Saturday, June 28, 2008

Sunday Scribblings - Vision for Robbin


I strolled silently as a ghost
that appears without notice or direction,
when suddenly I spot a gathering,
A legion, of white daises;
Under the cedars, beside the path,
Smiling and reaching for the sun.

Happy as the child at play
and awed at the blue of the sky,
They stand in tall crowds
a head above the rest;
hundreds I seem to count,
pinwheels in touching embraces.

For when stillness sets with the sun
and thoughts steal the light,
I remember them in my mind
which always brings a smile to my lips;
and then my heart expels the crazies,
with visions of smiling white daises.

This was written for my friend Robbin at who is a fellow warrior battling cancer just after losing her 30yr old son. She really needs healing thoughts and prayers.

Friday, June 27, 2008

Friday Updates

Have you ever tried to put a tight jumpsuit on a barbie doll? Well try putting a wet suit on a 46 year old limp body and you have the every other day routine of Tammy and Dave. It's not a pretty sight to watch while he pulls over rolls and wobbly bits. Poor Dave must then get in the pool first to help me out of the hoist and into the pool. When it's 85 outside and the water is 70 it is a shock to your body. So you get a few expletives and major shrinkage from Dave. lol I'm now using 3lb weights on my leg's for a better workout and having that warm water poured in my suit keeps me limber. He gets out and gardens while I workout. He keeps a very close eye on the redheaded seal in the pool. Did I mention I can no longer swim? My dumb bell buoy's are a wonderful invention.

I'd like you to meet Sampson, my new grand dog! His mom is my oldest daughter's new Dopple Dachshund or miniature spotted wiener dog. She wanted to test her readiness for having a baby. Who knew a puppy could be an effective birth control method. I could not decide which was more stressful, a visit with TK or a spaz puppy dog. They are both very affectionate with gramy and so cute.

My oldest, Michelle, has been ticked off at me for about five years. She tried to hide it until I decided to move two hours away. If she were to be honest she has had issues with me since I married Dave. She likes Dave but I think she feels replaced and unappreciated for the years where she was my caregiver/daughter. There is a bond between mother and daughter but then you add the care giving closeness and it's tough to let go. She was already moved out when Dave came along but her perception is her reality. When I rented her childhood home to her sister that was the nail in the proverbial coffin. I had no idea she wanted it due to having just moved into her own home.

Eight months was as long as she could handle without seeing her mom. I sat back and waited for her to figure things out. When I got the call she was coming I was excited and yet apprehensive. She tried to hate the house but couldn't and I was grateful for no angry outbursts. Although her feelings of anger are still there we have moved on. We discussed things over the phone and simply had to agree to disagree. It's called the mother, daughter dance.

Then there is my Nikki. She will soon be ten and it seems our move has also rocked her world. The year before we moved I lost my Manny dog at 17. He has been Nikki's protector and mentor her whole life. She even hikes her leg to pee just like Manny. The vet came to the house to put Manny down and said it would help Nikki not search for him if she was in the room. She still grieved and became clingy. With the move it got worse. She won't go out at night alone, barks the whole time we leave her, poops to punish us for leaving and we have no dog sitter up here. We tried dogie Prozac, a Kong toy with peanut butter, leaving her in the basement with kitty and she now sleeps in a bed by our bed not in it. OK, that's punishing me!

She's making us a prisoner in our own home. We can't travel overnight together and I won't leave her in a car. A kennel would send her into a anxiety coma and little kids and other dogs suddenly freak her out. We just feel bad and yet it's driving us nuts! We are currently trying a beeping collar with a high pitched noise. The vet said to re-train Nikki we must be re-trained...Oy vey! Wish us luck!

A HUGE thank you to Dave for taking me and all that came with me. ;)

Wednesday, June 25, 2008

3WW - A Light at the End of the Tunnel?

