When Scary Things Go Beyond Bump in the Night

Something terrifying happened to me the night before last. While sleeping I think I felt this incredible pain. I believe I might have been having another bad dream. The pain increased and I briefly awoke (half conscious really) to find myself practically biting off my dang tongue!

I am not sure if I even fully woke up or thought I was still dreaming. I vaguely recall the realization that the pain was caused by my teeth ferociously knawing at that big piece of tissue that helps us form speech. However, I did not get up at all. I just fell back to sleep or rather kept sleeping.

I had forgotten about it when I woke up. To my surprise when I looked in the mirror to inspect my eyes, I found dried blood on my lips! Confused and startled for a moment, I felt a little soreness on my tongue and just barely remembered the tongue incident. I opened my mouth to find some more blood and a definite sore/blood clot indicating my tongue had been bitten.

My first thought was shock that I even bit my tongue. Never before in my life have I ever injured myself in my sleep! My second thought was "What if I actually bit my tongue off? How long could the tissue survive in order to be attached? How much time would I have had? If that happened could my tongue be saved with no speech impediment consequences?"

I have to admit that I found the event rather horrifying and was afraid to go to sleep last night but ended up falling asleep on the couch while reading an ALDA (Association for Late Deafened Adults) article. Yesterday morning and afternoon I was in complete disbelief that this happened or the big question "WHY?". Are there other people who have done the same or is this just a rare occurance?

My first hypothesize was that maybe I was having a terrifying nightmare in which biting my tongue was involved. You know.....like on the show "24" or about some CIA operative being tortured. Maybe I was an operative or agent and was being tortured to the point that I bit my tongue. Or, maybe I got really hungry and subconsciously thought my tongue was some juicy morsel.

My worst fear that entered my mind during my morning commute is that maybe I had a seizure. How scary! I will never know the answer.

Of course being a deep person, I had to analyze the situation and configure a meaning behind it. Most deaf people (born deaf) do not speak. I, on the otherhand, can speak a great deal and over the past couple weeks I have felt the weight of conflict with my category of deafness. Perhaps allegorically, I felt that I should speak less and sign more to become more fluent. Thus, my subconscious was thinking I should hold my tongue while my body literally reacted in a dream state by trying to bite the darn thing off!

The Silent Buzzer

For those of you who did not know, I am completely deaf. What that means is that a bomb could go off in the background behind me and I would be totally unaware the exception of feeling any applied force given off from such a explosion. So when I tell you that the "Sonic Boom" feature of my alarm clock has been rendered completely useless you know what I am talking about.

So how do I or other deaf folk wake up anyhow? Are we naturally trained or prone to just "wake up" when the time is right? Ahh no. LOL I have an alarm clock (yeah the sonic boom one) that has what is called a "bed shaker". No it is not like on the movies when you see X and B rent a cheap motel room in Nevada that shakes when fed a coin. Attached via a cord, is a little flying saucer shaped device the vibrates when it is time for the alarm to go off. It can either be set to "steady" mode or "pulse". I set it to pulse so I do not sleep through it thinking I am in a massage chair or in a long earthquake.

Anyhow, the idea is that you put this little flying saucer shaker thing under your pillow so that it vibrates your head in the morning. LOL I actually slept through it once in a dream of great havoc! In my dream my head kept vibrating and nobody believed me! It was awful! (In the dream) I kept telling doctors and nurses that something was wrong with my brain because it would not stop vibrating and was causing me headaches and rendering me unable to concentrate. They did MRIs on my brain and found things unchanged so it was a mystery. It was horrible! My head just kept vibrating. In reality this went on for just over an hour until I finally woke up thank God! It is no fun to have a vibrating head/brain for that long a period of time. Thus it normally does the trick to wake me up.

For the second time however, the dang vibrator (the flying saucer device) snuck out from under my pillow. On both occassions ironically, I was too tired the night before and had planned to wake early to type up my homework for class that morning. The first time I had woke 20-30 minutes before I was to leave the house to meet my carpool. This time however, I managed to wake up about 30 minutes earlier giving me enough time to type something from memory (al beit cheesy and half ass) from my receptive translation video I watched the night before.

