There is a specific kind of guilt that can plague survivors who got through something life threatening and come out the other side. Maybe it was an accident, trauma, war, hostage situation, cancer, domestic violence, child abuse, hurt. The guilt swoops in once they realise that they survived but others did not. So the question ‘why me?’  ghosts through their minds, shining spotlights onto every part of them that is not worthy of the gift of survival.

I do not deserve this. Everyone does. So why did it happen for me and not for them? How can I make sense of it? What hierarchy of soul assets could ever possibly qualify me to deserve reprieve when others get none?  None of what I have within myself is superior to any other human. Is it all pure chance? Luck? Universal benefaction? Godly miracle? Alignment of planetary bodies? Karma?


picture of an oil painting by John William Waterhouse (1916) of a redheaded girl looking out to sea at a chip being wrecked on the rocks.
Oil Painting by John William Waterhouse 1916 “Miranda -The Tempest”

Why me?

Why not me..? Answers back. That small audacious whisper. I hush it back into it’s corner. How dare it speak up? The mirror in which I examine my value magnifies my insecurities.

It was easier to wonder why not me when I was sick. Worthier. It was easier to push, using all the survival drive my physiology could muster. Why not me? I tried and sought and searched and strived. I wanted to survive. And now that I am thriving?  I wonder if it is a monumental case of mistaken identity, was it meant for me?  I fear that I cannot do it justice. I exhaust myself with my desperate need to never take anything for granted; gripping on to the epiphanies of illness.  I prostrate myself into works of compensation, trying to redress the balance that tipped things into despair and took so much from the people I love. I burn the energy that has been gifted to me on the backlog of yearnings. The things I missed. The things I couldn’t be. The person I think I could be but maybe, will not.

I just want you to know, you who continue to suffer, I want you to know that I have not simply sailed off into the sunset. I struggle to write for you because I feel like my remission has given me something you don’t have, and that feels unfair, like a betrayal. I wonder if you find my words aggravating, or boastful, a reminder of all that you cannot do. Those among you that are close to me have assured me that my story brings you hope, but I worry that it also brings you pain. Because, see? There I go again. Doing the things you can’t do, living the life that eludes you. And I do want to live that life, because it is mine.  I even want to go sunset sailing, sometimes, though I have no sea faring vessel. I want to run away; I want to stay.

One of my favourite poems is by Christina Rosetti. There is a line that expresses the way this feels

“When I half turn to go… yet turning, stay.” 

I have never been a goodbye girl. I won’t do it. So I remain here, caught on the cusp of sick and well. My hand reaching out across the divide between our experiences, the distance between our hands growing every day.  I think I have that hated thing called ‘ableism’. Because I do believe, with all my heart, that there is a massive difference between being well and being disabled through illness. And I think it is better to be well.  I think most of you with Dysautonomias think that way too, but dwelling on that is too painful. When ‘well’ is out of reach, people make do, we find joy, we build meaning where we are. It is a triumph of psychology. By far, the hardest thing I have ever done, was staying afloat through all those years. I was not always successful. When I sank under, you lifted me.

And here I am, washed ashore; not drowned. Dry, standing at the edge of continental opportunity. I have caught my breath. But I stare back out to sea wondering if you are treading water in shark infested waters. Willing you to keep your heads above water, to find the flank of our ship wreck; to hang on. My soul flies across the deep but the winds and tides can’t hear me. I am impotent to ease your suffering. And I am sorry.

So sorry.

Take the Shortcut, Mama

The internet abounds with advice on how to be a good Mum.  How to prepare delicious and healthful lunches and treats for your small ones.  But when you are ill very few of those things are attainable without having a payback elsewhere.  Spend two hours baking, spend the rest of the day horizontal.  Mill your own flour and make your sushi from scratch?  No worries.
On another interplanetary dimension.
Not in my kitchen, not on my, limited, vertical time.
Instead, I have had to become adept at taking the short-cut.  The long way around is not something I have the capacity for.  There are four kids here.  It’s no small task catering for twenty school lunches each week.  And so, these few short-cuts we have developed out of necessity.

What you will read here is what our normal ‘lunchbox routine’ looks like.  I bet you’ve got some tricks too even if you don’t have Dysautonomia and kids.  Mums are good at finding tips and tricks for the ho-hum stuff.  Today I can do some of these things on a Monday instead of a Sunday because we’re having a public holiday here.  Queen’s Birthday Weekend. And as is usually the case on a public holiday, we’re using the extra time to prepare for what is ahead.  Because being chronically ill means always being prepared.  Like a scout.
Only less full of youthful exuberance.

So, today I have been busy preparing school lunches for the week to come.  I can’t do lunches each morning because mornings are too challenging for me.  I need to let my medications do their thing and the transition from eight hours horizontal to a more vertical day is always a slow process.  Being prepared is key. Here is the low-down on our lunchbox routine for those of you who are chronically ill and mothering, too.  Sometimes, it’s good to know that someone else goes through this stuff too… or maybe you are just starting out in the world of mothering-while-chronically-ill.  Here are my tips for joining the “shortcut mama movement”.

Let Go of the Guilt
All the wonderful lunchbox advice out there doesn’t pertain to you.  Let go of it.  Think about how you are using your energies.  They are limited.  Spend them on more meaningful things, like listening to your kids, hugging them, teaching them, being with them.  I have allowed myself to accept compromises as part of our life.  Even in compromise there is something wonderful to discover, not just for me, for the kids too.  So, I don’t feed my kids all organic, all raw, all home-made deliciousness.  I’d love to, but I have let go of the guilt about not achieving that.
I feed my kids: food.
It’s home-made whenever I can manage it.  And when it isn’t, it is at least there.  Lovingly prepared and packaged. It provides them with the nutrition they need to grow and thrive.  I am thankful for it and refuse to let the expectations of the sick-less world at large feed my mama-guilt monster.  Bite me.  I’m doing the best job I can do.

