Saturday, May 31, 2008

Blessings In Positive Thought - author unknown

A friend of mine shared this with me today and I found it so uplifting that I thought I would post it on the blog to share with all of you. Enjoy and keep your spirits up no matter what the weather!

Thanks Marlen!

"Your idealism may drive you today. A dream that lodges itself in your mind can lead you to visualize a brighter, more positive future than you previously thought possible. You can make the most of your optimistic outlook by using it to help you recognize the paths that will lead to the fulfillment of your goals. This can be a wonderful time to draft a list of the elements that form your perfect future. You may be surprised as you do so to discover that your commitment to your aspirations is renewed and that you feel more enthusiastic about addressing your everyday obligations. A new world of possibilities may make itself plain to you today, showing you the myriad ways you can create the life you want. Looking optimistically toward your future can help you visualize what you want and thus manifest it into being. Our thoughts are the foundation upon which our actions are formed and the mechanism by which we draw blessings into our lives. Affirmative thoughts attract opportunity and can motivate you to pursue your dreams with an enthusiasm that propels you forward. Your optimistic attitude will make even the grandest dreams seem attainable. You’ll be able to use the beauty and success you envision in your mind as a blueprint from which you create your own reality. Few distractions can come between you and your goals when your focus is fixed on the positive. When your outlook regarding the future is optimistic today, you won’t have any difficulties making the future you desire a reality."

Wow! Dilemma

Life really changes when you lose your hearing and find yourself in a world which prior you had no awareness of existing. Of course you and I have all known there are deaf and hard of hearing people in the world but have you ever seriously contemplated how complex life becomes?

It would be if you lived your whole life as a normal sized person and all of a sudden you became a little person (dwarf). Really now, do you and I think when quickly washing our hands in the public restroom how daunting and frustrating it is for a person who can't reach the faucet because the sink is too big and high? Have you really ever thought about that? Or having to find clothes to buy which fit your unique and specialized frame?

Being in a deaf world can be this way. How does one wake if completely deaf? Have you ever wondered? For people with cochlear implants and hearing aides who have severe and profound hearing loss, once the devices come off there no longer is sound. For those who wear glasses, do you wear your glasses to bed at night? Not likely and neither do people who use these assistive devices.

For as long as I could I used an audible alarm clock. As my hearing dwindled to the point I could barely hear, I had to invest in a screaming loud alarm clock called the "sonic boom" and it sure made a boom! hehe Another feature of this clock is that it included 2 other options (a plug in saucer shaped device that fits under the pillow and vibrates wildly and an outlet to plug in a lamp which causes it to flash on and off when the alarms goes off). So the device had growth to be used from when I was hard of hearing to completely deaf. (I have not been able to hear the loud alarm for 4 years as I hear nothing).

There are very few places to purchase these clocks just as they are very few places that sell clothing and products to accommodate little people. Therefore, one often has to travel to a specialty store which may be far away from their home and the products don't come cheap.

Unfortunately, my clock got knocked off the dresser one morning when I was reaching to shut it off. As a result, one of the knobs broke off and exposed the electronics inside. I made do with this for quite awhile as it still worked but sooner or later it began to give off a burning smell and became a fire hazard.

No problem you may think ....just jump in the car, drive to Target or Fred Meyer to buy a new one. If only it were that simple. Sigh. Like I said, there are very limited places that sell these type of clocks (basically one store in Seattle, Renton, Tacoma, and Bellingham which are all a long drive from my home; Seattle is the closest.). In addition, these stores are not open regular hours like other stores. I was sure I could just drive down there today and buy one only to find out that the store is closed on weekends. Further, on weekdays it is only open from 10 am until 2 pm.

Now I have to admit, I have had some time to purchase one before now. However, the clocks are not cheap and with the price of gas continually rising to astronomical proportions ($4.25 a gallon today at the station near our house and $4.09 at Safeway in another city), there is always something else the money needs to be spent on. Thus, I have put off buying one and have used Harley as my alarm clock. It has worked up until now. This weekend he is out of town for a friend's bachelor party. I have an event (fun run for NF) that starts at 9 am and I need to be there by 8:30 am.

"Whatever will I do?", I thought. I did not think it would be a problem because I thought I could drive to Seattle and buy a new clock today. I did not find out until last night that Harley was going to be out of town and I would need one.

