Precious: One Ring to Bind Them All

Gollum and his Precious hung out with our family over the past week.  We’ve been listening to the BBC audiobook of the Hobbit, during car travel. It’s a brilliant way to stop sibling rivalry; school holiday road trips usually mean backseat disputes, but Tolkein’s storytelling mastery got us there and back without a single spat. I was enraptured and horrified all over again as Gollum keened for his precious ring; obsessively muttering to the object of his fascination, his precious, magical ring. He polished it so much, turned it over so often that it began to form a persona of it’s own. It became his companion, his torture, the cause of such a myopic world view that he stayed beneath the mountain, keeping to himself, convinced in his own circular thinking that the ring was his everything.

Image source_ freecodesource.com

And while the school holidays and The Hobbit have been occupying part of my brain, in the background I’ve been doing a lot of thinking. About accessibility, what it means.  And about disability and what that means.  My views on all of these things have changed over time, broadened, really.  I suspect I will continue to work on them as I grow up (!)

Before I got sick, six years ago, I was a typical able bodied person. I took for granted my abilities to get around and I experienced very little difficulty getting access to the goods and services I needed. By the end of last year, walking the length of a carpark was out of the question.  Standing for more than five minutes, impossible. So I made use of hire scooters when they were available, or avoided outings that were beyond my ability. And despite the fact I have had mobility parking privileges since my diagnosis, to most people, my disability was invisible.  Not ‘looking’ sick or fitting the ‘disabled’ stereotype meant a difficult shift in my experience of society. Every frustrating interaction with people about what was wrong with me was a grating abrasion of misunderstanding that would slowly scab over, only to be picked at again and exposed, over and over.  A kind of circular torment for my mind.

The programme I am currently involved in is all about leadership for social change.  So of course, I’ve been thinking about social change. It is very dear to my heart.  How much I would love to wave a wizard’s staff and make all of the world a kinder place!  In the absence of that (where’s Gandalf when you need him?) I’ve been cogitating over language, and how it can have a profound effect on understanding. But also about how a conversation between the society at large and people who are considered disabled seems a lofty kind of starting point.

Like any conversation without a common vernacular, misunderstandings occur.  In just one example, our classic Disability Symbol shows a person in a wheelchair on a blue background. It’s globally recognised. It is by nature simplistic, because it is a symbol, a representation.  Short-hand to describe a designated access point for people who have difficulty being mobile. But somehow, the symbol has pervaded our collective concept of what being ‘disabled’ actually means. A dis -ability to walk.  Maybe, the symbol was just born from a notion of disability that is steeped in stereotype. I don’t know if there is a better way to symbolise disability in a pictograph. It is what we have and it serves it’s purpose.  But does it also serve our thinking?  Can it help us to reignite a discussion and develop a shared understanding?

mobility

For a very long time, I struggled to accept that I too, was a legitimate member of the disability sector.  I felt I had to explain myself; should I get a bumper sticker to defend my use of my own mobility card? I felt this most keenly in the company of people who were disabled in the literal meaning of that symbol. People in wheelchairs and those who champion their rights.  As though my own limited mobility was in direct competition with their more evident disability. And so whilst I felt completely forgotten by the world of the able-bodied ‘well’, I felt unable to sit comfortably in my new designation. Invisibly disabled. A position that required my own elevator pitch of explanation, to anyone who cared (and even those who didn’t) that not all disability is visible.  It saddens me that some people within the disability sector find this hard to get to grips with.  How can we work together as a community if our diverse types of disability are not recognised by each other?

Recently, I posted on my blog’s Facebook page about the new working party that has been set up to provide more comprehensive and comprehensible data on the disabled community.  It’s a move I welcome. I have often tried to research local data related to people with disability.  There is not enough. The right questions are not being asked. We represent 24% of the population, and yet so little is known of who is in this sector.   What I can tell you, is that:
“The most common cause of disability for adults was disease or illness (42 percent)”.
You can find more general information in the statistical summary, here.
It’s interesting, that statistic.  I suspected, when I began to research for this piece that most people, when asked their definition of disability, may not even include sick people. Tell me, do you think that illness and disability are distinct from one another? There are hotly debated positions about what it all means. But does the definition matter as much as we think it does?

