Sunday, November 10, 2013


Dear Reader: I write to better understand my experiences of life; I share with the hope that my words will touch something inside you, and together we will remember that we all walk through life with love and loss, joy and sorrow, hope and despair, faith and uncertainty.

NOTE: In this post I discuss death.

Veerle was a curious, obstinate, passionate young woman eager to explore every facet of life. Our families had known each other our whole lives, but I didn’t really get to know her until my last year of high school when I lived with her family in Belgium.

Three years her senior, I came to think of Veerle as my little sister. I loved her fiercely, and I wanted to knock life’s barriers out of her way. Being a teen myself without the benefit of wisdom, that sometimes included lying to her parents so she could see that risqué movie or sneak off for a rendezvous with the boy she had a crush on.

Veerle was just 18, waiting to cross the street on her way to choir practice, when two cars came racing around the corner; one jumped the curb and killed her there on the pavement, then kept on going.

When I heard the news, I had just brought home my two week old son from the hospital. I was still in shock from becoming a mom and from having him in intensive care for severe jaundice. Baby Chris and I were barely getting reacquainted when my mom called to tell me Veerle had died.

Veerle was vibrant and spirited. I could not grasp that everything she was, the fierce light that shown through her, was gone. I couldn’t comprehend that she was gone, just like that. Where did she go, her essence, her spirit, her soul? How could all of that simply stop being? I couldn’t make sense of it. Why her? Why couldn’t it have been someone older, someone less special, someone I didn’t love so completely?

There was no room for my grief. No time to grieve. I could cry, a little, while nursing my son or rocking him to sleep. But to truly honor Veerle, honor the loss I felt at losing her, there was no place for that. My husband wasn’t much older than me and unprepared to deal with either parenthood or being a supportive spouse, so I did the only thing I knew to do: I soldiered on, and tucked away my strong emotions as deeply as I could. That’s the deal: in order to bury our grief, we also bury our joy and delight. Without doing it consciously, I buried those most tender and vulnerable parts of myself.

I used to imagine Veerle visiting me in the U.S., the two of us creating memories together and being the best of friends through the years. My grief at losing Veerle lodged somewhere in my throat, where it stayed for 18 years.

When my son turned 18 and he could travel outside the country without his father’s permission (he and I having long since parted ways), I took Chris to the small Belgian town where I’d lived with Veerle and her family my last year of high school. Veerle’s brother Bart, with whom I’d also been very close, and I bought a jasmine plant and drove to the picturesque stone church, in the shadow of which she was buried. Her grave was marked with a simple wooden cross, the words “loneliness is life without you” expressing what my heart had tried to keep hidden all those years. As we dug into the soft dirt to plant the fragrant jasmine, I felt years of suppressed grief, tears, pain and loneliness spill out messily and noisily. I felt my grief carry me away, and I had no choice but to hang on while it played out. Eventually I felt a weight lift, a clamp on my throat release. I was there where she had been laid to rest by those who loved her dearly, I sensed their caring, and I honored her by finally releasing all my unexpressed pain from having to live my life without her.

What do any of us know, really, about the purpose of Life? But if I am to hazard a guess, I’d say it isn’t to be happy, or even to be at peace. I would say the purpose of Life is to Show Up, to participate fully, to truly experience what it is to be Human. And that means to be happy, blissful, rapturous; but also to be anguished, outraged, fearful, confused. How can we participate fully in Life and not feel these things?

Four weeks ago my 18 year old niece Simone died of a very aggressive cancer. We had less than three weeks to prepare. I didn’t know that cancer could strike so hard, and so fast. The first day I heard the news, I wasn’t particularly worried. So many young people survive one sort of cancer or another. But then the prognosis came and it was grim. First was the shocking news that she had cancer. Then plans for emergency surgery. Then those plans were scrapped in favor of chemotherapy. Then when Simone showed up for her first treatment, the doctors said that the cancer was in fact untreatable. Simone was given a few weeks to live, then that was amended to a week, then to just a few days.

It was like being slammed to the ground, over and over. There was no time to grasp each prognosis, before the next came in dramatically more horrible than the last. And this was how it felt to me, not a member of Simone’s most inner circle. I cannot begin to imagine what this was like for her mom Lauren, or for my sister’s family who were like Simone’s second family.

Simone was surrounded by the people who were most important to her, and there was time to say the final words that not all of us take the opportunity to speak. That, at least, is something that I hope will be comforting in the years ahead.

For the first several days into Simone’s brief battle with cancer, I responded how I often do these days: I hid from the world, paralyzed by the enormity of it. Then after a few days I found the strength to offer support. At that time those who had been most active in Simone’s life were already at the hospital with her, and I realized that if I were to go it would be for me, not her. So I offered what support I could from the sidelines.

