Monday, June 27, 2005

Do What You Gotta Do

Back when I was 21 years old and had cancer I had an instructor tell me "Do What You Gotta Do" in response to my need to undergo chemotherapy and miss class. I was not sure how to take that at first and it seemed almost an uncaring attitude. Later I had someone tell me the same phrase. The meaning never really hit home for me until I deeply pondered it a couple weeks ago while trying to battle the insuing depression of the situation at times.

There was a particular day when it just seemed like everything was caving in. All these events relating to NF2 were coming to a head, my dog was recooperating from knee surgery which was not cheap, she had some lesions which I feared may have been ringworm (but later found out it was a coon bite), mice had snuck through a vent under the deck and a hole under the kitchen sink making a mess in my cabinets, and so forth. As if the things I was dealing with the NF2 were'nt enough. I began to get angry and ask God "Why are you letting all this happen to me???" My husband seeing my frustration as I was taking a great deal of it out on him said "Becky, life is going to go on for you. It does not stop just because you have NF2. Lots of people have these things happen to them" (like mice and ringworm).

Then a light bulb seemed to click on and I more deeply understood the phrase I had been pondering a week earlier. He was right. None of these other things called "life" will cease to exist due to my circumstances. I learned when I was young that when you fall down you get back up, brush yourself off, and go on. In his autobiography titled "Still Me", Christopher Reeve would get up and cry for 20 minutes each morning to feel sorry for himself. He would allow that much time to grieve every day. When he was finished he would put his sorrow away and move forward with the rest of the day.

I have reflected often on what his life must have been like after the accident. While walking the other day I thought, well I might not be a hot dog anymore on rollerblades or waterskiis but I am able to move my limbs and enjoy this walk with my dog. I thought about what his family went through as I peered into the creek. His one wish was that he would be able to hug his son. A simple thing that we all take so much for granted. I can move my arms and hug anybody I wanted but it was reading about his quadreplegia that made me realize what a gift I had been granted.......that I can still embrace my husband and run my fingers through his hair. Christopher Reeve was never again able to do that for his wife.

So today after the dentist I accidentally hit a curb I could not see in the rain while making a turn. My tire had instantly gone flat. I pulled into a parking lot and wondered "Now what am I going to do?". After all, life must continue on.

I walked over to a Kinkos and had an employee call my husband to explain the situation and for him to please come down to meet me. I had not changed a tire since I worked for the WSDA 5 years ago and I was not as strong as I used to be or had the balance. I returned to the car and proceeded to go through the steps in my memory.

Everything went well except I could not loosen the dang lugnuts. I did not want to put too much into it where I could injure myself from falling or rolling over or knocking the car down. Luckily it had stopped raining. I continued to work on the flat while MANY people drove right by me staring or walked back to their cars from the store. It is possible that some may have asked me from their car or behind me if I needed help but I could not hear them and did not respond.

While all this was happening I thought about how when I worked for the MDA and the WSDA, several people would stop to ask if I needed help when I actually had it all under control. It was kind of funny and I admit I felt slightly sorry for myself because when I needed help nobody was really coming to my aide. I began to wonder if I was turning the lugnuts the wrong way. I pulled the manual from the glove box and read the instructions on changing a tire. I had done everything right. Disappointed I returned to my flat tire and the lugnuts.

At that moment a very nice man came up to me where I could see him and I read that he asked me if I needed help. I responded that I actually did and only needed him to loosen the lugnuts for me because I did not have enough strength. When he did so, I said I could handle the rest but he insisted upon helping me complete the process. After the tire was changed I thanked him and said that I could take care of the car jack. While breaking down the car jack a nice hispanic young man came over to see if I needed any help. I assured him that I had it all taken care of but thanked him for stopping.

