Count your blessings they say. Make a list of the things you are grateful for instead of the things you want they tell you. Those are the methods to being a happy person.
I was really good at that until the list of things I could be grateful for got stuck to something like my family loves me and seems completely okay in paying the increasing costs for my health and well-being and I can still write poetry and other stuff and all my friends (and even some strangers) are cheering me on from hundreds of miles away.
Oh, and I’m still alive. Barely.
The things that I want just seem like basic human things: to be able to take a shower without fear of getting any sort of wounds or bandages infected (like my catheter) and that my kidney would just start working again. I want to be able to work again and earn my own money and pay for my own bills. I want people to stop putting needles through me or having to take blood samples twice a week to get tests results for my body chemistry.
I want my doctors to tell me that I don’t need another procedure or operation or surgery or whatever.
I want to be able to not be jealous of everybody else whose problems are not life or death.
I’m not even a fan of Star Wars but I want to be there with all my friends catching an early screening of The Force Awakens because all of them are, in their Star Wars t-shirts and because I was a film reviewer before I became a professional hospital patient.
Because my arteries are too small and my arterial blood flow isn’t strong enough, I cannot have a fistula put in my arm. I need give or take three to six months to do these exercises, which might enlarge my arteries and improve my blood flow. Emphasis on the “might.” Until then, the temporary catheter will have to go because it’s way past its due date of how long it should be on. I risk getting an infection.
But I don’t have a fistula and my kidneys aren’t working yet so I need to do the dialysis. I need an entry point. So the doctor suggests to have a PermCat (Permanent Catheter) placed on my chest. It’s far more comfortable than a temporary catheter but it has the same problems — it can’t get wet or else it would become a possible source of infection.
So once you put the PermCat, I can no longer go swimming — beach or swimming pool — and I can say good bye to a shower. I haven’t showered since October 25. I’ve been washing from body, chest-down, with a portable shower head and I’d have to wash my arms and underarms with a wet cloth. Then I cover myself with a towel wrapped around my neck (to keep the temporary catheter dry) and while I’m seated, I bend down and wash my head and hair while bent over. I dry up before I sit up so that the water doesn’t drip down to my neck.
Washing my face means wrapping my neck in a towel also; to keep the neck the dry.
I didn’t realise how much I’d miss just taking showers.
With a PermCat on my chest, I can’t imagine how I’m going to shower above the chest. Wet towel again, I suppose.
It’s the simple things really. It’s the simple things that’s going to kill you. Just the idea of the things I cannot do. If my arteries get bigger and the arterial blood flow improves enough to have the fistula placed in my arm, it’s still not a hundred percent sure that the fistula is going to mature. If it does, then we can remove the PermCat and then I can have “normal” life back — swimming and showers included — and that’s a big if.
But already, that’s about four surgeries/operations/procedures in my future. Plus one for the kidney biopsy my doctor wants to figure out what really caused its failure. So that’s another fucking needle straight into my back. Oh! And that can only happen if my kidney is big enough and if it hasn’t suffered too much scarring because if it’s scarred, you won’t be able to get a biopsy sample.
With my luck and with the state of my body, how much do you want to bet that it’s scarred as all hell?
Five surgeries/operations/procedures. Goodness knows how many more because my body just seems to be deteriorating at a faster rate than a witch newly doused in hot water.
So, yeah, I’m not the happiest of people right now. I’m sort of all out of spirit and good cheer and strength. I just want to sink down into a really dark place and not come out until they are advertising synthetic bodies that we could transfer our souls into because I’m so done with this body.
And it is so awful because nobody knows this side of me, the dark side, the depressive. I haven’t given him a public face. He stays hidden and he only comes out when I’m alone or in my writing.
Well, he’s out on this blog entry. He’s out and he’s in control and I’m just a sad and angry motherfucker. Because there’s no one to blame for any of this. In fact, my family are so amazing for being so patient and being so generous with their love and care and their resources to making sure I’m still here and I’m alive. They are so amazing for just taking in all my darkness and negative energy and my inability to be grateful or gracious.
Because it’s really, really hard right now to be grateful or gracious about anything.
And I have no one to blame but myself. Because ten fucking years ago, I was sleeping around without a condom and I got myself infected with HIV. So this is my fault. All it takes is one God damned encounter without a condom and this is what can happen to you. No one to blame. No one but myself.
It’s so hard. I can make you a list about how hard it is to see any sort of fucking silver linings on this dark cloud. I’m swirling in maelstrom. I don’t know if I’ll come out okay.