Happy Birthday, Jay!

Sunday, 19 February 2006

Today is my brother Jason's 28th birthday (and, according to Eric who gave me the Seattle update about Leilani Lanes closing and the monorail deal being called off, it is also Kara and Chris' 1st wedding anniversary...So congrats to all!).

After a successful, but crowded, yoga session this morning (I was good about babying my left hamstring this time), I headed to Ala Moana for a less than successful shopping session (although I did manage to use my own birthday money from my brother to buy myself some IPOD car accessories), I decided on just a card and the promise of a gift coming soon.

I visited Jenn and her week-old baby boy Aidan. He was sleeping the whole time, as newborns do, so we just chatted and took pictures.

Then, I headed to Kailua to meet Mike's friends, but I couldn't stay for dinner as we had family plans, so I just introduced myself, chatted for about 20 minutes, and dropped off a salad and brownies for them to enjoy. We'll have to catch up again next time.

Both my brother and I were late for his dinner at Tanaka of Tokyo, the teppanyaki restaurant at the Ilikai Hotel. Once we found parking, got seated, and all enjoyed some food, we were all a happier bunch. It's always an entertaining way to eat. Plus it was fun getting to know my little stepsister's new boyfriend and hear about his sweet, romantic Valentine's gift to Lindsey. (He delivered red roses to her before she left for school Tuesday morning, and left her with a gift of a heart-shaped baking pan filled with frozen ice and something inside. A note on top said to wait until it melted to see what was inside. After she let it melt and retrieved what was inside, the note read, "Now that you've melted my heart, Will you be my valentine?"...Aw now, isn't that sweet?!) Sixteen year olds these days I tell ya! Some guys out there outta learn a thing or two from Phil.

Once again, Happy Birthday, Jay!

"Hi, My name is Tanya."

Saturday, 18 February 2006

The surf in Kailua has been so good lately, that Mike just had to go at 8:30 this morning. I skipped yoga and decided to go along, just to read my book at the beach. While he surfed out at Flat Island, a family set up their things in front of me. I thought they looked familiar, and figured they might be Mike's friends, and when I heard them call out each other's names, I knew it was them. I decided I should go introduce myself, even though I have never formally met them yet (tomorrow, we're supposed to have a dinner get-together). I went up to Rich and Jimmy and told them who I was, saying "Hi. I haven't met you yet, but my name is Tanya." When they asked how I knew it was them, I told them I recognized them from pictures Mike has around the house. It was nice to meet them, and finally Mike came out of the water and we all got to chat a bit.

Later in the afternoon, Mike helped me drive out to Kunia to pick up a red couch I wanted to buy from Craigslist (My brother and I are on that site daily looking for stuff!). We strapped it in his truck, and then my cousin Daryl helped him carry it down the 80 or so steps to our house. At least it wasn't that heavy (Well, I don't really know because I was just guiding the way!).

Went out to dinner with Dad, Jay, and Mike and Susan (visiting from Seattle) at Kim Chee 2. We caught up on Mike's kids, the surfing/shaping business, and Seattle weather.

Afterwards, we headed out to the airport to pick up Mike's good friend Wendy who came in from South Carolina for a NOAA conference. The three of us squished into his front seat, and drove back home to Kailua through the downpour of Windward O'ahu.

I've Been Attacked!

Thursday, 16 February 2006

Okay, I've been attacked on more than one occasion by flying spit when I'm trying to help a student sound out words and letter sounds, and I'm a little too close to his/her face, but I've never been attacked by food before...This is a first.

Today, my dad asked me to floss his teeth, and so I started to floss (and note, that I'm fairly close to his mouth so I can see where I'm flossing), and BAM! A piece of meat flies in my face! I start laughing, but continue as a dutiful daughter should, this time making sure that my own mouth is closed and prepared for a spray.

I accidentally scratch my dad's lips with my nails, step on his toes, floss his gums too hard, and amongst the "sorry"'s and "oops!", I start laughing. And, then I start noticing the strange things in his mouth, from the crookedness of his teeth to the bumps on his gums, and I guess my dad didn't think too fondly of my comments due to my attention to detail. Finally, my dad says, "Okay, enough. Stop! Just get away already!"

