I survived brain surgery–and the American health care system (opinion)

I survived brain surgery–and the American health care system (opinion)

Sure, I’d had increasingly painful headaches radiating from the lower left side of my head, and trouble swallowing a couple of times, but like a lot of people, especially during the pandemic, I’d put off going to the doctor, assuming it was just the stress of Covid life and endless zoom calls.

But there it was on the scans, a tumor pressing on my brain stem. I needed surgery. A brain tumor. Surgery. In the middle of a pandemic.

This was not in my plan. It was December 2020, I was doing polling work ahead of the Georgia special election, looking forward to celebrating the new administration, thinking about next steps in my career, my work at CNN, maybe a vacation.

As I absorbed the gravity of my diagnosis, my mind shifted into overdrive trying to think through what I needed to do next. First, find someone to take care of my dog. Then, find a neurosurgeon, schedule doctors’ appointments, tests, hire a lawyer to update my will and get my affairs in order. How long should I put my mail on hold? I thought about what could go wrong during surgery. What if I’m not “me” on the other side? All while also trying to wrap my mind around being unconscious in a room full of strangers with my brain exposed like in an episode of “Grey’s Anatomy.”

I was overwhelmed. So I did something contrary to the norms of Washington DC’s political culture: I prayed for the strength to be vulnerable.

As a Black woman I know personally and professionally how vulnerability can be seen as weakness, how it can fuel stereotypes and be weaponized, especially in our current media environment. As a political consultant and communications strategist, I’ve spent time with clients helping them figure out how to effectively handle and communicate around vulnerabilities, real and perceived. As a commentator, I know how to analyze them.

Brain surgery was completely new territory. I quickly came to realize I would not be able to prepare for, survive and recover from brain surgery without being willing to be vulnerable, to lean on friends, family and my faith. To accept that I couldn’t control the situation, only how I responded to it. Nor could I face the whirlwind of scary information, uncomfortable emotions and uncertainty while flying solo. One of my heroes, researcher and author Bren√© Brown, has defined vulnerability as uncertainty, risk and emotional exposure. If that doesn’t describe trying to survive brain surgery then I don’t know what does.

Telling my friends both ahead of surgery and even now, with surgery behind me, is one of the hardest things I’ve ever had to do. I have worried about worrying people or placing a huge additional burden on them in the middle of a pandemic that had already taken such a toll.

I’ve worried about my situation revealing to them their own vulnerability– and the frustrating limitations on what they could physically do to help, especially during Covid. I finally shared the news with a small group of friends, family and colleagues and prayed that the people whom I didn’t have a chance to tell directly would understand. It was like an emotional “trust fall.”

It turned out that my “village” sprang into action, and I will forever be grateful from the bottom of my heart. They created a web of support and were willing to sit with me in the discomfort of not knowing how surgery would turn out. They created a rotating schedule to drive me to doctor’s appointments and tests before the surgery and in the first month I was out of the hospital. They prayed with and for me, and helped me navigate all sorts of life logistics.

A mentor of mine joined me as a second set of ears for many virtual doctor appointments as I dealt with complicated conversations about different surgical options and made decisions about the best course of action. A former boss jumped in to offer help and support.

Two incredible friends who’d been through brain surgery generously gave me advice, connecting me with critical resources both before and after the surgery. Because my operation came before the big vaccine rollout, I “podded up” with a family I’m close to. They partially put their lives on hold, took me and my dog Mabel into their home and literally nursed me back to health for over a month after the surgery. They helped me ask a lot of questions.

When I was in the hospital and couldn’t effectively advocate for myself, they politely badgered doctors and nurses on my behalf. They made sure the hospital staff knew that people were watching to make sure I got the care I needed. They and so many dear friends are still with me now on this healing journey.

I am so grateful to the neurosurgery team at the Johns Hopkins Hospital that removed my tumor and continues to help me heal, to my otolaryngologist, the nurses and specialists who took care of me and especially the clinical technicians who changed my sheets, helped keep me clean, got me up and walking around and checked my vital signs every four hours like clockwork.

It was a complicated surgery and while it was largely a success there have been complications. Critical nerves that control the complexities of swallowing and my left vocal cord had to be moved out of the way to remove the tumor. As a result, for about two weeks after the surgery I couldn’t even swallow a sip of water. I couldn’t eat. It was hard to talk.

After 10 days in the hospital, being able to leave meant having a procedure to insert a feeding tube. Within a week of leaving the hospital I started out-patient therapy where I re-learned how to swallow, eat and began to strengthen my voice. My speech pathologist is a warrior who has helped me come a long way over the last eight weeks.

Even for someone like me, with good health insurance, surviving the health care system has been incredibly challenging. Just as we need to expand quality, affordable, accessible care, we also have got to put the “care” back into our health care system.

That is not to say that the people in the system — doctors, nurses, clinical technicians, people in different departments who schedule appointments, surgeries and procedures, residents, janitorial services staff, MRI technicians–or insurance claims staff who decide whether or not to approve a procedure or claim — don’t care. They absolutely do. But as currently configured, multiple factors can make it unnecessarily hard for those people to deliver the care they want to provide or that patients truly need.

The health care system can also be overly-complicated, redundant and at times unaccountable. An over-scheduled doctor who is five minutes late for rounds — the daily time allotted to visit patients recovering in the hospital – may then only have two minutes to answer a patient’s question until the next day again on rounds. A lack of coordination of care between departments can send a patient running around days before surgery to find a place that can perform specific pre-surgical tests in time to get it to the doctors and make sure it is also covered by insurance. The examples are endless.

As a patient with a support group, even with all the help, expertise and resources at my disposal, engaging with the health care system has and continues to be frustrating — and at times de-humanizing.

After almost 12 weeks, with surgery behind me, some friends and colleagues thought I should wait to return to the airwaves and to other public speaking until my voice had fully healed. Truthfully, it’s unclear when that will be. And I’m trying to have the courage to show what healing looks and sounds like while I’m still in the middle of it, fighting for what my life will be like, now that I’m on the other side of brain tumor surgery.

I was grateful to join “The Lead with Jake Tapper” last Friday. It was fun to talk politics instead of practicing diaphragmatic breathing and phonation. A friend from the other side of the aisle sent me a note afterwards to say he’d thought I hadn’t missed a beat in my analysis, even before hearing I’d had brain surgery. I’m doing great, getting stronger every day as I continue to heal. The tumor was benign, but I’ll still need an annual brain scan.

The scar on the back left side of my head and neck from the incision is fading and my hair is slowly growing back. I’m getting used to my new, “smoky” voice.

I am deeply grateful to be able to write this piece and share my story. I am deeply grateful to my friends, family, colleagues and my CNN family for the ongoing support, prayers, help and love throughout this journey. I quite literally would not be here without them.

My message is this. No matter the challenge, find your village — the people who care about you will be glad to be asked to help. Let them see your vulnerability. Let them hold it with you. Let them speak for you when you can’t do it for yourself. On the journey you will discover a depth of connection and friendship that is the most powerful medicine of all.