Saturday, November 30, 2013

< 3 My Testicle and Me



The following article was published in Contemporary Sexuality, a publication of AASECT (American Association of Sexuality Educators, Counselors and Therapists) May 2013, Vol 47. No. 4. I am publishing it here with their kind permission.

A note about the following article. I could not copy their edited copy of my final draft. Their edits made it better, apologies for the uncorrected errors not found in the final copy.  Blogger refuses to let me put the symbol < right next to anything else, I've had to put a space between  it and anything else. I hope your eye simply removes that space.

Finally, thank you for those who have donated to my Movember fundraising attempt. I had aimed at ten donations and fell far short of that. I decided to go ahead and publish anyways and hope that some others would feel moved to make a small donation. Links to make a donation in a variety of countries can be found on an earlier post.

< 3 A Graphic Discussion About My Testicle

< 3

The first time I received an email with the notation < 3 on it, I was struck silent. The person sending me this is someone who thinks that “darn” is a curse word. He would never, ever, ever send a pictogram of testicles in an email. Imagine how disappointed I was to find out that < 3 represented, not testes but ‘heart.’ I desperately wanted to tell my correspondent how I first interpreted his email but, in a mammoth bout of self restraint, managed not to.

00

I have drawn probably at least a couple thousand sets of testicles in the last many years. I do a fair bit of abuse prevention training and, in one part of the training, those attending, people with intellectual disabilities, are presented with an outline of a body.  They are asked to call out the parts that need to be drawn on the figure. Now, in fact, they don’t often call out “testes”  or “testicles” … no, they use the words that we all use, most commonly, “nuts” and “balls.” There is usually a lot of laughter during this exercise. Of course we end up discussing words that are used to talk to doctors or to police and thus “nuts” morph, verbally, into “testicles.”

0

I am a man. There are many stereotypes about masculinity that I, as a gay man, don’t buy into. I don’t like sports. But some aspects of the stereotype I fit.  I do like balls – my own included. As someone who has strongly advocated for the rights of people with disabilities to be sexual I’ve always been kind of pleased to hear, “That Dave, he’s got balls man!!” Yep, I do, I’d think. Figuratively and metaphorically I < 3 my < 3.

((00))

I was standing in front of an audience of 300 somewhere in the wilds of Connecticut. I felt my leg begin to go numb, I thought it was about how I was standing, so I moved around a bit. At break I sat down to rest, I didn’t know then, that that moment would signify my transition from standing and walking to sitting and rolling. By noon, I knew something was very wrong. By two, I had to, for the first time in my career, halt my presentation before finishing and head home.

The first rest stop was alarming because I couldn’t get out of the car. Joe had to assist me. I’d hold on to him and then drag the one leg along. I knew I hadn’t had a stroke, but I knew something was wrong. We arrived home at about two in the morning. I’d convinced myself that I’d just gotten over tired, that I really needed rest. 36 hours later having fallen over in the bedroom, forgetting that I could no longer walk unassisted, we were on the way to Emergency.

They brought me a wheelchair so I could get into the building. I saw this person, then that person, all as part of the process of checking in and being assessed for what level of emergency I presented to them.  Finally, I’m changed into a gown; I’m laying on a bed in the hallway waiting for the physician to come. When he did he asked a few questions. In my answers I told him that I had a small infection on my upper thigh but it didn’t seem to be anything too serious.

He lifted my gown.

He took a good look.

He said, “Oh, my, God.”

And disappeared.

Twenty minutes later he returns and pushes me into an examination room. He isn’t alone. He is with about four other doctors. This is Sunday, these were probably all the doctors they had there that day! They look, they all look really concerned – and slightly fascinated – one said, “I’ve never seen this outside a text book.” Then they began talking about me, forgetting I could hear. It was clear that I needed surgery within the next few hours; I would not survive until morning.  They called someone, I don’t know what her position was but she must have been senior.  Could the surgeon be called in they asked her. I would die without immediate surgery. She authorized the call.

I wake from surgery.