When I awoke there was more daylight out. Confused I looked at the clock and realized I had slept a little over an hour and a half longer than I had planned to wake. Mad at myself and the clock, I double checked that I did indeed set it for AM and not PM. I thought I had remembered double checking this before I went to bed. The alarm was still enabled for the correct time. Angry, I wondered what the heck was wrong with the stupid clock. Everything was set right! Then I followed the cord to the flying saucer shaker where it ly gittering on the floor in the crevice between the bed and dresser.

If Harley was on night shift he would have been able to hear the shaker knocking between the wood of the bed and dresser. But, because he is on day shift, he leaves for work at 5:30 in the morning. Neither his stirring or turning on the lights wake me so I continue to sleep until I wake 3 hours later to the vibrations of the bed shaker.

There is also a light flasher option on the alarm clock (meaning that it can be hooked up to a lamp which will flash on and off when the alarm goes off). Seeing as Harley will not be home, I may connect it and try to see if that helps. I have been known however to sleep through lights. Most often I awake to the bed shaker. It is only twice now that it has fallen out from under the pillow. I must have moved around and knocked it off the bed.

Medical Note to Self

Date: Feb 25th 2006

• unexpected nosebleed (strong) while looking down reading a book after doing 15 pushups
• after bleeding ceased, rode the exercise bike for an hour while reading
• worked within the yard for a couple hours today and balance seemed good (wore lightweight hiking boots)
• after coming in and eating dinner, I became lethargic and experienced increasing head pressure on the left side and a few sharp jabs of pain behind the left ear; the duration of the head pressure seemed to last up until riding the exercise bike
• Before waking, experienced bad dreams which resulted in verbal shouting in my sleep and hitting my husband while unconscious/sleeping (fortunately not dangerously)

Date: Feb 24th, 2006

• awoke to leg cramps in the lower calves (been having for about the past 4 or 5 mornings); This was my laziest week and I did not walk or exercise for 4 or 5 days due to everything that was going on this week. It seems to be crucial to my functioning and coordination to at least walk for an hour or ride the exercise bike every other day if not everyday.
• experienced involuntarily muscle twitching and contractions of the lower area under the left eye both morning and evening (has been occurring for the past 2 months; cannot be felt but only noticed or seen when looking in the mirror
• last filling performed at the dentist in the afternoon; face on the left side was frozen for about 6 hours and it felt difficult to talk
• incessant fear of going blind continues; right eye sore and blurry in the morning and at various times of day. There are moments after lying down that my right eye experiences somewhat of a blackout or narrowing of the peripheral vision.....NOT FUN

Note: last MRI was performed on October 25 with the previous on July 25th. Recommendation was to have a repeat MRI within 6 months which would be April 25th. At the time of the last reading in October the left side tumor (smaller untreated tumor) appeared to show no growth and the right side tumor (vestibular schwannoma - the larger treated one) appeared to be stable and to cease swelling. It continued to show signs of necrosis but had not yet collapsed and was still pressing on the similar in size right side meningioma (both of which continue to distort the brain stem).

Some days balance seems to be ok or slightly improved and other days seem to be a complete washout (digression or lack of coordination). Oscillopsia is still present and annoying. Dealing with it on most days is achievable but some days I am completely overwhelmed.

On a positive note, my memory seems to be improving over the past few weeks to a month. I had experienced great difficulty with short term memory loss probably commencing in the late summer or fall. It continued to worsen and things that were once easy for me (such as spelling) became very challenging and I became very forgetful of things within a few minutes. I have noticed in my recent ASL assignments and quizzes that I have spent less time reviewing as I needed to prior. Surprisingly I have done just as well when only memorizing things in a shorter period of time (something I used to be good at...AKA - cramming).

Still though, I need to do little mental exercises to remind myself of things such as setting a video tape at the top of the stairs in my walking path so I remember to grab my class video tape downstairs. It helps to write notes to myself, utilize lists on paper, chalkboard and whiteboard, and to assemble or think about things I need the night before or at least put it all in the same spot.

Bad trends - I have been eating sugar (chocolate). I don't go nuts but I have had some everyday which is not what I should really be doing. The refined sugar is just too risky and not good for someone like me. Sugar has not only been found to feed tumors but it also tightens the muscles. Sugar consumption plus my lack of stretching and walking everyday most likely contributed to the leg cramps. I am still taking Diamox but consume potassium foods everyday and supplements on occasion.

