YOU ARE NOT ALONE - A companion online community discussion board for The Mental Illness Happy Hour podcast with Paul Gilmartin

I posted this on the website and under the diary thread but felt compelled to also post it here. I wrote it earlier today.

I’m sitting here at my favorite coffee place wondering why I didn’t wear looser pants. My junk is swollen. Not with pleasure; with bruising and stitches and a Band-Aid.

I had a vasectomy yesterday and like many of the twelve operations I’ve had, they were more complicated than expected. The doctor told my wife when he finished he felt like he needed a drink.

I had to be put under general anesthetic. Two years ago, the doctor tried to use a local while I was awake but because of some previous operations there was too much scar tissue and it was beyond painful. He told me he had done several thousand of these and never experienced this. I felt that familiar wave of shame.

Shame around my junk.

My wife and I had been talking for years about me getting one. We both knew we didn’t want children and she’d like to go off the pill soon. But I still woke up this morning feeling a pang of sadness. It’s now official. I will never reproduce.

My problems with my junk started when my testicles didn’t descend like they’re supposed to and at ten and eleven I had operations to lower them.

I’m not sure if the procedure is any more kind than it was back then but they attached an elastic string to the testicle and the other end to a leg cast. I think Mengele invented it when he was in his bluegrass phase. It was painful and embarrassing but in hindsight really not the worst part of the whole experience.

I’ve written ad-nauseam about this, especially on previous blogs, and I kind of want to apologize because I’m afraid of looking weird or obsessive about these issues and memories, but I figure nobody is making you read this.

Some of my most painful scar tissue is the feeling of being helpless, exposed, prodded and abnormal; the doctor informing my mom nonchalantly that I will never have kids and her taking him out into the hallway to rip him a new asshole (I didn’t understand at the time why she was making such a big deal even though I felt a wave of shame when he said it, I mostly felt numb); the multiple doctor visits, laying completely naked (they didn’t offer me a gown) on the table while he handled my body like I was a piece of meat; the time he walked in with a half-dozen interns in tow and talked about my body like I was a defective freak and I tried not to cry; my mom passively letting this happen; me feeling myself leave my body;

I buried how I felt about that experience until two years ago. I suddenly realized how abandoned and unprotected I felt by my mom. What kind of a mother wouldn’t sense her son feeling cold, frightened, exposed? I felt the buried rage and sadness. Why didn’t my mom try to get something to cover me up? Why didn’t she say anything when the doctors came in with a herd of people without warning? Why she didn’t say anything afterwards, ask how I was? Hug me?

I have always felt invaded by my mother’s eyes; like she drinks me in. It’s like the doctor visits were the perfect opportunity for her to get what she wanted. I don’t know if this is the truth or not, but that’s how I feel and I know from years of therapy that it’s not about blame it’s about processing our experience. She never once asked me if I’d like some privacy. It was quite the opposite. I remember the few times I tried to cover myself up she chided me saying “it’s nothing I haven’t seen before” or “I saw it before you did”.

After the first failed vasectomy I decided, maybe I don’t even need one. Maybe that childhood doctor was right. I got a sperm motility test. For almost two years I avoided making the phone call to find out the results. I don’t know why. Maybe I was afraid of revisiting that feeling of shame when the doctor said I would be sterile. Clearly I was afraid of something. I finally called and because it had been so long I had to talk to about nine different people and leave multiple messages, feeling like even more of an oddity that I would wait so long.

The doctor informed me my sperm number is about a million. I was impressed. Then he said, that’s basically sterile, but there is still a remote possibility of getting my wife pregnant. A million sperm and those are the odds? Now I know how parents feel whose forty-five year-old still lives in the basement.

I think the emotional scar tissue is much worse than the physical.

When I had my testicles lowered I was terrified my classmates would find out. It didn’t even occur to me how shitty it was that my dad’s train home from work would pass right by a stop at the hospital and he didn’t visit. I remember pretending to be happy blowing out the candles on a birthday cake in the cafeteria and just feeling numb. I coped by going to a place in my head where I didn’t feel. I checked out. I disassociated from my body. I never once talked about what I was feeling. I was never asked. I buried it for the next forty years.

