Sunday, October 18, 2009

Life With Parkinson's in my 40's- #27 Feeling Sorry For Ourselves Are We?

I decided to write away  my anguish and self-pity today.  It's anguish that creeps up when I let my guard down or rather when I forget how blessed I am.  It's self-pity that turns me into a whining, crying less than dignified me.  The disease, Parkinson's (I almost typed 'my disease', it is not my disease) is trying once again to spread and gain strength.  I feel confident, almost, that this is another misunderstood set of symptoms and that my usual 'diseased state' will re-emerge.  It is a disease that is so misunderstood and not understood that the uncertain and shifting faces of PD will most likely never be revealed or explained.  It is my opinion that a disease that slowly steals your body away from your living soul is as unique to each soul who is 'lucky' enough to experience it as each physical body is unique.  God created our bodies to house our souls so we could gain experience and knowledge and wisdom.  Each body is as unique as each soul is unique. Thus we handle disease differently.  We handle life differently.  See where I'm going with this?

This past week I have had to forgo many activities because of PD.  It's not that I want to hide away.  My hands don't move when my brain tells them to.  I cannot smile.  I cannot stand up straight.  I cannot sleep.  When I do sleep it is full of awful dreams that leave me more exhausted than when I went to bed.  These outward physical appearances are hard for most people to watch or recognize or understand.  It is tiring explaining it to one more person and watching their reaction or trying to soften the blow  when they realize what I'm talking about.  God has blessed me with a few friends and family members, however, who do understand and know how to get through the awkward situations with everyone's self-esteem and happy moment still intact. 

I really miss the spontaneity of life.  Once in a while I have a spontaneous experience and I savor it.  Writing is like that for me.  Right now, my fingers are working so I'm writing (typing that is).  For now, that has to serve as my spontaneous moment. 

To all my dance friends, I want you to know that I relish every moment of dancing with you and sharing that part of us that we all love- dancing.  It is what has kept me going for some 6 years now since I was diagnosed.  Unless there are chemicals somewhere, dancing nearly erases all my PD symptoms.  The music, my perfect dance partner, and good friends who understand my desire to dance all feed my brain with PD fighting food.  Thank you for that.  You'll never know really how much you impact my existence for good.
To those of you who have answered my call to dance 'Something in Red' and 'Takin a Chance on Love'...thank you, thank you for giving me the experiences I have dreamed about.  I may never have another chance to experience something like that again.  Never take for granted the moments here and now when you can do whatever you want to do.  I will treasure the memories and the videos of these days and months we spent learning to dance as a group.  I can only hope I will be granted more time for more dancing.....

So, I'm feeling a little better, a little less whiny, a little less picked on.  Let me tell you what I have to be thankful for-
You all know what a wonderful husband I have.








 I have 3 beautiful daughters and 1 beautiful stepdaughter.  My two oldest girls are married to 2 perfect sons-in-law.  I have 1 perfect grandaughter.  And I have 1 sweet, wonderful son and 1 exceptional stepson.


























I have a lovely home and friends like you.  I live in this amazing land of America where I can exercise my freedoms and God given agency.  I can walk, talk and dance.  I can see, hear and taste.  I have great parents and siblings, even though some of them don't know it.

I am blessed.  I feel even better.  PD is fading into the background again.  It's all good.  Thanks for listening.
Life goes on. Tomorrow will be better. 

A message to end with-
Saint Theresa's prayer;
May today there be peace within.  May you trust God that you are exactly where you are meant to be.  May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you.  May you be content knowing you are a child of God.  Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love.  It is there for each and every one of us.



I was blessed to capture this sunset over a foggy San Francisco bay with my camera.  My friend Patricia tells me 'I am out of this world' to have captured this picture!  This picture has come to be my beacon of hope in a new day.  I have faith the sun will rise again for everything and for everybody....in time,  in time.   I will savor today and hope for more time....

Oliver at our house

            We are watching Oliver, Clair and Chad's newest family addition, while they are in Monterey with the Bringhurst clan.  He loves the backyard but is missing his family I think. 

He loved a walk around our street with Ariana.



Saturday, October 17, 2009

My Gutter Adventure

I have discovered that during my life there have been times when, for some reason, the events have been written indellibly in my brain.  I think about them like they happened yesterday.  It is a strange thing to me that I can ponder an experience for 40 + years.  I have also realized that these experiences always have to do with one or more of my senses like taste, smell, hearing (like music), or a very strong, unmistakable emotion or sensation. 

