If you have been reading you know my difficulty with running. Last spring I found out that I was improving my balance to the point that I could run at least 3 miles. One day I decided to run longer than that which worked out until my drive home where I got such a bad migrane and pain behind my eyes that I vomited something black (which doctors determined might have been dried blood from the nose bleeds I was having).
As it turns out my optic nerves were swelling again and I had to go back on medication. My one doctor told me that the running might be causing too much pressure to build up in my brain. Okay but I was determined to run my 3 miles in the Relay for Life (to which I collapsed for a short bit afterward.....tell ya later).
In June I fell on my tailbone and bruised it very badly. It has taken this long for it to heal so I have not been able to run at all. Then I began to experiment at Saturday practice over a week ago. I wanted to do 2 laps around the park and it seemed like many people were running around me. Therefore I sort of jogged in little spurts (for only about 10 minutes) but it made me dizzy.
On friday night (not sure exactly) Harley and I took the dogs walking but it was an hour before sunset and the squeeters were out. Thus we had no choice but to run on the way back. I just kept running and reached the open field before I thought I would (we had to run past the stagnant ponds and the creek which are prime breeding grounds for the beasts). I think I ran for about 18 minutes and then I walked.
Yesterday however, I did not have the dogs with me so I decided to try to go for a half hour run. I ran for about 32 minutes and walked the rest to make it an hour. Fortunately the weather has cooled a little and there was a slight breeze. I did not seem to have pain but the coordination for running was challenging. Yet I was able to run for 30 minutes which I have not been able to do for over a month!
Here is a link which explains one of the reasons I cannot run too far and why at certain times I have difficulty with night driving. The best way to describe my life in motion (walking, running, riding on a bumpy road) is like constantly viewing life through a home video camera while in movement. Sometimes (depending on what shoes I am wearing and the terrain) life is like living without shock absorbers (like riding in a car with no shocks). I first noticed this maybe a year or more ago while walking down to the mailbox. I could feel every little bump and pounding of my foot on the gravel drive. It was as if I lost any sense of shocks on my body and the vibration resonated through my spine shaking my skull and eyes.
http://www.tchain.com/otoneurology/disorders/bilat/bilat.html
I have learned to get used to this but yes it is very tiring at times. It takes a GREAT deal of energy and concentration to adapt and get through it.
Thursday, July 27, 2006
Swimming Lessons
LOL Yes I am like a kid again starting over. I am taking swimming lessons and even with being deaf these are the best swimming lessons I ever had in my life. I waited a year to get into the class as they fill up fast and I was not quick enough to sign up (there is actually a waiting list). The classes are offered through Team Survivor Northwest which is a fitness program for women cancer survivors and patients. The mission is to keep women in a healthy life style and get them active again.
My classes are every Sunday at the Mercer Island pool and I greatly look forward to learning more from our excellent coach "Ed". There are two pools a) an olympic size lap pool and b) a shallower pool which is half the size. Those who are advanced swimmers practice laps in the olympic size pool. Most if not all of those women are training for the Danskin Triathalon in August with coach Mary of Mary Myer Fitness. The rest of us are in the beginner class and we are taught by Ed who if I understand correctly has been a collegiate swim coach. He is awesome! If you did not know better you would think he was born in the water and was a "merman".
Now some of you who have known me a long time might be sort of confused (especially if you grew up with me or know my history with the water). I have always been a water child and would have been happy had I evolved a set of gills. My favorite memory of the water while growing up is jumping off the ford river bridge in the icy ford river in early summer/late spring and also playing the rock race game at "Dut's" swimming hole. What is the rock racing game you wonder? LOL Well being a rural country bumpkin we were good at using nature to create things to do. We used to find a heavy rock (not too heavy but just enough to keep you at the bottom of the river) and race across the river bottom. Yes sometimes the depth must have been 3 to 4 feet over our heads! We would hold the rocks and scurry across the bottom of the river holding our breath to see who was the fastest. What a blast!
In college I took an aquatics swimming class (to meet one of my PE requirements) and then went on to take Lifeguard training, PADI basic open water (scuba) certification, PADI advanced open water certification, PADI rescue diver certification and specialties through SSI in night diving and low visibility. In addition, to get some more dive time under my belt, I volunteered as an assistant for the diving organizations PADI, IDEA, and NAUI.
So why the heck I am in the beginner class? The tumors destroyed a great deal of my vestibular function. I was absolutely shocked on the third day of treatment to almost drown in 4 feet of water at the hotel pool. I loved just playing around in the water and decided to close my eyes in the chlorine water and do a summersault. Well the summersault never happened and with my eyes shut I could not stand up nor find the surface. Desperate for air I had to finally open my eyes to determine why I could not find the surface in such shallow water. I was alone but thanks to my history with the water I was able to stop panic and think my way out of the situation.
I have tested it out in a pool over the past year. If I close my eyes I cannot complete one full summersault rotation but with a mask I can do 6 perfect summersaults in a row on one breath. The class is to learn the proper technique of swimming I never learned in order to be confident with my skills in the water. When I see water I still long to jump in but the incident brought forth some aprehension that I am working to overcome through greater confidence in my ability.
I love the water and I am not willing to give it up so easily! That is one thing I have learned about NF2. I have experienced many unexpected changes but with learning the right adaptations I can continue to have an active lifestyle.