Aside from consuming chocolate things, I have been really good about the caffeine. Once in a while I treat myself to a low sugar chai tea and if I absolutely need it, on rare occasion I have white tea which is one of the rarest and best forms of tea due to having the highest content of antioxidants of all the teas. I think the last time I had a diet pop was a can of caffeine free pepsi last mothers day at a bbq.

A Good Dream Gone Sour - Lessons in Communication or a different interpretation?

I had a wonderful dream. I was diving with a group of people in a fantastic tropical underwater paradise. On land were majestic snow covered mountains. The scene was perfect and picturesque. The water was the bluest I had ever seen and the hues of the tropical fish were amazingly stunning. Visibility underwater and on land was grand. It was never ending and my perception went beyond what my eye could reach. Everything seemed perfect.

Then, one of our party ran too low on air forcing us to cut the dive short and surface. No problem I thought. Afterall, the water was shallow and conditions absolutely divine. I recall the group surfacing to look for the shortest route to shore. Even though the water was shallow and absolutely clear, the nearest shore was quite a distance away. At the time I did not think about how we had completely gotten off track. We were all still mesmorized by the beauty of our surroundings and in a jovial or childlike mood. The world and setting was our oyster.

We took a compass heading for the nearest exit (safe shore or in other words sandy beach). When we arove we did not want to leave the water and continued to snorkel and marvel at the mysterious and colorful species down below. One person who was particularly adept at underwater skill at one point became a tropical fish to mimic the behavior of a beautiful and amazing new species we found frolicking among the shallow coral.

Finally the sun started setting and we decided it was time to head back to our entry point. With all my gear on we headed up this steep hill on to the trail. At the top was a phenonmenal panoramic view of glorious snow capped mountains! I remember thinking "how could life get any better ?" (warm tropical clear water to dive in and fantastic scenery up above of high altitude snow covered mountains to goggle at). I was not exactly sure where we were but the place was amazing......a place that could only be found in dreams.

When everyone else gathered onto the trail the decision was to go right as that was the trail which hugged the shoreline. The other trail descended down into the valley on toward the mountains. In addition, an athletically built young man was carrying a scuba tank in a sling over his shoulder and heading from the direction everyone wanted to travel.

I followed without questioning as I was still captured by the spell the island had over me. The trail was perfect too....crushed gravel with no big ruts so it was easy for me to walk on. As I walked I was amazed to have no problems with my balance given the extra load of gear I carried on my back. I reasoned that the load was much lighter than cold water gear and the trail was perfect. Therefore I was not having difficulty.

We passed a plethora of historic and interesting ruins as well as fantastic beaches. Still in my bewilderment, I recall thinking how my parents would really enjoy vacationing there and deserved a break to soak in the pleasureful delights of my new found land.

As the sun was definitely setting now, it occured to me that we had been hiking for a while in all our scuba gear and still had not reached our entry point. It did not seem like we were in the water than long and we were now very far from where we exited. It was apparent we were lost or went the wrong way!

As we were literally at a crossroads of trails, the group pondered what to do. Which way to go? Not too far away there was a ranger's office and a couple people had spotted it, pointed, and started heading that way.

When we arove and met with one of the rangers through the office window, I noticed her shake her head and refer or point to the other side of the island. I am not sure but it appeared that we had ventured far from where we intended to be. However, I had noticed the trail ahead, some pictures on some signs, and a map on the side of the building.

I recall passing a pool at the facility where our entry point was. Up ahead on the trail I saw a picture indicating the same place. It was a closer route than going all the way back and through the moutain route. We did not have enough air to go the straight shot underwater.

When I tried to tell everyone my points it was as if they did not hear me. It was like I was no longer there. I was very frustrated as reality finally settled in. We had no food or water, we were wearing our scuba gear, and darkness was approaching fast. Now back in the land of my real world, I contemplated my personal challenges a) I have balance difficulty and I was carrying a load of gear on my back. We had already hiked quite a ways and I would be too exhausted to go back through a longer route. b) As soon as it turned to dusk and night, my balance would be totally shot making the journey even more diffucult and not to mention very slow.