This writing is a memory I have of two separate incidents when I was quite young, probably only 4 years old. The effect of the experience has not dulled over 40 years. I feel it like it was yesterday. I needed to write it. I've made some corrections and added pictures.    My Gutter Adventure.....


My restlessness grew stronger with each passing minute. I could wait no longer. Outside the sky was dark. I felt its electricity pulling me like a magnet. Confinement to the house during a summer rainstorm was torture. I was a captive in my own house, an excited steel ball jumping and jerking to meet the drawing force of Mother Nature. At last I broke my bonds and like a slingshot I was through the front door and heading straight for the large gutter that lay between the sidewalk and the street in front my house. A wide, deep gutter accommodated the heavy runoff from storms such as these. During good weather, the gutters were a daily annoyance as the family car slowed to a crawl and rolled across it avoiding damage to the bottom of the car. When it rained, the gutter’s intended purpose became evident to adults as it took the storm waters to the drain at the end of the street. To me its purpose was different. The storm reminded me of it again. I stopped suddenly but briefly to contemplate what was before my eyes. I saw wonderful, warm water gushing, bubbling before me heading for some unknown destination, perhaps to another little girl’s house. It was here in front of my house. I would not let it go to waste.


Off came my Sunday shoes! Off came my Sunday dress! I absently deposited them on the driveway as I flew to the glorious sight in the gutter. With my clothes forgotten, everything and everyone forgotten, it took only seconds before my imprisoned soul immersed in the rushing water.
I lay on my stomach with only my nose and eyes peering above the water. The gutter was a perfect depth to accommodate my size. The unusually strong current rubbed and scrubbed every curve and bony protrusion of my little body. The water was foamy with warmth as I let it swirl around my neck and jaw. I was alone in my safe, warm place. It made me happy!
As I turned over on my back I looked above me, my body still buried in water. I had to press down with my palms to keep myself from moving along with the water. The air was dark and heavy. The storm-clouded sky seemed so close I could pop one of the clouds with a simple splash from my foot.


 I was comfortable and complete in my underclothes, lying in the warm water, learning about currents, gravity, and stormy skies.
KABOOM! ! The ground shook beneath me. KABOOM!! FLASH!! The sound of thunder mixing with my excited senses fully enveloped my brain. I laughed loudly and lay deeper in the water.
The lightning confirmed the message of the thunder.
“I am warm and powerful. I will leave water in your gutter. Come and play.”
I was not afraid of the thunder and lightning. Down came more water from the clouds just above my head. It, too, was warm and I welcomed it into my gutter.
KABOOM!! FLASH!! FLASH!!
“Siiiiiiii-ster!” called a voice.
The voice floated towards me from a distance. As it mixed with the sound of rain, rushing water and thunder, it could not penetrate my storm world. I did not move my eyes from the clouds.
“SIIIII-STER!” It came again. It was closer, breaking through my watery shell.
Suddenly a face was in my cloud. It was my mother. What was my mother doing in that cloud?
“Sister!” What are you doing?
Her voice was still not reaching through my warm, wet place and into my ears. She tried again.
“Sister! What are you doing out here?
“What a silly question”, I thought. “Wasn’t it obvious?”
Before I could speak, my mother had me by the hand, pulling me from the gutter. She hurried me towards the house, picking up my clothes along the way.
“Sis, it’s dangerous outside in a thunder storm. You are lucky you were not struck by lightning. You are also lucky, young lady, that we have all ready been to church. Your dress won’t be fit to wear again today,” she stated all in one breath.
I was sad that my gutter would be without me now. The water was warm but the walk to the house gave my skin a dose of cold shivers as the stormy air blew through my wet hair and into the skimpy, wet clothes that clung to me. I did not mind my mother’s intrusion long as I started to shiver in my underclothes. The inside of the house felt extra warm and inviting.
I suddenly had an important thought. I spoke aloud without realizing it.
“What is ‘dangerous’ and why would the lightning ’struck’ me?
My mother’s face became serious as she thought. I guessed she was thinking about ‘dangerous’ and ‘struck by lightning’.
“It means that sometimes moms get scared when their girls don’t stay in the house during storms. What am I going to do with you, my funny girl?” she said with an affectionate smile on her face.
I looked at her face trying to decide if she was angry with me. I decided she was not. She took my hand in hers and off we went to find a dry spot for my puddles.
____

