Water - The Essential Ingredient of Life

Click the following link to see how to sign water:

http://www.signingsavvy.com/sign/water
Note - It is not exactly clear in the annimation so I will tell you exactly how to sign "water". Form the letter W on your dominant hand. Your pinky and thumb should touch each other while your remaining 3 fingers point up resembling the letter W. Keeping your hand in that formation, bring your hand toward your lips with your pointer finger gently tapping the middle of your mouth.

Water is a priviledged luxury that we take for granted in developed countries, most especially in areas where water is abundant. In third world countries such as Africa, Mexico, and Central America, bottled water MUST be used for everything which comes in contact with your mouth including brushing your teeth. (I have a horrible story about when I forgot to close my mouth while showering in Mexico and became FRIGHTENING ill).

Everyday we went through a few big bottles of water as you see here (that is Harley at the breakfast table of the Dik Dik hotel). Kilimanjaro is the main bottling distributor in all of Tanzania - or at least the areas of the country we visited.

On Kilimanjaro, they add purification tablets to the water and we are instructed to bring powdered drink mix to make it taste better. Every night the porters collected everyones bottles and hydration pack to fill for the day ahead. For this reason, everyone has their name marked in permanent ink to avoid a mixup. From what I remember, breakfast drinks on the mountain were juice, coffee, or a special vasoconstricting tea which they also served at short breaks during the hike.

The other 2 photos are from our venture in the Cascade Mountains of the Pacific NW where water is in endless supply and yearly there is even a period of flooding in the valleys.

Winter "fun" - first snowshoe outing of the year!

Yesterday was another absolutely gorgeous day in the mountains! I got Harley snowshoes for Christmas so we took the opportunity to try them out at Gold Creek snopark in the Cascades. Snowshoeing with the dogs is always a "fun" pastime we enjoy.

The sign for the day is "fun".

Click the following link to see how it is signed.

http://www.signingsavvy.com/sign/fun

Mountain and Sunday - signs for January 2nd

I chose to end 2010 and begin 2011 by savoring one of my ultimate loves that brings me great joy - the mountains! Thursday was an absolutely gorgeous day where one of my hiking friends and I were able to escape into the winter wonderland of the PNW for some cross country skiing. Sunday I had the special treat of being with all the pleasures which bring me great joy all at once!....the dogs, the mountains, and snowshoeing with Harley.

The signs of the day are

"mountain": http://www.signingsavvy.com/sign/MOUNTAIN/1874/1

"Sunday": http://www.signingsavvy.com/sign/sunday

Friends - New Year's Day sign

Happy New Year! To sign the phrase "Happy New Year" combine the signs for "Merry", "New" and "Year" shown in the previous posts. For the New Year's day sign the relevant topic is friends.

Click on the following link to view how to sign "friend/friends".

http://www.signingsavvy.com/sign/friends

We rang in 2010 with some long time good friends - Pat who was our first friend we made in Seattle when we moved to Seattle in 1996 (he and Harley were coworkers at his first job), his wife Sorcha, and our deaf friends Karen and Sam (in the one photo of the couple).

It is an interesting story how we became friends with Karen and Sam. It is a strange kind of fate/coincidence thing. First of all, Karen and Sam were on complete opposite coasts of the country when they started dating. Years before Karen became one of my first ASL teachers she came to my house in Seatac when I just began to loose hearing. She was representing the state delivering a piece of hearing technology to me. We did not even remember at first when we met again years down the road. As we began to get to know each other better, we later remembered our initial meeting. I did not know ANY sign whatsoever and was puzzled that the state sent me a Deaf person whom could not speak to me (I was still VERY much hearing dependent). As a matter of fact, I think our encounter is the first time I communicated one on one with someone in writing on paper. It was an interesting opportunity and Karen was (and still IS) VERY PATIENT. Completely tramatized about losing my hearing and the possibility of going deaf, meeting her as the first deaf person who did not speak was a very positive experience for me.

