I spent my Friday going from one test to the other at NYU Langone Medical Center; poking, prodding, machines, bad attitudes and repetitive questions. I was tired of taking off my black cotton leggings and grey sweater to replace them with a light blue hospital gown — one that had probably been worn by people much sicker than I was. Toward the end of the day, my mom and I sat in the waiting room anticipating the results. We sat together quietly, sweating, fidgety and with few words to share. Finally, Dr. Roberts pulled us into her office. She seemed relaxed when she told us that the x-ray and blood work didn’t show anything. My mom wrapped her arms around me and exhaled a big sigh of relief. I wanted so badly to feel what she was feeling, but I knew it wasn’t true. I wouldn’t have spent a whole day being poked and prodded over nothing. Something was going on in my body.

I was lying in my bed the next morning when my cell phone rang. It was Dr. Roberts. “Are you with your parents?” She suggested I get them on the line before she said anything further. My parents were at the gym and I couldn’t reach them. I asked her to tell me without them there, even though her voice told me that she didn’t have good news to share. “You have a cyst the size of a golf ball in your right lung and it needs to be removed immediately,” she said. “We don’t know how long it’s been there or how it got there.”

I wanted so badly to scream or curse but I couldn’t find words. If Dr. Roberts kept talking, I don’t actually know what she said. I hung up the phone and called my mom over and over again until she picked up.

“Mom, you need to call Dr. Roberts immediately, I have to have surgery, I have to have surgery,” I screamed.

“What? The results were great yesterday. What do you mean?”

“I don’t know, I just know that she said I have a cyst and I need to get surgery. It’s bad. I can’t believe this. How is this happening?”

My parents called Dr. Roberts to clarify what I’d been told as they jumped into a taxi to my apartment. I cried my way through one tissue box after another as we tried to process what we’d heard. My mom and I had just met Dr. Roberts for the first time yesterday and we completely trusted her, but we also knew how important a second opinion could be.

We sat in disbelief after calling Dr. Charles, the immunologist who had diagnosed me with a rare immune deficiency called Hyper-IgE/Job Syndrome 16 years earlier. “You can’t have the surgery, we’ve had really bad cases of people with Job Syndrome having this surgery,” she said. Was she serious? The surgery that one doctor said was critical, another said was dangerous? I wanted to throw my phone out the window.

Dr. Charles suggested that we travel to the National Institute of Health (NIH) as soon as we possibly could to meet with the infectious disease department. This wasn’t the first time I’d heard about the NIH. The head of the department had wanted to work with me since I was a teenager. I had politely declined for more than a decade because I didn’t want to be specimen; I was determined to live a normal life without letting my immune deficiency define me. But this time was different. I instinctively knew that going to the NIH was what I needed to do.

The very next day, my parents and I drove down to Bethesda, Maryland to visit the NIH. It was the quietest car ride that we’d ever had because nobody knew what to say. For a family who loves listening to music — no artist could provide us with the comfort that we needed at that moment. I’d only just celebrated my 27th birthday and couldn’t believe this was my life. I had faced health challenges before, but they were all manageable and non-life threatening. None of it seemed possible or real.

We met with the head of the department and his team before another day of poking, prodding, machines, bad attitudes and repetitive questions began. It wasn’t long before we had results that showed that Dr. Charles was right — the operation was incredibly dangerous. “There are a lot of really bad cases of people with Job Syndrome who ended up with chest tubes for life and others who have died from this surgery,” confessed the department head as my heart sank and fears grew.

Despite that, the doctors agreed that I had to take the risk and have the surgery. The other options for handling a diagnosis like mine couldn’t get to the core of the problem. In that moment, after so many years of completely rejecting the team at the NIH, they very suddenly gained access to my entire life. This would become more significant than I could ever imagine.

On March 4, 2012, I gathered a bag of GAP Body cotton pajamas, slippers and an assortment of skincare products that I hoped I would be able to use after the operation. Pregnant women always have their hospital bags prepared; my body was changing too, and I desperately wanted to find comfort. I couldn’t stand to sleep alone at my apartment the night before the surgery so I went to my parent’s apartment. I laid down on their couch, my dad came over, rubbed my head and assured me, “Everything is going to be okay.” But I knew that he didn’t really know that. This wasn’t a minor thing like a bruise or scrape where a father could comfort his daughter. We didn’t know if this would have a good outcome.

The next morning, I woke up in the recovery room with my parents, aunt and Dr. Roberts standing over me with huge smiles. The surgery had been a success. The surgeon, ecstatic with the positive outcome, told Dr. Roberts that I was a really rare case and he wouldn’t have trusted anyone else to have performed the high-risk operation on me.

