enough.
From Passover on, as things just got worse and worse, I spent hours in the hospital with her. We’d listen to music, her very particular soundtrack — The Carpenters, Cantorial music, Cat Stevens, Ofra Haza, Joseph and his Amazing Technicolor Dreamcoat – and we’d slurp some forbidden iced coffee. Sarah would sit back in her chair, this after I’d wrapped her up, or massaged her cold and unhappy feet, and solve life’s most pressing issues – from our kids, to our spouses, to the possibility of a vacation this summer.
It was good but it wasn’t enough.
People ask, “how are you doing?” I’m fine. Grateful for the support system that I’m privileged to enjoy, especially at a moment like this.
I’ve returned to my life. Sort of. Except that it’s not the life I knew. It’s a new and different life, one that I’m not sure I like yet.
I couldn’t count the Omer this year, the 7 week period between Passover and Shavuot. Somehow, the act of counting down, to a new reality that I couldn’t picture, was an impossible task. My phone would remind me to count, via text and email. Eventually, I shut down the reminders.
Sarah died on the 44th day of the Omer, the 29th of Iyar, May 18th, 2015.
As the 30 days of mourning come to a close — really just 23 because of Shavuot, which shortened it down by a week (don’t ask) — I wonder, how I can give up my mourning, my kaddish, my moment in this dry and parched life without my sister Sarah?
I think to myself, maybe that’s why I’ve been swimming so much over the past few months. The water envelops me, and as I swim through it and my grief, I’m hydrated, fed by the water’s strength and buoyancy.
And my soundtrack plays, Van Morrison’s vocals encouraging me, “When all the dark clouds roll away and the sun begins to shine, I see my freedom from across the way and it comes right in on time…And it seems like and it feels like, a brand new day.”