Later when Harley picked me up at the tire and brake shop he was very proud of me. Even though I was not strong enough to release the lugnuts I was pretty proud of myself too as I continued on and tried to solve the situation. You have to admit that as silly as it may sound, there are many people out there that have no clue where to begin to change a tire. I was just bestowed another priveledge that at first glance would be easy to overlook. First of all, I still have the ability to drive which is a rather HUGE freedom. Second, I had the ability to solve the problem despite the obstacles I now face (deafness....meaning I cannot jump on a cellphone or payphone to call for help and it can be complicated trying to get help when you can't hear; plus my balance and strength are poor right now and I was unsure about changing the tire myself).

The morale of the story is that no matter what your grief is, life is going to go on with or without you and if you choose to be proactive and a part of it you must "do what you gotta do."

Saturday, June 25, 2005

What is a Hero?

"I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."

- Christopher Reeve

Wednesday, June 22, 2005

Ideal Nightly Regimen


After brushing rinse mouth thoroughly several times while holding my lips shut to get all the food out that has become stuck in my teeth.
Floss all the teeth while paying special attention to the gaps that have formed in my upper back molars.
Rinse mouth continuously with water to get out additional food.
Use Prevident (prescription flouride) to rinse mouth for 30 seconds.
After guzzling lots of water due to dry mouth and thirst, apply a thick gel substance to my gums (fake saliva) to try to protect my mouth for the night.


Wash face of course.
Apply Refresh Gel Drops to both eyes (seems to glue my left eye shut by morning)
Ideally I should probably tape the right eye shut but I don't.


Apply dry skin lotion (called Heal Rescue) to all the thousands of cracks in my callused feet.
Put on socks and wear to bed to lock in moisture.

I have to admit I get kind of lazy. First of all, I usually watch a netflix in the evening but end up falling asleep from my medication and I get just plain tired out of trying to keep up with reading the captioning. I wake back up between midnight and 1:30 am to do my regimen. My mouth tastes terrible by then and I have to brush my teeth for relief. Plus I do not like the fact that I am spending oodles of money to repair them. Sometimes I am too lazy to wash my face after the whole mouth ordeal and I just put the drops in. Now that summer is here I go barefoot alot and don't pay as much attention to my feet until they get really bad.

Saturday, June 18, 2005

"I get by with a little help from my friends" - Beattles

Today turned out to be a gorgeous day and two of my good friends I have met through learning ASL (American Sign Language) and I went to the annual Deaf and Deaf/Blind picnic in Seattle. We met one of our new friends there who just moved here from the east coast. The food was great! It seemed people at all of our dishes.

Afterwards, we decided to take a walk down by the beach (for those who know the area, I am referring to the fantastic Lincoln Park of Seattle). The park was packed and all the shelters were taken. At the beach there were people swimming, children playing in the water and on logs, people walking their dogs, and some on bicycles.

Even though the path was flat, I was acutely aware of my difficulty negotiating my balance. At the picnic, a man has asked me in sign if I was ok. There was no alcohol there so I do not think he misinterpreted me as being drunk. He seemed to understand when I explained briefly why I might have been traversing from tree to tree and grasping on to each one.

As I walked I could not help but think of when I lived in the area and had rollerbladed and ran along the path with full freedom of mobility. Reminiscing about this made me sad. I could not help but think about my youth just only a year or so ago. I tried to block it out of my mind and instead focused on walking the path.

Then we decided to sit on a log for a short bit to admire the mountains painted perfectly behind the sea and the sailboats bobbing on their moorings near the ferry dock. It was sort of a challenge to navigate safely over to the logs so I picked one closeby.

Our one friend grew up on the Monterey Coast and was overjoyed to play on the beach again just as though she were a kid again. I watched her excitedly run to the water. At the same time, I noticed two small children dancing from driftwood log to another and I found myself entranced. I thought of the days when all of this was thrilling for me and jumping among the logs or rocks was an easy skill.

I turned my focus back to my friends playing along the shore. The waves gently pushed forward the bright green sea lettuce that was so familiar to me. In the sun, the wet pebbles glimmered in a multitude of colors against the grey brown sand. As I looked into the waves and smelled the sea salt all I could think about were the days not so very long ago of diving on the shores of Puget Sound and my love of the beach.

