Tuesday, July 29, 2008

Meeting Goals - This one is for you Skip!

Nice Run In The Rain

I did it! I finally ran a 10 K!
After I came home from surgery late September I set 3 goals for myself to work toward. Harley encouraged me to write them down to make them real and to remind me what I set for myself to accomplish. When goals are written down you become more committed and are more apt to follow through with pursuing them.

My 3 goals were to:

1) learn to write again (my hand and wrist was very weakened from the surgery and I could barely sign my name)

2) climb the Columbia Tower again (the tallest skyscaper in Seattle and the west coast)

3) run a 10 K by July (which I have never done in my life)

As soon as I was approved, I hit the gym and started doing weight lifting again and worked on my arm, wrist, shoulder, and hand muscles. After about 3-4 months the muscles which control handwriting were finally strong again and I was back to enjoying writing lists ans signing my name.

While in the hospital going up or down stairs was very terrifying as I had double vision and my balance was weakened. At the same time that I resumed weight lifting, I also did various exercises to train to climb the Columbia Tower and I used the stair simulating machine at the gym.

I worked up to running two 5 K events in June but was not ready for a 10 K. It was taking all I had just to run a 5 K. When I decided to pursue this 31.5 mile hike, I changed my training and quit running after my 2nd 5K event on June 8th. I was having a hip problem and decided to stop running to see if it improved.

I pretty much decided to forgo the 10 K all together but a couple weeks ago it began nagging at me. It felt like my summer and my goals would be imcomplete.

There are no guarantees with each surgery or even of how my life will progress with NF2. I am not in a position to say "Oh. I will do that next year.....or...the year after, or the year after that." This could be it! It could be my only chance!

I had regretted not taking the time to do a 5 K before my last surgery. I really wanted to know if I could do it and how well I could do. When I had ran in the May 2006 Relay for Life, I collapsed after 3 miles. A year later I was stronger and wanted to know how I would do. Fortunately, I was still able to pursue this after my surgery and pleasingly found my answer this summer.

So the 10 K beckoned me. It was too late to enter any local 1o K races. The last one was on Saturday which was a hard hilly course in downtown Seattle. I had not awakened early enough to make it in time for registration so I did not go.

Tonight was perfect for running and I had it in mind to attempt a long run. It was a nice cool 61 degrees for the dogs and a very ideal climate for me as I do not take well to running in the heat. Further, it was sprinkling that later turned to a shower which kept my eye moist and the dogs and I refreshed. The damp rain bought out the exhilirating smells of the earth pleasing our senses.

At first I really did not have it in mind to run a 10 K but as I was running and enjoying the trail and surroundings, it dawned on me that July is almost over. It is July 29th to be exact with only 2 more days left......my original goal almost faded. With conditions perfect there was no time like the present. If not now, when? I had to grab the opportunity before it slipped out of my fingers. Thus I put my whole heart into the run and determined that I was going to try with all my power to complete a 10 K.

A few weeks ago my dear friend Skip told me very confidentally that he believed it would not be a problem for me. I doubted myself and told him that I had a hard time running just a 5 K. Still, his belief in me did not falter and I began to believe in myself and revisited the original goal I had set.

It was not by any means easy but I tried to put myself in a mindset to complete what I set out to accomplish and to not give up. I thought of how proud my friend Skip would be and I thought of the many others whom I admire working hard to run marathons to raise money for NF and other causes. Fellow patients who would probably love to run at all further came to mind. I also thought about all the people sponsoring me on this hike and how they believe in me too. It is my responsibility to follow through.

During the run I set little distance goals to make it from one point to the next. Since I can't read my watch or pedometer to run, I had no idea the exact distance I was going. I just knew that the particular route I ran last week was almost 6 miles. Therefore, I ran further to ensure that the distance was long enough.

If you had been a runner behind me, you would have wondered if I was drunk, severely exhausted, or something was seriously wrong with me as I did not run a straight path. I was zigzagging all over the place and several times I nearly lost my footing and tripped. Barely being able to see as darkness approached I just kept on going. Not only was I setting out to complete a certain distance, but I was also racing against the clock to get out of the tree covered areas while there was still a little light. Once the night has settled, my chariot turns back into a pumpkin. Thus I kept running until I could break out into the field where the faintest bit of daylight remained. It was a good extra motivation...the little push that I needed to reach my goal.