Rumor - Shake - Spontaneous

I have not been able to shake the gnawing feeling that I have been misdiagnosed. Other ALS patients, support groups and friends have also had the same thoughts. Over the last four years a small glimmer of hope has been growing as each year passes that just maybe the doctors had got it wrong, again. After all it took four neurologists and four years to go from MS to ALS.

The last neurologist I trusted dedicated his life to finding a cure for ALS but sadly he now has ALS and the rumor is he is under hospice care. I have not seen a neurologist in five years until this week, but have kept up on all the latest research. There is usually no reason to see a specialist until you need a procedure but an updated opinion couldn't hurt.

I sat waiting in a tiny exam room for the "new guy" to appear. I was there under duress by my new primary care doctor. Who was a tad uncomfortable taking me on alone. Dave waited in the chair across from me as I tried to get comfy on that cheap tissue cover. There were models of brains on every surface that held our interest until the doctor arrived.

He was about my age with a very bad toupee sitting crooked on his head. He shook each of our hands with a big warm smile. I was thinking OK here it comes, the big drawn out physical exam of standing, pushing and walking. Instead he surprised me by setting aside my file and asking me what I thought I had. That caught me off guard but surprisingly I gave him a quick answer. An illness that acted like ALS but stopped at the lungs (not fatal). Now he was caught off guard as he said "I agree" surprised at my knowledge.

He took out the dreaded rubber reflex hammer and tapped my knees. I have clonus which causes hyper reflexes in my legs. Both legs shot out like rockets as he says "well there goes that theory" disappointed. It can't be what we thought, this is classic ALS. As I heard those words my secret flame of hope was gone. He continued by asking me "how I wanted this to go?" I knew what he meant as I looked him squarely in the face saying "I want to keep fighting until the cure."

He continued to over enunciate his words due to speaking in broken English to make sure we were on the same page. Going over the procedures that would need to be done all the way to a breathing machine, at some point. Yada, yada, yada but then he said do you know about Lithium? "Isn't that for bi-polar patients?" I asked. He said there are findings that it can create new cells in the brain that might help ALS, Alzheimer's, Parkinson's etc. I had a spontaneous burst of enthusiasm and optimism. "What about side effects?" I asked and he said "it was a low dose that may make me a bit sleepy." I said " I'll take the prescription and read about it, then decide." It's not a cure but it supposedly buys time. The doctor rubbed my back and said "who knows we might be writing a paper on the miracle ALS survivor someday."

I've read some good and some bad reviews from other ALS patients. The jury is still out but there is always that glimmer of hope.

Write on Wednesday

What's Your Line?

"What do you catch yourself thinking about? What experiences and relationships in your life are the most meaningful? What catches your attention when you’re out and about? These are the things you’re going to know, the things you’re going to care about, and that knowledge and caring will resonate in your writing.
This is where you’ll find your line."

Since I was a little girl I was a chatter box and always got a laugh. In school I kept up the chit chat much to the dismay of my teachers. I was the outgoing cheerleader that enjoyed being with people and making them laugh. I must also confess I loved the boys and was an outrageous flirt. Fast forward, past the hard 20's, and my world was turned upside down.

I was a 29 year old, single mom of two young girls, stripped of my career. Being told that ALS would take my life and the stability of my little girls. I had no time for pity parties. I had to prepare my girl's for a life without me. That would haunt them adversely to this day. When everything in your world begins to sink things you could have never imagined comes to the surface. Strength, love and hope!

Funny thing about doctors is they don't know everything. As I entered my 14th year with ALS I found my voice through blogging. Through the hell of the teenage hormonal years, living with a disability and finding the love of a good man, I had me a story. I write what I have lived and how it affects those around me. I use my chatty humor to tell a story I have been privileged to live. In most posts there is hope and I often use nature to express it. I see life so differently and I desperately want to share what I've learned.

My grammar stinks and I thank God everyday for spell checker. But I'm learning to express what I have lived through writing and poetry. I don't have any desire to be published, but I would give my right arm to have the fortitude to write my story as a novel (Jodi Picoult style, as seen through each characters eye's). In a way my blog is writing that novel but many relationships are left out (privacy issues). I'm going to take a few online writing courses, keep practicing using fiction and one day write my story. It's a daunting task with one finger but maybe with technology or a ghost writer it will happen.

