Dare to be Kind - Sneak Peek
Starting when I was just a little kid, I always wanted to make my parents believe I was fine, and nothing was wrong. They’d had enough to worry about since the moment I was born; I didn’t want to add to it by complaining about anything, big or small.
Over time, I even began looking at it as my main job in life. Motivational speaking might be my career, but it was my job to stay positive! Positivity has always come easily to me, and it dovetails perfectly with my career. I feel obliged to present my audiences and fans with my personal example of emotional resilience, to show them they can stay strong in the face of their own struggles.
But I am very aware of the fact that I can’t help anyone unless I help myself first. For me, it feels so much easier to help other people than it is to help myself. I would so much rather focus on that! That’s why I developed my just-ignore-it strategy for dealing with anxiety. If I could pretend I wasn’t having those feelings, then I could push forward with my work and my mission.
When it comes to conflict or problems or anything else that’s scary to me, I’m the same way: I brush it under the rug, so I don’t have to deal with it until it explodes—or, preferably, until it disappears on its own! I definitely don’t think this is the best strategy for dealing with fear, stress or anxiety, and it’s not something my parents taught or imposed on me. This is just the way I learned to handle things over time.
Whenever I’ve approached my parents with a problem that I needed to talk through, they’ve been amazing about helping me out with it—but that hasn’t happened very many times, because I don’t like to let them in on my problems. My own weakness and vulnerability embarrass me. For some reason, over the years, I’ve saddled myself with this crazy expectation to be strong for everyone. That’s why I can’t acknowledge it when I have anxiety or doubts about myself: If I do, then I’m failing at my job. And I can’t let that happen. I have too many people looking up to me to let them down.
Not everyone works as a motivational speaker, as I do; not everyone is in the public eye in the same way that I am, or has to so carefully consider the face they present to the world. Still, I don’t think I am alone in this instinct to sweep problems under the rug and put on a bright face, even, or especially, during difficult times. It doesn’t matter who you are or what you do for a living: I can almost guarantee that you receive messages constantly, from all sorts of sources, about the power of positive thinking and the importance of staying positive no matter what adversity you might face.
Staying strong is definitely an important value to learn. Finding success absolutely requires the ability to overcome challenges and adversity. But at the same time, there’s also reality: real life, real experiences, real emotions. Sometimes you just feel down, no matter how much you might try to pep yourself up.
One thing I’ve really struggled with is how to be strong and inspirational for others while still acknowledging that life can be really hard sometimes. I am constantly trying to balance the two, because it is so important to me to be honest and realistic about the way life truly is. I’m living it, just like you are. I’m sure you’ve been through some really hard times. I know I have, and I know I will again, because that’s what life is all about: peaks and valleys, highs and lows.
In the midst of all that was when we received my diagnosis of Neonatal Progeroid Syndrome. Looking back, it seems strange to me that I stayed so calm during the meeting with my doctors when we received my diagnosis. As we listened to my genetic doctor, Dr. Atul Chopra, explain the ins and outs of my condition, I remember being filled with the sense that having this extremely rare condition was my destiny. My parents didn’t do anything that caused it. It wasn’t something genetic they had passed along to me. As incredibly rare and unlikely as it was, it had simply happened spontaneously. And it had allowed me to help others who were born different.
I remember sitting at a large table in a conference room as Dr. Chopra explained all this complicated medical stuff about sequencing my twenty-thousand genes and looking for mutations. He told us I had a “bad copy” of the FBN-1 gene, which affects my eyesight. Instantly, I thought, It’s not a bad copy—it’s just my copy. I still feel that way: My body and my genetic makeup are neither bad nor good. They’re simply, uniquely mine.
I was following along with everything Dr. Chopra was saying, yet I couldn’t help feeling like I was waiting for the other shoe to drop. Where was the bad news? I knew it was coming. It had to be. But so far, my doctor was talking mostly about things I already knew about. He and my other genetic doctor, Dr. Garg, had both always suspected I had lipodystrophy, though at that point, it hadn’t yet been confirmed. So when Dr. Chopra confirmed that was part of my diagnosis, it didn’t come as a surprise.
But then he mentioned the terms Marfan Syndrome and Neonatal Progeroid Syndrome, and started listing off possible complications, including problems with my heart, bones, and vision.
There it was: The other shoe had dropped.
As he went on telling us about problems with my aortic valve that could result from my condition, I was filled with unease. What might happen to me? What else might he say? How bad was this diagnosis going to get?
Since I am a big believer in fate, it all started to make perfect sense. In that moment, it seemed clear that a very unique and unusual kind of gift had been given to me, and I was meant to use it for something important.
The thing that’s so interesting about that to me now is this: My first impression was the truest, clearest thought I could possibly have had about my diagnosis. But almost instantly, fear and confusion crowded in, drowning out that inner sense of peace and certainty.
I confided in Sara a lot about my concern with no longer being the Undiagnosed Girl during the filming of our documentary. I’d had so many worries leading up to that doctor’s visit. I’d done so much crying with Sara but always off-camera. I definitely wasn’t ready to open up about it in front of anyone except close friends.
Sara encouraged me to stay positive and promised no one would think less of my story because of the new diagnosis.
But even though wise, caring people in my life were telling me something I knew, deep down, was correct, I couldn’t feel the truth of it in my heart.
Leading up to that meeting with Dr. Chopra, my anxiety just kept ratcheting up, higher and higher. I had so many crying sessions, both alone and with my closest friends, because I was so fearful that soon, no one would care anymore what I had to say. For the first time, I couldn’t put on the mask of positivity. I had to admit it, I was scared.
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