My classes are every Sunday at the Mercer Island pool and I greatly look forward to learning more from our excellent coach "Ed". There are two pools a) an olympic size lap pool and b) a shallower pool which is half the size. Those who are advanced swimmers practice laps in the olympic size pool. Most if not all of those women are training for the Danskin Triathalon in August with coach Mary of Mary Myer Fitness. The rest of us are in the beginner class and we are taught by Ed who if I understand correctly has been a collegiate swim coach. He is awesome! If you did not know better you would think he was born in the water and was a "merman".
Now some of you who have known me a long time might be sort of confused (especially if you grew up with me or know my history with the water). I have always been a water child and would have been happy had I evolved a set of gills. My favorite memory of the water while growing up is jumping off the ford river bridge in the icy ford river in early summer/late spring and also playing the rock race game at "Dut's" swimming hole. What is the rock racing game you wonder? LOL Well being a rural country bumpkin we were good at using nature to create things to do. We used to find a heavy rock (not too heavy but just enough to keep you at the bottom of the river) and race across the river bottom. Yes sometimes the depth must have been 3 to 4 feet over our heads! We would hold the rocks and scurry across the bottom of the river holding our breath to see who was the fastest. What a blast!
In college I took an aquatics swimming class (to meet one of my PE requirements) and then went on to take Lifeguard training, PADI basic open water (scuba) certification, PADI advanced open water certification, PADI rescue diver certification and specialties through SSI in night diving and low visibility. In addition, to get some more dive time under my belt, I volunteered as an assistant for the diving organizations PADI, IDEA, and NAUI.
So why the heck I am in the beginner class? The tumors destroyed a great deal of my vestibular function. I was absolutely shocked on the third day of treatment to almost drown in 4 feet of water at the hotel pool. I loved just playing around in the water and decided to close my eyes in the chlorine water and do a summersault. Well the summersault never happened and with my eyes shut I could not stand up nor find the surface. Desperate for air I had to finally open my eyes to determine why I could not find the surface in such shallow water. I was alone but thanks to my history with the water I was able to stop panic and think my way out of the situation.
I have tested it out in a pool over the past year. If I close my eyes I cannot complete one full summersault rotation but with a mask I can do 6 perfect summersaults in a row on one breath. The class is to learn the proper technique of swimming I never learned in order to be confident with my skills in the water. When I see water I still long to jump in but the incident brought forth some aprehension that I am working to overcome through greater confidence in my ability.
I love the water and I am not willing to give it up so easily! That is one thing I have learned about NF2. I have experienced many unexpected changes but with learning the right adaptations I can continue to have an active lifestyle.
Sunday, July 23, 2006
OUCH! (like the way ET said it)
Photo taken by Harley Dufek in Ochos Rios, Jamaica on June 27, 2006 aboard the "Sinara" Trimaran.
Check out that right knee (the one closest to you in the picture). Actually it does not look too serious of an infliction in the photo but it ended up being pretty bad.
Seeing as our mission was to snorkel the whole time ashore in our first port of call in Labadee Haiti, I did not bring my walking stick with me. For one I did not want anyone to steal it while I was in the water, and secondly I did not imagine I would need it.
After an hour or more of snorkeling we decided we better take advantage of the free lunch provided at the island bbq as it would be awhile until dinner. In our hurry to be the last ones to grab some food before they shut it down, I tripped walking over the lumpy yet hard sand dirt road. Unfortunately the sand was rather abrasive due to its makeup of fine coral particles. Therefore it left my knee an awfully bloody mess.
What was even worse is that this happened in front of duck boat (busload) of people. Being on vacation I am sure they thought I was some fleusy who had a little too much rum! LOL I arrived at the bbq with blood dripping down my leg and had to get a cold glass of ice water and a napkin to clean it up (the ice water is safe in that spot as the area is owned by the ship and all the food and water is provided by the ship).
When I fell I did not imagine it would be such a nasty wound. Each time I went snorkeling it got worse and a big ugly scab formed with a rash around it when I returned home. It is gone now but a definite pink scar the size of a quarter is in its place to match all the bruises on my body.
Falling injuries are quite common on a daily basis but often I forget about them unless they are more serious such as when I fell on my tailbone down the stairs and falling on something abrasive such as coral sand. Bruises will show up on my body that I cannot account for as I get used to bumping into objects and falling as a normal part of life now.
My lastest falls (close calls) yet not as serious include: falling like a tree on top of our luggage behind the antique wood frame couch in our hotel room (I bruised and scraped my armpit area), slipping down the stairs again last Sunday trying to hurry to my swimming class (fortunately I did not reinjure in tailbone but formed a large bruise and scrape on my forearm), falling yesterday on a pile of tools (including some kind of small router saw that was fortunately turned the opposite direction) in the spare bedroom filled with things we have no place for, and today I did something on the stairs that hurt momentarily. I know I will have a bruise on my shin as I whacked it hard going up the stairs. The rest of the details and my other bruise incidents have left my memory.
ILY Snorkeling - (a sneak peak)
Photo taken by Harley Dufek on June 26, 2006 in Labadee, Haiti.ILY- means "I Love You" in ASL.
Here is a sneak peak at my very first reintroduction swim in the ocean since the first day of my treatment in July 2004 when I went boogie boarding off Santa Cruz beach. The photo was taken in the waters off of Labadee, Haiti which was our ship's first port of call.
Although I needed assistance in and out of the water, I was thrilled to be able to snorkel and finally return to the underwater world which I love so much.
