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I am 47 and thriving in Southern California. One day at a time.
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Monday, August 11, 2014

The Star Trek Diaries: Day 3: Alien Nation

Captain's LOG: Friday, August 1st, 2014

I didn't get to play an alien, but I have always felt like one.

So it strikes me as appropriate that I booked a role on a TV show about space, aliens and the search for otherworldly life. Yet, I played an Irish girl (I am a 1st generation Canadian of Danish and Latvian decent). She did not exist on the spaceship; was not one of the uniformed tribe venturing fearlessly into deep space. She was not one of the alien tribes such as Klingon or Romulan or Ferengi or some other such clan with strange, scabby markings on their faces and voice boxes set to menacing rasp. She wasn't even real. My character, Maggie O'Halloran existed only inside a holodeck.

An alien situation even to the aliens.

You can see my confusion. How would I play something that wasn't real? The only frame of reference I had for a holodeck was that of a 3-D technicolored image (like a rainbow or unicorn) found on my credit card, formed by the interference of light patterns. But that's a hologram, placed on our I.D.s to prevent fraud. Maggie was created to generate love. But she could disappear, and did, as quickly as she appeared.

So was I playing an alien or was I not? Was Maggie real or not? If the feelings she created were real, then didn't she have to be?

Can you feel my confusion?

It's hard to feel a part of high school, to get down with the chess club and the cheerleaders when you've been diagnosed with CKD (Chronic Kidney Disease) at age 13. At least, it was for me. It made me feel unique in a place where I wasn't quite ready to stand out. I didn't know how to be me yet. I didn't know who I was, or even who I thought I was. I didn't know if I wanted to slouch against the banged up lockers—metal doors slightly rusted from the odious air of teenage angst that ages the young before their time—and watch the cute boys pass by, quietly skulking, stalking a social life that I wasn't sure I had the energy for. Or did I want to throw myself into a gaggle of screeching socialites, the Victors and Vixens of the Student Council Elections—[really a popularity contest that rewarded the victorious students with an office; a private space where they could make out and have lunch in hallowed privacy away from the throngs of teens in head-gear and under washed, acid-washed jeans, eating homemade lunch alone in the loathsome caf.]—and try on a personality for size I was sure wouldn't fit.

I was Dazed (by disease) and Confused (just 'cause).

Soon enough, High School ended and like SuperGirl I flew up, up and away from "The Time that Dare Not Speak it's Name." I had my own battles to face. CKD was my Kryptonite, forcing my crash-landing mere months after I graduated. But I had a superhero living in my own home. She wore no cape, but was able to give of her organs in a single bound. Let's just call her SuperMum. And by January of 1988, I was a teenage manifestation of science fiction, mooning around town around with a smattering of acne, a severe case of puppy love and 3 kidneys—2 that barely worked, and one they sewed into my belly to save my life.

As grateful as I was to no longer be acutely sick, transplantation was an isolating experience. I knew one other person who'd had a kidney transplant, and through my 19-year old eyes, she seemed ancient. Walking around with your mother's kidney inside you, with a face bloated from steroids at age 19, guarantees you alien status. Suddenly, I had a Platinum, lifetime membership to a club I never wanted to be a member of—without even applying. Pre-approved!

In 1988, a kidney transplant was still a big deal. One of my prescribed immunosuppressives, Cyclosporine, was not even approved for use in organ transplantation until 1983. Transplantation wasn't discussed in the lowered hush of a whisper reserved for patients stricken with "cancer", but it was still bizarre enough to be a conversation stopper/starter, depending on how I wanted to manipulate its direction that day. Yes, somehow, the miracle of transplantation was still revered enough by pre-social media network television to remain untouchable fodder for sitcom material.

Until it became a running joke that I was never quite in on.

Exploiting the Bizarro science fiction aspect of kidney donation is an easy card for Hollywood writers to play—too tired or too stoned at 2 am (in The Writers' Room on the Lot) to infuse any intelligence into their jokes. Instead of celebrating the improbable, they snicker at the miraculous simplicity of organ donation and transplantation. "I'll just a buy kidney on E-bay!" "I'm selling a kidney to pay the I.R.S!" So much, too much suffering is behind the loss of a cadaver's life in order to save someone trapped in a living hell on dialysis. Unless you're one of the lucky ones, like myself, and receive a living donor. I try, but my patience wears thin. Infuriated, these dreaded, cringe-inducing jokes impelled me to whip up a furious, frothy letter of disdain to "Entertainment Weekly" magazine one time, begging them to keep their jokes about organs focused on the apparent largeness of one Tommy Lee's. "Yo, overpaid writers, lay off the weed and spend a week writing your jokes in a dialysis unit."

["Look! Her blood's being filtered through a spaghetti-like mass of plastic tubes!" "Nooo, that's not Spaghetti Marinara, it's her entire bloodstream!"]

Sigh. Hilarious.

Another reason to feel alienated. Laughter directed at the very thing that keeps me alive.

And suddenly, I am orbited even further away from you Earthlings.