I began to feel left out of the loop as when I voiced my concerns nobody seemed to listen. It appeared to me that everyone felt things were fine and I was just along for the ride. A major decision which could depend on our survival was being made and my input was not considered. It was as if I were in a magic bubble hovering over everyone. I could see what they were doing but I was completely forgotten about.

For me, I desperately needed to know the plan and to see a map. It is kind of fuzzy in my memory but had I been noticed, I get the feeling that people just kind of brushed me off and told me that I would be fine. In their world maybe they would be fine but in my world not as I had special challenges to consider!

Anxiety ridden now and not knowing what was happening and not wanting to walk in the dark donning my gear, as a last moment of deperation I ran to the picture of the trail map I saw on the outside of the building around the corner from the ranger window. Oddly enough, I was noticed or thought I was by two people. I pleaded with them to please get a map for me. I waited a long time and they never came back. When I went to investigate, nearly everyone was gone. They left me! They forgot I was there! I am not quite sure as I began to become lodged between waking and dreaming at this point, but I don't know if the one person I thought was left knew I was there. I think the person was speaking further to the ranger. I was in such a horrified state of shock of being left behind that I awoke at that point.

Poem - The Battered Dream Ship by Edgar Guest
Oh, once I sent a ship to sea, and Hope was on her bow, But Time has brought her back to me and Wisdom's painted now; Yes, Time has brought me many things and some of them were good. And some of them were failure's stings I little understood.When Hope set forth the dream was fair, the sea was calm and blue, I knew men met with storms out there and had to ride them through; But still I dreamed my ship would ride and weather every blow, For Hope flings many a truth aside which Wisdom comes to know. The storms have come with bitter cold, I've prayed unto the Lord, I've had false cargoes in the hold and thrown them overboard; I've trimmed my sails to meet the gale, I've cut my journey short; With battered hulk and battered sail at last I've come to port. 'Tis not enough to hope and dream, for storms will surely rise, However smooth the sea may seem, 'tis there disaster lies; And I have learned from time and stress, that those who ride the wave, And come at last to happiness must suffer and be brave.

One year already!

Wow! As of yesterday (February the 15th), it has been one year since I started this blog!

Looking back and reflecting, it is hard to believe all that I have been through in the last year and a half. I definitely had some low points and questioned whether or not I was going to make it through. Well here I am. I may be somewhat battered but I am still here and I am still sailing.

In honor of the occasion, I am going to repost the poem I posted at the beginning of this blog a year ago which has become my philosophy and one of the underlying themes behind the title of my blog.

Thanks to everyone who has joined me on the odyssey, have been reading, who have been understanding, who have been supportive and just there for me in general. I feel truly blessed to have you along with me on this journey. Although my posts are far between at times, the odyssey will continue and I hope that you will keep sailing with me. God bless!

Love and my sincere appreciation, Beck (AKA: Rebecca :o) )

First Day of School

From left: Diana, Laura, Me, and Melody.We are posing outside of the SCCC cafeteria on January 3rd (our first day of class which is for an hour every morning). Missing in action but present in class: Alison (our meetup organizer) and Lindsey (the Bellevue Community College ASL club 'Silent Voices' president).
Photo provided by Diana Rodgers. Photographer - some student from class

Here are 4 of us out of the 6 in our ASL meetup group. We are pictured at Seattle Central Community College and are taking ASL 202 which is level 5. We all went to Bellevue Community College at some point and then transfered to SCCC because it is the only public college in the Seattle area which offers ASL 4, 5, and 6.

I met Melody in the spring of 2004 when I took a refresher course of ASL level 1 at the HSDC (Hearing Speech and Deafness Center) with Harley, KC & Dianne (now married), Lisa (one of my captioners from the UW), and Nicole (a former classmate and cohort of the master in teaching program at the UW). Our teacher at the HSDC was my friend Karen Chreist (now Stueland compliments of "Sam the man").

I knew Lindsey from attending some BCC Silent Voices ASL events (primarily the 3rd friday of the month coffee social in Bellevue). Back in February (yes nearly a year ago already!), I ran into Melody again and was surprised to learn that she lived very close to us. At that time I met Laura who was a friend of hers and was also at the coffee night. I told them about the cool meetup group I had found on the computer. I think they knew about it and happened to go before I went. LOL

And that brings us to how I met Alsion and Diana. I first met Alison over the computer when looking for ASL events in my area. ASL is just one of the many languages Alsion knows. Diana (now our assistant organizer), I met when I actually started going to the meetups (thanks to Melody and Laura who gave me rides when I could not drive much due to vision problems associated with the tumors causing my optic nerves to swell).

