Belinda Taylor: Would you Rather…?

This ‘Meet My Peeps’ post comes from one of my favourite writers, Belinda Taylor.  A former ICU Nurse, and general Science boffin, mother of Milly the Cat and Monty the budgie, and wife of Chris; Belinda has completed a Diploma of Accounting in the time since her diagnoses.  She has post viral POTS complicated by Myalgic Encephalitis. I don’t think she’s been formerly diagnosed with a wicked sense of humour, but she’s got one.   You may recognise her style from the excellent spoof report she wrote for this blog recently, ‘Breaking News’ all about a cure for chronic illnesses.   And if you are working on one of those 8 Great Ways to Live Well, and need something funny in your day, look no further than Bel’s two pieces.  She makes me smile this girl!

Photo of Belinda Taylor and the quote: "Having a chronic illness of any sort is like a life changing game of 'Would you Rather?'"

Some friends and I used to play a game called “Would You Rather?” at work. Being nurses, it was always pretty easy to find something appalling and stomach-churning to test where your limits of tolerance were. Poo in the eye was always a favourite.
“Would you rather… poo in the eye? Or, to eat a teaspoon of sputum?” See? We were pretty gross.

Having a chronic illness of any sort is like a life changing game of Would You Rather? Would you rather, have your mind deteriorate and a healthy body? Or, have a functioning mind and have your body crap out on you? I’m not sure the first option would be a whole lot of fun, unless your deteriorating mind made you hallucinate all day that you were being fed chocolate macarons by Jamie Fraser from Outlander, while lying in a bubble bath.

Having POTS and ME, I can 100% say that the second option isn’t a bundle of laughs either. I would much prefer poo in the eye. Having your mind say “Yes!” while your body says “Hell, NO!” is a lesson in frustration that is played out in the interaction of your body and mind every day. If my mind and body were once friends, they would have broken up by now and only spoken on birthdays and the occasional ‘like’ on Facebook.

A typical day might go something like this:

Scene: Our heroine is lying in bed in the morning, having just woken up.

MIND: Ugh, I really need to go to the loo!*

BODY: Ha! You know I’m going to make you face plant if you try and get up before you’re well hydrated and have taken your meds

MIND: -but if I drink more, I’ll need to go to the toilet even more!

BODY: Well, ok, if you want to risk it…..

MIND: Fine, you win. I’ll drink this bottle but I’m not waiting for the meds to kick in.

BODY: OK, I can live with that.

erm, what would I know_!(2)

Our heroine commences a wobbly walk down the hall to the bathroom for sweet, sweet, bladder relief.

MIND: I suppose now we’re up, you want to be fed?

BODY: Well, I’m not too fussed. I’d be willing to let you do something else first. Feed the cat maybe, put some washing on.

MIND: Wow, ok, thanks. I’ll get onto that then.

1 minute and 43 seconds later…..

BODY: FEED ME NOW!!!!  Stop what you’re doing immediately and feed me! I’m nauseous, I’m dizzy, I must be fed right now or I really think I might die!

MIND: But you just said-

BODY: –I know, but now I really have decided that feeding me would be the best thing.
I’m getting hanGRY**!

MIND: Well, ok, if you’re going to be like that about it, here, have some breakfast.

BODY: Ahhh, thank you. I love you.
Thank you for feeding me and looking after me with this delicious food. You really are the best.

MIND: You’re welcome-

BODY: -Gah!! What is this?? Now I have food in my belly, I have to do work to digest it?? Seriously? Well you know what this means, don’t you? I’m going to have to steal all the blood and give it to the stomach. Sorry brain, you miss out this time. And heart? Yeah, you’re going to have to work really hard to get the pitiful amount of blood I’ve left you up to the brain. Sorry about that, but I really have my work cut out for me here with all this digesting.

1 hour later

MIND: Do you think it would be ok if we moved now? Maybe we could try a bit of exercise?

