rss search


next page next page close

Outside: Short Story III – Staying up to watch the sunrise

Outside: Short Story III – Staying up to watch the sunrise

Author’s Note: This is the third story written from a series of short stories called “Outside”. Which you can read more here. This story is fictional but I can relate to my character, when some in their 70s tries to compare the experience with mine, it’s not the same.

“When I was your age…”

My uncle drones about his endless energy. How he and his friends at the time would stay up all night to watch the sunrise.

Meanwhile, I lie in my bed almost forced to listen to his stories.

“You’re lucky you’re so young” he continues.

I know in some weirded out version of reality that he has of me, of the…life I’m living. His stories help.

But they don’t.

I may be young in age, but I’ve never gotten the “youth” he so rapturously talks about.

My first “stint” in a hospital happened when I was 8.

I had to skip grade 3 as I was in and out of hospital that year.

The next few years weren’t much better but at least I could go to school.

I’m 16 now, and this boundless  energy he talks about is something I can only imagine.

I go to bed at eight on the dot every evening. This isn’t just because I get tired easily at night, it’s because if I stay up later, I pay for it, my body make me pay for it – I loose control of my legs, migraines start, a late night pretty much equals a night full of vomitting.

* * * *

“Serena, will you with me to the seniors ball next week?” Matt, the most popular senior in my highschool, asks me.

Knowing what I just mentioned that a late night has it’s price, what do you think my answer would be?

I decide to go. What?! you ask, let me put this in perspective, I’m 16 and like any other 16 year-old fitting in is important to me. At least I can appear I’m a normal 16. Although the price on my body will have to be paid later that evening. It will be worth it. I think.

I go to ball, the night was wonderful. But like I said now I have to pay up. My legs just make it to the bed. I lie curled up in ball.If I don’t move the world will stop spinning, I convince myself. I glance at my bedside clock, it’s 3am. I haven’t gotten to sleep. I’ve just been lying here, still in fetal position waiting for this, whatever it is to pass. My limbs are throbbing.

Looking from the outside, I can imagine you think: Why would anyone knowingly do that to themselves?

Again, in a bid to appear normal; to fit in, this is my price.

“I’ve got arthritis now too, Serena” my uncle of 72 says.

At least my uncle got to have an average experience of being young, I have never stayed up to watch the sunrise, I’m afraid if I even tried, the price certainly wouldn’t be worth it.

Author’s Note: In Serena’s story, we see a glimpse of the impact a medical condition has on a teen. It is a very  difference experience of someone 3 or 4 times her age.


next page next page close

Untitled Book Project

Untitled Book Project

“Now, you’re going to have to dig deep, relive some of your most painful memories”, the psychiatrist says as she hands me a sheet of paper. I’ve been given some ‘homework’ throughout my compulsory psychology sessions. “You need to be brave, that doesn’t mean not be afraid, but rather doing something despite being afraid” she continues. Her hands sit lightly in her lap, everything about her pose denotes grace (fitting, given her name), a calm and unaffected position as reflected by her gentle eyes as she looks to me. “This is a safe space Camille,” she says. I swallow a lump I hadn’t noticed was caught in my throat. “Ok, I’ll do it”, I say. That was months ago, and now as I sit on my laptop to do my ‘homework’ that has now evolved into this book. I hope you can learn something along my journey. Whether it’s for yourself, or a loved one, know that you too are not alone…

Hi, my name’s Camille. I’m now 28 and last May I had a bilateral pontine stroke when I was 27. Yep, you read that right. People of all ages can get a stroke. It just happened to me at this age. But that’s not the only thing ‘interesting’ about my story you’ll soon find out. In a few months, my story is going to published. I was going to say ‘I hope’ but I think hope has little do with it, as long as I am breathing, it will get published.

When I was a little girl, I would’ve loved to have a book like this. Growing up with a chronic illness (a rare autoimmune disease to be a little specific), can make you feel very lonely, and misunderstood – and you have puberty to worry about on top of that. This is my memoir and I hope it will inspire you to live your best life now. There are a lot of stories and tips packed-in here and if you are a patient or a carer, some may say ‘learn from my lessons (I won’t say mistakes, as every decision I made helped me to learn something new).

