Sarah Phelps: Through a Child’s Eyes

Meet my Peeps Guest Series: I met Sarah some time last year.  When I first met her, I had no idea what a great writer she was.  She was often present in online conversations and I remember wondering how she managed the caregiving role for her unwell husband at the same time as dealing with her own illness. Aside from her illnesses, Sarah is a  talented musician and bright spark.  I didn’t know she was a writer until she responded to my Letter to Dysautonomia post. We began corresponding and she got hooked by the writing bug!  This is the first of Sarah’s guest posts.
How do you see yourself?  Sarah is looking at herself through the eyes of others…

 

Picture of Sarah Phelps with a quote "When people look at me they see a helathy twenty-five hyear old girl riding around on the footpath on a mobility scooter meant for old ppeople.  They don't know the truth.

I broke my ankle in early 2009. I wish I could say it was from something exciting, like a jet skiing accident. But I was just walking around my room, tidying up. I sat on my bed to grab something from the other side; it only took a few seconds. When I stood up, one of my legs was completely numb. I didn’t realise until I had taken a step, placing all my weight on it, and there was a sickening snap, my ankle twisting at an unnatural angle as my leg crumpled.

Because of my EDS* getting around on crutches was very difficult. Trying to move my bodyweight around using just my arms = dislocated shoulders. My broken ankle and torn ligaments also meant I couldn’t drive, so I was stuck at home. A sympathetic couple from my Church stepped in and gave me a second hand mobility scooter. It had belonged to their elderly mother, but she’d just moved into a nursing home, and so no longer needed it. It was all mine. It was a bit embarrassing, but kind of cool to ride him around.

He was red, my favourite colour. I named him Wally.

It was pretty easy for people to see why I was riding Wally. I had a big cast on one leg, and a pair of crutches tucked under one arm. I got lots of grins and thumbs up. “What a clever idea,” people would say. “That’s heaps better than trying to get around on crutches!”

Eventually, my ankle healed. I could drive again. Wally got tucked away in the shed. Everything was back to normal. But slowly, my health continued to deteriorate. Eventually, I had to surrender my license. I wasn’t well enough to drive anymore. We sold my car. And I was stuck at home again.

After a while, Wally came out of the shed. I started using him to drive around the block, taking the dog out for a run to stretch her legs. Later I began driving him to my parents’ place, to visit them. Eventually, I progressed to taking him grocery shopping. I’d park him outside the store (he’s not an indoor model – he’s quite wide), do my shopping, then load him up with groceries and ride home. I got quite good at packing: I could fit a whole trolley-load of groceries on there! I was so proud that I could do the shopping by myself, instead of having to drag my husband down to chauffeur.

But I noticed something different. I didn’t have a big cast on my leg anymore, or a pair of crutches tucked under my arm. People no longer smiled at me. They frowned. Even if I made eye contact with them, gave them a friendly smile and cheerily said “good morning”, they didn’t smile back. They muttered under their breath. They made rude remarks about my weight. They pointed and laughed, and mocked me.

And I felt ashamed. I was no less disabled than when I had a broken ankle. In fact, I was more disabled, as it wasn’t just my ankle that was broken; it was my whole body. But my disability was invisible, is still invisible now. When people look at me, they see a healthy 25-year-old girl riding around on the footpath on a mobility scooter meant for old people. They don’t know the truth.

At first, it would really hurt when people made fun of me, or made rude remarks while I was down the street. But my two younger sisters changed my attitude. They were 9 & 11 years old. They loved to sit on the floor of the scooter and ride around with me, their legs resting on the plastic wheel arches. My youngest sister actually thought that this was what the wheel arches were designed for, so that Grandmothers could drive around with their grandchildren, and the kids would have somewhere to put their legs! Their enthusiasm for my cool scooter helped me to be less self conscious, even when they weren’t with me. When people stared and pointed and made rude remarks, I’d imagine my sisters were with me, with big beaming smiles on their faces as I drove them around.