It was all exhilerating yet utterly overwhelming. It seemed everywhere I looked was a reminder of who I used to be and what I loved so much about life. My heart was crushed! It was as though someone just delivered the harsh blow that my husband or one of my loved ones was instantly killed in a devastating crash! I became crippled in a wave of emotion I could no longer escape from.

Now I know how my dear friend's mother felt when I went to visit her family shortly after her death. Anne Marie was killed instantly in a head on collision just a few days before Christmas. I thought it might make her mother feel better if I brought her a nice bouquet of flowers. The moment she saw me and the flowers in my hand she broke out into a fit of tears. I felt horrible I did something to offend her. I later discovered that Anne Marie regularily brought her mom a bouquet of fresh flowers when she came home from college.

At the moment the same feeling of grief overcame me. I tried very hard to hold it back because I did not want to ruin the good time my friends were having. The more I held it in, the worse it became. Since I can no longer shed tears or cry I started hyperventilating hysterically. My friends inquired if I was ok and of course I responded that I was. I tried my darndest to hide it but it got to the point that I could not even speak and it was becoming difficult to breath.

I did not want them to leave the shore but of course they did. I was not even capable of explaining what was happening. They came over to where I sat on the log and helped me get into the rythym of taking slow deep breaths. I had to concentrate extremely hard to do so. Everytime I looked back out at the water or the beach I would just lose it again. Thus I either had to look at my friend gesturing to take deep breaths or look straight down at the log.

I picked up a couple rocks and focused on them. In the meantime, our one friend whipped out her little pocket knife and began to build a boat. When the task was complete she went down to the water, whipped off her shoes and socks, rolled up her pant legs, and braved the frigid Puget Sound water to set the boat asail.

My other friend and I watched intently and laughed at the playful sight. It worked! Her boat that she built was bobbling away down the shore in the waves. When she returned we began to rock hunt where we sat and I began to spill out my limited knowledge of minerology and interesting tidbits of geology. LOL We found lots of rocks referred to as "gneiss" and I cracked my joke about the "nice" rocks.

They intently listened and laughed at my silly jokes. I continued on about the similarities and differences between the geology of Puget Sound and the various places I had visited on the Italian coast. The shift in attention toward the boat building experiment and my incessant ranting on about rocks and geology seemed to stop the hyperventilating episode. I was actually breathing normally and talking again.

Thanks Laura and Melody! My day would not have been the same without you!

Friday, June 17, 2005

An Old Rag Doll

Monday after breakfast I bit down on something hard after breakfast (late...around 10 am). It took me a good hour to realize what that hard thing was. It was actually a 1/4 chunk of my upper molar! When I went to take Katie to the bathroom and spoke to her, I noticed the large, sharp gash in my mouth. Tuesday the same thing happened to the molar on the other side of my mouth yet the piece was smaller.

I told my father that I felt like in an old rag doll because I was falling apart. A rag doll is much loved throughout the years but eventually the limps and clothes get tattered and the eyes, nose, and mouth either fall off or begin to fall apart.

It seems within the past year something new and unpleasant is always happening to me. Not trying to be negative but the word "better" is beginning to lose its luster. Everytime I begin to feel "better" or think I am getting "better" something else gets thrown in the mix.

Ok let's count it up: 1) I no can no longer hear any sound (which I resigned myself too and felt was fine if that was the only price to pay)
2) Half of my face has suffered from facial weakness which not only affects my outward appearance but has physical consequences as well (such as loss of tear production, the inability to completely shut my right eye and thus blurs my vision, and double vision at times) 3) I have lost most of my sense of balance and stagger around the store like a drunk and it is draining to try to walk normally let alone trying to walk as far or as fast. 4) Not sure how to explain this but my eyes are messed up now. I can no longer look to the side of me without losing focus (like falling down or driving off the road.) I believe this is called my vestibular ocular reflex (VOR). It is the inability of the eyes to maintain focus on an object while moving. Thus when I am moving I cannot make out faces and I must completely remain focused ahead on the road while driving. 5) My damn back teeth are falling apart! 6) My hands and feet routinely go numb and feel uncomfortably prickly (like pins and needles are being stuck in them). I have now learned that this might be due to a condition called "neuropathy". 7) My hair in the front of my scalp has begun to thin. 8)I am not sure why but recently I have had certain pain or stiffness in my body. My back is thrown into spasms when I am doing the dishes for a little while, my ankle is stiff and sore, and my one thigh muscle has begun to get sore and cramped up as if I had been at the gym the day before doing squats. The truth is I rarely work out because I am so weak now. Just going for what I used to consider a short walk is absolutely exhausting now and I am slower!