In the caribbean it is the law that you have a snorkeling vest so that is the black thing draped around my neck. I did not mind as I was able to float along over everything without having to worry about swimming. It was difficult at first to remember that I was not diving. The vest sort of gave me the feeling of a scuba BCD so every now and then I would forget and put my whole head under the water while still breathing on the snorkel. Hehe...nasty awaking swallowing that salty water!
I have not realeased the photos yet (I will soon) but I did suffer a significant facial paralysis for more than a year. At the worst point, I could not move half my face and I was concerned back then (not only of looks) but of whether I would be able to breath off a snorkel or regulator. For a long time I did not want anyone taking pictures of me and I did not want to show anyone photos of me. Thus the long absence of photography on the blog for a period of time.
Fortunately I have regained most of my face back (there is still some facial paralysis which you will notice in pictures of me.....most notably the framed formal anniversary photo I posted). However, I have gained enough function back now to breath on a snorkel with ease. I can even sip on my hydropack now (I am pictured wearing it in the Mayan Ruins photo of us) without having to hold my lips shut. We will see how it works with a scuba regulator when I am ready to try it out.
If all else fails, the snorkeling worked out great for me (with the exception of getting out of the water on shore.....I cannot stand up in water at my knee level or below!). We snorkeled for I think 2 1/2 to 3 hours in Haiti and then went from a boat in Jamaica and Grand Cayman which was nearly not long enough.
Saturday, July 22, 2006
An addition to the link of the last post "Baffled"
In the last post I included a link which brought you to a page titled "How deaf people hear".
Unlike most deaf people, I and many others with NF2 hear nothing at all. Our world is completely silent except for the occasional tinnitus (ringing in the ears....noise in the head) that visits us.
Therefore, I would like to inform you how I have adapted or how to get my attention.
Waking up:
I would not even wake up if a bomb exploded outside my house (unless I felt the vibration which would have to be rather intense). Therefore I have a special alarm clock called a "bed shaker". LOL No it is not the same as those coin operated beds you see at cheap motels in the movies. A flying saucer shaped device plugs into my special clock. I put the saucer under my pillow and it vibrates the heck out of my skull when it is time to get up!
Phone:
I don't answer it because I cannot distinguish between a call for me over relay or a call for Harley. If it is for Harley and I answer it there is no typing to read on my phone and it is a dead end for me. I DO have a light flasher Harley installed to the ceiling of my computer armour. When the phone rings this light blinks and and off. If the call is for me and someone has called over WA Relay for the Deaf, an operator will type a message for me that I will read on a small screen on my phone. This special phone is mounted next to my computer and if I am at the computer I can call the person back right away.
Door:
It used to be that the dogs alerted me by barking but I can no longer here that. Since we live rurally we do not get many visitors so I do not have a light flasher for the door. I usually know when someone is coming by and I can watch for them. My computer is in the loft overlooking the front door. When Harley comes home, I can feel the vibration of him closing the front door through my feet (If I am in the loft). I don't wear shoes in the house (only barefeet or slippers in the winter). This also works if I drop something bigger than a piece of paper in the house. I can feel the vibration through the floor. Note: While on the boat my stateroom had a door flasher. There was a device or box that had a seperate light for each thing (phone, alarm, door, fire). When the lights would start flashing I would look at the box to determine if someone was at the door, if the phone was ringing, or if there was an emergency.
Getting my attention:
IT IS EXTREMELY IMPORTANT TO TAP MY SHOULDER GENTLY AND NOT TRY TO YANK THE DANG THING OFF! SOMETIMES I MUST FINISH WHAT I AM DOING AT THE IMMEDIATE MOMENT SO IT DOES NOT LEAVE MY MEMORY. If I am in somebody's way at the store I greatly appreciate a polite tap instead of being rammed in the rump with a shopping cart. Yelling and stomping as loud as you can would be futile since I hear nothing. If possible the best method is to flash the lights on and off as long as it is safe (meaning I am sitting down and not trying to walk down stairs or something). Deaf signers are also used to routinely getting each others attention by waving (small motion like you need something if the person is close by). Big waves are fine if there is a great distance between you and the deaf person.
Babies crying:
The ASL GLOSS "Ain't Got None!" Many people would find deafness in this case a blessing as I am NEVER annoyed by ANYONE'S cyring baby or any other loud disturbing sounds. ;)
Unlike most deaf people, I and many others with NF2 hear nothing at all. Our world is completely silent except for the occasional tinnitus (ringing in the ears....noise in the head) that visits us.
Therefore, I would like to inform you how I have adapted or how to get my attention.
Waking up:
I would not even wake up if a bomb exploded outside my house (unless I felt the vibration which would have to be rather intense). Therefore I have a special alarm clock called a "bed shaker". LOL No it is not the same as those coin operated beds you see at cheap motels in the movies. A flying saucer shaped device plugs into my special clock. I put the saucer under my pillow and it vibrates the heck out of my skull when it is time to get up!
Phone:
I don't answer it because I cannot distinguish between a call for me over relay or a call for Harley. If it is for Harley and I answer it there is no typing to read on my phone and it is a dead end for me. I DO have a light flasher Harley installed to the ceiling of my computer armour. When the phone rings this light blinks and and off. If the call is for me and someone has called over WA Relay for the Deaf, an operator will type a message for me that I will read on a small screen on my phone. This special phone is mounted next to my computer and if I am at the computer I can call the person back right away.
