Discovery

I love the internet.

That’s no newsflash, I’ve loved it since I first discovered it. Although, back in those early days, without Boolean search terms it was a time consuming place to be!  I can be a bit obsessive by nature, so I liked to explore all the the page results.  Thankfully, search engines got better.  And these days there are so many places on the net to discover new things.

When I am having a particularly bad day, music helps me a lot.  Sometimes, I find things on the sidebar of You Tube that have been suggested to me by their search algorithm.  That’s how I found this Australian gem, Katie Noonan.  I was looking for things by Clare Bowditch.  And You Tube understood what I needed today.

This song. But it’s not just for me. It’s for anyone who needs to get through this second, this minute.  And breathe in, now.

Enjoy.

Here are the lyrics:

I see love and beauty all around,
I also see the sadness that’s embedded in your frown
I wonder why you choose not to talk to those who surround,
I sense a fear of lifting heavy feet
higher than you want to,
I just want to believe your truth…

you stand there but you do not cast a shadow,
you walk away with every word you choose not to say
I suppose that moving on paints a new colour for each day,
I don’t like to see
dreams put on the shelf, to deal with on that one day,
I just want to be happy for you

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
and so this moment, I just have to sing out loud
and say I love I like and breathe in now
and say I love I live and breathe in now

I move on holding on to what I learn,
it’s time to let go of the notion
that the whole world’s against me
break free of shackles that formed young, time free in now
and now I know, it’s not all up to me, I can count on another
so move on lighter and be free ….

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
and so this moment, I just have to sing out loud
and say I love I like and breathe in now
and say I love I live and breathe in now

I believe in for today I just want to know that you’re okay
cause I believe in breathing just for today
I just want to know that you’re okay….

’cause I only have one second, this minute today
I can’t press rewind and turn it back and call it now
and so this moment, I just have to sing out loud
and say I love I like and breathe in now
and say I love I live and breathe in now
and say I love I live and breathe in now

Songwriters
HOLLY LAMAR, STEPHANIA BENTLEY

Drowning in the Wake.

I hear footfalls, voices.  Light shifts the shadows on my eyelids.  But I cannot move. I am suspended, somewhere between asleep and awake. Is it night? No, I can feel the warmth of the sun, a band of warmth pinning my legs to the bed.  It slides through the window, deceptively light. How does it imprison me here, a concrete statue, prone? I try to lift my head but it won’t move; my mouth will breathe in, breathe out, breathe in, but will not make words.  I cannot cry out.  I try to calm myself by listening to my heart; it is panicky fast, I try to slow it down with my mind. Count it out. Calm down. Settle, girl. You’ll be alright. I listen, numbed, to the sounds of people who cannot hear me. The air is heavy, thick with exhaustion. Gravitational pull beckons me deeper into the mattress, further into the earth, I am sure I can feel the world turn, I am deep enough in to hear the thrum and lullaby of life itself.  I acquiesce. The grey forgetfulness of sleep is soft around me.

The morning waking is difficult, always a transition of struggle. At first I become aware of myself again; the feel of the sheets against my skin, the ambient sounds around me. I check to see if I can move. And then I am wading out into the waves of waking, pushing my legs against the tide of light and life. Daylight foams around me.  The cold air smarts against my skin.  I am fighting to stay upright on the shifting sands, eyes open, forging forward into the wakeful time. Into the white light of morning.

 

Ivan Aivazovsky (Armenian Painter) 1895
Ivan Aivazovsky (Armenian Painter) 1895

“How are you today?” he asks me, hopeful.  Hopeful that today might be one of the good ones. I always know, in this moment.  If the waves of wakefulness break high and the sea spray drowns out his voice, I know that I am in the path of the storm for another day.  If the seas are calm, and pushing into the day is easier, I might smile, roll onto my back and float into the sunshine.

Becoming vertical takes time. Walking the short distance to our bathroom is like controlling a marionette from the rafters.  The strings are loosely tied and my gait comical. My legs are heavy and unresponsive in the mornings. The messages seem to take so long, the feet on the ends of my legs don’t feel like they are owned by me. They drag.  I walk by employing a swing and heft of the hips. I keep my head down, hobbled over, reaching for the walls, doors, furniture. As fast as I can I swing and shuffle myself into the bathroom and sink down onto the toilet seat; head on the bath to still the oscillations of vertigo and nausea.

I have learned to take the mornings slowly. To find the gentlest pathway into the upright world. It isn’t easy to stay afloat among the surging tide and rush of a busy family. They are preparing to cast off from the jetty, speed boat engines revving. I tread water, take my medications, open my arms for morning snuggles before the children eat and dress. I manage my horizontal hairdressing duties and tie adjusting. I am the director of movements while my husband shoulders the load. I am the strident voice of mother; teeth-brushing reminder, final inspector.  And then they are gone and I sink into the peace of my quiet house, letting the day arrive on my time scale. Letting what will be, be.

When finally, my head has given me more clear stretches than dizzy, I swallow back on the nausea and swing my legs out of bed for the second time. I sit there for a bit, bracing for the stand.

I am surrounded by the water.
It swings strong around my legs, trying to pull me under. I kick, cycling against the current. I will not drown in the wake. Not this day.

Imagine

I wonder if you could take five minutes to try something.
It’s just a short imagination exercise.

