The Dealer

picture of a hand holding a pen, hovering over a form (paperwork) and the words "and what do you do?" overlaid.

“And… what do you do?”  The Financial Planner was filling in the forms. We have been thinking it is time to get serious about our finances for years and now we finally are. The guy had already discussed my husband’s occupation.  Much head nodding and respect. And now it was my turn. The field for my occupation was empty, his pen hovering over the space.  I hesitated, and he filled the awkward pause with a mumble about how being a full time housewife is job in itself. I hadn’t said anything yet. I never use that term to explain what I do. Never have. I’ve always put my profession in the box.  Wife is my marital moniker.  Not my profession.

My profession has just slipped out of my grasp.
Teaching. Being sick, I haven’t been able to do the required number of hours in the classroom to maintain my teacher registration. So now, I can’t even say “I’m a teacher”.  I know I am bleating, but it is one of those owies that still stings.  I have the qualifications, the experience, the boxes of treasured thank you notes from my students, a cupboard in the garage that holds the last vestiges of my classroom souvenirs.  According to our registration board, it is not possible to teach well if you have been out of the classroom for as long as I have.  Except that I never really left it. I’ve been relieving and doing part time roles wherever I can during that time.  It’s just not ‘enough’.  I would need to do spend thousands of dollars I don’t have to re-train; if I want to use that degree of mine ever again. Relief teaching was a flexible and chronic-illness-friendly way, for me to contribute to to our income and to society. I worked when I could. It is such a shame that this is now out of my reach.  I miss it.

I looked at that financial planner and searched my brain for something he could put in his box. I explained that I can’t teach at present, but I do write.  That my income is small, and comes from bits of writing I do for various places and the board from our two home-stay students. I didn’t tell him that I am a full time housewife because I am not. If I were, I might not have needed to brush the crumbs away from the table before he sat down with his folders, papers and questions.

He wrote ‘housewife’.  I imagined he thought ‘…and not a very good one’.

I wondered why that question and his answer made me feel so bristly; why I feel shame about not being able to list my profession. I thought about all the lofty housewifely achievements I don’t manage and felt guilty about the state of my home.  I felt that sinkish feeling you get, watching the well world go about it’s business and wishing you had the words to explain just how much hard work it is, dealing with being sick. Dealing with being sick and all the expectations from self and others. Dealing with being sick and losing your sense of purpose, your profession, your image, your income, the defining characteristics of your well self.

The things that make you feel good about yourself.  It can leave you feeling a bit shit.

What do I do?

I deal.
Put Dealer in that box, Mister.

The Dealer, dealer, deal, deal with, make a deal, deal with it.  Dealer.  The Dealer.

Sarah Bowen: So, I must be fine, right?

Today on the blog Sarah Bowen is talking about Scoliosis, surgery and chronic pain. When I started up the ‘Meet my Peeps’ series earlier this year, to broaden the sharing and to introduce you to some of my favourite people, I knew that you would like them as much as I do. Many of my peeps, like me, have invisible illness or disability and all have chronic conditions.  Things that just don’t go away.  All of them are awesome people with relatable stories.

A lot of my ‘peeps’ are actually people I have never met in person.  We meet online, in the patient forums, on portals related to chronic illness and also, in my bloggers group.  Sarah is a fellow Pipster (that’s what we call the alumni from the Blog With Pip course) which is how we became blogging friends.  She has a gorgeous blog called The Routine Queen where she writes about all aspects of being a mum and something dear to her heart, organisation. I first bonded with Sarah when she wrote about the challenges of being an introverted Mumma.  You can read her post on that, here.  Then we got talking and I discovered that Sarah too, has an invisible, chronic condition.  She writes here about living beneath the radar.

Do you suffer from chronic pain, too?  Come and say hi!  Here’s Sarah:

Many people are surprised to hear that I

Seven years ago, when I was twenty five years old I had major back surgery for scoliosis, a term used to describe curvature of the spine. The decision to have the surgery was a big one. I was told if I left my back as it was it would continue to get worse and could end up causing major health problems (think squashed organs and a wheelchair). But the real deciding factor for me was that the severity of the curve in my spine would make it difficult to carry and naturally birth a baby, something which I was looking forward to in the not so distant future. So the decision was made to have the surgery. Little did I know how much it would change my life.

Recovering from the surgery was intense. Almost three weeks in hospital and three months in a full back brace. At the beginning I couldn’t walk more than a few steps assisted before I was exhausted. Sitting for longer than a minute would leave me in tears. I couldn’t brush my hair, have a shower or go to the toilet unassisted. It was hell. I was told that after six months I would be ‘back to normal’ but its six years on and I’m still waiting.

