No nerves to get on

The tape holding my wounds together was finally, permanently, taken off last week.

Underneath lay fully healed, quite red, scars. Some small, some long, some lumpy. Some hidden under new flesh. Each scar has its own character. The two circular nipple ones form the border between my old breast skin and new replacement tummy skin. There’s a drop off shelf between the two, like the indent in a saucer where the cup sits. Instead of my new breasts moving outwards to a point, they give the reverse effect. My new boobs look inward.

Scarface body

They are a work in progress of course. The surgeons expect me to have new nipples made by pulling the inside flesh, out. Then a tattoo would be added to create the effect of an areola. The thought of such things makes me shiver right now. But maybe my brain will do the childbirth trick and make me forget that surgery means pain. Not that I’ve forgotten childbirth pain, so I don’t rate the chances.

There’s a straight line scar down from both ‘nipples’ to the under-boob, like the dead body outline of murdered lollipops. These connect to the hidden scars. The second largest ones on my body. They run the length of the underside of both breasts, almost meeting in the middle where they form lumpy ends. When I’m upright, they disappear.

Moving downwards, my newly cut belly button is encircled by hard, red flesh. The belly button is basically made of scar tissue, a product of birth. So scar tissue upon scar tissue means a wiry, unyielding piece of flesh. When they moved my belly button further up, they chopped off the forest of hairy skin that it was nestled in. My ‘garden path’ to more fun areas. But yesterday I spotted a small black hair growing back. It made me smile. My hairy genes overcoming the perceived perfections that surgery imposed on my body.

Then we reach the longest scar. It runs from just above my pubic area, all the way across my body. From hip to hip. For better or worse my tummy is flat but oddly so. Not the flat of the healthy body with a curve here or an indent where a muscle lies. A constricted flat with discomfort as though the organs inside are groping outwards to search for more room.

My body is an unrecognisable configuration marked by an angry map.

This was accomplished in one day.

While I was asleep.

Of course I’m grateful. I made an informed decision to reconstruct my breasts. Time normally allows us to become used to our changing bodies. The very speed of this change brings its own unique challenges. It exists as a duality. A trauma done to my body to save my life.

And as the tape came off new opportunities to heal that trauma became possible. Now I can touch and massage my new, scarred flesh. The surgeons suggest massage as a way to break down the lumpiness you feel in new scars. You can rub away the necrotic (dead) fat cells that were left behind. There’s not that much evidence this works but it does force you to touch your new skin, to reconnect with the painful and the numb.

When I first did the massage, I felt repulsed. All the sensations were being felt through my fingers and my digits didn’t recognise my new breasts as mine. Or as breasts at all. The neural pathways laid down in my brain for ‘breasts’ still expected to find old, huge, floppy boobs. Not these muscle-firm, small, numb things with no nipples. And all my brain was thinking about was that word “necrosis“. Dead. There was no positive spin on this from my sensation-less boobs.

There is one form of sensation still real to my poor befuddled brain. It occasionally thinks I DO have nipples. At random moments I get the feeling that my non-existent nipples and areolae are contracting, fast and hard as if it’s freezing out or someone is flicking them playfully. Except there are no nipples to flick or freeze. This is a common thing. Phantom nipple affects a third of women after surgery.

So I have phantom nipples on breasts that don’t exist.

When the surgeons took the breast tissue, they removed the network of nerves that run through it. I do have a better chance of that sensation returning because my own flesh was used in the reconstruction. But with the return of nerve function could be the arrival of new pain. So it’s a mixed blessing. The breasts as a source of pleasure is most likely gone forever and the way my brain was aware of my body is a hump it’s struggling to get over.

Quality of life surveys find that women who have reconstructions are happier. It’s hard to know how happy you are when you haven’t experienced what might make you unhappy. I predicted I would struggle with going flat and I hedged against that by opting for a reconstruction. But when I read how happy I was supposed to be from reading those surveys, I felt ungrateful and dissatisfied.

Until I found this study. It broadened the definition of ‘happy’ to include; the cosmetic body, the sensed and touched body, the body in action, the sexual body, awareness and sense of self. Standard surveys only explore vaguer notions of satisfaction, quality of life and then focus in on pathological responses such as depression or anxiety. An all or nothing approach to new boobs.

What I found in this study was the acknowledgement that women will have a varied and wide set of responses to the same surgery. Especially so for those who have their own flesh used to reconstruct their bodies. Quotes from the women range from “I feel complete again” to “A breast without a nipple just isn’t a breast I guess..” The individuality of experience as unique to us as our own personalities.

When I read the survey, I let out tension I wasn’t aware I’d been holding. Like stepping into a hot bath after a bad, cold day. It’s an unknowable relief to find I’m not the only one. Not alone in my mixed feelings, my confused neurons, my struggle to accept.

Time may heal all.

