Loss

I love when my life gives me a story so hilarious that I have to put it on paper. But no matter how much I looked for humor in this past week....there was little. This was a sad week. Booooo

If I had to pick a theme for the past year and a half of my life....it would be Loss. Losing a friend, a lover, a dream, some of who I've always been. The universe is slightly cruel because it must realize by now I am really bad at loss. And I have managed to do really well in spite of grief because I have a career I love, and two precious children and so many friends and family around me all the time. But still....

As I think back through my life about my earliest feelings of loss...I struggle to find something solid. I don't remember feeling specifically like something was gone from my life. I remember being scared in my room at night sometimes. Imagining an angel sleeping beside me. If you ever read "The Littlest Angel"--the tiniest angel crawls into the lap of this beautiful older angel who comforts him. I would picture that beautiful comforting angel holding me to sleep.

I had an attachment to a silk pillow as a very young girl. In a moment of prodigy creative genius I named it "Little Pillow". I once left it outside in the rain and begged my mom to go find it. She did. So I got my pillow back.  Soggy and dirty...but no more sad.

We moved to a new house when I was 9. That was hard. Growing up in the Highlands as a child was incredible. The homes were close together and full of kids. We'd run through each others backyards all summer long....it was one giant playground. The new home was big and beautiful with a huge yard. But the houses were far apart and there weren't many children nearby. But I still don't remember too much grief over leaving the neighborhood I loved.

There was a moment when my brother and I were playing in the dirt as our new home was being built. There was a baby bird on the ground. The trees had been cut down so there wasn't a mommy bird. We tried to build a nest on the ground in hopes of the momma finding him. I was young enough to hope...but old enough to not hope too much. When we drove away I felt incredibly sad because there was nothing I could do. The unknown felt really scary because deep down I was aware that the bird was going to die.

So maybe that's it. Maybe it's not so much about the loss of someone or something but rather the loss of control. The gaining of uncertainty is hard.

And then there is the excess love with nowhere to go. I wish I had some magical gorgeous wood bureau where I could store my love for whatever is lost. Like a silk scarf or a comfortable quilt, tuck the loss into neat square folds. Put it in it's proper drawer where I know it is safe but stored comfortably most of the time. A place where I can drape it around me at moments to remember....and then kindly and purposefully place it away.

Maybe that's it. Maybe it's the extra weight of something with nowhere to go. Something the wind keeps blowing in your face. A loose hair that won't stay tucked behind your ear. A cry outside your window with no source to be found.

Regardless I realize loss is simply a part of life. I'm not sure I will ever get used to it. Who does? I just hope to learn to coexist with it a little more peacefully.

Michelle's Book Foreword

I see a skinny smiling girl with long blonde hair swimming around in my neighbor's shiny grass. She is laughing and flirting and I think she is probably the same as me--three or four years old. I wonder if she has words because she won't say anything back to me no matter what I say--she just keeps rolling around in the dewy yard laughing and smiling like she has the best secret in the world.

That is my first memory of my best friend, Michelle, imprinted in my mind like a really peaceful dream--hazy and happy. I can't help but think of the irony of me writing a foreword for her book. At the young age at which I met her, we didn't have the language, the words, to communicate fully. And here we are as adults, conveying finally in this book, those precious secrets of a giggling girl rolling in the grass.

 ***

Snow days mean sledding! Michelle's father warns us to not go near the ice-covered creek at the side of the hill. Michelle holds the reins at the front of the sled. I man the rear with my arms around her waist. After her dad gives us a push down the hill, I hear Michelle giggling; I realize we are veering toward the creek. Shrieking as we get closer--half horrified, half excited--I brace myself for the flight over the creek bed where we land head-first in ice-covered water.

 At Michelle's home, we are stripped out of dripping wet snowsuits and wrapped in cozy blankets by the fire. Playing with our dolls, we drink cocoa with marshmallows until it is night, and time for me to go home.
 
