I’m human again, back in the land of the living among those who have a
face, a smile and expressions that allow them to communicate.
I’ve been through a nightmare and an adventure at the same time. It’s still
difficult for me to talk about it. It’s crazy, unimaginable. But I’m alive,
I have a future and very strong ties for ever with a medical team which has
become like a second family to me. And a lot of strength, because what I’ve
been through has changed me a great deal.
I don’t like to think too much about the circumstances of the accident that
turned my life upside down. Let’s just say that my dog Tania – a labrador
crossbred with a Beauceron herding dog who had never bitten me before – tore
my face off.
It was during the night, I was stunned and numbed, having taken a great number
of sleeping pills and it’s possible she was trying to wake me up. In any
case, I didn’t feel anything.
When I woke up feeling pretty comatose and groggy, I grabbed a cigarette and
put it automatically between my lips.
It was impossible: the cigarette kept falling out. Nothing was holding it in
place. Without understanding what was going on, I went to the mirror in the
bathroom.
What I saw was unreal: my bleeding face was just one big hole. The nose, the
lips, the chin, the greater part of the cheeks had disappeared. I said to
myself: it’s absurd, impossible. I don’t remember anything, that can’t be me.
The dog was staring at me and licking blood off the floor.
I was in a daze. I called my eldest daughter who was staying at my mother’s.
“You have to come to take Tania out, I don’t feel up to it,” I said. I
thought I was talking normally but she didn’t understand a word I was saying
and she panicked. Before rushing to my home, she called the fire brigade.
Five minutes later she was there, with my mother and my younger daughters. And
then . . . all hell broke loose. The little one yelled. I realised it wasn’t
a dream, it was for real: I no longer had a face.
The fire brigade arrived and made me lie down on the sofa. They tried to wipe
up the blood that was still running because, still a little anaesthetised, I
couldn’t stop scratching myself.
They took me to the hospital in Valenciennes, where everyone was aghast. They
had no idea what to do. I think they’d never seen anything like it. I was
quickly transferred to hospital in Amiens, where I stayed for six months.
There, I really suffered. Completely awake by this time. I was fed through a
tube. Saliva trickled down my neck because there was no skin or lips to hold
anything back. I couldn’t breathe through my nose, as I didn’t have one any
more. I’d slipped into another world.
I didn’t dare leave my room. I already found it hard to look at myself, so the
idea of inflicting that on others . . .
It was monstrous and traumatising.
In front of the mirror, I couldn’t stop thinking it wasn’t me. It was like
science fiction. After a bit, I put a mask on. I only dared to go out into
the corridor if I was protected from people’s stares.
At the hospital, they raised the idea of a series of operations to restore the
bits that were missing, but I wouldn’t have had any lips. My face, without
any expression, would have remained terrifying. It was the most horrible
thing I could imagine: I could never again go out and meet people. I
wouldn’t be fit to be seen by any human being.
I found it harder and harder to talk. And to eat. That’s when the idea of a
face transplant came up. It was the surgeon who talked to me about it first:
“It’s never been done before; you’d be the first. But we think we’re ready.
We’d need a donor . . .” A donor . . . another woman. Who would give me her
face, the thing that is so much the basis of our identity, the home of all
expressions. Another woman who would die.
What family could make such a gesture? What parents? Struck by a terrible loss
and forced to take such a decision quickly . . . because giving a face isn’t
nothing. What reassured me was that the family of the donor would be given
an apparently perfect body, as it would be fitted with a cast of the
original face.
I was told to think about it calmly, but I said yes. Immediately. What was the
alternative? I was given papers to read before signing up. I was told how
heavy the treatment would be, the terrible risks it involved, the possible
complications. But I’d decided. Nothing and nobody could have made me change
my mind. What is a life without a face?
The procedure required the approval of a number of medical ethicists and
officials. That took time. Then, once we had the go-ahead, we had to wait
for a donor. It had to be someone who had the same skin texture as me, the
same blood group, the same kind of cells . . . I was allowed to leave the
hospital on the condition that I would never be more than an hour and a half
away and would be reachable day and night.
Every time my mobile phone rang, my heart would stop. I always had a suitcase
ready but I had to make arrangements for myself, for my new dog – a cocker
spaniel – and for my youngest daughter.
The wait lasted two months. And then, on November 27, 2005, at 6pm, the phone
rang. On the display I read: “Amiens hospital.” I said to my mother: “It’s
the hospital.” We looked at each other without saying anything.