For now, I’ll keep touching the nerve that isn’t there.

Nowhere to run

SkyI read the news yesterday and I wanted to run.

Run as far and as long as it took to protect myself and my family.

When Trump promoted the hate of the far right group Britain First, and my own Prime Minister responded weakly, she made me feel scared. Unsafe. She made me feel unprotected from those who would do me harm and who didn’t recognise my right to exist.

I am a child of British colonialism. My mother is Irish, an economic migrant. My biological father Iranian, a foreign Naval officer trained by the British military for their own purposes.

Parents

If Britain First had their racially pure way, I would not even have been possible. Never mind my marriage to an Israeli Jew and my child of the world, my wonderful daughter.

So yesterday I panicked. I spent a long evening curled on the sofa, a deer in headlights shedding fast tears while my husband who has severe depression, tried to cheer ME up. It worked enough to bring me precious sleep until 4am when my mind awoke just enough to let the fear creep in again. So I decided to write it out.

I’ve always felt different in my own nation. The place I was supposed to belong was constantly questioned. “But WHERE are you from?” was a necessary question to be settled to people’s satisfaction upon meeting me. My Irish-ness wasn’t the thing that gave me away. It was always my Iranian-ness that called my status into doubt. My skin colour. Not my accent, not my cultural difference. Just the darkness of my skin compared to others. Occasionally out of frustration I would make people guess.

“French..?”

“Spanish..?”

“Greek..?”

They would never guess right. The only people that ever did were Iranian themselves. Even my features influenced by my Irish genes wasn’t enough to trick their highly attuned Iran-dar.

That my fellow Brits could judge me and find me lacking because of something so basic to my being is tough to take. But it became so ordinary, so normal that I couldn’t even separate it out from who I was. I’d laugh along with my doubters and make jokes about being a double terrorist whammy. “AND I’m from Brixton!” I’d add just for the extra nervous giggle. A joke at my own expense, especially because I actually grew up in the neighbouring Camberwell. But to anyone who lived outside southeast London, it was all one big mystical ghetto.

But the jokes and the questions did their damage and shook my sense of rootedness, made me feel like an exotic plant in the wrong kind of soil. Eventually that feeling drove me to seek out a wider sense of belonging. It taught me the superficiality of the bonds of the national tribe. It gave me the clarity of being on the outside looking in and gifted me an awareness of the dangers of hitching your wagon to one culture or identity. My empathy for others blossomed.

When I got cancer I could have raged at the injustice of it. But I didn’t, not for long anyway. I think that’s partly because I never felt entitled to justice. Racism had prepared me for that. It laid the first bricks of an unfeeling universe as a porous foundation to build my identity on. Cancer found an open doorway to walk into my life. It didn’t care if I was a kind person or a mean person. It didn’t care what I had suffered or if I’d inflicted suffering. Cancer, like racism, didn’t care if I was loved. Or who I am.

Ultimately the universe doesn’t give a shit about any of us and we will all suffer, rage, love and die. Our pain and our existence will go mostly unknown and unheard. It’s an unimaginably hurtful thing to face when you’re the main character in your own story.

I have tried to transform both things into strengths, into ways to empathise with others. But it’s never guaranteed that these kinds of life experiences always end in resilience and empathy. I was lucky.

When I was facing death from cancer, when I consciously stare death in the face now. In a dark room at 4am, when you’re alone and a threat feels existential. When there’s no comfort. The touch of one human to another is all there is. One human voice, singing or speaking when you have little strength to summon your own sounds to fill the void. When I let the unfeeling, uncaring universe into my awareness, I hunt for love. I seek it out and it brings comfort and focus. Because actually that’s the only thing that holds any meaning. When you’re stripped of all your skills, when you’re laid bare of all the parts of yourself. When you’re a body, just flesh in this world without respect for your struggles, in a universe that doesn’t care about your pain.

I think the people who would do me harm suffer from that same existential terror. Everyone on this planet is walking around holding that awareness of a unjust universe in their guts. For some, it’s a tickling darkness at the edge of their vision. For others, a vortex of chaos inside their very being.

We all feel it.

Sometimes it produces hatred and anger and rage. Sometimes the urge to hit out at anyone who comes close, anyone in the immediate vicinity. Or shut down, protect, keep insulated. Some have been swallowed whole by despondency and despair. I feel those things too and last night I wanted to run as far away as possible. To drag up those ill-fitting roots and plant them anew in more hospitable soil.

So I used that mental trick to cope with racism, with cancer, with death. I remember back to the stripping down, the physicality of flesh and the absence of identity. The trick to finding meaning and purpose in an uncaring world is to deeply feel, to exquisitely care.

Until the darkness does finally come for me. When division, hate, fear and belonging all fall away.

For good.

Until then I must hang tight to love, care both for self and others. Neither racism, nor cancer will strip me of that.