Coming too was a relief. I’d signed a consent form  for surgery after being told that there was a “good chance” that I’d not wake. I saw Joe’s face. He looked tired. He looked worried. I asked him if everything went well. He didn’t nod his head. He glanced over to the doctor who was, by then, standing there. The doctor answered, “It went fine. You came through the surgery well.” Then, the doctor left. I saw Joe’s eyes follow the doctor, he looked shaken.

Something’s wrong.

00-0= 0

I fall back asleep. It’s a fitful sleep. I was feeling nauseous because of the anesthetic and I knew something was wrong.  I wake again and Joe is sitting beside the bed. “Tell me,” I said. He said, “They had to amputate one of your testicles. It couldn’t be saved.”

I was stunned. No one had mentioned to me anything about my testicles. The paper I signed for the surgery said nothing about amputation.  Make no mistake, I would have agreed – life with one ball is still life with one ball – but I didn’t know how or what to think, how or what to feel, how or what difference this would all make. I was completely confused and totally frightened. My body was altered, made different.

Masculinity and I have an uneasy relationship to begin with. As a boy I was chided, teased and bullied because I wasn’t “one of the boys.” I didn’t want to play ball, I didn’t want to climb trees, I didn’t want trucks for toys. I was a “Nancy boy” who “seemed normal enough.” I had to take a test at one point about my maleness and they asked questions like “Do you prefer the smell of a fresh caught fish or the smell of perfume?” Well, I think that fish are smelly, not good smelly, bad smelly, and I was at that naïve age that still thought that honesty was the best policy. The results weren’t good news for my parents … they were all surprised that I wasn’t wearing my mother’s clothes (they asked her that in front of me).

But I knew I was a man. By then I also knew that I found boys more attractive than girls and yet I liked to hang around with girls more than boys. My proof that I was a man?  < 3 plain and simple. I had balls, I was a boy, that was an easy equation to make and it’s one that gave me some comfort. Let others discuss my masculinity or my ‘maleness’ or my ‘gender identity.’ I knew that I was a man who thought other men were hot – and my self knowledge kept me sane while discussions about the fact that I thought hockey was boring swirled round me.

0                                                  -->0

Then someone threw one of my testicles in the trash.

It’s a new doctor now. An older man. He is followed around my young doctors, very young, as he comes in to see me. He’s gruff. His bedside manner isn’t for me; it’s to demonstrate to young doctors how to be imperial. He asks a couple of questions of me. I answer. He turns to leave. I ask if I can ask some questions. He looks annoyed but he stops to listen. I ask the other doctors to leave. He’s outraged. They are there to LEARN. I am now annoyed and I said, “Well, they can LEARN that patients have a right to some privacy.” They leave.

This isn’t the best way to begin the discussion. For all the times that I have drawn testicles, for all the times that I’ve taught about what they are for and what they do, for all the hours I looked at them in a mirror as a kid, I discovered there were things I didn’t know. Like – what happens when one magically disappears? So I begin and say, “When I woke up I was told that I’d had a testicle removed.”

What did I expect?

I don’t know – maybe too much. I expected to have this man to be a little sympathetic. I’d had an amputation for God’s sake. Further, I’d had my genitals disfigured, cut off, thrown away. I was feeling a little … DAMAGED. But I didn’t get sympathy. He actually said, “Yes, so?” I start to cry. I want something from him. I want reassurance. I want him to spontaneously answer all the questions that I have.

Will I still be sexual?

Will I still be able to get and stay erect?

Will I still be lovable?

Am I deeply disfigured and damaged?

I squeak out a question about my sexual abilities. He says, “What are you worried about, you’ve still got the other one.” And he walked out.

I lay in the room a long time.  My hand reaches down to touch where the surgery had happened. There are bandages upon bandages. I feel nothing, then I begin to weep as I realize that, where I’m touching, there’s nothing to feel.

-0

It’s gone.

I tried several more times with several more people to get answers.  My questions were dismissed. Worse, though, was that I was made to feel “unmanly” because I was feeling “unmanly” and that I was experiencing girlish emotions. One nurse said, “It’s not like you had a mastectomy.” I wanted to say, but didn’t, “Yes, it’s like I had a mastectomy, except, no one cared.”

And … I’m not supposed to care either.

