To AKR

On Sunday I relaxed at the beach and finished up Encyclopedia of an Ordinary Life by Amy Krouse Rosenthal. The book is a memoir done in the format of an encyclopedia in which the author alphabetically captures her observations and reflections of her every day life. Her entries range from profound to comical, and she zooms in and zooms out on her life in a way that allows you to get to know both her idiosyncrasies and the time and context that shaped them.  I grew to like her more and more with each page and by the end I felt like we had been lifelong friends with all sorts of stories and shared experiences that we could chuckle about over a cup of coffee (Amy loves coffee!).

AKR, as I like to call her, has a habit of writing to authors when she finishes a book they have written, so I thought she would appreciate a note from me with my reflections on her book. While I was still at the beach, I looked up the book's website that was shared on the cover, but the website couldn't be found. Next I tried AKR's website that was also shared in the book. Again, I got the message "website cannot be found." I concluded that this was the fault of poor cell service, typed some notes on my phone to remind me what I wanted to say to her, and decided to try again at home.

When I got home I tried both the book's and AKR's website addresses again with no luck. Were both the websites down? How weird. I googled her name and when I saw the first entry my heart stopped - "Amy Krouse Rosenthal Obituary." Obituary?! She's dead?! My friend is dead?! I felt a lump grow in my throat and tears begin to well in my eyes. How could this be?!

In her obituary I read about a column AKR had written that was published in the NYT, titled "You May Want to Marry My Husband." She had written the article as a love letter and Valentine's gift to her husband when it was clear that she was going to lose her battle to ovarian cancer at age 51. I remember hearing this touching story on NPR back in 2017 when the article was first published, but I had not connected that author to the author whose book had totally absorbed, entertained and moved me. She had inspired me to strike up a conversation, but it was too late. She was gone.

I have not been able to shake the desire to have that correspondence, so I'm just going to have it here. AKR, here's what I wanted to tell you:

1. I found it very affirming to read that you share my fear and distrust of escalators. My family is particularly fond of the movie Elf because the escalator scene is just a small exaggeration of the routine I go through when I mount and dismount an escalator. I completely distrust the toothed monster at the entrance and exit of every escalator and make sure that I step way over its mouth as I get on and off so that it doesn't reach up and snatch my foot in its teeth. I love amusement park rides of all shapes and sizes but, damn, escalators are scary!

2. I sympathize with your inability to remember which side your gas tank is on. I want to let you in on a little secret before you are subjected to the humiliation I experienced when my teenage nephew who didn't even drive yet told me the sure fire way to know. You see, there's a little picture of a gas pump on every dashboard with an arrow pointing to the side your gas tank is on. I'm not kidding, there really is! Go look for yourself! Before you get too excited, this information will not be as life-changing as it seems. If you're anything like me you will forget to consult the picture until you have pulled up to a pump on the wrong side.

3. Thank you for allowing yourself to vividly imagine how it would feel to lose your child. For all of us whose children slipped through a hole in the universe; who were there one minute and gone the next; thank you for allowing yourself to feel and express the terror, grief and anticipation of profound loss when Miles slipped through that hole in the floor of the shipwreck you were exploring. When my daughter died, so many people said, "I can't imagine what it would be like to lose my child." What many of them meant was, "I don't want to imagine what it would be like to lose my child." It takes courage to face the potential of a loss so profound. I realize that was not the last time you needed that kind of courage. I'm glad that you found Miles, scraped up but safe, one level down. I'm glad that you escaped a horrifying loss that time and got more time with Miles. And I'm so sorry that your time with Jason, Justin, Miles and Paris was cut short by your disappearance through a hole in the universe. Thanks for letting me get to know you.

Your friend,
Nancy

Lucky

I had always considered myself a lucky person – a happy person. I have a large, boisterous family. My parents remained married their whole lives, and while there was sometimes strife between them, it wasn’t hard to tell that they were devoted to one another. I had enjoyed a lot of good fortune and very little loss. I even married my first love.

