Monday, 15 January 2018

Hanging around while feeling unneeded

It is normal for any human being to want to feel wanted, needed and possibly even loved. To remove or blunt that desire means to strip a person of their empathy, of any shred of love for themselves and ultimately the will to live.

For the past decades I have struggled with being 'different' in a variety of ways. First there was me being gifted, and a purely visual-spatial thinker. This was what first got me isolated during primary school and severely bullied and beaten up on a number of occasions. My only friends during my school period were the other outcasts and misfits.

Then there was the intersex thing. To discover that I never was a male. That my body wasn't at all what I had been told what it was supposed to be. To society I merely changed from a male into a female role, but underneath my skin things are infinitely more complex. Organs, or at least functional tissues, have kicked into action and forced my body to become definitely more feminine along with repairing old scars and the like. Yet I will never be a woman. Once a hermaphrodite, always a hermaphrodite.

Thirteen years. That's the current count for how long I have been trying to figure out what this body of mine is about, and more recently why I'm suffering chronic pain, abdominal distension, etc. Last month I finally figured out that what has been causing a lot of pain and discomfort since I was 11 years old are fissures, at least in the rectum judging by the blood. Possibly in the vagina as well. What causes those constant fissures, however?

The most reasonable theory which I have so far discussed with my GP is that there's a build-up of fluids inside the vagina and/or around that area, which causes the rectal wall to bulge inwards, at which point regular toilet visits would shred this wall, causing constant fissures. Those fissures and discomfort experienced each month also only occur on the side between the rectal and vaginal walls.

As for the actual cause behind all of this, and possible outcomes, there are many possibilities. Everything from rectal wall spasms to ovarian cancer and lots of secondary causes. The coming months I hope to learn more.

Yet it's been thirteen years. Thirteen years during which everything rapidly became clear to me what had to be done and examined. It still feels as if doctors are only just catching up on the need to actually examine a hermaphroditic body for possible complications due to the irregular formation of certain tissues and organs on account of having two distinct sets of DNA try to steer the same mechanisms.

It feels as if the only reason why I'm being taken more seriously now is because all of those issues which I was worried about for over a decade already are now finally beginning to appear. Finally something which they can understand and act upon, maybe. It's too easy to feel bitter at this.

Apparently certain types of cancer are more prevalent among hermaphrodites, specifically those of the reproductive organs. Sepsis is also much more common, for when fluids get trapped and become infected. I have read up on this and tried to convince doctors of the urgency to determine which organs I have in my abdomen for this reason. Instead all I got was one side telling me that I had a normal male body, and the other side that I have a hermaphroditic body. Attempts to focus on the latter did not pay off.

What might save or still end up killing me is time. Simply wait long enough until things start going wrong and you can present concrete symptoms to doctors. From numbness and pain in one's limbs to abdominal distension (from 70 to 82 cm), the aforementioned fissures accompanied with bright red blood and the sensation of a lot of fluid being trapped underneath the skin in the vaginal area. They have their work cut out for them.

Yet nobody still cares about me being intersex.

I guess that the gifted thing keeps haunting me. I was always the one to question everything. The child who preferred to hang out with adults instead of with those their own age. The one who couldn't stop learning, questioning and dreaming. I cannot just 'be'. For me 'Hell' is a life lived without meaning.

You know what lies at the end of every single 'why'?' question? Nothing. Because the universe just is. There's no reason for its existence, just like there is no reason for our own existence. We exist because along a line of ancestors there were always those who had to mate and produce offspring. Why? Because.

Yet the universe is not without meaning. Through its existence it produces stars, galaxies and much, much more. Life is the same. A life lived well produces its own meaning. I guess this is the primary reason why I feel as if I'm being suffocated when I consider a reduction of being able to live. To do a menial, meaningless job working on something which in the end nobody really cares about, for example.

In some ways I am a thrill-seeker, I guess. Just not by risking my own life and health, but by seeking new intellectual challenges. By challenging certainties in science and technology. To me that is what gives life meaning. Any other existence is too terrifying for me to consider.

This, too, makes me a poor fit for society.

What more is there that makes me truly unfit to function in society and prevents me from feeling like I belong or am needed anywhere? Nobody needs my traumatic experiences recounted to them, I'm sure. What happened to me when I was five years old is my own problem. It's my responsibility to make sure it doesn't interfere with me pretending to be a Normal Human.

Many things which are 'different' about me are mostly just quaint, though, I guess. From being ambidextrous, to being a super-taster and so on. They just make me 'slightly odd', I reckon.

I guess that in the end the question with which I am left  is a simple: where to from here?

Without a job or anything else to keep me tied down to this country of Germany, I am free to go and work and live anywhere in the world. Assuming someone needs me. Something exciting. Something hard and challenging. Something that can keep my interest.

The simple trick is to find the right employer.

Or just go into academics and forget about the 'real' world :)



Tom Farrier said...

Hello, Maya:

This is a really good post. It's good to see you more like yourself.

I think I've had the same thought you have had about the doctors wanting to wait until they see something they recognize and have some idea about how to proceed. They haven't figured out yet that they -- like the rest of the world -- need to be open to learning instead of just reacting. I know it must be exhausting to have to keep telling them to do their jobs, and then HOW to do their jobs, but you're worth it! ;-)

As I've mentioned before, I like how you think. I see things I recognize, especially when you describe how you look at the world, your curiosity, and your interest in figuring things out. When you mention seeking thrills, I'll bet you get those feelings from risk-taking, but intelligent risk-taking. You take on a challenge to body and brain.

So, a thought for today. Think about learning to fly. Yes, there's another tiresome medical exam involved (but with an entirely different kind of doctor, one who might actually rise to the occasion). However, somebody on Quora once asked me what it's like to fly. It's heart and brain and hands and feet all working together, each taking their turn at just the right time.

The best way I could describe it to the questioner was by stepping through my very favorite thing to do in a helicopter, which is called an "operational approach": see where you want to land, and go from where you are to that spot as smoothly and efficiently as possible, mindful of possible hazards you might encounter all the way down. It's like drawing a perfect line in the sky.

The intellectual challenges are there, especially when you take off in bad weather and land in bad weather. It's magical being up in or above the clouds, and it's amazing to pop out of nothingness to see your destination in front of you.

If you're a little crazier than I am (and rescue helicopter pilots are more than a little odd sometimes), you could try your hand at gliders. Soaring is extremely popular in Europe, especially in southern Germany and Austria. I've done it several times, but I prefer to have an engine to let me land where I wish, thanks. You, on the other hand, may like the extra betting of your neck!

Please remember: everyone is unique. Maybe some are "more" unique than others,but that just makes them even more valuable. You have friends who wish you well (including one here who is safely at arm's length, an ocean away).

Best, Tom F

Tom Farrier said...

Perhaps worth a small smile.