I walk away laughing, and wash my hands and my face, glad that I'll never become (nor will my dad want me to be) a dental hygenist!

Happy Valentine's Day!

Tuesday, 14 February 2006

Because I spent all day in an ESLL district training today, I didn't get to see the festivities at school. I stopped in to drop off some stuff after the workshop this afternoon, and found out that for Valentine's Day, today was also Teacher Appreciation Day at our school. Classrooms were given teachers to "appreciate", and so I received some sweet surprises from two second grade classrooms. One class made a book of letters from the students thanking me for all that I do as an ESLL teacher, along with a $20 gift card to Long's. Another second grade class gave me a gift certificate to Barnes & Nobles, along with a pan of brownies and a nice class letter. How sweet!

I am not quite sure what I'm doing tonight. My brother's new "friend" came over last night to make chocolate covered strawberries and wrap them in these cute little boxes for all of her friends. Jay experimented with other things too and ended up with chocolate covered kakimochi (Japanese rice crackers) and bananas. Mike and I already celebrated our Valentine's Day over the weekend, but since I was giving him a hard time, we might just have a low-key dinner tonight. I still need to visit my friend Jenn in the hospital as she just gave birth to a baby boy, Aidan, on Sunday. And, tonight is also our second Tuesday of the month, when we have our ALS support group meetings. They plan to have a massage therapist there to do massages and celebrate with vegetarian treats (Since we've been having our meetings in the "Wellness Center" of the hospital the past few months, we are banned from bringing greasy, junk food that most local carnivores enjoy for potlucks.)

Hope you all have something nice planned...All I know is I waited in a long line with the rest of the men at See's Candies this afternoon to buy chocolates for my stepmom (from my dad). So, if you boys out there haven't bought a little something yet for your sweethearts, friends, or MOTHERS, you better hurry!

Find Someone To Love

Monday, 13 February 2006

As we approach the Hallmark-run, commercialized V-Day, I thought I'd post a more touching essay someone sent me from an ALS website....

ALWAYS LOVE SOMEONE ALWAYS

By Noah benShea

This is the first in a series of articles for The ALS Association by ALSA National Laureate Noah benShea.   Look for Noah benShea’s articles online at www.alsa.org and in upcoming editions of A Reason For Hope.

It is a few weeks ago. I am at my office working on this message.

I receive a phone call from a woman who says her name is Jan.

She tells me,  ”I read about your appointment as National Laureate of ALSA, and that you lost your father, and I lost my mother, and I hope I am not disturbing you but I just wanted to connect, needed to connect, and, and….”

And she runs out of words.

And I say to her, “You are not disturbing me; we are family; the anguish of ALS and the triumph of the human spirit has bound us together, forever, as family.”

And she cries.

And I listen.

And when I hang up, I can hear a hundred thousand voices still on the line, needing to be heard.

And if it is the silence between the notes that makes the music,

then this is what I heard in the screaming silence of people

whose lives have been touched – and muted - by ALS.

For people with ALS life is divided into two distinct time periods:

Before I learned I had ALS, and after.

Before I had ALS anything I had to deal with could be tough, but I could deal with it.

After I had ALS, there was nothing tougher I had to deal with.

This is first in a series of messages I will be writing for ALSA.

And it is only fitting that the first of these is directed to those at the very front of the front lines, those with ALS. Unfortunately, too often modern medicine – no matter its best intent - takes people and turns them in to patients. However long before you were a newly diagnosed, or a warrior well beyond being diagnosed, you were and are a person, and in these efforts I do not write to the disease, or to you on your continuum as patient, but to you as person, and to your fears, and your courage, and your struggles, and the quiet private heroism of your day to day living. Courage is not the absence of fears but how we wrestle with them. And bravery we discover is often fears that have said their prayers.

On the day you or someone you love is diagnosed with ALS the Cosmic Van and Storage Company pulls up and your previous self is picked up, and packed up, and moved into a separate world, into a time suddenly and completely separate from a memory of a life a lifetime ago where no matter the trapeze act of one’s life there was always and still a safety net. My previous self was packed up crated on a hot summer day in 1985. My previous self left the room on the same day I entered a small, green room with my mother, and my father, and a sad eyed doctor, and heard my father diagnosed with ALS.