Many people are surprised to hear that I(1)

There are lots of questions surrounding the surgery and my recovery. For example, I was told a small portion of my rib would be taken to gain access and help ‘fuse’ my spine together. I was told it would grow back (as the front of your ribs are actually cartilage not bone, they can regenerate). What actually happened was three of my ribs were removed and they never grew back.  There was some other complications and lasting nerve damage. I am in pain every single day. Obviously not as intense as the first few months following surgery, but still, the pain is there.

I spent years looking for the answers. Why did this happen? What was causing the pain? How could I make it stop? I went to chiros, physios and osteos. I tried different forms of exercise and natural therapies. Nothing worked. After many hard days I had to face a hard realisation. This was how my body was now; this was how it was going to be.

Many people are surprised to hear that I am in constant pain. Because I rarely talk about it people assume I’m fine. I manage to live a normal life, I work, and I participate in normal activities so I must be fine right? I think for people that suffer from chronic pain there is a certain point where you just learn to live with it, your really don’t have any other choice. And so you get on with life. You stop talking about it because you’re sick of talking about it and you’re sure everyone is sick of hearing about it!

Since my surgery I have become a Mum. I have a three year old boy. When I was pregnant I was almost pain free (must’ve been those hormones, someone please learn to bottle that stuff!) but it quickly returned after giving birth. I’ve had to learn to manage. I could never carry my son on the right side of my body, it’s not easy for me to bend down and pick things up from the floor (not fun when you have toddler!) And I have to grit my teeth when people give me a hug because it really hurts! There are days when I’d love to just lie in bed with a heat pack on my back but of course when you’re a Mum you just can’t do that!

Cold weather is a killer, my body kind of just seizes up. Needless to say I’m not loving winter in Melbourne at the moment! I have days when I have a sook to my hubby about it, I might mention my back is particularly sore, on those days the pain is probably more of a 7 or 8 than its usual 5 out of 10. But most of the time I remain silent because I figure there’s nothing that can be done. I try not to think about it, I try to focus on other things and keep busy, that’s my way of coping.

Another thing that helps me cope is knowing I’m not alone. So when I came across Rach’s blog I was inspired to send her an email, I just needed to tell her ‘I get it’. I can really relate to so much of what Rach shares here on her blog. So I was extremely honoured when she asked me to share my story with her readers. And now that I’m here in this space I’d love to hear from you.

If you live with chronic pain how do you deal with it?

What things help you cope?

What have you discovered that helps you both mentally and physically?

Best I Can

How do you navigate a healthy marriage when one of you is long-term sick?

I am so fortunate to have a man whose commitment to our marriage equals my own. But that isn’t just a lucky thing, there are never any guarantees that relationships will produce equal commitment. When we found each other, we were careful.  We talked explicitly about this issue.  For us, our previous marriages to others provided the common ground we needed for common understandings. We credit our equal commitment to having first hand understandings of the opposite.  We both had more commitment than our previous spouses.  Both of our marriages ended because the other half didn’t feel the same way about commitment.

So when we met, our shared language was all about what commitment really meant. To us. Did we share the same ideas as each other?  We knew we couldn’t proceed any other way.  And we found we did. But it was touch and go as to whether we would even get married.  It had seemed to us that marriage is nothing to do with the paperwork.  Broken hearts and other people’s choices had shown us just how easily you can dissolve that legal agreement.  For us, marriage was not to do with the paper at all.  Our marriage began when we moved in together.  It was sealed when our baby girl was born, and ratified when our son arrived.   So when sickness moved in, we were already pulling together; equally yoked to the beautiful burden of being a family.

My hubster is an honest fella.  He told me once that if he had known what was ahead of us, he wouldn’t have embarked on the relationship. In truth, if I had known I wouldn’t have wanted him to, either. Who would ever choose it? Who would ever want it for their partner?  For themselves?  Neither of us.  But now, he often reassures me that he’s staying. He chooses to stay committed to me, to our family. He says, in his quiet way, “I’m not going anywhere”.  And I know that he means it.  And I have agonised about whether or not I should leave him. Set him free and let him have a different life. He tells me he would be miserable without me and I know that it is mutual.  We’re a set now. I can’t pull my weight physically, financially and sometimes not even emotionally. But when it comes to commitment, we are equal. And that is the forward momentum our marriage needs.

A few years ago when we were beginning to struggle with my lessening ability to do things around the place, we had an argument. It was a big blow up.  A big release. And I realised that we needed to make another commitment to each other, so that we would know at all times we could rely on each other. We promised that we would always do our best. That is a different thing for both of us, but equal effort.  If there was something I could do, I would do it. If there was anything that was within my scope of ability, I would do it. And I have. He has too. It’s actually a brilliant rule for life.  I think, before we made that promise, he was afraid that I would sink into a chronic illness malaise and do less and less and less.  Not from lack of ability, but from lack of will.

what do you see inside my heart_i’m good

And so that is how we navigate marriage with one of us sick. We both commit equally to the marriage and we both commit equally to doing everything we can, our best, to make it work.