BODY: Oooh, exercise, yes that sounds like fun. What shall we do?

MIND: Maybe we could just walk down to the corner and back again.

BODY: Yeah! Let’s go. This sounds amazing. Woo Hoo! Exercise here I come.

Our heroine makes it to the first corner down the street.

BODY: I’m feeling awesome. Can we go further? I’m loving this! I feel so freeeeeee. Let’s go to the next corner. The next corner really would make my life complete, you know.

MIND: Are you sure? You always say you’re quite tired after exercise. I don’t want you to overdo things. I’m trying to look after you. But the next corner would be pretty amazing…

BODY: Yes! Let’s do it. This is… easy.

Our heroine walks to the next corner.

BODY: Um, yeah, sorry about this, but I don’t feel so good. I think the next corner might have been a bad idea.

MIND: But, you said you felt great, you were keen to go.

BODY: What would I know?!

MIND: Well, quite.

Our heroine inches her way back home, to spend the next few hours (days/weeks) cursing her stupid body for being a bit of a tool***.

What would you rather, poo in the eye? Or chronic illness?

 

NB:  Translations below for non-Australians/New Zealanders…
* loo = toilet
** hangry = hungry +angry
*** being a bit of a tool = being a bit of a dick

 

 

Anna Kennedy: Nowhere Land

Today’s guest post comes from Anna Kennedy. Anna is a psychologist who became sick with severe ME (sometimes referred to as Chronic Fatigue Syndrome) and POTS.  Here, she thoughtfully discusses the mindset that has helped her navigate ‘Nowhere Land’.  I can really relate to the part where she talks about being able to do things that used to be impossible and how she thought she would never take that for granted again. Thank you Anna for sharing your experiences here.  I know that many will relate to your journey.

________________________________________________________________

He's a real nowhere mansitting in his

This is kind of how I feel these days. I have nothing much to show for the years since ME (Myalgic Encephalomyelitis) and its sidekick POTS (Postural Orthostatic Tachycardia Syndrome) became my constant bedfellows.  During the first horror year, when I was bedbound and lost 25% of my body weight, I at least looked the part.  ME was written all over my face, not to mention the rest of me which couldn’t stand up long enough to make a quick cuppa.  But nowadays I look pretty normal.

I’ve improved to the point that I’m more moderately affected with the odd severe dip thrown in just to keep me on my toes. My symptoms are less severe, but still unpredictable and frustratingly limiting. I’m too sick to hold down a job, but can manage paced domestic tasks and the occasional social event, all accompanied by the predictably unpredictable multitude of symptoms and payback that ME dishes out just for living.  If I lived in a silent dimly lit bubble and did absolutely nothing except lie down for 6 months, I expect I may even begin to feel quite chipper; but unfortunately there’s that little thing called Life that gets in the way of that.

These days I feel a gnawing kind of improvement guilt. I guess it’s probably akin to a kind of survivor guilt, a knowing about just how traumatic this illness can be.  Though the memory of severe ME is still fresh, I am not completely confined to my bed.  But I carry with me an awareness (that I didn’t have before) of the many who count my very worst days among their very best; who’ve lived for decades in a 24-hour terror of suffering so ghastly that it’s unfathomable for those who do not live it. I feel guilty that I was completely ignorant about ME before I was diagnosed. Guilty that I didn’t use my pre-illness years working as a health professional to recognise and educate people about ME and help those who I did not even know existed because they socialised online and lived within the four walls of their bedroom.  I feel guilty for improving when my friends with ME have not or have worsened and I still can’t do anything to relieve their suffering.

I feel guilty for not being grateful enough for the improvements I’ve made.  I remember when I was severely ill thinking that if I could just manage to cook a meal for my family again, I’d be fine with that. I yearned to load the dishwasher or take out the garbage. That was enough quality of life for me I thought. But then when I got there, the gratefulness that I tried to hold onto so tightly, slipped through my fingers.  Disappointingly quickly those domestic tasks, that seemed oh-so-shiny when I was too ill to do them, became dull.  Because, when I was at my most ill, I held on to a fantasy that improvement in functioning would naturally come with feeling well. But that didn’t happen. Instead, I moved up a notch from hellish to chronically cruddy.  So, when it comes down to it, I’m still sick every day; I can just do a bit more while being sick.  And I can hide it better.

