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 man I loved? Let him nurse me? Watch me fade away?
It is killing me (ha-ha) that I won’t be able to have kids. I want to be a mommy. But even if I had a baby tomorrow, I couldn’t look after it. And actually, a pregnancy would probably kill me anyway. I so wanted to be a parent. I wanted to do it right. I was going to be the best mother ever.
My only hope is that things develop fast enough that a cure turns up. I’m seriously clinging to it. It has to happen. I don’t want to die. It’s not fair.
I really need to sleep now. I’m going to try soon …
“Every day is so wonderful
But suddenly, it’s hard to breathe.”
I’m going to have to live life in the moment. Speak my truth. Take what I want.
Things I want to do:
Diving lessons. Stardust. Get scooter. Mani. Haircut. Buy Clinique “Happy”. Watch Burlesque and Titanic. Do a family photo-shoot. Do a shoot with Kita. Do a test shoot … if I’m too sick to do proper modelling work, I definitely want to do a test-shoot with mom’s photographer friend. Ace my exams! Write. Read. See Maike and Chaeli.
Jenna’s journal
Tuesday, 22nd May 2012
11 am; English office
I should be studying. I am not, though. I just Googled “dealing with a terminal illness”. Never thought I would have to. To think that I used to worry about getting cancer when I reached middle-age. Or was stressing about skin cancer. I’m not going to live long enough for any of that to take its toll. Neither is walking on my toes going to be an issue. It’s most likely that my hips and back will suffer from this immobility. All that work to get me fit. To never have a filling. To stretch me out. What was the point?
Although I suppose the fact that we were planning for the future was a privilege in and of itself.
I’ve had an incredible life, I really have. Maybe I have used up my share of happiness? Maybe that’s why … like I need an expiry date or something.
So apparently the stages I will probably go through work something like this:
Shock; Denial; Anger; Grief; and Acceptance.
I could probably have made that up myself. Will I write people letters? What will my last words be?
“A penny for my thoughts?
I’ll sell them for a dollar.
They’re worth so much more
After I’m a goner.”
“… Funny when you are dead how people start listening.”
I think I need to work now. It might be a nice distraction.
Still Tuesday
School: 3:08 pm
Waiting to be collected
English office
I just wrote the start of an autobiographical piece, on my laptop, about finding out I was going to die.
I seriously can’t handle this. I’ve never been so scared in my (unfairly short) life. This can’t be happening. It’s so not right. Not fair. Clearly, I’m still in shock ’cos this feels like a bad dream.
How do I act at school? Partly it’s a nice distraction being here, but partly it feels so fake. If I were being real, I’d be sobbing constantly. Incessantly.
Mom’s fetching me.
In rare moments Jenna would share her vulnerability and pain with me and Stu, but mostly she was private and inordinately strong. She chose to respond with dignity, grace and courage. She imagined her sadness would drive a wedge between her and her friends and believed they shouldn’t have to cope with her fear. So Jen chose to make it easy for people to be around her.