Door:
It used to be that the dogs alerted me by barking but I can no longer here that. Since we live rurally we do not get many visitors so I do not have a light flasher for the door. I usually know when someone is coming by and I can watch for them. My computer is in the loft overlooking the front door. When Harley comes home, I can feel the vibration of him closing the front door through my feet (If I am in the loft). I don't wear shoes in the house (only barefeet or slippers in the winter). This also works if I drop something bigger than a piece of paper in the house. I can feel the vibration through the floor. Note: While on the boat my stateroom had a door flasher. There was a device or box that had a seperate light for each thing (phone, alarm, door, fire). When the lights would start flashing I would look at the box to determine if someone was at the door, if the phone was ringing, or if there was an emergency.
Getting my attention:
IT IS EXTREMELY IMPORTANT TO TAP MY SHOULDER GENTLY AND NOT TRY TO YANK THE DANG THING OFF! SOMETIMES I MUST FINISH WHAT I AM DOING AT THE IMMEDIATE MOMENT SO IT DOES NOT LEAVE MY MEMORY. If I am in somebody's way at the store I greatly appreciate a polite tap instead of being rammed in the rump with a shopping cart. Yelling and stomping as loud as you can would be futile since I hear nothing. If possible the best method is to flash the lights on and off as long as it is safe (meaning I am sitting down and not trying to walk down stairs or something). Deaf signers are also used to routinely getting each others attention by waving (small motion like you need something if the person is close by). Big waves are fine if there is a great distance between you and the deaf person.
Babies crying:
The ASL GLOSS "Ain't Got None!" Many people would find deafness in this case a blessing as I am NEVER annoyed by ANYONE'S cyring baby or any other loud disturbing sounds. ;)
Baffled - Can you drive?
Starting this winter/spring I started bringing my dogs in to the pet store to have them washed. For one, we only have cold water outside and I get completely soaked which does not feel too nice when it is 50 degrees or less outside. Yet most importantly, my balance has deteriorated to the point that it is challenging to bathe them and can be dangerous for me if I fall.
Last time I tried to take them upstairs in the shower (winter) did not work out real well. Seeing we only had a working shower faucet that was not the kind you can take off the wall and spray around, I had to lift each dog onto their hind legs to rinse off their belly and chest area. Needless to say I was pretty bruised up the next day (especially my feet from being stepped on).
On Sundays and Mondays is a special deal and they clip the nails and brush their teeth too. I was thinking in the summer I would try to wash them myself outside but they like being washed at the pet store and the dogs never let me brush their teeth anyhow. Thus I determined for the convenience, the included teeth brushing and nail clipping, the time and hassle I save, for my safety, and for such a great price I would continue to take them in and have them bathed.
Back to my bafflement......when I returned to pick them up the ladies communicated to me via paper and pen. I make a habit of bringing writing pads with me when I go places. They are ALWAYS nice to me but clearly I may well be the first deaf client they have had. While one lady was busy grooming (trimming) a small dog, the other girl working there would write to me what she was saying or asking.
The girl wrote to me "Can you drive?". I was not sure if I understood the question correctly. There was a pause in my response which I am sure was awkward for them. During that time I was confused why they would ask me such a question. I thought back in my brain "Did I tell them I have NF2 and that yes I was sick sometimes and I could not drive". No I don't remember telling them that. So then I dug deeper into my memory and recalled that I told them about my balance problem and that is why I took the dogs in to have them washed. But why would that prohibit me from driving? Then I thought that I must be having a really off day and maybe I am stumbling around as if I am drunk! What a horrid thought! I was thinking how in the heck did they think I got the dogs there. Maybe they thought I walked them but I had mentioned when I came in that I was a few minutes late due to all the road construction on Redmond/Fall City road. Gosh I must be stumbling around and they think something is wrong with me!!!!!
In all these scenarios I schemed up in my head, I NEVER thought the question was posed because I am deaf. In the two years I have been deaf and the 4 years prior to that when my hearing digressed and I was HOH (hard of hearing), the question has never been asked.
After my pause and look of confusion I questioned "Yeah. Why wouldn't I be able to drive?" Uncomfortably the other girl translated on paper that the other woman thought I could not drive because of my hearing. Shocked and taken by surprise (I really was not prepared for this kind of question) I defensively retorted "It is not illegal you know!". I have to admit that my protective wall immediately went up and proactivity was on its way out the window.
I imagine that my facial expression exhibited the feeling of being offended. I just was not sure how to react. Perhaps they read my face and questioning look of "WTF?" and so the woman went on to inquire what she meant was how do I hear sirens or know that a cop is behind me. My response was "How is it any different than someone blaring their car stereo and cannot hear the sirens?" I then realized this was an innocent inquiry and not an attack on deafness. Therefore it was my responsibility to educate. I informed them that my world is very visual and while driving everything is visual so we SEE the lights instead of hearing them. I think maybe this bit of information hit home as they informed me it was something they were just wondering about it.
Later I had an instant messenger conversation with one of my good friends who also has NF2. He has been deaf for 8 years and lives in a much bigger city than I do. Interestingly he informed me that he has been asked this question countless times. He even feared he would loose his driver's license once he became deaf. I don't recall ever thinking about losing my license due to deafness.
He also went on to tell me that a study implemented found deaf drivers to be safer drivers because they were more cautious and visually in tune to their surroundings.
(Click the link in the post title above to find out how deaf people get along without sound)
Contrary to popular belief, "Deaf people are among the best drivers."
