Blank page. I stare at it not sure how to begin. On Saturday
night, my family and friends threw me a going away party, as I will be moving
from the Great Midwest to the Great Southwest in less than two weeks. They made
a picture board, we sang karaoke and laughed and after a slide show featuring
yours truly, I joked that I felt like I was attending my own funeral.
On Saturday night, my friend Karen was taking her last
breaths after so many years of fighting the shit that growing up with Arthur
throws at us. Karen is petite like me (thanks to Arthur). She has an amazing
smile and a devious giggle. I met her when I was 12 at what would be my last
arthritis conference until my 20s. Karen used an electric scooter that year and
I remember feeling like I was actually, “cool” once she and another “cool kid”
Kirsten, invited me to go swimming, AT NIGHT. To this day, I remember how
amazing it felt to be to be swimming under the starts, the California night
breeze chilling us just enough, the way the lights of the pool glowed beneath
the water, and how we laughed and wrestled and splashed, “like normal
kids.”
We lost touch after that weekend. I went into adolescent
denial and decided that I didn’t need any help coping with Arthur. And I spent
the next 10 years making memories with those who sang and danced with my on
Saturday night. But I never forgot those girls or that night in the pool.
In 2006, Karen showed up at a juvenile arthritis conference
in Atlanta. She was bubbly and energetic with that devious laugh and twinkle in
her eye. She was feeling good. She was a lawyer and passionate about helping
children with “special needs” and disabilities, especially juvenile arthritis, get
access to health care, medication, education and a “normal” life. She was a
fighter. When she flipped her hair back just like I do and told me about the
rheumatology fellow she had her eye on, I knew I found a kindred spirit. She
remembered me from so many years before and by the end of the weekend, we were
sisters, once again. That’s the thing about living with something like Arthur,
when you have the chance to get together with someone else who has been through
it, all the walls and bullshit pretensions fall away because we know, we can
appreciate, how what you do, drive or wear, mean nothing when compared to a
“flare free” day, when you can tie your own shoes or pick up the quarter you
dropped in front of the soda machine.
It’s been six years since I’ve seen those twinkling eyes.
Soon after that conference, Karen’s health began to get worse. The disease has
attacked her internal organs in a way that I have been fortunate enough to
avoid. Her lungs and heart were often compromised by inflammation. Her neck was
crumbling, the vertebrae disintegrating and pinching her spinal cord, threatening
paralysis. She was losing her eyesight due to Uveitis (yup, arthritis gets your
eyes) and cataracts (from years of poisonous “treatments”). Her ankle was
dissolving and certain doctors suggested amputating her right foot. She was 35.
I could write another full page of what she went through in
the past three years, but it doesn’t matter anymore. What matters is that there
is no more time. Karen and I spoke in early spring and I talked about visiting
her in South Carolina but “life” got in the way and it never happened. Yet I
kept tabs on her through our mutual “family.” I heard that she was “having a
hard time” but on any given day or month, one of us is “having a hard time” and
that can mean anything from a general flare to well, losing your foot or your
arms or your eyesight. And for us, it becomes just another “thing.” I didn’t
check in.
On September 10th, Karen celebrated her 40th
birthday. I sent the lazy person’s easy Facebook “Happy Birthday” but I didn’t
call. I didn’t know it had gotten “serious” as only we understand serious.
Last week, there were several moments when she passed
through my mind and I thought, “I have to call her later.” There was just this
nagging little voice that told me something was amiss. Yet I didn’t make the
call. Now I never will.
On Saturday night, Karen took her last breath. On Saturday
night, I held my loved ones closer and hugged them tighter and said “I Love
You” much more than usual, as if I’d never see them again. On Sunday I got the call.
I didn’t listen to that voice, Karen. I’m so sorry I didn’t
call. I can’t change it now. But I promise that from now on, I WILL call. I will listen to that voice and I will hold
my loved ones closer and hug them tighter and say “I Love You” as if I will
never see them again. Because no one is promised a tomorrow.
Here’s to finding yourself a hot doctor in heaven!! I know
you will…