< 3 = < 0

It’s taken a long, long time to process what happened to me at the hospital, both the amputation and the lack of care or concern for my reaction to the surgery. I wondered for the longest while why ‘I’ didn’t matter, why ‘my’ concerns were considered silly or foolish. I asked myself questions.

Was it because I am exceedingly fat – did that make me into a non-sexual, non-gendered being?

Was it because I was gay – did that make any my questions about sexuality irrelevant – I’m not going to make babies with my boyfriend anyways?

Was it my age – I was in my fifties, so who cares if an old geezer gets off?

Was it simply my gender – men don’t have feelings anyways, really, do they?

In the end, I don’t know why what happened happened. I guess I will never know. I do know, however that I was lucky to work in the area of sexuality, I knew where to get information, I knew, maybe more importantly, what questions to ask.

What I was left with, however, was a scar.

One on my body.

One on my soul.

It’s hard to completely not matter. It’s hard to look into the eyes of someone paid to care and recognize that they don’t.

At all.

It was a ball. It was thrown away. Get over it.

Well, I guess me writing this means that I did, eventually, seven years later, get over it. Up until writing this down, I’ve never spoken about the loss of a testicle or the journey that resulted because of it. I wasn’t ashamed about that tiny loss of weight, but I somehow felt unmanly talking about the fact that my feelings were hurt because my hurt wasn’t acknowledged.

Perhaps I am a ‘Nancy Boy’ after all.

And if I am, I’m good with that.

And I’m good with < 3ing my < 0.

19 comments:

Maggie said...

Wow.

I am stunned by the level of callous disregard shown by doctor after doctor, nurse after nurse.

I want to reach back seven years and give you the hug you so richly deserved in those moments. I want to remake the imperious doctor into someone who would apologize for using you as a teaching case and forgetting that you were a hurting human.

I want to reach back to the original consent form and ask the questions that would show whether the patient - you - had been clearly told what was proposed, and whether you had understood and agreed or not. Rather than, as so often happens in crisis, the doctor speaks on and on and the patient hears nothing after the Big Scary Diagnosis Word (which the patient may never have heard before).

I want to apologize for all of us connected with all the hospitals in the world for ever making you feel the way you felt that day.

Thanks so much for sharing this story with us.

Tom R. said...

Your testicle mattered and you matter (a lot). Your candor and willingness to share your most vulnerable moments is an amazing gift to the rest of us. Big hug.

Anonymous said...

I'm sorry for the abuse you suffered at the hands of "care providers." Yours was an incredible loss, and I am alarmed at the (non)reaction off those people who were responsible for your "care." What a dreadful example of the arrogance and ineptitude of those who are supposed to know better.

clairesmum said...

I am sorry that you were treated so badly by the doctors and nurses...such insensitivity is cruel and a misuse of power. I am grateful to you for sharing this story, and, again, awed by your use of words. Take good care, Dave.

ssassefras said...

Dave, I'm so sorry. This is such an important story. I'm sorry you have it to tell. Thank you.

Tamara said...

I really wasn't sure I wanted to read your story when you first blogged about it. Since you kept it private for so long, I thought it would be too personal.

After reading it, I can understand that it was a very difficult story to tell publicly and, once again, respect you for setting it free in cyberland. Very courageous, IMO.

I find myself in the same state I frequently find myself after reading one of your posts - confused about how people think it's their right to treat others with such disrespect. Whether it was "because of" age, gender, sexual orientation or weight, doesn't matter. There is no justification.

No one has the ability to understand another person or how they came to a particular point in their life. Contrary to what another commented on another recent post, there is no universal need to label a person and put them in a box based on who they are or what they do that has no impact on you. It's behavior that's taught. I understand putting people in a "you treated me bad, I'm done with you" box. That's self-preservation. But this?

There is just no need to treat another person that way - whether in your head or with your actions.

Anonymous said...

I was almost afraid to read this post. The subject is sensitive, and I'm a woman, so I was afraid I wouldn't completely understand.

But what I am now is MAD: that you were treated so callously.

I don't care that surgeons may need to harden themselves to be able to do what they do - for the whole hospital to do the same is unconscionable. There should have been support people there, immediately, to help you deal with the change in your circumstances.

