Wednesday, 10 December 2014

Paths, Baths and Other Words - Day 11

Day 11
Apollo 11
launched at 0932 EDT 16th July 1969
It was the spaceflight that enabled the 1st manned landing on the Moon
Space flight does weird things to human bodies - on average people grow 3 inches 
after a couple of weeks and following a few months in space their bones get weaker

Today's high flier and excellent Advent Blog writer is Ali Germain. Her piece is personal, brave, informative and inspiring. Be warned, as you will see, Ali has had quite a year, indeed, quite a life leading up to this year. Her post makes me appreciate how important it is to connect, understand, prioritise and to acknowledge the best (both in outcomes and others). Ali is an Organisational Development Director for a major media and entertainment business. You can follow her on Twitter via @AliGermain1 or admire and be inspired by her photos - she is a talented photographer (especially of birds).
Female Kestrel taking flight
copyright Ali Germain

Paths and Perceptions.  Paths and Perceptions. Perceptions of Paths…  “There are no Paths”, I said to my friend.  “No baths?” my friend said. 

Before I launch in to a blog about how my other half and I have just taken 14 months to build a new shower room, the Perceptions of Paths…

On the day I graduated I was too tired to share the drive home. I laid down on the back seat of the car whilst my family ribbed me for not pulling my weight. 

Graduating at Manchester
The next day I collapsed in a pub garden, and not from alcohol! I had a series of operations over an 8 week period and was eventually sent home to my parent’s house with a wheelchair and a diagnosis of Endometriosis.  Endo what?

I read the leaflet I had been given.  1 in 10 women have it. I was young to have it at 21.  Average length of diagnosis is around 9 years.  Best thing you can do is get pregnant.  That’s a tough one because it is a chronic disease that can make that particularly tricky.  When you don’t have a boyfriend it’s even harder.  No-one knows why you get Endo and no one can make it go away.  People don’t tend to talk about it openly and most people know someone with it.  Cue sisters and aunts, nieces and cousins.

(The science bit – basically the magical cells women have in their womb that respond to hormone levels each month and bleed, have created a faction, sometimes many factions, and have escaped on a mission to take up position elsewhere, most commonly in the tightly packed pelvic area – think bowel, ovaries, bladder…The mission is unknown.  What these cells do well is bleed wherever they may be, in response to hormone levels changing, causing scabs (adhesions) and cysts and pain and pain, and the need for patient partners and friends, and warm bathroom floors for curling up on sometimes, and all of this is totally invisible. Women who have this will mostly look radiant.  Smart cells.  Smart women.)

So.  My MA in American Literature was put on hold.  My move to Nottingham was postponed.  I moved back home and was looked after by my parents and I thought about stuff a lot.  Dr Slack had told me that there was a 90% chance I couldn’t have kids.  I had a lot on my mind.

It was a tough year at home as I convalesced and managed my rehabilitation at a time my friends were taking their place in the world, following their paths.  MAs, graduate jobs, setting up cosy nests with their partners from Uni.  A preface to dog ownership and a mortgage, and a bigger car, before the terrible twos appear on Facebook.  That path. 

At that point in time, for the first time in my life, I didn’t have a path in front of me.  I had no idea what was next. 

Seems to be the end of the road
© Copyright Richard Croft
licensed for reuse under this Creative Commons Licence.

Now we have to fast forward 17 years.  Come with me now!  With no paths, time travel is possible! 

Over the years, living with my Endo packaging, I have become a Master at not having a path to follow.  I follow my nose.  I simply focus on having a really good day.  And over time, I have loads of those because they pile up one after the other.  Paths are a product of hindsight for me.  Something that only makes sense once it’s all strung together behind me. 

In January this year I was sitting at my in-laws kitchen table and I got a sharp stabbing pain in my back.  I swore.  Everyone decided I had a gall stone and we left with promise of me going to the Dr.

I didn’t go to the Dr, because I knew what it was, and I wasn’t ready yet. 

 And then it began.  After 4 consecutive years of good health I was back, a customer in the NHS system.  Endo can be cumulative.  Month after month, faction on faction, energy levels flickering, attitude chanting – be strong, be strong, be strong.   Diet adjustments, social engagements cancelled and cancelled and cancelled again.

The enclosure of an anchorite by a bishop
early 15th-century illumination from a Pontifical manuscript
(Image: Master and Fellows of Corpus Christi College, Cambridge)
My days quickly became narrow in real terms– work, eat, sleep, work, eat, sleep, repeat.  Yet on the days on the sofa between Columbo and NCIS, I went on plenty of adventures thanks to my curious mind and my iPad.  Time to think is a precious thing and I am lucky to have that interwoven in to my days.
Curiosity - the Mars rover
Self-Portrait by Curiosity Rover Arm Camera
This year I realised how much Endo has taught me about how to be.  From the practical to the sublime.  How to stay steady, how food works, how to rely on myself, how to trust others, how to show up, how to know when not to, how to never say yes to local anaesthetic ever again, how to explain how I feel, how to let others respond, how to deal with uncertainty, how to be generous when I don’t feel like it and how to feel a bit shit when that is what I want to do.

Endo teaches me the discipline of focus.  It teaches me to go hell for leather at the priorities and not to waste any energy that I don’t have on the small stuff.  It reminds me constantly that we are all products of the support network around us.

(The gushy bit - Thank you to my brother who came for dinner at 7.30pm every night for 2 weeks and listened to my drug fuelled ramblings.  And to my manager who let me wibble at him about adopting dogs day after day.  And to wonderful Tom who reminds me to deal only in what I know.  And my friends who leave me with my family ‘til I am right again because they know, that’s how I know, how to heal.  And my mum, who I know would do anything to have this herself and make it okay for me, but she can’t, so instead she diligently reminds me I told her I needed to walk every day, even on the tough ones, and she is there, rain or shine, in her brilliant purple walking shoes).

Mum's boots

Ali in 2013 with her Mum after raising £1k
for Endometriosis UK by walking
All this love and collaboration means I have quality of life. 

And suddenly it’s not about Endo anymore.  It’s about an approach to the day ahead, an approach to life.   “You must have to take care of yourself well” someone said to me.  “Yes I do,” I replied. “Just like everyone else”.

In a year where I am corporately “Exceeding Expectations”, have spent enough hours on the sofa to finally figure out Twitter, have met some wonderful like minds who can do corporate and be creative (no way!), and I have had 2 blogs published, Endo still does not define me.  It continues to inform me.   For the 21 year old English Lit grad who is still in my heart, with aspirations to be a writer one day, this year has been a very very good thing.

Just not the thing I thought it would be.

So no, I don’t think there are paths.  There are just perceptions of paths.  I think there is stuff we would like.  And there is stuff we are aiming for.  And there is stuff we need to be better at experiencing in the moment it happens.  And there is stuff we will never know about too. 

(The motivational ending – I’m looking forward to the stuff of Christmas.  To enjoying some walks, to digging out the bag from the spare room cupboard that has all of our decorations in it, to sharing some laughs with my family and to eating myself silly as long as its wheat free.  Let’s look after ourselves and each other this holiday.  Let’s be generous in our spirit and show up wholly to our days, no matter what they may bring us). 

Happy Christmas!

Robin in flight

Black-tailed Godwits at the harbour, Hengistbury Head
copyright Ali Germain

1 comment:

  1. My goodness, what a rollercoaster of a story Ali. I hope 2015 brings better news.