After surgery, I moved from the recovery room to the ICU for 24 hours. I slowly and carefully put on my soft grey t-shirt and black pajama pants. I don’t remember much else except using the clicker for more morphine. The nurses came in every few hours to check my temperature and blood pressure. I felt relieved that the surgery had gone well, but I knew that a full recovery was going to be long and painful.

The next day, I was able to move out of the ICU and into a private room on the pulmonary floor. I spent a few days recovering while my mom tried to sleep in an uncomfortable leather reclining chair draped in hospital linens. She kept tabs on every single person who came into the room and interacted with me. “What’s your name? What do you do?” she would ask as she jotted it all down in her mini notebook. “They just gave her that medicine a few hours ago, are you sure that she needs it again?”

My close family and best friends came to visit. Momofuku chocolate chip marshmallow cookies, flowers, cards, and Second Avenue Deli matzoh ball soup arrived daily. When two of my best friends came for a visit, I tried to walk from my bed to a chair that was just a few feet away. It was nearly impossible. I was walking like a turtle while wishing I could run far, far away from my life. The look of defeat on my face was obvious and everyone tried to be extra encouraging. I knew that even with their incredible support, I had to take the steps on my own. This was my battle to fight.

I was discharged from the hospital nearly a week after my surgery. The native New Yorker in me had a really tough time accepting that it would be months before I would be able to walk several miles a day again. I didn’t have the strength to open a window to cool down my apartment or to pick up my Brita pitcher and pour myself a glass of water. Recovery took longer than I thought it would; I had to take medical leave from my job where I was launching a new department at a beauty PR firm.

Two months of medical leave later (and finally off of morphine), I was able to walk and go back to work. But instead of being happy, all I could think was how I didn’t care about what I was doing for the company. I had reached a new place where I knew that my health and well-being needed to be my priority. The more I thought about it, the more I realized that my role with the company I’d been working for wouldn’t allow me to take care of myself and that I had to take matters into my own hands.

I hired a career coach to help me start exploring other ideas and opportunities. As we went through the list of companies that I hoped to work for, I realized that the one thing that really stood out was my desire to give back in my job. I wanted my new job to have more impact than what I could accomplish when I was just promoting a product like the nail polish, which was what I was responsible for at the time.

A few months after working with my career coach, I accepted a new job as managing director on a small team that produced events and handled marketing for mission-driven brands and nonprofit organizations. Unlike my previous job, this job allowed me to make my health a priority and I took full advantage of that opportunity. I practiced yoga several times a week; I ate healthier; I stopped drinking; I learned how to meditate and made it a fulfilling, daily practice. I became more mindful and I slowed down. I was a happier, healthier person, and was glad that I’d taken the time to work with a coach and analyze the types of ideas and opportunities that were best for me.

While I loved my new job, I soon realized that my ideal career required another huge leap: I wanted to start a business of my own. Being in a professional setting where I collaborated with individuals in the personal development space, going through my health scare and surgery helped me to see that I’d actually been coaching my friends and family my whole life — just without the title and certification! After my firsthand experience working with a coach, my eyes were opened, and I was empowered to become the best version of myself so I could help others do the same. I went through training and received my certification to become a life coach, and these experiences only confirmed that coaching was a perfect fit for my personality, my lifestyle, and my goal of giving back in my job. I launched my business as a business and career transition coach in December, 2014 and I haven’t looked back.

Today, I work with clients who want to live healthy, happy, fulfilling and balanced lifestyles, all while I am maintaining my own. I have the freedom and flexibility to take care of my health and well-being without having to report to someone else. It took an unfortunate health scare to completely turn my life upside down, but when I look back now, I can see that it might have been a good thing. Since that terrifying diagnosis five years ago, I have gained true clarity on what I am meant to be doing with my life and where I should be focusing my time. I’m right where I should be, doing what I need to do, while helping others do the same.

**Some names and identifying details have been changed to protect the privacy of individuals.

Originally published at medium.com


  • Harper Spero

    Business Coach & Host of Made Visible podcast

    Harper Spero launched her business as a lifestyle management coach, switched to a career transition coach, and ultimately found her niche as a business coach for individuals who are 0-5 years into launching their business. Working with many different types of clients helped Spero determine what she enjoyed doing the most, and that’s working with individuals who want to live, work, and earn on their own terms. In July 2018, she found a new way to merge her interests with her career. She launched Made Visible, a podcast that shines a light on invisible illness by talking to people who experience it in all kinds of different ways: as patients, as caregivers, and as family members.