After finishing graduate school in spring of 2004 and with BARELY any hearing left, I finally had some time freed up to learn sign language again (I had taken 1 class in fall 2001 but continuing the classes did not work into my schedule until years later). Harley and I signed up for a beginning sign language class to take together with some friends and one of my captioners at the local Hearing Loss/Deafness Center in Seattle. Karen happened to be the teacher and what a GREAT teacher to start out for Harley and our friends. Having a compassionate teacher was also a good a refresher for me to ease back into it at such a sensitive time (almost deaf and anxiety about pursuing treatment due to rapid and massive growth of one of the brain tumors).

Now how does Sam come into the picture? At the time I reconnected with Karen she was seeing someone long distance that she met online. Wouldn't you believe that Sam also had a VERY similiar brain tumor to the ones I have? Many years before they met, he had surgery to remove a tumor on one side of his brain that was over 4 cm in size! Hearing loss was a symptom but the doctors did not believe him and sent him to see a psychologist instead!!!! Finally the tumor became so large that it began to cause more serious and life altering side effects that prompted more thorough investigation. By that time the tumor was HUGE and the immediate surgery which followed left Sam with permanent damage to many functions (eyes, balance, face, memory).

Although Sam's tumor and ONE of the main tumor types I have share the same common name Acoustic Neuroma, generally speaking the tumors are different. Mine are more specifically referred to as vestibular schwannomas and tend to be more wrapped around the hearing nerve, more difficult to respond to radiation treatment, more difficult to remove, and often regrow after surgery. They also grow on BOTH auditory nerves which means on each side of the brain affecting both ears. For Sam's tumor type, only 1 tumor grows on one auditory nerve and as such is not "bilateral" which is the halmark of NF2. Typically people with one acoustic neuroma do not experience as severe of side effects as Sam has which is very common for those with NF2. However, Sam's tumor was neglected until it got out of hand. His deafness in both ears happened to be unfortunate luck of the side effect from medicine he had to take because he broke his ankle due to losing balance function after surgery.

Sam moved to Seattle from Washington DC and they married in August 2004. Since then, Sam has ungone many surgeries to open his eye and correct his eye positioning (for 30 years he lived with one eyelid closed as a complication resulting from brain surgery) as well as facial nerve graft surgeries and a cochlear implant. Sam and I share the common bond of dealing with late onset deafness which has its own unique challenges and living with the side effects of a brain tumor. So as you can see, a peculiar twist of destiny has drawn us together.

New Year's Eve sign - "Year Ago or Last Year"

It was a quiet new year's eve. We elected to stay home this year to enjoy the comfort of the cabin on a cold winter day (we have snow this year).

A) to avoid traffic in Seattle
B) we had no reservations which would mean either very costly options or everything booked
C) to start the new year relaxed and ready to begin on a refreshed note (Harley spent a rare day off at home reading his new health and fitness book gearing up for this year's gym challenge, and I a good stairclimb workout at the gym to get ready for the Big Climb and 2 wonderful walks with the dogs at the park to nurture my mind and spirit (half hour before sunset and another by starlight and headlamp).

Hence, I chose to share with you photos from New Year's Eve 2009 moments before the start of 2010 when we celebrated at Salty's restaurant in Seattle. Looking back in the archives for 2010/2009, I see that I never posted the photos from last year;s new year's eve! That goes to show how my memory was trying to repair so shortly after surgery. So here you go! ;-)

The sign for the day is "Last Year" which is also the same for "Year Ago".

Click on the following link to see the sign for "Year Ago":

http://www.signingsavvy.com/sign/YEAR/1677/1

Year - sign for thursday 12-30-10

A little overdue with the sign of the day

I spontaneously went into the mountains with a cancer survivor friend to try cross country skiing. It proved rather enlightening for me after 14 years since last and after losing all my balance to brain tumors. That will have to be another post.

