I survived brain surgery and the American health care system

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“You have a brain mass” is not what I expected to hear from the orthopedic doctor I have seen for 10 years. My appointment was supposed to be about a pain in my shoulder that started last fall, following a car accident years ago.

Of course, I had had increasingly painful headaches radiating to the lower left side of my head and difficulty swallowing a few times, but like many people, especially during the pandemic, I had postponed 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 brainstem. I needed an operation. A brain tumor. Surgery. In the midst of a pandemic.

It was not in my plan. It was December 2020, I was doing polls before the special election in Georgia, I couldn’t wait to celebrate the new administration, to think about the next steps in my career, my job at CNN, maybe a vacation.

As I absorbed the severity of my diagnosis, my mind shifted into high gear trying to think about what to do next. First of all, find someone to take care of my dog. Then find a neurosurgeon, schedule doctor’s appointments, get 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 the surgery. What if I’m not “me” on the other side? While trying to figure out that I was 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 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 a weakness, how it can fuel stereotypes and be instrumentalized, especially in our current media environment. As a policy consultant and communications strategist, I have spent time with clients helping them understand how to effectively manage and communicate around vulnerabilities, real and perceived. As a commentator, I know how to analyze them.

Brain surgery was completely new territory. I quickly realized that I wouldn’t be able to prepare, survive, and recover from brain surgery without being prepared to be vulnerable, to rely on my friends, family, and faith. Accept that I couldn’t control the situation, only how I responded to it. I also couldn’t cope with the whirlwind of frightening information, uncomfortable emotions and uncertainty while flying solo. One of my heroes, researcher and author Brené Brown, 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 before the surgery and even now, with the surgery behind me, is one of the hardest things I have ever had to do. I was worried about worrying people or putting a tremendous additional burden on them in the midst of a pandemic that had already claimed so many lives.

I worried that my situation was revealing to them their own vulnerability – and the frustrating limitations of 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 people I didn’t have a chance to speak directly would understand. It was like an emotional “drop in confidence.”

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

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

Two amazing friends who had had brain surgery generously gave me advice, connecting me with essential resources before and after the surgery. Because my operation took place before the large deployment of the vaccine, I “reunited” with a family I am close to. They partially put their lives on hold, took me with my dog ​​Mabel to their home and literally treated me for over a month after the operation. They helped me ask a lot of questions.

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

I am very grateful to the neurosurgery team at Johns Hopkins Hospital who removed my tumor and continue to help me heal, to my otolaryngologist, nurses and specialists who took care of me and most importantly to the clinical technicians who changed my sheets, helped me keep clean, get up and walk around and check my vital signs every four hours like clockwork.

It was a complicated operation and although it was largely successful there were complications. The critical nerves that control the complexities of swallowing and my left vocal cord had to be pushed aside to remove the tumor. As a result, for about two weeks after the operation, I couldn’t even take a sip of water. I couldn’t eat. It was difficult to speak.

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 began outpatient therapy where I relearned how to swallow, eat and strengthen my voice. My speech-language pathologist is a warrior who has helped me come a long way over the past eight weeks.

Even for someone like me, with good health insurance, surviving the health care system has been incredibly difficult. Just as we must develop quality, affordable and accessible care, we must also reintegrate “care” into our health system.

This does not mean that the people in the system – doctors, nurses, clinical technicians, people from different departments who schedule appointments, surgeries and procedures, residents, maintenance staff, MRI technicians – or the insurance claims staff who decide whether or not to approve a procedure or a claim – doesn’t care. They absolutely do. But in the current setting, multiple factors can make it unnecessarily difficult for these people to provide the care that they want or that patients actually need.

The health care system can also be overly complicated, redundant and at times irresponsible. A doctor five minutes late for rounds – the daily time allotted to visit recovering patients in hospital – may then have only two minutes to answer a patient’s question overnight again when tours. A lack of coordination of care between departments can send a patient running days before surgery to find a location that can perform specific pre-surgical tests in time to get them to doctors and make sure they’re covered, too. by insurance. The examples are endless.

As a patient with a support group, even with all the help, expertise and resources available to me, engaging with the health care system has been and continues to be frustrating – and at times dehumanizing.

After almost 12 weeks, with the surgery behind me, some friends and colleagues thought I should wait to get back on air and speak in public until my voice was completely healed. To be honest, we don’t know when it will be. And I’m trying to have the courage to show what healing looks and feels like while I’m still in the middle, fighting for what my life will be, now that I’m on the other side of surgery. brain tumors.

I was grateful to join “The Lead with Jake Tapper” last Friday. It was fun to talk politics instead of diaphragmatic breathing and phonation. A friend across the aisle sent me a note afterwards to let me know that he thought I hadn’t missed a thing in my analysis, even before I learned that I had suffered. brain surgery. I’m doing great, getting stronger every day as I continue to heal. The tumor was benign, but I will still need an annual brain scan.

The scar on the left back 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 article and share my story. I am deeply grateful to my friends, family, colleagues and CNN family for the continued support, prayers, help and love throughout this journey. I literally wouldn’t be here without them.

My message is as follows. Whatever the challenge, find your village – the people who care about you will be happy to be invited to help. Let them see your vulnerability. Let them hold it with you. Let them speak for you when you can’t do it yourself. During the journey you will discover a depth of connection and friendship which is the most powerful medicine of all.


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