Or are we just a little bit precious about it?

As my friend Carly put it : “disability has different meanings to people with disability and without. For people without, it means impaired, lesser, poor them, other, pitiful, a loss of life, inspiration porn. But for people with disabilities, there’s a sense of pride, community, achievement, normalcy”.  Carly is an appearance diversity activist. Her work spans all manner of societal attitudes toward people with a variety of disabilities. Her blog is well worth a look.  Her comment got me thinking about our views of disability.  And all the rhetoric within the sector. I thought that when it all comes down to it, I just want to find the bridge that connects the diverse worlds within the disability sector to the world of  non-disabled people, to increase understanding and connection.

And because words are my go-to method for making sense of life, for me it begins here. Within the language.

I looked up definitions of disability. There were many, very wordy, carefully considered descriptions. I thought about how bogged down we get in all that verbosity.  And then I thought I should ask children; I canvassed the mums in my wider networks on facebook.  The mainstreaming of education for children with special needs has had a profound impact on the curriculum and the views of the present generation of school aged children. Where most of the pre-school children I asked had a narrower definition, like Ben; “their foots don’t work” or Asha “they ride little cars”.  School aged children generally talked about the ability factor: “not being able to do things as easily as we can” (Carter), and “(disabled people) have got a little problem that makes them a bit different” (Xavier)… and this, from Natasha, “it’s not something wrong with you, it’s like you have a gift to see things differently, and you may look different but really you’re not”.

And I wonder if I’ve been tying myself up in knots over all the layers of meaning, the symbology, the realities of an incredibly diverse society. We are not the only group skirting the statistical soup of New Zealand society. We represent, together, a good number of New Zealanders, but we are as diverse within our own sector as they are without. I suspect, social change that moves us away from the ‘othering’ begins when we stop considering ourselves as so different. When our own obsessions about our sector, our precious, carefully built ring fences break open for a new view. So, 24% of New Zealanders are disabled in some way. Not the same way, but in some way.  New and better statistical data might help us to meet the needs within our sector better.  It might inform more discussion, debate and dilemma.  It may help us better define our strongest identifying characteristics.

But it occurs to me, that social change can only happen when all of us can see that diversity itself is what have in common.  All of us, abled, disabled, invisibly or visibly, othered or outered, mainstream or fringe.

Diversity really is the one ring that binds us all.

 

Another Mother: A Story in Two Parts

I’ve been enjoying the writing prompts that are sent to me by a website I write for.
The Mighty are a wonderful platform for sharing stories that illuminate the lived experience of people with disabilities or invisible illness, or the stories of their caregivers and loved ones.  Their tagline reads
We believe in the power of stories,
the strength of communities
and the beauty of the human spirit.

Recently, they asked this:

Describe a time you saw your disability, illness and/or disease through the eyes of someone else.

I haven’t written this piece for them because it doesn’t really fit their format, there will be other things I can write for them.  This is fiction, but close to my reality at various times in my illness.

I noticed another motherPerched in the

See, their prompt got me thinking. It’s hard for me to see my illness through the eyes of someone else.  I don’t think other people have to feel any particular way about it.  But I wish with all my heart it was easier for others to understand it. I fully comprehend the perspective of well people, because I have been one. The sad fact is, that other people very rarely do see my illness.  Even when I am right in front of them talking to them about it.  So I began to think about who I was before.  I think ill people need to remember who we were before. It helps us to understand the gap between.  So this piece kind of evolved out of the idea of what might happen if the ‘other me’ met the ‘sick me’ at a school parents’ function.  What would each of us think? And how hard would we really try to understand each other?

 

other(1)It’s difficult. Attending these school parent functions.  You’d think it would get easier, the more you do.  But no! There’s what to wear and the fuss with hair and makeup.  There’s making sure the husband is home in time and the babysitter is up to speed with the kids’ routine. All the way to the function, we’re lamenting the fact that we never seem to get a babysitter so we can just go out and enjoy ourselves as a couple.  It’s always for work events or school functions.  Hardly ideal dates. We promise we’ll do that. But I wonder if we will. We’re always rushing about and there’s no time to pause and enjoy. It’s difficult, contemporary living. The juggle between work and life balance.

