3WW - Abandon, Gradual, Precise

This my last "educate it forward" and ALS Awareness post for May. I'll never stop educating ALS forward until there is a cure. ALS is is only a part of my life and I will never let it define me. I have lived most of my adult years living with ALS. 19 years to be precise and with this gift of time I must be a voice for my fellow ALS warriors, keeping my own voice, mine.

I walk with a walker due to bad balance and I have tight leg muscles (spasticity) which creates a gait. My gait, after 19yrs, has worn down knees so I use a cute scooter for stores and walks. My hands are curled like claws, leaving one finger left to type. Pincher's don't work but I still have a grip. My torso cannot help my weakened arms to lift me out of bed. Arms shake when lifted up, making it hard to get food in my mouth. I can't get too hot or too cold and my tongue muscles make it hard to speak so I sound drunk. I do not suffer at all compared to most ALS warriors.

Next comes choking and aspirating on food/saliva. Then I will be sentenced to an electric wheelchair. My neck will need a brace and I will need to be bathed and wiped on the toilet. I will over salivate needing suction and must be fed through a stomach tube. Sounds easy but it can get infected or leak stomach acid burning your skin. I will gradually become paralyzed and unable to speak. I do have a computer that is banking my voice now and will speak for me using my eye's. My mind will remain sharp but 10% will get frontal lobe dementia. Lastly my diaphragm will weaken, needing a bi-bap mask to help it function. This is when I will choose to die or allow a ventilator to breath for me.

I will struggle with not feeling like a woman, feeling like a burden and being abandoned. These feelings are ways ALS weakens your defenses, so I raise my shield and fight these emotions because I can. I will not give in to ALS until my last breath.

Now you know what it is, how many suffer and how they suffer. Educate it forward! Thank you!

Sunday Scribblings - Dragon

The dragon

lying in wait

would not go down

easily in the dark

but he was struck first

and weakened

surprised at the

fierceness of their hearts

as he was slain

in the darkness

of his lair. Later

gutted and skinned

his flesh cut into pieces

and shared. Now the fire

is in us: we are the dragon, the dragon's

strength is ours; we will live, free of dependence.

No more pain,and falls and wheelchairs for

we are made whole in our feast.

15 cases of ALS are diagnosed a day and most live 2-4 years. No time to fight and voices too weak to be heard. Do you know ALS? Educate it forward to be their voices.

Can I pull off a Meme Including ALS?

If I were a month, I'd be May which speaks of renewal and it's ALS Awareness Month

If I were a day, I'd be Monday because it's the start my week after a hectic weekend. I love beginnings.

If I were a time of the day, I'd be 10am because that's when I awake and have my coffee, in the fresh mountain air.

If I were a season, I'd be fall because my muscles have been worked in the summer and I'm strongest in fall. Bonus is the tree colors.

If I were a planet, I'd be Saturn because it's unique and beautiful.

If I were a direction, I'd be north keeping me close to God and I love Northern California where I live.

If I were a drink, I'd be a glass of ice tea w/no sugar. Gives me energy when my ALS tries to steal it away.

If I were a tree, I'd be a redwood living long and strong.

If I were an animal, I'd be a dog. They need you and give back unconditional love.

If I were a musical instrument, I'd be a guitar. It's held and strummed with passion.

If I were a fruit, I'd be a passion fruit. Sweet and colorful.

If I were a food, I'd be a pasta. Very versatile and energy boosting.

If I were a celebrity, I'd say Hugh Lorie because he's sarcastic and his mom died of ALS. He could really impact awareness.

If I were a color, I'd be red because it looks good on me, my hair and ALS color.

If I were a book, I'd be a romance novel because I'm a true romantic.

If I were a song, I'd be Stairway to Heaven, a high school fav sung by a crush.

If I were a movie, I'd be Pretty Woman or Dirty Dancing.

If I were a flower, I'd be Jasmine for the sweet smell and climbing vines.

If I were a facial expression, I'd be wonder. I'm in awe of nature and love.

3WW- Dread, Grasp, Pacify

Sara felt the sadness in the room like a heavy blanket, holding her down and unable to move. They all knew Sara had battled so very hard to beat ALS/MND and yet she had lost. The tears that trickled down the side of her face were not of sadness but they were tears of doubt. Had she done enough in her life to make a difference? Did she use her time for a greater good? How will she be remembered? Sara thought she knew the answers and yet no cure had come in time.