Simone died very early on a Saturday morning. My son Chris and his partner Selena had already made plans to drive up, and decided to forge ahead. I realized it was time for me to Show Up. After expressing my anxiety about being around family members who would be in a highly emotional state, and perhaps eager to proselytize to me (a familiar scenario, me being the youngest), and being reassured that I would be safe, I drove to my sister’s house. She, her husband, and their 12 year old son and 15 year old daughter had been extremely close to Simone throughout her life.

They were assembled, exhausted in that way that cannot censor raw emotion. Spending the day there I found that each of us was moved to tears at different times, for different reasons. My niece Kami had created an altar for Simone with photos, candles, flowers, and origami cranes, whose symbolism for providing her with safe passage made me dissolve into tears. What I discovered was that my grief would well up and overflow, along with tears, and nothing awful happened. I was not overwhelmed or swept away. No one looked at me askew or used that as an opportunity to proselytize. My sister and her husband shared the parts of the story that seemed most pertinent to pass along, or that they were still wrestling with. And in the sharing came their tears. It was the first time I have experienced feeling completely emotionally safe among a group of people in mourning, or for that matter going through any highly emotional experience. There was an absolute acceptance that each of us were going through something profound and very personal, and we were all there to do it together and to support each other in that process.

That evening my son and his partner arrived, and they brought with them their own acceptance of loss and grief, born of their unusually early experiences with death. Having them there, being able to set eyes on them and give many hugs, was as important to me right then as breathing my next breath.

Lauren asked a few women to come with her to the funeral home to wash and dress Simone. When I first heard the request, I recoiled inside. Somehow through my life, I’d decided that every dead person I saw did me harm; seeing death was something to be avoided. But this was Lauren’s first request for me to help. And how could I possibly say no to a grieving mother? And alongside the fear, there was a quiet sense inside me that knew it would be ok; I would be ok.

I said yes immediately, then continued to think about it overnight to be sure. Simone would have been autopsied both to retrieve some of the cancer for research, and to have her eyes removed to be used as transplants. It could be really awful to see her that way. Still, all of my initial feelings remained: I was terrified, but also knew that I wanted to do this for Lauren, and knew inside that I would be ok.

Six women gathered; Lauren wanted to be respectful of Simone's modesty by including only women. My almost-daughter-in-law Selena was there as well. She is a remarkable young woman, intense in an open and completely present way. She quietly and efficiently set about anointing Simone’s body with water and oils. Being there was so unlike any experience I’d ever had before, spending time with the body of a young woman whose life had ended so abruptly, helping others clothe her in a favorite dress, arrange her hair, and place flowers all around her. Just comprehending that we were here with the lovely form that for eighteen years had contained the young woman we all knew and loved as Simone was beyond me. It was the saddest activity I’ve ever participated in. At the same time, it was beautiful and moving and sacred. I sensed the legacy of women down through the ages gathering in death to choose a loved one’s last outfit, to touch her for the last time, smooth her hair and kiss her cheek. We shared the experience of performing an ancient ritual while allowing the incomprehensible loss and grief, confusion, love, and beauty to all be there simultaneously.

It is far too soon for me to say how that experience changed me, how it has changed my relationship with death and the deceased. I do know that it was profound and sacred in a way that I may never be able to fully understand or explain. I am so honored that Lauren trusted me with this, and I am grateful to have been there.

I do feel called on to reevaluate my life and what is most deserving of my time and attention. This could be my last year, my last day, my last hour. There’s no way I can know that; no way anyone can. How do I want to spend whatever time I have left? I want to learn to live with intention. When I find myself thinking, “When will this day finally be over,” I will try to think, “what can I do to make today count?” I don’t want to wish away any more of my finite days. Is there something I can do to add value to each and every spin on our axis?

What Simone’s death has brought sharply into focus for me is how fiercely I love the people closest to me. I want to reach out to them more, be more of a presence, make sure they know I care in whatever small way I can. Calling or even texting my nieces, nephews and son every few days has become a new routine that I hope to maintain. I want my nieces and nephews to hear from me enough that they think of me as a resource if they ever need. Just establishing that connection seems so very important to me, and I only wish I’d done it sooner.

So doing something, even if it’s very small, for another person is something I try to do every day. Maybe it’s listening to someone at work who is describing a difficulty – really being there, giving them my full attention, bearing witness to their struggle.