On the phone, the nurse told me there was a donor and that I must get there as
quickly as possible. I rushed home, grabbed my things, called a taxi. That
hour and a half raced by with so many conflicting emotions running through
me; excitement, anxiety, joy . . .
The surgeon wanted to see me again and obtain a last agreement before going to
see the donor. When he left, they got me ready for the operating theatre. I
kept thinking of the surgeon leaning over the donor to examine her. Would
the face correspond to the pictures he had received on the computer? Would
it fit with mine? We were all waiting. When he gave the green light,
everything got underway.
I was put to sleep, they did a tracheotomy, redrew the contours of the hole so
it would match the graft . . . I was launching myself into an incredible
adventure. When I woke up, I would have a face.
The operation lasted 15 hours. I’d told myself I would delay looking in the
mirror, but as they had to take me quite quickly to the hospital in Lyon, I
decided to do it in Amiens, among the team which had lived through the
hellish wait with me.
So the surgeon held the mirror above my bed. And there . . . the hole had been
filled. There was a nose, lips, cheeks. What a shock! It had worked. Doctors
and nurses were standing around me, so moved.
I thought of the donor, of course. She was dead, except for this piece of her
on my face which would be our link for ever. She is constantly in my
thoughts. It’s too difficult to explain – all I hope is that her family know
how grateful I am. She gave me a second chance. I wonder whether they like
hearing about me occasionally. I would so like them to be proud of their
gesture. And to know I thank them with all my soul.
Their identity should have remained secret but it leaked. Mine would, of
course, come out one day. But for those who were mourning their loss, it was
awful. I myself had a lot of questions about the donor’s age, life,
appearance and character, but medical ethics demanded that she remain
anonymous. I knew nothing about her until stories appeared on the internet
and photographs of her were published in Britain. People had fun comparing
her face to mine . . . it’s sickening.
In fact, my relations with the press have been the only disappointment of this
adventure. As soon as my name was published, my family was harassed in an
incredible way. Journalists followed my mother and my daughters, asked for
photographs, interviews. Flowers were left with phone numbers, envelopes of
cash were offered. Reporters slept in their cars at the foot of my mother’s
block of flats, forcing her to leave home for a week.
I was supposed to spend eight weeks in hospital in Lyon. Just after the
operation is the most dangerous time, when the fear of rejection is
strongest. I had my first problem a little before Christmas. The graft had
become red, like the little bit of skin from the donor which had been
grafted under my breast and which is called a “sentry” because it allows you
to detect what’s going wrong.
The doctors reacted immediately. Injections and an increase in the
antirejection medicine. The second rejection was much later, when I’d gone
home. I’d been taught how to examine my face and the sentry every day in
front of the same mirror and under the same light. And that morning, I saw
straight away that the two grafts were red. I rushed to Amiens and was sent
on to Lyon – all hands on deck. The rejection was stopped.
I was able to eat and drink almost normally after a week. But I had to be
careful, because my lips still didn’t feel anything. The liquids trickled
down and sometimes I burnt myself. When I woke up, my first gesture was to
touch my face, to make sure it was still there.
I gradually got feeling back. First the graft itched. It was like having ants
in my cheeks, my chin. Almost like electricity. It was incredible. Life was
coming back. The nerves were working. Even at the end of the nose. After six
months I’d recovered a lot of facial mobility.
The treatment has damaged my immune system, so I can catch any virus around. I
have to avoid contact with anyone who is sick, I mustn’t catch a cold or
anything like that. I’ve downed anything from a dozen pills a day to 20. I
have to live with the possibility of rejection. It’s a terrifying sword of
Damocles. But the medical teams are so close-knit that I don’t feel alone.
So, this face . . . it’s not me. It will never be me. I often look at myself
in the mirror; at first, I did it all the time. I was looking for my old
features and I couldn’t bear to look at my old photographs. It was too
painful. Now I’m getting used to it. But part of me and of my identity have
gone for ever. And I treasure inside myself the memory of what I used to be.
Everyone should think about donating their organs. When you’re not confronted
with it, you say to yourself: we’ll see, I won’t die tomorrow. But you don’t
know. And if you haven’t spoken about it beforehand, your family, suffering
from shock, doesn’t dare to give its agreement. It’s a pity. One individual
can help five others to live after him or her.
In any case, I want to live, to go back to having a normal life and find work.
I feel a great responsibility. For me and my family. For the medical teams
of Amiens and Lyon, who gave me everything. And for the donor and her
family. There isn’t a day when I don’t think of her.
© Annick Cojean/Le Monde
