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/