By CYNTHIA BULIK
Published: January 18, 2014
We all deal with death in different ways. Some cultures provide structure for mourning to help family and friends process the loss of a loved one. Some cultures party to celebrate a life that was. But how we deal with death internally, in our own minds and hearts, is a very personal matter.
Death is on my mind this week because someone close to me, or one step removed, has died every day this week. On Thursday, I emailed my parents urging them to look both ways before crossing the street because I didn’t want them to be added to the morbid tally.
One of the benefits and pains of having a close multigenerational ethnic family is that as a child, you go to many funerals and lose people who are very much part of you. My great grandfather, a passionate gardener, died from a freak accident when he fell out of bed in the hospital and hit his head. My great grandmother, who made lace doilies like there was no tomorrow, died on my twelfth birthday. My godmother, who was full of life even though her heart was not, died far before her time. When I am sad, I still hear the music that was played at her funeral…”Hear, O Lord, the sound of my call,” and my eyes invariably well up. The night my paternal grandfather died, even though I was over 4,000 miles away, I had a frightening dream that my father had died. The unexpected call from home the next morning confirmed that the otherworldly fear expressed in my dream had been true, but I had the victim wrong.
In 1985, I served as a tour guide for my maternal grandfather whose life dream had been to travel to Australia and New Zealand. When he emigrated from Germany, his intention was to land in Texas or Australia, but he ended up in Pittsburgh where he became a successful tailor and drycleaner. We spent six weeks together traveling all around the antipodes from the tip of the South Island of New Zealand to climbing Ayres Rock. We landed in Auckland just as the former Whitbread Round the World race was finishing and sat on our hotel balcony watching the infectious Kiwi celebration. It was a life-changing trip for both of us. For him, it fulfilled a dream. For me, it was the prelude to moving to New Zealand and having that country become a rich part of my family’s history. Papap supported our move to New Zealand even though it meant taking his great grandson far away, after all he left his home country too. The Wanderlust gene skipped a generation and went straight from him to me. He died a few years after we moved to Christchurch never having made it down under to see our home. The night he died, I had the most vivid dream that he was wafting through our house. I was sure he just wanted to see with his own eyes where we were living, that we were well, and have one last look at his great grandson before moving onto another world. He had loved Christchurch and always wanted to return. It comforted me to know that he loved us so much to make a stop before he moved on.
His wife, my precious Nanny (pronounced Nunny), was killed by cigarettes. I loved her so ridiculously much. They lived next door to me while I was growing up so they were like the auxiliary parents who would say yes when the real ones said no. When I was young, she was my coloring partner. Later, we shopped, baked, and talked. She was the one who cried every time my little red mustang drove away to college. She was the repository for the emotion that we all felt, but didn’t necessarily show. I think of her often, because I wear a piece of her wedding ring every day. And on the days I don’t wear it, I think of her too, because I feel incomplete.
I am an only child…but not really. My mother got pregnant when I was eight and I watched and felt the baby grow inside of her. A ruptured ovary caused a premature birth, and Mark entered and left the world within a twenty-four hour period. They never let me see him. Kids weren’t allowed in the hospital in those days. All I know is that in contrast to my first two years of complete baldness, he had a thick head of black hair. My Dad baptized Mark, the only gift he was ever able to give my baby brother. Years later I realized that had Mark been born across town at the university hospital, they could have prevented his infant respiratory distress syndrome, but the under-resourced suburban hospital just miles away could not save his life. I often think how my life would have been different had Mark lived. Throughout my entire life, when I meet men who are nine years younger than me, I imagine what it would be like to have a brother that age. I wondered it at 20, and I still wonder it at 53. I have kept Mark alive all these years through these thoughts. I talk with him. I share things that my parents are doing with him. I ask him for help convincing them to seek healthcare, or to stop believing everything they read, or to stop taking so many supplements. I share joyful events with him. He is after all my only sibling.
I deal with death by keeping all of these people alive every day. When I have major or stressful events, I call on them to back me up. I think about how they would feel about decisions I make and I imagine how they would feel if they got the chance to meet and know my children—their grandchildren or nieces and nephews. I think about what it would be like if my kids had an Uncle Mark. They could go visit him wherever he may be, play with his kids, have deeper family connections.
So you might be wondering at this point, how this all circles back to Charlotte Bevan. Her death started the string of deaths I dealt with this week. I never met Charlotte. I never even talked with Charlotte. We tried, but either cancer or the media got in the way. Our relationship started last summer, when my husband and I were vacationing in Mallorca. We were just driving around the island and I had this urge to drive down a rather nondescript road toward the water. It led to the most breathtaking view and I found myself wondering whether the people who lived there ever became numb to the beauty. As we stopped for lunch, an email came in from my friend Laura Collins saying that it was really important that I call her right away. On one hand, I was thinking, “Please, please, just let me be on vacation.” On the other hand, I knew Laura wouldn’t ask if it weren’t critical. I called and she informed me that a woman in the UK, Charlotte Bevan, had been dying from cancer and was given a terminal diagnosis. It was not yet widely known. Charlotte wanted to know why the UK was not involved with the Anorexia Nervosa Genetics Initiative (ANGI) and what she needed to do to make it happen. She had decided that rather than focusing her last efforts on cancer, she wanted to focus them on helping us figure out the causes and hopefully find cure for anorexia nervosa. We hurried back to the hotel, I sent emails, ran into hurdles, found workarounds, and as only three determined moms can do, we each did our parts to get Charlotte’s Helix up and running so that the UK could contribute to our global effort to study the genetics of anorexia. Through Facebook, mutual tweeting and retweeting, and often via Laura, we spent the last several months building the infrastructure for Charlotte’s Helix. Bringing Gerome Breen on board, we got the Institute of Psychiatry engaged and opened his eyes to the power of eating disorders advocacy. We got the UK on the map for anorexia genetics and now we have to keep it there in honor of Charlotte.
Even though we never met, I will keep Charlotte alive in my mind every day for the rest of my life because her passion and dedication have created the Helix, which is an integral part of the work to which I have dedicated my career—namely, decoding the genetics of anorexia nervosa.
Months later when we were well into our work together, I found out that that beautiful cove I had just visited on Mallorca the day Laura emailed me was just a stone’s throw from Charlotte’s summer home. Explain that!
There’s so much we don’t understand about dimensions of the world that we can’t see. But hopefully, in honor of Charlotte, together ANGI and the Helix will help us understand the causes of the illness about which she and I are so passionate. I will continue to work toward that goal every day in her honor.
If you have had anorexia nervosa at any point in your life, please consider participating in ANGI or Charlotte’s Helix.
From The Times and Telegraph newspapers:
CHARLOTTE BEVAN
For more information on Charlotte’s Helix, an international project in her name, please visit the Helix website.
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