So that is our story and here we are. LOL Thanks to these wonderful friends I have people to communicate with and help me learn ASL. Among us there are three carpools to and from school so I don't have to drive to downtown Seattle. THANK YOU EVERYONE! :o)

Class keeps us busy, it is challening, and there is lots of homework. However, we truly enjoy our instructor Stephan Kennedy and we are having fun being in class together and seeing each other everyday.

Oh yeah, we all live on the east side (Melody and Laura in Redmond, Diana in Woodinville, Alison and Lindsey in north Bellevue near Microsoft). I am so fortunate!!!! The majority of the Deaf community lives in Seattle which is far from my home. It is nice having a group to sign with on the east side and to go to events with together. They are all hearing but we do have a couple deaf friends who sometimes join us at gatherings (George, Frank, and Paul).

The Letter - Keep the Faith

Please note that the author of this artwork is unknown. I have included the image as it has been circulating around the net.
The following is an email letter I wrote to my husband Harley yesterday evening. He enjoyed it so much that he suggested I share it with you all on my blog.

All day yesterday I felt overwhelmed, in a state of melancholy, and wondered what the future will hold for me. I would say that I did try to put on a smile but inside I was full of questions. At school I was saddened to see other people freely run down the stairs while I struggled and grasped the handrail firmly with each step. I wondered how long I would be able to walk, how long I would live, or if I would ever find a place in the world where I fit in, communicate and could contribute to my full potential.

The same emotional numbness carried with me when I returned home. I noticed another bruise on my body (the elbow this time) as it felt sore but I vaguely had recollection of how I received it. I thought about the couple times I slipped trying to hurry down the stairs in our house or nonchalantly gallop down them like I used to. With less padding to protect myself I now get large bumps and bruises on my keister. I wondered how long my body can take this without breaking something (afterall I am only 34!). It saddened me to think that a day may come that I could no longer use stairs and would have to move from the beautiful refuge of the home I love.

Before leaving for my walk with the dogs, I checked my email to discover the photo you see above. Seeing as it was a forward, I almost deleted without opening it. For some reason I did open the email and I was so immensely captivated by the picture that I saved it in my computer files. The image comforted me . I thought of the many times I have sat in the same serene pose while pondering life and talking to God. The letter below will fill in the rest:

"Today it stopped raining after I went to the post office and the sun started to come out. Our walk was fantastic! The field in the first part of the trail was very green and reminded me of when we drove past all the vineyards in Italy when it was slightly raining. As we walked the sun peered out more and it was so beautiful. It was slightly sprinkling but the colors of everything were amazing! The water in the creek is very high and you can no longer see the beaver dam. It was rushing really fast and the sun was pouring through the clouds. When we were to the field across from the pond I looked west and the sun was shining brightly in full grandeur. It was still raining and I could see the drops glistening in the sun. I thought to myself that surely there must be a rainbow somewhere. I looked over my right shoulder to the east and noticed the black silhouette of a bird soaring high overhead. As I gazed at the bird, I spotted an entire rainbow beginning to brilliantly splash out in the sky beyond. As my view came into focus, as if looking at a picture of an optical illusion, I noticed a second rainbow faintly making its appearance.

I wanted to walk the whole length of the pond in the sun with the hope that we would see the elegant great blue heron who frequents a spot camouflaged by the cattails in the shore along the road. As we reached the half way point, there he was standing triumphantly on a log in the center of the pond. He was magnificent and it was if he was awaiting our arrival so that we would see him. We stopped for a few seconds and he gracefully raised his majestic blue wings and rose into the air only high enough to come to rest at his usual spot.

We continued to the sign just past the entire distance of the pond before turning around. On the way back we enjoyed the remainder of the rainbow, the heron on his perch, and some wood ducks gently gliding along the mirrored surface of the water. At one point we stopped 3/4 of the way back to admire the glorious panoramic of white tufted clouds jutting out from the pale yellow sunset and baby blue sky beyond. Just gazing at the sky reminded me of one of my wide angle photographs I shot while attempting my highest climb on Mt. Rainier with my sister in 2003.

