Tuesday, March 04, 2008


It was Saturday night when I received the email. The heading read ‘Do you remember…?’ and inside were photo attachments and a note from FP. When I opened the thumbnails I was surprised to see the brightly coloured photos of smiling people; photos I'd forgotten had even been taken when FP and I stayed with his parents last August. The pair of us curled up together in a multi-coloured hammock in the backyard, suspended from the apple tree and the fence, our eyes closed, our skin pink from a day in the sun. FP, his family and me dancing in his parent’s living room to Claude Francois, fingers pointing in the air and our cheeks rosy from the wine. Another photo shows a close up of FP and me at the table outside, I’m wrapped in his mother’s pashmina and the sky is darkening beyond us.

I enlarged the photographs on my screen and I cried. Big fat tears rolled down my cheeks, burning my skin like acid. My shoulders shook with the heaving, sorrowful breaths I gasped.

I’d forgotten how deformed I’d been mere months ago. My nose was not a nose, it was hideously deformed, covered in bumps and swollen skin that belonged on a toad rather than my face.

At first I felt disgusted, I literally recoiled in horror – I’d been behind my face for all that time so I didn’t realise how extremely vulgar my disfigurements were – and I weeped. I felt sick to the stomach and hideously ashamed. I couldn’t work out how or why FP stayed with me throughout that terrible, terrible time in my life. I was the elephant man. I was fucked up. I was revolting.

And then a wave of anger came over me. Anger at myself for being ashamed. Why was I so turned off by myself? It was never my fault, I never asked for a disease. I felt so angry at my own initial reaction to pictures of a broken, ghostly version of me that I shocked myself. That girl in the picture had no control over her face. She was a victim of a cruel act of nature. I had been that girl. So how could I now look at myself in the photos, knowing exactly how deeply, profoundly, intensely sad I’d been then, and judge myself the way I’d always been terrified others would judge me?

And now, as I type on my laptop which is currently warming my legs as I sit cross legged in bed, my hands flutter towards my face every ten minutes or so to feel the smoothness of my nose, the swollen skin vanished into thin air.

I need to keep checking.

‘Cured’ is not a word the doctors feel ready to use. I don’t know how long is an appropriate length of time before I can say ‘I’m all better’ without living in sheer terror that I have jinxed things but it has been several months now and one thing is for sure…I look like me before I got sick.

Again I find my fingers tracing the smooth outline of my nose, drinking in the crevices of a nose that are deemed ‘normal’ and I am hit with an immense mixture of feelings.

Terror burns my gut with the thought that it could all come back again, that this is just a period of remission, that I’ve more to get through. There's an enormous sense of relief that it’s coming to an end. Anger lurks deep in my bones; anger that I had to go through it at all. Sorrow overwhelms me, for all the pain I discovered.

But most of all, there's gratitude. For I am a tuberculosis survivor and not a mortality.


Anthony said...

"I couldn’t work out how or why FP stayed with me throughout that terrible, terrible time in my life."

the answer is real easy : cause i loved you and i still love you. I've never stopped loving you darling, even in hard time and you know it. Love is an incredible feeling that you feel inside you and i always felt it stronger&stronger since the beginning and even before... i'm really glad u feel better. The hardest time for me was when you were sad & depressed, not when your nose was the worst.
Je t'aime ma Princesse X X X X


Peach said...

good for you for surviving, it sounds dreadful but you did survive... of course you'll feel bad if you see the bad effects later on now, poor you... try to keep reminding yourself you're better ( and were still lovable when you weren't )


Passementerie said...

You poor, poor love. I'm so sorry you went through all of that - TB is something we (I) associate with consumptive heroines in Victorian novels, and we (I) forget that it's still around, even in our protected little world here in Western Europe. I'm so glad you're better now.

T.D. Newton said...

Even better than surviving some disease, you should be proud of yourself for surviving your own depression (and many, many other words that are too negative to voice on a comment to such a great message). Surviving a disease usually has more to do with medicine, doctors, hospitals, and other sterile and matter-of-fact terms.

But staying to fight another day, not giving up, pressing on when the future seems bleak, grasping the belief that things will be better someday (and not letting go) - THAT takes strength, fortitude, bravery, and (as you eluded to) love.

For some of us, a past we had to "survive" is a badge of honor. That's part of what makes us human, I think.

Ghosty said...

I would have commented sooner ... but that would have been right after your FP's comments, and what in the world could I follow up with after that?

Needless to say, we are all proud of you ... and I have learned much about steadfastness and bravery from you, young lady. You are a champion in more ways than one!

