What if there was a way to cure your disease? It’s a simple procedure. A minimally invasive surgery. There’s no financial burden and the risks are relatively low. Recovery time isn’t that long. You could be back to your normal routine in a couple of weeks. One procedure to cure an illness that’s been threatening your life for decades. Would you do it?
Is the answer bursting to get out or is there an uneasy feeling in your stomach? Are there tears in your eyes? Are they joyful or fearful? Is there a bubble of excitement ready to erupt or is that dread? Can you tell the difference?
Last year I decided to see a new cardiologist because it was time for a new set of eyes. The first visit was fairly straight forward. If you’ve seen one specialist, you’ve seen them all. He took my medical history and did a quick exam. It was routine until he started asking more in-depth questions about my kidneys and what renal failure did to my heart.
I have an arrhythmia called ventricle tachycardia (VTAC) and premature ventricle contractions (PVCs). Sometimes my heart beats way too fast and sometimes it throws in an extra beat for the hell of it. Think of it like a bowl full of jello. Shake it up and watch it wobble. That’s what it feels like when my heart goes into VTAC. It’s beating so fast it’s impairing blood flow to my brain and body. My eyesight goes, my arms and legs get heavy, and my hands get cold. It feels like I’m being pulled out of my body then snapped back into it. It’s a terrifying feeling and I’m conscious for all of it.
VTAC is a serious, life-threatening, rhythm that can lead to cardiac arrest if it isn’t treated. Those times I’ve been clinically dead? This is what caused it. My heart was beating too fast, for too long, and it got tired. A tired heart will eventually need a break and that leads to a grim outcome.
I was diagnosed with VTAC when I was sixteen. I’ve lived with it for over half my life. Managing the condition has been my only option. I take medication, watch what I eat, and work out. I don’t drink coffee and limit salt intake. I give my heart a fighting chance and hope that it holds up. There’s never been a cure so I just got used to having a malfunctioning heart.
The good news is, as long as my transplanted kidney is working, the rhythm doesn’t come out to play that often. I’ll feel it quiver a couple of times a day, but it hasn’t reached crisis level in years. My hands will get a little bit cold and sometimes I get a little dizzy. Usually, it’s a bother more than a problem. Sometimes though, it’s a bit more aggressive and I have to rest until it settles back down. It’s a potentially life-threatening nuisance but what can I do? Medically, not a hell of a lot.
Then I met this new cardiologist, and he asked a question no one else had: Why is the arrhythmia still around? We know what caused it but the cause, kidney failure, has been treated with a transplant. My blood levels are normal, and my heart looks healthy. All the tests show that my heart is in better shape than it should be. Given everything its been through, there should be more damage but there’s isn’t. It’s healthy, so this arrhythmia shouldn’t be here anymore but it is. Why?
It seems like an obvious question, right? When we stop and think about it, it’s the most logical thing to ask, but no one did. In the decades since my diagnosis, no one has thought to dig deeper. To be fair, I love fairness, at the time the answer didn’t matter. There was nothing they could do to fix it so keeping it under control was the only option. Now? Science! Don’t be afraid of it. It’s a beautiful thing.
After months of testing, the doctors think they have a way to fix my heart. The problem isn’t structural. All the tests show the framework and plumbing are working as they should. The problem is electrical. The wires have gotten crossed, and they’re sending faulty signals. If we can pinpoint the fault then we can cut the fuse. We just have to figure out where the fault lies which is a bit problematic. As my electrophysiologist said, “Your physiology is an enigma wrapped in a mystery.”
It’s not a straight shot across the finish line and there are a lot of hurdles in the way. They’ve told me that I shouldn’t get my hopes up too high. Don’t worry Doc. When it comes to my body and health, hope is pretty tempered. I’ve been playing this game for a very long time. For me, hope is dished out in small portions. I’ve gotta keep some in reserve if i’m going to handle the disappointments.
The mere chance of a cure, the thought alone, is invigorating but there’s another emotion that I never expected. One that has me perplexed. I’ve always thought that I would jump at a cure for all of my medical conditions. I thought it would be a relief and a celebration. A cure? A chance to be healthy. A chance to live without a ticking time bomb inside of me. A chance to be a little more normal.
Why wouldn’t I jump at that?
I left the doctors appointment feeling hesitant. It’s not the procedure or the potential for disappointment. I’ve had surgeries more complicated and more dangerous than this one. The fear of my mortality has been dulled. Death doesn’t scare me anymore. I’m ready to go because I’ve all ready been. It was a place of peace, love, wholeness. That place, let’s call it heaven, was perfection. So, the surgery doesn’t frighten me, and the risks don’t bother me. So, what is bothering me?
This is going to sound strange, and I’m not sure I understand it either. I’m struggling to find a way to explain it. Crazy isn’t a word I like to use but it might be an appropriate description . I’m trying to make sense of these feelings, but I’m not going to do a good job. I apologize if my words are jumbled but they match my thoughts perfectly.
The idea of a cure, as far away as it is, brings a feeling of emptiness. I feel like I would be giving up a piece of myself. This fault in my wiring has been a part of my story for so long that getting rid of it means my story ends. I know that’s wrong. It would end one chapter and pave the way for the next one to start. However, it’s become so intertwined with my identity that I don’t know if I can get rid of it. Getting rid of it, as bizarre as it sounds, feels like I’m killing off a part of what makes me, me.
Does that make sense or have I completely lost my mind? My sanity has been walking a tight rope for quite some time. Tipping off wouldn’t be beyond reason. I feel like I’m standing on this rope and my legs are starting to shake. I have to choose to go forward or back but my legs are trembling. Falling off the edge is a fifty-fifty shot.
The decision to have the procedure isn’t a toss of a coin. When, or if, the moment comes, I’m sure that I’ll choose to have the surgery. I can’t see myself saying no because of some misplaced sense of self. Having one less thing to worry about, one less thing holding me back, will be a relief. I’ll thank God and medicine for this miracle of science. That moment will come, but I think there will also be a period of mourning.
Saying goodbye is hard to do even when we’re saying goodbye to something that’s doing us harm. That’s especially true when it’s become a part of our identity. I’m sure it’s even harder when its an identity placed on us by others. In my case, I’m not sure when my illnesses became my identifier. I’m not sure if it’s self-imposed or if it’s something others have placed on me. A bit of both? I’m not sure where my illness ends and where I begin. So, I suppose that means I don’t know who I’ll be after I say good-bye.
The thought of losing a part of my identity is terrifying. I feel a little lonelier, more vulnerable, and a bit exposed. Like a piece of my armour is falling off mid-battle. If I lose this one piece of me, who will I be with it gone? What will my life look like then? Will everything change? What if nothing changes?
I’m scared of saying good-bye because I don’t know what I’m saying hello too. For the first time, in a lifetime, I’ll be venturing into uncharted territory without one of my companions. I know what it means to be sick. I know what’s expected of me when I’m ill. I’ve walked this path a very long time but now it might be time to forge a new path. It might be time to leave this thing behind and carry on alone. Though, I think I’ll look back with a little sadness. I’ll miss the journey we’ve taken together and the identity we’ve forged. I’ll grieve the loss because it will, in a strange way, be a loss.
Then again, not all losses are bad and sometimes grief gives us room to grow. This could be a chance to try on some new identities. Play around with my identifiers and explore sides of myself that I don’t know exist. How often do we get a chance to do that? How often do we give ourselves the chance to write a new chapter in our story?
It’s a thought, a possibility, that’s both terrifying and exciting.
Lots of food for thought