If I see NF as a disease I am beaten by it. If I see NF as a part of me, it becomes a part of my journey and I can learn from it and grow stronger because of it.
NF2-related schwannomatosis is a genetic anomaly. It is as much a part of me as the color of my eyes or the tone of my skin. If I think of it as a disease I will spend my life fighting it, and in turn myself. If instead I embrace it for what it is, a lesson to be learned from, then it becomes a part of my journey. It strengthens me, it teaches me about pain and suffering, Love and kindness, compassion and what it means to truly embrace others for who they are.
When I was growing up I saw life through the eyes of a child and had no real idea of what life was all about. I dreamed about the material comforts rather than the mental or spiritual comforts that I now call happiness.
There have been moments throughout my life that I thought this would never have happened if I did not have NF2-related schwannomatosis. After college, I chased after the material things. I was on the fast track for a bigger office, a bigger title on my business card, a larger house, a faster car. When I learned I would lose my hearing to an acoustic neuroma, I thought “okay, well this was not what I had in mind, but okay, I’ll get back on my feet and start over again.”
I went through my first brain surgery, lost the hearing on my right side, suffered through rehabilitation and started my life over again. The doctors told me I would have trouble walking for the rest of my life. I was in the martial arts at the time and was doing spin kicks by the end of my first year. I did that through meditation and taking tiny little baby steps until I could stand on one leg, kick on one leg, before moving up to spinning slowly, then faster, then faster still.
By my ninth brain surgery, the novelty had run out. In that time, I created my own agency that had just tipped over $1 million. I was aware I had NF2 but was determined not to let that stop me. All of that came crashing down in 2009 when I learned I had seven brain tumors. I had four weeks to let my clients and employees know that it was over. That was the surgery that really crippled me. That was also the surgery that told me I had to get off the fast-track to no where and change my life from the inside out. I wrote a book about my experiences called The Simple Truth: Meditation for the Modern World and began teaching meditation.
Through all of this, what I wish people understood is that the surgeries were never the most difficult hurdle to overcome, it was the rehabilitation. It was taking the time and spending the months and years to learn to write again, speak again, walk again, think again. That while NF2 is a part of my life, I will never allow it to define or limit me, just as I will never allow the color of my eyes, my hair or my skin define who I am.
Once I accepted that there are no bad events in life. There are only events. The only time a bad event happens is when I don’t learn from it. As long as I can learn a lesson then whatever happens becomes a positive part of my journey. Learning this was one of the greatest struggles for me, and even this lesson turned into a part of my journey I carry with me into whatever life presents. And this is what I wish I had known as a child – that no matter what happens, no matter how bad things get, those events are not a part of you, they do not define you unless you allow them to. They are merely lessons to learn from and to apply to your future – because there will always be a future.
I was very fortunate, I did not see the effects of NF2 until I was in my late 20s. After that moment though, I had to completely rebuild my life nine times over. It interrupted my career path, my hopes for children and for marriage, it pulled the rug out from under me for creating a stable retirement plan, for world travel and for the things most people think are important.
It also taught me about what is truly important. It taught me the idea of work/life balance only works when work is a part of your life, not a defining element in your life. That designing your life around what you love is more important than what your salary or job title is. That having a huge home or fast car is actually less important to your happiness than curating your life around those things that truly matter, and that if your friends laugh at the things they think set you back, then they are truly not your friends.
At first I felt as if NF2 was a curse that prevented me from getting the things I wanted. Then I realized those things were not what I wanted. What I wanted was the love, respect and security I thought those things would give me; that if I was honest with myself and just went straight for the things I wanted – Love, Respect, Security – life would be that much simpler.
In many ways this is my advice for, not just the NF community, but for everyone, be true to yourself. Find out what your own Simple Truth is, both genetically and based on your upbringing, and follow it. Think of it this way, I love to swim, but I was not born with a swimmer’s body. Genetically I do not have the shoulders or passion of Michael Phelps. This does not mean I cannot go out and swim in the ocean or on a lake. It only means that if I base my happiness on winning a gold medal I will, in the end, be a very unhappy man. If instead I base my happiness on enjoying the water, then I have a much better chance at being happy throughout my life.
In the same way if I try to deny my upbringing or my NF2, then I will likewise be a very unhappy person. If instead I embrace both as a factor that makes me who I am, then I have a chance at being very happy. Brought together these are what I call my own Simple Truth – an acknowledging and living my life based on my own Simple Truth is the most direct route to living a happy and contented life no matter what the world throws at me. And yes, this is both my philosophy and motto in life. It is also my way of giving back to the NF community.
The only way NF wins is if you struggle against it. If instead you accept it as a part of who you are because it is a part of who you are, then you may not win against a non-NF society, but why would you want to? You are a valuable and beautiful part of society, as am I. Sure I’m deaf in my right ear, I have an expanded blind spot in my right eye, I walk with a limp and use a walking stick, I have peripheral neuropathy and, from what I can tell, a shortened life span, but none of that keeps me from teaching meditation, running a business I am passionate about, writing books that people value, teaching people to enjoy their lives through my experienced and leading walking meditations that teach dozens of lonely souls to slow down, take a moment and truly value themselves and their own simple truths.
As Einstein said, if you judge a fish based on its ability to climb a tree, it will live its whole life believing it is worthless – and nobody is worthless.
Jeff Cannon passed away in September 2021 at the age of 57 years old. He lived with NF2-related schwannomatosis. Jeff was an author, teacher, and founder of The Simple Truth Project.