I know my husband will be off talking with a few of the other Dads within minutes of our arrival.  And so I locate my inner steel.  I’m wearing the right shoes, so I pull myself up taller, matching my heeled posture.  A glance around the room tells me I was right to prioritise the pedicure over the gym this morning. Although clearly, most of these women managed both. Polished, white teethed smiles flash across at me as I move over to a group of Mums I know.  We are still uneasy together, but I take a deep breath and remind myself that we are all in the same boat.  We greet each other cheerily and the conversation resumes about the teacher. She is all slender sophistication, that one. I spot her mingling with another group.  A father gazes at her with adoration in much the same manner as I have seen his son.  It’s sweet. I self consciously watch the diamonds flash on a finger wound around the stem of a wine glass.

Wine.  That’s what I need!  I smile back at the familiar faced group and make a quick detour to the bar.  Hubby catches my eye and nods a silent order. Fortified by familiar feel of the cool glasses in my hands I deliver his and make my way back towards the huddle of women I’d been chatting with.

On the way I notice another mother perched in the shadows along the side of the room. She looks a little pale and is a bit hunched over.  Uncomfortable in her own skin.  I feel for her, and I wonder if she is a bit socially awkward. Then I notice her cane. Oh, she must be that sick one.  I heard some of the mums talking about her once.  Her son is a playground troublemaker.  I remember making a mental note to avoid adding him to the birthday party list. Apart from looking a little unsure, she doesn’t really look sick. I couldn’t remember what it was that was actually wrong with her.  Something weird. Maybe she’s weird?  I thought. She doesn’t usually come to these things, I wonder why she is even here tonight, if she is not even going to mingle?  And then, in spite of myself, I am walking towards her, smiling and pulling up a chair alongside her.  I really hope I am not going to get stuck here for long.  I do find myself in these situations, don’t I?  My hubby always rolls his eyes at me when I do this.

Talking with her isn’t easy. She is struggling to smile and make small talk. Her husband looks our way and sends me a thankful smile. Oh no.  Now I am really stuck. But before too much longer, we have relaxed into a conversation.  We talk about our children and the upcoming school play. There is some laughter and commiserations about the hassles of dealing with babysitters. Hard to find good ones these days. I find myself looking at her intently. There is a shadow of someone else around her eyes. Did I once know her, before she became ill?  And even though I am internally telling myself not to,  I ask her about how she got sick.

She seems hesitant to talk about it, but I settle in to listen. She exhales and begins to tell me her story. I was much like you, she began.  And what she told me filled me with discomfort.  She got a bad virus (who hasn’t at some point been felled by a virus?) but for her it was the start of something much worse. Her heart stopped working properly. An abrupt change in her ability to stand, dizziness, nausea, the loss of other functions.  The list went on, she said, but she spared me the details. Everything, she said, that bodies do automatically.  I began to imagine what that kind of broken body must be like to live in. But I didn’t want to imagine it for long. I’m ashamed to say it, but hearing her story made me wonder if I could handle what she was going through. Six years she’s been sick for. Almost the entire length of her son’s life. I didn’t think I could.  My mind flashed through all the normal tasks of a normal day. No, there is no way I could manage being sick like she was.  I wondered, briefly, how she did it.  And then a desperation to be talking about anything else overcame me.

I thanked her for telling me all about it, I think I told her something like she was brave. I think I patted her hand.  She thanked me for coming over, looking across towards the huddled groups around the bar and graciously giving me an out. Thank goodness, I thought, as I asked her if I could get her a drink.  She asked for a water, so I went to get her one. When I returned her husband was back with her. She was looking paler.  He had leaned in close to hear what she was saying.  I unobtrusively put the water on the table near her knee and slunk away to my own husband’s side.  His hand slipped into mine and I squeezed his back. I doubted if I could explain to him how glad I was to have the ordinary troubles of hair, makeup and babysitters, the general ‘difficulty’ of going to a school function. Then someone asked me about the woman I had been talking to, the one, you know, with the boy who was often causing trouble.  I looked across to where she’d been sitting and she was gone.  And I told them that she was really nice.  Much like us.  Only dealing with a whole lot more than most of us understood.   I saw the smile flicker off the face of the asker.  The inward groan. I didn’t like seeing my thoughts etched out so plainly on someone else’s face.