On Friday, Day 3 of the Star Trek Convention, I got a lot of, "You look so GOOD. You are so BEAUTIFUL." The Trekkies are generous, I'll say that. These compliments, while obviously flattering, have never meant that much to me. Don't get me wrong, the aging process isn't my favorite process, unlike say, a root canal, which I would much rather do then discover another patch of cellulite on my thigh. But what do we know when we make a snap judgment based on someone's outsides—their bodies, their homes, their choices? We see what we think they are, what we wish we had. In the past, I could pour myself into a sexy number and you'd see what you wanted to see. If I looked good on the outside, then everything had to be sparkly clean and copacetic on the inside. Right? I could fool anyone. Bet you didn't know there was a raging drug addict and alcoholic underneath that little black dress! Yes, when you are dying inside from the Relentless, [—exhaustion/headache/edema/insomnia—] the last thing you care about is a misguided compliment from someone whose eyes have just glossed over from lack of interest in your medical venting, as they struggle through an awkward pause because they just-don't-know-what-to-say, and finally sputter,

"Well, you look GREAT!"

I don't think anything in my life made me feel more alone than that—the disconnect between my reality and yours. I'd feel stranded on a planet where Earthlings could visit and participate in head-shaking, cheek-clucking conversation with me, then return home to live a long life of Hippie-esque happiness, healthy and free, exempt from the isolation that chronic illness brings. Illness invaded my soul like a virus, leaving it diseased, dying. When you didn't understand, you left me alone on a sandy, cold surface where no-one else existed. Throw in a little alcoholism, and I was lost in space, my gravitational pull yanked away long ago.

When beauty fades, it's a little insulting. When your health fades, it's liable.

 There was a theme Friday at the Star Trek Convention. It wasn't "Come as your favorite Cyborg" or "Ferengi Face-Mask Friday." It felt like Show and Tell Day at school—school being The Star Trek Convention. You show me your transplant, and I'll tell you about mine.

There was the older fan, a gray-bearded man who dialyzed at night up in his hotel room, steering his mechanical scooter from underneath a ratty, sports baseball cap, refusing to be constrained by the those bloodied, plastic tubes. He held pure Trek joy in his heart, and a twinkle in his eye for the comely Cyborgs who sashayed about, yet I will not soon forget the dulled melancholy in his eyes as he told me he is not a candidate for a kidney transplant.

There was a plain woman, so lovely in all the ways that made her plain—her soft-spoken manner, her non-descript clothes, her forgettable face. When I told her my husband had given me his kidney, she teared up, instantly, authentically, her face bursting like a twirling disco ball into fractures of dancing, reflective light; unforgettable in her reaction of pure amazement and joy.

And then there was A. He was a series regular on "Star Trek: Deep Space Nine", working one of the vendors' tables just down the row from me. As he made his way down the aisle towards me, we made eye contact. He was short, not "Napoleon Complex" sized—shorter. Was his growth stunted, like mine? Something was in the air. I could feel it, like whatever "gadar" is for the ill.  He stuck out his hand as I towered over him in my surprisingly-comfortable, mustard-colored heels. The essential pleasantries were exchanged. "Why have I not seen you at one of these conventions before?" I gave him the 90 second-synopsis. "I paused the acting career to have my 2nd kidney transplant and now I am writing a book about the experience."

His face fell, in that telling way that signaled he was about to say Something Significant. He was about to rock my world.

"I had a kidney transplant. In 1987."

He'd had the same kidney, from a cadaver, for nearly 27 years.

I was speechless.

Of course we dove into our respective histories with a relish matched only by pie-eating contestants gobbling towards the big finish. Tell me EVERYTHING! We swapped details with the fervor with which hormonally-jacked teens swap spit. The medication lists, the history, the hell. How was this possible? How had he lived this long with a cadaver? He was my hero. Literally. I had never felt so understood, so quickly and so completely.

[Except in the rooms where we do a dance of 12 steps. But that's another blog.]

And then I caught something in his eye. A flicker of fear as he admitted,

"I've never known anyone who went through this twice."

Suddenly, I didn't mind being a part of this Platinum club; this lifetime membership that I'd never asked for. Because I could see he was worried. I could see he was scared. And I could reach out my hand and keep another alien like me from losing their gravitational pull and flying off into deep space.

I had no idea where this Vegasian journey would take me, heels twirling on the terra firma of the convention hall-carpet all day long. Maybe it took meeting another alien in a room of wannabees to get a glimpse of the reason why.

On Friday, I did look good. I looked great, because I felt sparkly clean and copacetic on the inside, in a way I never have before. "You want MY 8 x 10 photo?" You want a sample of MY handwriting? You want a photo of us TOGETHER?" People used to think that if you took their picture, you were stealing a part of their soul. But all day long as I joyously gave of my time and attention, I remembered that I finally have a soul worth stealing. 

Maybe Maggie will always feel like an alien, but Henriette doesn't anymore.

Because I am finally living that life of Hippie-esque hapiness, healthy and free.

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