“Twinless Twin”

A tribute to my twin sister, Karen

Karen died on June 20, 2009.  I had never heard the term “twinless twin” until after Karen died.  Now I am encountering it everywhere.   I’m not sure what it means or even if I can identify with it at all.  I do know that right now I sense a deep hole that lies somewhere out in the distance, as yet out of reach.

Karen didn’t just live the length of her life – - but the width and breadth of it as well.   Many people have remarked that at some deep level she must have known her life would be short.  For those who didn’t know Karen, I would say that family and friends might describe her with adjectives such as smart, beautiful, courageous, blonde, witty, loyal, and always up for a good time!  I would agree with all of those – except blonde!

When we were born, our sister, Vivica, was almost 3 and she referred to us as “her babies”.  Around our very small town in NW Ohio, we were just “the Cleveland twins” and Karen often called us “womb mates”.  Well, until later in life, when she fine tuned her biting wit and started describing me to her friends as “the after birth”! Yes…. she did.

Karen’s fearless temperament emerged early.  For our second Christmas we received two very special gifts I’ll always remember.  Mine was a little yellow lamb on wheels that I sat on and cautiously scooted around the floor.  Karen’s was a black horse suspended on springs attached to a base.  Most children would rock back and forth on a horse like that.  But not Karen.  She found it much more fun to bounce it up and down.  She bounced so high that she would literally bound across the floor.  I never tried that game!

Around that same time – I think at 18 months old – Karen thought it would be fun to jump off the arm of the sofa and see how far she could “fly”.  Unfortunately, on her third attempt, she crashed into a lamp on the end table and broke her collar bone.  I never tried that game, either!

Because Karen never married or had children, my two daughters and Vivica’s two sons became very central to her family life.  Regardless of how far she lived from her nieces and nephews, their special events were a priority in her busy life.

Her friends also became family to her.  Particularly during her time in Washington DC working on “The Hill” and with FEMA, she made very close friends and the same is true for her years in Atlanta at the CDC and HHS.  I know from the many stories I have heard from friends all across the country, that Karen was a very loyal, generous and dear friend to others.

Karen worked hard as evidenced by her many professional accomplishments – but she also valued playing hard.  Because she loved a good time, people just gravitated to her!  Karen enjoyed concerts and sporting events of all kinds, was a die-hard Buckeye fan, and she even took a few trips solo, just because she wasn’t going to let the lack of a traveling companion stop her from doing something she wanted to do.

Like our father, Karen lived life on her own terms.  She was decisive, opinionated, and clearly able to win an argument.  She rarely backed down!  She had this fiery feminine energy that fueled her professional success and added a lively passion to her relationships.

Karen had a knack for being witty, irreverent and sarcastic.  This came through in her often clever and sometimes inspirational poetry but also through her huge collection of Tshirts!  In fact that became her trademark with everyone at the nursing home where she spent the last 18 months of her life.  She had one t-shirt that said, “I’ve kidnapped myself.  Give me $100 or you’ll never see me again!” Another one said, “Do you believe in love at first sight or should I walk by again?” The nursing home staff loved the one that said, “Trust me.  I’m a lawyer.” And my favorite was the one my 14 year old daughter borrowed last year to wear to school on election day, “Friends don’t let friends vote republican!”

Karen’s most touching poem was about our mother* and Karen’s response to watching Mom slowly deteriorate from Frontotemporal Dementia – the same rare early onset dementia that took Karen’s life.  Karen completed the final two stanzas of the poem the day Mom died just 7 years ago.  In the poem, she repeats a refrain that anyone who has lost a loved one to Alzheimer’s or a related Dementia can identify with – - “I just want my mama like she was”. How many times over the last 2 years did we think to ourselves – we just want Karen like she was.

“But suddenly I feel the peace of angels settle over me.
I see her standing there with long departed friends and family.
Her loving smile reveals her once imprisoned mind again flies free.
Yes, now I know that Karen’s like she was.”

Maybe I don’t feel like a “twinless twin” because I haven’t yet integrated that she is gone.  Or perhaps I don’t feel like a “twinless twin” because I know I can feel Karen walking beside me, all the while checking out the new territory in advance of my arrival… just like she did when we were born.

Blog Entry July 20, 2009 from Sedona, AZ

By Kathy Cleveland Bull

*The Mama Poem in its entirety is below:

MAMA

I feel so guilty mourning you before you’ve gone away.
Your eyes, the color of the sky, are just as blue today.
But somewhere deep inside you all you were has gone away
And I just want my mama like she was.

Mama was the rock that I could always lean upon.
I always thought she’d be here by my side.
But while the woman I call mama stands in front of me
Something deep inside of her has died.

Sometimes when I’m sure the spark inside of you has died
And the mama that I knew is gone for good
You look at me with long remembered love of mother for her child
And suddenly the world feels like it should.