Sara's children were so consumed with regret because they thought they had more time. Sara had reached out but it fell on deaf ears of the childhood's that had been stolen. It was too late to pacify their fear's, all she could do is say she loved them with her eye's. Sara had to say goodbye using her computer that held her voice from the past. The Eyemax computer held just words and a voice long ago forgotten. Her children could not grasp Sara's forgiveness or of not having Sara's advice . Sara dreaded the grief that will change them

Then there was John who's love motivated her fight. No computer could touch the grateful love she held in her eye's. Sara knew her love had been equaled in his heart by his patience and loving sacrifices. They were given to each other for a short time but a life changing time, gifts from God to each other. He was proud and thankful for the gift of Sara but he knew this was her call, her time, on her terms. He would be okay and continue their fight to educate ALS/MND to the unknowing.

Sara drifted, remembering her living funeral, surrounded by her friend's and family. Their words and memories were still clear despite the haze of her morphine drip. As she took her last breath in this life, her eye's fixed on John's, she was slowly lifted into the next. Someone had said she was gone but Sara felt she was finally free!

Theme Thursday - Pets

His name was Manny and he was my angel dog. Manny was boxy like a black lab, had the soft face of a boarder collie and the curly ears of a cocker spaniel. He was five and had been neglected by a neighbor's son. The neighbor was a retired cop and brought the dog to his house. He offered the dog to me and my girls because he felt we needed Manny.

I had been told I had ALS five years before we were offered Manny. I was a single mom of two young girls, living in a rented house. The doctors gave me no hope or much time. I could not imagine taking on a dog. But Manny stole our hearts and even the landlord gave his approval. Manny was a good dog and he immediately knew there was something wrong with me. He was always at my side from day one, as I fought to survive ALS/MND.

An example of his wings are many but it was the first time he helped me that started our journey. One day I went to get off the couch and Manny jumped up from his nap to follow. As he sat on his hind legs waiting I had just made my fourth attempt to rise. Manny began nudging me with his nose but in my frustration I ignored his concern. I tried it again and failed when Manny barked at me, while still nudging. I asked him in a pissy voice "WHAT boy?" I saw concern and scratched his neck. He kept raising his head as I scratched and then I got it. I held the arm of the couch with my left hand and I put my right hand behind Manny's head. He was still sitting but he stiffened his neck and legs while I pulled. He held firm as I stood up and in that moment we were a team.

It's with a heavy heart that I must say Manny is no longer with me. He lived for seventeen beautiful years. He watched my girl's marry and even six years ago he gave up his side of our bed to my new husband. I am a very rare case of ALS because most die in 2-4yrs and I am nearing 2oyrs. Through all of my long day's, hormonal teens and falls. Manny's unconditional love remained strong. His ashes will be spread with mine as a tribute to our love and friendship.

15 cases a day are diagnosed with ALS in the US. 2-4 year mortality rate and there is no cure. Brain stops messages to muscles, leaving you trapped in your body and mind is fully aware.

One Single Expression - Tremble

Hope

optimistic faith

seeing the light

protected from trembling darkness

acceptance

Photo: My yard filled with a sunset's streaming light. I could see a perfect little tree basking in the last kiss from the sun. Do you see it? This inspired my cinquain for May's ALS Awareness Month. ALS is known in other countries as MND. (not a great shot with my camera but awesome live)

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

Sunday Scribblings - Recipe

I've been trying to raise awareness for ALS in May by turning prompts into education. This one was a tad hard but I never back down from a challenge.

Recipe for a Cure

Take a killer like ALS

And educate the masses

Add the ugly truths

Stir in the media

Put in faces of the stricken

And show their hope for tomorrow

Sprinkle with money for research

Heat on high for fast action

Serve ALS awareness in hearty helpings

To anyone who will listen.

15 new cases a day and they die so quickly few are left to fight. Lou Gehrig was a baseball player who had ALS but most don't know what he endured or even know who he was. Brain stops sending signals to EVERY muscle. Walking, eating, swallowing, talking and then slow suffocation ensues. No cure and ANYONE can get it from 16yr olds on up. Now ya know :)

Theme Thursday - Mystery

Sara awoke from a beautiful dream of running through a green meadow. Running until she was exhausted, falling upon the cool grass, watching the clouds play in the vast blue sky. When her reality sank in, she had a moment of sadness cross her face. But quickly she would put on her best face as she called for her husband, John.

