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?