With nowhere to buy one and nobody to wake me up, I emailed 3 friends with hearing loss in my desperate plea to borrow theirs for the night. Two of my friends did not have one. They either can get by hearing something or depend on their spouse to wake them. Fortunately ,my friend Skip who wears a cochlear implant had a clock he could let me borrow. So I drove to the next town to meet him and get the clock.

While looking at various clocks and prices, I commented to Skip how expensive they were and that I could not believe that a store did not exist on the eastside where we live where we could buy one (Seattle is about 25 miles away and on the other side of Lake Washington - about a 45 minute drive). He remarked that we are a minority. Then the reality of that statement dawned on me. It is a strange world to live as the majority and then one day become a minority. As I mentioned earlier, it would be like you were a big person and shrunk one day to become little or if your white skin turned black. Imagine that.

Friday, May 30, 2008

Motivation - Never Give Up!

Henry Ford and Ryan Pearce's quotes in my own words:

"If you think you can, you will! If you think you can't, you won't"

Living with NF this theme is constant. So many times for so many things it is tempting to just give up because you are so tired out or feel insignificant. It is a constant mental game and battle to keep oneself going and to endure through all the frustrations to persevere.

Recently I met a fellow cancer survivor who endured a stem cell transplant as she had a rare cancer of the bone marrow. Having had been a cancer patient also and going through the trauma of possibly losing hair, having it thin, then having to get it cut off, cancer side effects, the rollercoaster ride of steroids, and similarities we have endured (she with her cancer and now I with my battle with NF2), we had lots in common and stories to share. She had a remarkable attitude.

While every cancer patient endures their own challenges, I saw her battle with cancer as more difficult to fight then what I had with my own. Yet, she has a great outlook and despite many hardships she is vibrant and a cheerful person to be around. She wrote to me that she REFUSES to give in to the cancer. I thought that was great! NF2 is like that also and at times I get really battered down but I REFUSE to give up! Our NF2 motto is "Never Give Up!".

I am going to run a 5K this weekend and next weekend because I can. If I can do it, why not? Why give up and squander the gifts I have hidden inside. Some people may think I am nuts that I am going to walk 31.5 miles but I believe I can so I will!

Sure there will be moments nagging at me to stop but I am determined. I REFUSE to back down and let NF2 continue to take hold of me and others and not do anything about it.

Sean Swarner, a 2 time cancer survivor and the founder of cancer climber is one of my sources of inspiration. His words I ponder often and they help me to push through whatever challenge I am facing.

"No matter what your goal, never lose sight, never lose focus, and always keep climbing."

Wednesday, May 28, 2008

"The Suit"

So I am back in the water again (pool for water aerobics). After searching 8 stores and finding nothing in my size, butt ugly suits, or astronomically priced suits out of my budget, I finally found a nice selection at the Sports Authority in Bellevue.

It is a weird thing. When I was a larger person I could only find hideous suits in my size which did not compliment my figure. All the cute suits were the size I am currently. Murphy's Law is now just the opposite is happening! All the styles, designs, and colors I like are in every other size I used to be. What the heck!? It is like my exact desire for a suit collection 4 years too late. I remember shopping with my sister when I was trying to have her help me find something. Gosh it must have been before my honeymoon or sometime in the early 2000s.

I have actually been searching for a suit since the fall. In the NW fall and winter is not the time to shop for suits. Your lucky if you can find a handful and if you do they are rather bland and unappealing.

Anyhow, just when I was about to give up I thought I would try the Sports Authority again (I had checked a couple months ago). At first I thought I was dreaming! I found 8-10 suits in different designs and colors all my size! It is totally a record! I have never gone into a dressing room with that many swimsuits before and they ALL looked great! It is totally unbelievable! Every single one I had to try on again for comparison and to help with my decision. Some of them I elimnated which were out of my desired price range. The others I tried on three times. (hehe - I saw some people walk by the dressing room and they must have been wondering if I passed out or something because I was taking so long).

This is the suit I finally decided on as I thought it flattered me and looked the best on. I think it is the best suit I have ever had! I feel like an athlete in it! When I went to class it held me all in and I had no worries about anything flopping out leaving me to work out to my hearts content.