John was usually awake earlier than Sara and had already enjoyed his first cup of coffee by the time she awoke. He said "good morning honey" in his usual chipper voice. "Morning" I replied groggily and unintelligibly. He pulled back the covers, exposing her lifeless body and kissed her on the forehead. "Ready?" he asked as he lifted her to her chair. He was very gentle so as not to pull on her catheter. Making sure the seat pad was positioned, her neck brace was okay, as they headed for breakfast. He poured a can of Ensure into her feeding tube as she sipped through her straw the liquid gold taste of coffee.

John had spent the next three hours dressing, bathing and making her feel pretty. Her computer went where Sara went as she used her eye's to speak, making sure he didn't miss anything. He would sometimes lose his cool or skip a bath when she wanted one but normally it was routine. Sara hated strangers coming in to do it but John needed a break from all of it regularly. He need a life too.

Sitting on the deck Sara would close her eye's, smelling and feeling life all around her, grateful to just be. She often said nature and man will find a way to uncover the mystery as to why the brain cannot get messages to her muscles. What caused that gene to be triggered? Her breathing needs a rest with a bi-pap machine during the day that she jokingly calls her Darth Vader mask. Sara had only been sick for two years but she felt hope in the breeze. Someone will solve the mystery of ALS.

I have ALS but this story is fiction. 15 cases diagnosed a day in US, there is no cure and most live only 2-4yrs.

3WW- Fear, Ignore, Weightless

REFLECTION

My heart is heavy.

I must put on a smile, for

Fear is wasted emotion

That pulls me down.

I feel muscles, wasting away

Under weightless armor,

Buffed in prayers, shining in love.

I know a cure will come one day,

Riding on a powerful steed.

I hear his gallop coming,

In the distance, slow moving

Carrying a cure.

A poem for May's ALS Awareness Month

One Single Expression - Reign

Clouds waltz across sky

dark to light casting shadows

spring struggles to reign

Powdered in winter

avalanches drop from trees

will spring ever reign?

We received another 5" of snow yesterday. All we can think of is spring.

Sunday Scribblings - Courage

Many think that having a terminal illness with no cure makes you courageous. It does in cases of ALS where the disease ravages your body quickly, until you are a prisoner, unable to move. Most people lose one ability after another until the end, leaving no time to do anything but survive one day at a time. I do think I was very blessed to have lived 19yrs with a disease that takes most lives in 1-4 years.

I never thought I was courageous when they gave me the bad news (assuming my time was short) because I had two little girls to raise. I HAD to survive for them, so I took them on adventures and taught them skills they would need later. I was honest, loving and asked a lot of them. I survived 13 years devoted to them and I was thrilled as they each graduated to adults. With a happy outlook at every progressive stage we lived live fully. Now they resent my living and moving away to the mountains(even though they are grown and married). They feel robbed of a normal childhood and I owe them to live close. Growing up in fear of losing me has effected who they are now (along with DNA). They love me but they don't get too close. The real courage is living without their appreciation or gratitude.

I thought I was most courageous, when my youngest graduated, in seeking a male companion on the internet, after 13 years living with ALS. I put myself and prognosis out there expecting rejection but instead found an amazing man. He loved me and married me, on a beach in Kauai, for the duration. He really has no idea how hard it may get but he has made a courageous choice. His courage made mine stronger and a blessing.

I guess I'm saying courage can be found in the big things and the little things. Everyday that we awake and start our day we are making a choice to live life fully and with courage. It may not turn out that way but we keep trying. We can reach out to someone in need, be grateful and love fully. That's courageous!

May is ALS Awareness Month, feel free to ask me anything.

3WW- Escape, Hum, Vibrate

Hope in Living with ALS

The dark, shadow of the reaper follows,

To remind, frighten, slink in the darkness

For too many, familiar faces; here and far

Living faithfully, hopefully and strong.

The heart of family, supports, lovingly,

The alone, grasp for support, seeking help

From the only ones willing to reach out,

Out, of the dark, as danger draws nearer.

And their voices vibrate in gratitude

As they hear God's voice humming in their hearts,

Assuring them of his presence and light.

When the cure comes, willingly, they escape,

Reapers path, for now, and life can reshape.

My first Sonnet and written for May's ALS Awareness Month.

Dedicated to my fallen warriors Helen and Pam.

One Single Expression - Enigma

What is ALS?

all your muscles cease to work

Who gets ALS?

anyone and often

a silent enigma kills

A Tanka for ALS, I hope I used it right. Educate it forward :)

Sunday Scribblings - Event

I had been sent to UCSF after 4 years, 5 doctors and a Multiple Sclerosis diagnosis. I took the MS diagnosis seriously but my symptoms were slight I simply went on with my career path and being a single mom. The last doctor did a new test (EMG), on my first visit, and said "I don't think this is MS Tammy." I was relieved and asked "then what do I have?" She had said that she preferred I go to UCSF before giving me what her suspicions were. Relieved, I grabbed a girlfriend for a fun day in San Francisco.