What's my line? A deep appreciation of life.

Tuesday, June 24, 2008

A Surprise Garden

A wonderful elderly couple owned our house before we did. He loved his fenced in fruit and veggie garden out back. While she lovingly tended her flower garden out front. They were gently coerced from their home by their children. Between her cancer, winter snows and the gardening their kid's felt better if their parents moved to Washington to be near them.

Since moving here in October we have delicately handled the snow and looked forward to our first spring. I'm not a fan of the messy garden look which was my front view all winter. As spring started to arrive so did the flowers. WOW! It's a different yard everyday. I still find my anal side wanting to have order in the wildness of my yard but I can't deny its color. There are red, white, two pinks, yellow, lavender and multicolored rose bushes. Our ground cover is periwinkle and st. john's wart. I can't even name the different lilies, iris' and others.

Dave being a flower nut has added wisteria across the deck, an arbor with Chilean jasmine, four hydrangeas, geraniums, pansies, garden gates and his famous waterfall garden in the side yard. I don't see him much anymore but with the decks I can always find him. The orchard is scary to us because we're not sure how to care for strawberries, blueberries, plums, pears, peaches, red apple, green apple and 4 kinds of grapes. It's the birds, they're eating more than their fair share. Pruning and feeding...yikes!

We are happy to have a small veggie garden that is doing well. But we had no idea what we had back there and there is still a huge tree yet to figure out. We are finding veggies we did not plant too. I think we should just buy some overalls and put up a stand. In this economy we'd make a fortune. ;) How they put so much on a sloped 1/2 acre is beyond me. My side bar now has my whole home and I'll be updating it as often as I can. Enjoy our surprises!

Saturday, June 21, 2008

Sunday Scribblings - Prompt # 11

Write a short scene in which one character reduces another to uncontrollable sobs without touching him or speaking.

Eric slammed his fist angrily into the wall of the court house. This was crap and that judge knew it as he banged his gavel down in judgement of Eric. It was just a stupid hazing ritual that he and his frat brother's had done a hundred times without incident, until now. One of the new recruits ended up in the hospital from alcohol poisoning, so Eric, Tim and Ryan were being held responsible.

They had all three come from privileged families with top notch attorneys. Tim and Ryan got community service but Eric's adopted dad had their family lawyer draw up a special sentence request for Eric. They requested that Eric spend Christmas break with a local church group going to the Republic of Panama. The judge was more than pleased to comply but Eric felt betrayed and confused by his dad's actions.

Eric's dad calmly followed behind, waiting for him to calm down. As Eric turned back towards his dad he gave him a look that demanded an explanation. His dad took him aside to a near by bench and said "son this is not a punishment it's a gift." "Gift?" Eric shouted, "how is this nightmare a gift?" His dad gave him a one arm squeeze and replied "lets go home son." Eric knew by his dad's demeanor that this conversation was over.

Eric had been told he would be building a school and that is something he knew he could do. He had helped his dad build their hunting cabin. It was the thought of missing Christmas dinner and all of the festivities with his family. He was hoping to join his friend's in Aspen for some skiing. He simply could not understand the cruelty of this plan. Deep down he felt frightened for the first time in years as he said goodbye to his family. They acted as if he was going off to spring break for god's sake.

Tired and dusty Eric awoke from his seat on the rickety bus. There was a hot breeze blowing through the windowless bus as Eric gulped from his water bottle. He hid behind his shades as they entered the village. The smell was foul enough to make him raise the neck of his t-shirt over his nose and mouth. It was the eye's of the children running along side the bus that made him lower his glasses and take notice of the village.