My previous self was of a mind that my big, strong, supportive, loved to laugh father was mortal but impervious, and my mother whose strength of character was tidal could survive any event intact, and anything that life could throw at me I could shield with a turn of a phrase, a strong cup of coffee, and the right attitude.

What my previous self was about to discover was that if you want to give God a good laugh, tell Him or Her your plans. That life is what happens while you’re making plans.

There’s a story told of two friends who share a life long love of baseball. The friends promise each other that who ever dies first will come back and tell the other if there’s baseball in heaven. And one day, Phil passes away. A year later Mort is walking down the street and sees Phil. “Oh my gosh Phil, I miss you.”

“And I miss you too,” says his friend. 

“But now that you’re here I need to know, is there baseball in heaven?”

“Well,” says Phil, “I’ve got some good news and bad news for you. The good news is that there’s baseball in heaven. The bad news is that you’re pitching tomorrow.”

In 1985, in a hot, small, green room, my father got the news he was pitching tomorrow. Even if tomorrow was five years later, even if he was in denial, and anger, and fear, even if my brothers or I would have taken our father’s place on the mound. Even if we made it clear to the Big Team in the Sky that they had picked the wrong guy. 

Every guy we soon came to learn was the wrong guy. Every woman we soon came to learn was the wrong woman.

Few of us have a calling in life for what we are sometimes called on to do - or comes knocking. And still the call comes. Destiny we discover doesn’t need a forwarding address. Destiny makes house-calls.

What makes us all blood brothers and sisters is that we all bleed. When we feel we can’t carry on another step, when we feel ourselves buckle under loads that burden and bend us, when we struggle with feeling alone and unseen, this is not our isolation, though we may feel isolated. Rather it is our shared humanity and our shared courage of everyday living, and herein our shared heroism.

My father didn’t yearn to be a hero. He would have been just as happy to live out his life hugging his wife, cradling his grandkids, and eating his favorite giant guacamole dripping burrito in complete anonymity. But things didn’t work out that way, and the tough lesson to swallow was that when things don't work out the way we want life isn't arguing with us - only with our plans.

You and I know what ALS is, and what it does. It doesn’t matter if we know this in poly-syllabic statistical scientific terms. It does matter that we know it up close and personal, too up close and too personal. And it does matter that I know it like you know it, and I wish I didn’t know it just the way you wished you didn’t know it.

Like you, I have learned that tears falling long enough can scar rocks. And I’ve seen the scars of ALS’s graffiti. And I’ve read the scarred tears on a wall of souls. And this is what the sign says to me, and this is what I have deciphered as the lesson that perhaps, perhaps will get any of us through the night even at high noon: Put your faith not your fears in charge.

Imagine if you will for a moment that this life is a wagon that we have been assigned to pull. And inside of each of us are horses of fears and faith that we can call on to pull this wagon. But all of us have many more horses of fear than faith, and if we put any of our multiple fears at the lead of the line of horses, our fears will not take the lead, our fears will be afraid to go anywhere, and inspire only fear in the rest of our energies that are in harness. But if we take even a single horse of faith and put it at the front, our faith will take the leap, and our fears will follow, and indeed our fears will fuel our faith, if we dare to put our faith and not our fears in charge.  Put your faith not your fears in charge.

Several years ago, in Tanzania, a school librarian found herself as the sole tourist on a safari. Sleeping in her tent one night, she was awakened by the earthquake-like trumpeting of a herd of elephants heading her way. Fearing for her life, and completely without experience in coping with this fear, the woman reached for her diary. With all of life’s determination she furiously scribbled the only line that would later be readable: “Real women do not get trampled by elephants!”

In all of our lives there are elephants bearing down on us. Or it feels that way.

Helen Keller wrote, “Security is mostly superstition.” We are often separated from our fears only by tents of superstition we have pitched in the night. What transforms some of us into Sheena, Queen of the Jungle, is not the form-fitting leopard skin but the form of our character. Character is seldom formed overnight but often in the soul’s dark night. Greatness is rarely achieved when things are great. Things don’t have to be great for us to be great. An army of sheep led by a lion will defeat an army of lions led by a sheep. Put your faith not your fears in charge.