Personally, I find the best stories are the ones that make you think; question who you are, change you for the better and encourage you to improve on the experience of others before you. So that’s my highly ambitious expectation of the book that I hope that you will hold in your hands and take into your heart…will you be a reader?


next page next page close

Outside; Short Story II – A world full of daisies

Outside; Short Story II – A world full of daisies

Author’s Note: This is the second story written from a series of short stories called “Outside”. Which you can read more here. This story is fictional but obviously a fear very real to me. I am not afraid of dying so much as the heartache and pain inflicted on others due to my own wishes. There are fates that feel worse than death – multiple miscarriages, the loss of a child, the risk of a stroke that is worse than the first and could render me vegetable-like – these are things that run through my head every day.

*             *             *             *             *

“Mama, mama!” she comes running to me. “Alexa! Slow down silly!” her sister follows her closely behind. “Today I am 4! Today I am 4!” There’s my little one. Alexa. I can see her clearly now. She’s part of my dreams every night and every waking moment.

“Mama?” Sadie’s staring at me. I’ve pretty much made a permanent move to our couch in the den.

“Sadie, are you okay?” I make a move to sit up, the pain in my chest from my dream makes it hard to get up sometimes. “Mama…” Sadie says. I haven’t noticed lately but she looks tired. When did she start looking so tired?

“You have to get up Mama, everyone is here” Sadie gets up from the chair beside me and I can she’s already started to arrange my clothes. She’s such a sweetheart.

“Sadie…” I stop her. “It’s okay, I can do it, is your dad outside?” I ask her, I can’t help but let the tears fall, it’s only ten and the day’s events haven’t even started.

“Of course he is Mama. He loved Alexa. He loves us too” Sadie says putting emphasis on the word us.

“She would have been 9 today you know…” I start but stop after seeing the pained expression on Sadie’s face. But it’s not all grief, there’s anger there too.

“Of course I know Mama” Sadie is in the corner now, her back is to me but I can tell her hands are shaking.

I get the strength back now. I don’t know where it comes from, but suddenly I can get up and move. Sadies hasn’t noticed I’m up yet until I’ve placed both my hands on her shoulders. I hug her from behind. There are no words to say.

 

*             *             *             *             *

Alexa was 2 when we first noticed something was different. As a person, she was full of life, exuberant, a child. There was nothing amiss there. It was her body. She bruised so easily. She would fall on the ground and laugh. The child laughed. She never cried over aches and pains. Then the fevers started. They would last for days. It wasn’t the common cold. She started to live in the hospital. We were checked-in more often than not. She never cried. All she ever wanted was to go outside. “Mama, mama, can we go see the daisies today?” She would always ask me. I couldn’t let her. The doctors had told me she had a rare disease involving her immune system. She couldn’t handle even the slightest bit of a cold, it would shut down her organs. I had to treat her like she was in a bubble. She was 3 when I had to stop holding her. Snuggling her. The lack of physical touch was a blow to her. We could tell. Being such a loving and playful child not being able to be touched or touch other hurt her more than anything. She never cried though.

 

*             *             *             *             *

 

“Are you ready?” I hear Garrett entering through the back door.

“We’re ready” I give a small smile to him as he walks into the lounge room. He doesn’t smile back. We haven’t smiled at each other for a long while now. Even before Alexa’s passing. He looks around our living room. It looks exactly the same as before but at the same time so different.

“Sadie…” Garrett notices Sadie is already here. I know what he sees because I see it too. She looks just like Alexa. Only a couple of years older. When they were younger they could almost pass as twins. Sadie has grown up so much though in these past few weeks. At only 9 she’s seen so much. She’s lost so much. While they weren’t twins, the girls could read each other’s minds. Alexa was always the more dominant of the two. Sadie adored her though and would always go along with her sister’s plans however outlandish they may have sounded. She knew she wouldn’t be long with us. Maybe that’s why she had to do it all. Everything. But she couldn’t. So she asked Sadie to do it for her.

