In Your Time

Tonight I’ve been taking it slow, listening to Bob Seger and letting a stressful day fall away.

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On Sunday, I overdid it a bit.

There was blogging, a birthday breakfast, a bike ride, presents, pilates, a few thousand loads of washing (actually only around five, the rest still wait), dinner, a long walk, a bath and bed.  It was the perfect day, the perfect spring weather. It was everything gorgeous. That list of activities in one day was unheard of, for me, before. And because I was in high spirits and feeling invincible, seizing the day and smelling the roses… you know, that kind of amazing day… I overdid it in a rather large way.   It was also daylight savings in our part of the world, where the clocks go forward one hour.  And that means I did all of that in even less time!

On Monday I woke to a familiar feeling. Overnight my muscles had become encased in concrete, my brain invaded with a fog I couldn’t shake. The nausea I was so quick to forget rolled back in over my horizon. I opened my eyes to a day that filled me with fear. Is it back? Are the good times over?

It’s hard not to worry about that. The niggles in the back of my mind as I laboriously mount the stairs.  Stairs I ran up only last week.  It must be the pilates, I think. Yes, that’s it. That’s all. It’s normal.  Yesterday I told the hubster I was feeling a bit below par. It’s the lag from daylight savings, he reassured me. Everyone at work is feeling below par too. That’s what it is.

Tonight he came home and found me looking out my bedroom window from my old perch on the bed. I haven’t been here during the daylight hours for a while. Not feeling this way. The kitchen was a fright, an entire jar of powdered ginger fell and I couldn’t face bending to clean up the mess.  I left it on the floor and came to lie down. My tears surged upwards when he looked at me with those lovely eyes full of concern. Do you think it’s back? he said, his voice quiet.

I hope not.  I’m just taking my time.  A bit slow today,  I said.
And probably, that’s all it is. Just a bit tired. A bit of seasonal lag.

I’d like to be able to feel tired and not worry. I’m trying to focus on taking it easy and breathing through the fears.

This song was on the playlist tonight and it made me feel a bit better. Are any of you out there doing things in your own time tonight?  I wish you a restful night of refreshing sleep.  As Bob Seger says:

And after all
The dead ends and
the lessons learned
After all
The stars have turned to stone
There’ll be peace
Across the great unbroken void
All benign
In your time
…you’ll be fine
In your time.

Spun Sugar Skyline

photo taken through aeroplane window of clouds, as I left Christchurch

Candy floss carpets the sky fields outside my window. The sun has ducked beneath the horizon and the last of it’s rays candy the tops of the clouds with stripes of toffee.  A spun sugar skyline. I’m flying home from an important weekend away. And it’s fitting that the sky displays such sweetness right before the darkness. It echoes the word that describes my time away: bittersweet. Because, this time, we’ve been in Christchurch.  A city close to the heart of my inner child.

The last time I was there was 32 years ago, and I feel so fortunate to have been back. Since then the city has endured a natural disaster none of us expected. It was sad to see the city crumbled; even five years after the earthquakes brought down the buildings, Christchurch is still in ruins. I saw new buildings, yes.  Some hotels and the theatre have been rebuilt. There is construction happening.  But far more compelling was the yawning chasm of the the cathedral ruin. The heart of the city, shredded and shaken. Taken.

photo of the ruined Cathedral in Christchurch

 

Street art adorns the abandoned buildings, an attempt to bring colour and vibrancy to the emptiness.photo of street art on the walls of abandoned buildings in the Christchurch city centre

Cordons and construction fences, traffic cones and danger signs. There are plans to garden the rubble. To build inner city orchards and green spaces. But I surveyed a scene so different from the Christchurch of my early memories… I felt disoriented. Standing there in Cathedral square, trying to retrace the skyline of my mind’s eye, I could not find my bearings. Time and tectonics have taken the town I knew and replaced it with something apocalyptically new. 70,000 homes have been demolished in the wake of the quake. All of that displacement. Can you imagine what that does to a community? My heart understood that for the first time as I stood there in the places of my childhood. Until this visit, the story of the quakes were just news headlines; bad news best forgotten.

Our speakers over the weekend were people working right in amongst the community, people with vision for a more connected, more responsive city. A place of togetherness and possibility. There was much talk about the opportunities created by the disaster.  About Christchurch becoming the most accessible city in the country. But among all the positivity, my mind kept turning to the people who have endured more than 20,000 aftershocks.  Every time the ground shudders, they’re taken back to the days when trauma shook their bones, broke their homes. Changed their geography and mapped new territories of terror.  I keep thinking about how hard the last five years must have been for them all. Five years of hard slog, trying to redress the damage, move on, make do, push forward. It’s so difficult living in the aftermath of all that. I salute them all; those resilient Cantabrians. I feel sorry that I didn’t understand until now.  It’s not over for them. It’s a generational trauma. Long after the papers have stopped reporting, after the sensationalism has ceased to make their stories headlines, it goes on. They must be beyond exhausted. Their grief must seep into the mortar of the rebuild. Into the future they create. How can it not?