And then I was drawn into a fun conversation, ordering another wine and moving on. I shook off my unease about the things she said, the alternate realities I’d rather not consider.  There was nothing I could do, was there? And she’d gone home. Really, there was no point in ruining a great night.  These school parent functions are great once you get into the swing of things.

I do think of her every now and then. When I am organising a party list, or doing mother help at school. It might cross my mind briefly when I am loading groceries into the back of my car. Or sometimes, when I am looking at my face in the mirror. And like the first time, the thoughts come and then they go. Because who am I to think I have anything useful to offer?  It’s difficult. It’s a juggle. And I move on.

____________________________________________________________________

otherIt’s difficult. Attending these school parent functions.  You’d think it would get easier, the more you do.  But no!  There’s all the pre-planning and resting up that I need to do for the ability to do one night out.  Extra medication.  Mental fortitude.  And there will be the payback afterwards.  Days crashed in bed. More wasted time while the tasks for the family mount and mount. I don’t get to many of these sorts of things, but I try to attend one or two a year.  And I love the drive there, hand on my hubby’s knee.  Feeling like we are on a real date, even just for the time in the car.  The beauty of the city lights reflected on rain soaked streets.  The privacy and togetherness of our car coccoon.  Just us.

I didn’t manage to do my hair or nails, those things seem to have gone by the wayside. I did manage makeup.  I check it in the passenger mirror.  The woman looking back at me is puffy faced, tired and pale. I wonder where my real self is hiding.  Somewhere on the other side of illness. I wonder if she is waiting for me there. If we will recognise one another.  But there is so much for my husband and I to chat about while we make our way through the traffic that I am soon distracted from my own reflection.  Any alone time together feels like we’ve rewound to the early days.  I look across at his profile and marvel at how I still feel this way after so long.  After so much water under the bridge.  He’s a good man, my man. I wish he didn’t have the dead weight of my illness to carry with him everywhere he goes.

When we arrive, the difficulty of walking from the carpark to the venue takes it out of me. I send my husband into the throng and perch in the shadows of the room, hoping that no one will talk to me.  Hoping that my hammering heart will slow to a calmer rhythm and the planes of the room stop warping and fading on the periphery of my vision.  Hoping the nausea will subside so I can form words without retching. I  want to be at home.  I wish I could fast forward to the end of the function.  Why am I even here, if I am not able to mingle?  I see that my hubby is having an animated chat with someone and it brings me relief. Maybe if he talks to five or so people, we’ll be able to consider the job done and go home. I wonder why I push myself to be part of a group of people who don’t actually want to know about me, about us. I don’t know.  But somehow, I know that I desperately want to be a part of this world, to know about them. I remember, in flashes of colour and animated laughter, what it felt like to be out with friends, drinking and talking about interesting things.  So often these days my only conversations are about illness.  With doctors, with other patients, with myself.

And then one of the mothers comes over to talk to me. She seems curious, and nice about it. It feels good to be able to explain why I am lurking in the shadows. I wonder if she can tell how much I long to stand and laugh in one of those sociable huddles. How I wish my son were more a part of things in the playground. And then, as fast as she arrived, she has gone.  I am jealous of the ease with which she sways across to the bar in her incredible shoes. I feel the old uncomfortable conflict of opening up. My hubby comes back,  he knows my best-before date has arrived. We make a move to go. I take a sip of the water she brought me and an unbidden sting in my eyes ushers me out the door.

I do think of her every now and then.  When my son is left off another party list, or I can’t volunteer to help with a school event.  Even when I am doing something as ordinary as filling in my online supermarket order. Or trying to find myself in the mirror. The thoughts come and then they go. Because who am I to think I have anything useful to offer?  It’s difficult. It’s a juggle. And I move on.

Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

www.rachelfaithcox.com(11)

When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

Margot le Page -What If?

watercolour splodge with the words 'What if this is as good as it gets?" in white text

This Meet My Peeps guest post is written by a friend I met in my patient group. Margot Le Page is a wonderful writer and a gutsy person.  She asks a question each of us comes to at some point in our chronic illness journey.  And answers it in a powerful way.  I think you’ll agree that Margot’s perspective is worth sharing. Thanks Margot for sharing your story here.   -Rach

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I don’t remember when I first heard this question. It’s not original.  However, I do remember asking myself.

