I realized something recently. Mind you it is a big ugly stain on life that frustrates the hell out of me as well as drives at my motivation and all that entails. See, I have mentioned the medical issues and all that but never really spoken of them in more than a vague fashion. At first this is all to try and keep a bit of it private. At least that was my thought.
But I am seeing things a bit clearer now than I have in the past.
And it all comes to the most recent surgery. Yeah, the one that happened last week. And before I get into other thoughts, I am going to tell a story of sorts. Or maybe more like a recollection than anything else.
See, we made it to the hospital and pre-op like clockwork. We have made the two and a half hour trip often enough now to know the troubles we may see along the road and such. We have gotten to a point where we know where we have stopped along the way for bathroom breaks and such. We have made this trip far too many times.
This time after the guide had dropped me off with the nurse that would take care of me before I went back to surgery, we were standing in the “room” I would spend the time waiting for operating room to open up. It’s always the same. The gown, the sheet, and non-slip socks sitting on the bed. The curtains can be closed for privacy. And really that is your only wall to the world. I like to keep them open so I can watch people coming and going. It’s a bit of entertainment as you sit idle.
Well, this time I didn’t wait for the nurse to leave the room. I didn’t wait for the curtain to close. I started to strip down and get into the gown. I had no thoughts to the world around me at all. It’s the routine, you just do it. And it made the nurse a bit uncomfortable as she hurried out of the room and closed the curtain.
Essentially, I think I might have lost any sense of modesty at this point. Or something. But at the same time, this relates to my revelations, at least to myself. I have been hiding behind fear. Fear of the unknown and fear of the future. And the craziest part of this, it isn’t a fear of death. I think I could handle and work through that.
I have realized that my fear comes from where this disease hits me the hardest. And it isn’t my body. It is my sense of who I am. I have a disease called Lichen Sclerosis. It is a rare autoimmune disease that attacks the genital region. In my case, my body is attacking my urethra. Essentially, I have gone through the past year or so having issues urinating. Over the past six months I been in the operating room roughly 5 times or so.
The disease is rare enough that I my urologists here aren’t equipped for the surgeries I need. I have been seeing a specialist. And I have been through all of this enough times with so many people looking at my junk that I don’t even think about it when I am getting undressed in a pre-op “room”.
I have written in the past of the times I went through the surgery that I went through last week. Those surgeries were the ones that cleaned scar tissue from my urethra. This means that they had to cut flesh from my body in the hopes it would clear up my body enough that it wouldn’t close up again. And these surgeries have failed. The nuclear option I have mentioned in the past is my only option now.
The big surgery is one where they will do complete reconstruction of my urethra. The disease has ravaged it so much at this point that is close to complete failure. In simple terms, they will be using skin from the inside of my cheeks (who knew that the urethra flesh and cheek flesh were essentially the same?) to rebuild my body. And because of my disease, there is a chance that this can fail.
Thoughts of having a permanent catheter is not something I really want to bring into my life. After a couple times of spending a week at a time with one after surgeries, I can tell you it isn’t a pleasant experience.
But yeah, the fears of the unknown run rampant. On the surface level, there will be ways to survive and what not. But there is always that fear of what do you do with yourself when you lose the natural ability to do functions that are a part of who and what you are. At times it is a bit paralyzing. Maybe even a bit overwhelming.
And then I remember the best we have is always going to be hope. Because when you let your hope die in the worst of times, you lose a bigger part of yourself. And when the times are the darkest, that little light of hope is the easiest thing to let go of.
I don’t know if voicing all of this makes me feel any better. But it doesn’t make me feel any worse. Much like stripping in a hospital room where everyone can see you naked and exposed, it’s something that happens whether you want it to or not. Even when they close the curtain, there will be a moment when more people see my junk than have seen it through most of my life. Or maybe it’s just a weird fetish I have now since I am at a learning hospital. New people see my junk every time I go in. The only constant I have is my surgeon and the nurses in pre-op. Things only get weirder from here.
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