If you were to repair a rag doll it would not be as costly unless of course you decided to use diamonds and emeralds for the mouth, nose, and eyes! Each root canal costs over $2,000 (only a very small portion of that is covered by dental insurance)! I need at least 2 (which would make it a total of 4 root canals in my lifetime).

I guess that is the price I pay for staying alive. Yes I brush my teeth. The dental problems stem from the chemotherapy I went through 12 years ago. The problem is compounded now due to the radiation and meds causing "dry mouth" from decreased saliva production (you need saliva to kill the bacteria in your mouth).

On the plus side, my fingernails are harder than they have ever been (they were always soft and easily breakable before). In addition, the facial weakness has made the genetic wrinkle between my eyes disappear!

Sunday, June 12, 2005

Love That Aroma!

It is interesting h0w my sense of scent has become heightened since the deafness. I don't know if this is true for all people afflicted with NF 2. For me though, I can't seem to get enough of pleasing scents.

I have generally been one to stop and literally smell the roses even before I lost all my hearing. But now I can bury my nose within one flower and not want to leave. It as though I cannot sniff enough essense out of it!

A couple of the scents that were always my favorite were fresh linens (blankets) that my mother hung on the clothes line while I was growing up. LOL That is provided the nearby farm was not running liquid manure that day and the wind not had shifted it in our direction.

Later, as an adult living in Seattle, I use to cherish the smell of the sea salt combined with wild roses as I raced against the sunset on my rollerblades at Alki beach.

Now I know those are not examples of scents as a deaf person but now I can literally be on a walk in the countryside and smell a hamburger at the gas station a mile away! I have often noticed that I can either smell things that others cannot or I smell them long in advance.

A few of my recent favorites are:
1) the realization the large blueberry bushes grow flowers that have a very pleasing and a light but sweet aroma
2) the smell of the earth at dusk, during the rain, or after a fresh rain
3) today the scent of fresh quilts out of the dryer that I could become lost forever in

Of course there are many others such as most fruiting trees or aromatic flowers (hyacinth, freesia, and daffodil), and the smell of my husband's deoderant and a clean white t-shirt but these are what came to mind first. Oh yeah, the smell of summer is here. It made me want to put on my rollerblades anyway the other day and has made me determined to want to go diving again.

Friday, June 10, 2005


Shoes. Who would ever think that shoes could be representative of a basic freedom?

I was just in my bedroom trying to pick up things seeing as I am a little more motivated to do so today. I have been thinking about some of my shoes for a month or more now. What to do with them??

Under my bed were three of my favorite pairs of shoes that I have not worn in months! They were great shoes. It made me sad to see them. I have never been a stiletto type of person but I could wear shoes with a nice chunky heel.

The shoes were some of the basics to any woman's wardrobe. Two black pair and one mother of pearl white sandals that I wore at my wedding and used as part of my "going to a wedding" attire. As a matter of fact I think I wore them to every friend's wedding since mine in 2000 except the two latest weddings I attended where I wore a darker color.

The last time I wore them was right after treatment when I went to my friend Kate's wedding in July (when my balance was still reasonable.....not the best but much better than now). I thought I remember the heel being more flat and incorporated with the shoe but alas when I just looked the heel was definitely a seperate part of the shoe.

