24 hours in the life of a woman

The road that goes from Gainesville to Charlottesville, in Virginia is a very long one. It’s a two-hours drive from our home. I put my six months old baby in the seat beside me. To the right side, so that I can see him. It didn’t really matter in fact because he slept all the time. It certainly was due to the slow rocking of the Mustang.

We are April 18th, 1984.

Nineteen eighty four. Reminds me of something, but of what ?

I finally will know about my baby’s disease. Its not quite a panic yet but still, I wish they find what he has fast now. That they can give me the right medicine to cure him. It is not normal that he can’t hold his head alone by now. That his muscles seems so apathetic. That worries me when I compare him to other children of the same age. Thus, that’s why my pediatrician took this appointment with those specialists. He seems even more anxious than I am, but he still lets me go to Europe, with our son, to introduce him to our family. We went to Switzerland and then to the south of France. He waited for our return to send me to the academic hospital of Charlottesville.

My husband is in France right now, where he teaches to some young (and less young) engineers the mysteries of the electromagnetic compatibility. He will be away for three more weeks. It’s very long and I miss him so ! Especially today. I got used to his frequent travels for his job of course, and thus, I carry on my shoulders the whole responsibility of our household. Loneliness is something that I know too well. I would even say that I grew up with it. I drank it at my mother’s breast. Today, I don’t even know that some life exists where it is less present. A life where men know how to protect their wives…

At lunch time, I stop the car in front of the Pizza Hut. As in all these American restaurants where alcohol is sold, the windows are covered. It would not be a good thing if honest folk from the outside was influenced by the bad example of drinking people ! It sure is an excellent principle of course, but having been raised in a country where it is normal to drink everywhere on all occasion, I find it very strange. Vaguely tinted of hypocrisy, when I refuse indulgence.

Meanwhile, if from the outside, those restaurant do look like small bunkers ; from the inside those places are always so nicely decorated that it’s easily forgotten that the outside view is forbidden. Anyway, what’s the matter, when plunged into a drink ?

They gave me everything I needed to heat my baby’s lunch. My son started to chirp happily while I tried to get him to eat. There was food everywhere. Helping me with the other hand, I nibbled into a pizza piece. We were very happy there, together.

On that day, I had too many problems, but when we were alone at home, Julien and I, the bathroom being close, I did enjoy, sometimes, with an accomplice smile, telling him : « NO, do not make ppppppppprrrrrrrrrrrr… »

Within a second, I could see my son folding his small mouth, preferably full of mashed carrots and potatoes and, within a move of his own, splashing from left to right on all that surrounded him. We played like that until, still laughing, I took him along to the bathroom to clean it all. Anyway, today we remain serious and, after the meal, we pack up everything and keep on our trip.

At 1 :40 pm I find a place in the huge parking lot of the general hospital. It is clearly marked down. That goes quickly. My appointment is at 2 :00 pm. I get my baby, all his stuff and mine. Last night when I was explaining to my neighbor friend the schedule of my day, she told me : « you should take a small bottle of whiskey with you ; one never knows, that could be useful ».

Which I did.

They bring me into a very small exam room. I install my son on the bench and I wait.

The doctor arrives. After the usual greetings, I strip my son a little according to his indications.

He auscultates him. Then he leaves the room saying to me that he’ll be right back.

A few minutes later, he reappears.

With a colleague.

An old man.

A man who knows how to “tell”.

Me : so ?

He : it’s not good.

Me : what’s the matter ?

He : it is a terrible disease.

Me : what disease ?

He : Werdning-Hoffmann.

Me : are you sure ?

He : the symptoms are too obvious to leave any chance to doubt.

Me : what will happen ?

He : Death.

Me : when ?

He : within a maximum two years, maybe less.

Me :…

He : be brave.

Then the other doctor takes over. He explains to me, through the thick fog which has just invaded my brain, that they will still have to make a biopsy to confirm the diagnosis. And that the must hospitalize my child for that. Also, some eminent professors will want to see him (since it is some rare disease it deserves a visit doesn’t it ?) and thus, I must wait here until somebody will come and fetch me.

Will I hold out ? Would I like a coffee ? Something ?

