It’s times like this that I really feel like I’m dying. The humidity and heat outside are brutal. I just went for a walk and made it only half a block. It feels like I’m underwater. Nothing looks right or sounds right. I feel disconnected, like I could just leave my body crumpled on the sidewalk and float away. My heart is heavy. I can feel it failing. Or that’s what it feels like. It’s just heat exhaustion. It is dangerous. But I got home to the A/C and turned up my oxygen.I’ll be fine. But I’m not going out there in this heat again.
I live in the moments in between. My story includes the mundane and sometimes forgotten. The days of laziness and rest, when nothing much happens except life. It feels like I’m always waiting. Waiting for lunch, waiting for surgery. But I live in that waiting period. Life isn’t always making the most of everything. Sometimes it’s just making it through the day with the will to see tomorrow. So that’s where I am right now. In between breakfast and lunch. In between waking up and sitting out on the porch in the rain. Living.
I fucking hate you. You came in and you stole, piece by piece, everything I have and everything I am. Like a thief in the night, I wake up with another piece gone. Just when I think there’s nothing left, another piece gone. Today I read the term “air hunger” and it really struck a chord. I am air hungry. When I wasn’t looking that damn thief PH stole my breath. It’s even hard to breathe satisfactorily just sitting here.
Ok, so let’s talk about “fighting” as a metaphor for chronic illness. I am going to have these diseases for the rest of my life. That’s a long fucking fight. One that ends only when I die. When I lose the fight.
That’s a lot of pressure. And it ends up exhausting me. I think I’d do better with acceptance than fighting. Working with the illnesses. Hell, maybe even loving them.
I’m terrified of surgery. Like, terrified. Behind my come what may attitude is a nervous mess. I’m scared of waking up to weeks if not months of pain and I am afraid of dying. I’m afraid of leaving this all behind. I’m afraid of leaving you all behind. I’m afraid of my niece growing up without her tati. I’m afraid of life support. I’m a bundle of fucking nerves.
So yeah, I’m afraid. There’s nothing I like about having this surgery except that it will make me feel better.
So, big health news. I have lung disease and heart disease. I have pulmonary hypertension from scleroderma and chronic thromboembolic pulmonary hypertension. Basically, my pulmonary arteries have narrowed and old blood clots in my lungs have scarred over, putting a massive stress on my heart. I’ll be having surgery soonish and if that doesn’t work out I’ll be having a double lung transplant. I’m going through the assessment now.
Whoa. I still can barely wrap my head around it. Life has changed. My world has become much smaller. I use a walker now. 40 years old and I can’t even go get my own groceries.
I’m fighting. Punching the air. I’m a fucking shadow boxer, hitting nothing. And it’s making me exhausted. I’m fighting for everyone else, to prove I’ll never give up. But the truth is I’m sooo tired. What I’m fighting lives inside me. I’m fighting myself. And I’ll never win. I don’t want to die. But I want to stop fighting. I only have so much energy left.