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I visited my old street.  My old home. My old schools. I went across to Lyttleton, remembering the lazy Sunday drives through the tunnel for fish and chips on the wharf. I saw the southern skies, and felt the beating heart of that beaten city. Bruised, battered. Beautiful brave hearts.

A bittersweet collection of moments for me, a relentless march of time for them.

I gaze out the aeroplane window at the dark of night.  Below me, in inky anonymity, the long white clouds of my country carpet the way home. I am flying back to my harbour city, safe harbour, my home. My family will meet me and I will slip back into my role as wife, mum and aunty. It’s school holiday time. A breather in the usual routine. There will be pyjama days, horses and horsing around. Playdates and dvds, dry-cleaning and the small ordinary somethings of a simple life. Home. I will relish every minute of all of it. My life.

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Perched on the edge of the Pacific rim, our tiny country tucks itself into bed for the night. For most of us, there is a childlike faith in the stability of our island home. We like to forget what Christchurch tried to teach us. Tonight I will go home and be grateful for the temporal solidity of my life. For the present state of wellness. Of safety. I won’t take it for granted.  I will tuck my temerity in my pocket and use it wisely. We are all at any time, a moment away from our world being shaken into something we do not recognise.

A Little Like Hope

There are patterns that shape you.  Experiences that make you who you are.

Being sick for the last six years has fundamentally shifted my expectations of life. After all this time, I’ve been in a pattern of expecting things to get worse. I expect things to be hard. I expect side-swipes and surprises and I expect to find ways to cope with all that. But I never expect things to get better. Being optimistic about my health is something I have avoided for so long. All the science, all the ways of being that my body has trained me to accept.  All of these things have shaped my thinking. Being positive about the future of my illness always felt like a redundant pastime. A fruitless and futile exercise in wishful thinking.

So instead I have been resolute. I have tackled my illness like a maze. I have tried to be systematic in my research; I have sought the counsel of wiser science brains than my own. I have searched and pushed and applied myself to finding solutions. And that has been a wonderful focus for my mental energies. It’s less of a dare to the universe than positive thinking or pollyanna prayers. It has seemed logical and appropriate.  Define the problem, seek a solution.

And despite my beliefs that only a logical solution could fix my problem, just recently, the problem has been evaporating. Like the puddles leftover from our long, wet winter. The sun is beating down and shrinking the periphery. Rendering hard clay from the mud and quagmire. Setting my feet on solid ground. I’m feeling well. I’m exercising. Last Thursday I did pilates and followed it up with a walk in the country with my girls, Bee and Lulu.  I walked along the road and back again!  If you have been following this blog, you will know how extraordinary that really is. Where before even one of those activities would have put me back in bed for a few days, I have backed it up with more activity.

I walked! With my girls Bee and Lulu. There,

This weekend I’m in town with my hubster.  The last time we did this was a year ago. And it was so very different. I have no cane. Instead of sitting at the table, wondering if I can stay upright in the seat for the duration of dinner, I sat comfortably and talked with him there for three hours!  We enjoyed a six course degustation menu and a conversation that spanned worlds and made us laugh like we used to. We celebrated. Ten years of marriage. Parenthood. And something we’ve been a bit worried about celebrating. We celebrated my wellness. We’ve been so afraid that to acknowledge how well I am doing would tempt fate. So we haven’t. But last night we talked about it. We exhaled. We let ourselves enjoy this beautiful, fragile thing.

Want to know what feeling well is like?

It feels a little like hope.

I walked! With my girls Bee and Lulu. There,(1)

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.

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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!

Deep End Stuff

She was a tough nut sometimes, my Mum.

Brought up in the Bay of Islands, she lived down by the water beside a picturesque bay. I don’t think it was as idyllic as it sounds. Survival in the post war years, off grid with five kids can’t have been a walk in the park for her parents.  She spoke of having to go in the rowing boat around to the mouth of the river once a week so they could wash the clothes in fresh water. Neither she nor her four siblings could swim, and one terrifying day, her baby brother fell over the side. She recalled seeing his blonde curls just above the surface of the water, the rest of him below. Her mum managed to get him back into the boat and on they went to do the washing. I think it haunted my Mum, that memory.  So even though she wasn’t a strong swimmer herself, she was determined that we would learn to survive in the water.

Our introduction was at our neighbours swimming pool. It had a very deep end, and after splashing about in the shallows, one at a time, Mum took us along the outside pool deck to the deep end. “In you go!” she said. In I went, clinging by my fingernails to the shiny squares of the edge.  “Now-” she said, “push off from the side and use your arms and legs to keep your face out of the water” showing me the doggy paddle action with her arms.  I was so afraid.  I wanted to keep my tenuous grip on the tiled lip of the pool. But I trusted her. And in one crazy, better-not-think-about-it-moment, I pushed off. I paddled like she said.  My legs pushing against the water beneath me. Around in a big arc, the deep blue beneath me seemed to stretch down endlessly.  But I was moving! And as long as I was moving I was staying up near the top! I craned my neck and panted with the effort. I was exhilarated! As far I was concerned, I was swimming! I remember that moment because it was one of my biggest. I was afraid. I did it anyway. Some moments just stay with you. Do you remember when you first got into the deep end?