I am so glad to be back at class as I feel it really makes a difference with my balance. Having a good suit and watershoes brings it all together too. It is of the same importance as wearing the proper gear while hiking, diving, or any other sport. My legs are so much stronger now and there are times where I would have normally taken a tumble when tripping but now I have been able to catch myself and keep it together.

I get the Multiple Schlerosis newsletter as I used to rollerblade in their big Seattle Super Skate fundraiser (25 miles long). They have very good articles and I find that often topics relate to side effects NF2 patients go through also as MS is a disorder of the nervous system also and causes lesions to grow in the brain too.

On the front page of the newsletter was an article about the new hydrotherapy class they have implemented for MS patients. The therapist had explained the exercise benefits of hydrotherapy for patients with MS and other disabilities as it is safe and allows one to do moves that may not be possible for patients out of the water. Further, MS patients remarked on the amazing improvements they have made since starting hydrotherapy. I totally agree!

It is so freeing and I can always safely challenge myself with intensity and the different moves. I used to go to kick boxing and step aerobics when I could hear. When my hearing dwindled I went less and less as I could no longer follow without hearing the beat and it was no longer fun. Now that my balance is gone, I could not even consider going to something which would involve moving around a step nor doing moves on one foot such as kickboxing. The pool allows me to jump around without hurting myself as if I fall there is the water to offer some resistance to slow me down.

New Tread

Ain't it purdy (pretty)? The tread is contragrip which really helps me on unpaved trails and uneven terrain.

My Salomon collection left to right - waterproof gortex hikers, waterproof gortex train running shoes, light weight mid hiker, summer trail running shoes.

Tuesday, May 27, 2008

Burning The Rubber

Pictured from left to right: 2006 pair of Keens worn in the Seattle marathon. 2005 pair of Keens (my first official shoes purchased after losing my balance), 2007 pair of Vaques which are ready for retirement.

No joke! I seriously hit the trail and pavement so hard that I wear the heels of my shoes right off! From the top the shoes look fine but then turn them over. I wear them as long as possible. The worst ones are not used for walking anymore. They are my yard and poop pickup shoes now.

New Running Shoes

pictured from left to right: waterproof gortex Salomon trail running shoes, XA Pro 3D Salomon trail running shoes, old Brooks running shoes.
I finally broke down and bought myself a pair of running shoes that was direly needed. The last pair I bought in 2006 and used them in the summer to train for the marathon occassionally and now I use them for the gym. The pair I have been running in is from the years ago (maybe even the late 90s and I did not even buy them myself). They were a gift from my mom.

So considering how miserly I had been with my need for good running shoes and how important it is for me to have proper footwear due to my balance, I broke down and bought myself a pair. They were half off on the REI outlet. While this pair was still a little steep considering my thriftyness, in the description the shoe offered the best stability and balance for trail running which is a very crucial consideration for me.
They are totally worth the extra splurge! I totally love them and my balance does so well with them that I have been tempted to wear them around and on walks as well. I was able to run up the stairs at the gym and for a new shoe, it has offered me the most immediate adjustment to my balance. Other shoes it take some wearing them to get used to and I feel more steady the longer I have been wearing them. These were instant gratification however!
A bonus of these shoes is that they don't have laces which need to be tied! All other shoes I was constantly needing to tie my shoe after walking around them for a short period of time. In the marathon I even had a teammate tie my shoes for me as my hands were too weak to efficiently make a knot that was not going to come undone. Harley taught me to start tying my shoes in double knots which did the trick but later were a bother to get off and sometimes the knot would not come out requiring me to sit and fiddle with the shoelaces for 5-10 minutes. These are a dream! No tying is necessary! Like my water shoes, a fastener tightens the laces.
The pair with red on them are the waterproof ones for rainy winter days. I got them for a real steal about a year and a half ago. One of the shoes is missing the insole but now that I have the same brand and size shoe for the summer it is easy to just switch them out when the time comes. The shoes in the middle are my warm weather running shoes which I just bought. The yellow ones (Brooks) are the ancient shoes I have been using for years which have holes in them.
The brand is Salomon, the company which is known for making nordic ski boots. Back in my adolescence days when I was a skier, I was very pleased with the nordic equipment they made. I am equally and pleasantly satisfied with their running shoes. I have also purchased this brand for my summer and winter hiking boots which needed to be replaced. The tread on my old shoes is severely worn which results in slips on rugged terrain and hills.

