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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.


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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?


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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.


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Millennial post-stroke

Millennial post-stroke

A few weeks ago I joined some groups that included “young stroke survivors” and although I absolutely love them, I wanted to talk about some of the challenges stroke survivors that people between the early 80s to the early 00s could relate to, so we’re not kids, but we also probably haven’t had some major life experiences as our more mature young stroke survivors (giving birth etc) AND we love technology LOL oh and we are super energetic (well, we try to be lol) Ok this is being super stereotypical but seriously wanted to talk about others like me even though all of us certainly have different experiences and different bodies with different types of stroke. This is written for 25 to 30 something-year-olds but if you’re a bit older and can relate I would love it if these tips helped you too 🙂  Here’s some things I’ve learned from my own experience.

Sleep

If you’re like me you find sleep hard to get at night even though you get fatigued easily during the day and feel tired…weird huh? I love this Calm app that I found Android and it super helps. I listen to “meditative sleep stories” and usually never remember the ending the next day because I actually fall asleep before it finishes the night before.

Exercise

Again, something I use on my android phone (you can even go a step further and get a fit bit something like that lol) I use google fit, it automatically counts my steps throughout the day and I add my exercises. I currently do 4km in 12 minutes on the cross trainer (starting the intensity at level 1 for the first 3 minutes, then level 2 at 3 to 6 minutes, level 3 at 6-9minutes and finally, at level 4 9 to 12minutes); 10 minutes on the treadmill (about 800m) and 5-6 minutes on the rowing machine (or equivalent to at least 500m). I set the goal of at least 30 minutes of exercise every day if I can. Then I add a few minutes every day doing some balance exercises on a balance mat. I guess the theme for me surround complacency – do not get complacent!

Diet

Before the stroke I had relatively healthy habits, even bordering on vegan, but since the stroke and being put on warfarin I cannot any green, leafy vegetable or anything high in vitamin K. As usual diet restrictions note, everything in moderation but definitely NO soft drinks, alcohol or overly processed foods (bye maccas/McDonalds lol).

Mental workout

Every day I do a day of challenges set by the android app Elevate and read a lot, here are some great, inspiring books (I haven’t read all of them…yet).

Pregnancy

Like many young women at our age, also known as birthing age, pregnancy is a big question on my mind and while I don’t have all the answers and probably no one does know everything, joining a group really helps to alleviate fears and ask questions. Try joining groups like I did for example: Folks with strokes (Mothers).

Work

Getting back to work is certainly a challenge, not just mentally but physically too. Having a supportive team, boss and partner definitely helps the transition. I have been back now for about month. I have noticed that although I am much slower, I can do it. The physios and psychologists recommended me to go back but with limited expectations. Where I could write 4 blogs a morning for other companies, I can now only write one in the morning as I find it hard to focus after and I get fatigued/tired easier. So I only work half days at the moment. They also suggested that every hour I take a few minutes to rest and do something else, like walk around, do some squats, stretches and re-focus my eyes (being a copywriter my eyes are always on a screen). I don’t drive in Australia (I do have an international license but they drive on the other side of the road here – scaryyy) so I don’t have many tips around this but I have been told after a stroke you are not to drive for several weeks after.

Getting Around

Just like with my autoimmune condition, I always think of the “Spoon theory” you have limited spoons now, no more unlimited spoons like before so pick and choose your battles or outings lol. Heading out tonight? It might mean skipping that afternoon run. If you’re planning to go to a party tomorrow night, make sure you rest up before then to conserve energy. Another little tip is using your phone reminders – I always seem to forget to take medicine on time, so make sure you have a regular alarm to remind you. When getting around, remember safety first and go slowly! If you are on warfarin too, avoid accidents like cutting yourself or falling down. The first few weeks getting out of rehab, my hubby helped me to walk everywhere (ultimate spotter lol) but when I am by myself, I am extra careful and cautious of where I am. No rushing! that train or bus can wait or you can catch the next one, do not risk falling over! Not only do you now bleed easier but you also have uncoordinated movements that unexpected falls could make you severely dizzy or worse, cause another stroke! Heaven forbid!

