Friday, August 08, 2008

Living Life

Special thanks to Jane Brasiunas of TSNW for being my hiking companion for the day, my sister Michelle and husband Harley for joining me in the paragliding flight, John Clifford of Free Spirit Paragliding for arranging the flights, my pilot John for a fun and safe flight, Harley's pilot Bob Hannah for helping with my takeoff, Michelle's boyfriend DJ and my friend Skip for coming to videotape us, scuba instructor Mary Beth Ackerman for the fun pool refresher, and my captioner Lisa Hutchinson for volunteering to caption my pre-pool session to review my scuba skills with Mary Beth before going into the water.

Sorry for the brief absence but I was busy finding some time to live life....to escape for a moment from the burdens of NF2 and the possibilities that lie ahead. Of course there really isn't any day where I can just say "No NF2 today". There was a time when I could but that is no longer and my imbalance, visual impairments, and deafness are always here to remind me where I stand.

Yet, being able to pursue and conquer certain challenges/activities I have desperately longed for provides me some form of mental relief and high. Like I said, each day which I partook in each of the activities there was not a day that NF2 or how it has affected me was not mentioned. However, while doing each activity I was able to separate from my being...to have the slight feeling of exhilaration which comes with freedom. Perhaps it is another coping mechanism of compartmentalization which I have been naturally doing in regards to my upcoming surgery. I KNOW that a future surgery is eminent but it has not yet resonated with me. I am separate from it. In the back of my mind I have a small hope that something miraculous will happen and come September I will be told "Wow! Great news! You don't need a surgery! We are totally amazed!"

Well, the reality part of me is saying "It is coming. You don't have the luxury of infinite time. Do things now before it is too late."

So what did I do? With the last month of summer here I did many things all in one week! I put aside my training, thinking of fundraising. doing fundraising, and my normal tasks to just live life. For me that means exploring and experiencing adventure.....to have all my mental focus on that one activity. It was nice and for a little while my life felt almost normal again (not having to worry about all these other issues I have been forced to deal with and to just do something I really want or enjoy).

With my balance showing the greatest improvement since 2005, I was just aching to do some of the hikes I used to be able to do. Again, I am never completely free of NF2 as it has provided obstacles to doing what I want to do. The hike Saturday (which I last did in 2005 before I lost all balance) was very difficult even though it is not a very long hike and the elevation gain is not tremendous (5-6 miles; the pedometer said almost 6.5 but the book said 5 with an elevation gain of 1200 or 1500 feet). Yet the terrain was very challenging with roots, large rocks, steep steps, and rock slabs in places. It took me twice as long to hike it than before just because it took so long for me to negotiate each step with the aid of hiking poles.

I was thinking how it was a much more challenging route than I had anticipated and remembered. But boy did I sure feel a the of power of living when I got to the top! I could have almost cried with happiness and satisfaction of my accomplishment and to be able to experience the view once again. For those of you with children, I imagine it is the sensation of pride and joy you felt when your child was born.

Sunday we finally did what I was wanting and waiting to do for over 12 years. Ever since I hiked Tiger Mountain and saw the lovely parachutes gracefully drifting about the sky, I wanted to be up there too. We had planned on it for my 30th birthday but unfortunately the 911 terrorist attack in the same month caused the government to enforce a flight ban on any sort of parachuting activity within a certain distance from Seattle. Therefore, I planned to go on another momentous occasion which was to celebrate my 15th year of remission. That year is now....15 years cancer free!

So Harley, my sister, and I all took flight! We rode a safari type of vehicle to the top which was really nice and much easier than the hikes I had done to the top of Tiger Mountain previously. When we reached the summit with the take off runway, we were wowed by an absolutely fabulous view better than any I had seen when hiking to the top of Tiger Mountain.

Last summer, on our anniversary, was the first time we hiked Tiger Mountain in 4 years or more! Within that time the small trees grew to be tall trees and now obstruct the pretty view which includes Seattle. It was a nice treat to arrive at such a stunning view so easily and then to float around in the air with nothing under your feet to enjoy it!

Before take off I was a little nervous about screwing up or tripping causing us to crash. The pilots were there to help me and there were only a few steps to sort of run and then we were lifted up and away. We started at about 1500 feet but the wind carries the glider up to 1700 feet so we were able to rise above the runway. My sister brought her video camera and taped us taking off and flying by while her boyfriend DJ and my friend Skip recorded my less than graceful landing. ;o)

The next couple days involved studying and getting all my gear together and assembled for the Tuesday night scuba refresher in the pool. It went great and I passed all the skills with the exception of the fin pivot which I could not perform because my tank kept rolling to either side setting me off balance (my buoyancy compensator device bcd, no longer fits me and is HUGE so my heavy steel tank kept shifting around). Other than that everything went fine and it was nice to be under the water again. Mary Beth (the instructor) and I had fun playing underwater catch with a torpedo shaped toy.

The following is my post on the scuba board about my refresher experience:

I have no exciting dive to tell you but it was thrilling for me to be back in the water even if it was a pool after a nearly 4 and 1/2 year abstinence from diving. I took the refresher and all went well except my BCD was huge once I got under the water. It was interesting to experience in the pool what it is like if you do not have equipment that fits right. I had adjusted my black diamond down as much as possible and it did not seem like it would be that big when I was out of the water. However, once I got into the water my steel compact 80 kept shifting from side to side. I could not perform the fin pivot because each time the tank would eventually shift to either side throwing me off balance. I sure did miss the streamlined fit I once had and easy maneuverability.

Now that I am completely deaf, it is interesting clearing my ears as I can no longer hear it and tend to forget until I get a little discomfort. It is hard to determine when they clear because there is no sound or pop. I just know if when it feels ok again. So that will take some getting used to. With the steel tank making me so negative and the shifting BCD, my focus on ear clearing was distracted and it did not resonate with me until I started to feel a little discomfort.

I was concerned what it would be like breathing under the water and not being able to hear it anymore. This occurred when I tried a rebreather years ago and I did not like the experience. However, my brain is wired to hearing the sound of breathing underwater. It seemed natural and my brain followed suit by inputting the sound. Or perhaps it was the feeling of breathing on the regulator and seeing my exhaust bubbles that created the illusion of hearing. It is a strange phenomena but if I see certain things such as a car drive by, I think I can hear it or if I clap my hands or tap my fingers, I think I hear that too because of the vibration signal traveling through my body. In actuality I cannot hear at all. My brain is accustomed to familiar sounds so it often gathers a memory and inputs a sound which it think is appropriate. For example, I grew up rurally and heard birds often. When outdoors on a nice day and in the wilderness I always hear birds whether they are there or not.

I did find it nice having the knowledge of sign language to communicate underwater. It is very exciting and fun to show your buddy signs more specific then the standard dive signals to say how you feel, what you want them to see, or what you are thinking about. It is very fun! As a matter of fact ,I think it is the most fun I have ever had with sign language.

1 comment:

Anonymous said...

I laugh and I cry at your beautiful blog, so eloquent about your feelings on the hike that I went on with you...and so expressive to help us have some small understanding of what the life is like for those of you living with neurofibromitosis. My laugh: the irony of the paraglide/chute ban after Sept 11!

And what an interesting description of "hearing underwater."