These days I inhabit Nowhere Land.  I straddle the worlds of the chronically sick and The Well.  I move in two circles, in neither of which I feel I have a firm place.  To the doctors, I’m “managing a chronic illness”; I’ve gone to see the specialists who I hear may help, I’ve diligently tried their treatments and followed their protocols (most of which made me worse).  So I’m not really interesting to them now, because I’m not a success story but I’m not knocking on heaven’s door.  They’ve run out of ideas and just sort of leave me to it. I’m in Nowhere Land.

Socially, I’m a bit of a Nowhere (wo)man.  My friends with ME, the ones I made online when I was too sick for a social life and was lonely and desperate for understanding, those beautiful and courageous souls that I’ve never seen in the flesh, they’re mostly still here.  But I let them down because I’m not online as much and I miss supporting them when they need it most. I feel like my news of doing is deeply insensitive to their continued suffering, and I’ve betrayed them in having left the hellish world they still inhabit. I wonder if they feel angry when I vent and whine in our online support group about my trials which must all seem like problems they’d give their left arm to have. Little do they know, they are the precious thread of red wool that I use to wind my way back to comfort when I get lost in Nowhere Land.

Nowadays, I can also move into the world of the well.  Carrying around my knowledge of the unseen world of the chronically ill, I spend time with my in-the-flesh people. But I’m like some kind of odd expat who randomly pops in for unexpected visits.  Of those I’ve told about my illness, some have stayed and others have backed slowly away. Some I’ve backed away from too because their disinterest has hurt too much.  Those who have stayed have been patient enough to listen to my botched attempts at explaining ME in 100 words or less, and tried their best to understand its weirdness.  They’ve borne witness to my life with ME with curiosity and empathy. They’ve been repeatedly let down by my unreliability but kept coming back for more.  And they have stood patiently still while I’ve moved between my worlds. For these precious people, I’m grateful beyond words. I don’t know that I’d have done the same in their shoes.  These special people have made room for the ME in my life and put up with me changing from a mostly spirited, reliable and supportive friend, into a friend who is present with ad hoc inconsistency at best.

To the uninitiated, I’m better, as in recovered.  Because that’s generally the well person’s understanding of illness: you get sick then you get better…or you die. There’s no in between. There’s none of this living-with-it-on-and-on-every-single-day sickness.  “Gee you’re looking well” they say, and “I’m so glad you’re back on track”.  In reality I’m still an 80-year-old wolf in 43-year-old sheep’s clothing. Look more closely and you may wonder why I’m never really seen until the clock reaches pm.  At afternoon school pickup, you will notice I’m often the mum with wet hair and no makeup who shuffles to the nearest bench while the other mums stand around chatting in groups. I half listen but I’ve got little to say; partly because my one achievement of the day has been showering and getting dressed; also because to join them would mean standing up and losing what little remaining power my body has; but mostly because my brain-o-mush means I only absorb bits and pieces: I make a tit of myself by forgetting things they’ve just told me or making vague comments that trail off mid-sentence because I’ve suddenly forgotten what I was saying.