I have to tell you that before my walk I was in a sour mood because as soon as I got ready a big cloud moved overhead and it started to rain. I questioned why God would allow this to happen and if I should have gone to the flooded dog park in Redmond. But I had to pick up the mail at the post office in Carnation. For some reason God allowed me to wake up from my nap at just that time and go for a walk.

I pondered this and thought there must be a reason he is guiding me out here but I do not know why. I thought perhaps there would be a rainbow after I turn the corner before the Nestle farm. But alas there was none and only rain. I searched for a reason that I would be guided out there. I thought maybe I am going to run into somebody important at the post office. I was very saddened thinking of many things. In fact I was in a melancholy since yesterday evening and was starting to feel sorry for myself again.

Then as I exited the post office the rain started the lighten up. The sun was fighting to peer through the gloom. As we started our walk, a feeling of comfort overcame me as everything seemed fresh and renewed. I could feel the birth of spring starting and my spirits lifting. As I took each step, I recalled how long it has been since I took the dogs for a walk or that we have walked on that section of the trail. It felt good to be with them and they were overjoyed to go for this walk rain or shine. With each step we took the sun came out more and more as if it were a sign of things to come.

A strange thing occurred before I went for my walk. Somebody had sent me a forward which I was going to delete without opening it. Then out of curiosity or just happenstance, I decided to open it. Of course there was some message to forward on to people or whatever. I did not see those words. Instead it was the image in the email that caught my eye and the caption underneath it. The title of the image was "Be Still and Know".

Here is the message underneath:
God still sits on the throne.
Each and every one of us are going through tough times right now but God is getting ready to bless you in a way that only He can. Keep the faith."

The Garden of Light

"The Pond" My favorite light display at the Garden d'Lights in Belluvue, WA this year.
Photo by Pat De Grand
For more of Pat's photos please visit our photo album at the following link: http://pg.photos.yahoo.com/ph/bluediverbeck/slideshow?.dir=/ef6a&.src=ph

Click the post title above to see the website of the Bellevue Botanical Garden and see their photo gallery of the lights from this year and previous years.

Nutcracker March Dec 26th

Becky and "From Russia with Love" nutcracker

Harley and Becky with the "Penguin King" nutcracker

These images were taken by my father Pat De Grand. To see more photos please view our yahoo photo album at the following link: http://pg.photos.yahoo.com/ph/bluediverbeck/slideshow?.dir=/7814&.src=ph
To view the actual website and to see all 50 nutcrackers click on the title of this post. There is a map on the site which shows where each nutcracker was placed. Like a scavengar hunt, we used the map to find as many nutcrackers as we could during our limited 2 hours parking alottment. We focused our search around Seatte's main shopping hub and holiday festivities in the Westlake Center. There we found Macy's all decked out with a huge star hung on the side of the building, a carousel, a gigantic Christmas tree with lights, horse drawn carriages, lights galore and much more! It was absolutely beautiful!

The life size nutcrackers were painted by Seattle artists and sold in a silent auction. The fundraiser benefited the NW Center which serves disabled children and adults. The event itself was sponsored by the Pacific NW Ballet.

On a side note.....a little bit about me you may not have known. When I was a very young girl I dreamed of being a ballerina. I have always loved ballet and was in ballet and dance lessons when I was 8. Unfortunately I was so shy that when my friend decided not to take dance the following year I was too afraid to take it by myself.

I have seen the nutcracker ballet in Seattle back in 1998 (before I began to lose my hearing or knew about NF2). Funny thing is when we went out for some food after the show I was asked by the restaurant to be in a tv commercial. Hehe. All I did was stand there and pretend to be very enthralled and cheering on this guy (who I think was the owner or marketing person) playing a pin ball machine. I never did see the commercial.

I absolutely LOVE the music of the Nutcracker Ballet. In fact I actually had the CD and played "Dance of the Sugar Fairies" when our bridesmaids and groomsmen marched down the isle of our wedding. We also played the rest of the CD as interlude music before the wedding started.