"Deaf people make better drivers than people with normal hearing -- and they could be the world's safest motorists, a fascinating new study shows. "That's because they compensate for their disability by concentrating on watching the road, the research showed. "'They've got it all over us hearing people when it comes to driving," said a spokesman for the National Association of Driver Educators for the Disabled. "'They've always taken in everything with their eyes and as a result they tend to see everything when they're at the wheel." "And not being able to hear ambulance and other emergency sirens doesn't make deaf drivers unsafe at all. The study found that deaf drivers check their rear view mirrors frequently and can tell immediately if they should pull to the side of the road." -- Weekly World News, Lantaria, FL, April 25, 1995.
The things you may have never thought of!
Last time I tried to take them upstairs in the shower (winter) did not work out real well. Seeing we only had a working shower faucet that was not the kind you can take off the wall and spray around, I had to lift each dog onto their hind legs to rinse off their belly and chest area. Needless to say I was pretty bruised up the next day (especially my feet from being stepped on).
On Sundays and Mondays is a special deal and they clip the nails and brush their teeth too. I was thinking in the summer I would try to wash them myself outside but they like being washed at the pet store and the dogs never let me brush their teeth anyhow. Thus I determined for the convenience, the included teeth brushing and nail clipping, the time and hassle I save, for my safety, and for such a great price I would continue to take them in and have them bathed.
Back to my bafflement......when I returned to pick them up the ladies communicated to me via paper and pen. I make a habit of bringing writing pads with me when I go places. They are ALWAYS nice to me but clearly I may well be the first deaf client they have had. While one lady was busy grooming (trimming) a small dog, the other girl working there would write to me what she was saying or asking.
The girl wrote to me "Can you drive?". I was not sure if I understood the question correctly. There was a pause in my response which I am sure was awkward for them. During that time I was confused why they would ask me such a question. I thought back in my brain "Did I tell them I have NF2 and that yes I was sick sometimes and I could not drive". No I don't remember telling them that. So then I dug deeper into my memory and recalled that I told them about my balance problem and that is why I took the dogs in to have them washed. But why would that prohibit me from driving? Then I thought that I must be having a really off day and maybe I am stumbling around as if I am drunk! What a horrid thought! I was thinking how in the heck did they think I got the dogs there. Maybe they thought I walked them but I had mentioned when I came in that I was a few minutes late due to all the road construction on Redmond/Fall City road. Gosh I must be stumbling around and they think something is wrong with me!!!!!
In all these scenarios I schemed up in my head, I NEVER thought the question was posed because I am deaf. In the two years I have been deaf and the 4 years prior to that when my hearing digressed and I was HOH (hard of hearing), the question has never been asked.
After my pause and look of confusion I questioned "Yeah. Why wouldn't I be able to drive?" Uncomfortably the other girl translated on paper that the other woman thought I could not drive because of my hearing. Shocked and taken by surprise (I really was not prepared for this kind of question) I defensively retorted "It is not illegal you know!". I have to admit that my protective wall immediately went up and proactivity was on its way out the window.
I imagine that my facial expression exhibited the feeling of being offended. I just was not sure how to react. Perhaps they read my face and questioning look of "WTF?" and so the woman went on to inquire what she meant was how do I hear sirens or know that a cop is behind me. My response was "How is it any different than someone blaring their car stereo and cannot hear the sirens?" I then realized this was an innocent inquiry and not an attack on deafness. Therefore it was my responsibility to educate. I informed them that my world is very visual and while driving everything is visual so we SEE the lights instead of hearing them. I think maybe this bit of information hit home as they informed me it was something they were just wondering about it.
Later I had an instant messenger conversation with one of my good friends who also has NF2. He has been deaf for 8 years and lives in a much bigger city than I do. Interestingly he informed me that he has been asked this question countless times. He even feared he would loose his driver's license once he became deaf. I don't recall ever thinking about losing my license due to deafness.
He also went on to tell me that a study implemented found deaf drivers to be safer drivers because they were more cautious and visually in tune to their surroundings.
(Click the link in the post title above to find out how deaf people get along without sound)
Contrary to popular belief, "Deaf people are among the best drivers."
"Deaf people make better drivers than people with normal hearing -- and they could be the world's safest motorists, a fascinating new study shows. "That's because they compensate for their disability by concentrating on watching the road, the research showed. "'They've got it all over us hearing people when it comes to driving," said a spokesman for the National Association of Driver Educators for the Disabled. "'They've always taken in everything with their eyes and as a result they tend to see everything when they're at the wheel." "And not being able to hear ambulance and other emergency sirens doesn't make deaf drivers unsafe at all. The study found that deaf drivers check their rear view mirrors frequently and can tell immediately if they should pull to the side of the road." -- Weekly World News, Lantaria, FL, April 25, 1995.
The things you may have never thought of!
Holy Heat Wave!
WOW! It is unusually hot here! This morning practice was fortunately early enough before it became TOO HOT! I walked 4.81 miles in an hour and 10 minutes. For the first time through my training I carried water with me AND drank it!
This morning I checked the forecast to know what I should wear. It had said that it was already in the 70s before 8 am and the high was to be 90 degrees. I just checked the thermometer hanging in the kitchen window and it looks like they were correct. It is so hot that it is hard to breath and I keep napping since I got home. I just cannot seem to stay awake in this heat.