Here is the sign for "year": http://www.signingsavvy.com/sign/YEAR/732/1
(click on the link)

The photos included are some of the highlights of 2010 for us.

photo 1 - Harley and I celebrated our 10 year wedding anniversary. The photo of us was taken at the roof top of an exclusive club at Ceasar's Palace in vegas where the Gold's Gymj convention members were invited to a private party.

photo 2 - pictured with the other Gold's Gym international finalists for most inspirational member of 2010, Jennifer Heideman from Ontario Canada on the left (also a competition body builder) and on the right Danielle Camp from Grand Junction Colorado

photo 3 - Harley and I fulfill a 10 year dream of hiking on Kilimanjaro in Africa together to bring awareness attention to NF2 (and bonus we had a movie made of it to be submitted to the Sundance Film Festival! Who knew that either of us would be involved with something like that when we were born??????)

New - Wednesday's sign

Click the following link to see how to sign "new".

http://www.signingsavvy.com/sign/new



My sister bought me a running skirt with matching sports bra. As the story goes, we were running in the Seattle Rock and Roll marathon last June and spotted a lady wearing this skirt. I totally LOVE running skorts and have been on the lookout for them over the past year.

While in Africa, my mom and sister surprised us with their own "while you were out" episode by painting our bedroom. We were still using a queen size comforter for our king size bed! hehe So my mom got us a new comforter of the appropriate size!



my sister with her new pjs

Christmas - sign for 12-28-10

Click the following link to see the annimated sign for Christmas.

http://www.signingsavvy.com/sign/CHRISTMAS/782/1
Now put the 2 signs together to sign "Merry Christmas"! :)

Yesterday's Quote of the Day

"Be the silver lining in another's cloud."

I found this on the wrapper of a piece of Dove chocolate yesterday and found it to be a good one to share. I like it! Personally I see it as a good reason for living.

This goes back to the "why" of doing things which motivates you when you understand the reasoning behind the choices you make. For an EXCELLENT discussion of this topic
watch SUCCESS magazine author Darren Hardy's video blog series about "Living Your Best Year Ever."

Igniting Your Indomitable Inner Power by Darren Hardy

http://darrenhardy.success.com/2010/12/inner-power/

"Merry" - sign of the day

So for those reading for the first time or have been out of touch with me and my life over the past 6 years, I am now completely deafened. That means aside from being able to feel vibration, I would have no idea if someone set a bomb off behind me. I have no hearing whatsoever.

While many of you will lament, think that is the worst fate in the world, and pity me I will tell you to NOT! It has been a challenge and there are times of frustration, yet I have learned to be confident with who I am and adapt to a change that has ironically probably made me for the better.

I have definitely learned patience, how to be a better communicator, how to enjoy the visual in the world which is totally surreal to me at times and fascinating (whereas I think a greater percentage of hearing people completely and saddly miss these wonders), to explore imagination more, and to problem solve how to be more productive or utilize my time for my enjoyment/benefit when people are engrossed in chatting away which often is not that important anyhow (perhaps a joke or some blather about weather, the score of a game, or maybe even complaining). My advantage of deafness is being able to filter these things out and concentrate my energy on more important things.

Anyhow, to enhance communication between people (most especially loved ones and those involved in a close relationship with me), it behooves us to use every tool available for communication. While I do not REQUIRE people to learn sign language, those who do make the effort forge a deeper bond with me. Just as I do my best to understand the needs of the hearing - joy of music and dance, need for conversation, sound, adapting to MANY different handwriting styles to read those that prefer to write, and YES bending to try to lip read some and be patient - people who make an effort to sign are in tune with meeting me in the middle on an even playing field. In other words, they care about the relationship enough to also empathize and step out of their role as a hearing person as I have had no choice in the matter. To me that speaks volumes!

No, people do not have to be perfect or fluent. I am not even fluent after signing for over 6 years. I use a form of sign language known as PIDGIN - ASL signs in English grammar format. With my visual impairment, sign also needs to be slow, large, and sometimes repeated for me to fully see the sign intent.

