Today is the day I show them what’s been hidden behind the curtains.
In a few hours I make my way out the door to the hospital, for the monthly-ish appointment with my Doctor of nearly eleven years. He’s seen and been there for me for everything I’ve gone through, always by my side, always caring, always treating me as more than just a patient. John seems to see me as I see him, as a friend, and though it’s unlikely he shares the same sentiment towards me, I hold him as one of my best. He knows more about me in some ways than anyone else ever will, and he’s seen me at my physical worst.
But he hasn’t seen what I’ve been hiding. For the most part, I’ve kept that from him – from everybody – and have always played the role of the cheerful patient, regardless of how I physically felt. But this reaches far beyond physical. Sure, the hernias I have are somewhat painful, but more of a discomfort than an actual pain for the most part as I feel my intestines slide back through the muscle wall and find their little pocket of flesh when I stand and let gravity have its unforgiving way, stretching it like a growing foetus.
For five years, since my umbilical hernia started stretching my belly and giving me an outie that looked like I swallowed a cucumber whole and now it was sitting in my stomach, one end pressing up against my spine and the other trying to force its way out of my navel, I’ve been trying to get the operation that tucked everything back inside. Call it vanity, call it whatever the fuck you want, but I hated it then, back when it was a junior deformity, and it’s only grown; grown to the point of completely fucking my quality of life.
And unless this surgery is done, it will be there for the rest of my life, continuing to grow and get more disgusting as the months progress – along with my new hernia, an “inguinal” hernia, which sits, growing rapidly, jut to the top right of my groin. It’s nearly as if I have three ball-sacks now – one coming out of my abdomen, one on top of my c&b, and the original. From the discomfort to the monstrously hideous appearance that prevents me from doing nearly anything involving core muscles to simply taking my shirt off in front of *anyone*, I’m ridiculously limited in the things I used to love doing. STILL love doing, but can’t or won’t.
I’ve been nice up until now. I’ve talked rationally, pleaded, begged – I’ve written emails not only to my doctor* but to the surgeon who won’t do the operation based on a few minutes of poking & prodding and through that deciding that it was too risky, and I’m fucking tired of being nice, of being understanding.
Today I go see my doctor, and today, I’m not hiding my anger, pain, anguish or sorrow. I’m going to be someone he’s never seen before, and though performing the surgery is not his decision, it just might give him the balls to relay the importance of it to the person who is.
I’m fucking done being the good patient. The understanding one. The rational one.
I don’t give a fuck anymore, and it’s time to raise some hell.
Thank you for your call on Monday.
I appreciate you putting in the order for the hernia support belt, but to be truly honest with you (as I’ve always tried to be) – if the only way I’ll get the surgery I need is to have my intestines twist, then that’s what I’m going to try to somehow make happen.
For over four years (since Kat & I stopped seeing each other, back when the hernia was about 1/5 what it is now) I have pushed any possible romantic involvement away, not daring to even innocently flirt, terrified of even the possibility of anyone seeing the hernia, even more than I was afraid of telling people I was HIV+.
I haven’t even kissed anyone in over three years.
I used to have the morphine to numb the oppressive loneliness that the hernia has created in my life, and now, I don’t even have that. Living a life without even the hope of finding someone to share it with is getting to be too much to bear. I try, but at times I feel incredibly weak.
I’ve turned down offers to go swimming with friends, to go for camping trips at rivers or lakes, and anywhere or anything where I might need to take my shirt & hernia truss off. Even I try not to look at it in the mirror.
Though I understand the concerns about the ascites, I am able to keep it at a bare minimum hardly even trying to. On the day my inguinal hernia ripped through the muscle, I can *almost* guarantee that it had nothing to do with ascites – when I first felt the sharp pain, I was just playing with Ruby a little too enthusiastically. Due to the umbilical hernia combined with the months upon months I was mostly confined to a hospital bed, my core muscles have weakened to the point where they don’t have the strength to keep things where they belong anymore. I live in this body every day & pay close attention to it, and strongly feel that the weakness of the muscles have an incredibly large part in it all. I know that I can keep any fluid buildup down to the barest minimum before & after surgery if I’m allowed it. It’s barely an issue even without taking the herbs or meds for it these days – and if I have the surgery I’ll do everything it takes to heal without any complications at all.
I just want to feel like I’m alive again…
John, I’m sure you’re aware that it’s more than the lack of romance that is causing the emotional pain. The life I worked so incredibly hard to create -performing, costumes, and simply the joy for life that people once said inspired them – that’s gone, and it’s almost entirely due to the hernia & it’s physical & psychological effect on me.
When I was in hospice & the hospital after that I have NO doubt that it was my will to live that kept me alive and instilled in me the drive to learn to walk again. The spirit I once had to remain alive is dwindling.
Though it seems like Dr. Makersie is kind & thoughtful, there is one thing that he doesn’t seem to understand. Though the “statistics” say there could be a 30% chance of complications with the surgery… as my will to live fades, the chance of me dying without the surgery increases every day.