Standing, still. Moving forward.

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The lights cast a soft whiteness across the photographic back drop. The studio is quietly humming. The equipment pops and flashes for each shot. Nods and short sentences between the photographer and stylist. I’m standing there, in my tenth outfit of the morning, swishing one way and another, a small dip of the head, a smile at some imaginary friends, a little on-the-spot walking action… it’s a sequence of movements like a slow motion dance. I am handed a bag, someone teases a rogue section of my hair.  Someone else adjusts my sleeve so the wrinkles will fall ‘just so’. I am modelling.

I smile at the lens, my mind racing along with the shoot, keeping up but in a parallel reality. I’m stunned by the surrealism of it all. I find it hard to compute that I am here, doing this. I’m not sure how long it will take me to adjust to feeling this way. Only 6 months ago I was struggling to manage daily life. Standing was my nemesis. Yet I have been on my feet for two hours straight… and I can still smile. Flash!  Pop! I feel my calves flex to keep my balance in my size-too-small prop shoes. I’m really doing this. Still standing.

“That’s it, we’ve got it!” smiles the photographer. The stylist and makeup artist give each other a high five. We. Are. Done.  Everyone thanks everyone. I change back into my own clothes. And just like that I clock off from another shoot as a curvy model. It’s such a fun and affirming thing to do. I feel like the luckiest girl in the world. I’m being paid to try on clothes and show people how they really look on a curvy body. I’m contributing to the kind of online shopping environment that works for curvy girls. I can’t count the number of times I have not purchased online, because the model looked too small for me to really understand how the clothes would fall. It makes me happy to think that there are DD-cup+, curvy girls out there who will purchase clothes this season because my boobs and bum provided some realism to help them with their shopping choices!  Here’s to the bootylicious bods out there, and some fair representation!
Here’s a grainy phone picture of me all glammed up, on my way home from yesterday’s shoot:

I’m really doing this. I'm still standing.(2)

But besides the representation of plus-sized bodies, the glamour and the fun of doing a shoot, there is always something running along underneath, for me. An incredulity. An awareness that just standing is still a dream for so many of you, just as it was for me, not so long ago. I remember how that felt, longing for a body that could do the normal stuff; every present moment is echoed with the contrast. I carry my past with me, I carry a knowledge that I can never forget.

And it is precisely because of all those years that I am seizing the day! I am doing what I can, because I CAN! But I have not forgotten you, out there. I stand for you as much as I stand for me. With every health win, every symptom I walk away from, with every medication I wean off, I am laughing in the face of Dysautonomia. Take that!  See this? Wham. In your face mother plucker! I so hope that if you have been following my journey, you feel me carrying you into everything that you cannot do. Into all of my upright hours, through all of my busy days. You are with me, in spirit if not in body. Your own body biding it’s time, battling it’s own way through the maze. Hanging in there.

I stand for you.

I stand for a world that is kinder to people like us.
I stand until you can.  I will stand as long as I can.
Hang in there my friends.  Hold tight. Never, ever let go of whatever it is pulling you onward.  Because if this can happen for me, then that means, it is possible.  If I have this reprieve, this time of plenty, this freedom to be who I always used to be, then why not you, too?

It’s a paradox, but nonetheless, here I am standing still and moving forward.
Kia Kaha.

*the necklace in the image above is from Uberkate. She ran a competition last year for women to nominate their friends/sisters/mothers using one word for the pendant.  My friend Nettie nominated me and chose the word ‘standing’. My sister in law Cathie seconded the nomination.  And they won it for me! It is a necklace I treasure.  I wear it every day and it draws me back to my purpose every single time I look at it. Thanks Nettie, thanks Cathie, and thanks Uberkate!
** Nettie has a blog called I Give You the Verbs. Which tickles me, because in winning that necklace for me, she literally gave me the verb! 😉

Kendall Carter: In the Pink

In the pink… an expression which describes the look of good health. But what if your health isn’t good? Can you still look gorgeous? My friend Kendall looks just like an exquisite porcelain lady doll. She is redefining what it means to be ‘in the pink’! She is one of the sickest people I know yet she blows my mind every time she posts a photo. So stunning! I am so delighted that she agreed to write a guest post for the ‘Meet my Peeps’ series, because I think her voice is so important.  But it hasn’t been easy, since I asked her if she’d like to do a piece, she’s been in and out of hospital at least four times.

Kendall, I so appreciate the efforts it took to write this piece for my blog.
Thank you so much! x

Kendall has a complex medical picture. She is diagnosed with progressive Autoimmune Pandysautonomia. It causes POTS, gastroparesis, subacute urinary retention, breathing issues, CIPO, swallowing difficulties, temp regulation issues, small fibre neuropathy, pupillary dysfunction, anhidrosis, IST, supine hypotension, orthostatic hypotension, syncope and the other usual autonomic dysfunctions typical of Dysautonomias. She also has Median Arcuate Ligament Syndrome (MALS), Hashimoto’s disease, demyelination disease, hypothyroidism, endometriosis, adenomyosis, chronic rhinosinusitis, chronic neutropenia, PCOS, pernicious anaemia and issues related to the malnutrition from gastroparesis.

And she is beautiful.  Read on, all about her journey into better self esteem and how she expresses her individuality through beauty, fashion and social media…

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Yes, let’s start this post bragging about what an inspiration I am and.. wait, what!? When did I suddenly become an inspiration? Beautiful? Confident? Calm? What’s all this about? Did someone start paying these people off?