*             *             *             *             *

The drive to Pleasant Meadows Home doesn’t take long. There’s silence. Not just where we are, but in the whole place. We’re the ones who are left but we’re the ones who are quiet. Alexa wouldn’t have been. She would’ve been telling us stories. Imagining the lives of all who rest here.

“Catrin, I need to talk to you” Garrett whispers from my back. I turn and see him for the first time since we got here. He looks good. The past few weeks have aged him, as I’m sure they’ve aged me, but he’s still as handsome as the first time we had met.

Why did it end? Could we have done something different?

We’re home now. Garrett walks into our room, a room neither of us have slept in since that day. He picks up and strokes a photo of Alexa we have on the mantel piece. “She’s so beautiful, Sadie looks just like her you know…” I can barely hold in my feelings. Garrett wants to talk but will I ever be ready?

*             *             *             *             *

The dreams they repeat. I could never do that before. Now, I’m happy for them. They give me a chance. A chance to see her again…

We drive past the fields on the way to the hospital. We’re alone in the car this time. Sadie had to go to soccer practice (Alexa had really wanted her to join) and Garrett’s doing some grocery shopping for this week. It may sound selfish of me but I love moments like this.

“It’s so beautiful Mama, isn’t it?” Alexa says. We have driven past these fields almost every day for the past 9 years. “We can stop there on the way back if you’d like honey”

It’s the first time she’s ever said this, first time I’ve ever replied like this. I can’t let her go out into the field but we could drive a little more into the field maybe. I look back to her in the car. She’s not sitting there.

 “I’d like that Mama, just think of it, a world full of daisies…”

I can hardly speak. This child. She was a blessing. She is a blessing.

“I love you Alexa”.

*             *             *             *             *

Author’s Note: In Catrin’s story, her grief and her inability to let go gives us a picture of who she is today – a shadow of her former self. But can you blame her? Love is a very powerful thing, and so is grief. It can be a process. She is at cross roads at the end of her story, I like to think she finds the strength within her to move on and love everything she does have, not what she no longer has.


next page next page close

Waking up to a nightmare

Waking up to a nightmare

Hi, my name is Camille and at 26 I had my first TIA stroke, yes that was just the beginning of my story. My most major and final (well that’s what I am telling myself) ishaemic stroke happened recently, I was 27. It’s a bit unusual, sure, but I’m a survivor. So many people told me this is my chance and they’re right – this is my chance to be everything I can be. In this story, almost fable-like, I hope you don’t have to go through my experience to learn my lessons. Love and light, Cami xo

 

Bali. The ultimate vacation destination. To say I was excited is an understatement. I was over the moon, ecstatic. I even packed a couple of weeks in advance which I hardly do these days. I arrived and it was beautiful, the place and the people. On the second day in Bali and I could tell something wasn’t quite right. I was exhausted. I put it down to being jetlagged, I needed to rest. So my second day was uneventful (seemingly) and I had a migraine (unsurprisingly) I’ve had one almost every night for 7 years. The second evening comes, it’s 2am and I’m beginning to panic, I have no strength in my left side, I’m worried because breathing is getting hard. I don’t want to tell my sister, she’s sleeping in the room next door with her hubby and two little girls. I’ll wait til 8am. 15minutes pass by and I am starting to truly panic. It’s hard to even take a sip of water. I’ve gone downhill fast and feel desperate. I call my sister “Gala!” (her name is actually Gisella), “Please take me hospital!” I say crying standing between my room and hers. I know I am frightening her and the kids, I’m starting to frighten myself. I leave a few voice messages on Facebook messenger to my hubby telling him about my  plans. He’s a cluey one, that guy. He’s booked a flight to Bali first thing in the morning, despite me telling him not to. Thank goodness he did. After heading to an international hospital, several hours later (and injections) I get CT-scan results. I tell them I’ve had a migraine before. Then they turn to me and say I haven’t got a migraine, I’ve had a stroke. If ever there was a wtf moment this was it. I was 27, on holiday in a foreign country, this couldn’t be happening right? So, that’s the beginning of my tale. I literally woke up to a nightmare, only this was very real and truly happening.  In the next blog posts, I’ll be tackling each “lesson” head on that I encountered on my journey. Thanks for tuning in 😉


next page next page close

Food Labels

These thoughts have plagued me over the past few weeks and I can’t help but try to make means of them.