I am sitting here right now with a cold gel pack (for a sports injury) on my head. No I did not injure my head fortunately but it is the only method I can use to stay alert. It is hard to think of what I am doing and it feels like my brain is frying! Since this in an insanely bizarre occurrence, we don't have AC because we don't need it. The NW must definitely be setting some kind of heat record here. Here is the weather forecast for the town nearest to us: http://weather.yahoo.com/forecast/USWA0059.html
Yesterday was worse! By 11:30 am it was 89 degrees and the truck temp read 106 degrees at 4:30 in the afternoon. I waited until the evening hoping it would cool so I could take the dogs for a walk. Never happened. I was supposed to also go to an ASL social but the heat made me fall asleep when I lied down to rest my eyes for a few moments. Fortunately yesterday was a day of rest on my training schedule. I am really hoping it cools down tonight so I can take the dogs for a walk.
Keep cool!
This morning I checked the forecast to know what I should wear. It had said that it was already in the 70s before 8 am and the high was to be 90 degrees. I just checked the thermometer hanging in the kitchen window and it looks like they were correct. It is so hot that it is hard to breath and I keep napping since I got home. I just cannot seem to stay awake in this heat.
I am sitting here right now with a cold gel pack (for a sports injury) on my head. No I did not injure my head fortunately but it is the only method I can use to stay alert. It is hard to think of what I am doing and it feels like my brain is frying! Since this in an insanely bizarre occurrence, we don't have AC because we don't need it. The NW must definitely be setting some kind of heat record here. Here is the weather forecast for the town nearest to us: http://weather.yahoo.com/forecast/USWA0059.html
Yesterday was worse! By 11:30 am it was 89 degrees and the truck temp read 106 degrees at 4:30 in the afternoon. I waited until the evening hoping it would cool so I could take the dogs for a walk. Never happened. I was supposed to also go to an ASL social but the heat made me fall asleep when I lied down to rest my eyes for a few moments. Fortunately yesterday was a day of rest on my training schedule. I am really hoping it cools down tonight so I can take the dogs for a walk.
Keep cool!
Sunday, July 16, 2006
Us Now - Anniversary Photos
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When we were married we made a decision to travel every year as that is one of the things that we like to do and is really important to us. This year for the first time we went on a cruise with friends. They had invited us almost a year ago and I was a little hesitant to make plans so far in advance given the situation. In my mind I wondered if the trip could be sold if something happened to me, if someone could accompany Harley in my place, or if he would even go if I was not here or could not go with him.
Well I made it to the trip and we had a fabulous time! I will include more photos when we get them from our friends. It was the first time I have been swimming in the ocean since treatment. We went snorkeling in Labadee Haiti, Ochos Rios Jamaica, and Grand Cayman. I literally did not want to get out of the water!!!
We never had an engagement photo taken of us. On the boat they took SEVERAL photos of us. The one with the sunset is from the first formal dinner night. The one on the right is from when we just got off the ferry in Playa Del Carmen, Mexico to visit the Mayan Ruins. The center photo we purposely had taken. They had a free photo sitting on casual night and we thought "What the hay! Let's try it out!" Unlike the other pictures, the photographer for this last sitting takes a little bit more time and sets you up into a pose. There were a couple shots of us and this was our favorite. Thus this is our anniversary photo to make up for the engagement photo we never had.
Saturday, July 15, 2006
Lattice Face - A Continuation of 2 Years Ago Today
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Photos of me after my cyberknife treatment sessions on July 14, 15, and 16 of 2004.
The above photos of me were taken after the cyberknife treatments. The mask is so form fitting and tight that lattice marks formed on my forehead temporarily. However, the mask was not uncomfortable. Before my first treatment they made a mold of my face using the blue mask you see pictured in the prior post. Many people who have had the treatment describe making the mask as a similiar feeling to getting a facial. I would not know as I never had a facial done before. What I can tell you is that it was warm and wet as if somebody was applying a polymer type of wash cloth to my face. Because the mask has holes, I was able to breath out of it freely.
Soon the mask dries into the uniform shape of your face and is no longer flexible and soft like silly puddy. The best analogy I can think of for it is when people make those egg shape crafts out of big balloons. You know the kind where you stick string in glue and then run it all over the balloon so you end up with a delicate looking egg shape that has hardened? Well I guess it is kind of like that.
I did not experience any pain during the treatment except for the weight of my head/skull being pressed upon the small pillow for so long. I have no idea what the time frame was as I was cut off from the world both visually and auditorially for 30 minutes. I estimate it started giving me a problem within 15 to 20 minutes as when I reached the point where I thought I could no longer stand it, the treatment was over and they were removing the mask. What would happen is that it felt like the back of my head was burning up or on fire! It has also happened to me since then in longer MRIs. It is caused from not moving the head and the weight of the head pressing on one spot. I was given a soft pillow pad under my head but if you have a sensitive scalp it does not matter.
I can't remember if it was the first or second treatment but at one point I was lying there alone in the darkness and quiet thinking about the radiation beams going into my brain. I had a horrid sensation that this was beyond my control and the beams of radiation were like little bugs scurrying randomly and sporatically around in my skull. I was terrified to move even the slightest hair for fear that the radiation bugs would burrow into a wrong part of my brain. It is a weird thing to hand your brain over willingly and know that once it has started there is no turning back. An organ is one thing but your brain is.....well heck it is your brain!
There was an intense amount of radiation delivered to my brain (20 gray/rads each treatment) but the dose was dispersed among several entry points of my skull so that the full 20 rads was delivered to a precise location within a mm of accuracy (the tumor or as one of my friend's had described it "one of the evil twins".......my description "brain moles"). Therefore the rest of my healthy brain tissue was subject to minimal doses. But still, the thought of cooking your brain can be a little unsettling. Yet in my personal opinion still ......It sure beats having your skull cracked open and disected apart (open brain surgery). It is no secret that I have and still do dread and fear brain surgery.