Try This On For Size

Getting into my suit is kind of a challenge. Before, it fit a little too snuggly as I was about 10 or 15 pounds over the custom made dimensions of my suit. Now I am a smaller size than the measurements I had made back in 1996. Thus my undergarment is kind of huge and keeps bunching up in the legs when I try to pull the shell over it. My balance is also kind of shot so I have to sit down. I tried this several times until I discovered I had to put a pair of socks on OVER the strap at the feet (the strap kept falling off my foot and traveling up my calves with the rest of the undergarment). Ahh! Success finally!

Happy New Year!

A day or so before the new year we decided to try on our drysuits to see how they fit (too tight, too lose, or just right). We had so much fun that we decided to take pictures! (By the way, drysuits are what we wear while scuba diving to keep us dry and warm.)

I hope to get back into the water again within the next month or two. I am at the phase of reorienting myself to my equipment. I have not been diving since March or April of 2004 but was given the ok to do so after my last MRI and visit with the opthamalogist. So basically I am starting over fresh (a new diver with an old diver's knowledge). This time I hope to keep better record of my dives. If all goes well I have plans to submit my logs to DAN (Diver's Alert Network).

Harley has a trip planned to dive on some shipwrecks in Nanaimo, Canada in February. He spent today cleaning and maintaining all of our underwater photo equipment. I am not sure if I will get back into underwater video just yet. For now, I am just going to concentrate on my skills and handling myself in the water. How exciting! I hope all goes well as this is diving (scuba) is one of my greatest passions.

Day after Christmas Breakfast

Yeah I am not looking at the camera. I woke up and cooked breakfast. Thus I was not quite prepared for a Kodak moment.

We had blackberry wheat pancakes, sausage, mango lassis, and fresh mango and orange slices.

We had to have a hearty breakfast because our mission for the rest of the day was to tramp around downtown Seattle looking for the lifesize painted nutcrackers and the Garden D'lights display at the Bellevue Botanical Garden.

My dad took some fantastic photos which I am going to attempt to put in a yahoo photo album so you can just click a link in my blog and see them all.

Merry Christmas from us at the cabin!

Christmas Dinner 2005

My parents came to our house on Christmas evening for dinner as Harley worked during the day shift. We celebrated a seafood Christmas dinner of king crab and a new recipe I cooked: scallops sauted in cognac and chardonnay over linguini. The spirits we shared was a special bottle of white table wine we acquired while visiting the Baywood Cellars winery in Monterey, California after my last treatment at Stanford University Medical Center in July of 2004. (www.baywood-cellars.com)

I never quite realized it until this moment but the title of the wine we bought is called "Symphony". It was while I was in Monterey that I realized my days of hearing had passed. What an irony, eh? I knew at the time the wine was called symphony for the blend of Grenache Gris and Muscat of Alexandria they crossbred together to produce the delightful flavor of a dry wine with a touch of sweetness. However, at the time the shock of deafness clouded any connection the name of the wine made to my life.

We had a wonderful evening. Dinner was marvelous and we completed the night by cozying down and watching the new version of the classic movie "A Christmas Carol" starring Patrick Stewart (Captain Pickard from Star Trek The Next Generation). If you have not seen the film yet I would highly recommend it! I have always been a fan of Patrick Stewart and he provides a fantastic performance. In fact, this newest version of a Christmas Carol is now my favorite.

Hope you all had a nice evening and peaceful holiday!

Holy Mammoth!

Okay one more and I am way overdo to get some sleep! Cripes! Harley will be waking up in a few minutes and wonder why I am up!

Again this is at the WONDERFUL dinosaur museum in Mesa, Arizona. This place totally rocked!

I am posing underneath a giant mammoth at the museum entrance.

Okay, here is the real me!

Here I am next to some fantastic photograph of Arizona somewhere that was in a magazine. The shot is from the good side of my face as the other side is still a little crooked.

Picture was taken by Harley at the Mesa SW Arizona Museum in October of 2005.

My Face Now

Yikes! I turned into a t-rex! LOL Just kidding.

Having a little fun in the gift shop of the SW Arizona Dino museum in Mesa on our trip to Arizona in October.

People With Brain Tumors Are Beautiful Too

This is Harley's creation during our pumpkin carving. If you look deeply it is a rather happy pumpkin. Try this: take a sheet of paper and cover up the left side of the pumpkin face. See! Our pumpkin is smiling!

