On March 12th 2018, my husband, Stephen, was diagnosed with a brainstem tumor. I remember keeling over when the E.R. doctor told us, after looking at the M.R.I., that he had a mass on his brain. It seemed like our happy life was over. And since then, it’s true that life has changed irrevocably for our family. Following a whirlwind of operations, treatment, rehab, and therapies, we are still navigating our way along the challenging road to recovery. The tumor, thankfully, has shrunk — it’s now very small — but the “collateral damage” is considerable. Stephen’s intellect is unimpaired, but he is in a wheelchair, with slurred speech, swallowing difficulties and a numb left arm.
All my priorities have changed. What’s important now boils down to an appreciation for the blessings in my life, from moment to moment. Stephen, a strong, healthy property manager who loved taking care of everybody (including me, our daughters, and everyone we know), now needs complete care himself. It would have been easy to spiral down into the depths of despair. And there are still times when I feel utterly hopeless, grieving for the life we had. For the most part, however, as I take care of Stephen, I am vigilant about staying present and have avoided drowning in nostalgia. Instead, I use every mindfulness tool at my disposal (including meditation and affirmations) to make sure I have the strength I need.
Here are the six priorities in my life, which are crucial for my own journey but could be just as valuable whatever you are facing.
I have a profound sense of gratitude for my incredible family. Our 25-year-old moved back home to L.A. from New York so she could help take care of her dad. Our 21-year-old daughter, who’s away at college, helps whenever she is home on breaks. I appreciate everything I used to take for granted, from our dog Puck and our lovely neighbors, to my morning cappuccino and the wisteria in our garden. The little annoyances (such as computer problems) that I would get upset about in the past have faded away. I am simply grateful that Stephen is alive. It’s a miracle. I’m grateful that he’s making progress (albeit at a snail’s pace) as he relearns how to walk, how to talk clearly, how to eat, and how to write — it is all about Microsteps. I am bowled over by his patience and courage (he never complains) and by the depth of our relationship. I am hugely grateful to our brilliant neuro-oncologists, Dr. Santosh Kesari, Dr. Jose Carrillo, and their team at Providence Saint John’s Health Center here in Santa Monica. I am grateful for our fantastic caregivers; I have a new respect and awe for the job and what it entails. I am grateful for our family and friends back in the U.K., where I grew up, who come to visit us regularly. And I am grateful for our close-knit community, our friends who come over every weekend, have dinner with us, and make us laugh.
Having a laugh
On that note, laughter has become a priority, I’ve discovered the value of maintaining a sense of humor, even or especially when dealing with cancer. While we watch a lot of politics (too much I’m sure), we also watch a lot of comedy. Our current favorites are: “S.N.L.,” “Patriot Act with Hasan Minhaj,” “Catastrophe” and “Fleabag.” And despite Stephen’s formidable difficulties, we often end up in hysterical laughter over nothing at all.
My work is one of the biggest blessings in my life. I’ve been a journalist for many years, and my writing has a different resonance now. It transports me into the worlds of the people I am interviewing and the stories I am writing; I forget all about my own problems for a while. As a writer for Thrive, I have a sense of purpose beyond my family and our challenges — which is a good thing. It’s inspiring, engrossing and fun, too.
At first, when we were living in the intensive care unit, then the hospital rehab, for weeks on end, I didn’t care at all about myself. Naturally, everything was focused on my husband as I existed on adrenaline, unable to sleep, eat, or do anything much beyond what I needed to do to assist him and pay the bills. Now, I’ve realized that in order to care for Stephen, I need to take good care of myself — body and soul. So sleep has become a top priority. Winding down in the evening and getting seven to eight hours gives me resilience and energy. It keeps me from sliding into a self-indulgent, “poor me” frame of mind and helps me remain optimistic. I cook, shop at the local farmers market, eat well, and make sure I have some time every day for Pilates, cycling, swimming, or a walk. It sounds like a cliché, but with good sleep, nutrition, and exercise, I feel more patient, calm, and steady.
Music has become a big priority, whether it’s Lizzo, Beethoven or Bob Dylan. Rather than starting the day with news, we listen to our favorite classical music. More often than not, it’s Rachmaninoff’s Piano Concerto No. 3, played beautifully by the extraordinarily talented Anna Fedorova, who has become an early morning “friend,” introducing the piece delightfully on YouTube.
A higher purpose
I’ve always had a spiritual perspective, but now it’s stronger than ever. I have an inner knowing that everything is meant to be, for a higher purpose, that somehow this journey is unfolding perfectly and that things are going according to plan. It is about healing, even though at times it feels like exactly the opposite. I know that miracles are happening — my job is to keep a positive focus. On a practical level, for me that means a regular meditation practice, prayer, uplifting reading — and writing. Perhaps the most valuable spiritual lesson I’ve learned is to prioritize today — now. I’m acutely aware that today is all we’ve got, and I am making the most of it.
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