The first bump in the road came for us when we tried to get pregnant with no luck. There were a couple of years of humiliating infertility testing before we got a satisfactory diagnosis – I had a congenital anomaly of the uterus that left me with one fallopian tube and a very under-sized uterus. It was still conceivable (pardon the pun) that I could get pregnant, but there was a big question mark about whether I could carry a pregnancy to term. For the first time in my life, I felt unlucky.

It didn’t take long for me to emerge from my self-pity and realize I had options. Good options. I began looking into adoption. Private open adoptions were just taking off at that time and there were some high profile stories about adoptions gone bad. These stories terrified my husband, Peter. He imagined the pain of bonding with a child and then having to return the baby to his or her birth parent. He was not convinced this was the right path for us. We read a lot and went to adoption conferences. The wonderful stories of families formed through adoption gave us both hope and we began making our own adoption plan. We decided to adopt internationally, from Colombia, and began the application and home study process.

Before our home study was even complete an opportunity for us to adopt domestically became a possibility. We had deliberately decided not to do this, but this out-of-the-blue opportunity seemed fateful. Our social worker told us there was very little chance it would work out, but just several weeks after the first conversation we found ourselves driving south to await the birth of our daughter. When we held Emma for the first time, we couldn’t believe how lucky we were.

Our luck repeated itself 3 years later when I found myself pregnant. Our second beautiful daughter, Sarah, arrived a little more than 4 years after Emma and once again, I considered myself one of the luckiest people in the world: a nice home, a loving husband and 2 beautiful daughters. I was living a charmed life.

When a tragedy strikes, life changes in a head-spinning moment. On June 17, 2009 our lives changed forever when our beautiful daughter Emma took her life 5 days before her 17^th birthday. Emma had had some struggles throughout her childhood, but she was from all appearances a happy, smart, personable and accomplished young woman. Nothing could have prepared us for her death, and nothing could have prepared us for the journey with grief we have faced since her death.

It rained non-stop for the five days leading up to Emma’s funeral, which seemed appropriate. It was like the universe was mourning with us. Deaths by suicide are often hidden and shrouded in shame. We did not hide how Emma died. It was not a conscious choice. In our shock it didn’t even occur to us to lie. Thankfully, family, friends and our community rallied around us. We felt loved and supported and that was a great help.

The really hard part of the journey came after the funeral. People who had been supporting us non-stop began to go back to their lives. We were left alone to deal with the shock, shame, guilt and bone-crushing grief. Sarah was terrified that her family would fall apart under the weight of all these emotions. She had lost a friend to leukemia in 4^th grade and had watched that family disintegrate afterwards. About a week after Emma died the three of us were sitting at the dining room table trying to make sense of what had happened when Sarah declared, “We are not going to let this destroy us!” She was right, of course. We couldn’t let that happen. It wouldn’t be right for us, and it wouldn’t be the right way to honor Emma’s memory. We had to find a path forward.

In late August, 2 months after Emma died, Peter went back to work and Sarah went back to school. I had quit my full-time job so that I could be available for Sarah if she needed me, but my boss insisted that I continue to work at least a little – 10 hours a week; not because they needed me, but because she thought I needed some purpose. We were all finding it difficult to concentrate and be productive, but we had gotten some advice to just “fake it until you make it,” so we were faking our way through the days.

My boss’s instinct was right, and I soon found myself spending too much time alone with nothing to distract me from my grief. I decided to volunteer to be a guest reader for a kindergarten class in a neighboring city. Emma had loved books and reading from the time she was tiny, so going in to read to that class was almost like an act of communion. The children were also incredibly healing for me. The reflection of myself that I saw in their smiles, heard in their laughs, and felt in their hugs, made me feel that while I felt broken, my spirit was still intact.

