Student

She is standing in the witness stand. The trial has been dragging on, but she is here for a very important reason. It’s time to tell the perpetrator exactly what impact their crime has had on her life. She’s been waiting for an opportunity to make her voice heard.  Yet she doesn’t even know if her words will make landfall. Still, she has to say them. She takes a deep breath and begins to read a letter.

What would you write_(1)

Imagine if you got the chance to tell your Diagnosis exactly what it has done to your life. If you were writing that letter, what would you say? What would your ‘victim impact statement’ describe?  Here’s mine:

headerDear Dysautonomia,

Some of my friends have pet names for you.  But I have never wanted to do that.  Calling you something cute might give you the idea that I’d like us to be friends, when I don’t think that is possible.  I often wish I had never met you.

I’ve had weaknesses in my autonomic nervous system, since I was a kid. And that was okay; just something about me I learned to make adjustments for. Those little quirks of my system, the fainting, the tummy aching, the tiredness.  Those things were just something to accept, like my lack of natural talent on the sports field.  Who needs basketball when they have books?

Then you arrived with full force.  You came in through a window left open by a nasty virus.  You made my already wobbly autonomic nervous system your target.  You hijacked my immune system and made it your henchman. It’s been doing your dirty work ever since.  You hid there, where they didn’t think to look for you. Sneaking around my nerve junctions, sliding out of view as one doctor after another searched for the reason behind my ills.

First, you had a go at my heart.  They put in a pacemaker to limit your influence.  Then my digestion, and my ability to go to the toilet. You made my extremities burn and numb in relentless torment. You troubled my focusing ability and pulled and pushed my blood pressure into a see saw of ups and downs. You made it hard for me to regulate my temperature and threw in some dizziness every time I moved into an upright position, you drowned my days in bone sapping fatigue.  You shifted my career well out of my reach. I felt so purposeless. The doctors gave me pills and potions, enemas and catheters.  For every trick you pulled, we tried counter-manoeuvres. Few of them were effective.

There were times when it even seemed like you had taken the shine away from the best treasures of my life.  My marriage and the motherhood I had longed for.  These gifts were tarnished because I couldn’t be the wife and mother I yearned to be. I was angry with you for that.  Angry on behalf of the beautiful people I call my own, too. I was so angry about the freedom I had lost to you; they had lost to you.

I hoped.  For six years, living with you, attached to my every move, dulling my capacity to think.  I hoped.  Someone will discover something, I thought.  Medical advancements are happening all the time.  Maybe they will identify something important in those minuscule, sparsely funded research studies.  And they are. Little by little the scientific community is inching their way towards something.  I chanced upon a keynote presentation by a neurologist in the States. A man who has studied autonomic ganglia for years. It flicked a switch in my brain and I began to see.  There might be a way to finally let you know, Dysautonomia. You’re not welcome here.

And now, I’m on a very promising treatment pathway; I’m getting the movers in. I just wanted to write you this letter as we attempt to excise you from my life.  My own victim impact statement. All those things above, they are painful facts about why I don’t like what you have done to me.  But there are other facts too.  Surprising gifts you’ve given, even as you have been carving your swathe through my autonomic nerve fibers.

You taught me that I could find things out.  Figure things out, too, things way beyond my artsy brain.  You led me to patient groups where I have found some of my staunchest friends.  And you forced me to re-arrange my interior self. To consider who I am and what I want to be remembered for.  To identify the things that really matter.  To let the people I love know how I feel.  And you gave me back a gift I had dropped a long time ago.  You made me write again.

I don’t know why it is that it takes hardship to gain insight.  But it does. Being sick with a chronic illness, dealing with you, Dysautonomia, seems like too harsh a price to pay, but I would pay it all over again.  To learn what I have learned, to become who I am becoming.  I would like to tell you that although I don’t like you, didn’t want you in my life and would dearly love to see you go, I am grateful to you.  You are my shortcut to wiser living.  A portal into a new and better me.

Thanks for that.
 I also want you to know, that even if I never manage to eradicate you from my life, I will always be your EX victim.  Because I can choose whether or not I continue to be victimised by your presence. And I choose a different perspective. To accept that every torment, is a teacher.

I remain,
Your student,

Rach

 

The Inverse of Adverse

…mothering from a place of pain…

Sometimes, for my writing gigs about parenting, I feel like there are two categories of mother in this world. It’s probably because I write for both groups. I’d like to write for Dads too, but I don’t relate as naturally to the Dad things. When I see a mothering issue, my writerly mind starts to turn it over from the points of view of two types of mum. The healthy mums and the sick mums.