I have a very good friend who had a double mastectomy - and I was supportive (and still am), but I know she needed the support of other people who really knew what it was like - and she is getting it, to this day.

I hope you have a similar support group, and that they really help. And of course Joe has been there - you are both blessed to have each other.

Alicia

PS I hope other people contribute, too - this is important information for all men.

wendy said...

I am shocked at the excess pain and hurt that was heaped upon your physical pain and loss. I'm so sorry that happened to you. The lack of empathy you were shown is staggering.
Thank you for sharing this story.

Glee said...

You are an excellent 'Nancy Boy' and lots of hugs to you from me :)

Shan said...

Aw, man, that stinks. I can't seem to think of anything else to say.
:(

Someone I know woke from an emergency (full-term stillbirth) c-section to be told she no longer had ovaries or a uterus. Welcome to menopause at age 30: "at least you're still alive". My best friend got colorectal cancer and just before her first radiation treatment, one of the doctors happened to mention that "of course this will kill your reproductive system". Wha--- do you mean this radiation will push me into menopause? "Well, you're 44 years old, it's not like you're having any more kids or anything."

Maybe if I were in charge of the things THEY are in charge of, I would see past the human being just like they do. Maybe I'd focus so hard on the big picture -- 'you're alive, quit complaining' -- that I wouldn't see the painful reality that I was altering people's bodies, their private places so important to their self-perception.

I'd like to think I'd be a little more compassionate when faced with these necessary horrors. Maybe that's why nice people don't seem to make up a large proportion of brilliant doctors...if you're soft-hearted, you can't hack it.

By the way, I donated in person rather than online.

Shan said...

Oops Dave, I forgot to read that comment over before submitting...forgive me for any errors or lack of clarity!

Shan said...

Reading my comment it almost sounds like I am making excuses for them...I didn't mean to.

Deb said...

Dave, I am so sorry. Where is the *humanity* in these people? In too many cases medical training seems to beat the compassion right out of the idealistic young person who begins with the idea of "helping" people.

I've heard some women say surgeons wouldn't be so callous about the emotional effects of hysterectomies if they were removing testicles, but apparently that is not true in all cases.

Why should how you *look* matter? YOU have to be big, how else would your heart fit in your body? And if anyone suggests you were treated this badly because you're gay I'd give them a knuckle sammwidge *myself*! OUR Dave!

If I could I'd go back in time and not only advocate for more respectful treatment but give you and Joe the support no one expected you to need.
But for *now* I am sending a warm hug.


painting with fire said...

I am horrified at how callously, casually cruelly you were treated at such a vulnerable time. And thank you for sharing such a wrenching experience with us all - your candor and bravery is amazing.

Rosemary said...

Their callousness brought me to tears.

Jeannette said...

Yes. Yes to what everybody else said, better than I can.
And also a reminder to you, dear Dave, that every cell in your body is male. Every blessed cell. The <3 is only an outward symbol, only one manifestation of the maleness that is you.
Thank you again for all that you do and say and share.

Anonymous said...

There are truly few things worse than feeling marginalized by medical professionals. They are people we pay to care. And when they don't--what recourse have we left?

I had some health problems a few years back and was both gobsmacked and totally demoralized by the utter disregard for the condition itself, and for my mental anguish over the condition.

It wasn't life-threatening like yours, Dave, but it was truly life-altering and I couldn't understand why no doctor would take it more seriously. After MONTHS I finally got it resolved. But like you, the scars are there forever. And I am touchier and angrier and have vowed that no one will ever dismiss me that way again.

<3's to your <0, Dave.

Sue

Anonymous said...

Dave, I am horrified. I wish I could hug that younger Dave, and demand that someone answer his questions, take time to recognise the injury and the need.

I never fully realised how much medical contempt reflects medical inadequacy. If your job is to be all-competent, and you're inadequate to the job, it must be the other fellow's fault. I owe you thanks for that realisation, and fellow-feeling for the not-mattering.

Oh, manly? It takes courage to admit pain. That's one of the cardinal masculine virtues, as I recall.

18Penguins said...

Hi Dave,

Thank you for telling your story. I have donated.