Leah said...

Congrats on the months you've lived TB-free and also happy. You are a survivor not a victim, you are a survivor not a victim, say it with me!

doow said...

FP left the most perfect comment. Ghosty's right, how can anyone follow that? Well done on getting through what must have been an awful time.

Princesse Ecossaise said...

I agree, FP's comment was so beautiful that even I wasn't sure how to follow it!

FP you truly are the most amazing man I have ever met in my entire life and I cannot believe my luck that out of all the 6 billion people in this world you chose me.

I love you forever and ever Amen...

(J'ai une petite larme!)

Princesse Ecossaise said...

Peach you kind of hit the nail on the head, the only way I am able to feel better after having seen the photos of me back in the bad days is to remind myself that it's over (or at least over for now - can't speak too soon!!!!) I'm on the road to recovery, I'm on the road to recovery, I'm on the road to recovery!!!

Passementerie my dear you are so sweet, I love the way you're so chic in everything you do, even leaving comments! Who would have thought it? I am a consumptive heroin! Just hand me a corset and a pretty parasol and I'll be grand! :-)

Princesse Ecossaise said...

TD I agree with you, and I am certainly proud for being able to pull through and face up to so many awful things like people who stare and nasty children point. I am proud because it was not long ago that I was down on my knees wailing with utter desperation begging to die.

I am so proud I made it through all that but I am also rather astonished that my body managed to survive at least seven years of this disease without any help from doctors to treat the illness.

Remember I was misdiagnosed with sarcoidosis? I find it incredible that I was put on chemotherapy medication, steroids and so many other toxic immuno-suppresant drugs to treat sarcoidosis and that my body still managed to (try to) fight an infection of TB!

Man just thinking about it scares me! How on earth did this happen?! It's amazing, when you think of the facts, that my body didn't suffer more (although I'm super mega glad, because a fecked up scar right across my face was enough for me, frankly).

But yes, I am so very proud and extremely grateful that I managed to get through it and didn't give in (even when I desperately wanted to). Now stick that badge of honour on my shirt and call me a survivor!

Princesse Ecossaise said...

Ghosty thank you, thank you, thank you. Your words mean so much to me, they really do.

Leah I am a survivor not a victim!! Haha, it feels good!

Doow Thank you so much for your sweet comment and thanks to you and many other readers who left messages of support and encouragement when I was struggling with dealing with the illness only a few months back.

sugar007 said...

Princesse,you have come so far and you have had to be strong and cope with so much. It is perfectly normal that you have feel the way you do. Your experience with this has made you strong. Just remember how far you have come and you have so much to be proud off....

Jane said...

I don't have anything else to say that hasn't already been said, but I'll happily echo everyone else.

You are a true fighter, a wonderful girl and a delight to know in blogland. Thank you for being brave enough to share your life with us, and thank you even more for not giving in. You are an example to us all.


Princesse Ecossaise said...

Sugar thanks hon it's good to hear from you, hope you're doing well!

Jane your words are really beautiful, I feel a bit of a fraud to accept all these lovely comments because anyone in my position would deal with it the same way as I did, I'm no hero. But I really do appreciate everyone's messages and thank feck for blogs eh? I've made so many blog friends through this little hobby and you, pretty lady, are one of them. Mwah x

ColbyPants said...

Amen to gratitude ;)

I know someone in a hospital in Ft Wayne, Indiana right now fighting tuberculosis. Getting over it is a big deal, good for you! Diseases like that are quite the bitch, and it's a testament to you that you got past it.

Rock On!

Despina said...

I'm listening to James "Sit Down" right now. I just have no words of my own. But you're an amazing girl!

Princesse Ecossaise said...

Tom I am so, so sorry to hear about your friend, my thoughts and prayers go out to him. This is a horrible, horrible disease, it shouldn't even be around today. At least your friend is in the right place to be treated for it.

Despi I left a few comments on your blog but I'll just say it again here, it's so good to hear from you. I'm so sorry that things have been difficult the past few weeks, I'm here for you x

joy suzanne said...

Princesse, I'm soooo happy to read that your TB diagnosis was right, and that the meds have done their thing, and that you're feeling good again. Wow... tuberculosis...

Princesse Ecossaise said...

Awww thank you JS! I'm still kind of in shock and every day I wake up terrified that it's going to come back! But fingers crossed that this is it. Tuberculosis...I know! I'm a lucky girl to be where I'm at today after contracting that illness and holding onto it for over 5 years! A very lucky girl...phew.