I was afraid, but I trusted her

Tonight I had a wee panicky moment, thinking about what lies ahead of me on Monday. I’m going to what is called a casting. A big retailer is going to check me out and take some test shots to see if I am a good fit for their brand. I’ll be there in front of the cameras, having a go at posing and trying to look natural instead of petrified!  I was initially feeling really excited about it, just kind of zen, you know? Then Kelly, the lovely girl I talk to at the agency, asked me if I had any questions. Um,
“Should I take my suck-it-all-in-pants?” I asked. She giggled. I think I surprised her with that question, I guess she deals with a lot of girls who don’t need suck-it-all-in-pants. But Bridget Jones and I, we are kind of attached to them. They help with the jiggle and give me a better contour. She asked me again what size I am. “18-20”, I said.  When I got my contract from Vivien’s I wrote my sizes down, and I noticed that my contract states that I can’t change my size. And, you know, I’m such a good girl, that for the last few weeks, I’ve been studiously maintaining my booty!  “Hmmm”, she said, “I wouldn’t have picked you for an 18-20, their sample size is 16”.  Ah. “Guess I’d better take the suck-it-all-in pants!” I laughed. “It’s a plan!” she said, and I began to imagine myself squeezing in to pants two sizes too small. This rumptious rear might find that a bit challenging!

So since that little exchange, I’ve been feeling a bit more nervous.  My hubster came home and asked me what was up.  I must have been chewing on my lip. I explained it all and he smiled that Bobby Dazzler grin. “Babe,” he said, like he was talking about an irrefutable fact, “it’s just deep end stuff. We’re good at deep end stuff!  Just get out there…and see what happens!”.  He’s good like that. Reassuring. Believable. And he’s right, we are good at ‘deep-end’ stuff. We’ve had lots of practise! So I am letting go of that safe space I inhabit on the edge of the unknown. I’m pushing off, regardless of how frightening this new world of modelling is to me. I’m just going to think of my mum, showing me that paddle action, I’m going to keep my head up and give it a go.

What’s the scariest deep end moment you’ve had?
How did it work out?
Did you keep your head above water?
Oh please, tell me encouraging stories!

Post Script:  it went well!  I fitted their samples by some miracle of brand-size-variation and the suck-it-all-in pants were not required.  Phew!  Just have to wait now to see if the brand manager thinks I am a fit for their stuff.  It was fun 🙂

Words, Margins, Bias and a Small Whisper

I have a very loving relationship with words. Words and I have been going around together for many years. But sometimes, words disappear and I am left floundering without my dear friend. Lost in the land of no writing. When that happens, I try reading. I listen to music.  I try to be more observant of what is going on around me.  I try to find the ‘muse’. But she is even more elusive than the words.

So I am just going to collate here a few things that have been skipping around my brain, skirting the edges and looking for a place to land. Usually these things arrive for me all packaged up and ready to write, but not this time. So bear with me while I purge to the page, all the little bitsies that don’t seem to fit anywhere in particular.

First and most importantly:  I got my histology results!  The “margins were clear,” which means, no more high grade pre-cancer cells proliferating on my cervix. Woop!  I am so happy about that!  It was such a weird sensation to get that news, because I wouldn’t have been at all surprised if my luck really was that bad. Ya know?!  (I’ve been reading about types of cognitivie bias, thanks to my friend Beth… this type of thinking is an example of negative bias.  You can read about 9 other types here). So I am thankful and happy and so full of the joys of spring over that very good news! That medical terminology about margins… it got me thinking about the margins of society, how some things are marginal, and some people are too.  I thought about how often I doodle in the margins. And I wanted to write a post about that, but I couldn’t make it happen. So instead, a paragraph. The margins were clear. And… exhale! By the way, did you know that Colin Firth is not just rather attractive, he’s also deeep?!  Lookie here…

 

If you don't mind haunting the margins,

During the course of my Be.Leadership programme, we have examined the concept of unconscious bias. All forms of bias. The challenges to clear thinking and accurate assessments of situations. I think being able to identify bias is a really important criticial thinking challenge for all of us. Particularly at this juncture in human history.  My cousin posted this on facebook from the Dalai Lama.  It says it better than me.  But do look also at this article if you are interested in discovering the types of cognitive bias that might be dogging your thinking. For me it is a constant search and stretch as I seek objectivity and good decision making, as a mother, friend, wife, sister, daughter, citizen. I think of these biases as ways of thinking that adjust my sails. My course can be drastically altered and I can end up way off course if I let them influence my thinking without conscious awareness.  Being aware helps me to counterbalance my thinking.

If you don't mind haunting the margins,(1)

So that is me and my jumble of thoughts today.

I also want to tell you, but almost in a whisper, just so I don’t jinx it, that I am feeling really good. Stronger. It’s not what I expected as I begin to wean off the meds that have helped me so much. So… fingers crossed.  I’m going to employ some gambler’s bias (‘it’s a winning streak!’) and let my ship sail quietly into a safe harbour.  I’ll stay there as long as weather permits.

Shhhhh, let’s not rouse the wind from it’s four corners.  Shhhhh…