To any of you who are reading or hearing these words and have ALS please know that I do not presume to know your problems from your perspective.  I cannot presume to know your pain nor presume to know your solution.

I can however presume to speak to the courage that it takes for any of us, all of us, to deal with the day to day.

All of us are alone marching together. The shared humanity of our fears, the anguish, the isolation, the day in day out struggle for those with ALS, and those who love them, and those work in the cause are common to all of us. The experience of fear however is always individuated. And this aloneness is common to all of us who have been blessed with life but only given a mortal’s time line and never know when our time is up. Yes there is baseball in heaven, but one of us, some one of us, is always pitching tomorrow. My friends, we are here alone together.

Five years after my father’s previous self was crated up and packed away, my father took his leave. But he has not left. He has passed, but he is not gone. The veil between the worlds I have discovered is porous. Those who have left have not left us. They have left us instead to tell their tale, left us to fight the fight, left us to rage, rage against the dying of the light.

To all of you at the front of the front lines, here is a promise. By your lives we will find cause to live, and by our living make a difference, as you did by your daring to live, and we will never forget that, ever, and we hold your truth close, and in doing so hold you close, forever.

Just before my father passed, I finished writing a book entitled Jacob the Baker. Here is a story from that book that I wrote to help me and my father through the night. May it be a source of strength for you, as you, in your struggle, are a source of strength to so many.

“Jacob,” asked Mr. Gold whose days dangled by a thread, “where do you find the strength to carry on in life?”

“Life is often heavy only because we attempt to carry it,” said Jacob.

“But I do find strength in the ashes.”

“In the ashes?” asked Mr. Gold.

“Yes,” said Jacob with a confirmation that seemed to have traveled a great distance.

“You see, Mr. Gold, each of us is alone. Each of us is in the great darkness of our ignorance.

And each of us is on a journey.

“In the process of our journey, we must bend to build a fire for light, and warmth, and food.

“But when our fingers tear at the ground, hoping to find the coals of another’s fire, what we often find are the ashes.

“And in these ashes, which will not give us light or warmth, there may be sadness, but there is also testimony.

“Because these ashes tell us that somebody else has been in the night, somebody else has bent to build a fire, and somebody else has carried on.

“And that can be enough sometimes, that can be enough.”

All of us are on a journey.

All of us are trying to find our way.

On that journey, people with ALS have a message for all of us:
Always Love Someone.
And a reminder to love themselves.
Perhaps one day we’ll all come to understand what ALSA really stands for:
Always Love Someone Always.
Noah benShea Copyright 2005 All Rights Reserved

For more information about Noah benShea, go to http://www.alsa.org/news/article.cfm?id=609.

http://www.alsa.org/news/article.cfm?print=1&id=653
©2006 The ALS Association. All rights reserved.

Yoga, Surfing and Eating (What Else is New?!)

Saturday, 11 February 2006

Last night when Mike and I went to yoga, I pushed myself too far again and reinjured my left hamstring. Looks like it wasn't fully healed yet. So, this morning I dragged Mike to yoga again to work it out. It was tender, so I couldn't do some poses on my left side, but it felt good to stretch it out. The rest of the day, I sat on a hot compress. I worked on scanning my dad's photos onto the computer. Since I can't be at his fundraiser in March (I'll be at Marissa and Nate's wedding in Seattle.) I'm putting together a slideshow of all of him and his sports memorabilia and family and friends.

After watching some of the Turino Winter Olympics, we headed to the beach. We drove through Waimanalo to Cockroach Bay, where Mike went surfing. While he surfed, I sat in the back of his truck reading a book, watching the surfers and the hanggliders on this blustery day. It's been windy and cold lately (I know, not as cold as Seattle, but cool enough for me to break out the socks and long sleeved shirt.)