How do you manage your relationship in the context of your illness?
I’d love to hear your thoughts.
Have a listen to this stunning song by Priscilla Ahn.  Oh, that voice!

The Fix Fixation

So once when I was teaching, a mother came to talk to me about her son. He was a plucky little kid with developmental delays.  He was popular in the playground and perplexed in the classroom. We’d been working hard on building his number knowledge, which was minimal when he first arrived in my class, aged 9.  He was just beginning to feel comfortable using numbers up to twenty; early stage numeracy.  Progress was steady, but laborious. When the mother arrived for our meeting, she looked through his maths work and launched:  “Where are the multiplication tables?”  she demanded,  “When I was his age, we were doing multiplications!   He needs to be doing multiplications!”.  It continued, in variations for the whole meeting. She was fixated on the idea that regardless of what he needed right now, what he was able to understand, what was appropriate for his stage of learning, multiplication was the fix because that is what she had done at his age.  I couldn’t get her to see the realities of her son’s situation. If we leapt into times tables before he understood his numbers he would never have a foundation to support later learning.  He’d have huge gaps in his number knowledge.  Gaps he would fall into, over and over as he progressed through school, risking falling further and further behind.  What she wanted for him was a solution. What he needed was her patience, and time.

fixating on the fix

We are a generation of solution-oriented people, aren’t we?  Got a problem?  Well, let’s solve it.  We’ll throw all our resources at it.  We’ll research.  We’ll leave no stone unturned. Surely there will be a way to fix it.  Because if it is broken, that’s very far from what it should be.  We’ll turn the problem over until we understand it from every angle.  Then we will stitch together some sort of plan. We’ll make it right.  Fix it. But what if you can’t? Is there room in our minds to accept a problem that has no solution?

Having a chronic illness that is poorly understood by most doctors has been a problem for me. I’ve been fighting now for a long time to find some answers, a treatment pathway. To find a way out of my difficulties.  I thought I was getting somewhere… and last week I discovered I am no further ahead than I was four years ago.  Is it okay now to give up trying to find a way?

Because that is what I am doing. I am so tired of scouring the horizon for information that might help. For the right solution. I have a diagnosis that I know a lot about, but I am no doctor. They don’t know a lot about it because they so rarely see people like me.  I am so tired of trying to strain to listen for the tempo playing in the minds of clever doctors. I am so tired of reading up and keeping abreast and willing a solution into being. I am so tired of carrying the responsibility of my own healthcare when I don’t have the qualifications or the brain power to do that. So I am putting it down.

Don’t be disappointed with me.  If you are one of those people who have messaged me and urged me on, thank you so much. If you are one of the people who hope that my progress will help your own, I apologise.  Right now I can’t refuel the engine.  I’m all out of determination.  I am going to use the little oomph I have left on smaller things. Hopefully, someone else somewhere will make some progress.  Here’s the baton, if you want it. Maybe some more research will provide the perfect conditions for action.  The sort of conditions that make doctors feel they can make decisions with confidence.  A double blind study somewhere that delivers the big a-ha. A mighty health crash that delivers data up the wazoo.

I never thought I would reach a point where passivity seems like the only choice left. It doesn’t mean I accept my illness. I never will.  But it does mean that I don’t believe there is a damn thing I can do that I haven’t already done. I think I finally accept that this system; all the difficult realities of medicine, do not work in my favour.  And I am going to stop trying to shift this immovable mountain.

If I had some objective data that made it all really clear, it would be easier. If I fell in a different percentage of Dysautonomia sufferers. If I lived in a different country, if I had a particular kind of insurance, if I could see a specific doctor in some other more populated country…. and on it goes.  I am just sick of it all.  Sick of being sick and yet having to fight for help. Why is it that in some cases, our medical systems require so much of the patient, so much more than they can realistically manage?

Also, looking at my current situation as objectively as I can, I do see the problem.  I’ve been fixating on IVIG (intravenous immunoglobulin) as the holy grail for some years now.  I thought, if my case was auto-immune and IVIG could address the rogue antibody action, I could get better. It seemed so logical.  It’s why responding so well to immune suppression filled me with so much hope! I wrongly thought it would help my case for immune modulation. IVIG itself; a blood product rather than a medication, a little bottle full of the antibodies of a thousand donors, seemed like it held the answers for me. Maybe it does. But I’m not likely to ever find out.

