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.

The Religion of my Heart #1000speak

On the 20th February, #1000speak will have it’s day.

#1000speak is a blogging movement for compassion. Over a thousand bloggers will be writing about compassion on the same day, in an attempt to bring more balance to world.  In an attempt to focus on the beautiful things about humanity.  The way we are able to get alongside one another and help each other, empathise with one another and even take action toward making life better for others.

Compassion

The subject of compassion is one that is close to my heart. A huge part of my purpose in blogging, has always been to improve awareness and understanding about people with ‘invisible’ illness.  Why?  So that people will have more compassion towards the people in their community who are suffering. Invisible illness sufferers, people with chronic illness or invisible disabilities are not the only people suffering, but they are people whose suffering I understand first hand. I know how desperately frightening, lonely and difficult it can be, living with an illness people neither see or understand. And I want to write words to help people see it, to help people understand it. I hope that my blog, my efforts will make a difference for someone.  I hope that their families and close circle might read the words of someone like me, who knows what it is like to deal with the things their loved one is burdened with.  I hope that my words might give them access to a new comprehension of how it is for them. It’s why I wrote this post, Imagine.  It is still the post that draws the biggest numbers, because it explains chronic illness in a way that any person can understand it.  If you are struggling to find a way to explain your illness to your friends and family, share Imagine with them.

When you look at the latin root words for compassion, you will see why compassion is so central to my purpose.  Com means withPati means suffering.  Compassion means to suffer with.  It is closely aligned with empathy, but not the same thing.   Back in June, I wrote this when I was reflecting on my relationship with religion, it is deeply entwined with my thoughts on compassion, so I thought I’d include it here.

“My soul has been trying to get it right.  I try hard to show kindness where ever I can.  This is part of the religion of my heart.  I try to see all people for who they are without the damage that has been inflicted upon them.  I try to bring thoughtfulness and calm.  I try to connect and cherish.  I try to make the step toward a person rather than take a step back.  I try to add value to the world through the children I have brought into it, by helping them build character and strong values. I try to practise compassion and most of the time, I succeed. I believe in choices and consequences and the importance of making sound decisions.  I believe that we are all important, regardless of creed or religion.  And in my ‘religion’, I think having a good laugh at myself and at anything ridiculous is good for the soul”.

As I prepare for my February 20 post on compassion, I’ll be posting things here on the blog and on the blog facebook page.  What the world needs now is more compassion.  When we can suffer with each other, regardless of the differences between us, we will find a new road towards peace, love and understanding.

Watch this from Brene Brown:
https://vimeo.com/81492863

Light Relief, The Tree and Me

 

source: harrypotter.wikia.com
source: harrypotter.wikia.com

I can be a bit intense, apparently. Is that a symptom of Dysautonomia?!  Ha!
I can get a bit serious.  Because sometimes it is hard to find the funny side of things.

But I can’t ever take myself too seriously, because I have been gifted a hubster who enjoys making fun of me (in a loving way) and making me laugh. A lot. His irreverent and naughty sense of humour has lifted me out of many a blue funk.  And I just unwittingly provide him with more comedy material, so it’s a mutually useful relationship.  Just lately, he’s been taking the piss (that is kiwi for teasing) about my self help studies.

One of the very useful exercises for self-care, one that I mentioned yesterday, is using your own hand as a ‘hand of compassion’. He thought that was hilarious.  I’ve been enduring his eyebrow toggles and suggestive looks every time I mention the ‘hand of compassion’.  He reckons he knows just where my compassionate hand should land, somewhere in the vicinity of his body.   Wink.  Nudge.  Eye roll!  He had the same joke about one of my favourite poetry books Where Your Left Hand Rests by Fiona Kidman. I think he hoped it was an instruction manual.  Honestly, are all men this way?

And then we were talking about a mindfulness exercise that I wanted to write about today.  I have been learning about how being “present” can provide you with an opportunity to calm down the negative self talk.  See, when I am thinking about how my body feels, it kicks off a litany of destructive thinking. This is a very common thought pattern for me because this body likes to slap me to attention, like an annoying brother, incessantly pushing the point, digging me in the ribs, lifting up my eyelids YOU AWAKE? RIGHT, SINCE YOU ARE PAYING ATTENTION… LOOK AT ALL THE WAYS I CAN ANNOY THE CRAP OUT OF YOU TODAY!  POKE!  SLAP! BLINDSIDE! THWACK!  And so I respond to that little shit with some very negative talk.  But I direct it at myself, because that is a bit less crazy than talking to my body as though it isn’t me.  I talk to me.  Inside my head. The track runs similar to this one:
Ugh.  Not again.  I can’t keep doing this.  Oh no…  so much is eroding.  I can’t go to school this morning to see my little guy do his thing. Another thing to miss, why couldn’t it be yesterday? I could have done it yesterday.  Poor me. Poor family. Ow… Yuck, that is so revolting, why do I have to deal with so much yuck stuff? How much worse is this going to get? Will my man get tired of dealing with me? My kids! Will I end up in a stinky nursing home, a drain on my family’s resources? Will I die before I’m ready?
And a freak out will be had.  Does that sound familiar?  Does your mind talk to you this way, too?