Music

I absolutely love music and it certainly helps in the path towards recovery. Check out my Spotify playlist and you can add your own tunes too 🙂  https://open.spotify.com/user/22eobkhq7cn5rtnonokancegi/playlist/0ot0xQNA24287NwXOMim3y

Challenges

Each month I set a goal to work towards. Next month I am joining a 5km fun “run” (or walk in my case) and I am excited to get going!

Diary

Instead of comparing to what you looked/acted like before the stroke, compare yourself just after the stroke. I could hardly walk or talk, so when I look at it this way, I’ve come a long way! Sure, if I compare to before there is a big difference, I am a lot slower and unsteady now but I am slowly improving every day even if it is the subtlest of changes. Also keeping a diary is super therapeutic, you need to face your feelings not hide from them. Observe them! If you’re angry, why? Go through the motions and express them in your diary, this can be a good log for looking back and also you can see if your handwriting improved too (mine was terrible just after the stroke). Remember “the more you do, the more you are” So don’t let yourself forget how to write, you need to write! It might look super messy in the beginning but after constant practice, it gets better. Even if you didn’t have a stroke, if you didn’t write for a long time, you would find it hard to write neatly again.

Finding your voice

Just after my stroke I lost my voice, literally, at first it was really hard to make sounds, then the words were mixed up, and then I just ended up really husky and breathy like I just had a cough or something. Before the stroke, I loved to sing so you can imagine losing my voice was definitely a challenge! With a series of vocal exercises (such as a bottle filled with a little water and straw) I have slowly built my voice back and this coming Monday I will see an ENT to do a vocal clinic test to see how the stroke impacted on my vocal chords. I have done previously, but it was not to the extent of my ability to sing. Currently, I can sing to a tune, which is a huge deal! But I can’t hit higher notes or access my mid-range which I see as a part of my voice is paralysed, or frozen, it feels tighter than usual. I have come across a couple of sites in the meantime: Dysarthria and Singing.

Why not me?

In a video I posted on my page, I told the story of one night at like 3am I looked in the mirror and I was angry. I kept asking “why me?” but the question I then changed it to was “why not me?” It is a powerful thing to look in the mirror and ask why not, instead of placing blame on someone else or something else, it’s on me, which leads me to the “real” why question, the “why” that I could control. “Why did you survive?” and it’s up to us to answer that, we are survivors for a reason, hold onto that and keep going!

Emotional Rollercoaster

It may seem that I am not that bad, well let me just start by saying thank you, I work hard at appearing “normal”. Sure I have my days, ups and downs, challenges just like any other stroke survivor, what keeps me going is the love of my family – especially my hubby. I know it can be super hard dealing with emotions but make sure to show appreciation to your loved ones! If you ever need a friend to vent to or share your accomplishments, I totally have your back too! 🙂

I hope you find these tips helpful, what about you? Any tips to share for your stroke recovery?

 

 

 

 


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Stroke Recovery Playlist

– “What are you afraid of?” by Kerrie Roberts
– “Fight song” by Rachel Platten
– “Fighter” by Christina Aguilera
– “Alive” by Sia
– “Never give up” by Sia
– “I am” by Mickey Shiloh
– “Stronger” by Kelly Clarkson
– “There’s nothing holding me back” by Shawn Mendes
– “Lose Yourself” by Eminem
– “Confident” by Demi Lovato
– “Monsters” by Katie Sky
– “Who you are” by Jessie J
– “Champion” by Chris Brown
– “Invincible” by Kelly Clarkson
– “Try” by Mandy Harvey
– “The Greatest” by Sia
– “Reaper” by Sia
– “Survivor” by Destiny’s Child
– “Roar” by Katy Perry
– “The Climb” by Miley Cyrus
– “I believe I can fly” by R. Kelly
– “Hero” by Mariah Carey
– “Give it a go” by Timbaland
– ” Am I wrong” by Nico & Vinz
– “I’m still standing” by Elton John
– “Good day”by DNCE
– “Rise Up” by Andra Day
– “Not alone” by McFly
– “Footprints in the sand” by Leona Lewis
What inspiring songs can you add? 🙂