I’m the odd mum in my village; the middle-aged lady driving the nanna cart, wearing sunglasses in winter, head bobbing wearily as I trundle towards the classroom door, pale and nauseated by the darting movements and fingernails-down-blackboard noises that delighted children make when the school bell sounds. And, when he sees me, my 5-year-old chucks his backpack down in the middle of the schoolyard because he’s excruciatingly ‘‘barrassed‘ that I’m on my scooter and furious at this very public display that I’m sick again.  He knows full well it means, once home, Mum will shove Sao biscuits and jar of Vegemite on the table and stumble back to bed where he’ll visit me with a thousand bits of paper he’s coloured in and school notices to sign and stories of the big hurt on his hand from the awesome tricks he did on the monkey bars. And all the time my brain is blank and nothing’s going in, nada, zilch. And, because my body can’t seem to produce energy for ANYTHING, I have to remind myself to move my face into a smile, and let out uh-huhs and oh dears and kiss his hurt and make futile attempts at focusing my eyes on his drawing of Batman fighting the alien dude.

Before he leaves my bed, he reaches into his pocket and pulls out another little thing he’s collected today. He’s been doing this since I first became ill, before he was old enough to speak the words of what was happening to his mother.

He places a little white stone on top of a mounting collection of feathers and rocks and shells on my bedside table, precious gifts from him to me. “Thereyar Mummy, to help you get better”. If only, if only, my darling.

Over the years, I’ve started to run out of words to explain ME.  My brain scrambles in my efforts to describe its convoluted-ness in simple terms.  Also, telling the story of ME and my experience with it makes me feel vulnerable. It’s like peeling a bandaid off a wound that hasn’t healed and waiting for peoples’ reactions: some recoil and quickly er-hum their way out of the conversation; others start to get that suspicious look of disbelief I’ve seen too many times and which never fails to hurt to the core; many show great caring which can either make me weep with embarrassed relief or go on to gush in a tidal wave of oversharing.   For those curious enough to ask more, there is, frustratingly, never a straight-forward answer to the questions that follow: What causes it? What’s the treatment? What’s your prognosis? Why haven’t I heard of ME, oh CFS yes I’ve heard of that, that’s that chronic fatigue thing? Do you know about XYZ [insert helpful suggestion of treatment or name of alternative health practitioner here]? You’re looking good, when can you go back to work/ use your spare time to paint/help out at the school fete/come jogging with me?

At times, I’ve wanted people to know about the parts of my life they don’t see. I’ve explained that when they don’t see me for long stretches it’s because I’m more ill and horizontally resting so that I can be well enough to do things again. Hoping not to sound like a whinger, I’ve provided a few details of the limited routine I follow to tread the fine line between semi-functional and not; how a “pretty good” week is still one with 2-3 days spent in bed; and how I live every day with pain and nausea and trouble being upright. They listen and nod and say kind things, but I can see they can’t really fathom how the person in front of them who looks alright has any kind of illness at all.  And I understand all this, really I do, because that would have been me a few years ago.  Listening and nodding, but inside going Huh?

So that’s where I am. Sitting (well, mostly lying) in Nowhere Land:  the world of moderate ME.  In and out of the world of the well and the sick.  Making all my nowhere plans; ideas that so often don’t come to fruition because ME has its own agenda.

But how does that song end again?

Nowhere Man, don’t worryTake your time,(1)

And, I’m reminded how very blessed I am.  I have my people, the souls behind the screen and in the flesh, the ones who buoy me, teach me, and love me.  And, even in my Nowhere Land, my people find me, and they meet me where I am.

…and Climb

Ko te pae tawhiti whaia kia tata.Ko te(1)

I am engaged in reframing identity post morbidity.  That’s the technical term for when you have to accept your sick self after a diagnosis.  Getting used to the new you.  I feel like illness has been gradually wrapping me up in a chrysalis, restricting my movement, constricting my experiences. But who I am is still there.

I think of that girl who defined herself by the things she did.

She danced, drank with abandon to usher in her dutch courage. She enjoyed philosophical discussions, standing around with other smokers, blowing out puffs of smoke with a thoughtful squint to her eyes. She was a good-times-girl with a tendency to sudden sadness, a seeker of fun and a girl on the run.  A subversive rebel. A smarty pants with long blonde hair and an attitude.

She did other things too.  Travelled, worked, studied, excelled.