I sat on the white paper, covering the exam table, when combined with my HUGE paper gown made loud noises every time I moved. The room was tiny and I felt it getting smaller as I grew impatient. UCSF was apparently a teaching hospital so I was examined for an hour by a resident, then an hour by the head neurologist. My poor friend was still in the waiting room as I grew anxious to get this done.

They came back into the room together. I noticed the young resident was more serious and had a hard time making eye contact with me, as he shrunk into a corner. I found it funny to see his demeanor change in front of his boss. The head of neurology was not scary to me but he was very gentle and caring when he spoke. He said "Tammy, after examining you and your previous records we have concluded that you don't have MS, you have ALS."

All I heard was no MS but when it sank in I asked "so is there a cure for ALS?" and he looked down and said softly "no, there's not." "Will I get worse?" I asked anxiously. He replied reluctantly "Tammy, ALS is a terminal illness." My mind could not connect no cure and terminal but my body did, as I felt flush with anxiety. I looked him in the eye and strongly asked "how long?" He said "that's hard to say, but based on the last 4 years you have 7-10 years, including the 4 years." My mind raced like a fast moving slide show. Jumping from my young girl's, to an unfit ex-husband and my career. I took a long deep breath.

Looking at the very uncomfortable resident, then back to the doctor I blurted wearily "how will I die?" My new doctor, who I found out later was an ALS specialist and would get ALS in 2004, tried to avoid that question. I said "listen, I have two young girl's at home that need me, so I need to know now how this will go." He again reminded me that I was given a lot to process and on my next visit we can discuss questions. Almost too calmly I said "no, I need to know now."

All he would say is all my muscles will weaken making it hard for your body to function. I'm not sure what I said after that or even what he said, but I found my body went through some sort of acknowledgement and goodbye. I went to get my friend with mind racing and body moving on its own.

I said "I'm so sorry that took so long" and she jumped up asking "well?" I must of looked zoned out but said sarcastically "well it's not MS" and she smiled saying "what a relief." As we walked down the hall she said "Tammy, where are you? anxiously she asked "what did they say?" I replied calmly "I'm going to die."

I insisted on driving home, an hour away, but I don't remember the drive or anything I may have said in the car. I needed to figure out how to tell my babies, I needed my babies.

May is ALS awareness month. I chose to write about my biggest life changing event, but I'm happy to report this event happened 15yrs ago. 15 cases of ALS are diagnosed every day in the US and most live only 2-5yrs. You become trapped in your body, losing every function except sight. Your diaphragm will, in the end, cause you to suffocate your mind fully aware. I'm on a campaign to have my friend's pledge to educate one person who does not know ALS. Having that friend educate it forward. Do you know ALS?

3WW- Depart, Ignite, Rotten

Everywhere

the daffodils

bow to springs last storm

and are waiting



for the sun to ignite.

All day

in my warm and cozy impatience

of our long winter



I'm watching them,

green stalks bending

heads laying down,

their petals


swaddled like a babe

learning to trust,

lying on the ground.

I have only one thought



when will the sun arrive.

I wish for them

to rise

the snow to depart



like a phoenix rising up

through rotten ashes

awaiting

the rebirth.

Northern CA is having a very long winter. I wrote this while drinking my coffee this morning, watching my daffodils through a light snow.

One Single Expression - Fissures

Goddess

nurturing woman

tending springs promise

weathered fissures hold strong

beauty

A Cinquain by Tammy

Sunday Scribblings - Dinner

When I met Dave he had been a 13yr bachelor that disliked cooking. Spaghetti, his fresh caught fish, frozen dinners and beef roast over rice was about it. When it was nice out on a weekend he would get distracted and coffee was all he ate until dinner. Let's just say eating and cooking are chores to Dave.

Saying "I do" six years ago spoke volumes about his love and bravery. I'm thinking his love blinders painted a marriage picture that was romantic and doable but not very close to reality. This is where the high maintenance, disabled wife shatters his cloudy reality. We had both been in control of our own domains for 13yrs before coming together. Neither liked being "asked nicely" or as Dave says "told what to do." Men and women just hear differently.