I awoke with a start as a loud ‘BOOM’ echoed from my sleepy mind. I could not see anything. I put my hand up to rub my eyes and I could not see it. My hand was lost in the dark of my room. I now remembered I was alone in my bed in the basement. The basement got this dark during the night sometimes. ‘BOOM’! I flinched with the sound now. From somewhere in my room mixed with the intermittent ‘BOOM’, I heard a chilling, evil laughing. I froze on my pillow, terror filling my mind. I shut my eyes, not wanting to see what might be in my room. Would I be able to see it in this dark? Peeking open one eye I now saw light coming from somewhere. Surprised, I opened the other eye. I realized that the light was close to the ground so I sat up, not letting go of my blankets. The awful, laughing thing seemed to be part of the light. I studied the source of the light and decided that it must be right by my bed. With some light to give me confidence, my terror warmed into fright that calmed into careful curiosity.
“This was my bed, after all.”
I leaned to the side of my bed and stretched my neck and eyes as far as possible to see what might be beside my bed without actually getting too close. I did not see anything. It must be under my bed! My curiosity was strong. I leaned my whole body over the side of the bed that was not against the wall. As I pulled the blanket up from the floor, more light poured out from under the bed. In the center of the space underneath my bed was the source of the light and the awful laughing sound. Fear and curiosity mesmerized me. A puppet with a tall, purple, pointed hat was looking at me. The pointed hat had yellow stars on it. The stars seemed to look at me also. The puppet had dark, menacing eyes with pointed eyebrows that accentuated the evil laugh. It had short, stubby arms and hands and no feet. The light appeared to come out of the puppet’s cruel, laughing mouth. I decided the light was not light but rather a kind of magic mist that the puppet had used to trick me. It wanted to scare me.

Now I knew a person’s hand controlled puppets. I had seen a puppet show somewhere. No one was holding this puppet! It was alive and lived under my bed! The instant this realization formed in my mind, the puppet seemed to grow and wanted out from under the bed! I let out a scream, a long, terror-filled scream!
BOOM!! My bedroom screamed with me.
My head hurt. My stomach hurt.
“Someone help me. Don’t let the puppet get me!!” I wailed in utter terror.
I tried to scream again. Instead of words coming out of me, vomit spewed out all over my blankets. The puppet had me. His little, stubby hands were shaking me.
“Sister. Tracy. Wake up.”
My mother gently rocked me back and forth with her hands until I opened my eyes. It was not the evil puppet! It was my mother. Out came more vomit. My mother jumped up to avoid the yucky stuff.
“I think your gutter play today was not so good for you. You’re sick”, she said with concern in her voice as she felt my head.
BOOM!! We both jumped at the continuing thunder.
“Aren’t you glad you’re not out in the storm now? It’s a bad one.”
At this moment, my mother seemed very wise!
“Oh, honey, you are burning hot. Let’s get you out of this mess.”
Obediently I let my mother take me upstairs and clean me up. I was so thankful for my mother who knew how to make me all better.


After some time I found myself crawling wearily between fresh sheets on the bed upstairs in the spare room. My mother tucked me in, felt my head again and kissed my hot face as I drifted into sleep. This time it was free of puppets…

Sunday, October 4, 2009

Life With Parkinson's in my 40's- #27 Life Goes On

This post is in honor of my grandaughter, Brielle Tandy, who is turning 1 today! Being a grandmother still seems very odd when I say it. But when I see Brielle and what a beautiful, sweet spirit she has I am so happy and comfortable with the title of grandma. Having PD at a younger age has definately impacted all aspects of my life. And being a grandma now I think about how my grandchildren will perceive me. I don't want them to remember me for PD but for who I am. Therefore, it is necessary for me to dwell on the things I can do for my grandaughter and not the things that I cannot do. On my last visit I crawled up the stairs with her, played on the couch with pillows with her (her favorite thing), and sat on the floor with her. She is so precious, just like her mom and dad. They are wonderfully patient parents. So for her birthday I am making her a red velvet dress for winter and I recorded this video for her mom to show her. These are things I can definately do for her without too much difficulty. Life goes on in spite of my age or illness. And it is a good life; especially with a grandaughter as beautiful as mine. Happy Birthday Brielle. Grandma loves you