The last time I wrote about the surgery I underwent for my Parry Romberg Syndrome I’d just undergone my 6th or 7th procedure – I’ve lost count! Although it was uncomfortable as usual, it was fairly routine. I’d become used to the process of Coleman Fat Injections in which small amounts of fat are removed from my abdomen – never enough to make a visible difference, dammit! – and then injected into my face to correct the asymmetry. Similar but much more painful reconstruction has also been carried out with fascia lata from my thighs (sheets of connective tissue which attach, enclose, and stabilise muscles) as well as a substance called Alloderm: cadaver skin.
Alloderm is a product produced from deceased donor skin and treated until only the collagen matrix is left behind. It’s like a micro-lattice used to reinforce the weakened tissue of the living which can then form scar tissue around it, until it is eventually reabsorbed into the body. When I worked in mortuaries full time I was frequently a part of what we call the ’tissue-harvesting’ process which refers to skin, bone, tendon etc being retrieved from a deceased patient who has kindly donated it to the living. (Shameful self promotion here but there’s more about the process in my book , Past Mortems, released Spring 2017). What strikes me now is that although at the time I knew the benefits of using donated skin on live patients as topical grafts of for breast reconstruction after a mastectomy, I never knew it could be implanted for reconstructive surgery until I was diagnosed with PRS and we explored all the options.
The staples, the stitches, the pieces of the deceased attached to the body of a young woman of course puts me in mind of ‘The Bride’, made for Dr Frankenstein’s Monster, particularly the version from the 1935 film, below . I often jokingly call myself The Bride of Frankenstein. Despite the humour in that, it’s actually a more suitable trope than I’d originally thought. Parry Romberg Syndrome has a higher prevalence in females and typically appears between 5 – 15 years of age. To be a woman in a society which still places high importance on their appearance (and of course, to an extent, the other sex) and suffer with a condition like this which for me, appeared in my turbulent teens, has caused problems that I never would have anticipated. But I don’t just mean physically, I mean mentally. And I also mean the guilt. I constantly ask myself the question “Am I just being vain?”
There are so many lovely people out there, as well as my family and friends, who say, “But why are you letting them do this to you – I can’t notice anything wrong with you?” or “You’re beautiful, why do you need surgery?” But for every person who says that there will be a stranger who asks me “Have you been in a car crash?” or a colleague who says, “Oh you were born with a cleft-lip, weren’t you?” and it’s that which leaves me feeling cold in the pit of my stomach. (Those things have actually happened, I’m not making that up. I mean who says that to someone’s face?)
Then every now and again I might post a selfie on social media because I caught myself at just the right angle; because for one day out of so many others I don’t hate my face and myself and I feel like sharing that happiness with the world and showing others with PRS that they don’t have to hide either. Thank you Instagram filters! But then I’ll have someone post that I’m attention seeking or vain….
But I realised it’s not about vanity, it’s about familiarity. Of course everyone has times when they want to look their best – maybe for a job interview or a date or their wedding – and I suppose to a certain extent I want to look ‘my best’. But I wasn’t born looking the way I look now and I didn’t grow up that way, it crept up on me over the years. Despite having PRS for around 15 years my brain still doesn’t register it so when I wake up in the morning I’m taken aback by what I see in the mirror. I don’t have these surgeries to ‘make me beautiful’ – that’s not the aim. I simply want to look in the mirror and not see a stranger, I want to see something familiar: a friend.
After this most recent, more complex surgery in which I had two calvarial bone grafts removed from the top of my skull and implanted behind my left eyeball to push it forward, there were complications. What should have been a routine surgery ended up with me being rushed into a second emergency surgery to have some of the bone extracted due to increased intra-cranial and intra-ocular pressure. After two general anaesthetics in four days (and a lot of morphine and codeine!) I had time to lie there and just think – and I decided to stop chasing the phantoms of the past. No more surgery. It’s time to start making friends with the face I have now and stop putting myself under extreme pressure and great risk just to try to resurrect a young woman who symbolically ‘died’ in her teens the minute this condition began to take over.
I’m a chick, I work with the dead (closer than I ever thought I would!) and I’m happy to be a true Bride of Frankenstein. I’m lucky for the life I have and what my surgeon has achieved so far – there are many people out there with far more serious PRS symptoms than mine, and of course many others with life-threatening conditions. It’s time for me to move on and help others with the same issue who need advice so anyone who needs to feel free to contact me via this blog until I get something permanent set up. And it’s time, of course, to say a huge thank you to everyone who has supported me: both the living and the dead.