Can you imagine.._(1)

Can you imagine what it might be like, to get a terrible flu?  And how it would be if that terrible flu never, ever went away? After one week, the patience of your partner wears thin.  After all, there are kids to look after and he is working, he’s not a naturally great nurse, guys are like that… you’re sure your girlfriends will have stories to share about their men, too, when you’re better.  You’ve a job to get back to yourself, you can’t keep on waking up, saying you can’t and shutting your eyes against the day.

Then imagine that being sick carried on for a whole year.

Fifty two of those flu weeks, end on end on end. The family needs you, so even though you still feel like you felt for that first week in bed, you get up and carry on. Every time you move the dizziness sweeps over your world as your body struggles to find some equilibrium.  You are bone weary. You adapt your usual tasks so you can do them.  Sometimes you crawl. You lean against any surface you can.  You avoid bending, or standing quickly, because that might make you faint.  It beggars belief how many household tasks require bending.

You take on less hours at work, but quite frankly, your boss has had enough. You, who have always been a perfectionist, have become an unreliable employee, your sick days are mounting. You talk to them about what is going on, but the doctors haven’t been able to give you any answers.  Your boss, your colleagues, your friends and even your partner start to look at you as if you might be making it all up.  Surely if something was really wrong they’d know what was up with you?  Maybe you are not trying to get better?  Maybe you are psychologically broken, somehow? I mean, it must all be in your head, you look perfectly normal. You doubt yourself. You quit your job.  Your relationship is under pressure. The kids are acting out because you are struggling to do your parenting job too. The years stretch out. One, two, three.

You’ve been in and out of hospital more times than you can count.  It is now clear you are not manufacturing the things that are going wrong with your body.  They put in a pacemaker to make sure your heart keeps beating. But there is an endless litany of other things wrong, too.  You are afraid of dying, because sometimes, it feels like you are. There are moments in the emergency department when everyone is buzzing around you and there is nothing you can do but shrink your self into a tiny observational dot on the wall. It is too scary. Your partner doesn’t even come with you to the emergency department anymore, it’s better for the kids. You taxi in to emergency, always with a bag.  You know you will be admitted.  You don’t know for how long. In your many visits to the hospital a picture is slowly beginning to emerge. You start to research the things that are happening to your body.  Something keeps coming up on Google.  The Autonomic Nervous System.  You ask about it next time you are in.  Chins are scratched, thoughtful silences. Referrals.  Specialists.  A diagnosis.

You’ve been sick now for four years.  208 of those flu weeks, end on end.

Can you imagine what it might feel like to get a diagnosis?  You are relieved, so thankful to have a way to explain what is wrong with you.  Even to yourself.  There is a thing that you have!  Now that they know, they’ll be able to fix it, right?

And can you just imagine your distress when you discover that the diagnosis isn’t the end of the struggle… just the beginning?  You’ve been lurching through a long distance marathon with the flu, you are exhausted, always waiting for the reprieve, the finish line, the bit where you get to stop and recover. They tell you that what you have is rare and it will be hard to find someone here who understands it, let alone who has ideas for treatment.  You research more.  You join online forums, patient groups, you read everything you can. You print out and highlight medical journals and read them, searching terms on the internet, desperate to find a way out of the maze.  You put forward medication suggestions, based on your research.  Every single treatment you are on that is working has been suggested by you. Even in hospital, you have to educate the registrars who come to see you.  It makes you feel vulnerable. What if you are missing something important?  You don’t have a medical degree, you are nervous when you know more than they do about it. You email research to your doctors. The nice ones might look at it, the others might ignore it. Much like what they’ll do with you.

Then you find a group, online.  They all have what you have. There is sharing, and laughter and illness related humour (yes, it exists!).  There is compassion and kindness and expertise.  Resources and empathy and support. You are not alone. The relief is enormous. You’ve been fighting for help for six years now. You feel a different kind of worse every day. Once upon a time you used to dance. Sometimes you struggle to walk down the street and back again with your cane. Your life is light years away from the way you were before.  You don’t know if you will ever get back to the fork in the road where everything went wrong, so you can step back onto the trajectory you were destined for. If you are honest, you fear you won’t.

You’ve been sick now for six years. 312 of those flu weeks, end on end.

There are worse things, it’s true.  Some people like to remind people like you, that you’re lucky you don’t have cancer. You’re not sure how comparing illnesses is helpful.  It doesn’t change your suffering. Your cardiologist once talked about how people with your heart problems are ‘functionally disabled’ and literature from the States talks about you having the quality of life of someone with congestive heart failure.  But that’s not helpful either. Your reality is you don’t have YOUR quality of life, the one you relied on, based your decisions on, built your plans on.  I’m sure you’re grateful you’ve got your marbles. Glad that you can still walk short distances.  Thankful that you can hug your family. Maybe you’d just like to enjoy those things without feeling like crap.  Maybe you miss the connection between wanting to do something and being able to, just because you can.

What if all the things about your identity, the things you knew to be true, aspects of your personality, the things you do, the way you get around, your career, your parenting, your partnering.  What if all of those things were compromised, because you got something like the flu and it never, ever went away?

Thank you for sharing my journey, for 5 out of the three million, one hundred and fifty three thousand and six hundred minutes I have been sick. If you can imagine how this is, please be kind to the people you know with chronic illness.  It is a hard, hard road and we need your kindness.

Can you imagine?