Sunday, May 25, 2008

My Big Hike

I am going to walk 31.5 miles........IN A DAY! Now do I have your attention?

Check out my HIKE4NF quest here:

Monday, May 19, 2008

Long Sleeve Cotton NF Shirt

Also available through
For those interested, Hike4NF can be put on the back of the shirt or "Take a Hike for NF". Further, the large letters NF in blue can be printed on the front of the shirt instead of the fingerspelled letters.
Tees and long sleeve shirts are 100% cotton
Sweatshirts, which are super comfy, are 50/50 blend.
All sizes are unisex.
For the moisture wicking running singlets the custom cut different for a woman and man.
To place an order, contact Deb Hanlon at

Thursday, May 15, 2008

NF shirts

May is NF awareness month and we have new shirts with the option of finderspelled letters for NF on the front.
Deb Hanlon of was gracious to send me two sample shirts. Pictured above is the running singlet made of moisture wicking material. This is the tank style. A short sleeve moisture wicking version is also available.
Other options in cotton material:
hooded sweatshirt
long sleeve mock T-shirt
short sleeve T-shirt
The color is KIWI green with blue writing. The colors are based on the NF Inc. organization colors of green and blue.
hike4NF is also an option to have on the shirt instead of run4NF and also large bolder letters NF instead of the fingerspelled version. You can view what the other ones look like by browsing through various pictures on the website. Just click lighthouse icon in the post title to connect to the website.
To order a shirt, please contact Deb Hanlon at

One step forward, two steps back

Hmmn. Darn it! More expense!

Monday my swimsuit became stretched to the point that it is baggy and looks ridiculous. Last time I went to water aerobics I put it into the machine which wrings the water out of it and I must have left it in there too long. The printed spandex material became distressed and during class it felt kind of weird and loose. Afterward back in the locker room, I looked in the mirror and discovered that my tankini top looked like I was wearing some kind of flowing blouse as the print material seperated from the body fitting spandex. So the quest is on again to find an affordable suit which looks decent before I can return to water aerobics. My suit is pretty much toast and I should not wear it anymore to save myself from an embarassing accident should it fall apart.

Sunglasses (equally as hard to find something that looks good on same as a swimsuit). Who knows what happened to my good pair? Perhaps they flew out of the overhead compartment and became swallowed under the seat which I have not been able to find yet. The cheap spare pair I found stuck between the truck seat and center counsel. When I attempted to pull them out the side got bent up. Upon trying to straighten and fix them one of the sides broke off. Sunglasses are another necessity to protect my eyes. I can't go to water aerobics naked and I can't drive around not being able to see, so those are definitely justifiable and needed expenses.

Ah boofaroo! (I made up that word. At least I think! LOL I thought I made up brain fog too but months later I found out it is an actual thing). Just shy of 2 years old next month, I fried my good digital camera. On Sunday Harley and I went for a walk. I was wearing my new NF shirt that Deb Hanlon sent me and wanted to get pictures of it to post.

I had the padded case attached to my hip belt for my water bottle. When I took off my jacket I had to take off the belt to put the jacket back on after having Harley take pictures. While doing so, the weight of the small camera unlatched the velcro holding it to the hip belt resulting in the camera in its case hurling to the ground. Apparently the impact was too great as the digital display is not working. The screen is not broken but the digital feedback image shows a cracked screen oddly. Perhaps it is cracked inside? So my picture taking has come to a halt until I can get it fixed (if it is possible).

The good news is that I have my computer back after several weeks without. One day it was acting strange so I shut it off to reboot. Problem - it would not turn back on. Harley took it in last week and fortunately it was an easy and affordable solution. The power supply had gone out and needed to be replaced. So now I have access again to people's website that were saved in my favorites and other useful places I like to visit.

Wonderous Dreams

Earlier in the week I had some spectacular dreams of adventure. The first was another one where I was scuba diving again. Shipwrecks were one of my favorite things to explore while I was actively diving. So naturally my dreams have taken me on various wrecks.

This one was not too big...about the size of a tug boat and 100-150 feet long The very top of the boat just reached the surface where one could jump down into the wreck through a rectangular hole the size of a large and wide door which was cut into the deck of the ship.

