What Two Brain Tumors Have Taught Me About the Future of Care
May marks an important time in my life: It’s Brain Tumor Awareness Month. I’ve always been very open and willing to talk about my two brain surgeries — one in 2007 and a second in 2013. Sharing the experience helped me to express the flood of emotions I was feeling — fear, uncertainty, frustration, regret, acceptance; it helped me to regain confidence in my neurological abilities and, ultimately, to heal. Being able to articulate the challenges I faced made me more resilient, a trait I am especially thankful for today.
Similar to how I was feeling at the beginning of this year, life in 2007 was busy, work was satisfying, and I felt in control. But everything started to turn upside down as I returned from an international business trip to appear on the U.S. morning show “Good Morning America.” The show went fine. It was a comment from a makeup artist that changed everything. A mention of a drooping eyelid. Thank goodness for candor and directness. I took the comment to heart and called an eye doctor immediately, which ultimately led to a CT scan and then to Massachusetts General Hospital, where I had a craniotomy just months later.
Thankfully, I recovered fully and was back to life as I knew it in surprisingly quick fashion. Fate had more in store, though. In 2013, following a routine annual scan, my doctors again shared the news that they had found a brain tumor. Hearing the pronouncement a second time was wrenching, but I knew I had gotten through this before and would be able to again.
I’m grateful that during both occasions, I was able to focus on my work. It kept me at ease, helped fill the time, gave me something to worry about other than myself, and allowed me to use my brain instead of just obsessing about it.
Looking back, I can see the many positives from those times, but I won’t pretend I didn’t struggle or sometimes feel overwhelmed by stress. Acknowledging my anxiety and trying to assert some small measure of control took many forms, from obsessing over YouTube videos of doctors performing craniotomies (I’ll do you the favor of not hyperlinking to these) to fussing over my insurance policy.
As I shelter in place from the COVID-19 pandemic with my partner and dogs, I find myself relying once more on the resilience I developed to handle those tumors. Like so many millions of others, my life as I knew it took a tailspin in late March when we were asked by officials to stay indoors. (First, I had to figure out how to make my way safely from Switzerland to the U.S.) A combo platter of fear and uncertainty has led to an overload of stress and anxiety. In the U.S., the Substance Abuse and Mental Health Services Administration reported a nearly 900% increase in calls to its Disaster Distress Helpline in March compared with the same period last year. In Italy, staff managing a Red Cross psychological support center are overwhelmed with calls. Experts warn this is just the beginning.
One thing my experience with brain tumors taught me was that I had to surrender to science and to the medical professionals who knew best how to help me get through the experience. The same is true today. We need to rely on the scientists, the epidemiologists, and the other experts who are working hard to provide us with accurate information as they endeavor to develop treatments and vaccines. At a time when trust is in short supply, I am relieved to see that health authorities and expert sources are very highly trusted by almost everyone, as a recent study by Reuters Institute and Oxford University shows.
Paradoxically, people have become less inclined to consult with these trusted experts during the pandemic, with many doctors reporting a significant drop in outpatient visits for conditions unrelated to COVID-19.
“Bizarrely, I am personally much less busy. Many patients have stopped calling about their more minor complaints of sore throats, aches and pains, etc., partly out of respect for the crisis and also out of fear of coming to the office and risking contact with COVID patients,” said Dr. Caroline Annesley, a general practitioner in the U.K.
Yes, doctors are pleased to hear patients are respecting the guidelines and staying at home, but they’re also worried about the consequences. Enter: telemedicine. Although telemedicine has been around for more than 20 years, it has had relatively low adoption rates. All signs point to the COVID-19 crisis finally bringing it to the mainstream, as patients and medical professionals seek to connect without coming into physical contact.
“Since early March, I have been spending more time consulting on WhatsApp than doing anything else,” noted Dr. Nancy Mufarrij via email when asked how the pandemic was impacting her dermatology practice in Beirut, Lebanon. “I think human interactions in general have changed and will do so even more going forward. Everyone has become more wary of the face-to-face interactions, preferring a virtual call or text. In fact, many of my scheduled patients are just canceling and waiting to reschedule until things get clearer.”
Dr. Mufarrij also noted the challenges of the virtual office: “In the beginning it wasn’t easy. Infrastructure in my country is not optimal, internet connection being quite slow, and electricity cutting every five hours has not helped.” A stark reminder that while prevalent, global internet use and access are not ubiquitous worldwide.
Knowing I can connect with my doctors, especially those based in the U.S., while I’m living abroad in Switzerland or traveling to wherever (remember travel?) is certainly reassuring. But I can’t help but think of the makeup artist who saw a change in my face and prompted the calls, doctor visits, and scans that ultimately led to the detection of my first brain tumor. Today, we need science, innovation, and technology to lead us into the future, but we can’t risk leaving human connection behind.