Bride of Frankenstein

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

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’ll be more about that 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.

stitches2
Staples in my head right now. It’ll be ages before I can do my roots!

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?”

Bride1

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….

essie

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.

the-fixers-delusion
This image, “The Fixer’s Delusion” by Paul McCarroll is one of my favourite pieces ever and I think you can guess why. It doesn’t matter how hard you work – you cannot fix something that’s broken, at least not enough to make it exactly as it was before.

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.

Vain4
I’m so vain, I probably think this post is about me… Oh, wait.
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29 thoughts on “Bride of Frankenstein

  1. Brava!

    You are lovely inside and out. It’s such a personal decision isn’t it? The very best of luck to you. My daughter donated two ribs as part of her surgery to correct kypho-scoliosis and she is very proud to have done so. Kudos to everyone dead or alive who contributes to these tissue banks.

      1. Hi. I love what you wrote. I’m going through the same thing and having my first surgery in January. Thank you for making me feel better!

  2. Thank you for writing such an interesting piece and I hope your recovery is swift. I had to have both of my jaws reconstructed, radically altering the look of my face, so I had to learn to recognise myself again and it took 2 years for the swelling to eventually go down, so while the many operations I went through don’t sound nearly as hard as what you have had to face, I do sympathise and I hope that you are able to help any PRS sufferers 🙂

  3. A very interesting read & I wish you a speedy recovery 😊
    Myself & my sister have attended a few of the events at the museum, we love them! We have offen sat there and said how pretty you are, ignore those who lack tact & kindness they’re the ugly ones. X

  4. Thank you for this post! And though I can not imagine what you’re experiencing, I am sharing a nice little quote I’ve just heard (turning 30 makes you pick on these kind of things): “The flowers of Yorkshire are like the women of Yorkshire. Every stage of their growth has its own beauty, but the last phase is always the most glorious.” (via The Calender Girls)

  5. What a beautiful lady you are. Go forward with pride! I loved your post and will be reading all of them now. I can’t wait to visit.

  6. I admire the strength that goes into just believing in yourself and being you. If that means you decide to forgo other future surgeries, you are being you.
    If you decide later to have another surgery that makes you brave. And helping those that have various levels of PRS is amazing. You do it already in your blog and being truthful.
    To me you are strong, brave and selfless. (Bravo!)

    Looking forward to see Bart’s one day when I get across the pond. 😁
    Get well and have a great week!

  7. Gosh. I’ve always thought you are beautiful. I also have issues with my face, I rarely like myself (I find it really difficult to take selfies because I never like them), and so many times I look at others and go ‘I wish I looked like that person!’ And you are one of them. I guess there’s a lesson here – you never know what goes on in other people’s lives – but also, you’re beautiful just as you are. Cliched, but, I think, true.

    I really admire you, keep on being you. xx

  8. Wow! I’ve been to several of your amazing events, and seen a video of you discussing post- mortems at the Wellcome Collection. I admire you for what you are doing for Barts Pathology Museum, and for giving us opportunities to think and talk about death. I’m so sorry you are going through this surgery. I hope very much that your courageous quirky spirit endures. I recall your lively presence and fearless imagination, and look forward to being able to get to future events. Well done, bravo and thank you.

  9. Hope you’re back to work soon, Carla. I found your blog post so informative about a condition I’d never heard of. I was particularly interested in what you said about wanting to see a familiar face in the mirror, I know my sister struggled with the same issues after a major car accident. Whatever you decide to do about surgery in the future I hope the twinkle in your eye will always remain the same.

    Looking forward to more events at the museum this autumn! Wish I’d been quicker and got more tickets, they sell out pretty quick!

  10. Hi Carla,
    About three years ago, I was diagnosed with Parry Rombergs after some pretty intense atrophy due to a strong topical steroid on my face (long story). After being monitored for a couple of years, and having no further atrophy, it has been decided that I likely don’t have the disease (and/or it is not active). I have had multiple fat grafting procedures, but am still dealing with scarring and bad skin atrophy. I’ve been told that Matriderm may be an option if fat grafting and needling don’t give enough thickness back to the skin. I am wondering if you could kindly email me regarding Alloderm. I’ve discussed it with my surgeon here. Kind regards. You are beautiful, but even more importantly, talented, ambitious and intelligent.

    Cheers, Jennie

    1. Hi Jennie, thanks for your kind words. Re: the Alloderm it’s a bit early to tell how that is doing. Unfortunately, if you google it, it does exolain that it’s absorbed into the body as scar tissue is formed around it. With ‘normal’ people that’s probably fine but with us it may just disappear 😦 I’ll let you know when I know more! X

  11. I came across your Blog when searching for Parry Rhomberg, your story sounds so similar to mine- facial trauma, migraines.. I am really struggling to find a Doctor that knows a lot about the condition and I seem to just get passed from specialist to specialist with no solution. I have been privately seeing a plastic surgeon for the last few years and I am going to have an operation next month similar to your fat transfer and also a dermal graft. I know there is nothing that can really be done, but it would be nice to talk to a doctor to confirm a few things. Can you point me in the direction of who diagnosed you? Thank you so much for sharing and you are absolutely beautiful x

    1. Hi Carol,
      Thanks so much! I hope your operation goes well. My surgeon is Mr Mehmet Manisali and he is based at St George’s Hospital in Tooting, London. He is somewhat of an expert so if you contact the Maxillofacial Clinic there they may be able to put you in touch. Good luck! x

  12. I cannot believe that someone actually wrote that to you on Instagram. Well, I’m not sure you’ll miss having them follow you anyway! 😉

    This was a really interesting post and I knew nothing about PRS before reading, so thank you for educating me! I know this was a few months ago now so I hope your recovery went well.

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