Afterward I was given a steroid pill (decadron) and advised to drink lots of water. The treatment dehydrates you some (hence the markings on my face and the dimples which are greater than what they are now even though I have lost weight).
When I went into the open sun it was like a bolt of lightening struck my eye sockets and head. I had a massive migrane which I thought was from forgetting my sunglasses. On the first day I had to stop at Kmart in Santa Cruz and buy some. I think I was also very cranky and impatient.
I also got incredibly nauseated and asked for antinausea medication on the 3rd day of treatment. The first day I felt pretty crappy on the drive to Santa Cruz but felt better after getting into the water. On the second day our friends KC and Dianne joined us. When we drove to San Francisco I literally did not think I was going to make it there. The short half hour drive was unbearable and we had to stop by the water overlooking the Golden Gate Bridge so I could get some air. It was actually rather cold but I was so sick that the cold air is the only thing that gave me some relief. I stood out there in my shorts for a long time until I had the chills. I have no idea how long it was but we watched the sunset (what I could concentrate on of it).
Take a look at the link for a small slide show of a few photos I have. The one of me standing in the tree is when I still had my balance and could freely climb a tree. I can no longer do so unless someone helps me in or out or there is some easy safe way for me to do so.
Friday, July 14, 2006
Two Years Ago Today
Picture: Larry (the cyberknife radiosurgery technician) fitting me for the mask which holds my head in place. The mask firmly attaches my head to the table so that no movement can be made while the robotic arm whirls around my brain using 3D image mapping to zap beams of radiation through my skull (calculated via physics) so that delivery is to the target area only.
Two years ago today:
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Two years ago today:
- I was in California at Stanford University Medical Center.
- I visited Santa Cruz California and enjoyed body surfing and boogie boarding one last time.
- I splashed into the waves of the ocean with complete freedom for the last time.
- My mom hugged me as if saying goodbye. Giddily I scoffed saying "Geez mom I will be right back." I just did not know that life as I knew it was coming to closure, she was hugging the old me goodbye, and that a new me was about to be reborn.
- I did not know the extent to which my life was about to change.
- Beyond my control I surrendered into a realm of no sound or sight for 30 minutes. It is one thing to live without sound but not having either for 30 minutes can seem like a long time and be almost unbearable. It is a challenge to keep thoughts positive and keep the brain mentally sharp and productive during that time.
- I made the most difficult decision of my life. I handed my the essence of my life into the hands of a team of strangers. I surrendered my brain finally into the care of people who I had just met. I let it go and I let God.
Monday, July 10, 2006
Slip Sliding Away....A Hard Lesson
Remember that song from oh I don't know the 70s or 80s?
When I was a kid I remember my mother was singing that song while we were hiking along a river bank and well...yeah she started slipping sliding away in the the mud! LOL I have learned now that this is no joke!!!
Back in June I had a deadline to get out my fundraising letters for the upcoming marathon. Well if you know me you know that I am not a fast writer like my sister (who happens to be a TV journalist and reporter). It actually takes me a long time to think of what I am going to write, to start it, and then once it is written I take a long time tweaking it. In addition, it is very difficult for me to handwrite something (thanks NF2) and I had to hand address 50 letters! It took FOREVER!!!!!!!
Anyhow, as a result I stayed up through the night. When I am more tired or just wake up my balance is HORRIBLE!!!! I can't even remember now but as I was walking down the carpeted stairs of my home in the early morning of June 15th I literally SLIP SLIDED AWAY! Perhaps I was too tired to catch myself on the railing like I normally do or maybe my legs just gave out. I really can't remember. Yet, I DO recall landing on my tailbone HARD....like scary hard!
I have never fallen quite that hard before and I was in pain sleeping. I could not lie on my back and to turn either way in bed sent sharp pain spasms through my lower pelvis area. In addition, it hurt to bend or sit which reminded me of the sensation I experienced immediately following a bone marrow draw.
I still went to practice that evening but was rather stiff. Fortunately a teammate was interested in communicating with me and learning some sign so I was able to walk slower. I think I took friday off as we left to visit my parents. Saturday the 17th it was not getting any better and I had a hard time keeping up with my dad and Harley on our walk with the dogs. Still in pain on Sunday (father's day), I was still committed to walking the dogs and I could keep up with my dad and Harley that day.
On Monday I went into the Urgent Care center for xrays as I began to have a deep seated fear that I may have damaged myself seriously and that I better get the scoop before I do something irreversible on our upcoming vacation. FORTUNATELY nothing was broken or fractured!!!!!! I just had an extreme bruise of the coccyx which takes weeks to heal.
The doctor at the center was going to prescribe pain medication but I already take a medication that makes me drowsy enough. I did not feel like spending my entire vacation in a lethargic or catonic state. Therefore, I requested some celebrex which helped greatly when I took the medication but I am still sore.
This thursday will be 3 weeks since the incident and although I have been practicing for the marathon and I do not experience sharp shooting pains, I am still sore. I only have 2 celebrex left and I am clearly going to need to get some more as I have not completely healed yet.
For those who have been around me over the past year, now you know why it is terrifying going down the stairs for me (especially if the stairs are concrete!!). Today I had a jolt of fear run through my spine as I again nearly slipped going down the stairs! Luckily I was able to catch myself and prevent the fall by bracing myself with my arms between the wall and handrailing. My stomach dropped at the moment as if I had near head on collision with an automobile. That is how scary falls can become when you are balance challenged and hurt yourself.