I have one fond memory of that time; a nurse from Philadelphia who would sing to me. She looked like Liza Minnelli. I liked her perfume. She would sweep into the room smiling and cracking jokes. I loved it. I felt like she was the one person who understood what I felt; who felt me. I didn’t feel uncomfortable being naked in front of her, because I felt like more than a body to her. To this day when I’m in the care of a compassionate nurse I want to ask them to hug me. I want to cry on their shoulder. Not because I’m still sad. I’m not sure why. Maybe because they feel like the mom I always wish I’d had and I know what a difference their kindness can make in someone who is feeling shame or fear. Like most childhood trauma it has also left me with sexual fantasies around nurses and being cared for. Yes, there are some videos online, most are terrible and miss the emotional point of the fantasy.

Back to my renegade testicles. I was told after one operation that I shouldn’t ride a bike for a while. I thought they meant peddling. They didn’t say it was because it was about avoiding sitting on the seat and having your legs hang down. I had my brother chauffer me on his bike, which was even worse and it screwed up the operation of one of my testicles, leaving it higher than the other. I was sure no woman would ever be able to overlook this. I now know, thanks to feedback from my wife and other women I’ve shared this information with they’re not big scrotum fans to begin with. Very few get the newsletter. Last year’s convention was cancelled.

Why am I sharing all this? I don’t know. Maybe I’m one of those people that have to share every personal detail of their life. Maybe I need to let this out. Maybe I want to know that other people have been through something similar or are working to overcome an adversarial relationship with their junk. I started the podcast to help other people feel less alone, but I didn’t write this to help other people. It didn’t even occur to me when I sat down (gently) to write this. That’s how “unique” I feel even though I know realize as I type this how crazy that is. I’ve read the body shame surveys on the website. But most of the self-hatred shared there has to do with feeling fat. Very few people share about their junk. I know there is an epidemic of girls growing up hating the size of the labia. I hate to say this but when I first heard of this it made me feel better. That’s so selfish but it made me feel less alone. I guess that’s how toxic body shame can be.

When I’m showering after a hockey game and I see guys with “normal” looking junk I think to myself “I wonder if they appreciate that?”

I’m normal sized when “in action” but not so impressive back at the barracks. In fact it looks like I’m in my bunk with the covers pulled over my head. Every time I get undressed after a game, there’s even more shrinkage and I’m reminded of all of this stuff. Almost like I’m waiting for someone to razz me. I know it’s crazy, but emotional scar tissue isn’t always based in reality. Lots of my teammates don’t shower. Maybe they’re dealing with shame too. I feel like my genitals are an annoying neighbor and neither of us are going to move.

So here I sit for about the sixth time (I also had two hernias and a benign tumor) looking like my groin was hit by a baseball bat.

I’m not sure what to write next. So I’ll wrap this up like it’s a documentary on A&E being voiced by Bill Curtis.

Scar tissue has been around since the dawn of man. It carries with it the reminder that life is inherently dangerous on this rocky planet. Much like the early cave drawings, they bear testament not only to where we’ve been…but what we’ve fought.

Thank you for sharing Paul. I've been dealing with scar tissue for 20-30 years. 20 years of physical scar tissue, 30 years of emotional scar tissue.