And while I’m thanking God to have the mama I know here with me.
You slip back to the places in your mind that can’t remember me.
It breaks my heart to know that once again you’ve gone away from me
And I just want my mama like she was.

I finally got the call today I knew I’d get for years.
And while I’ve steeled myself for this, my face is streaked with tears.
I stand before her praying I could roll back all the years
And I could see my mama like she was.

But suddenly I feel the peace of angels settle over me.
I see her standing there with long departed friends and family.
Her loving smile reveals her once imprisoned mind again flies free.
Yes, now I know my mama’s like she was.

Karen S. Cleveland, 1992

Completed June 16, 2002

Karen was diagnosed with Fronto Temporal Dementia (FTD)

in February, 2007 at age 45 and died on June 20, 2009 at age 48

A Lack of Lack

I had the great good fortune last week to participate in a retreat with Brother David Steindl-Rast and other wonderful modern day spiritual teachers. In our early exploration of the topic of Gratefulness, Brother David wisely noted that one of the conditions which prevents us from experiencing Gratefulness today is the “lack of lack”. We have too much.

Our lives are filled with stuff – and not just an over abundance of material possessions, modern conveniences and unnecessary luxuries. We are also living lives so over extended, over scheduled and over taxed, that we have no space. No stillness. No silence.

From the material perspective we are like children on Christmas morning opening one present after another in rapid fire succession, never stopping to appreciate the one in the hand before tearing quickly into the next bigger, better, more entertaining gift. Or the next car, or house, or job, or relationship. All these modern possessions and conveniences – and even experiences – become distractions that seduce us into complacency, comfort and denial. We believe they provide us security. Something “out there” that will fill that empty space “in here”.

Even our spiritual lives are lived in a pursuit of more. We gobble up practices, experiences and teachings in order to “achieve” some spiritual realization. We seek clarity, insight, wisdom – - Enlightenment before breakfast! This is what Chogyam Trungpa aptly called, “Spiritual Materialism”. Our spiritual pathways become racetracks for the speedy collection of more spiritual goodies!

But Gratefulness (and probably all spiritual gifts we seek) naturally arise from the space created in silence and stillness. In Buddhism this space is called “emptiness”, but we are often misled into interpreting emptiness in the west as “empty”. But this emptiness, I am beginning to see, is full and expansive, like the sky or the ocean! From this open view, we see clearly there is no lack. This big sky contains the entire universe! From this spacious view, naturally, without effort, our hearts overflow with appreciation and a Great and Full Gratefulness!

How will you generate lack (or space) to experience Gratefulness?

Click on http://www.gratefulness.org/ to learn about Brother David’s “Practice of Grateful Living as a Global Ethic”.
And to explore the teachings of Chogyam Trungpa and the concept of Spiritual Materialism, visit http://www.shambhala.org/

http://www.ncompass-consulting.com

THE WAKE UP CALL

You won’t want to read this. Unless you prefer simple, plain talk. Straight from the heart. Unless you know that life is short, bitter and sweet, with the capacity for great joy and great suffering. And unless you realize, at some level, that it is the suffering in life that can move us to our greatest understanding and insight, reveal our deepest compassion, humble us, open our hearts and soften us.

My mother died of an early onset dementia that left her trapped in a body that no longer functioned. She started showing early signs of the disease at age 50, slowly declined and died at age 64 in a nursing home, an empty shell of the vibrant, compassionate, beautiful woman she had been. This disease, Frontal Temporal Dementia, is rare – just not in my family. There is a 50% hereditary link for us. So, since my grandmother had the disease, my mother and her siblings had a 50% chance of getting it. Since my mother had the disease, my sisters and I have a 50% chance of getting it. And the diagnosis comes with a death sentence since there are currently no treatments and no cure.

Could there be a blessing buried in those odds? For me there was. As I began to internalize the idea that I would be really lucky to be still functioning at 50 a sense of urgency settled in. I started my own business which had been a goal I would do “someday”. I took more risks. I deepened my relationships. I took seriously my spiritual path and practices. Basically I started to take better care of me and those around me.

A few weeks ago after dropping my daughter off at school I came to the end of the driveway and wondered if I should turn right or left since either way would get me to work. As quickly as the question arose an answer appeared, “whichever way will wake you up.” Sometimes things in life appear, uninvited and unwanted – like an illness, accident or unfortunate circumstance. We get to choose whether it will put us further to sleep or wake us up. Frontal Temporal Dementia, for my immediate family and my aunts and my cousins, has been a wake up call.

What’s yours?

Kathy Cleveland Bull

http://www.ncompass-consulting.com

http://www.ftd-picks.org/

http://www.alzheimersassociation.org/index.asp