Training Question #1

"Do you have balance to run? or do you just walk? and how long did it take you guys to hike the 12 miles? "

The questions above were asked by another NF2 patient who is going to walk her first half marathon at Disney World in January. Very few of us with NF2 are able to pursue athletic fundraising events due to the damage to our balance system from the tumors, radiosurgery, or microsurgery. The reason is because the primary tumors that all NF2 patients eventually develop are intwined with the 8th cranial nerve (acoustic nerve). Before branching out and reaching the brain stem, the 8th cranial nerve splits off into the facial nerve and vestibular nerve. Along with hearing loss as one of the main symptoms, very often the vestibular system which controls balance is also affected because the tumor either encroaches the vestibular nerve or the nerve is aggravated or damaged through radiosurgery or surgery.

I had lost a very significant amount of balance to the degree which I would fall over if I shut my eyes, could not squat down without rolling over backwards, and at one time I had to use a hiking stick to walk and could not run. Through hard work over the past 3 and 1/2 years, I have been able to restore a great amount of balance function. Although for me I experienced a drastic loss of balance, I was still lucky as I did not have depend on a walker nor was I ever confined to using a wheelchair. Limitations on mobility are a reality for many people living with NF2.

Below is my response to the questions directed to me:

"Yes. I have balance to run. I didn't before and started running with a hiking pole. Then I eventually was able to run without one and walk without a hiking pole. I only use hiking poles now when I am hiking on a semi rugged trail with an elevation gain.

The longest I have been able to run this year is 1 hour and then I ran almost 6 miles on Monday night. The trail that I will be hiking on is a very wide crushed gravel path which is an old railroad grade. Before my imbalance I would not had classified this as a hike but as a walk. I would not finish in a day if I were doing what I used to consider as a hike.

The goal is a 3 mile an hour pace. We were able to achieve that last sunday even though my husband had an ankle problem. We only walked 6 miles on the trail because of it and went to buy him new shoes.

It took us longer to walk the 12 miles because we had the dogs with us that need water breaks every hour. At the half way point we hung out at the lake for a short while so the dogs could wade in the water. I think it we had about a 2.5 per hour pace and I told him we need to pick up the pace in order to finish while daylight (11 hours)."

Note: I did not use a cane because I was too proud and did not want to buy one. I was concerned I would be metaphorically using it as a crutch and that I would not be motivated to improve my balance. For my birthday in fall of 2003, before I lost my balance function, my husband had purchased me a hiking stick which a camera could be mounted on (I loved to hike and take pictures previously). When I became balance challenged, I was stubborn (and mad) and did not want a lesser quality of life which imbalance inflicted upon me. Therefore, I only used the hiking stick for stability and situations when I absolutely needed it. Other times I would challenge myself to get back what I had lost.

Also, in another communication with this person, I explained how I returned to weight lifting 3 times a week starting in Feb 2007 which made a drastic improvement in my balance ability. In addition, I have also been doing water aerobics and practice standing for at least 3 minutes and do 5-10 squats on the balance device called BOSU (both side up).

Core Values

"Something magic happens when we accept personal responsibility for our behavior and our results."
- Mac Anderson of Simple Truths
An excerpt from the book Change is Good...You Go First!
By Mac Anderson and Tom Feltenstein
According to Gallagher and Ventura, the most important words of personal responsibility are as follows:

The 10 most important words: I won't wait for others to take the first step.
The 9 most important words: If it is to be, it's up to me.
The 8 most important words: If not me, who? If not now, when?
The 7 most important words: Let me take a shot at it.
The 6 most important words: I will not pass the buck.
The 5 most important words: You can count on me.
The 4 most important words: It IS my job!
The 3 most important words: Just do it!
The 2 most important words: I will.
The most important word: Me

To read more click here: http://www.simpletruths.com/nws/arc/08/080729-CHGO.htm

Thursday, July 24, 2008

Commitment - Walk The Talk

An exerpt from Mac Anderson's new book "Walk the Talk":

Abraham Lincoln had this to say about commitment:

"COMMITMENT is what transforms a promise into reality. It is the words that speak boldly of your intentions. And the actions which speak louder than the words.

