My name is Alexandra Drane – 40 years old and founder, Chief Visionary Officer, and Chair of the Board of Eliza Corporation, as well as co-founder of Engage with Grace and Seduce Health. The work we do is the work of people obsessed with helping folks be happier, healthier, and more productive. We’ve seen that the authentic, relevant – even flirty – use of technology can help make that happen.
We also believe in the power of stories to engage people and inspire them to make better decisions – which is why we’re sharing this story with Better Medicine. And until every single one of us is the perfect picture of health, and every one of us can articulate his or her own (and his or her loved ones’) end-of-life preferences and be willing to advocate for them, we will continue to share our experiences in hopes that they can make a positive impact on overall health and well being.
How I Became Engaged With Grace
Back in 2008, a friend and I met for dinner – the kind of dinner at which food is the side, and the main course is a fully engrossing conversation that barrels along a mile a minute. We wound our way to the topic of end-of-life care and jointly bemoaned how terribly our country deals with it. We shared statistics – such as the fact that 70 percent of people want to die at home, but only 30 percent do. And then, because life is about a lot more than statistics, we started sharing our stories. And when it was my turn, I shared the story of my sister-in-law Za.
Way back before the dawn of time, I met and agreed to marry a young man named Antonio. I say young because he is, in fact, younger than I am – which makes me a cougar (which I like!).
In the week before we were to be married, on New Year’s Eve, his sister – whom I had come to feel was my sister – fell ill. Not regular run-of-the-mill ill, but ill-ill. She was tired, despondent, and eventually even almost surly. To the extent that her husband, John, was concerned, and her eat-me-with-a-spoon delicious young daughter, Alessia, who was 2, was confused.
On the day we were to be married, the entire family – many from the U.S., some fresh off the plane from Sicily – read her the riot act. “Za, come on. You need to pull up your socks – get it together – tonight is a big event and you need to be there.” So off we sent her to the local hospital to be hydrated, since clearly this was just an issue of her not taking care of herself well…nothing a few liters of IV saline wouldn’t fix.
While we were busying ourselves with final preparations, a concerned care team was taking her in for an MRI.
While we were heading to our ceremony, the doctors were conferring that they had found a mass in her head.
While our reception was beginning, we were giving toasts about how much we missed Za, and how sad we were that she seemed to have some bad flu or maybe even mono.
Meanwhile, she was being ambulanced to Massachusetts General.
The next morning, we woke up full of anticipation and anxiety. John, Za’s husband, had left a message to call, and when we did, he was a wreck. He confirmed that Za had been moved to Mass General, and added that she was now in a coma-like state, unable to communicate, speaking only in Italian – which neither he nor the nurses understood.
Within a nanosecond, we were checked out of our romantic wedding-night hotel and checked in to what was going to become our reality for the next seven months.
When we got to the hospital, Antonio went immediately to her side, working to understand what no one could comprehend. She was saying over and over, “La testa, ma testa, dolore, dolore,” which means, “The head, my head, the pain, the pain.” I went to the surgeon outside her room to ask what was going on.
I remember how he turned to look at me – I can tell you the way the light hit his face, the way the shadow on the computer screen almost masked what I didn’t want to see; what I remember the most was the kindness in his eyes, the humanity – as he said, “What you are looking at is glioblastoma, and I think it’s stage 4.”