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Let’s rewind. My name is Kendall. I have a chronic illness. It sucks. I spend a lot of time in hospital and an obscene amount of time in bed. But I also like to play dress up, usually just to go to a doctor, hospital appointment or even just if I’m staying at home, seeing no one apart from my significant other for a couple of hours when he gets home from work. At first I never questioned why, I suppose it was because my appearance was one of the only things I still had control over. I’m no great beauty and I’d never been the type to dress up, let alone slather on a full face of makeup and prance (well, roll) around in pretty dresses just because it made me feel good about myself. I was the jeans and t-shirt girl. The girl people would laugh at if they saw me in a dress. I actually recall quite vividly a friend stopping me in the street one day. She had a good laugh that I, for some unknown reason, had chosen to wear a dress that day! I didn’t wear a dress again for years. The quintessential tomboy, the shy little wallflower that wanted to perfectly blend into her surroundings… that was me back when I was healthy.

If my past self could look at my current self, health issues aside, I imagine she’d screw up her nose, call me too girly and make fun of me. PINK hair? Pastel at that! A floofy cat dress, complete with a bow tie? And what’s with all this damn lace everywhere? It’s almost as if I’ve done a 180 in a couple of years. It all started when a group of wonderful friends from a support group got together to organise a hairdresser to come to my house. She dyed my hair a beautiful pastel pink that I had been considering for quite some time. I had just gotten an NG tube and was curious about this pretty pastel hair trend that was going around. In the back of my mind I wondered if I could be the girl with the pink hair, instead of the girl with the feeding tube hanging off her face. It worked, and it was probably the best thing that ever happened to my self-esteem. You may be able to tell from my mentions of wanting to be a wallflower but I was, and still am to an extent, a very timid girl. Standing out was not my thing. I’d never dare admit to wanting to wear those pretty, glittery shoes, that beautiful floral dress with lace inserts or that adorable clip on hair bow back then. They were for other people, no matter how much I lusted after them.

Show the world you're still you, because(1)

I believe that my chronic illness, starting with being brave enough to go ahead with the pink hair, opened up many doors for me in regards to my self-image and self-confidence. I’d lost so much. I felt there was nothing I could possibly gain after the trauma of losing my health, my job; my whole life, as I used to know it. Sounds overly dramatic but that’s what it was. A sudden onset for me. All my losses happened, quite literally, overnight. But out of this mess, I gained confidence. I finally gained the tools I needed to not care so very deeply about what people thought of me and how I appeared to the world because after what I’d been through, any opinions on something as superficial as my appearance could hardly mean much at all. Really, what’s someone asking if my hair colour was a dare? Not much compared to coding yet surviving on an operating table in the middle of a life-saving operation. At 30. Yeah, it’s totally incomparable.

With my slow but steadily rising new found confidence I started shyly posting selfies of myself when I was a bit dressed up. Selfies were not something I’d usually do! I’d always worry too much about people thinking I was narcissistic, or that I wasn’t pretty enough, and all those things that people with low self-esteem think. My confidence took off even more as I received a few compliments here and there and started connecting with the chronic illness community via social media through images. Images of the good times and the bad. The dreadful unwashed hospital selfies, the tubes, the lines, the scars …but also the nicer times, of dressing up, of makeup, of pretty hair and cute collectibles. I’d become this girl with the pastel pink hair, fancy dresses.. and a NG tube on my face. Somewhere in there, I finally found the confidence to be me even with a feeding tube prominently displayed! Without knowing it, seeming to also inspire some people along the way. No one just considers themselves inspiring and rarely sets out for that to be their goal. It just.. happened. In finding and helping myself, I’ve somehow helped other people and even if that’s only a couple of people in a small way, it’s certainly more than what I was doing before.

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There are several movements with a focus on looking good or glamourous, even though you feel like you’re falling apart, that have taken off on social media. Karolyn Gehrig’s #HospitalGlam  (and you can find her on Instagram @karolynprg) is the most widely known. Some other friends or followers have created their own hashtags or names for modelling while on bed rest, such as #bedrestmodelling. When not feeling too great, people are creating poignant portraits that are beautiful in many different ways. I definitely recommend checking out some of these hashtags if you own an Instagram account.
(Ed: and you can find Kendall’s instagram account here: @Kendelfe it’s a confection of pink!)

Show the world you're still you, because

I personally just like to have fun with my style and there aren’t too many times where I’ll refuse to waste the extra energy into putting on the best damn dress I own, spending probably a little too much time on my makeup and stumbling into my doctor’s office or hospital appointment looking like I was going out somewhere special. Some people might say that their ‘spoonsmight be spent better elsewhere and I can’t argue with that. Others may say that their doctor may not believe that they’re ill if they don’t look sick but my argument is that if you have a good doctor or specialist, they’ll know. My doctors know me well enough to know that if I’ve no makeup on then I’m not doing too good at all. One claims I have an “Emergency Department face” when I walk in and will know straight away when things aren’t looking too good for me, even if I am dressed up to the nines. I do believe that attention to presentation can play an important part when it comes to others seeing how to feel about yourself as a person, and in showing that you’re still you and (as @minadraculada said in one of the opening quotes to this article) that it’s not over bitches, that you’re still you, still have control and that you’re still standing.

In closing, I suppose I wanted to express how you can still make gains even when you’re quite severely ill, whether that be through your appearance and fashion, a new hobby, new found friends or something else. I also wanted to show that just because we feel ill doesn’t mean we need to act or look a certain way, the way society often portrays the disabled and/or ill. Show the world you’re still you, because you’re still beautiful even if your body might be a bit broken. My only regret through all this is that I didn’t find the confidence in my appearance that I have now back when I was healthy but ironically, if I had remained healthy, I probably wouldn’t have.

Thank you for reading, and thank you to the fabulous and always lovely Rach for posting my piece!