It is making the time when there is none. Coming through time after time after time, year after year after year. Commitment is the stuff character is made of; the power to change the face of things. It is the daily triumph of integrity over skepticism."

Commitment can be a tough challenge at times (especially during moments of discouragement). Perhaps that is the test. Can you truely hang in there? Do you really stand for what you believe? Have you whole heartedly really given of yourself and fulfilled your full potential? Do you walk the talk?

When I reflect on the meaning of commitment a quote by Eleanor Roosevelt comes to my mind:
"You must do the thing which you think you cannot do."

Monday, July 21, 2008

Holy Knots!

Since I began losing my balance in 2004, I have not done alot of hikes which are steep and gain in signifcant altitude. I really rather prefer to be out on a mountain trail than walking on a side walk or pavement in a neighborhood or bike path even though it is much more difficult for me and slows me down. In a way, I kind of enjoy the challenge...using my hiking poles and conquering a trail which at one time became impossible for me. There are points which can be frustrating (like when I am working hard to tackle the trail and all of a sudden a few people easily saunter by who are obviously not regular hikers). It is at times like that which I realize how easy the trail really is and would have been no problem for me prior to my imbalance. As a matter of fact some of these trails were too easy or the elevation gain too small that I opted for more extravagant hikes.

Even though hiking on such trails for me causes moments of frustration and I really have to work it, I do so badly want to go and long to be in the mountains every nice day that passes by and I witness their majestic glory. I pleaded with my sister to go out hiking with me Saturday. I cannot go alone as sometimes I need help and also because it is not safe anymore for me to go out on one of these hikes alone.

It ended up that my sister had plans for the early afternoon but being the good sister she is, she agreed to go hiking with me early in the morning. It also meant hiking on the trail we selected at a fast pace so she would be home in time to get ready to go to the Mariner Game.

Now hiking on a flat easy trail I can go fast and far without having any soreness the next day. I believe we hiked 6 to 7 1/2 miles on a partially steep trail in the Issaquah Alps known as cougar mountain. Trying to hike up and down a steep grade really is a workout on your calves. At the time I did not think it was going to have any or much of an effect. After the hike I actually went to the gym and rode for 2.5 more miles on this sort of running, skiing, stairstepping type of machine.

Yesterday when we went for our walk my calves were slightly sore and then this morning they feel as if someone used my lower legs as punching bags. Ouch! The pain of the tight knots sharply jabbed my calf muscles each step I took down the stairs and headed back up!

I rested them throughout the day by not going to the gym or taking a walk. They were still sore but I chose to go for a run this evening which felt fantastic as I was able to stretch out the sore muscles. I am not exactly certain the exact time it took me (just under an hour) but I had a phenomenal run and was just shy of 6 miles when I stopped! It was perfect running weather just before dusk (a cool 67 degrees which made breathing easy and kept me from overheating which makes me tired).

I wanted to just keep going so I did. A part of my motivation was thinking my friend Skip who I recently told I would like to be able to run a 10K. He has all confidence in me and told me that he believed I could do it. I have had my doubts. Running for me is hard work and many times I have to push myself just to make a 5K.

I was also pondering about things such as the surgery coming up and the fundraising I am trying to do to raise research money to stop these awful brain and spine moles from taking away more of our quality of life. It is a complex mix of emotions to feel that can leave me in periodic episodes of anxiety. People not understanding what I am trying to do can get me quite discouraged at times. You really have to be tough all around with this NF2 as it really dishes it out to you and is a constant. It never ends until life ends. So in a way, NF2 metaphorically leaves one tied up in tight knots as we fight to someday break free. It can be very anguishing.