Because you cannot just ask for IVIG. It is in short supply worldwide. And it comes with associated risks which must be carefully weighed for each patient.   Here in New Zealand, the approval process is specific. My case would need to come before an approval board who want to see hard data that explains why I should have such an expensive and precious medical resource.  I am not eligible under their criteria. If any patient could have IVIG, just because they have a picture of systemic dysfunction, there would be a run on the blood bank.  No board could approve my case as it stands because of what that would mean for our supply. I get that. And I hate that.  What I would need is a strong letter of support from a neurologist who understands autonomic disorders.  I don’t have one of those.  And some blood screens to come up with a positive antibody titer. Mine is seronegative.  And a series of results from all the tests I have had over the last six months that give a compelling picture.  Mine do not.

So there really is no option for me. Giving up my fixation on IVIG as the potential treatment for fixing me is really all I can do for my own sanity.  I have to let go of it.  I have to pull myself back into this battered old snail shell and wait.  One day, something might happen out there that will help me. In the meantime, I will simply carry on. I’ll do what snails do during a drought.  Batten the hatches. Wait it out. I’ll take it as it comes, whatever that might be.  I will hope that my brief emergence into the sunlight during immuno-suppression might leave me with a soul tan. That my short time back in the race might leave me with some mental momentum.

So I’ll be in my shell for a bit. Don’t be mad with me.  Don’t feel bad for me.
And don’t be sad either, I’m doing enough of all that for all of us.  I’ll be trying to think of that Mum who so desperately wanted a fix for her boy.  There was one, it just took time, and it wasn’t the thing she imagined he needed most of all.

Just patience, and time.

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

 

 

Dirty Word

those who feelthe breath of sadnesssit

I’ve been around the traps a bit and it hasn’t failed to escape me that there are some words that will always draw a gasp of horror from people steeped in political correctness.  We get very hot under the collar about words that ‘otherise’ us.  Words that convey a position of lesser.  Words that are limiting rather than edifying.  One of those words is barely tolerated by most in the disability and chronic illness crowd.   I think it is much maligned and I don’t want us to lose it. Although many might disagree, in my opinion, it’s a wonderful word: sympathy.

I think I understand why sympathy has become such a dirty word. I think it is because we equate the word with pity, which is so unempowering.  But that is not all that sympathy is or can be. And I want to talk about that because in reality, empathy (the somehow more legitimate big sister of sympathy) is not always possible for people to find. Sometimes, empathy is asking more of people than I think is realistic.  It would fix all the world’s problems if we could all have empathy for one another based solely on our shared realities of the human condition.  But that seems outside of the reach of so many.  Limited life experiences, moralities, ethics, different values.  Not all of us can empathise.
Yet sympathy in the form of pity is not useful or welcome. There are forms of sympathy, however, that deserve a break.

So let’s look at that dirty little word:

sympathy |ˈsɪmpəθi| noun (pl.sympathies) [ mass noun ] 1 feelings of pity and sorrow for someone else's misfortune: they had great sympathy for the flood victims. • (one's sympathies) formal expression of such feelings; condolences: all Tony's friends joined in sending their sympathies to his widow Jean. 2 understanding between people; common feeling: the special sympathy between the two boys was obvious to all. • (sympathies) support in the form of shared feelings or opinions: his sympathies lay with his constituents. • agreement with or approval of an opinion or aim; a favourable attitude: I have some sympathy for this view. • (in sympathy) relating harmoniously to something else; in keeping: repairs had to be in sympathy with the original structure. 3 the state or fact of responding in a way similar or corresponding to an action elsewhere: the magnetic field oscillates in sympathy. ORIGIN late 16th cent. (in sense 3): via Latin from Greek sumpatheia, from sumpathēs, from sun- ‘with’ + pathos ‘feeling’.

Sympathy For

So others might be feeling pity and sorrow for your situation. So what?  There will always be people who consider themselves to be more fortunate than you regardless of individual circumstances.  And since when could we control the feelings of others? Never. People will feel what they feel and it is always more about their lens than anything else, they are making sense of their world.  That is the nature of the human condition.

I grew up in a third world country and it was natural for me, with my Western Cultural Lens, to compare my privileged existence with people living in poverty. I had enormous sympathy for the children in the squatter settlement behind my home. But saying “Poor you!  Look at that malnourished belly!  I don’t know how you can live in this squalor!” …would have said a lot more about me than about them. Would it have helped them to know I felt sorry for them?  No. It would simply have been an offloading of my own discomfort. Living in poverty does not necessarily mean that all aspects of those children’s lives were impoverished, but we find it hard to see that from our imperialistic point of view. Pity is a comparison to examine; think about, keep to yourself.  I don’t feel the same way about sorrow.