Maybe it was reading those books Emma loved to the kindergarteners, but about 4 months after she died I began to get a rush of memories that I felt compelled to record. This came as a great relief because immediately after Emma died it felt as if all of my memories of her had been erased from the hard drive of my brain. I started a blog to capture and share my stories of Emma and for the rest of the first year and most of the second year I posted a new story every day.

We joined support groups – two of them – where we could share our heartbreak and shock with people who had experienced the same or similar losses. One of our support groups was for parents who had lost children in all different ways, but when we joined we were the only ones who had lost a child to suicide. Going in we thought that our experience was too different for this group to be helpful. But it turns out that shock, isolation, guilt and, of course, grief accompany the loss of a child regardless of the circumstances.

I also allowed myself to be angry, in mostly productive ways. I was distressed by the cursory way that the school supported and educated Emma’s friends after her death, so I educated myself and shared the resources I found with the district. I worked with the district for the better part of 2 years to get a more comprehensive suicide prevention, intervention and response policy in place. I became active in the American Foundation for Suicide Prevention (AFSP), raising money to support education, survivor support, training, research and public policy efforts. Twice I joined AFSP in Washington, D.C. to visit my legislators, share my story, and ask for their support of important mental health legislation.

Sarah and I traveled to India on a mission trip to get some perspective on our lives. As unlucky as we felt on a day-to-day basis, we couldn’t ignore our privilege when faced with the wretched conditions we saw in the slums of Hyderabad. Yet, despite extreme deprivation, all the people we met were supremely joyful. Humans are resilient. We will be resilient.

And I formed new friendships. Looking back, I think this was perhaps the greatest sign of the resilience of the human spirit – that I could form new bonds in the face of a devastating loss. But I was lucky enough to have some wonderfully kind and generous people befriend me after Emma died. Some of the people I knew well before Emma’s death had an unhelpful inclination to try to fix me. These new friends were willing just to be present – to stand in the circle of my grief with me and let it be.

None of this was a silver bullet. Grief will have its day. You can’t will it away. We were shocked to find that the second year was harder than the first. I suppose we thought the first year was like a sprint to the finish line and that we would feel better when we got there. It turns out this journey with grief is more like a marathon. Life would never be the same and we needed to find a new rhythm – a new normal, as they say.

I’m 10 years out now.  We have found that new normal. I’ve been back working full time for more than 7 years now at jobs that have provided real purpose. Sarah has graduated from high school and college and has continued to lead us with her insights and determination. She has learned to tell her family’s story truthfully and openly and has found support and acceptance all along the way. Peter and I are celebrating our 33rd wedding anniversary this year, dodging a frightening divorce statistic for couples who have lost a child.  I still miss Emma every day. I still get sad. Anniversaries, birthdays and holidays are still hard, but I’ve come to accept this as the price of loving someone with all your heart, and I wouldn’t trade that love for anything. I’m a lucky person.

2019 Scholarship Presentation

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Tonight we presented the Emma Jane Memorial Music Scholarships at Fairfield Warde and Fairfield Ludlowe High Schools for the 9th year. This marks the start of a week that we refer to as the gauntlet. The order of events sometimes changes, but it is the same milestones. The order this year: scholarship presentation, Father's Day, anniversary of Emma's death, our wedding anniversary, and then Emma's birthday, all in the space of about 10 days. This year we will finish the gauntlet by walking 18 miles overnight at the Boston American Foundation for Suicide Prevention's Overnight Walk. It seems a fitting way to mark Emma's birthday and the 10th anniversary of her death.

The scholarship presentation is an important evening for us to remember Emma and provide a little education about suicide. Here's what we said:

Good evening. My name is Nancy von Euler and this is my husband Peter. In 4 days we will acknowledge the 10^th anniversary of the loss of our daughter Emma. In the days immediately following Emma’s death, we were faced with making the unimaginable decision about where memorial gifts should be made.  Needless to say, we were not prepared with an answer. But we pretty quickly zeroed in on the idea of establishing a scholarship fund with the High School Scholarship Foundation of Fairfield. Emma was a bright, beautiful, kind and talented young woman who loved music. We hoped that the financial support from this scholarship would provide a little help and encouragement for students like Emma to pursue their dreams. In the 10 years since we established this fund, and largely thanks to the generosity of all the people whose lives were touched by Emma’s, we have awarded $34,000 in her name.