I GREATLY appreciate the effort as it certainly comes in handy for situations where writing does not work out or is not practical (such as outdoors in the NW rain which is quite common, on a walk some place to get exercise where it is irritating to keep stopping to write and read, and situations like eatting when I want to sign to sign someone because my mouth is full. It sure is nice when someone can understand me because I do not have the best handwriting anymore.

Understandably, it can be a challenge to find the time to take a sign language class and to coordinate getting together to practice or learn sign. Therefore, Harley came up with an idea this weekend where I can meet people's needs near or far at the same time and also leave the table open for those who may be interested that I do not even know. So I am going to try it out in the new year.

He thought of me posting a sign of the day which I can also email to those interested in learning/receiving it. That way people who do not have a whole lot of time are not overwhelmed but learning a little bit at a time. I'll try out the sign of the day to see how it works and maybe drop down to sign of the week or every few days.

To get the party started I am going to begin with the sign "Merry" which has relevance to this time of year with BOTH Holidays as the sign "Merry" and "Happy" mean the same thing in sign language. Hence the sign is the same for both words. Tomorrow I will show you "Christmas" so you know how to sign "Merry Christmas" and you also have a head start on "Happy New Year".

http://www.signingsavvy.com/sign/MERRY/3887/1
Click the above link to play the annimation for the sign "Merry".

hehe I have posted a photo of my trainer/kili teammate Merrie here as her name sounds the same as "Merry". Thought you would like that girlfriend! ;-)

By the way, Merrie does have a name sign and no it is not the same as "Merry". So I guess I am giving you 2 signs for today. Her name is the sign for M moving over the biceps muscle to signify Merrie is a personal trainer at the gym.

Merry Christmas!!! (2010)

The holidays have proved really busy! We hope you enjoy our Christmas card of the year along with a couple holiday photos.

I am very happy to report that our Christmas wish and prayer came true! We have reached our fundraising goal of the year for the Kilimanjaro NF awareness project. The trailer is truely spectacular and I will share it with you once we have final approval. Now we will be moving on to having the film put together so it can be submitted in time for the 2011 Sundance Film festival. Yay! How exciting, eh?!

This is truely a remarkable gift and stunning surprise that I could not have anticipated going into surgery last year. What an amazing development very quickly in a very short span of time!

We are so incredibly grateful to all of you who have supported us via donations, sponsorship, participation, encouragement, enthusiasm, ideas, inspiration, motivation, committment, dedication, faith, celebration, and most of all PRAYERS! Without the culmination of these attributes and coming together, this just could not have been made possible. I will forever be indebted to you for helping me initiate a major mission in life and carrying out the vision I have kept near my heart for many years!

As a successful and gratifying year of accomplishment comes to a close, I thank you for being a part of it which has provided me a meaningful purpose for living and continuing on. I GREATLY look forward to the possibilities and future developments/wonders of the year ahead. Thank you for joining me on this marvelous journey which God has chosen me for!

A Warm African Welcome

The hotel was marvelously decorated with African culture decor and wildlife. In the bathroom were these lovely light sconces of beautiful African ladies.

Packs-N-Roses :D

After a long ride to the Dik Dik Hotel, everyone offloaded their packs near the fountain decorated with a wonderful variety of African birds. Note the little rose bouquets we were greeted with at the airport. In our rooms were vases to keep our flowers in.



A gorgeously decorated table setting with little lady bugs made of clay and real ferns awaited weary travelers where our dinner served to us.

Arriving in a Foreign Land

The first picture of Kili teammate Eric at the Kilimanjaro Airport


Chris and Shane at the Kilimanjaro airport looking as fantastic as always with camerman Ron looking on amongst the crowd


everyone looking pretty exhausted and ready to finally arrive the hotel for food, shower and sleep (Shane, Pedro, Merrie, and Jason)


After over a day of travel on 2 long international flights, we finally arrived the small Kilimajaro airport in Africa. Now think of US airports being huge, having several gates, many restaurants, clean with nice seats at each gate to sit in while waiting, often a fancy and tasteful decor, and a very structured/orderly customs processing area. This is definitely what this small airport is NOT.