Making dinner was made, in the beginning, together as a team. All kissy face and eager to please, so I took advantage of that time to teach him cooking 101. That time ended somewhere in the last six years into a battle of wills. He grocery shops so he thought he could slide back into a hasty, cook on the fly routine. I felt I needed to just be grateful, yeah, that lasted about 10 minutes.

I'm a list maker, he is not. I plan meals, he does not. I need variety, he does not. I had to approach this delicately. I made a list of planned meals but over time he got frustrated with my illegible writing and he wrote my list. ;) Then I'd find recipes and figure out how to add veggies and make short cuts. Anything with over 20min prep was a big no no.

In the early stages of my on the sly training I ate anything he made. I said yum even if I wanted to gag because the teaspoon/tablespoon thing took awhile to catch on. He now can handle "advice" on forgotten ingredients but god forbid if I go in the kitchen to verbally help. That's being bossy which I have discovered is how he take most "advice."

I'm happy to report we have developed quite the repertoire of easy dishes and frozen dinners are a rarity but he still dislikes the whole shopping/cooking thing. He is more confident in the kitchen and on the grill. That's a win win in my book.

Sunday Scribblings - Wonder

I can't believe I took such a long blogging hiatus. I was sucked in to the ease and fun of Facebook. Many of you are there but I have missed many others. Not to mention being creative with poetry and journaling.

Wonder is an emotional feeling of awe for me. This winter I saw such bad behavior in people I love, the recession steal our retirement away and the loss of a dear friend to ALS. The wonder is not disappointment, shock or extreme grief, but of wonder on what came from it all.

The people I love I have chosen to love and I will not change them. I simply put new boundaries in place that will keep drama at a minimum. I feel like my journey has given me a 6th sense to stay focused on the wonderful gift of being loved and here.

When I see this man I wonder how he does so much with a smile and patience. He retired at 50 to be with me, but instead he now takes care of me, the house and is a full time custodian job to keep up with two mortgages. The housing market is still really bad here. He worries about my isolation and health but keeps being positive. He is extending the deck for a hot tub so I can have warm water workouts. He fills me with wonder everyday.

With the sudden passing of my dear friend Pam aka Batman, to my Robin, I was saddened and filled with wonder at the same time. She left this world on her terms and peacefully. I have let go of fears about death but it was a huge wake up call. I wondered why her and not me? Why I have lived 19yrs and can still walk when most live only 2-5yrs? My purpose became clear in my grief or Pam whispered in my ear, educate! I HATE fundraising and I'm frustrated with how many people don't even know what ALS is. I came up with "Educate it Forward." One person educates another about ALS and that person shares it forward. We have Croatia, New Zealand, Australia, Singapore, Philippines, London, Paris, Canada and the USA on board. Info is in my profile.

It's a wonder how much good can come from bad.

One Single Impression - Shift in Time

Summers hand brushes against fall

taunting fall with her fading colors

he takes her into his arms

swaying in the wind

blending as one

shifting in

time

http://onesingleimpression.blogspot.com/

My fall photo

Sunday Scribbling - Adventure

In my forty eight years I have had many adventures that were fun and exiting like camping, fishing and traveling. But my life adventures are the ones that have shaped who I am today. Marriage, giving birth, divorce, being a single mom, death of loved ones and my journey with ALS are the adventures I treasure.

My life adventures have taught me about love, real friendship, priorities, appreciation of all life, acceptance of death and my own inner strength. I had no idea of what I was capable of until I was tested in ways I could never even have dreamed of. I now believe trials are a gift that push us to be better human beings and can inspire others to accept their own trials.

After beating the odds of an incurable disease I have realized that in a way technology has become a cure of sorts. The adventure of researching and networking my illness has given me a better quality of life. Learning how to use a computer that will bank my voice and type/talk with just my eyes. A lift chair recliner that gives me a gentle hand up. wheelchairs, shower stuff, bidets and eating utensils. The new Diaphragm Pacer that will expand your diaphragm for you so you might not need a ventilator. With new technology I will retain my ability to chose my life adventures.

I have lived to watch my baby give birth to her baby. Built a team to help others like me to live until a cure, got my first tattoo (heart of a warrior), won a gold in the Pan American trials for disabled sailing, I have a pool in my garage, created a dream home in the mountains, and I met and married a wonderful man (online) that was willing to join me on more adventures to come.

Zipline and disabled skiing are next but my future adventures are endless!

Tammy'Warriors raised almost $5000 this year and my Dave will be spotlighted in November for National Family Caregiver Month on the ALS website. :) Pictures of 2009 walk are below.

http://sundayscribblings.blogspot.com/