As we approached the first scholarship award ceremony a year after her death, we realized that this scholarship presentation also provided an opportunity to briefly talk to the graduating seniors each year about something that we think is really important. 

You see Emma died by suicide, and suicide prevention is now a mission for us.

So tonight we want to share just 7 pieces of information and advice. We promise to be quick.

 # 1 – In 90% of deaths by suicide, the underlying cause is a diagnosable, although sometimes undiagnosed, mental illness. Like physical illness, mental illness comes in acute forms, like pneumonia, and chronic forms, like diabetes. It is nothing to be ashamed of and in all forms it is treatable. 

#2 – Perhaps its obvious, but the organ mental illness attacks is your brain – the organ you trust to generate your thoughts and feelings. With people who suffer from suicidal ideation, their brain turns against them. If your brain starts telling you you aren’t good enough or that the world is better off without you, tell someone, because that’s a symptom of illness, not rational thought, and it can be treated.

# 3 – Be accurate. When someone dies by suicide its tempting to join in the explanation game. There is usually only one thing we can be sure of – they were suffering. Proposing easy explanations belittles that suffering, contributes to stigma, and may discourage others who are suffering from seeking help.

#4 – Be kind. You will not always know when someone is suffering. I imagine you are all good people. You wouldn’t purposely add to someone’s suffering. Don’t do it by accident.

#5 – If a friend tells you they are struggling, assume you are the only one they have told. As a friend, your job is to listen, support, and report – but not to diagnose, advise or fix. That’s the job of the pros.

# 6 – Find out where to get help before you or a friend needs it. Put the crisis hotline and text line numbers into your phone, and if you are headed off to college in the fall, find out where the health center and the counseling center are. Chances are they were not pointed out when you went on your campus tour.

And last, but not least, #7 – Embrace your whole self, not your social media self. Until we all start posting pictures of what we look like when we roll out of bed, or about the exam we failed, the catch we missed, the argument we started, and the rejection letters we collected, our social media presence will only the reflect the shiny surface of who we are as people. Your parents will post a picture of your newly set up dorm room this fall, but take my word, they aren’t going to post a picture of what it looks like when they pick you up at the end of the year! And yet that end of year photo would tell me so much more about you – for example that you hadn’t done laundry since Thanksgiving. But that’s okay! Every weakness is an opportunity to grow.  Every failure is an opportunity to learn. Being perfect isn’t all its cracked up to be and as Emma herself liked to say, “normal is just a setting on a washing machine.”

Fairfield Warde High School:

This year’s recipient plays both the piano/keyboards and the bass and has been in Warde’s Symphonic and Chamber orchestras since 10^th grade. He has also been a member of the Jazz Band and performed with the pit orchestra for all Warde’s musicals.  He was inducted into the Tri-M Music Honor Society as a sophomore. Our winner has demonstrated empathy and compassion at school and through service to the broader community.

We are thrilled to present the Emma Jane von Euler Music Scholarship to Jordan Pistilli.

Fairfield Ludlowe High School:

This year’s recipient has passion for music and plays keyboards, oboe and bassoon and is a vocalist in school. What is that? A quadruple threat?! He has performed in the Jazz Performance Band (serving, wind ensemble, chamber choir, and In Harmony and is a member of Tri-M Music Honor Society.  He was selected for CT Western Regionals, and was awarded Top Male Vocalist at an Acapella Invitational.   

We are thrilled to award the Emma Jane von Euler Music Scholarship to Aidan Kilgallon.