Become a ‘Prepper’
Have you seen those crazy shows about Survivalist Preppers?  I like their style (well some of it, not the guns bit).  Similarly, we have adopted strategies to survive, albeit our morning mayhem not armageddon. My hubster assembles the lunchboxes in the mornings. He’s a good sort, but until we developed our system, there were lots of swear words sneaking out under his breath every morning.  It wasn’t a nice way for him to start the day.  Now, we have a system and it works really well.  Each kid has allocated lunchbox food, already good-to-go. It starts with a large box each in the pantry.  In that box are the components for their lunchbox that don’t need refrigeration.
Screen Shot 2014-05-26 at 4.32.54 pmEach kid’s pantry ‘snack box’ contains two school weeks worth of lunchbox snacks.  So, for example…
10 x pre-packaged savoury snacks
10 x mini choc bars
10 x muesli bars
10 x pre-packed/wrapped biscuits
10 x packs of dried fruit
Screen Shot 2014-05-26 at 4.32.54 pmIn addition to these, our fruit bowl has enough seasonal fruit for two pieces of lunchbox fruit per day.
Screen Shot 2014-05-26 at 4.32.54 pmIn addition to that, our freezer contains frozen sandwiches, 1 per day. My hubster makes up three loaves of bread at a time, into sandwiches, wraps them, bags them in initialled bags for the freezer. The teenagers prefer to make fresh sandwiches or pack up leftovers each morning.  More power to them! 😉
Screen Shot 2014-05-26 at 4.32.54 pmAs a bonus, when I manage to bake*, or if baking is given to us, we pre-wrap portions of that and freeze it. Leftover birthday cake freezes really well too, so when birthdays come along, I bake a double size cake, or order a big one in.  Leftover portions of lasagna, pasta, quiche and pie also make it to the freezer to be re-born as lunchbox variety on another day.  The trick is in pre-wrapping the portion to prevent freezer burn.  It will thaw in the lunchbox between when it is packed and lunchtime.  Variety really is the spice of life.

In this way, my hubster can literally throw together the lunchboxes while the kids are eating their breakfast.  It is a no-brainer and cuts enormous amounts of stress from the morning madness at our house.  The little ones need him to do it for them, but as they get older, they’ll begin to fill their own boxes, just like the teenagers do.


Pace and Pool your Efforts
The pre-wrapping of these things takes time.  I like to pull up a bar stool to my kitchen bench and have everything to hand.  But I only ever tackle one lunchbox item at a time.  Today, it was biscuits. I’d love to be able to have a Prep Day and bake, pack and freeze all in one go, but that ain’t my life.  I do often get the kids involved; they can count and fill the pantry boxes as easily as a grown up can, with direction.  They love to decide ahead which snacks they want in their boxes (within certain parameters) and happily, I find that if they have asked for it, they’re more likely to finish it than leave it in their lunchbox.


No Nudity (sigh)
We have tried greener food wrap measures. However, because it is necessary for us to prepare so far ahead, we need airtight, flexible wrapping options.  We don’t have the funds to buy a large number of wrap-free containers.  The ‘Nude Food’ movement doesn’t work for us.  This is one of our many lifestyle compromises.  I was recently castigated by one of my kid’s teachers, for using mini zip-loc bags.  I do understand her sentiments. Zip-loc bag closures endanger sea creatures.  Our compromise is that I cut the zips before disposal.  But for us, zip-loc bags are a godsend.  They keep biscuits and other snacks fresh for a much longer time.  Quantities can be amended easily and the bags are easy for the little kids to get into. They can also be re-used.  We also (gasp!) use gladwrap.  Again, bite me, guilt-monster.  I am saving the environment in our home before I save the environment outside it.  Green sentiments are easier to carry for those who are well.

Procedures prevent pandemonium
So mornings work a treat: lunchboxes are loaded, drink bottles filled, bags packed and off they go to school.  But, when we first started, the whole thing would fall apart the next morning when we couldn’t find the lunchbox or drink bottle.  It is a truth, universally acknowledged, that Mums have superior findability.  So, despite the difficulty, I would have to get up (always too fast) to find those lost lovelies; bending over, struggling and putting paid to a decent day all in five minutes of mother helping (yep, sometimes that is all it takes)! So now we have procedures.  After school, the bags are brought directly to the kitchen and… ta da! Unloaded.  Homework to the table, food stuff on the bench, rubbish recycled or disposed of.  I know, it probably sounds like ordinary common sense, but it has taken us some time to adopt.  Mercifully, it has meant that there are less swear words muttering forth from under my breath too.  This is good, ’cause I know some pearlers that my sweet babes don’t need to hear!

What measures and amendments have you made in your household to make mornings smoother?  Do you have particular lunchbox strategies that work for you? 

Join the “shortcut mama movement”!   Please comment below and share your ideas with us!  I know there are some nifty things out there that have never occurred to me and I can’t wait to hear them!

*don’t sweat it if you can’t do baking.  See ‘let go of the guilt’, above!  But if you can manage a bit of baking sometimes, here is a link to a dysautonomia-friendly, freezable dough recipe for 100 cookies.  If you have a recipe that you find useful, please link to it in your comments.
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