I can feel it. Summer is here. The sunshine has that vigour I associate with the season. It’s probably one of my favourite times of they year. I’m a tropical boy through-and-through. I love the heat, wearing sleeveless shirts at home and boxers and sweating it out while the sunlight comes crashing through the windows.
And then there are the trips to the beach. I would just lay there on the sand, getting a tan while music blasts out from my speakers and there’s cold drink at arm’s length. After a lengthy conversation with whoever is my present company (most of my beach trips are with others, I can only remember one time I went to the beach alone), I would excuse myself and jump into the water and stay there for as long as I can.
But that’s not how it’s going to be this year.
I’m actually afraid of perspiring because of my bandages that have to remain dry so that it doesn’t infect the area where my catheter juts out of my skin. Because of the fucking catheter, I can’t take a normal shower. I have to wrap it in cling-wrap and then I can take the shower head and direct it to where it won’t wet that area (right side of my chest) and then I have to wipe with a wet towel the areas near the spot so that I won’t mistakenly wet the bandages. Even if it’s covered in cling wrap, I’m not taking any chances.
When that’s done, I have cover myself with a towel and then bend over so that I can wash my hair and face.
If that’s how I take a bath (since November of last year), what chance do I have to go to the beach?
My lab diagnostics show that while my condition has stabled, it hasn’t improved. So while I don’t need dialysis at the moment, it still means that I am still going to need dialysis eventually. When? We aren’t sure. It can be anything from six months to five years! We just have to keep taking lab diagnostics and see. The biopsy will tell us more but there’s a lot of prep work that needs to be done and the house is crazy right now that it’s just not feasible to do it soon.
The biopsy will tell us more about what happened to my kidneys and whether I can go and have this catheter removed or if it has to stay on. Maybe forever?
And while I worry about the state of my catheter and whether I can keep it dry, in the next few weeks and months, I’m going to see photos of my friends rushing to the beach on Instagram and Facebook and I’ll be reading all the plans for beach trips and traveling plans on all my messaging threads.
I could have had a fistula placed except my arteries are too small. We tried to have one done but it never matured because my blood vessels just can’t handle it. I’m now doing exercises thrice a day that’s supposed to increase the sizes of my veins but there is no medical guarantee that it would. It’s just that there have been positive effects of these exercises. And I do it because I want a fistula. This catheter will drive me crazy. I’m going to go nuts if this is the permanent state of things.
I didn’t realise how essential taking a normal shower would be to one’s sanity. I honestly thought it would be the reverse: that the first few months of this horrible predicament would drive me insane but after awhile, I’d be okay with it but it seems I’ve adjusted quite well at the immediate but thinking about it as a permanent thing is what is freaking me out.
I don’t think I could go to an actual beach and just stay in the sand and watch everybody else jump into the water. I would die of jealousy and I don’t consider myself a jealous person. I’m actually happy when other people are happy. But I don’t know if I could be happy for other people enjoying a beach while I’m there and not being able to as well.
I love the summer and I hated the cold and now, it seems, that it might have to be the opposite. The summer will just remind me of what I cannot have and the cold protects me from the troubles I am currently facing, something as trivial as keeping my bandage dry.
This is a pity party but no one’s invited. I don’t want pity. I just want this to be some sort of, I don’t know, reminder. We have to take care of ourselves because the simplest of pleasures can be taken away from you if something goes wrong.
This is life with HIV complications. Right now, our biggest suspect for my kidney failure is the meds I was taking; they were too toxic that they eventually damaged my kidneys. They were keeping me alive but they were also damaging my system.
What if the cure is worse than the disease?
— Dracula Moon, Joan Osborne
I stop myself from regretting the shitty, stupid things I’ve done in my past that lead me here because there’s more good than bad in my life and I don’t want to trade the good for anything in the world. Would I have met certain people and done certain things had I not gotten HIV?
But today, right now, while I welcome the summer heat and think about what is coming and what might be, for the rest of my life, I can’t help but think of what I’ve lost and why I’ve lost it. It’s because I was reckless and dumb.
You only live once? You also only die once. And there are consequences out there that you aren’t even aware of that can change the smallest bits of your life and turn yourself against you. I have to be accountable for my past and my actions.
But there are just days when it’s much harder to accept and move on. There are days like this. Most of the time, I can focus on the good. Most of the time, I can deal with it.
Today is not one of those days.