Because I had not dove in 4 years and the tumors had destroyed my sense of equilibrium, I was afraid to jump through the hole into the dark confines of the wreck. In the dream it was my first time diving again and entering a wreck which is an advanced and technically skilled dive. I feared the darkness and overhead environment upon my first reintroduction would disorient and throw me into a spat of vertigo where I would have no sense of which way was up, down, or sideways. Therefore, I chose to enter the water with on the side of the ship where I could swim around it instead of starting directly inside.

Once I entered the water it was magical! Like riding a bike again for most people, memories of my refined skills came flushing back. It was as if I jumped into another realm where my body was restored and physical limitations existed no longer!

As we rounded the bow of the old boat, we discovered another large rectangular hole cut into the side. One could clearly see that through the opening was a large r0om which had been cleared free of any obstructions. Upon peering inside, I watched a few divers pass into other compartments of the wreck. Then on the wall opposite the large hole, I saw it! Clinging gentling to to ceiling rested a giant pacific octopus! Its whole body was exposed within the room which is quite unusual. Normally one has to peek into narrow crevices along a rock wall to find them squeezed within the cavity.

I could not help myself. Any fear completely dissipated and I was drawn to the inside of the wreck like the calling to visit an old familiar place. I entered the gaping rectangular mouth to get a closer look at the magnificent wonder and further explore what was inside.

After awhile my buddy signaled to me that it was time to exit as he was low on air. Disappointed and surprised, I inquired how low on air was he as I still had 1100 pounds of air in my tank. His gauge read 400 PSI (pounds per square inch). OK. My mind was desperate to stay. I was thinking he could stretch to 100 pounds leaving 300 pounds left to use. I suggested to follow the shallows at the nearby break wall.

Then unexpectectly he surfaced. Did he not understand that I wanted to stay longer and the dive plan I proposed? I was not ready for it to end and did not want to leave. I still had lots of air left! But then I remembered the rule is to always surface between 300-500 PSI (preferably the 500). He was out of air and it would not be safe for us to buddy breath off of one tank just for pleasure nor for me to continue on alone. With that realization, I accepted that our dive was done.

In reality, later that day I went to water aerobics which I have not been to for a few weeks. It was great! Since the water provides me a cushion of safety and bouyancy, I am able to do things in the water that I cannot do on land which is sort of freeing.

At the end of the class I like to grip the floatation noodle with both hands, close my eyes, bend my knees so my feet don't touch the bottom of the pool, hold my breath, and just gracefully float. You see, I can no longer close my eyes and jump into water or swim around. If I do, I get disoriented and am unable to find the surface. By holding unto the noodle I can somewhat recreate the freeing experience of diving into water in the absence of any equipment.

The cool water brushes by my face and tickles my hair while my body floats effortlessly. Only my arms holding onto the noodle anchor me to the outside world. All is silent and all is peaceful as I drift among the pool.

I said wonderous dreams (plural). The following night I dreamt for the first time that I summited Mt. Rainier which at current and for the past 4 years has been an impossibility. My balance function degraded following radiosugery and swelling of the tumor which compressed my brainstem.

Prior to starting grad school I was an avid hiker. Becoming a mountaineer and conquering Mt. Rainier and the other Cascade peaks was a distant dream of mine. Due to the time committment of my graduate studies, I was unable to pursue the training when I was getting close to being able to afford the gear. My plan then was to hold off climbing until after graduation. Unfortunately, my dream came to an abrupt close when I received the news the exact day of my graduate presentation (when my work had been completed) that one of the tumors grew aggressively and large, forcing me to address it and choose a treatment. After that the balance quickly disappeared.

My effort has been constant over the past years to get as much back as possible or at least learn to adapt. The loss has been my most painful emotionally and although I have made great strides, it is like a dagger to my heart knowing I will forever be limited from the things I did and wanted to do. Thus, when I have these dreams it is spectacular and wonderous! For it is in my dreams that I am free.

Wednesday, May 14, 2008

Dreamy! :o)

If only! (sigh) Dreamware catalogues with pictures of clothes and adventures to fantasize about:

Title Nine
J. Jill
J. Crew
REI - which I can afford thanks to the outlet and sales


There is a call for submissions for the summer edition of the ALDA (association of late deafened adults) newsletter. The topic is relationship and social setting changes after the onset of deafness.

