Currently listening to: People Have the Power by Patti Smith
When I was diagnosed with an immune deficiency at age 11, my doctor told me there was a team down at the National Institute of Health (NIH) that was interested in learning more about my health issues. She never used the word guinea pig but I always envisioned that scenario where there were many doctors in one room poking and prodding at me like I was a piece of meat. Over the course of years—the NIH contacted me many times. I had always declined their offer. I didn't want to own the fact that I had any health problems. I was happy to put a band aid on each individual issue as it appeared but never looked at the big picture.
A few years back, I went to a pulmonologist who had me spend a day at NYU doing testing to determine what was going on with my lungs. In under 24 hours, she found a cyst in my lung the size of a golf ball and immediately told me I needed surgery to remove it. Somehow in just hours of knowing each other, I completely trusted this pulmonologist and believed that surgery was the route I needed to take. She suggested I contact my immunologist to fill her in on these developments.
I remember the call as if it was five minutes ago.
My parents and I were sitting on the couch in my West Village studio with her on speakerphone, and everything she said revolved around rejecting the concept of having surgery. She was only aware of negative outcomes from people with immune deficiencies who had this kind of surgery. The tears were flooding out of me as I went through boxes of tissues.
She suggested we connect with the National Institute of Health because the team there was the most educated on my immune deficiency and personally knew the patients who underwent and struggled with this surgery. We immediately contacted the NIH team down in Bethesda who typically plan patient visits a year out-- and they suggested I come the next day.
The drive down, the hotel-stay as well as visit down in Bethesda was a complete emotional blur to me. The one thing I distinctly remember was the team telling me was that there were really no other sufficient options other than getting ¼ of my right lung removed.
They gave me all the worst case scenarios based on other patients experiences and these were certainly not scenarios that a patient going into this surgery wanted to hear.
My surgery was three years ago today. March 5, 2012.
As I sit here and reflect back on the past three years, all I can think about is how grateful I am. I am so grateful for the support that I have received from my doctors at NYU and for the incredible team of experts at the NIH. I put my life into their hands, trusted them and in turn, made it through a very successful surgery and recovery. They’ve become a huge part of my life and in return, I now go down to the NIH annually to take part in two days of clinical research.
Although I wish I never had to go through such a traumatic situation, it certainly flipped my world upside down in the best way possible. That moment put everything into perspective. I started shifting everything in my life and taking ownership of my health.
I realized that I had choices. I had the choice to continue hiding my health issues and immune deficiency from the world or I could open up and share it. I spent the first 27 years of my life hiding-- and only saw the worse case scenarios – fear, shame and embarrassment. As I started sharing my health story, writing about it for the first time, I realized how empowering that could be.
I felt free of my fear, shame and embarrassment. By sharing my voice and my story, I knew I could raise awareness about my rare immune deficiency and aim to help others who may be suffering.
As much as I thought I knew myself prior to this time, sharing my story made me feel as if hundreds of bricks were lifted off my shoulders and I could finally be authentic. I made this authenticity a priority – in my work, in my health and with my friends and family. I knew staying true to myself was the name of the game.
What I didn't suspect was the outpouring of love and support that I received, in just being me. I was so afraid of showing my true colors and how people would react, and instead when I did finally tell the world my story I felt a sense of acceptance, pride and accomplishment wash over me.
In making the decision to share my story, I realized that everyone has the power to choose how they want to live their life. I often hear clients and friends say “I wish I could do that” about all different aspects of their life. They say it with such defeat and frustration-- but what I realized is, these things they “wished” for were nothing they even attempted to try to make happen. Most people choose to sit around waiting for things to happen – a new job, a great boyfriend and a healthy life aren’t going to magically appear (at least not for most of us). You have the choice to determine the next steps in your life.
If you’re miserable in your job, what is the first step that you need to take in order to change that? If you’re sick and tired of being single, what is the first step that you need to take in order to find your match? If you’re sick of feeling overweight and unhealthy, what is the first step that you need to take to feel better? You have the power to make that choice.
I chose to use my own journey in health and well-being to inspire, motivate, and drive people in the direction of their dreams through coaching. It’s been incredibly rewarding to choose the direction that I want my life to go in while helping other people do the same.