Stepping into the crowd of begging children he had remembered the pain of hunger from the look in their eye's. He was too young to remember the village before he was taken away, but he had a few memories of his mother's face. He was told that he was found wandering the streets hungry, after his mother had died, when they found him. He tried to mentally see his life living in this village but it was impossible to imagine. As he moved about the village he realized what his dad had meant. This was a way to give back to his people and appreciate all he had been given.

He fell to his knees sobbing uncontrollably that his dad would give him such a gift. Photo Writing club Prompt choices

Wednesday, June 18, 2008

3WW - Write on Wednesday

Frequent -Open -Someday

Death teaches us how to live
acceptance allows us to forgive
We all must die in the end
be present and transcend.

Acceptance allows us to forgive
motivating us to really live
be present and transcend
creating adventure until the very end.

Motivating us to really live
death's frequent voice must give
creating adventure until the very end
treat everyone as your friend.

Death's frequent voice must give
open up your heart and live
treat everyone as your friend
someday you will comprehend.

Open up your heart and live
We all must die in the end
someday you will comprehend
death teaches us how to live.

(Forgive my haste, I forgot to use the words and had to re-do)

Where do you come to the page?

I have always come to the page in the moments before I drift off to sleep. I remember the rose blooms of that day or the way in which the wind melodically blew through the trees. It's a time for my mind to wind down in reflection.

Each morning I stumble (literally) down the hall to get my mug of coffee. Once I'm fully awake I make the return journey to my very special blog room. My room welcomes me with pictures I love, solitude and a view of the pines. It's a room all my own that allows me to get lost in time. My computer stands at the ready to take me on yet another journey.

I have a dream of one day owning a laptop so I can blog out on my deck's. I'll then let the page follow me on a whole new adventure.

1st photo Stock.xchng
Write on Wednesday

Friday, June 13, 2008

SS - Celebration of Love

Do you see the second rainbow?

I'm combining SS's prompt of "Guide" with Tink's June's Honeymoon Cruise. A celebration of love and weddings for June.

There once was a woman named Tammy who was very happy without a man in her life. She had sadly fell into the wrong man's arms one time too many. Marriage was a bitter word to her ears that thirteen years could not sweeten. Memories of a man's touch would invade her sleep but her solitude and intuition would guide her back to sanity.

Her intuitive guide had served her well in raising her daughter's and dealing with her ever changing disabilities. She enjoyed her own company and had the unconditional love of her animals to fill the gaps of time. There were her friend's, books and an old used computer but her knowledge of it could fill a tea cup. It was a challenge she knew she could master but it was frustrating. Her guide had warned her to tread lightly with this computer chit chat but old habits die hard when it came to men.

That's when she stumbled across Dave on the computer. Both were inept at IMing so their courtship swept them into a phone relationship. She had spent thirteen years learning to live without a man, thinking it selfish to love with als. He had spent thirteen years after rehab, healing, scared to date as himself. She tried scaring him away but instead he came back again and again. He was drawn to her strength, humor and connection to God. She was not as easily convinced due to her past and uncertain future. In the end his romantic, generous loving heart won her over.

Her head was spinning at the thought of being loved again, but when marriage was mentioned her past stood in front of her like a brick wall. They had each been down that road once before and had kids, but he was old fashioned in that way. He convinced her to scale that wall and trust that he would catch her on the other side. She said yes when he purposed on bended knee, at sunset, in an abandoned orchard on a hill. A table set for two, a picnic basket and Barbra Streisand serenading them from a boom box.

It was a beautiful sunset ceremony where they exchanged their vow's. She chose Tunnels Beach (Bali Hai) in Kauai for the wedding with just a singer, minister, four witnesses and a peeping sea turtle. She chose a wedding date she had always dreaded in those thirteen years of being single, Valentine's Day! She wrote the ceremony and they each wrote their own vows. It was intimate, romantic and surreal. After they stood at the water's edge giggling at their perfect day, a double rainbow had quietly appeared.

Their intuition guided them into taking a chance on love and each other. This is a story of hope, love and second chances. Here's to all the happy brides and grooms...cheers!