Mike cooked dinner for me tonight for the upcoming Hallmark day (He surprised me with tulips yesterday), since he has to work Tuesday (although, wait a sec, I acted as sous chef and helped prep everything...). We had a delicious meal of Salt and Pepper Lemongrass Prawns, bok choy, watercress, and fried tofu. Plus, he made a coffee cake today (good thing he bakes, cuz I don't!), which we have nearly devoured already! We were going to have mango with sticky rice for dessert, but couldn't get the internet working to get a recipe for preparing the sticky rice, so we'll have to have that another time.

"ER" Show Review

Friday, 3 February 2006

The "ER" show last night was VERY well done, and James Woods did an excellent portrayal of an ALS patient. His performance was so right-on, from all the stages of the ALS symptoms, that I was crying within the first five minutes of the show, all the way to the end (I was probably a bit emotional from just the realization of what my dad will go through one day too.) But, from the emotions of the caregiver to the issues of putting a trach in when the patient has been stricken with pneumonia, to the eye and facial movements of the patient Nate Lennox...it all was just SO real. I was a little upset by the way they ended the episode, but I suppose it was the most diplomatic thing to do. In a way, it gives you hope that ALS patients CAN live long lives, yet it is such a hard decision to make for both the patient and family when one is considering the quality of life.

Today, it was too windy for the guys to take my dad fishing on the boat, so instead his friends Ralf and Glenn took my dad to see a movie. They hung out and watched sports on TV in the afternoon.

Tonight, Mike and I took my dad to his last ShinYoo-En winter session. His friend introduced him to this Buddhist temple, which required him to go for seven days in a row. Bernice has been going with him, but tonight could not go. So, to finish off his seven days, Mike and I took him. Tonight's session was a special one, because there was a bean throwing ceremony after the series of meditations. The ceremony was done in Japanese, so we had earphones to translate so we could follow somewhat. Some of the longer meditations were harder to do, but after repeating some of them about five times, I would get my breathing and rhythm figured out by that fifth time. The bean ceremony was to send evil out and bring good luck in. The goal was to catch as many beans as we could. We left with bags full of these special Japanese beans.

After the interesting cultural ceremony (the lady complimented Mike with his good tone when chanting the meditations), Mike and I took my dad to the Punahou carnival. I had not been to the carnival since high school, and Mike, in all his years living here (growing up here!), he had never been to the carnival. Although it was hard to navigate a wheelchair through crowds, I led the way, and Mike pushed. We headed straight for the malasadas, and ran into Jay's friends and people my dad knows. Mike and I bought books at the White Elephant sale, and ran into a few more friends before leaving with our fried noodles and cotton candy. And for the first time in years...it didn't rain at the Punahou Carnival!

WATCH "ER" TONIGHT ON NBC!!!!

Thursday, 2 February 2006

Happy Groundhog's Day! We had fun talking about what forms shadows and those hamsters (as my kindergartners called them), i mean, groundhogs today.

Also, don't forget to watch "ER".

Watch "ER" tonight to get a glimpse of the dreadful disease my dad is dealing with, ALS, or Lou Gherig's Disease.

James Woods plays a person living with ALS on "ER" tonight, Thursday, February 2nd.
In Hawai'i, the show is from 9 - 10 pm on NBC, Channel 8. http://www.nbc.com/ER/

In today's Honolulu Advertiser, "ER" is listed as "Tonight's Must-See".....

"The beginning and end of this hour are as good as anything you'll see on TV. The rest is strong, too, making it a superb episode. James Woods plays a brilliant professor in the final stages of Lou Gherig's Disease (ALS). Only his eye movements remain enough to propel his wheelchair and his artificial voice. As he crumbles, Abby seems obsessed with keeping him alive - possibly ignoring his wishes. This is an Emmy-worthy performance."

Background, Before the Show....

For more than two hours at Warner Brothers Studios in Burbank, Calif., last December, six individuals with ALS gave actor James Woods a crash course in living with Lou Gehrig’s disease as he prepared to play someone with the disease on the critically-acclaimed NBC television show “ER.” The episode, titled “Body and Soul,” is entirely devoted to Woods’ Nate Lennox character and is scheduled to air on Thursday, February 2 (check local listings).

See the whole article below:

Actor James Woods Receives a Lesson From People with ALS
http://www.alsa.org/news/article.cfm?id=871