When we arrived it was hot and non airconditioned. Notice the simple but old fan adhered to the ceiling above Eric's head with flourescent bulbs without covers. Next you will notice it that it does not appear people are really in an organized line. As a matter of fact there was really no organization to getting through customs and just a harry mob of tired sweaty travelers pushing and shoving their way to one small window where african men seemed to picking out people as if bouncers at a club. The airport definitely had no decor
as you can see from the photos except for a few advertisement banners. Other than that, things were VERY simple and not particularly a place of a clean or sterile environment. At least there were toilets in the bathrooms as opposed to holes in the ground which we would encounter in many places later.

Being deaf, it was critical for me to not loose my group in this crowd and to stick like glue next to Harley who would communicate for me and sign. I had a rolling carry-on bag with me as well as carrying a second bag on over my shoulder to manage within the mass of people persistent upon getting to the front all while I had to tackle with imbalance. A very rude group of international travelers with maroon passports seemed to have no patience or regard for anyone else and kept attempting to cut in front of people or would not give me any space and push from behind. I finally became fed up with one man who kept trying to get in between Harley and I so that I would become lost within the sea of people. Finally I spoke up and told the man that I was deaf so I NEEDED to stay with my group to not get lost. I further indicated that my husband was in front of me and had to communicate for me. Then the guy sort of backed off. Geez louise! Where were these people from? Whatever country, that is certainly not the place for me to be!

We stuck next to our guide Tim who handled things for us (appeared to be bribing and we each had to pay the men). Within the crowd we seperated from Merrie and Pedro and waited for them in the baggage claim. For some reason, the men in charge of granting people through customs were skeptical of Pedro's passport. They had some issue before they let them through.

All together once again, we met some more african men who guided as through the darkness to our van type vehicle where they efficiently tossed our bags up through a window to another man catching them to stack in the back. We were greeted with a glass of champagne and a little bouquet of 3 red roses. More what looked like negotiating was going on through Tim with Harley was over there too. Meanwhile, another african man who did some luggage loading tried talking to me. I think he wanted money but there was absolutely no way for me to understand him (especially in the dark! LOL). We stood there and he kept smiling at me. I told him I was deaf and could not hear him so he needed to communicate to my husband. Oddly, he then kissed me on the cheek, smiled again, and stood there waiting. Apparently but unknown to me at the time, he did not speak my language so he had no idea what I was saying either. He was expecting a tip from ME so he was doing everything he could think of to appeal to me for money of which I had none.

After all the luggage was loaded up and tipping taken care of, we piled into the vehicle with our luggage crammed to the ceiling behind us. The ride was then another 45 minutes before we arrived the hotel. As I looked out into the blackness of the night, I wondered if there were any lions or tigers out there wandering aside the road. My daydreaming was interupted from the lights of an approaching vehicle. At first I slightly panicked that our driver was going to collide head on with with the oncoming car because he was driving on the wrong side of the road! Then it passed us in the opposite lane and it really dawned to me that we were now in a foreign land much unlike our own.

Happy December!

Sorry for the brief interuptions in posting. A short period of the internet being down, the holidays with family visiting, the marathon event, and priorities of other tasks have taken precidence over time to blog. But hopefully now I can regularly update you and get back to the Kilimanjaro trip. I will pepper in a few things which have taken place back at home too. The first of which being our first snow of the season which hit us right before Thanksgiving and is now all melted. We had it just long enough for the holiday and then it melted in time to clear the streets for a safe half marathon run in Seattle for 3 of us from the Kili team on the 28th.

Merrie (my trainer at Gold's gym), her husband Pedro, and I all ran in support of the Help Stop NF2 foundation and to continue our fundraising campaign for the NF awareness movie project which will feature our Kilimanjaro expedition.