In front of my lack of reaction, they end up leaving the room. As soon as I put him his clothes back on, my baby goes back to sleep. As if it was not about him any more. It wouldn’t take much for me to get upset that he does not participate a bit more… However, I settle down on a chair, in the opposite corner and I lit up a cigarette. I can blow the smoke into a tiny ventilator which opens close to the ground. Then I take my small bottle of whiskey and I drink it entirely.

Starts then a long, endless waiting.

What is left to say ?

I do not realize yet what is happening. I just know that it is serious. I am going through all sorts of reflections. There has just been an earthquake in Mexico City. Thousands of deaths. One more, one less, what difference does that make ?

I am saying to myself : « well then, I too have a story now, a skeleton in my closet. Never again will I be able to tell all about my life, just like that, without worry. From now on, from that very moment on, I will have to choose my words, to jump over the delicate passages, to avoid to shock the sensibilities and least but not last, to avoid attracting the vultures, attracted by the smell of catastrophes.

My thoughts turn endlessly. The little room fills up with smoke. My baby sleeps. I cannot cry. I wait.

Before my shut eyes, the film of the last few months goes over and over again. The battle that I had to fight, to get the right to bearing this child that my husband did not want. It was so easy for him to be so egoistic when he already had two beautiful girls ! But from the day we knew we were going to live together I had told him that I would be a mother one day. I never betrayed him. I knew it. I did not cheat on that one. Then why ?

And now. Am I cursed ? Is this the price to pay for having destroyed a marriage, a family ? The family he left for me ? Just because he got me in his skin ?

The nurse comes, finally. She leads me through kilometers of corridors to the pediatric part of the hospital. She shows me a bed. I ask her whether I can sleep there tonight. I don’t want to leave my child alone. She shows me an armchair in another room. I will just have to move it in when I want to sleep. It unfolds easily. After that I try to warm up, with my bottle-warmer, plugged into the unique electrical outlet, to heat a small feeding-bottle. Then I feed my baby. It takes time. Now I know why…

Eventually I have a look around me.

This room is a nightmare.

There are ten beds in a terribly restricted space. In Europe, there would be only two beds in there, and even then. Everywhere there are infants or very small children. The oldest must well be three years old. One of the newborns obviously suffers from elephantiasis, another one is completely deformed, another one has pipes everywhere.

Nobody is looking after them. Supervising them. Singing a song to them. My own baby is not hungry anymore. He falls asleep.

I go to the reception desk and dial the number of my best friend. Lorie answers immediately. I tell her, very fast, quite rudely to get there as soon as she can with some very strong liquid. Then I hang up and wait.

She quickly drives from Richmond. Within one hour she is there. I show her my son. Her godson, since she is her godmother. Briefly I inform her. I am cold, surgical. Still not affected.

When she cries, I do “accompany” her, but I almost force myself. I don’t want to know anything. Then we leave. All night long we wander through the city. From one bar to another, one restaurant after the other. I buy her supper in the best place in town. And all night long, as I will do for the following six months or so, I try again and again to justify what is happening now to my life. I drink so much that I don’t even know how I got back to the hospital.

I wake up at 10 am on the next morning on the armchair beside my son who always sleeps apparently. I have a terrible hangover. A bit later, from where I sit, I can see an eminent professor, surrounded by his class of students, examining my baby. They do not even have a look at me. Obviously I am of no interest to them. Not sick enough I guess…

Lorie is already back to the newspaper that exploits her in Richmond ; the bottle of Balantines sits on the ground, partially hidden by the small blanket I found somewhere last night. I take a mouthful of it to get awake, which has for immediate result to make me throw up what is left in my poor stomach. After that, I feel better.

I feed my baby and, once he is asleep, I go down to the cafeteria with the hope of grasping a cup of coffee. Just before it, I see on one door the sign : “library”. I enter, I spot a computer in a corner, I type : « Werdning Hoffman disease » and I read the results. It is not my country. It is not my language, it is purely medical jargon but each word strikes me as if it was totally current term, transparent.

I take notice of this new gift of perspicacity.

Very amusing indeed.

Then, after having made all the copies I would need to explain « the case » to everyone later, I move towards the cafeteria.