What is it like becoming deaf? Let us go even further and ask what is it like becoming completely deaf which comm0nly happens to those of us with NF2?

I had to ponder this for a bit and dig down for an analogy as I like to explain things relating the experience to something one can understand. As I sat among a group of hearing people having lively conversation as if I was not even present, the perfect description I could formulate was as if I were invisible. It happens quite often if nobody signs.

When I went off to college I was very excited and viewed life as an opportunity to start with a clean slate. Since it was so much larger than high school and people from all walks of life and from everywhere were being thrown together, the same ol' cliques and caste system was not in place to limit me. Therefore, I approached the world with open arms and grabbed the opportunity to become involved and meet new friends.

Although I did not win, I had the courage to run for vice president of my hall (dormatory) during the first couple weeks of my freshman year! I also rushed a sorority but decided to turn it down after I was accepted as I liked the path I had been pursuing and the relationships I had already began to forge outside of the organization. So my point is that I was somewhat well known and had a voice. People remembered me and knew my name.

While all this was going on, my roommate (who was shy in high school) was not having as good of a time. Although I tried to include my friend, people often referred to us as "Becky and Becky's roommate". I could not understand then how hurtful it was for her and how excluded it made her feel until now.

While my name is not forgotten, the human being I am often is. The oldest among 3 kids, I have always been in the position of role model and leader. Within high school I became one of the "older" members of our youth group which the younger members looked up to. In college I became vice president of my house and the following 2 years resident adviser in a dorm. At 19 years of age, part of being a staff member was to "jump out of one's comfort zone" and provide your opinion. Further, it was my first real experience where I was expected to give as well as receive constructive feedback. From my involvement in these roles, I became part of a leadership program with 49 other like minded students where we exchanged ideas and refined our ability to interact with and lead a team. Following college, I continued along this teamwork route by becoming a supervisor where it was customary to have meetings where everyone's involvement and ideas were shared. After being a supervisor for 4 years, I enrolled in the Master in Teaching program at the University of Washington where we often broke out into focus groups and teaching meant leading students through inquiry projects and lively discussions.

Shortly after graduation, when all my social skills had been perfected and it was very normal to become involved in discussions providing my input, it all shut off. I can't tell you if it was instant as so many things were happening to me beyond deafness that I was propelled into a state of shock. Further, while others had to adjust and remember that I was now deaf and could never interact the same way again, I myself had to endure the exhausting work of learning to become deaf. This involved how to identify myself and inform people, learning a new language and alternative means for communication, building an awareness to things using other senses which for at least a year were stunted due to side effects of the swelling tumor and radiation, and learning how to feel vibrations to replace the hearing that was now gone. As others with NF2 who have recently become deaf following surgery are learning, it is a great deaf of work and really saps the energy.

Because of dealing with all the side effects of my condition were thrown upon my plate at once, it has taken a while to fully grasp and comprehend the hearing loss. For at least a year and a half I was muddling through like a zombie. When various side effects began to subside and I had tackled the process of learning become deaf, then the realization of these changes became clearer.

I don't think people intend to be hurtful just as friends and acquaintences in college did not mean to be toward my roommate. It is a combination of things, some people may be afraid and not know what to say, others will just forget as by hearing me speak and looking at me (I am only 36 years old) I would not appear any different, and then there are those who rather not expend the effort to communicate with me differently and prefer to mingle with the hearing people which is easier and more comfortable. Meanwhile I sit and wait, contemplate the situation, try to focus my mind on something else like noticing my surroundings. When that gets old I try to day dream. After that is exhausted I try to focus mentally on a task which needs to be done. Sometimes I just stare blankly at the moving lips trying to pick up something as if I am following the conversation.

When I had residual hearing I was a pretty good lip reader and functioned as such for several years with the aide of a wireless FM system. Yet, in the complete absence of sound it is a very different story as there is no sound to associate with the movement of the mouth. Lip reading was intended for those who can hear at least something. When one cannot dicipher the sound, watching the formation of speech helps to fill in the gaps. However, even then only 20-30% of speech can be read this way. Because I was born hearing and had heard speech for many years before the onset of my hearing loss, I was familiar with the sound of words and was more successful using speech reading as an aide for a word I could not determine through hearing alone. When you take away the sound, all you see are people moving their mouths with no idea what they are saying.