A few years ago, Michelle and I visited her father who, at the end stage of Huntington's disease, resides in a nursing home. We laughed and recounted that memory to him and in spite of the catatonic state he appeared to be in...his eyes lit up...crinkling into what I know was a smile in his eyes. Broken rules can make magnificent memories.

***

Huntington's is a genetic disorder which carries a 50/50 risk for inheriting it if you have a parent with the disease. Michelle knew for a long time she was at risk for Huntington's because of her paternal grandmother's diagnosis. And then her father's.

She was always a bit of a wild child. I was slightly more shy. The perfect yin to my yang. Childhood was one adventure after another. On one family vacation as teenagers, we swore to her parents that we would stay together on the beach until curfew at dark. Of course we lost each other almost immediately, choosing to kiss boys on the boardwalks. Upon realizing we were late and lost from each other--we raced home separately. I walked in the front door first...swearing to her parents that Michelle was just behind me knocking off sand. She ruined the story mid-way through by running in the back door breathlessly. We lived large together.

Michelle graduated college in three years. At 21, she biked through Africa and almost crashed into a cobra. She met a man at 22 and, one month later, moved to Nashville with him. She jumped out of an airplane. Learned to scuba dive. Switched careers. Got married. Traveled.

And was told she had Huntington's.

Looking back, I believe that from the beginning the author was gifted with wisdom and fearlessness. Perhaps the universe blesses those who will carry heavy burdens down the road with illumination on living. On getting the most from life.

She wrote most of this book after she was diagnosed but before there were visible symptoms. The amazing thing about this book is that the story after her diagnosis continues to be so unfair.

Once she had written the book and became symptomatic, her husband left her. She also had to resign from her high-level advertising position because she could no longer do it. She gave up driving and dating.

But she also travelled to Nepal, climbed Mt. Everest, visited Vietnam and hiked the Mont Blanc trail in Switzerland. She volunteered in Haiti, after the earthquake, for 2 summers in a row at an orphanage and decided to sponsor her favorite, special needs child named Rachel, by sending money each month.

Despite the continued hardships after her diagnosis, she still never felt sorry for herself or changed how she lived which gives so much credibility to the tenets of this book.

Today I drink coffee with a beautiful woman with shiny blonde and silver hair. She has entered the middle stage of Huntington's which means difficulty walking, talking, uncontrolled movements and cognitive impairment. She is throwing her head back laughing although she has lost the words to fully express her joy or her sorrow. She has asked me write the foreword for the book she wrote years ago when she had language to capture her wisdom; her learning from living with the presage of a terminal illness that slowly strips away your life until only your essence remains.

This book teaches how to embrace your essence and thus, happiness. Michelle's is beautiful and fearless. And fearlessness is a magnificent teacher. It doesn't always mean breaking rules. It can be breaking out of our molds or habits. Building the courage to show exactly who we are to the world. Or tougher yet, showing who we are....to ourselves.

So many people get to the end of their lives with regrets on how they should have lived. The blessing of being diagnosed with a long-term terminal illness is that it provides a motivation to live more abundantly. And it teaches the people watching close up, like me, to change how we live.

Meet Michelle. Be happier.

Moving Forward into the Foreword

This is part 2 of the foreword--DRAFT. Why people should read this book. Why Michelle is equipped to share the message. Here goes....

Fear prevents us from living. Fearlessness is a magnificent teacher.

For two eight-year-olds, sledding was the highlight of a surprise snow day. Michelle's father emphatically warned us to not go near the ice-covered creek to the side of the hill. Michelle held the reins at the front of the sled. I manned the rear with my arms around her waist. As her dad gave us a push to start, I realized we were veering toward the creek as Michelle giggled. Shrieking the whole way, half horrified, half excited, I braced myself for the flight over the creek bed where we landed head-first in ice-covered water. No more sledding that day.