Thursday, June 12, 2008

Write on Wednesday

Write on Wednesday is back! This column once appeared regularly over at the Byline as a weekly look at the craft of writing in general. Write on Wednesday will appear each week throughout the summer, and this time we’re invited to participate by creating our own blog post using the topic of the week as a prompt. Becca can really write and I hope to learn more from her and others by participating.

PROMPT: Why In the World Do You Come to the Page?

I come to the page to express who I am and how I got here. It started as a fun project that I could do to keep busy during the day. I never thought typing with the use of only two fingers would last, much less alter my life. I was not able to work or even leave the house without help. My voice was fading and as I put my words on my virtual page my voice returned, transformed.

It was November 16th 2005 that I began writing. I had never kept a journal or diary but I was learning creative ways to communicate how it felt to be me. I started with simple writing of events, to haiku, to poetry, to prose and even fiction. It has taken on a life of its own that still surprises me.

I now can express my frustrations and yet inspire. I can speak from my soul and be encouraged. The pride in my husband's eyes is worth it all by itself but I've also been validated by people who's work I respect. When I am gone my family will really know me as I leave a piece of me behind. My journey is still expanding and I hope my writing will follow.

Wednesday, June 11, 2008

3WW - Change, Key, Dizzy

My new life in the mountains has been a much harder adjustment than anticipated. Getting out and meeting new people when you are in a remote area, not to mention disabled, is overwhelming. I'm going to get my scooter charged and meet me some neighbors before my bloom begins to fade. I've tried a cinquain this week with the rules below. Dizzy was hard to get in this poem but the definition I used was lacking seriousness; given to frivolity.


Forced seclusion

Change is key

Craving lost dizzy life


A cinquain has five lines. Line 1 is one word (the title). Line 2 is two words that describe the title. Line 3 is three words that tell the action. Line 4 is four words that express the feeling. Line 5 is one word that recalls the title.

Saturday, June 07, 2008

Sunday Scribbling - "My Night"

My real career began when I won the Apple Computer contract for my company. I had finally made it in a male dominated industry making really good money. The account was a 2 million dollar a year money maker so my company insisted on a seasoned account representative to handle my account. Apple Computer had wanted me instead so I was to be their account manager and my bosses had to comply. I had no experience in handling an account of this size but I gave it my all.

Not long after being awarded the job I was diagnosed with MS but my symptoms were slight and I hid them well. As i began to progress it became harder and harder to hide the fatigue and scabs from falling. My sales assistant, partner and good friend covered for me time and time again during those four years. I was a single mom and had to push through it all to keep my income. That third year I was forced to use a cane but assured my bosses that I could do my job with MS and I did.

When I got the news that I had ALS and not MS I knew that I had to retire. The doctors had given me a few years yet to live and I wanted to spend it with my girl's. My bosses understood and requested that I attend the company's year end hoopla so I could say my goodbye's to the other branches. It would be in the grand ballroom of The Hyatt Regency in San Francisco with about 500 people in attendance.

I didn't want to go because I had nothing to wear, no date and an ugly green walker (many had never seen me with it). I found a dress, grabbed a guy friend as a date and off we went. It was packed as we sat down to dinner purposely finding a spot in the back. After dinner the CEO of the company began his fiscal speech as I was finishing off my dessert. Then I froze in my seat as I heard my name.

Many in the room did not know of my new diagnosis or my retirement as my story was being revealed. My heart was racing as I slouched down in my chair not daring to look up at the many faces. The speech turned from my leaving to my accomplishments and I realized that in my short four years as an account manager I had really earned their respect.

The CEO ended his speech with how much I would be missed as everyone in the room stood up in applause. The crowd began to part, still applauding, as the CEO came down from the podium to present me with a dozen red roses. My knees were shaking as someone helped me to my feet, my face becoming beet red. I have never felt such a rush of emotion as I did that night looking into the endless sea of faces. It felt like I was receiving an Oscar as the ALS left my mind leaving me smiling from ear to ear.