My sisters grew into young adults – they wouldn’t fit at my feet on the mobility scooter anymore (even if they’d wanted to continue being transported in that way, which I highly doubt!). But when he started kindergarten, my nephew started riding with me instead. Every Monday during the school term I’d pick him up from the bus stop in the afternoon and take him back to my place, on my scooter, for piano lessons. He thought it was the coolest thing. He would sit high and proud on my lap, with his bag at his feet, and do a royal wave to everyone as we went past, like he was some kind of king riding away in his chariot. Awed voices of other school children would follow us as we rode away: “Whoa! Look at him! That’s so cool! How come he gets to ride on that thing? That’s awesome! I wish I got to ride on one of those!” It made me smile, every single time.

Since his brother also started school, the schedule has changed, and it’s been a long time since my nephew has ridden with me (his Mum now drops him off at my place and picks him up again afterwards). Without the frequent reminders of childish excitement about my scooter, I find myself having to work harder not to wither under the stares and snorts of derision as I ride past.

Recently, I passed by the local football field on my way to the store. It was early evening, and there were several football teams that had just finished training, and were also headed back downtown. That meant I had to pass a line of about forty fit, healthy, testosterone-fuelled guys. They were all young adults, about the same age as me. The snickering started down the end of the line and progressed to pointing, hooting and yelling. I wanted to ride my scooter into a hole and disappear. But although my knuckles may have been white from clutching the handlebars so tightly, I sat up straighter, gave them a cheery wave, and then proceeded to tune them out.

Eventually I got past them all, and was left alone to ride through a lovely part of the park. Trees, grass, flowers, birds. I took deep breaths and tried to ignore what had just happened. What I knew would keep happening as long as my disability was invisible. I rode down to the footbridge to cross the river, and found two boys sitting on the edge, fishing. They looked about 10 years old. They looked up as I came onto the bridge, and one of them called out to me.
“Hey miss!”
Inwardly, I cringed. “Yeah?”
“Is that your ride?”
“Yeah, it’s mine”.
“It’s pretty cool!”

For a second, I looked down at my scooter again with my adult eyes. The stuffing is coming out of the seat, and one of the handlebars is chewed up. The scooter is dusty, and rattles and whines noisily when I use it. And worst of all, it’s meant for old people – and I’m not old. But then I looked back up at him. His eyes were wide and sparkling as he beamed at me with an enormous smile. And I couldn’t help but smile back.

“Yeah, it’s okay. Thanks.”

He went back to his fishing, and I kept going, contemplating my scooter through a child’s eyes again, and smiling.

xx Sarah Phelps

How do you deal with it when people treat you differently because they can’t see your invisible illness? Personally, I wish I could just always shrug it off, but I have to confess that it does wear me down over time.

* In addition to Postural Orthostatic Tachycardia Syndrome (POTS), I also have Ehlers-Danlos Syndrome (EDS). One of the most frustrating symptoms of my EDS is hypermobile ligaments. Ligaments are the things that are supposed to hold your joints in place. But mine are super stretchy, and let my joints just kind of go wherever they want. That means frequent dislocations and subluxations (semi- dislocations).

Gone Girl. A Tale of Road Rage.

On a scooter.

Yesterday was my birthday…
I turned 28.  In hexadecimal “nibbles”.
(google it, hexadecimals are kinda cute).

Screen Shot 2014-09-26 at 8.29.40 am
But back to the story…
…my friend Flo came and picked me up and took me to the mall.  The scooter hire girl remembered me and I got the highly coveted Scooter Number One. It is zippier, better at stopping when you ask it to, and the side mirrors don’t flop down all over your handbag.  Score! I tootled around a few shops high on the joy of a birthday and time with Flo.  I tried not to be distressed that I couldn’t even get down the lingerie aisles in Farmers Department Store. I figured I didn’t really need a birthday bra. I smiled anyway at the shop girl near the fitting rooms in Esprit when she said it might be easier to shop online. It might.  But it isn’t as much fun as shopping with Flo. And why shouldn’t I enjoy a bit of retail therapy?  Then I dropped Flo off for her appointment at the makeup counter.  I should be, er… more into makeup… but the bookshop was just down one floor and it is an unfair competition! Hmmm… makeup, books, makeup, books. It’s really no competition between makeup and books.  A hole was burning in my pocket.  For my birthday I’d been given a cool hundy, and I was thinking about the delicious potential to drop it exclusively on BOOKS!  Squeee!