Stripped out of dripping wet snowsuits and wrapped in cozy blankets, we played dolls and drank cocoa with marshmallows by the fire. A good end to a day made thrilling by an icy creek.

A few years ago, Michelle and I visited her father who, at the end stage of Huntington's disease, resides in a nursing home. We laughed and recounted that memory to him and in spite of the catatonic state he appears to be in...his eyes lit up and crinkled into what I know was a smile in his eyes. Broken rules can make amazing memories.

But living fearlessly doesn't always mean breaking rules. It can be breaking out of molds or habits. Showing who we are to others. Oftentimes revealing who we really are....to ourselves.

So many people get to the end of their lives with regrets on how they should have lived. The blessing of being diagnosed with a long-term terminal illness is that it provides a motivation for living more abundantly. And the blessing for those who embrace their sick loved one is that we begin to live differently and without fear.

Fearlessness is a magnificent teacher. This book invites you to hop on the sled.

 

Capturing the Essence

My last blog post was named "Before the Forward" but in googling how to write a "foreword" I discovered I had misspelled the word. But how perfect the word "forward" was for that particular post because I needed to spit out the venom inside me regarding Huntington's Disease in order to move ahead, to focus on the learning and inspiration that hardship brings.

And so I am propelled forward to writing my chapter for Michelle's book.

Paragraph 1--DRAFT

I see a skinny smiling girl with long blonde hair rolling around in the shiny grass. She is laughing and flirting with me and I think she is probably the same as me--three or four years old. I wonder if she has words because she won't say anything back to me no matter what I say--she just keeps rolling around in my neighbor's dewy yard laughing and smiling like she has the best secret in the world.

That is my first memory of my best friend. It is imprinted in my mind like a really peaceful dream-hazy and happy. I can't help but think of the irony of me writing a Foreword for her book. At the young age at which I met her, we didn't have the language, the words, to communicate fully. And here we are as adults, conveying finally in this book, those precious secrets of a giggling girl rolling in the grass.

Looking back, I believe the author was gifted with wisdom from the beginning. Perhaps the universe blesses those who will carry heavy burdens down the road with illumination on living. On getting the most from our lives.

39 years later, I am drinking coffee with a beautiful woman with shiny blonde and silver hair. She is in the moderate stage of Huntington's disease which means difficulty walking, talking, and uncontrolled movements. She is throwing her head back laughing although she has lost the words to fully express her joy or her sorrow. She has asked me write the foreword for the book she wrote years ago when she had the language to capture her wisdom; her learning from living with a terminal illness that slowly strips away your life until only your essence remains. Hers is beautiful.

This book teaches how to dig into the essence of who we are and live authentically--taught by someone who knew no other way to live.

I love you

June 2013

I told someone I loved him who doesn't love me back.

And yes, I chose the lamest method of communication that exists currently--the phone. Worse...a text. Yes, it flies in the face of all expert advice regarding "I love you" etiquette. But I know he doesn't love me back. So why set myself up for face to face rejection? I settled for virtual rejection. But I had to do it. Even though it hurt. Badly. Knowing I wouldn't hear it back. And then not hearing it. Pain down to my fingertips. I'm glad we weren't face to face honestly. And the words do mean as much. I still don't regret.

I walk around telling people I love them all the time. I appreciate the people in my life. I love them in a million different ways. I want the people I care about to understand that I value them, that they are special to me. That they are special period. Literally, the other day I looked at a woman I work with and said "Susie, I love you very much". And I do. I appreciate how hard she works and her kindness. She helps me. So I love her.

When I was 21 and my grandfather was dying in the hospital, I begged the nursing staff to hold the phone to his ear"--I love you the most Gamps". He was in a state of delirium. I don't think he heard me. I said what I wanted to say, but he never knew his true impact on my life. My telling him that was a "thank you" for not hurting me--it was a thank you for being safe and loving me safely and purely. It still hurts that he never really knew.