The first time was a couple of months after a 9 hour massive back surgery to correct and stabilise my spine which was basically collapsing. I had scoliosis and ‘rotting ‘discs. I was 47.

I had led an exciting and complicated life to this point. From Oxide Street, Broken Hill to Rodeo Drive Beverly Hills, 2 marriages, 2 beautiful children. I was confident, extrovert and capable.

But, I had always been a bit sick. Nothing too major. Adenoids, allergies, appendix, basal cell carcinoma, pretty much the full a-z, all the way to ’zoans (ie protozoans my gut!) But seriously, nothing really hit me hard and I always recovered, following my Mother’s belief that we were a family of self-healers.  She should know after all, surviving an aerial gliding accident, 36 and pregnant, resulting in massively traumatic injuries including a leg amputation and the awful loss of the little girl, Helene Julia, she was carrying.

I had been given the ‘bad news about my back when I was 17. I was training to be a paediatric nurse with access to great doctors and highly respected specialists who told me it (my spinal curvature) was going to get worse and I would eventually end up in a wheelchair. I heard them but certainly did not actually believe them.  Well, not on the surface anyway. Denial can be a nice safe place sometimes.

Maybe, just maybe somewhere deep inside my head I knew those boffins were right and I proceeded to live my life in a hurry, keen to get away from that place. I sought care and treatment away from conventional medicine and explored a myriad of alternative treatments. You name it, I’ve tried it. Acupuncture, absent healing, aromatherapy, cranio-sacral therapy, osteopathy, a Russian Mystic, numerology, past-life, sacred oils, Indian Brahma Kumari meditation. (I’m sure there’s another a-z here too!)  I studied Reiki and nutrition, Pilates and yoga.  And spent a lot, I mean a lot, of money along the way.
Needless to say, those know-it-all doctors I had seen many years before were sadly, pretty right.  I came back to Australia from the US to seek conventional medical wisdom in a country where I trusted the system and had family and friends to support me.

So, there I was. Single, adult kids doing their thing, a long way from Los Angeles and my ‘other’ life, in a reconstructed body I couldn’t yet drive, barely surviving on social security, fighting a bitter divorce, needing opioids, wearing an awful shoulder to hip brace, using a walking stick…… pretty bloody depressing actually.  I cried and cried for lots of things.

And then somehow, with no tears left and a couple of truly wonderful friends helping me, my head not really together, I asked myself the Big Question. “What if this is as good as it’s going to get? Can I actually, really live like this? Maybe forever?”  The answer came… not immediately. But then I surprised myself with a resounding. “Of course I can!”. My thinking changed. I recalibrated. I thought of all the things I could do, not what I couldn’t. I didn’t feel so bad after all. I could get on a tram 600m from my front door when my drugs kicked in, and with one stop would get me to a bank, post office and supermarket. It might take all day, but, I could manage. I began to notice little things again. Cracks in the footpath where tiny daisies pushed their way through, sunlight playing through my blinds, sounds of birds and crickets….. I was all right.

11 years later I’m asking myself that question again.
5 further back surgeries, broken rods, pulmonary embolisms, dural tears, spinal fluid leaks, a craniotomy, I even had my gall bladder out in there somewhere too and my finger stitched!
I now have 13 vertebrae fused (great posture), increasing numbness and weakness in my right leg and a new diagnosis, Dysautonomia. Great?  Not.  Terrible? No.

My dear Mother, now aged 85, only 27 years older than me, currently not in great shape, has taught me so much. So, if, if, I live to her age, can I go for another 27 years like this, like I am now?
Of course I can.  Not ideal, but….. (big breath)

There will be more challenges ahead, I know that. I will no doubt ask myself the question again, probably more than once.
With less I have become more.
I am a good mother, a good partner a good friend.
I don’t mind me.
I am fortunate.

Meet My Peeps

Hello!

In the last six years I have met some incredible people.  Connecting online with others who have chronic illness has been one of the greatest supports and encouragements of my journey.