I was in and out of the hospital all of the time as a kid with kidney problems. It wasn't until a few years ago that I realized that all of the night terrors I have, waking up screaming and pushing ghost arms off of me that are holding me down, are due to the kidney tests I had 3 times a year growing up. I had blacked it all out for so long except for the pain and the sounds of my screaming, "Stop, it hurts" or "I have to pee!" and that uncomfortable feeling when you have to pee, your bladder so full you can't do anything but obsess over it. I hear my mother telling me that it's ok, there will only be a few minutes left until it's over. Once I was able to bring the memories back to the front of my mind, I realized that she wasn't just there saying it was ok, she was also one of the ones holding me down, enabling the doctors and nurses to hurt me. To this day, just seeing or hearing the word "catheter" bring me to near hysterics. My mother finally realized the issue I have with them when I had to have my gallbladder out 4 years ago, and the nurse came in and said they were going to catheterize me. I started shaking, hyperventilating, and crying. I was already hooked up to a few machines and they started beeping like crazy. I told the nurse there was no way I could have the catheter, that I would go to the bathroom right before they wheeled me into the OR, but there was no way I could get that catheter. My mother told me to buck it and and deal with it, but the nurse gently helped me off the hospital bed and into the bathroom, saying that if I went right then I wouldn't have to worry about the catheter. Later that afternoon, after the operation, my mother said she couldn't believe how I cried like that all over a stupid catheter. OK lady, you try having one of them shoved up you 3 times a year from the time you are born until you're 11, and then you tell me again to "take it like a man."

At 9 years old, I had surgery to fix the kidney problems, and have had a C-Section scar since then. I have always had a tummy pooch, you know, that one that mothers get after they have their babies. It has been a source of pain for my mother for years. She always says I need to do crunches and get active to lose the weight around the pooch, even when I was super skinny as a teen. I'm ashamed of the scar, and have come to realize it's one of the reasons I've been so sexually inactive. Here I am, about to turn 30, and only had sex twice. Once that I don't remember, drunken in the back seat of someone's car. The second time, we had both had a few drinks, but things didn't work out on his end, so it didn't get very far. But I'm always wondering about what someone would say if they saw the scar.

I always thought I didn't have any type of baggage problems, because I've never had a boyfriend, no relationships, etc. But after writing this, I realize that I have baggage, and a lot of it. Thank you for this opportunity to be able to connect and see that other people have the same feelings and problems that I do Paul, this site has been one of my saving graces lately.

Paul, I have to say, the first time I heard you mention your "junk shame" on the podcast I got chills. I had a very similar situation to yours. When I was young (2-3 or something) I had un-descended testes that required surgery, then I injured myself and had an inguinal hernia at around the same time which required more surgery. I have a big scar on my abdomen and another on my scrotum. Inside my sac I can feel the twisted, gnarled scar tissue around one testicle. It hurts constantly and I have chronic epididymitis. I've always known that I had the surgery and I've always felt self-conscious of it. Especially when my mother, a nurse, would demand I let her examine it. Any time I winced or mentioned pain, it was time for me to strip down and let her have a look and poke and prod around... When I got sports injuries, it was the same. For years I thought that the ridge of skin down my scrotum was a horrible scar and that I should be ashamed of it. I had no clue that it was a natural thing. I do have a scar but it's much less noticeable but it's definitely feel-able inside.

My junk shame prevented me from intimacy for a long, long time and it still kind of does now being single again. The emotional scar tissue is there as well, pulling painfully tight and restricting forward movement.

This hits home for me. A big "thanks for sharing" goes out to all who post on this thread. I deal with the shame every day because my limbs and face are changed as well as the scars people don't see because they are covered. My parents while not wanting to appear to make me feel different from other kids or what not always seemed to make a big deal about my arm and mobility in public which sort of defeats the purpose of saying you are the same as all the other kids no? Now I'm not saying they did this to fuck me up. I think they did it (my dad particularly) because they knew how hard it could be and they where trying to make my life easier in their way. Perspective is everything I guess and during these times I know I fought them and rebelled against their advice just because the act of rebelling gave some of the power and control to me rather than the condition. I don't fault my parents for trying but these little comments and suggestions REALLY HURT when you are trying your best already and the comments really only serve to add to frustration. I find now that I'm doing the same thing with my father as his health declines. A probing question here, a suggestion there when he is really the best judge of what's happening. Monkey see, monkey do I suppose. Anyway I thought I'd share a bit I hope it helps someone.