“We are all different. While there is life there is hope.” Stephen Hawking
“John! John! Wake up!” My husband of less than two years and I were sleeping in the basement of his parents’ house, having just moved out of our apartment in Manhattan, preparing to move to Larchmont, a beautiful suburb just north of the City. Noting he was still fast asleep, I pushed against his shoulder and he woke. “It’s 2:00am! What’s going on?” Feeling admittedly guilty, I simply couldn’t help myself, for I had just had a nightmare that felt so real, I needed assurance it was not. “Johnny, I just dreamt I had an ectopic pregnancy. We were rushed to the hospital and everything. It was so frightening.” In that moment, even with my husband’s arm surrounding me, I felt completely overcome with the shivers. John decided to distract me and suggested we get up and watch TV. Nick at Nite was showing reruns of “All In the Family” and I allowed myself to enjoy the nostalgia. An hour later, finally both back in bed with visions of Archie Bunker yelling ‘Edith’ in my head, John whispered in my ear the most comforting thing he could think of. “That bad news was just a dream. The good news is just that—it was only a dream.”
“Well Meg, I have some bad news and I have some good news. Which do you want to hear first?” John and I were in the office of an obstetric specialist on the Upper East Side of Manhattan, and the question was posed to me. The answers would change the course of our life together. The prior hour, upon arrival, the nurse had injected a purple dye into my abdomen for the purpose of detecting the state of my sole remaining fallopian tube and whether it was sufficiently clear for an egg to travel.
It had only been three months since that late October morning when I had been rushed to Mt. Sinai to have emergency surgery. The good news of our first pregnancy had turned frightening when I started to bleed and we learned that the embryo had lodged in my fallopian tube, having failed to traverse down to the uterus. The pregnancy was ectopic. The rupture was life-threatening. The surgery required removal of one of my two tubes.
Now we needed to know if and when we could try again. I looked up at the doctor, and felt the urge to scratch my face. I always hated when someone asked me that type of question. Was it better to hear the good before the bad? The bad before the good? Being a pragmatist, I decided that I needed to brace myself for whatever negative news would be hurled and then manage it by hearing something positive. Staring at the wall behind the doctor, I simply said, “the bad.”
He turned to me. “Okay, the bad news is that you are covered in welts. Why didn’t you tell us your were allergic to iodine which makes up the dye?” My gaze transferred to his face, tears now beginning to form as John grabbed my one fingered hand. He continued. “The good news is your other tube is totally fine. While there is always an increased risk of another ectopic for any woman who has had a prior experience, you should wait another six months to give your body a chance to heal, and then go for it.”
Less than a year later we heard the heartbeat of our first viable baby and rejoiced. Yet, a short time after that I was confronted with yet another doctor who told me he had bad news to share–that I had passed my genetic condition along to my child.
This week I caught glimpse of an article shared on Facebook that depressed me for much of that day. It was about a couple in Australia who decided to terminate a pregnancy after learning the unborn baby would have a ‘deformed’ left hand. While I don’t intend to explore the complicated topic of a woman’s right to choose, I couldn’t help but wonder a lot about the moment when her doctor spoke to her. I somehow doubt the doctor offered a “Good news/Bad News” option, leading instead with the bad. The article said the woman from Brisbane was “really, really depressed after getting the diagnosis that her baby would have a physical disability and she said she would feel guilty about bringing a child into the world with a minor physical ‘problem’.”
That same night John and I went with some friends to see the new movie, “The Theory of Everything,” about the life of the extraordinary cosmologist and theoretical physicist, Stephen Hawking. Hawking was a student at Cambridge University when he began to notice subtle problems with his speech and mobility. He underwent a series of tests and discovered at the age of twenty-one the bad news that he was in the early stages of Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease. He was given two years to live. The news, of course, was devastating for Hawking and his family. He had recently fallen in love with Jane Wilde and decided to focus on the good that remained in his life. He became a more focused student and earned his PhD. He married Jane. To everyone’s surprise, Hawking continued to live beyond expectations, work at Cambridge and raise 3 children. According to Hawking, before his diagnosis he hadn’t focused on his studies. However, with the realization that he might not live long enough to earn his PhD, Hawking devoted himself to succeeding in every way possible. And although as expected, his ability to move and speak were lost over time, technology allowed him to continue to communicate and write. Hawkings contributions to theoretical physics are reknowned and now in his seventies, Stephen Hawkings has tried and succeeded in almost every task in his life.
While watching the film, my mind turned to a man named Stuart Rakoff, who had written a Guest Flaunt for me exactly one year earlier. Rakoff has been diagnosed with ALS less than two years before I met him. I wasn’t exactly sure what he was going to write about for Don’t Hide It Flaunt It. In it, he confessed that lately he had been, “almost obsessed with getting organized. I have struggled all my life with the need to be right, wanting to be in control, and often focusing on really inconsequential details I thought were “manageable” at the price of missing the bigger issues. But I realize that this behavior has also been a way of getting my affairs in order – of imposing some control on my out-of-control life.”
Stuart Rakoff ended his Guest Flaunt with the realization that, “Sometimes all it takes is to step back and look again from a different perspective – being careful of course not to stumble and fall.” Rakoff’s words, and the Hawking film shared a theme for me. Bad news is something we receive that is out of our control. We can’t avoid it, so we have to manage it. The trick is to accept the truth, find peace with it, and repurpose our remaining time or options toward something positive.
In this regard, I can’t help but think of my own life experience. There is no question that the news that I would be passing along my genetic condition felt at the time like the worst thing possible. It was easy to feel sorry for myself and hard to see the big picture. Yet, by letting go of my fears, I learned to grow and embrace my difference. In reality, through my commitment to make the most of it–actually that bad news transformed my life and has turned out to be my biggest blessing.
This blog post is dedicated to Stuart Rakoff. Less than three weeks after writing for DHIFI last December, Rakoff lost his battle with ALS. On this first anniversary of his death, I’d like to quote him from his own final blog post: “Surrounded here by so much love and care I feel I am ready for the next step. I have no regrets at all – I have had a full life, touched and been touched by such wonderful family and friends. So if there is to be a final lesson for me it is that love is the ultimate gift — love and honesty.”