When the speech ended I had a line of people wanting to say goodbye. The ALS slowly crept back in my mind as I saw the looks in their face's. I kept focused on not going into the ugly cry as people struggled and choked on their word's. The faces and hugs became a blur. My date instinctively knew what to do. He grabbed my walker and lead me to the dance floor. He parked it out of the way as we danced a slow song allowing me to catch my breath.

It was a night that I will never forget and job that I hated to leave.

The best night of course was my sunset Kauai wedding but on June 14th Tink is having a wedding celebration in blogland where you can share a wedding post. This post can be anything you want because it's in celebration of brides.

Friday, June 06, 2008

Writer's Island - "Unexpected" Fiction

She awoke to a blur of movement as she struggled to focus. She could hear voices above her shouting frantically but they sounded muffled to her ear's. Where was she and why could she not ask them what was happening? Usually she would be freaking out and joining in the chaos but she was surprisingly calm. This was not a feeling she was used to and it felt nice, so she closed her eyes to embrace it.

Gently shaken from her reverie she felt compelled to open her eye's as she felt her body rising. She could now see where she was as she looked down from her ascent. It appeared to be a scene right out of ER but without the familiar cast. As a nurse moved aside to grab something she caught a glimpse of a masked, naked and bloodied woman. There was something very familiar about this poor broken...holy shit! It was her! She recognized the bra and heart pendant hanging down the side of her neck. The rest of her body was obscured by doctors and nurses.

She caught a movement off to the right as she spotted Jim, her husband. He was pale and visibly shaken as he watched the horror scene before him. "Jim" she yelled but he could not hear her. "I'm OK, I'm right here" she tried again but to no avail. Then she heard it, that sound from every doctor show she had ever watched, a flat line tone. The chaos began to escalate as she felt herself moving farther away. She wanted to say goodbye to Jim and hug him just one last time but she was drawn to the peace of this unknown journey.

That's when she faintly heard the doctor yell at his team "we've got to get them back!" Them? I looked around and wondered who else was hurt. I fought to halt my ascent as I caught the shock on Jim's face. Jim asked frantically "what the hell is happening?" The doctor yelled over his shoulder "we are trying to save your wife and baby sir, so please give us room here." "What baby?" Jim asked. "Sir, your wife is pregnant" the doctor relied. The shock and horror on Jim's face had to be a mirror image of her own since they were told they could not have kids.

Something clicked inside her head as she fought the peace and willed herself back into the chaos. There was no way she was going to let her precious baby die, she was born to be a mom. Faintly in the distance she heard her baby's cry as she moved towards it with everything she had. When suddenly she felt a riveting jolt as the nurse yelled out "we've got them back."

Wednesday, June 04, 2008

3WW - "Transformation"

Photo by Dave

Deny - Smile - Uncomfortable


Locked inside her skin
safety warms her
bleeding heart
as self doubt

Uncomfortable on the outside
she turns on herself
emptying of soul

Love is a power she can't deny
as it draws her outside
confidence builds
making me

Sunday, June 01, 2008

Guess Who I've Been Kissing?

I've neglected my blog to visit my grandson TK this weekend. His mom & dad are now renting our other house due to the market being so bad. It's risky and surreal to rent to family and be a visitor in your own house. We do the big yard work when needed and Josh's dad has fixed what he could with us living so far away. In less than a month we've had plumbing issues, electrical problems and our 4yr old oven went out. Welcome to the life as a landlord! We are all pulling together so the kids can live on their own in this tough economy. TK loves his new backyard and having his own room.

It was also my baby's 23rd birthday. Can I be that old? Photo shopping my wrinkles is getting to be a huge project as I zoom in for the kill. ;) We sat outside and relaxed as Dave worked his butt off gardening. My daughter and her hubby had a BBQ and we brought a super yummy birthday cake. The in laws joined us for cake as we celebrated Jessy's birthday.

TK had not forgotten his gramy and my daughter took a few candid shots of us so I'd stop bugging her about sending pictures. I spoiled him and he taught me the flute. It was a great day!