I am halfway between the door and the counter when the truth catches up with me.

Julien will die !

I fall on the floor, on my buttocks, under the shock of the obviousness. My throat lets out a kind of raucous and discordant sound.

Julien will die !

My baby.

My child.

I start to cry.

I am alone.

So lonely.

People almost have to jump over me to reach the counter.

Minding their own business.

Paying their own coffee.

Nobody stops in front of this very shameless person, who shares her sorrow with anybody. Each one of them carries his own, incomparable, load or sorrow, and cannot, just CANNOT, allow himself to stop, if only for one second. It is a matter of survival. All the others here, are discrete.

In America, in 1984, a doctor throws you in the face the death of your child, just like that, coldly, but death remains as taboo as anywhere else. There is a dichotomy between the pain that is felt, and the face shown to the outside. And for me, young decadent European woman, I am quite unable to understand it all that. Especially now !

What I do not know either, and that will take years for me to understand, is that I am a foreigner here. Oh, not one of those foreigners who brings with her the supremacy of the entire old continent, no, just a simple immigrant, like any other one coming from the south and who is so despised here. Like all those people starving and hoping to find food and security in America.

As for me, who came, in my immeasurable naive conviction, with the insurance of bringing some intellectual food to those « uncultivated savages » it is difficult, even impossible to perceive or understand this incredible feeling of superiority of the inhabitants of my host country…

Down by my shame, an eternity later, grasping a crumb of courage, I rise up and, in a ridiculous attempt to escape from reality, I grab a plate and fill it up.

I pile up. A roll, a life, a cup, a life, a bowl of cereals, a life, some jam, a life.

LIFE. LIFE. LIVING. ALIVE. TO LIVE !

What does that mean : « to live ? »

I am not hungry. I am unable to swallow anything. Leaving my full plate on the table, I go back to my baby. I feed him. He goes back to sleep.

They call me on the phone. It is my husband. The father of my child. I tell him : « All is well, nothings wrong, they still have to make analyses, I’ll call you back ».

Then I find a phone booth and I settle there. The remains of my Whiskey bottle on one side, an ashtray in the other one. I lit up one cigarette after the other. Nobody notices. It is normally forbidden inside a hospital. How come they let me do this in total impunity ? Does everybody know about my ordeal ? Or perhaps it is because I look so obviously like a stranger that nobody dares saying anything ?

In fact, I am just a tiny ant in a huge factory, and each one of them here is so busy with its own sorrows that it does not have the courage to carry some more on its shoulders.

I call the operator to try to get a long distance call. Theoretically, they only give you the communication when someone can certify that the call will be paid. I don’t know if it will work since there is nobody home to certify anything, since the one supposed to certify is me and I am there all right… And I would like to talk to my mother. All over there in Switzerland. Please… Curiously enough, the operator does not make any objection. It’s a good thing, I’m starting to have a furred tongue.

The phone rings in Lausanne, Switzerland. My step-father answers.

Me : ‘please get Mom on the phone for me will you !’

He : ‘why ?’

Me : ‘do as I say, it is an emergency ; what I have to tell, I won’t be able to tell it twice.’

He : ‘Here she is. I give her to you. Are you sure I can’t help you ?’

Me : ‘Yeeeees’

She : ‘What is it my daughter ?’

Me : (crying) ‘Julien will die. His muscles are going to weaken and his diaphragm too, he won’t be able to use his lungs to breathe and his heart will stop beating, he will choke to death… oh, Mom !’

She : (her voice breaks, powerless, five thousand miles away) ‘it’s atrocious !’

Me : ‘I am so sorry to tell it this way, but I cannot carry this alone anymore… I’ll call you back.’

Click.

A doctor came to see me. He gave me an appointment for a biopsy on the following Monday, at 2 pm, one level below.

I could not put up with the idea of staying two more days in this hospital. In this « pain factory », before they would finally take care of my child. I signed a discharge and I left. I would come back on the next Monday. Never mind the four hours drive…

I got my baby back. I packed up everything in the car and we started the long drive home. After a while I had to get out of the car to throw up.

I looked at my watch.

Twenty four hours had passed.