What I learnt from moving to an island and eating ice cream

Seventeen. They say young and free and I was weighted by death. I faced mortality head on as they said I had two years to live. In an instant, I went from a girl with her whole life ahead of her to making bucket lists and growing up. But I didn’t want a trip to Disneyland or to swim with sharks. All I really wanted was to get to live but I didn’t know how.

There is no guide book for how to deal with being sick. No road map to chronic illness. After year after year of strolls down long sterile hallways and waiting rooms I dropped everything. I walked away from treatment in order to find out why I wanted it in the first place. Pokes and prods were so marginalized in my life that the purpose was gone. How do you straddle the line between staying alive and living?

I used to think you could run away from being sick—you can’t. But you can run to a place that shows you why it’s important to be alive.

Bare feet and skeletons are native to me. Summers spent in isolation with squeaky clean surfaces not of that of beaches and sun on my face. I moved to an island. No fluorescent lights. No hand sanitizer or visiting hours. I moved out of the hospital. I worked in a small ice cream store on a quaint island. I helped hundreds of kids a day who couldn’t reach the counter to count their shiny pennies. For a girl who never had a childhood, giving one to others felt like the missing piece to a puzzle I never knew I needed.  I gave joy in the form of double scoops.

island-photo-1

And maybe life is like an ice cream cone, or mine at least. You can eat ice cream in Antarctica and it won’t melt one bit, or you can have an ice cream on a summers day, it will drip down the side of your hand and you will be stained by the colour that is left by it. But ice cream in the sunshine has purpose and it doesn’t in Antarctica. It leaves a trail to be remembered even if it doesn’t last as long, it’s appreciated in the moment.

I want to be an ice cream on a summers day. I want to live a life outside of the grey walls of a hospital wing because that doesn’t feel like living at all but simply being alive.

I went into this summer thinking I would end it with a big revelation that would allow me to walk back into a hospital, to hook up an IV and start my next dose of whatever the next shot in the dark is. I’m not there and that’s okay. It takes bravery and candor to walk away even if your stumbling. I know now that people will hold my hand and hold me up when they have to. Being sick is less of a burden then one is originally led to believe.

If you can, get away. Go to the mountains. To an island. Anywhere. Learn why you want to live and not just because you are scared of the alternative. Have an ice cream or two along the way.

 

 

What I Learnt Over A Game of Operation

Ages 6 and up and 15 minutes to play. On a muggy morning at a summer camp laid a board game; Operation. If im being honest I never enjoyed the game as a kid, but Jess’s enthusiasm for it swayed me and we took a seat at a cleared table and opened the box.

We didn’t know each other.

As we placed cell phones in stomachs and frogs in throats the game began. The competitiveness took over and soon we weren’t stopping anytime soon.

Until this point I would have not wanted to play a game that reminded me of the woes of my health. I was having trouble walking into doctor’s offices because hearing that you have a significantly shortened life span was not what a newly 19-year-old wants to hear.

The bell in the head and the bird in the ear.

Through laughing and frustration, I learnt that operation is just like my medical journey. That sometimes there is an urgency to fix things in time, sometimes there is not, and sometimes there is nothing you can do. Sometimes the buzzer will sound when you are in trouble and sometimes it doesn’t even when you need help.

Sometimes you need to let people into that struggle and sometimes you need to power through on your own. Sometimes all someone can do is being present through the struggles and the triumphs. Looking past our highly competitive spirit we both wanted each other to succeed. The oppositions improvement only helped better ourselves. There was a comradery present in that moment.

It was a simple game on a simple day but the lasting effects of a twenty-dollar board game is one that will stay with me. I remembered what it means to fight. I remembered why it is important to. Most importantly, I learnt that I am never alone at the operating table.

Being Disabled Isn’t Sad

Walking that Sunday afternoon clutching the arm of a friend as my legs felt especially wobbly and the brain fog was in full force we were approached by an elderly woman. She asked me how I got injured and as we answered in unison “no its permanent” she responded with a sorrowful realisation. As we parted with the woman my friend mentioned how she can see why that would be frustrating.

That was the third time I was approached that day.

A few days prior I was at a shoe store picking out a new pair of converse. I had just picked up my new hinged AFO which meant new shoes and I was excited. As I was trying on my shoes an employee asked what happened. As I explained that I have a drop foot I was bombarded with a thousand questions and “I’m so sorry, sweetie.”

I just wanted a size 6.

Before I became disabled I didn’t see that being disabled or sick is not the worst thing that can happen to a person, especially a young and vibrant teenager.

As a society, we put a lot of our worth into our bodies, whether that is trying the latest diet or makeup trend or as deeply engrained as how our legs function. While I fully see that I am not any less of a person because of my long list of diagnosis’ that does not mean that others do too.

What I think is often missed is that my inability to run or jump in no way means that my life is lacking. It doesn’t rob my joy because my joy does not come from my physical being. I am filled with the joy of The Lord and that is sufficient for me.

I am an athlete, a sister, a friend, and those should mean so much more then the limitations on my body.

But to most they don’t.

I don’t blame you for thinking this way. Most of us never get the chance to see the world through a new light.

Please don’t interrupt my day to stare or express your Pity.

I challenge you to change the way you view differences. As simply that, something unlike you but not tragic or heartbreaking. I am not a tragedy and you shouldn’t feel sorry for me; I certainly don’t.

My life is far more beautiful  then I could have ever imagined.