When my grandmother became ill shortly after Gamps died, I wrote her a poem on what I knew would be her last Christmas. I don't think she really understood it. I don't think she read poetry. And not everyone understands my poems. I am glad I had the chance to share something with her. But I used my poem as a "veil" of sorts. It's just hard to tell people that they are giants in your world when there isn't  a dire circumstance. Maybe its just hard for me. She died 3 months later.

And then my favorite brother in law, Josh. I was always begging my husband to call and see if he could meet us out. At Christmas, when the children and I were in the car and his favorite song came on the radio--we would call him and sing it loudly, laughing. He knew I loved opera and one Sunday evening at a family dinner he gave me a CD-- "Opera Babes". He died 9 days later. So special--but he didn't know how much I thought of him. That he was a favorite. It is still the most painful loss I have experienced.

And finally there is my best friend from childhood who is dying from a brain disease. I haven't spoken to her in a over a year.  I told her over and over how much I loved her But like alzheimers, her disease has ripped her of the truth. She became angry at me a while ago and won't return my calls. This happens with Huntington's Disease.  The victims get angry for reasons you can't understand. I haven't been the best at showing up at her doorstep to try to make amends. But its hard to beg for someone's love--to say "I love you I love you I love you" when you don't know what they will say. And they have possibly forgotten who you are to them and they are to you. I have no peace in this part in my life. So I certainly want to embrace those around me who are here and present.

I say "I love you" to those who I love. So that they hear before they are sick and before they die. Before they leave. Because people leave. And you are left with the love you always meant to give them withering in your hand. And then you are reminded that you should have taken better care of that love which is a gift and bigger than both of you.  I think there is mystery and magic behind relationships and feelings. I believe in that magic. So I embrace it and say "I love you".

I love him. My chest is full when I think of him. He is like Christmas morning. I like to ponder his intricate brain. He is kind when I need him. He seems to appreciate the imperfect me. I like his sweet, earthy scent and feeling the curve of his chest when I run my hand across it. His skin on my skin. And there is just that "thing" that no one can really explain. People say chemistry boils down to science. no way. Magic.

To not say "I love you" when I do...would be ignoring everything I've learned. So here I am...standing with two cupped hands. It is who I am.

Before the Forward

Michelle has asked me to write the forward for her book. I know nothing about writing "forwards"...I haven't even googled it.

Writing these few sentences makes my skin start to ache. Putting words on a page makes it real and permanent. But I'm going to pull it together because Chelle is the one living with Huntington's Disease. She is the one who struggles now to walk and to talk. So I need to be her voice despite it being the most acutely painful experience in my life....watching my best friend/sister live with a terminal illness.

Where are you God? Yeah you. I'm furious.

How can this disease exist that peels everything away from a person slowly? Over the course of 20 years everything just dissolves from your grasp. People, job, house, car, independence, body, mind, reading, voice--the disease violates a life and leaves everyone behind naked and aching.

So I will write this forward as a fuck you to Huntington's. Because I won't let it take Michelle's spirit or mine.

The Shell

In Maya Angelou's book "Letters to My Daughters" she writes:

“Let's tell the truth to people. When people ask, 'How are you?' have the nerve sometimes to answer truthfully. You must know, however, that people will start avoiding you because, they, too, have knees that pain them and heads that hurt and they don't want to know about yours. But think of it this way:

If people avoid you, you will have more time to meditate

and do fine research on a cure for whatever truly afflicts you.”

So I haven't written for a while. It is scary to write the truth. And I always write the truth. Like how to honestly answer "how are you"? when you feel like a shell of your former self...and you are a mom, and a business professional, active in the community and a role model to some.

The past few months...

cold hot rainy rainbow crying still windy sleeping laughing searching playing weeping loving thanks questions answers anger small huge black blue purple yellow red pink tolerance confusion content gone here

Its a truth that changes everyday. But what I found is that there is no shell of a former self. With every change there is a better self. And with growth, there is no need for shells.

The truth is shell enough.