Say Hello To My Little Friend

A gremlin lives in my head. His name is Stewart. I know, it’s not a very scary name for a gremlin. I think it’ would prefer something like Scar, Zeus, or The Great and Powerful Norman. Something majestic or, you know, grr. Well Stewart, my old nemesis, you can suck it! 

Let me backtrack a bit. If you’re new, (Hey how’s it going?), I have chronic kidney disease. The kidney’s I was born with this package were damaged and died. I’ve had some new kidneys put in and right now I’m doing pretty good. Knock on wood. Spin in a circle and spit three times. Not tempting fate! I’m just saying I’m all right.

I’m going to get hit by lightning, aren’t I? Damn it.

Having a transplant is a surreal experience. There’s years of waiting, hoping and, if you’re into that sort of thing, praying. There are blood tests, probing, and they scan every inch of the body. There’s no part of my anatomy that wasn’t searched for buried treasure. That included my brain. Yep, there were psychological evaluations to make sure I could handle the incoming missile.

I know this’ll sound strange, please hear me out, but having a transplant is a blessing and a burden. On the surface, it seems like a no-brainer. Are you ready to undergo a life-saving procedure? Can you accept this gift of life? Uh, have the transplant: Live. Don’t have the transplant: Die. Golly gee let me think about that for a minute.

There are a million hoops to jump through and when you’ve made it through the obstacle course your reward is, drum roll please: A brand-new spot on a waiting list! Oo, fancy. Does it come fuchsia? 

Okay, there’s another option. If you have a living donor then you’re in pretty decent shape. It still takes months of testing but it isn’t years of waiting. You aren’t on a list with hundreds or thousands of people all hoping, wishing, and praying for the same kidney.

I’ve had three transplants since my diagnosis. The first two were cadaveric. Which sounds so, I don’t know, fatal. Well, it is fatal. It means the donor was declared brain dead and their family decided to donate their organs. Which sounds so callous. There’s no feeling or empathy in the definition. It doesn’t do justice to the loss or the gift given. 

But that waiting list.

This is what we’re waiting on. This moment. An accident. An unexpected trauma. The person’s brain has died. Their thoughts, hopes, and dreams are over. The body is kept alive by machines but who they were, their soul if you prefer, has moved onto whatever come’s next. They’re dead and now their family has a devastating choice to make.

Driving in the car, my parents would turn on talk radio. Politics. Weather. Some droning voice going on and on. We’d complain. Ask for something else, anything else, but my parents wouldn’t budge. Something about shaping young minds?

The voices carried on and we’d sigh as loudly as we could. Hoping our parents would take the hint. Then the traffic report came on and the car became very quiet. “Accident on Highway 1 eastbound.” Now it gonna get interesting. “Reports of one fatality.”

Game on!

One of us would say it. Who’d get it out first? “Think they’re an organ donor?” We have a winner! Believe me, I know it’s macabre. A person died. A family was about to receive devastating news. Their loved one was gone and their grief would be very real.

But I was dying.

My life was coming to an end.

My family’s grief would be very real too.

Sitting in this limbo between life and death. Hoping someone else would die. Praying that their family would sign the paperwork. Wishing for the one phone call that would give me a future and spare my family from that pain. It’s twisted.

Then the phone rang, and they said the one thing we’d waited so long to hear, “We’ve got a match.” There’s a kidney. It’s mine. I’m not going to die.

But someone did die. 

Their loved ones were saying their good-byes. The donor was being wheeled into an operating room. Their body was being cut open, their organs removed, and their life officially ended. Their time of death was written on a form. The body was sent to a funeral home. This person, that life, was gone.

It’s an amazing thing to do! One donor can save eight lives. Their eyes and tissue can improve the lives of up to fifty people. In the worst moment of their lives, a family chooses to save the lives of strangers. Does your faith in humanity need to be restored? Here you go. Do you need proof that angels exist? You got it.

As amazing, kind, generous, and unbelievably selfless that gift is, one thing hangs heavy. I was waiting, hoping, praying for a chance to live. That means I was waiting, hoping, praying for someone to die. The weight of that is beyond words.

At the time, it doesn’t sink in. No one talks about it but one word sits quietly in the corner. Donor. It’s not a name, a person, an identity. Simple pronouns. He. She. They. Donor. It creates distance and anonymity. It allows us to walk into the hospital and into that operating room without the burden of truly knowing. 

We can pretend that the kidney was given without sacrifice because if we stopped to think about it then, well, I don’t know. It’s survival. It’s a miracle. It’s a gift that came from somewhere out there. Their pain is our joy. Their lives ended so ours can carry on.

Eventually, the veil lifts and with it comes the guilt and shame. There’s an overwhelming sense of unworthiness. Do I even deserve this life I’ve been given? I should be dead. The doctors said I wouldn’t live another six months. All the signs pointed to an early grave but I’m still here. Why me? Why not them? Why was I spared and their lives ended?

If I hadn’t wished on that shooting star or said those magic words on bended knee, maybe they’d still be alive. But they’re gone. I’m still here. I don’t deserve this. I’m not worthy. Oh God, how ungrateful am I? I should be happy. I should be celebrating. I shouldn’t feel this way.

My little gremlin was born out of a lifetime of disease and long walks with the angel of death. Endless pain. One trauma on top of another. Stewart, that bastard, grew stronger and louder. He took the miraculous and turning it into a curse.

Stewart stole my joy, wonder, and my will to live. He took so much from me that I seriously considered giving up. But I couldn’t do it. It felt so wrong. Spitting in the face of those that gave everything to save my life. I just couldn’t, but I couldn’t live like that anymore.

The only other option was talking to someone which, to be honest, sounded horrible. Saying the words out loud felt worse than keeping them buried but I couldn’t go on like I was. I was way too tired to keep it up.

So I sucked it up and went to a psychiatrist. She told me something that blew my mind. Turns out over half of transplant recipients struggle with depression, anxiety, PTSD. The numbers sit around 60-70% the last time she checked.

Wait! What? Hold up. You know what that means right? I’m not alone in this. There are others like me out there right now. They’re feeling what I’m feeling. They’re fighting what I’m fighting, and some of them are winning. That gives me hope that maybe, someday, I’ll get rid of this gremlin in my head.

Not today and probably not tomorrow. I’m a work in progress. I’m not where I want to be just yet. Stewart’s still banging around up there on some bongos. Making a noise or just being an ass. Somedays I just shrug him off. Other days he lays me flat on my back but I do win more battles than I lose.

That’s an improvement, and I’ll celebrate that small victory!

If you’re struggling, no matter what the cause, please remember that there are a lot of us out here fighting along side you. For me at least, knowing that goes along way. I know that I’m not alone. You’re not alone. We are not alone. I know it’s not much, but on a bad day it’s something and something is a lot better than nothing. 

What helps you fight your gremlin? Let me know in the comments and I’ll see you next time.