I feel conceited writing that, even in the third person. But it is true, regardless of how awkward it feels to write it.
And all of the things I did were proof to me of who I was, what I stood for, my standards, my skills, my talents, my way of doing things. So what to do now?  Now that I don’t do much of anything? Who am I now?  Am I really still me, wrapped up in a chrysalis? Am I really constrained from being me?  Does it change the sort of person I am?

No.

Only the way I express it.  Does it change my goals?  Well, yes.  It makes them further away. But it makes them simpler too.

These days, I can’t give myself over to latin rhythms anymore, spinning round the dance floor, part of an energy exchange, lost in the force of motion, moved by the music and the slightest touch of my partners hand. How do you dance without smiling? How do you smile, without dancing? I felt such freedom in that movement, my hair swinging out behind me, weightless and turning and pulling back into the hold. Such a beautiful feeling. Rhythm and connection.  Music. I can still  listen to that music and touch on the sweet-spot. My memories of dance.  I can close my eyes and feel it again.  The air, moving against my hair, my obliques, twisting and turning.  My calves, taut and quick. Me, in heels, skirts and sexy strappy tops.  The warmth of bodies moving beside mine. The slip of the dance floor under my feet. Can I use those memories to help me find myself again?  Is it finding these words that takes me there?

Nor can I indulge in my professional passion of teaching.  Preparing my classroom for the first day of school… the smell of brand new stationery and the energy of potential; just waiting to spring from the air into works of art, words of heart, thoughts and epiphanies.  Kids finding their moment of understanding, seeing the possibilities and running with it.  I can still look through those photos of my first classroom, my first ‘kids’.  See the pock marked desks, the spelling lists and the self portraits, framed against a bright blue cardboard sky.  The book boxes, chair bags.  The smell of pencil shavings and old bananas, smelly shoes and whiteboard cleaner.  The joy of my own desk, my own resources, everything to hand and in it’s place. The clear eyed faces I would know so well, gazing up at me, waiting to begin.  Can I use the memory of teaching to help me learn something new about myself?  Learning requires you to know that you don’t know it all yet, to question, to risk new ideas.

I can’t do things like I used to.  It’s time for a new idea.

I am the person who did those things.  That dancer; who let herself be moved by the rhythm.  So I know how to bend and sway.  How to roll with the ebbs and flows. I am the teacher; I know how to think, communicate, to ask questions.
My goals have not gone away, I just need to do things differently, find new ways to travel through time.  I am flexible, I can work it out. Word it out. I am, who I am.

The chrysalis is falling away.  I needed it to hold me tight so I could grow my wings for flight.  Not dancing, not teaching, not doing. But winging my way into a new kind of being.

Ko te pae tawhiti whaia kia tata.
Ko te pae tata whakamaua kia tina -Tihei Mauriora

How are you?

If I met you, I’d smile.  
Maybe you’d ask me how I am.  And my smile might wobble a little.  It’s not a question I can easily answer.  I don’t want to lie, but if I told you the truth of how I am, you might do that little sliding sideways step and make a mental note not to get stuck next to me next time. So I’d say
“…fine, thanks.  How are YOU?” and we would talk about that instead.

But I think it might be time to break out the real answer.
“I’m not doing so well”.  Thanks for asking!

My name is Rachel and I have a neurological disorder that is a dysfunction of the autonomic nervous system.  That means, all the functions of the body that are automatic.  Breathing, Heart-beating, Blood Pressure, Temperature regulation, Digestion, Bladder and Bowel functions.  Just a few of the things that make our bodies efficient places to live.  In my body, all of them are affected.  I have a pacemaker to assist my heart and medications to help with the rest.  They are the ambulance at the bottom of my cliff. But when you look at me, you can’t see how I am falling.  They call my illness an ‘Invisible Illness’.  It isn’t easily apparent. On my worst days, I’m in the emergency department, or here, in my bed.  Dealing with all manner of broken body problems. I might be tapping away on my keyboard. Connecting with the world in the best way I can, out of sight.  But on my good days, when I am visible, I might be beside you, chatting about how you are, and smiling. Looking fine.