For the whole of 2015 I will be deeply immersed in the Be.Leadership Programme.  And that means, a bit less time for blogging.  I have homework!  And readings! And deep thoughts to “thunk” (!)  I will still be here, doing what I do.  I just might not be doing it quite as frequently.  According to the calculator, I’ve been averaging four posts a week since I started blogging in May last year. That is a tough rate to match now that I am a bit busier.  But also, I feel like it’s a great opportunity to broaden the scope of the Chronic-ills of Rach.

I have called on ‘My People’ to see if anyone would like to share their story in this space.  I’m calling it the ‘Meet my Peeps Guest Series’.  And I am so chuffed that you will get to read the stories of some of the people so dear to my heart.  Each time I post from them, I will introduce them, tell you how we met and then you’ll hear their stories.  There is a diverse range of guests, some, like me, have a form of Dysautonomia, but we’ll be hearing from people with other chronic conditions too.  People with Invisible Illness, invisible disabilities and also people with conditions that are not invisible. They’ll be sharing with you their perspectives about getting through, getting on, and getting over the challenges they face. Welcome to the series, I can’t wait to see your responses to their heartfelt words.

Meet My Peeps

Big love to you from me, remember, I’m still here!  In between times, I’m just getting a little help from my friends. 🙂

Kia Kaha. Stand Tall.

Today is International Day of People with Disability.

It’s a day for celebrating difference, for acknowledging ability.  It’s a day for shouting out achievements from the rooftops.  What a brilliant group of people live in the category of ‘People with Disability’.  As I get to know more people in this new community of mine, I am staggered.  I wonder if you are aware too?  When was the last time you interacted with someone of differing ability?  Did you feel strange? Did you wonder about who they are?  Did you get beyond the difference to see the similarities?

I was walking through a group of parents at my son’s school the other morning.  I have only been walking with a cane this year, apart from it, my disability is largely invisible.  I have a neurological disorder that makes it difficult for me to stand for long.  Getting around is increasingly more challenging. I use the cane for balance and it’s built in seat as somewhere to perch when the dizziness overwhelms.

“MAKE WAY FOR THE DISABLED LADY!”   my son yells out, like a town crier.  I cringe.  I don’t like to be looked at, at the best of times.  I felt at once awkward and neon lit.
“Zed!” I admonished.
“What?!”  He looks at me, his eyes wide.  He grins.  
“But you ARE, Mum! I’m just getting them up to speed”.

I look at his face and think about how simple it all is when you are seven. How simple it really should stay.  I think about how adulthood and social stigma and self-consciousness and the media and social norms all teach us about what
“disability” is.

It’s time for a different conversation.  It’s time for me to join my son in getting people up to speed.  I spent last Saturday night at a function for the Be.Accessible Movement It’s the first function I have been to where I felt able to sit when I needed to, able to be real about how I was feeling without it dampening the mood in the slightest. There was room in that function hall for difference.  No questioning looks, no awkwardness.  I was not ‘other’ but, ‘another’. There were genuinely fantastic people to meet, fast connections; no barriers.  It was a revelation to me.  I wish that all of society could function this way.  And I believe it can.

If I can make a difference to you, if you can make a difference to someone else.  If making a difference is simply in noticing the sameness within difference, we’re on our way.

This beautiful verse crossed my path yesterday.  Perfect timing for this International Day of People with Disability.  (FYI:  the Kahikatea is a wide branching New Zealand native tree).

By Henry Melburn

E tu kahikatea
E whakapai ururoa
Awhi mai awhi atu
Tatou tatou e, tatou tatou e

Stand tall like the kahikatea
To brave the changes
Embrace one another
We are one together

Not vain the weakest, if their force(1)

I made this facebook cover this morning (feel free to use it for your facebook today).  I thought Homer’s words express what I am trying to say.  There may be differences in the ability of the “disabled”  that people consider to be weakness.   But there are strengths beyond belief. There is value and diversity and an untapped resource of brilliance in this community.  We need to start seeing all diverse groups within our society as part of the whole.  Let’s unite en force:

Screen Shot 2014-12-03 at 9.44.00 am

Celebrating difference and acknowledging ability and making it possible for everyone to just, be.