When people express pity to the person they are comparing themselves to, it is a redundant, personal statement.  There are a plethora of awful videos going around the internet at the moment, where young people are showcasing their generosity to homeless people. It makes me sick. Being generous to homeless people does not make me sick, but videoing it and seeking adulation for that act is so self-serving and the very opposite to generous. Not to mention that they have ‘used’ people for their own fame. I doubt if they returned to that person.  So I guess what I am saying, is that having sympathy for a person is a natural response. But voicing pity towards them is obnoxious.  You might be rolling your eyes right now and thinking ‘that’s a bit precious, how am I supposed to express sympathy if it is not by saying it?’

Sympathy With

Having sympathy with something (as opposed to for someone) is sharing an opinion or feeling about an issue.  In the manner of, I have some sympathy with that person’s stance.  It’s where the word ‘sympatico’ comes from.  It’s beautiful.  Thinking along the same lines as someone else produces such solidarity. It is the life-force behind democracy.  The collective feeling of many, or just two. It’s falling in step with someone else’s mind and beating out the rhythm in perfect cohesion. I love sympatico. It’s a big reason why for me, sympathy is not a dirty word.  To have sympathy with an idea is the beginning of social change or the turn of a conversation or the joy of friendship.  It’s how an idea gains traction.  It’s an indirect way to develop sympathy for a person, by becoming engaged in the issues that effect them and the thinking that moves them.

That’s how.

Sympathy In

Lately I’ve been listening to a band I had never heard before.  It was introduced to me by a friend of mine I have met through the Be.Accessible Leadership Programme. Since he lent me the CD, it’s been playing in my car every time I’m in it. There are lots of songs from the CD that are growing on me, but one in particular that I loved from the outset.  The band is James and the album is Gold Mother.  The song is ‘Sit Down’ and I’ve pasted the lyrics below.  I record them here because this song, to me, embodies all the things about sympathy that I don’t think we should ever let slip from the vernacular of our patient groups, our social gatherings, our together times.  I sat next to that friend at the Zoo the other day, feeling an array of things.  I admire him, I feel for him, I think that in some matters I understand him. I sat there, in the kind of freedom that you experience when you are with someone who has travelled terrain a bit like your own. There are things that don’t need explaining. That is a rare thing, and one of the most perfect expressions of sympathy; the kind you never need express.

So have a read, have a listen.

And tell me… what do you think of these things?

How do you feel about sympathy?

Sit Down. 
By James.

I’ll sing myself to sleep
A song from the darkest hour
Secrets I can’t keep
Inside of the day
Swing from high to deep
Extremes of sweet and sour
Hope that God exists
I hope, I pray

Drawn by the undertow
My life is out of control
I believe this wave will bear my weight
So let it flow

Oh, sit down
Sit down next to me
Sit down, down, down, down, down
In sympathy

Now I’m relieved to hear
That you’ve been to some far out places
It’s hard to carry on
When you feel all alone
Now I’ve swung back down again
It’s worse than it was before
If I hadn’t seen such riches
I could live with being poor

Oh, sit down
Sit down next to me
Sit down, down, down, down, down
In sympathy

Those who feel the breath of sadness
Sit down next to me
Those who find they’re touched by madness
Sit down next to me
Those who find themselves ridiculous
Sit down next to me
Love, in fear, in hate, in tears

Down
Down
Oh, sit down

Sit down next to me
Sit down, down, down, down, down
In sympathy

Dear Kellie,

Dear Kellie

I like to think that you can read this from wherever you are. I like to think that because it is comforting to me. And comfort, when it comes to the absence of you, is scarce. So I take my threads of hope in there being a hereafter and I try to weave them into something tangible.  You, looking over my shoulder from another dimension.  Reading about the shock wave of your departure. Knowing that you are missed as much today as this day a year ago.

Truth is Kel, there really isn’t any way of reconciling your departure. It was sudden.  You were such a long way from home… you were meant to come back to us. You are meant to be here. I wish you were.

I spoke with you on Facebook messenger, we talked about the kids, your man, how it was all going.  You said how tired your were and something awful gripped me.  Through all the difficulties to that point you had barely even mentioned feeling low, even though the trials were many.  You were in isolation, and glad for the opportunity to rest.  Then it went quiet. I hoped then that you were getting lots of rest, that you would bounce back onto my screen and tell me how the weekend had been for you. 
But then, I saw a message in our patient group.  Someone said what a terrible shock it was to hear about your passing. I reeled. I messaged you. Kellie?  Did you hear me?  Did my thoughts catch in your wake and follow you to where you are?