It is impossible not to be mindful of how my body feels. But by using the technique of mindfulness, it is possible to arrest the thinking patterns that give me anguish.  It’s like a kind of meditative awareness. So this is what I am doing.  Russ Harris (author of the book I talked about yesterday, The Mind Slap, and inventor of this exercise) says that if you are experiencing a lot of stress, you might need to do this excercise often.  It designed to help you be present with your pain. It helps you to develop the awareness of your thinking such that you don’t slide into the thought patterns that distress you.  The habit of that nasty self-talk that makes living with Chronic Illness a more scary, lonely, upsetting place to be.

THE TREE __ An Exercise in Mindfulness(4)Of course, if you are horizontal, you just have to adapt the tree image.  You can use your imagination about how to make the trees roots, trunk and branches work.  If I am stuck in bed, I use the foot of my bedframe to ‘ground’ myself. Or place my feet flat on the mattress with my knees up. Just adapt it to fit you, in your minds eye you can be any shape you want to be.  Here’s my audio version if you would rather listen:

 

 

So anyway, there I was last night, sitting in the living room, thinking about some serious shizzle.  I see my hubster out of the corner of my eye.  He is waving his arms around like he’s trying to get my attention.  I turn to look at him and all six foot three of him is doing an impersonation of a whomping willow.  In slow syllables he intones: “I am a tree…”  and I snort my tea.

Mindfulness is really good.
So is light relief.

 

I like you.

The other day, someone told me that the best advantage you can give kids is the ability to build good relationships with other people.  They learn this from watching the relationships in their world.
What does a good relationship look like when you are parents?
It’s probably a bit different to what it looked like before the kids arrived. Like, an interplanetary timewarp, different.  Same people, different planet.  Whole new meaning for the word ‘good’.

I like you...

Pre-kids, we measured our relationship success so differently.  Gifts, beautiful meals, the occasional romantic getaway.  There was lots of physical affection, winks, nudges, eye contact and fascinating, far-roaming conversations.  We’d gaze at each other in the candlelight and congratulate ourselves on how connected we were.  Passionately in love, deeply in lust, we had gigantic doozie fights, with door slamming and name calling.  And we were proud of the fact that we never walked away from an argument without resolving it. Ah, lurve.

These days I think love has smoodged over to make room for something pretty important.  Like.  Those two together are what I call a successful relationship when you are parents.  I love you, and dammit, I choose remember why I like you, too.

Remember when you were at school and someone nudged you and said “he likes you!” and being ‘liked’ seemed like the highest form of devotion possible?  We denigrate the word ‘like’ to a much lower than ‘love’ status.  But liking your partner, even when you are sleep deprived, your boobs hurt, you disagree on dummies, and you are certain that they really don’t ‘get’ it, whatever ‘it’ is that day….actually liking them on Planet Parent can be pretty tricky.  The increase in relationship break ups is testament to just how tricky it is.

It matters that you like your partner, because your kids are a product of your relationship.  If you don’t like your partner, the message to your kids is that you don’t actually like half of what makes them who they are.  It matters that you like your partner because it is easier to parent as a team than as two people who aren’t even friends.  It matters, because when you like someone, you are kinder to them.  Kindness in human relationships is exactly what kids need to see.  The future of our world literally does depend on it.  If there is something they are doing or not doing that you don’t like, remember that it is a behaviour, not who they are.  And tell them about it!  Most of us haven’t got a clue what pushes each other’s buttons.  Talk about it before it erodes you.

The kicker about this love+like combo, is that somehow, finding a way to have both in your heart for your fellow parent matters, even if you aren’t together.  I have taught so many children whose hearts are broken because their parents marriage is broken.  It happens; often it needed to.  But not to the kids! They watch with eyes, ears and self esteem wide open as the two people who made them rip each other to shreds.  They suffer your battles on a much more personal level than you do, because they are biologically attached to both sides.  There is no escaping who they are.  But it really sucks if you are hearing your parents point out the worst of both halves of you, ad nauseum.

Find the character strengths and positive personality traits your child inherited from your co-parent.  Focus on those things when you are discussing them in front of your child. The rest of it can wait for another time when the intended audience is the only one hearing you.  I am not a big celebrity fan, but I read this quote from an love-embattled star recently “We’re parenting, and working out if there is still a relationship to salvage”.  I think it is awesome that the parenting comes first.

What does a good relationship look like when you are parents?
You know those scenes in war movies, where everyone is leaving the smoky battle field?  They’re battered and worn out, maybe an eyeball or limb is missing, they are smeared with grime, matted and messy?  They slap each other on the back and say something wry and witty.  Satisfied glances are exchanged and the grins are contagious.  They’ve won.  They did it.  Together, somehow and against all odds.  That is what a good relationship looks like when you are parents.  It’s a look between two battlers.  It’s congratulations after a day hard fought and won.  It’s celebrating the beauty you’ve created by acknowledging the good bits in each other, in front of the kids you made together.  A good relationship between parents creates good self esteem in kids.  And it is a much friendlier way to take the journey of life.  Together, with someone you like.

I want my kids to be ambitious about love and find someone to be with that they actually like!  Someone whose company and conversation brings them comfort and calm.  The very best way I can show them how to find that, is by finding it with my man, every day. If they see the way good friends can resolve conflict without hurting each other and shoulder burdens without dropping the bundle; well I think there is a good chance they will know what a good relationship looks and feels like long before they have to choose one for themselves.