For this reason, when I go down the stairs I exercise great caution and probably look like an elderly person. In my house however, I get a little too comfortable running around in my bare feet. I used to be a person who would run up and down the stairs so it is hard to not forget what I could do before and want to jump back into my old skin (self).
When I was a kid I remember my mother was singing that song while we were hiking along a river bank and well...yeah she started slipping sliding away in the the mud! LOL I have learned now that this is no joke!!!
Back in June I had a deadline to get out my fundraising letters for the upcoming marathon. Well if you know me you know that I am not a fast writer like my sister (who happens to be a TV journalist and reporter). It actually takes me a long time to think of what I am going to write, to start it, and then once it is written I take a long time tweaking it. In addition, it is very difficult for me to handwrite something (thanks NF2) and I had to hand address 50 letters! It took FOREVER!!!!!!!
Anyhow, as a result I stayed up through the night. When I am more tired or just wake up my balance is HORRIBLE!!!! I can't even remember now but as I was walking down the carpeted stairs of my home in the early morning of June 15th I literally SLIP SLIDED AWAY! Perhaps I was too tired to catch myself on the railing like I normally do or maybe my legs just gave out. I really can't remember. Yet, I DO recall landing on my tailbone HARD....like scary hard!
I have never fallen quite that hard before and I was in pain sleeping. I could not lie on my back and to turn either way in bed sent sharp pain spasms through my lower pelvis area. In addition, it hurt to bend or sit which reminded me of the sensation I experienced immediately following a bone marrow draw.
I still went to practice that evening but was rather stiff. Fortunately a teammate was interested in communicating with me and learning some sign so I was able to walk slower. I think I took friday off as we left to visit my parents. Saturday the 17th it was not getting any better and I had a hard time keeping up with my dad and Harley on our walk with the dogs. Still in pain on Sunday (father's day), I was still committed to walking the dogs and I could keep up with my dad and Harley that day.
On Monday I went into the Urgent Care center for xrays as I began to have a deep seated fear that I may have damaged myself seriously and that I better get the scoop before I do something irreversible on our upcoming vacation. FORTUNATELY nothing was broken or fractured!!!!!! I just had an extreme bruise of the coccyx which takes weeks to heal.
The doctor at the center was going to prescribe pain medication but I already take a medication that makes me drowsy enough. I did not feel like spending my entire vacation in a lethargic or catonic state. Therefore, I requested some celebrex which helped greatly when I took the medication but I am still sore.
This thursday will be 3 weeks since the incident and although I have been practicing for the marathon and I do not experience sharp shooting pains, I am still sore. I only have 2 celebrex left and I am clearly going to need to get some more as I have not completely healed yet.
For those who have been around me over the past year, now you know why it is terrifying going down the stairs for me (especially if the stairs are concrete!!). Today I had a jolt of fear run through my spine as I again nearly slipped going down the stairs! Luckily I was able to catch myself and prevent the fall by bracing myself with my arms between the wall and handrailing. My stomach dropped at the moment as if I had near head on collision with an automobile. That is how scary falls can become when you are balance challenged and hurt yourself.
For this reason, when I go down the stairs I exercise great caution and probably look like an elderly person. In my house however, I get a little too comfortable running around in my bare feet. I used to be a person who would run up and down the stairs so it is hard to not forget what I could do before and want to jump back into my old skin (self).
Relay for Life Photo Slideshow
MY EARLIER MESSAGE: HELP! I can't remember how to create a slideshow to share with you. I have all the photos from the Relay for Life event but I can't recall how to set up a slideshow so I do not have to post one at a time.
Someone who is really savy at blogging and photos please send me your advice under comments.
Thanks to my old friend Jeff Lozon from back at NMU, I was able to figure out how to setup a slideshow again. Jeff if you read this you may be baffled. For some reason I got an invite from you to yahoo photos 360 but you don't have any photos. Anyhow, by going to the link and dinking around in there, I was able to find my previous albums and that of my sister's and brother's. Fortunately I was also able to figure out how to add new photos and create new albums and slideshows. So thanks buddy! :o)
Ok I am creating the slideshow right now. There are lots of photos so I might not be able to finish tonight and tomorrow is my anniversary. I will post what I can and add more later in the week.
Please take time to look at my fantastic group of friends who comprised our team. I will add their names to the photos and descriptions later in the week also.
Note: We are all decked out with tropical shirts, flower lais, grass skirts, boogie boards, and palm trees as our team name and theme was "Guilligan's Cancer Free Island". LOL The palm trees got knocked over from the wind so I kept joking around that we had a hurricane on our island. We really had a great time!
Thanks Diana for your camera to take the pictures and for my teammates who joined in the fun and cause with me: Diana, Laura, Yumi, Kristy, Melody, and George. Special thanks to Laura's children Cody and Destiny who also helped us out and were a part of the team. Unfortunately we did not get any pictures of them in the great shirts Laura had made for them. The shirts have the names of all their family members who have gone through cancer and it is written in honor of them.
Cody is 13 and Destiny is 8. I was completely touched by their dedication and participation in this event. On Saturday May 20th Cody walked 10 miles in memory of his grandfather who had recently passed away. In addition, Destiny made me a very special luminaria candle bag (which I have kept) in honor of my battle with cancer.
It was the dedication and commitment of all these great friends who made the essence of our team. Their positive charm and character encouraged everyone there and we were recognized for the best team spirit. I thank you all for making it such a memorable event!
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