I wrote to you on messenger for a while after I knew for sure.  Not wanting to believe you were truly gone. I’d been your online friend since you messaged me to ask if I would help with your blog and it was a fast-track friendship.  I hadn’t known you for very long, but I suspect you had a gift for making everyone feel like your close friend.  Warm, funny, irrepressible. That’s how I found you. I enjoyed our friendship and I looked forward to the futures we imagined, cured and cackling with a glass of wine.  Trans-tasman trips and girlie weekends. We joked about an arranged marriage for our firstborns, the way Mums like us can. Mums who wish they really could make the world do their bidding, keep their kids happy, safeguard the future. Mums who knew we couldn’t do any such thing.

I wish I knew how your family are. But I never joined your personal Facebook page.  We were always in contact via messenger or email and I don’t know how I didn’t think to Facebook friend request you.  I wish I had. I would have loved to have seen all the beautiful things your friends have said about you. To share with them this difficult date, a year since you left us. If any of them see this, I hope they know they are not the only ones wishing you were here.  Sometimes it helps to know there are others keeping the memories alive too; here we are Kel, a groundswell of grief. Your people.

I miss you Kellie. I miss your profile picture popping up. I miss the laughter that you brought me even on my sickest days.  Sometimes I would laugh until the tears squeezed out the corners of my eyes.  We were cyber friends, digital buddies, pen-pals of the keyboard kind.  When my days were awful, you were a bright spot. You funny, irreverent, girl.  I am cast adrift by my grief at your loss, and I knew you for such a short time. I cannot begin to comprehend how your Mum, your Aunty, your best friend are getting on. Your man, your eloquent lad, your beautiful girl. All the people closest to you.

Today, the world has travelled once around the sun since your heart stopped beating. For Mark and Luc and Ash, the rest of your beloved family, your friends; every laborious step of that year has been heavy with longing for you. There will be a silvery path of salt water in the wake of Earth’s orbit, because Kellie, we cannot help but measure our grief for you in tears and time. The earth will keep on traversing that path, and every year as it passes this dreadful date, we will commemorate you. All of the special memories that each of us has. All of the beauty, and liveliness that was you. We will put down our work, our play, our every-day, and remember the way our own worlds stopped the moment we heard about you. The incomprehensible news that you were gone from us. Around the wells of sadness that opened in our hearts, we will ring wreaths of remembering.

If my hopes are real, and somewhere just beyond, your soul is living on; know that we are remembering you.  Know that you mattered to us.  Know that everything you did and said and loved and created left an indelible print in this world.  You’ll be up there wearing some gorgeous jewelled floaty kaftan. Raising a glass with some new friends and old.  Rarking it up in celestial style. We miss you Kel.

xxx

Rach

Begat

I first came across the word ‘begat’ when I was a little girl.  Sitting through endless church services and looking for distraction, I would pore through my bible for words I didn’t know. In the Old Testament there are comprehensive family histories.  They list only the sons. But of course. Surely that isn’t where my feminism took root (or is it?).  They went on in variations like this:

And Canaan begat Sidon, his first begotten son, and Heth, and…

It’s not really a term we use anymore, but it is a useful word. The next time I heard the word begat (or a present tense version of it) was when I was a new Mum.  The plunket nurse was talking about baby’s routine.  She explained that “sleep begets sleep”.  The more sleep babies have, the more they want. And how the less they get the more and more wakeful, and therefore, harder to settle.  So I set about creating a better sleep routine.

And today, I added a new context to the word begat.   (Rude word warnings…)

Crap begets crap.

And so it was, that Crap begat Crap who

You know what I mean.  It never rains but it pours. Just when you think ‘surely nothing else can go wrong, I’ve had all the bad luck a person should get’ …a bird poops on your head, you jam your favourite scarf in the car door and rip a big hole in it, you stub your toe and miss a phone call from the radio station that would have won you a trip to Paris.

No amount of positivity works. Nope. Deep breathing is useless. There is nothing you can do but surrender to the crapfest and hope that somewhere down the line, the begetting will run out. And as my friend said to me this morning, it is okay to say “why me!?” sometimes.  I agree, but it is not easy when the kids are with me, to rail against the begetting of bad times. I’ve been trying to keep the self pity to my private moments.  The anger and the grumps. I’ve been trying to fake making it, so that the Universe might be tricked into laying off on the lessons for a while.  I am sick of learning lessons.

Universe? Take your zen-opportunities and go jump. Take your deeper meanings, your soul education, your wisdom bringing life experience.  I don’t want any of it. I’d rather life was easy and I could be shallow, thanks.

My mother-in-law is sick, she has advanced Parkinson’s.  My father-in-law is sick, we’re waiting to hear results from his recent tests to see if he’ll be having surgery or radiation therapy, or both. My brother just phoned to say something’s up with his liver and kidneys. And I spent this morning at a pre-admit clinic for the surgery I will have in August to remove pre-cancerous cells from my cervix.  It’s not a huge thing, but it is one thing too many.

