Friday, June 5, 2015

Huntington's Disease & Learning to Live

{my family at Disneyland in 1958}
This is a very personal post. It's a post for me, a post for others who
 may have experienced this strange phenomenon, a post for those
in the Huntington's Disease community, a post to expose my
weakness, my desire to heal & my prayer to find peace.
You see, I've spent most of my adult life preparing to die young.
A statement like this requires at the very least, a quick rewind
into my past & family history.
My parents were born & raised in a small Midwestern town in
central Illinois. Daddy was the class president & captain of the
football team & Mommy was a prom princess & a diver who
was a standby for the 1952 summer Olympics. Clearly a
match made in heaven & one of countess love stories.
After graduation, they married in Vincennes, Indiana & my
mother became pregnant with my brother & my dad enlisted
with his best friend to fight in the Korean War. He would not
see my brother for the first time until he was 1 1/2 years old
& by then he had arranged for his family to be awaiting
him in Long Beach, California, where I would
be born 9 months later. :)
My early childhood reminds me of my favorite quote from
'Field of Dreams',
"The memories will be so thick they'll have to
brush them away from their faces."
Belmont Shore & the feeling of sand between my toes,
the smell of 'Sea & Ski' & searching for the tiniest  of sea
shells. The sight of my Daddy in a lifeguard tower & us
playing right below him, my Mommy, tall & lean & brown
& my brother Johnny...every childhood memory I have
 includes my brother Johnny. All of it so wonderful & sweet.
{now I feel nostalgic & happy & don't want to go on with the story}
When I was 10, my mother got sick & no one seemed to
know what was wrong with her. She had mood disorders
& was unsteady on her feet. She dropped things & started
walking as if she was drunk, she shop lifted something
from a store & had money in her purse. This was where
my fairytale ended & a frightening, harsh reality came
over me, just as strong as the sweetness of life that had
come before. Something was terribly wrong &
nothing would ever be the same again.
My mother was adopted, this was something I was aware
of at a very young age. I loved my Grandma Alma who still
lived in Illinois. Every summer we would drive across the
country to go visit her & our other family there & she would
fly out to see us a couple of times a year. After my mother
got sick, a big emphasis had come from her doctor to have
my grandma try & contact her birth parents & find out as
much as possible about her family history. What she found
out confirmed everyone's worst mother probably
had Huntington's Disease. An untreatable, incurable, deadly
genetic disease that was passed down by her mother & that
her 3 children would have a 50/50 chance of inheriting.
In many ways, from that moment on I felt cursed.
I'm going to fast forward a bit, simply because it's still hard at almost
60, to go through it all again. My mother died when she was 36, an
event in my life I feel I never truly got over. My brother Johnny
also died from Huntington's, which permanently broke my heart.
My younger sister & I miraculously escaped this fate, but
certainly not without scars & deep wounds.
Huntington's has effected every aspect of my life & still does
to this day. If you can imagine living with an expiration date,
that's kind of how my adult years went by...expecting to die
young & learning to be ok with that. I chose not to spend years
going to collage for a career that I may never have the time to
enjoy. I had a hard time getting married, then I had an even
harder time deciding to have a child. I had one daughter &
tied my tubes immediately after, not wanting to pass this
disease on, but my desire to be a mother was so strong I
had to allow myself this one gift, just for me. I spent my
20's & 30's off & on in therapy seeing psychologists &
psychiatrists & together they helped me find my way to
happiness. I thank God for them, for I'm sure they
saved my life.

So, I have learned to dance in the rain! I am beyond blessed
to be a survivor. My life has been so full of wonder
& love & joy & beauty, but I find myself
unprepared for one silly, stupid thing...
getting OLD.
I never allowed myself to even think about the possibility
of living to a ripe old age. It wasn't in my vocabulary.
{my sister Kris & I in 1964 & in 2014}
I know, I fervent prayer has been answered, I
should be filled with light & glory & I am, I really am!!!
I'm just gonna need a second for my mind to catch up to
my body. For the visual image of me to change from a
person who dies young, to a person who might just live
into her 80's, even 90's. I will embrace each & every
wrinkle & sun spot. I will learn to find purpose in my
old age, what a word, & I will learn to live beyond
my expected expiration date with JOY!
For all of those in the Huntington's Disease community
who are taken far to young, who die before there lives have
really even begun...I will do my best to make my life worthy
of surviving. I will LOVE with an open heart, I will
DREAM BIG & I will CREATE & leave
something of myself behind that shows
resilience & gratitude &
This is what I work towards today & every day after!

1 comment:

lordblessu said...

Wow Susie, what a hard thing to live with...always wondering and looking for a way to prepare for. I love you so and always looked forward to visit your shop and chit chat. You are a inspiration!!!! xoxo