Читать книгу Get me to 21 - Gabi Lowe - Страница 27

Jenna was stoic. No one saw, or knew, the depth of what she was grappling with inside. She saw her therapist regularly, and spoke to me, but mostly she protected everyone around her from her darkest fears. Writing became a constructive way for her to cope and she journalled a lot. There were some exquisitely painful and precious late-night moments when she would share some of it with me.

Jenna’s journal

Sunday, 6th May 2012

In bed, Julia’s house

I am stressed and should be working for exams, but I want to clear my head. I’ve realised, when skimming through my journal, that I have minimal descriptions of my actual condition – because they are unnecessary as I am writing for myself.

So right now, I have deteriorated to a similar state I was in in January. I struggle to breathe if I talk too fast, stand too long or walk even a couple of metres. Stairs pose a massive challenge for me. I am as weak as a kitten and have dropped to 45 kg. The other night I realised that I cannot lift a pile of three plates with one hand – cannot. I struggled for ages and simply could not lift them.

With my breathlessness comes, of course, the exhaustion. On my best days I wake up feeling as though I have slept for five hours after doing a massive hike the day before. On other days I can’t wake up. Of course, I can’t spend my whole life in bed, but often by the end of the day I am so fatigued I can barely string a sentence together. Because my oxygen saturation is so low concentration is a nightmare. Where I could work steadily for a straight four to six hours before, I now struggle to focus and stay awake for one. So that’s the breathing and energy description.

The chest pain is another aspect. The last three days it has been pretty much constant. On Thursday I couldn’t get out of bed for hours. The pain manifests in a number of ways:

 Short severe stabbing chest pains that make me hold my breath and double over.

 Prolonged severe sharp pains which stop me from breathing properly. These pains usually fade slowly but are immediately worsened if I breathe in and out deeply. I take shallow breaths until I am so desperate that I have to breathe in deeply and then it usually makes me gasp or cry.

 Pains that last for hours or days. These pains are also affected by breathing and thus usually confine me to bed, lest I move and get more out of breath. These pains normally trigger corresponding pains in my back, neck and shoulders.

 Back “rubbing” pain occurs usually on my left side by my spine. It happens when the lung engorged with blood rubs against my back muscles. The “rub” sensation can actually be heard and felt – it feels as though a rough, textured surface is being moved back and forth in my back as I breathe; and it sounds like a crackling noise.

 Streaking pains are like “stabbing” pains, different chiefly in location. They “streak” across my chest suddenly.

 Corresponding pains – my back, shoulders and sometimes neck often develop pains in perfect unison with my chest. For example, my lower lung on the left often triggers pain in a specific point on my left shoulder. Massage helps my shoulders, but not my chest.

Now onto the medication. Warfarin, of course, causes bleeding and bruising. It also dries out your hair and skin and for some reason I am always cold. I am also now on Revatio/Sildenafil which causes nausea, dizziness, headaches and hot flushing. But I have become resistant, after two horrible weeks, to the initial Revatio side-effects now.

Jenna’s journal

Tuesday, 15th May 2012

I had a lovely weekend at Julia last weekend, though with bad chest pains. This past weekend was better, though. The pains have improved, and I’m not sure if I’m imagining it, but my breathing seems better too.

Nothing has happened yet with Daffy … but we have been chatting a lot. He’s so sweet. I really enjoy being around him.

Exams start next Thursday! Stress!

Jenna’s journal

Friday, 18th May 2012

School – English office 11:30 am

I am insanely tired. I still have to get through Afrikaans, biology, history, debating and then we are going to Stardust tonight. An afternoon sleep is without doubt going to be necessary.

It is six days to exams. I have no idea how I’m going to do this. I’m not concentrating well at all.

Jenna’s journal

Saturday, 19th May 2012

Home 9:05 am

Last night we went to Stardust. It was such fun! There was definitely a vibe between Daffy and me but nothing major happened. It was great, though. Kristi definitely needs to work there! I only got a little bit bleak when I had to sit, not dance. But oh well, we still had a great night. I definitely want to go more often.

Jenna’s journal

Sunday, 20th May 2012

1:30 pm home

I just read up about lung transplants, because if I have idiopathic pulmonary hypertension or pulmonary veno-occlusive disease …

Survival rates look like this:

One year – 75%

Five years – 50%

Oh. My. God.

On Monday, the 21st of May, I was sitting in my office poring over medical journals when my cellphone rang. It was Jen, phoning from school. Immediately I was on high alert.

“Jen?” I asked. “Is everything all right?”

Silence.

“Jen?”

Silence.

“Jen?!”

“Mom?” I heard a crumpled, crushed little voice crying breathlessly into the phone. My heart was pounding. She was panting and crying but eventually managed to say three little words: “Mom … I Googled.”

Horror flooded my body. She knew. I took 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 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.