Kili Kickoff Speech - Our May NF awareness event

This evening was our Kilimanjaro trek for NF2 kickoff party at the Seattle downtown REI. My husband and mother-in-law did a marvelous job with the planning as well as presenting. Harley really took me by surprise giving a very professional look at the disorder complete with MRI images of my brain and descriptions of the surgeries that become necessary to intercept the life threatening danger cause. Cheryl, wrote a touching account of how I have imprinted on her a zest for life while outdoor photos they selected of me scrolled through on a screen in the background. Tim O'Brien, our trek guide, delivered a spectaculor overview of our trip plans as well as a wonderful slideshow illustrating our exact planned route. In the midst of all these fabulous speakers, it was my job to give a 5 minute speech about my story, what compelled me to undertake the challenge of climbing Kilimanjaro, and what inspires me to keep going. While I gave my talk, another slideshow ran through the numerous photos from other NF2 patients. Below are the words I shared. I hope you enjoy! Thank you to each person who played a role in contributing to our event this evening!

Thank you everyone for showing your support by joining us this evening. Your encouragement and enthusiasm will keep us motivated as we train to reach the top of Africa. We are very grateful to all our sponsors who not only believe in us but share in our vision to find a cure for NF2.

By the way, prior to learning of this event or getting to know me, how many of you had heard of Neurofibromatosis before and understood what it was?

If the name is new to you, you are not alone.

In 1999 following an MRI scan of my brain to investigate my unexplainable hearing loss, I was told I had Neurofibromatosis Type 2 or NF2 for short.

“Neuro what?” We could barely pronounce the name let alone spell it.
Despite that I have a science degree and my mom is a nurse, we had never heard of this NF nor seen it in any science or medical books we had come across. While we were relieved that I cleared all the tests for a cancer relapse from the Hodgkin’s Lymphoma I had in 1993, it was not at all comforting to learn that my numerous brain tumors were going to grow at an unpredictable rate for the rest of my life. Further, it was incurable and most likely would result in complete deafness.

Just those 2 facts were a tough pill to swallow as a young adult. As I later discovered, the hearing loss and deafness were the easy part.

Being an avid nature buff with an insatiable passion for mountains and the sea, 10 years ago I conceived of the idea to climb Kilimanjaro. It was my dream to raise awareness and support for research by becoming the first patient with NF2 in the world to make it to the summit.

Unfortunately, the unpredictability of NF2 began causing serious problems in late 2004 which crushed my dream at the time as well as robbed me of the ability to do several activities I love. In 2005, I could no longer partake in my passions for hiking and diving and my eyesight was in grave danger.

By the grace of God, time, hard work, and very skilled hands 2 brain surgeries later, I have finally been able to return to hiking and diving again. I feel blessed that I am of the very fortunate minority to regain some function and even consider such a feat as Kilimanjaro.

Living with NF2 can be pretty emotionally difficult and the complications life altering. I am often asked how I get through it and keep such a positive attitude. Admittedly, this was not always the case. During the most challenging of times, I sought comfort in the strength of Christopher Reeve and the optimistic words of Michael J Fox as they succumbed to traumatic events which permanently changed life as they had known it. I admired their perseverance in turning their tragedies into an opportunity to serve a cause for those less fortunate. Such an ideal is what kept me hanging on when things seemed most unbearable.

As I was starting to recover a year after my 2004 radiosurgery, founder Sean Swarner of Cancer Climber rekindled the flame of hope in my heart. I was incredibly inspired to learn of his accomplishment summiting Everest with partial use of his lung that was ravaged by 2 childhood cancers, one of them being the same that I had! But summiting Everest was not the reason why I had so much respect for him. It was because he did it to share his story to help others living with cancer. He overcame adversity for a purpose greater than himself to help others. Upon reading about his story, I told my husband I wanted to instill in others that same hope and inspiration which moved me. In other words, I set my sights on “paying it forward” as my goal in life.

So for the next 5 years that is what I have been working up to as a charity endurance athlete. I have been working out at Gold’s Gym since 2007 which has helped me to make MAJOR strides in my strength and balance. We are talking about going from falling over if I closed my eyes to completing 20 hikes and 30 dives last summer before my October brain surgery. So last summer we once again began to entertain the possibility of hiking Kilimanjaro if I made it through the surgery ok. My recovery this time around was very rapid allowing me to walk the Seattle half marathon 39 days after an intense brain surgery on 4 tumors. – to this date I have had brain surgery for 6 tumors. Therefore, in November we really started to seriously consider the Kilimanjaro trek. We wanted to grab the chance while I am able as NF2 has no guarantee on quality or ability of life.

That being said, we are very excited about this trip and our purpose. I greatly look forward to getting to know you more and seeing some of you at the top as well as training locally. Thank you again everyone for coming out to support us! Your participation is invaluable!