I’m writing this in all openness for my friends, family and those who care (I mean it ;-). If you don’t know yet exactly what’s going on or aren’t fully up to date, I recently have been diagnosed with “NF2”. It’s a genetic mutation that causes tumors to grow on certain types of nerves, most typically the hearing and vestibular nerves. You’ve probably never heard of this before, like me about 9 months ago. The way I found out about it is by slowly loosing my hearing on my left side. Through MRI scans the doctors eventually found that the cause is a tumor on the left hearing nerve, called an “acoustic neuroma”. These kinds of tumors are benign and generally slow growing, but they can do harm by damaging the nerves they grow on and the nerves around them.
Over the last 1,5 years I’ve lost my hearing on the left side and more recently the doctors also found a very small tumor on my right hearing nerve and one in my spine. Since the left tumor is growing and my hearing won’t come back anyway, they will surgically remove it coming Wednesday, the 21st of Oktober.
Although this seems all dramatic, I’m not looking at it that way. It’s something that happens and it is really beyond my control. What matters for me is finding out in what way it makes sense to me, and how I might turn this around and gain strength from it. On the upside, since the tumors are slow growing I’ve got a lot of time to figure things out before they potentially start impacting other functions.
Truth be told, the sudden roller coaster of loosing your hearing, developing a permanent tinnitus, the discovery of the tumor, followed by the discovery of two more and the diagnosis with NF2 is far from fun. Its fucking scary. People that have NF2 could loose more than just their hearing. Some people loose sight, vestibular functions, facial nerve functioning and the tumors in the spine can cause problems of their own. Although all these things don’t have to happen, thinking about it is probably even scary without having the diagnosis, let alone having to face the fact that they might happen to you some day for real.
I am born and grown as a possibility creator and driven to let inspiration, creativity, intuition and my heart guide me. I am very grateful that in some magical way I ended up living in the world’s biggest tech-hub and creative environments, and meeting fantastic people along the way while this has been going on. I get great support and came to a point where I start to feel more clarity. It is not changing who I am, it actually forces me to feel more close to who I am.
I want to live my life to the fullest. All my recent experiences force me to think beyond our physical bodies, and also appreciate the physical body at the same time. It forces me to look differently at our relationships, and actually see how much love and sharing there is around us. It forces me to understand the fences we build around ourselves that stop us from being inspired and feeling more connected, like jealousy, our insecurity and loneliness. We’re only lonely because we don’t give in to the fact that we’re all connected throughout time and space. I have always loved turning problems into opportunities, and finding real-life ways to make them happen.
I am relaxed and really enjoy the feeling of support I receive. I am thankful that the people around me are optimistic, treating me as usual and know that all will be good. This situation is new for me, and for most of my close friends and family around me. I want everybody to know that I’m in great hands, I work with the very best people in the field who know exactly what they are doing.
After the surgery I will not get my left hearing back and they will remove the vestibular nerve as well. It’s worth noting that I’m completely used to having one ear, a slight imbalance and tinnitus — I found that we have remarkable ways to adopt to new situations. Apart from removing the tumor the surgery actually creates opportunities as well, this is what’s going to happen:
- I will get an “Auditory Brainstem Implant”, which will in the future give me some auditory signals, by stimulating the part of the brain stem where the auditory nerve comes in. I will be able to train with this device which will be a backup in case I might loose my functioning ear in the future. It makes me an official cyborg.
- A sample of the tumor will be genetically ‘sequenced’, and the data can be used for exploration. There is so much going on in medical- and bio-tech, and I’m right in the middle of it. Living in San Francisco, the world’s biggest tech-hub, I constantly meet great people that inspire me to participate.
The surgery itself will be another chapter in the book. After I’ve recovered I am continuing to do what I’m passionate about. I’m building a great company that’s all about our relationships and the way we interact when we’re not together. It’s something very important to me and I am super excited about what the team is working on and what we will come up with next.
More in general, “the next big thing” might be happening in the medical-tech. I feel inspired to dive into that as well and connect as many dots as I can. I am very excited about the potential of healing these kinds of conditions; while remembering that what makes us human, one of the most beautiful things in life is being vulnerable. This is a pretty vulnerable time for me, and I’m going into it with curiosity and passion.
Thank you for being with me on that journey,