Of course, it’s much more complex than that, because all mothers face diverse challenges every single day.  Many mums we see in the ‘healthy’ camp, are in fact carrying interior burdens they would cringe to let out into the daylight of public opinion, I get that.  There’s a huge crossover between those camps. Life is an imperfect art and really crap things happen all the time. You might be in the midst of creating the most intricately perfect artwork on the canvas of life when it chucks a whole can of turd brown paint over your work. It happens regardless of who you think you are, the category you fit and whether or not the universe recognises that you should have exemption. Your beautiful work of art might not get up on the gallery wall, at least, not until it’s finished. We all carry scars, suffer fresh wounds.  We all have reparation work to do.  The Bad Stuff happens everywhere, even when it doesn’t look like it.

The other day, I picked up one of my kids.  I recognised the car in front of me as one of my friend’s.  I didn’t get out of my car to say hi (although I wanted to.  I am learning to look after my limitations better so I can cope for longer in my upright world).  She knows me, she knows my stuff.  So I sent her a message on my phone, from one driver’s seat to another  “Hello Beautiful!” I tapped.  Because she really is bona-fide beautiful.  This Mum is the sort of Mum that other Mums look at and their insides sink.  She looks perfect.  A tiny little frame, perfectly groomed hair and face, clothes you wish you had hanging in your own wardrobe… if only they made them ten sizes bigger!  She’s got a few degrees, a chic home. Bright, beautifully mannered children.  Oh, and that car rear I am staring at?  Very nice thank you very much.  The lady’s got class …and the means to show it.
And in truth, I really like her in spite of all that, you know?  😉 She’s personable, approachable, interesting and funny.  She’s a genuinely lovely person.  She slid elegantly out of her driver’s seat and came to chat with me at my window. I was struck by her beauty.  Sigh. Suck in your tummy, Rach.  Put on your smile.  I wonder how she really is?

How she is, really, arrived about two minutes into the conversation, when she revealed that she is facing not one, but two, major health crises.  I stared at her flawless complexion and thought about the torment that must be happening behind that beautiful face. Her vulnerable eyes are shielded by reflective sunglasses. I feel so lost for how to comfort her.  Even though I know it.  I know that torment. The ache of the sick mother.  The loneliness of facing your own mortality in the mirror.  The frustrations when the sick stuff leeches into the mothering stuff.  It’s horrible.  Unfair.  It’s life.

My heart is tuned toward the mums who are mothering while sick.  It’s like I can hear them, sobbing in their wardrobes, hiding from their children. I see the images that haunt their night time dreaming, their fears unleashed in a scape not limited by reality.  I feel their thumping hearts as they consider the most awful possibilities. A final severing of the metaphorical umbilical. The thought of life without them in it.  Carrying on.  Of some other person, filling their dent in the bed, their place in the world. The sick mothers, thinking about their babies, as much part of them as their own pulse and breath.  How can you even begin to prepare your babies for a world you may not be in?  And how can you do that without suffocating them in your arms and trapping them in your presence?  How can you step away from the feelings, to balance your mothering, when you live in fear?

There is so much to be afraid of.  But nothing we can do will change our truth.  Big life stuff is an irrefutable fact. It’s just part of the shape and texture of the life we happen to be living.  It’s real. It’s here. There is freedom in speaking it out. In owning it. And there is relief in surrendering expectation to a new paradigm. And because being sick gives it’s own gift of perspective and gravity;  there is something quite extraordinary that we get to tap into.  We get to mentally jump off the expectations of perfection.  We get to let the pressure drop. We get to focus on the things that matter most of all.  If we are prepared to leap into a new way of viewing our crappy situation.

My mother heart projects forward into the future. I look at my babies, so precious.  I think of the time I have with them.  The length of which, no person knows. As unpalatable as it is, the amount of time any of us have is limited.  I think of the quality of that time and I know my purpose.  I want to help my children to become excellent adults.  Beautiful world citizens who are kind, open-minded, thoughtful and flexible.  I want them to make the best out of the crap life hands them. I want them to make our world better for them being in it.  And there is no more artful way to do that then to teach them how to respond to adversity with grace.  How to take even small opportunities and run with them. I’m a sick Mum.  And it is precisely because I am sick that I have a meaningful context and opportunity to help my children be exceptional people.

I resolve to answer my fears with determination.  My situation is a chance that not every mumma gets. I know the value of my time and the importance of my role. I will teach. I will nurture. I will do these things imperfectly and sometimes flat on my back. I will do them with love and an eye on the people my children are becoming. In every adversity there is a teachable moment.  We can do something beautiful in every ugly, uncomfortable moment. We can guide our babies into fulfilling lives.  Show them how to shore-up, talk about it, get through.  How to keep their eye on the value of every given moment.

Don’t waste it, sick Mummas.  My sisters-in-arms.  Embrace it.

One moment, one day, at a time.

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