The two black ones were also for dress occassions or for wearing a power suit or gaining a bit of height. One pair was a platform shoe which I could wear amazingly well and I loved the days when I wore them teaching. I could squat down on them comfortably at eye level or desk level distance when working one on one or with a small group of students. The other pair was black swede and I loved wearing them with winter outfits (especially to winter weddings).

Ahh well. Harley never liked it when I wore heels anyway. So I guess it is back to flatland like when I was a kid.

Funny Dogs!

I awoke at 8 am and checked on Katie because for the first time I left her outside for the night leashed to the deck. Normally she is put in the garage at night and because it is darker in there she sleeps late. Anyhow, both she and Jake were sleeping away. Jake is a good boy and does not bother her. All he seems to do is to steal any rawhide bones I give her when we has his own that he hides or buries somewhere in the yard.

So I go upstairs and check the cyberknife society message board where I have been consulting with some other cyberknife doctors from around the country. Nobody seems to have a clear idea of what is happening to me and my side effects and digression are rather rare. It has been suggested that maybe I should have surgery to remove the dead tumor from the experts here. Therefore, I finish writing an email to one of the doctors elsewhere in the country (both did not think surgery should be exercised unless I was suffering from edema, hydrocephalis, or a serious compromise to the brainstem).

After I finished explaining the details of the MRI reports and the tumor size I went downstairs to check on Katie. It was nearly 9 am and she was definitely awake! Somehow she had managed to pull this great big floral pot on wheels over to her area. Fortunately I had not planted anything in it yet since the daffodils this spring. Here she was standing up in the middle of the pot with her front paws on the deck railing. Her tail was just a wagging! I have no idea what she was doing. Maybe she had to take a leak and I was not done there to let her off leash. Perhaps instead of peeing on the deck she chose to pee in the pot. I really don't know.

When I took her out in the yard to go to the bathroom it did not include number 1. Thus that leads me to conclude that is what she was doing standing in the pot as it still had some daffodil greenery in it that looked somewhat like grass.

Hey mom does this remind you of something? LOL :o)

Tuesday, June 07, 2005

The Lone Tear

I have not been able to cry since probably last September or August because I lost tear production. This worsened in my right eye where the facial paralysis took over in December. Despite being really down lately I am glad to have shed a single tear out of my right eye on three seperate occasions this week. None of them involved emotion so I am still unable to cry which is quite frustrating given the circumstances.

My 3 occasions:

1) I was chewing on baked lays one night and it hurt to swallow them.
2) For some reason a tear dropped out of my eye at the end of the movie
"The Aviator" last night but I did not feel overly emotional. I just felt sorry for the Howard Hughes.
3) I opened the oven and the heat seemed to produce a tear.

Thursday, June 02, 2005

The Cutest Thing

The included link discusses China's research into the role dogs (and animals) play in helping improve patient attitude and recovery. My dogs make me really happy and create a pleasing release from thinking about NF2 and the things I am going through. I can't imagine my life without them.

Last night I fell asleep on the daybed next to the large windows overlooking the deck and yard. I awoke to a funny but cute surprise. There are two plastic whiskey barrel pots containing lavendar just outside the window and literally adjacent to the daybed. One of the pots has a ceramic bunny planter sitting inside it.

Amazingly Jake had managed to climb into the pot and squeeze himself next to the ceramic bunny! He was all curled up sleeping but crushing the lavendar plant Harley had bought me. I did not have the heart to wake him up and shew him out of the pot. I decided to wait until Harley came home from work 15 minutes later.

It was so cute that it was hard to get mad at him. I wish we had taken a picture. I let Harley do the deed of telling him to get out of the pot. He knew he was in trouble as he was quivering but he also knew he was cute as he was wagging his tail. Therefore, Harley decided to help him resist the temptation by surrounding the planters with deck chairs.

This is just one of the small things I like about having my dogs around. When they play together it is fun to watch them. They have games just like ordinary children where they play hide-n-seek, chase, or bury and find the bone. There are also times when they cuddle up with one another.