Nope, I’m talking about labels on food, but the labels we put on ourselves.

Vegan? Vegetarian? Pescetarian? Fructose Free? Meat Eater? Ovo-lacto vegetarian? There’s labels for everything but not really a category for anyone who is one and none at the same time? Some could says that’s just being indecisive, you either you or you’re not right? But I feel the whole things with diets, with the feeling of “limits” or “cutting out” is just a way to fail keeping to your nutrition goals. So instead, I like to say that I am a CONSCIOUS EATER meaning I am conscious with what I put in my mouth. I’m pretty much 70% veggies and fruit anyway, but I do still eat the occasional meat and what not, but I do this making the conscious decision of how it will affect me and others, and thus don’t eat it often.

Healthwise, red meat has never really been “on my side” per se and probably doesn’t good to anyone else (human and non-human) I always experience more exaggerated symptoms following a big piece of steak, such as stiff joints and more nodules, hence you’d think I’d cut eating it altogether knowing this, but hey sometimes you forget, we’ve been conditioned to love a cheeseburger or a lamb roast and yet you know it’s not good for you. Surely not a few times would hurt? Actually it would, but we must accept as human beings, behaviours (conscious and unconscious) take time to re-program, re-educate. I could go the route of letting it all go, but it comes down to taste. Sometimes you would really like to a fully-fledged vegan but when you get into cooking vegan meals, it just doesn’t taste all that great. So it takes time to learn the recipes, the substitutions, until they no longer become the “substitutes” but rather the first ingredient you think of. So it’s a learn process. So while we undergo these changed, we need to settle with being conscious eaters, noticing how it makes you feel, really feel. Not just the instant gratification but hours later when you feel bloated or have rashes. Then we look even further outside of ourselves, how it affects the animals, the world. Watching cowspiracy you see the environmental impacts on a grand scale of what eating meat does.

It’s sad because all the signs are there, but yet still it’s hard to make the switch, we are so firmly rooted in what we have always known, sunday roasts with the family, fiesta time, all our major events in life focus on food. How can we reclaim these times, still have it centered around food but CONSCIOUSLY thinking of food that’s not just sustainable but TASTY.

As an Autoimmunee, this is my challenge, I’ve already started being more AWARE of sugar and fructose, which has greatly helped, there is certainly a lot more to learn and instead of being overwhelmed, I see it as a lifelong task we should all strive for. So are you ready? Be a conscious eater with me, axe the labels and get down to what it is you want to do with your health/what kind of human being you want to be in the greater scheme of things. LET’S SHARE AWESOME RECIPES THAT MAKE US FEEL GOOD BOTH INSIDE AND EVEN DEEPER INSIDE, RECIPES TO FEED OUR TUMMIES AND OUR SOULS.


next page next page close

Getting back up

I know the feeling of giving up. There’s a reason. There always is. Several weeks ago, I got Shingles under my right breast. Yep, it sucks. Not sure what it is? Google it if you want, it isn’t pretty. It got me off my exercise for a while. I know it’s a legit reason to stop exercising for the time, as Shingles can get pretty painful and I wouldn’t want to sweat on top of that too. But I used it as an excuse to throw out all notions of a healthy lifestyle, I used it as an excuse to eat crap. Is there ever a good reason to eat crap? Nope! It just made me feel more crap. But it’s easy to slip into old habits when you feel like crap – being health conscious takes effort right? Have you ever done this? What was your ‘excuse’? ProjectBE is all about making this a lifestyle, a new habit that we want to stick. How would you keep up a healthy lifestyle? If you haven’t been able to before, what do you think you could do differently?