So after being frustrated at watching their mouths move and falling deeper into hopeless isolation and boredom, I can stand it no longer to the point my skin is crawling. I cannot speak when there is noise or a bunch of people talking as I have no idea what the volume of my voice is compared to the surroundings and I don't know if I am rudely interupting. Restaurants are horrible places to try to evaluate. When I do speak, I find that either the other person cannot hear me because I am talking normally but the atmosphere is loud. Then other times the restaurant may be kind of quiet and my normal volume of speech is too loud so the other person gets embarassed and tells me to lower my volume. Sigh! It is just impossible so I prefer to write or sign.

Back to the situation when the group is chittering away.........Desperate for some involvement, I again focus on their mouths and each person. I try to target someone sitting right next to me or within arms reach. I wait until the person is not speaking or does not necessarily looked engaged in the conversation. Sometimes that is just not an option and everyone is engrossed but I can stand it no longer so I pass the person a n0te letting them know I am here and attempting to get some interaction.

Rarely does anyone who is hearing take the initiative to start a converstation with me in these settings even though my paperpad and pen are sitting on the table in front of everyone. It is as if it is invisible just like I am. I like I am in the movie "Invisible" where the young man who is between life and death is present but nobody sees him. Every once in awhile I have to wonder if I am actually really there or if I am in a coma somewhere but do not realize it. Other times I wonder if this is what it is like to be dead but not able to let go of my physical existence like Patrick Swayze in the movie "Ghost".

The Diving Bell and the Butterfly

This evening I finished watching the extraordinary film "The Diving Bell and the Butterfly" that is about a man in the prime of his life who suddenly suffers a stroke leaving him paralyzed from the neck down, with only one usable eye, and unable to speak. It is almost unbelievable and hard to fathom but yes, it is a true story written by the man himself who is what the medical community refers to as "locked in".

Prior to my first brain surgery last fall, a friend asked me "what are you afraid of?". While I have been forced to consider the reality of my mortality since age 21, death is the less scarier concept. As every person with NF2 who has faced a brain surgery can relate, we are all familiar with the possibility of something going terribly wrong (sometimes out of medical hands and just left up to fate) leaving us in a state very much like Mr. Bauby in the film. The brain and brainstem are delicate structures and whenever there is a tumor or the need for a surgery, stroke is always on the list of risks. It happens. Some people are able to recover and some are not.

My fear is becoming like Mr. Bauby. Yet, at least he could still hear. Imagine having everything and every ability stripped from you except partial sight to see what is going on. I have often pondered what I would do if I were to suffer such a trajedy. I have also wondered how I would manage becoming completely deaf and blind with no balance function (a very real and discomforting thought; I spent 30 minutes a day for 3 days confined to no movement in the absence of hearing and sight during my cyberknife treatments in 2004. Although brief, each half hour was scary and a challenge to keep the mind focused long enough on productive thoughts to pass the time.)

Because he can hear, the speech therapists workout a way to communicate with him where he blinks his eye for the correct letter. Incredibly daunting, slow, and frustrating the communication, those who truly care stay and do not shut him out. While those with NF are not reduced to blinking for communication (at least most), like Mr. Bauby communicating with us changes. Those who accept the change life has forced upon us and are sincere in continuing a relationship or getting to know us will stick around and adapt together with us. Unfortunately, not everyone is who we thought they may be and relationships change and dissipate while some bonds become stronger.

In the beginning of the film (as told through the perspective of the locked in patient), Mr. Bauby is confused and in shock much like those with NF who wake up with unexpected or unprepared surprises such as complete deafness and facial paralysis that may affect the ability to close the eye lid. It can be a very lonely experience like being trapped in a box and yelling but nobody can hear you.

It is interesting the phases he goes through to reach acceptance and find a way to cope with his lot. The situation completely blows my mind and I find his story incredible. It is a good film to try to gain an understanding of adversity and the realities that those with NF face.

Enough now. You will just have to watch the movie for yourself. The link to watch the trailer can be accessed by clicking the lighthouse icon in the post title.