I had to be there for 9am, so we were up and out of the house by 7.30 this morning, I had to first drop off my daughter and then my son both to the homes of two very helpful friends. And when I hopped back into my car to go to the hospital, it would not start. The lights were on, but nobody was home.  Glancing at the clock I realised that if I called for roadside assistance, I’d miss my clinic appointment.  I screamed then, in my car.  Let out a tiny bit of the anger that has been swirling around in my head. And I called a cab. After my meeting with the anaesthetist and the admissions nurse, an ECG and some bloods, I caught a cab back to my car. The bloody thing started first go.

See?  Bad times beget bad times.  I am sure my car wouldn’t start earlier, simply because I needed it to.  All this crappy minutae, on top of all the other stuff gets me down. My steroid trial is over and I feel myself sinking back into the quagmire, perhaps even more so after my immunologist yesterday made it pretty clear there was no way I would be eligible for IVIG. And all because I am seronegative, like 50% of patients with my diagnosis. I don’t even know if I can fight the fight for treatment any more. My steroid trial proved I have an AI aetiology, but now there is no treatment?! I can’t even explain how I feel about the shittiness of that. I feel like I am falling.

I know that my mind is a messy, noisy place.  I know I need help getting into a better frame of mind.

Let me know if you know how I can do that.

For now I am just putting it out there.  Crap begets Crap.

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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.

 

8 Great Things you can do to Live Well with Chronic Illness.

I sat yesterday morning in the infusion centre beside a beautiful woman called Christine.

We always try to sit together when our dates coincide in the infusion room at Auckland City Hospital. She goes more regularly than I do, for her regular vials of IV Immunoglobulin.  Every fourth Monday since we first met, we’ve been sitting together while her IVIG boosts her fight against Myasthenia Gravis, and my Pulse Methylprednisolone suppresses the cause of my Pandysautonomia. She’s great company.

I am always impressed with Christine.  In the face of some truly difficult and devastating challenges, she always looks beautiful and is beautiful.  Carefully groomed, well dressed with such a warm and  lovely nature.  She always has a bag full of occupations to keep her busy.  Yet, she makes time to chat, to ask how things are.  She remembers my kid’s names and cares about what they’re up to. She works part time as an English tutor and is studying the Maori language in her spare time. She is a devoted mother and grandmother, wife, neighbour, online patient forum member, and friend to many. I honestly can’t comprehend how she manages all of those things, every day, and a severe chronic illness as well. But her example makes me want to be better at living with chronic illness. She has made me think more about all the things that we can try to do, to distract, manage, cope with and transcend chronic illnesses.  She is one of the people I look to for guidance, carefully watching how they do it. There are some incredible people out there to learn from, I bet you know some too.  You probably see one of my sources every time you look in the mirror!

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Here are the 8 of most effective ways of overcoming I have observed in the world of chronic illness.
Some strategies:

Get Right-Brainy

Knit, crochet, write, listen to music, paint, sew, create, play an instrument, make, or do whatever it is you can do within your ability. Remember the complete satisfaction of creativity? It’s transformative, distracting, wonderful.  Listen to creative people talking about their creativity. Invite creative people over to teach you techniques. Watch YouTube tutorials. Do some online courses. Search for ideas. If you can, attend cultural events, musical recitals, the ballet, a musical, a movie festival, poetry reading, gallery or museum.  If you can’t, visit them online.

 

Source: http://meetmeatmikes.com/craft-saves-the-day/
Used with the generous permission of Pip Lincolne: http://meetmeatmikes.com/craft-saves-the-day/

Get Involved

Participate in the initiatives and events being organised by your patient groups on facebook and elsewhere.  Get to know others. There is so much soul-food in the solidarity of people who have travelled the same paths as you. Engage with them. Help fundraise for research. Get the word out in whatever ways are available to you. Post, and comment in patient forums. Ask questions, help out with the knowledge you have gained on your journey already. Finding your tribe is so good for you.  So affirming.  And there are always avenues to be proactive about the circumstances chronic illness has given you. Being an involved member of society is a wonderful way to begin to overcome.

Get Ready

I have spent days that became weeks that became years, living in old jeans, t-shirts and sweat tops, or staying my PJs. It made me feel even more grey and unattractive.  If you can manage it, find a position that works for you near a mirror and put on some makeup. Brush your hair and find something nice to wear, even if it is simply a favourite scarf. Sometimes, getting ready for the day, even if it is likely to be the same as yesterday, makes you feel a little brighter.  I don’t understand the psychology of that, but it just somehow seems to work. When my Mum was battling ovarian cancer, she spent some time with the good people of the ‘Look Good, Feel Better’ Foundation. She came back armed with bags of goodies, a stunning make up look they had helped her to create and new ways of styling her headwear. She walked taller, smiled more and reported more energy when her lippy was on. It’s a kind of magic for the self esteem, somehow.  A lesson I need to remember more often.