Harley worked hard and took great care in this design. The image illustrates what often happens to those inflicted with brain tumors such as NF2 or AN. The paralysis does not allow the face to move in the positions that it naturally did prior.

For this reason people may mistake the person for being grumpy or seeming unhappy. For those with NF2 and extremely large AN tumors, the loss of expression can be a very difficult communication barrier. First, sign language relies HEAVILY on the use of eye contact and facial expression. Without full freedom of movement of the facial muscles, it can be very difficult to discern if one is asking a question or making a statement.

Some people have facial paralysis on both sides of the face as NF2 is characterized by bilateral vestibular schwannomas (often referred to as AN for acoustic neuroma). What this means is that tumors grow on both side of the brain and can affect the facial nerve on both sides depending upon the size or shape of the tumor, and possible damage from either surgery or radiation.

In addition to becoming a communication barrier, facial weakness/paralysis makes simple tasks such as eating and drinking very challenging. Often those with facial paralysis chew on one side of the mouth and drink only through straws such as I have done for a year now. I still chew on one side of my mouth and it takes a very long time to make it through a dinner. Gone are the days of eating on the run (unless it is a cheese stick) or stopping for a "quick" bite to eat.

If you will also notice, there is weakness in the pumpkin's eye lid. This is VERY common. Those of us often become a drug warehouse or eye pharmacy. Since October of 2004 I have lost the ability to produce tears and need to use artificial tears during the day and gel drops at night. The gel drops help to paste the eye lids closed because the lid on the weak side cannot create a functioning seal and thus the eye dries out during the night. Failure the keep the eye lubricated can result in blindness. Many people actually "tape" their eye shut and it might be something I will have to start doing as my eye is sore and red when I wake up in the morning.

As you have read, facial paralysis is not simply a matter of looking "GQ" or "COSMO". The condition presents serious hurdles to overcome and life adaptations to be made. So the next time you see someone with facial paralysis think about everything I have mentioned and how beautiful that person is for their strength and perserverance.

Christmas 2004 - The Facial Freeze

This photo is from a year ago when we celebrated Christmas at my brother and his wife's apartment outside of Portland, Oregon. On December 14, 2004 (exactly 6 months post treatment) my face became paralyzed on one side. This is actually a really good picture and the reason it looks as if I am barely smiling.

I have to admit I was pretty horrified and pretty depressed last year. Just when I was expecting to get better I became struck with facial paralysis, I was having vision problems, and my balance was beginning to become a challenge. On top of that I was feeling sick and getting headaches. The whole ride down to Oregon I could not sleep and it felt like my head was in a blender every bump we hit on the freeway.

At first we thought that I had what is known as "facial palsy" and that it could possibly be remedied with steroids. Because it was the holidays I went 7 days without meds and started the steroids AGAIN the monday we left.

When I saw a neurosurgeon in January 2005 he corrected us that what I experienced was actually facial paralysis which is common for people with brain tumors. The paralysis is either caused by damage to the facial nerve from the tumor, surgery, or radiation. Because I did not have surgery the damage was from the tumor swelling or radiation. At that point we could not tell which or if the damage was permanent.

With "facial palsy" the facial and muscular weakness is caused by either a bacterial or viral infection. That is why there is a high incidence of response to steroid treatment over time.

In my case the steroids only seemed to help my balance a little. Thus I had to wait it out patiently for the facial nerve to regenerate (which there is no guarantee) and hopefully for the tumor to stop swelling, die, and possibly shrink relieving some pressure.

Well after 11 months it stopped swelling and on my past two scans the tumor has shown cell death. Now we are just waiting and hoping the dang thing will shrink a little (and hopefully give me back some balance).

My smile is not a 100% now but it has greatly improved allowing me to drink out of a normal glass without using a straw (after a year of only drinking through straws).

I have some indentations in my face now from: a) my face shrinking from not taking steroids since April, b) my body also shrank quite a bit and c) lack of use of certain muscles that had been paralyzed for a year.

It has taken me a long time to allow myself to be photographed or to show pictures of myself. I do have some extreme photos that I took the evening of onset but they are not on my computer. I will post them (probably in a yahoo photo album) once they have been uploaded from Harley's computer. To see another photo which better illustrates what the facial weakness appear like, please click the link in the title of my post which will bring you to the website and photo of our ASL meetup group.