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…