It changes how you see yourself, which

Get Outdoors or Bring it In

Even if getting out takes enormous scheduling, incredible effort and results in days of payback, try to get out when you can. Try to make it into the outdoors to look at the beauty of that sky, to breathe in that fresh air and feel a breeze on your cheek.   Even rain feels incredible when you have been stuck inside for too long. I have never felt so amazing as when I floated in the warm sea on my back, blue sky above and white sand below. It’s so therapeutic. We are born for nature.  If you are bed-bound, see if someone can bring you something beautiful from outside from time to time. My kids have always been so lovely with this. A cicada shell, a posy of autumn flowers, a droopy dandelion seed head with all the wishes, wished.  Treasures from outside to hold and to take your mind out there. Maybe you miss seeing all that beauty for yourself and it’s impossible.  Take a look at my photo series from Be Couper: How to Just Be.  She has generously shared some of her stunning photography for my readers to lose themselves in, when nature needs to come to you.

Be Couper Yellow Skies

Transport Yourself

Reading, listening to audio books and watching television series or movies will take you places!  Overcome your reality with a healthy dose of fiction. It’s brilliant to vicariously live the experiences you can’t easily have. Audio books are particularly helpful because you don’t have to lift the book or strain your eyes.  Libraries usually have a good stock that you can order. Sometimes even online!  The Book Depository has free worldwide shipping and a staggering range of titles if you prefer to buy. When I really want to get outside of myself, I call a close friend or family member overseas and indulge in a long chat. Imagining the things they tell me about, where they are, how it looks, how it feels. It’s armchair travel with the joy of connection. Bliss.

It changes how you see yourself, which(1)

Laugh

…because laughing raises your endorphins and happy hormones can’t help but leave you, happy!  Watch the comedy channel. Listen to children talking amongst themselves or playing games. Be silly.  Pull faces and do funny accents. We have a dress-up box and nothing makes the kids giggle so much as coming home to find mummy in an odd wig. Wear crazy things, if that is your thing. Listen to podcasts from clever comedy writers. Read funny blogs. Let your children choose your clothes for a day. Google jokes on subjects that you find funny.  Tell them to people. Recall funny memories and tell them to the kids. Friends.  The nurse.  And when you laugh, make it big!  Breathe deeper, laugh louder, linger longer on the funny bit. It’s good for you.

Find ways to tell people how much you(1)

Give

Chronic Illness teaches us so much.  We often would rather skip the lesson, thanks. But we get it. And consequently, we ‘get’ a lot about life; about what is important. About how to truly love. About patience, compromise, honesty and communication. Be generous with that hard-fought wisdom. Be a good listener. Do you have a talent or skill that you can offer?  A wonderful person I know is severely debilitated by her illness. She volunteered to cut up blankets for the SPCA.  Because she could do that.
Do the household tasks around you that are achievable. Fold those clothes.  Chop the veggies in your bedroom or set-up on the kitchen floor.  Whatever works for you. Maybe there is something else you can think of that you could do for someone? Find ways to tell people how much you appreciate them.  Because being generous is one of the ways that human beings become happy.  If you can’t give of your energy; you can give of your heart.

Find ways to tell people how much you

Find Your Thing

All of these strategies are things I have observed in people I admire with chronic illness.  Some of them work for me too. But for me, the greatest of all is writing. It is my favourite overcoming tool. Writing a blog is a focused habit of writing that I use as my therapy, my release, my way to help, my journey to memory, my connection with my community. If you would like to try blogging too, I recommend it. It can open doors you might never imagine. Being part of the blogging community has also introduced me to some of my favourite regular blog reads. It has given me a format for my research and learning around Dysautonomia and an avenue for meeting people I may never have met if I hadn’t begun to write. I can’t thank Kylie at Rainbows and Clover enough for starting me back at the keyboard, or my fellow Dysautonomiac, Michelle Roger, for sparking this blog by doing such a rad job of her own. And of course… Pip Lincolne for teaching me how to make it happen! I hope that someone else out there might find the spark too.  It’s helping me overcome, every day.  Ask me about it!  I have an online course recommendation! 😉

Whatever methods you employ, don’t give up. There are always, ways to overcome.

Find ways to tell people how much you(2)

Have I missed some good ones?
How do you distract yourself from the daily realities of chronic illness?

…and Christine? You are doing brilliantly. Thankyou for being such a stoic, thoroughly great person to infuse and enthuse with. Kia Kaha.  Stand Tall.

NB. to my shame, this one of the only Maori phrases I know, but it is useful and pertinent for a girl like me, I use it all the time!