There is no cure for Dysautonomia.  My doctors haven’t found a cause, but for some, a cause may be found and a treatment begin.  For the majority of us, ‘treatment’ means symptom management. A regime of medications and interventions; it is a ride on a runaway roller coaster in an abandoned theme park.  Frightening, unpredictable, overwhelming.  Autonomic dysfunction like mine is more commonly seen in late stage Parkinson’s or Multiple Sclerosis, but without a primary cause it is rare. There are few of us in Australia and New Zealand, but we are resourceful!  We have found each other on the internet and we work together to find information, resources and hope. I cannot imagine how it must have been for people with rare diseases before the internet.  It makes me want to cry imagining how very isolated they must have been.  I am so grateful for my finger tapping friends all over the world.  Shouting a two dimensional hello into the ether.  Arms reaching far across the digital divide with comfort and solidarity.

So, How am I?  Really?
So frustrated, so scared.  See, I have two kids and they are still so little.  Zed is six and Bee is nine.  I linger at bed times, holding them in my arms, always for just a bit longer.  My lips against the hair on the tippy top of a warm head, my cheeks pressed up against the moist stamp of little hands. My thoughts, always on what the future may hold for them.  My heart in my mouth and my own hands grasping at the time slipping right through them.  I want to be the mum who walks beside her grown kids, head up high, laughing and joking. Not the incontinent invalid, too spent and struggling to keep pace with the conversation.

I’m heartbroken, so sorry.  See, I have this husband.  He’s the best man I have ever met, and I got to marry him.  He’s tall, and lovely and practical and smart.  When we argue, we make up.  When we struggle, we push through.  When we love, well, there is no song, no poem, no flower that could help you understand.  It’s friendship to the power of two.  It’s trust in the face of despair. It’s warm and good. It took me so long to find him and then, Dysautonomia found me.  How is that fair?  It breaks my heart that he has to live my diagnosis with me.  My husband; my friend.  A commitment in sickness, but where is the health? I want to be the wife he can run away with, when our child-rearing is done. The wife he can play with; he’ll chase and I’ll run.

I’m lost, so empty.  See, I had a great career.  I was a teacher, and I loved it.  I worked with kids who had exceptional ability.  My last job was teaching a small group of gifted child writers. And I still think about every child I have ever taught.  I still yearn for a classroom of my own and a chance to engage in those exchanges when learning is the light illuminating our world. Where sparks fly and inspirations blaze.  Where questions and commentary, connections and community fill me with hope for the future of our world.  I miss being their teacher.  I miss seeing them shine and watching their possibilities unfold.  I want to be the one lighting the bonfire, I have so much tinder for the fire. But now, I just teach myself. Patience.  Every day.  I grit my teeth and get through the next thing, I swallow my shame about what my body won’t do.

But I’m really glad you asked how I am.  Because even though I am all of those things I write about above… I am also amazed, so genuinely gobsmacked by this life. I have lost so many of the things that meant so much to me.  I had very specific plans for my life, for all the things that I thought I should achieve.  But I am finding out something quite extraordinary.
I actually have, SO much.

I have everything that matters.  

I have love.  I have a purpose.  I have words (and I intend to use them!)  Being sick is not a picnic.  But it is a bit of a fast track to finding your true self.  And in spite of everything, I am back to the basics of Rach. For the first time in my forty years of life, I like me. I have so much more insight and empathy than I could ever have had before.  I am writing and connecting.  I am meeting ‘my people’, from right where I am.  In the comfortable discomfort of the present situation.  From my bed.  From a place of real true, me. I feel all these sadnesses, all the fear and loss and frustration.  But I also feel a peculiar kind of free. 
I feel like I have found: me.

I turn and I smile, at you.

Because, actually, I am fine, thanks.
But truly, how are you?

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