a deep breath. “I’m coming,” I said quietly. “I’ll be there in three minutes.”
Jenna was waiting in the school carpark, hiding behind a tree so that no one would see her crying. We drove home clutching each other’s hands across the gear-box, tears streaming down our faces. The silence was heavy. I knew I couldn’t take the pain away and I was nauseous. Once home I helped Jen gingerly out of the car and up the steps to the front door. We stood there hugging, clutching each other for the longest time. Her face was buried in my chest, her fragile body shaking against mine. Oh God. Oh God. Please help me to take this pain away.
We stood for a long time before she pulled away. She looked up at me, huge brown eyes brimming with unanswerable questions. Then she nodded imperceptibly, turned away and slowly walked down the passage, closing the bedroom door softly behind her. In the privacy of my bedroom I doubled over, clutching my stomach, and wept and wept. There was no way to make sense of this. My head ached. An hour passed and I couldn’t stay away from my baby any longer. I crept into her bedroom with warm, sweet tea and climbed into bed beside her. I wrapped my arms around her and rocked her gently back and forth. For a long time, we cried together. Jen was so sad I thought she might break in two.
That day I promised we would do everything we could. That we would never give up. We would fight. I promised she would never be alone.
That heartbreaking day, when she was alone in her bedroom, this is what Jen wrote:
Jenna’s journal
Monday, 21st May 2012
Home; my bedroom
I’m lucky if I have 10 years left. No long life for me.
No career, no opportunity to change things or be promoted. No kids. No kids! Because even if I last double that, 20 years, then at 37 I would still die while my kids are young. It’s not fair to them. And who wants a mother who can’t take them hiking, or play ball, or even prepare them dinner?
I will not get better before I get worse. Never again will I run, jump or swim in the ocean. I’ll never learn to surf, ski or scuba-dive.
I have to cling to the hope that the medical experts will develop a cure.
What a pathetic hope!
I’m 17 and yesterday I basically found out that I have either:
Two years left (pulmonary veno-occlusive disease)
Seven years left (pulmonary veno-occlusive disease with successful lung transplant)
10 years left (idiopathic pulmonary hypertension/CTEPH with good meds, all the right treatments and maybe a successful lung transplant)
And my quality of life isn’t exactly going to be the best considering I can barely walk.
So now it’s 11:38 am at school and I’m meant to be studying for exams. I’m meant to be learning Afrikaans. How am I supposed to deal with this? I don’t know. I have to alternate between being immersed in life-or-death issues and being distracted by the petty considerations of everyday life. I need to try and make every day the best it can be if I’m going to die soon.
But I’m so scared.
This isn’t fair. I was always going to help people – be a politician, fix people’s lives. Something. How can I die?
It’s not meant to happen.
I want to go to UCT, do a PPE and then study at Oxford. Get a high-paid job doing something I love, like helping others. Design my dream house. Become famous. Write. Meet the right man. Have children. Be a good mother. Retire and travel the world with my husband. Set up a charity. See my children often. Help raise my grandkids. Die peacefully in my bed.
I wanted to swim with dolphins, hike Kilimanjaro, cycle around the neighbourhood. Do the Otter Trail and Table Mountain. Be a prefect. Party hard at varsity. Drink and dance at Plett Rage. Go to lots of matric dances. Enjoy going wild on the dance floor at my matric dance and after-party. Make brilliant public speeches. Star in house plays and help direct them. Be helpful to others. Be the dependable (not dependent) friend. Canoe on the Orange River. Travel. Be a waitress or work at the movie-shop. Model.
Have boyfriends who I can kiss without getting tired. Go out with them and dance all night. Be able to be attractive to people without them having to be nice to/careful with “the sick girl”.
Not be cold all the time. Be able to walk to my friend’s house. Be able to concentrate properly. Be able to go to gym. Get muscle back. Have rosy cheeks sometimes. Go to the Swartberg farm and be able to join in the “boys’” games and throw a ball around.
Be able to have kids. Be pregnant. Then be able to look after them. To live. To watch them grow. Have my mom and dad be proud of me for being a vibrant, empowered woman, not a virtuous invalid.
“If I die young, bury me in satin, lay me down in a bed of roses.
Sink me in the river at dawn, send me away with the words of a love song.”
11 pm – can’t sleep …
When I look back at the beginning of this journal, some of the things I wrote about seem so trivial. It’s amazing how they still bother me, though. It’s like I’m operating on two levels – one where I am trying to handle the fact that I’m never going to be healthy again and I’m going to die young, and the other is concerned about everyday trivial things. Not that everyday things get to me that much, but if I don’t have a great deal of time left then each day needs to count. I’m worried about exams and studying, and I am finding it so hard to concentrate. Partly because I have other things on my mind, but partly because I’m just being lazy. And I’m so out of practice. I haven’t written an Afrikaans essay in over six months!
So that’s exams. Then there are boys, and friends. Friendship. I just feel isolated. I want to be there every break time. I want to sob and have people help me. I would never, though. What would be ideal is to have a giant girls’-night sleepover, which will have to be after exams.
… I don’t know who to tell …
The thing is ... how do people cope? How do they treat you? …
I don’t want to burden them. But I also know that if I don’t tell anyone and I keep it bottled up inside and try to protect everyone then I’m going to cause myself more hurt, and distance and alienate my friends.
I have already had to act, put on a show, and I only found this out yesterday. It makes me feel fake. It scares me that I have to put on a good front for everyone, adults even. To some extent, even my parents. So scary watching your mother sob. I am not a child anymore. I am a full-grown woman.
I know this sounds weird, but I don’t think I want to die a virgin. And not even for the sex, more for the relationship. I don’t want to die never having experienced that kind of love, or intimacy or trust.
I’ve always thought I would never be in a rush to marry. My career came first. But now, what about it? Am I ever going to hear a proposal? And even if I do, would it be fair? Who deserves to know their wife will soon die? And how could I do that to a