 

 

 

 

 

 

 

 

 

I Am Ariel

Today was the first day of spring break.

People are venturing to far off lands. I’m trying to venture out of bed. I have spent the last of my days in my princess bed feeling like there are a thousand peas.

It’s okay. You will be okay.

My mums words are a constant echo that this all comes with the territory.

I get bad days, weeks, just like the rest of us and that is okay.

The worst part of it all is how the world doesn’t stop turning when you can’t keep up.

You miss out on the big important parts of peoples lives. You miss out on the little things that are so often taken for granted.  They forget that all you want is to be apart of their world.

I am Ariel.

I want to be where the people are.

I long to know about their days. I yearn to know more then these four walls.

but we are conditioned to move as fast as possible; to keep a pace of a hare and not a tortoise. How can I expect people to take a seat next me? To let me in and not left chasing behind.

The endless solitude outweighs the physical burden.

I am Ariel, patiently  waiting to get back on my feet.

 

 

 

 

 

 

 

This Is Not A Public Service Announcment

Chronic illness is sleeping with a pharmacy worth of pills that you can pop if things go downhill.

Chronic illness is being stuck in bed for days on end.

Chronic illness is having your family rework their lives to make sure you are okay, constantly serving your needs.

Chronic illness is your mum driving all over town getting you food you think you can stomach.

Chronic illness is exhausting for everyone involved.

Chronic illness is isolating yourself so that others don’t worry.

Chronic illness is feeling isolated by your inactivity.

Chronic illness is watching the world pass by, feeling trapped by your own body.

Chronic illness isn’t glamourous. It isn’t a PSA. Chronic illness is gut wrenching  and hidden from the world.

Chronic illness is only making it a few steps past your bedroom door before collapsing from pain and frailty — trying to make it back to bed like a baby sea turtle rushes to the sea.

Tears streaming.

Chronic illness is knowing there is nothing anyone can do.

So you sit, you wait, and you contemplate everything.

Above all, it’s knowing that something good will come from this — The joy that is coming cannot compare to the pain in this moment.

 

 

Choosing To Sit Down

Since I got sick, getting me to function normally has been a priority. I have spent years trying to gain independence. I  have learnt to walk more then once and while my legs aren’t my best attribute they are ones I am very proud of. I am proud that each and everyday I stand up and put my best foot forward.

I’m 18 and I wish this wasn’t a choice I had to make.

I wish this didn’t feel like a failure. I now see that putting the amount of worth I did in my ability to walk, even one that is  based out of pride, is damaging to someone with lowering physical abilities. It feels as though everything I have always strived for I am loosing. So much of who I am was comprised of  the girl who learnt to walk so many times and despite everything stood back up.

I’m choosing to sit down.

I’m choosing to see that being able to do more with my life, a higher quality of life, outweighs the expectations I put on myself. I choose to get an AFO years ago for the same reason. I choose a handicap placard.

I know that if I want the chance to be independent, which I do, I need assistance. I know that going to University has been something people have believed is out of my capabilities but I got into every school I applied for. I am smart and capable. My body isn’t quite as capable. My body is atrophying, chronically fatigued, and unbalanced. Life has been doable with people to support me but getting around a campus on my own isn’t going to work unless I lessen the burden on my body.

I am really struggling with the stigma. I don’t want to be a girl in a wheelchair. I don’t want to be separated, and potentially isolated. I don’t see myself sitting, in my mind I am running free in fields of wildflowers. I guess my expectations for myself have never lowered and I haven’t yet decided if that is a good thing.

I know that so many people are disappointed that this is a choice I am making. I know those in my prior medical team would not be okay with this. This isn’t he first choice ive made that would make them feel that way.

I hate that I am seeing this as a negative,  but I don’t feel good about this. I don’t understand God’s plan right now and I’m trying to be okay with this confusion; That not understanding His plan is not the same as not knowing that there is a plan.

So I will start the process of getting fitted and working with Occupational Therapy.

Sometimes chronic illness isn’t a series of rosses sometimes its tearstained pillows and disappointment.

 

 

Cake Mix and Balloons

Today was World Rare Disease Day. The day dedicated to increasing awareness, and subsequently funding, for the varying rare diseases out there.

Talking about it with my friend I had mentioned baking a cake and getting a balloon to celebrate. A party of one.  There is a lot to be proud of.

She talked about how she was baking with a mutual friend of ours and that they would bring the party to me. Not reading much into it, I went on with my day until I got a text message from each of them.

Can we come to your house to bake a cake?

Yes.

When I was younger my parents worked tirelessly to make sure all of my needs were met. Isolation was something we needed to combat. My parents started hosting dinner parties for my friends and I, Interactive Food Night. This concept worked because we had control over the environment I was placed into and it was an activity we could all do, eat. On those nights we would try out hand at making something new; Fondue, ravioli, sushi we did it all.

when the girls showed up with eggs and cake mix in hand they had two balloons.

She had taken time out of her day to get me balloons. She had remembered me saying I wanted balloons but probably wouldn’t feel well enough to go and get them.

The day became so little about these diseases I fight each and every day and all about livng. Living life surrounded by good people. Now, our cake may not have been a masterpiece by any means but i think today painted a beautiful picture.

As chronic illness sufferers, relationships can be tough. It had to find people who are understanding to the fact that you have a different set of needs that often change in an instant. Find those who will show up at your door without hesitation because i promise they are out there. I promise they are more than worth the wait.

Today was a rose.