I scootered down there faster than you can say ‘tortoise’.   A few aeons later, I arrived.  Mobility scooters have a speed switch that ranges from slow (a tortoise icon) to fast (you guessed it, a hare)… but even at hare-speed, it takes a looong time to get anywhere.  In the front of the bookstore of choice, Whitcoulls, they have some displays of new releases.  My twitchy fingers were eager to pick up the first one I could see. I liked the title, ‘Gone Girl’.  But the angled display tables made it impossible for me to pull up alongside on my scooter. I did a sleek little (sixteen point!)  turn and tried to reverse in. I banged the corner of the table.  A Whitcoull’s employee looked across at me, arched her eyebrow and walked off in the opposite direction. I reached for the book. It was 5cm out of my grasp. There was no room to ease myself off the scooter and stand to give myself more reach. Had I had room, I’d have been able to do that. But it occurred to me in that moment, that many people in wheel chairs can’t stand to get to things out of reach; what would they do in this situation?  I looked around for the employee, hoping for some help.  She was gone, girl.

I was not going to be deterred.  A hundred to spend on books is one of the greatest gifts of all time. I wasn’t going to let a bookshop girl with her archy eyebrows get the better of me.  I gave my embarrassment a silent talking-to and manoeuvred out of the space.  At the back of the store, the wall is lined with authors from A-Z.  I wouldn’t have a spotlight on the newest, but I might find some gems. I set my course for the rear. Half way on the dial between tortoise speed and hare speed.  I was veritably hurtling, turtle-style. The aisles in Whitcoulls do fit a scooter if it is going straight down the middle. Sadly, turning is not optional.  People on mobility devices clearly shouldn’t want to browse in bookstores. There are artfully arranged stacks of merchandise on the floor at the corners of all of the aisles.  The Little Yellow Digger-gift-boxed-set display met Scooter Number One as I attempted to round the corner. Scooter, 1, Diggers, 0.  A mother in the same aisle helped me by picking them up (thank you anonymous mother).

I spent half an hour in Whitcoulls. I looked for help no less than fifteen times.  Help to reach down titles I couldn’t reach, help with the infernal aisle corner displays. Help finding the poetry section.  I saw three more staff members. All three saw me and changed direction. No one offered to help. The crickets chirped.  When your eyes are not at the height of standing people, it is quite hard to get eye contact.  When you are down that low, even a wave can be lost behind a bookshelf. My hundred dollars hid deeper into my pocket. No party for it, today.

I lost my desire to purchase books from that store. I threw the scooter into reverse.  It has a really high pitched reversing beep.  It’s an incredibly annoying sound. I left it in reverse long enough for archy eyebrows girl to give me one last look. I accelerated past one last corner display.  I may have *cough* inadvertently disturbed its symmetry. I left the store.  In my imagination I looked a bit like a speedy hare, leaving a cloud of dust in my wake.  In truth, it was a less dramatic exit.  Think, slo-mo.  But the expression on my face remained steely resolute.  I patted my pocket. That’s a hundred bucks you don’t get today, Whitcoulls.  And then, I was a gone girl, too.

So my post about my birthday books is postponed.  …maybe there is a bookstore out there who wants my custom, even if I am not walking on two feet.

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PS:
I sent the people at Whitcoulls a link to my post as soon as it went up.  Very quickly Diane got back to me.  I am very grateful for such a timely response and so glad that the store will look into ways to improve customer service for people on mobility devices.  Thank you, Whitcoulls.
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This is what she wrote:
Screen Shot 2014-09-26 at 4.54.42 pmThanks for touching base and sharing your in store experience with us. It is disappointing that we have not been able to deliver the customer experience you, and every customer, deserves. There is nothing better than browsing books especially in the excitement of birthday present shopping. I will be passing this information onto our Store Manager to ensure they can look into this situation and how they can use this to improve their customer service.

In the meantime, I would love to extend a birthday present to you from Whitcoulls. If you are still interested in the Gone Girl Book, I would love to send you a copy along with a $20 Whitcoulls Gift Card that may enhance your birthday spending money. If you can send us your courier address and we will arrange to get this out to you.

Kindest regards,

Diane