I also try to do something every day that is good for me. And by “good for me” I do not mean checking items off my To Do list like laundry or the dishes. Neither do I mean mollifying myself by consuming unhealthy snacks or buying things I don’t need and can’t afford. But eating healthy foods, doing a little yoga or even something cardiovascular, spending a few minutes writing about how I feel, or sitting silently in meditation, these things are good for me. And not only do I want to do more of them, I don’t want a single day to go by where I have forgotten to take care of myself in some small way.

In addition I’m trying to remind myself of life lessons that resonate with me right now. One is the concept I’ve just written about: that I want to make every single day count because I don’t know how many days I have left. Another is something I read from an interview with the actor Michael J Fox, who has struggled with Parkinson’s for about twenty years.

He doesn’t in any way paint a rosy picture about his Parkinson’s, or suggest that he is somehow grateful for the lessons it has brought. But he does suggest that we all have our own struggles; Parkinson’s is just one of life’s many challenges. He says, “I really believe, let [your hardship] be what it is. Accept it; know what it is you're dealing with. And if you do that honestly, and you really look at it and you're not afraid, then you'll see how much space there is around it and how much room there is for other things, other attitudes, and other experiences." He then says, "Look at the choices you have, as opposed to the choices that have been taken away from you."

This so eloquently sums up my feelings about life right now. We don't know what life is going to hand us. And sometimes it hands us things that really suck. Both Simone and Veerle died on the cusp of adulthood, before they had the opportunity to explore life on their own terms. For their families, losing their daughters just as they had finished raising them and prepared to launch them into adulthood, is a challenge almost too awful to bear.

For me my life has completely unraveled as a result of my PTSD and it is often completely debilitating in ways that people cannot see or understand. I feel like a shell of my former self, and I carry this stigmatized burden silently. I am furious that life dished this out, and I have been preoccupied with hopes of "getting back to normal." But this may be my new normal; and in any case it is my current reality. It seems that I need to really look at who I am now with my "limited" abilities, and figure how I can create a life that is not only worth living, but that makes the world a little bit better. I am imagining far less grandiosity and ambition, far more modesty, and achievements that are more focused on sharing my love and gentleness every day.

I used to want and expect a life that was extraordinary. Now I want to touch people, and be touched by them. And I don't think that I'm settling; I think perhaps finally I am getting on the right track.

At Simone’s service her family, friends and classmates showed up in the hundreds, completely filling the pews and requiring an unused balcony to be opened and folding chairs to be brought in to make room for everyone.

The service was beautiful and genuine. No one tried to put a silver lining on this tragedy, and no one tried to suggest that there was Divine reason for her death. Rather, there was consistent affirmation of the incomprehensibility of Simone’s early death and the immense pain this has caused, and will continue to cause, those who love her. And there were gentle questions about where we might take this in our lives. How do we best honor Simone? How do we honor the fragile nature of our own lives, and the lives of those we love?

My son and his partner had had to return home before the service. But Chris spent some time writing his thoughts to be shared during the service. A year and a half ago, my son Chris was diagnosed with cancer. So the family had experienced the confusion, fear and grief of cancer before. In Chris’ case we worried for months before we had a good diagnosis and prognosis, but his surgery was successful and his prognosis is very optimistic. Chris has considered this a wake-up call to live authentically and with intention. And he wanted to share with all of us some of what he has come to believe, having himself looked death in the face.

"As the grief continues to take shape for us over the coming weeks and months, regrets of things not said or done most certainly will arise for many of us. I ask that we are kind to ourselves in this process. I also want to offer the possibility of transmuting those regrets into something profound. Let this experience be a catalyst for living in such a way that we no longer have regrets. Let us remember to say and do the things that we know deep down we should. Let us go to sleep each night knowing that we did everything possible that day to live our lives to the fullest and richest extent possible, letting go of anything we didn't get to and accepting the very real possibility that tomorrow will not come for all of us. If there is any gift that we could offer Simone may it be that we live in the most grand, life affirming way possible."

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  1. From a memoir written by a man who lost his brother suddenly, "It is one thing to try to be humble, and it another to be humbled. With my brother's death, I was humbled by Life." I thought of it as I read this entry because I felt as if you were describing the experience of being humbled that we all experience with a great loss. Veerle was such a bright light. I am so glad to have met her, and glad for you that you knew her. And I do not know how it is we all keep coming back after Life and Death humble us - but I am glad we do.

    1. There is something about those significant losses that certainly remind me that I am not in control, and that no one knows what today will bring. It is humbling for sure. I tend to think of it as being smacked around, or knocked down by life. I've certainly struggled to figure out what I can say to myself so that I do keep coming back. Since I don't have a spiritual framework to help make sense of these tragic deaths, my reason to carry on becomes about creating something meaningful in what I do - even if it is a very small and unspectacular thing. Thank you for sharing that quote.