Today a fellow person with NF2 who is really facing a tough ordeal which most of you without any serious medical ailments could not even imagine, told me to not be discouraged. Coming from him that brought me comfort and helped me to hang in there. I just hang in there long enough and eventually I would make it.... Just one more bridge to make it to and once there I decided I was strong enough to make it to the next. He told me we are all just doing our best to survive from one point to the next. I kept that in the back of my mind during my run and did not give up. I just kept pushing from one point to the next.

Filling the Bucket - Bucket List that is.

In the past few weeks amidst training and fundraising, I have been taking some time to fulfill some bucket list items.

What is a bucket list you may ask? Well if you do not already know and have not seen the incredibly inspirational and heartwarming movie the "Bucket List" with outstanding actors Morgan Freeman and Jack Nicholson, it is a basically a list of things important to you that you wish to do at some point in your lifetime. It does not mean you are going to "kick the bucket" so to say anytime soon but that you simply realize how short life really is and that it is worth the time to pursue your ambitions before they slip away.

I have had such a list actually for a long time as I am a cancer survivor and got a glimpse at my own mortality at a young age. I never called it a bucket list but just a "list" of things which I have wanted to do while there is still time. Every year I have successfully completed or have done something on this list. There are a few items for either an unknown reason or inability of resources as to why some things I had never done for many years.

Ironically, I have never told Harley about this list but he was aware of some of the things I wanted to do. Because of his attentiveness and loving, it has been a summer doing some of these things we never did.

Kayaking around the University of Washington canal and arboretum along the shoreline of lake Washington where we got up close to great blue herrings and baby ducks and geese.

Watching the 4th of July fireworks in Seattle from a boat. Thanks Luke and Jessica!

Visiting the VanCouver BC aquarium (where we went on our anniversary last Wednesday July 16).

There are a few more bucket list items in the works - one I have waited 10 years or more to do and the other I have been desiring to do since spring 2004 before I lost my balance (scuba dive again).

Thursday, July 03, 2008

Carrying Out Kindness

Although the topic does not have anything to do with NF2 to you, it does to me. Living life with NF2 has really brought me to the true meaning of empathy, provided me with a deeper sense of appreciation, and encouraged me to do my part in making the world a better place.

You should never feel small or insignificant because the simpliest of things can go a long way and can be contagious. I found this article today from Mercola Health (the link is in the post title) which is a perfect example of ideas you can do to contribute to global good and in return, give you an uplift for making someone's day.

Carry Out Random Acts of Kindness Every Day

You cannot just rely on others to make the world a better place -- everyone has to help. Or, like Gandhi once said:
“You must be the change you want to see in the world.”

Kindness is actually contagious, and you might want to consider carrying out random acts of kindness on a daily basis.

It is truly a win/win/win situation. The person you are being kind to benefits through your help. You feel good for having helped someone. And the world is a better place through your kindness.
You could:

Send someone a hand written note of thanks.
Make a card at home and send it to a friend for no reason.
Buy a lottery ticket for a stranger.
Put some coins in someone else’s parking meter.
Cut your neighbor’s hedge.
Walk your friend’s dog.
Give a compliment about your waiter/waitress to his/her manager.
Send someone a small gift anonymously.
Stop and help someone replace their flat tire.
Let someone jump the line at the bank.
Pay for the drinks on the next table at a café.
Treat a friend to the movies for no reason.
Give a huge tip to someone when they least expect it.
Hold the train door open for someone rushing to get in.
Give up your seat for someone, not just an elderly person.
Write notes of appreciation at least once a week.
Talk to a homeless person and have a “normal” conversation.
Pick up some rubbish in the road which would otherwise be lying around.
Compliment a work colleague for their excellence.
Recommend a competitor to a potential client.
Give another driver your parking spot.
Give a piece of fruit to a delivery person.
Help an elderly neighbor carry the rubbish out.
Tell all your family members how much your appreciate them.
Leave a copy of an interesting book on a train/bus.
Buy an inspirational book for a friend.
Send a thank you note to a person who has helped you in the past.
Smile a lot.

Once you get started, you may find it a habit hard to break!
For even more inspiration, and support from other people who are passionate about passing on kindness to others, check out The Random Acts of Kindness Foundation at www.ActsOfKindness.org.