Here is my latest message about the status of the Kilimanjaro project and an update on how we did last weekend:

Help Stop NF2 Greetings

Tis the Season to Spread Hope

We all did it! - 13.1 miles in about 2 hours! We have been going nonstop for this cause to bring hope and inspire the world.

Last year after surgery I walked the Seattle half marathon and this year I ran it! It was not an easy run though. As soon as I crossed the finish line medics escorted me to their tent to take my vitals. I felt dizzy but apparently it appeared that I was near collapse. I am willing to go through such lengths however if it means convincing another patient to not give up, motivating others to seek their dreams and discover joy in their lives, and eventually improving the life of a child one day through a cure for NF.
I will struggle to climb a mountain and run miles through a grueling course or harsh weather.

This is what that I aim to accomplish within my lifetime and I need your help to get it started.


Our first phase in the Help Stop NF2's awareness campaign is a movie documentary which includes our climb of Kilimanjaro. Not only am I sharing my life story to familiarize people with Neurofibromastosis, but I have set out to share joy and perseverance with ANYONE who needs or craves it.

That said, I am still in need of $3,405 to achieve this phase of our mission.
Could you please lend a helping hand of $10 or more to inspire the world?

Donate online at www.killatumor.org
Or
Mail a check to

Help Stop NF2
8201 164th Ave NE Suite 200
Redmond, WA 98052

May you all remember the importance of the season this month and strive maintain a healthy balance!

Blessings for happiness as you prepare for the holidays!

Rebecca Dufek
Help Stop NF2
Endurance Charity NF Athlete
Gold's Gym International Most Inspirational Finalist
Brain and Spinal Tumor Survivor of NF2
Hodgkin's Lymphoma Cancer Survivor


SPECIAL THANKS TO GOLD'S GYM NW FOR SUPPORTING ME WITH MY TRAINING, HOSTING A CLASSY KILIMANJARO SEND OFF PARTY, AND SPONSORING US IN THIS EVENT. YOUR ENCOURAGEMENT HAS ELEVATED US TOWARDS NEW HEIGHTS!

THANK YOU TO ALL WHO HAVE CONTRIBUTED TO THIS ENORMOUS PROJECT UNDERTAKING. WE ARE VERY GRATEFUL FOR YOUR CARE AND INTEREST.

Last Vestiges of Fall

the last of the fall colors in front of Redmond City Hall and the police station next to the Sammamish River trail where I train





Happy belated Thanksgiving!

We are very grateful for life and the incredible blessings we have savored over the last year of a spectacular recovery following a second major brain surgery. (Incidentally I have experienced 4 life threatening trials in my adult life: cancer/chemotherapy treatment, radiosurgery for an aggressively growing brain tumor, brain surgery on 2 tumors crushing my brain stem, and 2 years later brain surgery for 4 more tumors compressing my brainstem).

To show our appreciation for life and the gift of good health, 3 of us from the Kilimanjaro team immediately jumped into training to run the Seattle half marathon this month. For me it was tough and painful but is nothing compared to what people with Neurofibromatosis and cancer go through. Many with NF2 and NF1 cannot even run. So why not utlize the gift God have given me to help those in need? Engaging in sports to inspire is the purpose I believe I was meant for.

This was a challenge to get ready as I only had 5 weeks to train following our return from Africa. The weekend before thanksgiving I went on my final long training run of 8 miles before the half marathon event which was today. I was very fortunate to enjoy a good run on such a fine day and capture the very last of fall color we were hit with snow the next day.

Getting Closer

The sunset gone meant we were almost there and would be landing at the airport shortly where we would wait among a sardine packed mass of sweaty tired international travelers through a bizarre customs approval window.

Flying Over Africa

After over a day of flying and crossing major time zone changes, we are finally approaching our destination - Kilimanjaro Airport. As we were flying over Africa, we were welcomed by a lovely sunset.

By the way, flying over the desert looked pretty cool but I don't know why I did not get a picture of it. I was second from the window seat and I think I recall that there was too much sun coming in the window.