Friday, May 09, 2008

Inspriational Autobiographies - My Recent Splurge

I am tickled pink! Yesterday I went out and splurged on myself. No. I did not get a pedicure, a manicure, a facial, a massage, a new outfit, make over or anything like that. I went to half price books and treated myself to three inspiring autobiographies that I have been wanting for a while (years).

No. I am not a voracious reader who reads a novel per week or even per month. It is very seldom that I even read books for pure pleasure. The few I have read I can name off. I used to read many fictional books prior to Junior High. However, once entering secondary school and on through college my reading time became absorbed with study of various texts and articles(mostly science and then later management and teaching).

I have always taken pleasure in watching movies and since the onset of my hearing loss and then deafness, I have actually spent years reading them as I must watch all programing in closed captioning to know what is going on.

So it is interesting. My reading has almost entirely been based on being informational to some degree. I do enjoy reading of true adventures (either from a magazine, the internet, or a website of someone actually doing the activity). Seeing such shows (I am a big sci-fi fan) and reading and viewing pictures of people's journeys is my form of escape just as it is for those who are big novel digesting fans.

As far as reading books, I enjoy learning about something that is going to help me be a better person. Throughout the years I have always preferred some sort of self improvement book (which includes leadership type of material) but most recently I am fascinated by autobiographies of incredible people who find a way beat to the odds and go beyond what was expected of them. To me they are modern day heros and warriors that posess the characteristics I long for. What made them a survivor? What quality motivated them to step out of the box of average thinking?

I am excited to delve into their stories!

The following books I acquired yesterday are written by people of such character:

Every Second Counts by Lance Armstrong
Still Me by Christopher Reeve
Touch the Top of the World by Erik Weinhenmayer (the blind man who climbed Mt. Everest)

Back to Health Now

Thanks to everyone who emailed me, IM'd me, and left comment posts regarding our bout with food poisoning. Fortunately, the saying "What Stays Happens in Vegas, STAYS in Vegas" holds true! Harley was fine when we returned and I took a day and a half to rest before resuming my normal activity level. My poisoning had come on friday the week of our vacation so I spent 3 entire days lying in a hotel bed or on the floor waiting for it to pass.

This waiting for recovery is becoming very familiar to me now as that is what I did many days while going through chemotherapy for cancer, during the time when the effects of swelling of my brain tumor post radiosurgery left me dizzy just opening my eyes while lying in bed, and while waiting for the nausea to pass and couble vision to subside after my recent surgery. I don't like doing it as I generally cannot even watch TV or read but I am getting used to it. I just hang in there believing the quote "This too shall pass."

One positive aspect about the food poisoning experience is that it was really awful and I handled it. I had a very bad and scary time when awoke after my surgery. Drugs don't sit well with me and I opened my eyes to convulsions, chills, a loud hammering noise in my brain, and my least favorite of all symptoms of violent vometing. It was a horrible rude awakening because I expected to just be out of it and resting peacefully from some kind of pain killer like morphine. My thought was that I might not even wake up until a full day had passed. Instead, just the opposite happened as my body underwent a reaction from the anesthesia hurling me into an uncomfortable consciousness shortly after the surgery. I don't know if there is a different anesthesia they can give me next time, but it is an experience I thoroughly dread going through again! However, I suppose it is better to just be throwing up violently than having diarrhea combined at the same time. Thid is the thought I will hold on to and try to think of when it happens again......."It could be worse".

So last tuesday of last week, after a 6 day absence from my training and then days of lying around, I got back to work.

Tuesday night: brisk 45 minute walk with the dogs
Wednesday night: 30-32 minute run followed by a half hour of weight lifting
Thursday night: just shy of a 2 hour hike with the dogs
Friday night: 36 minute run followed by a half hour chest workout
Saturday: 45 minutes at the gym which included leg lifting routine (can't remember about walk)
Sunday: 1 hour brisk walk on trail with Harley and the dogs
Monday: 20 minutes on the cybex machine, 1/2 hour upper body weight lifting routine, 15 minutes on abs and balance, about 1 and half hour to 2 hour hike with my sister and dogs
Tuesday: 38 minute run
Wednesday: just over an hour of hill work in Daniel's ranch
Thursday: 35 minute run following by stretching, abs, and a half hour leg lifting routine

Today I am due to go for a walk/hike on the Snoqualmie trail out here (preferably 2 hours)