cmdreamer

“Write hard and clear about what hurts.” – Ernest Hemmingway 

This condition has brought out the worst in me. It’s made me bitter, angry, and ungrateful which is someone I never wanted to become. I’ve always tried my best to be thankful for everything in my life and lead it with love and kindness. So, it’s safe to say I’ve struggled with being dealt a bad hand. 

Partially because I hate relying on others. It’s been ingrained in my mind since I was a child that showing too much emotion makes you weak. So, I’ve learned to brush off a lot of what I’ve been going through with a jab at my own suffering and a laugh that sounds genuine even to myself. All the while, underneath that facade I’ve been crumbling under the weight of my own mortality.

One of my favorite sayings, “life is short” became a death sentence. It was a constant reminder of all the parts of life I couldn’t be a part of now because of my new body and all of its attachments. For months I felt like I was drowning and at some point I just wanted to stop swimming. And sadly, I realized that we’ve all been in a dark place like that at some point.

For months my nights were the only time I could really express just how scared and tired I was. I would cry myself to sleep in the hopes that I could carry this anguish by myself and not be a burden to my friends or family. Of course, I would be lying if I said that my hurt didn’t find its way into heated exchanges or fits of crying at the dinner table over something as small as sibling debates. And in those moments, I was shown a kindness and love I don’t know if I fully believed I deserved. My family has never wavered in their support through this journey even when I’ve been irritable and frustrating to be around. 

I hit a turning point in this healing process when I finally was vulnerable with my nurse. I had to make an emergency appointment because I was dealing with two infections. One at the site and one in my bladder. For a week, nothing was sitting well in my stomach and I felt sick every day. My body was fighting and I didn’t even notice until I felt so bad, I couldn’t focus. 

I was sitting in one of those doctors office rooms where the walls are still littered with outdated posters about COVID-19 waiting for her. At this point, these rooms have seared themselves into my brain from the amount of times I’ve seen them in real life and in my nightmares. I still get a sinking feeling in my stomach the moment the door opens and I see the exam chair. The waiting room still triggers my anxiety and I feel like I’m reliving the first time I entered that office. And I still walk away feeling like a part of me was left there. But it gets a little easier every time.

She was swabbing my site and draining my catheter, telling me this was normal, “my normal”, when I finally couldn’t hold the dam back. I tried desperately to keep my voice from wavering. I wanted to be strong but my body couldn’t handle it anymore. I heard it in my voice, the moment it cracked and let her see the person under the patient. I saw her face change through my blurred vision and I all but begged for confirmation that this was my forever. Because I could never accept my life if I was constantly waiting for a healing that wouldn’t come. 

This was truly the first time any of the nurses or doctors who treated me didn’t downplay my experience. “We didn’t expect these complications because we don’t usually have to do this to someone so young.” I felt the air leave my body and the tension release from my shoulders. She told me the pain from the tissue around my site might take years to heal. She told me that UTIs are common and can be severe. She told me that the youngest patient other than me is 40 and they struggle too. She told me that she had no idea it was affecting me this much. 

And she wasn’t the only one. I’d argue that only two people outside of my family ever really knew how bad I had gotten. How my mom would repeatedly say “you’re okay” just trying to hold me together after a particularly bad day. How I would call my friend and cry on the phone for hours just to turn around and go to work the next day like nothing happened. How I would physically fall to my knees in defeat as I got ready to go out with my friends. 

Vulnerability is a concept I’ve always battled with. On one hand I recognize the power of being open and honest with others. In fact I encourage it. Yet, when my back is against the wall, I’d do anything to avoid the scary feeling of showing someone the sides of me I’ve hidden so well. 

As I continue to navigate through this, I see vulnerability as a necessity. In the moments that I’ve let my mask slip, I’ve felt seen. So many of us suffer in silence and thus, suffer alone. If not for the people in my life, I would’ve melted into my couch and I would’ve lost my will to fight for a life I deserve. A life I CAN have. 

So, what did I learn from all this?

I learned that life is absolutely devastating and that is what makes it beautiful.

None of us make it out of this world unscathed. The strongest fronts can hide the hardest fights. Yet, we endure. We survive because of our own resilience and because of the people along the way who refuse to give up on us even when we do.

This past month, something clicked. I wish I knew exactly what it was. All I know is that the feeling of being grateful for the sun, and early mornings, and good coffee have found their way back into my life. For the first time in 8 months, my smiles and laughter feel genuine. And I don’t feel alone anymore.

As I continue on this journey as a human and someone with a chronic condition, I will lead with kindness and love towards others AND myself. And I will try not to be angry at the times I can’t. I will just continue to do better and be better because that is all I can do. That is all I really have control over.

I’ve learned to find that comforting.