I’ll tell you a story to show you what I mean.  Emma first left home when she was thirteen.  Let’s not dwell on it, but it’s fair to say her relationship with her step-father was based on a topsy-turvey understanding of who was the adult and who the child; and she was without allies.  She finally left a supervised life for good when she left her father’s house at fifteen. Like I said, no need to dwell.  Emma doesn’t.  That in itself doesn’t make her unusual, after all children are mistreated and teenagers leaving home, even younger than fifteen, is sadly not newsworthy.  What makes her special is what she did next.  She stayed at school.

The people who help

Picture a broken fifteen year old girl, living alone in a flat, working nights at Sainsbury’s, going to school each day, taking and passing her GCSEs, then taking and passing her A Levels.  Alone.  No money from family, no one to nag her, no one to remind her to study, no one to give a damn.  Think about that for a moment before reading on.  It’s fair to say she wasn’t a model student, but she did have support from teachers.  She mentions two in particular, so I’ll name them here because both deserve credit for their love of a deeply troubled teenager:  Mark Thompson and Anna MacDonald.  On one occasion Anna turned up with a shopping bag full of groceries for Emma.  Such kindness makes me cry a little.  I don’t know how a teenager had such strength and such a strong sense of self that she knew she could do more than what was expected of her.  The cumulative effect of these early years is a pretty substantial debt that haunts her even now.  Afterschool Emma put herself through university and through teacher training.  It was not long after this we became friends.  If you don’t already think she’s amazing, let me tell you more.

Working together

Ostensibly I was Emma’s boss.  In truth I doubt anyone has everbeen Emma’s boss! She was the Head of a large secondary school English department, with 400 teenagers in each year group.  She’d only been teaching three years, and as I arrived for my new job each member of the senior leadership team separately took me aside to tell me she would need support: it was a risky appointment, they’d been struggling to find someone, she was very young.  Likewise, many of the old hands in the department shared their concerns: after all it was a very short time since they had been training her as a trainee teacher in that same department.  Ha!  Twelve months later and the English department was the talk of the school.  Emma’s natural leadership had boosted the GCSE pass rate by an outrageously large margin and now the English department was by far the best performing team in the school.  

Future English teacher in her Mary Shelley T-Shirt

English teachers are the worst (and the best)

Collectively all English teachers are articulate and argumentative: they talk over each other constantly, they love to argue passionately.  Department meetings mostly involve everyone trying to be the most right about whatever the argument of the moment might be.  When I moved into senior leadership and saw the way other departments conducted their meetings, I was amazed – Science departments sitting in orderly rows, making quiet notes on their computers while the team leader spoke, someone occasionally asking a pertinent question ...  I had never seen such witchcraft!  English teams on the other hand - are like herding cats.  Emma, the youngest by far, wrangled her vastly more experienced team expertly from day one, steaming forward on a mission, pulling everyone into line along the way.  It was place of great laughter and absolutely filthy language.  I’ve loved many jobs, but working there was the warmest, most tolerant, most loved-filled job I’ve had.  It was all Emma.  She was amazing.  Breathtaking in fact. 

 

Emma's hen party, this is our English Team (mostly), you can see my little monkey is clutching the original Scarf Monkey.

In those early years (eight years ago now) Emma met and married the lovely Terry.  We all trooped down to Cornwall to watch her get married.  Honestly, when I saw Emma’s family that day I was amazed to discover that she is by far the most beautiful of them all.  You see Emma is extraordinarily pretty: she has a beautiful face. 

 

 

She had always told me she was the ugly duckling of the brood, so I was expecting something akin to supermodels from her sisters.  The reality was, they were just skinny, whereas Emma is not.  So she spent her whole life feeling wrong in her own skin.  Meeting them, I wondered how for even a moment she considered herself less worthy when they are mere paper dolls in comparison to her.  What strange beasts families are. 

 

The Mighty V

Even then she already knew she was having trouble conceiving.  I think it was about seven years, an ocean of heartbreak and the blessing of IVF later, when little V finally came along.  That’s a story many of you will have already lived, but actually it’s not the story I’m telling here.  This one is rather more difficult.  Before we get to that, here is the little potato in the flesh.  Click the link to watch her boogie, in the photo below she just turned two.

Scarf Monkey Baby Wear

I don’t think it’s possible for a child to be more loved.  Here is a picture of perfection: one of these two became the mighty V.

 

 

Emma talks often about how her child will ‘know nothing but love’, which is, of course, a reflection of her own childhood.  And so it is.  This most loved of all children ever born is the perfect reward for her determination, her patience, her work, her resilience, her pain, her past.  Except this isn’t a fairytale, and my story is yet to reach its purpose.  Before we get to that, here is Emma's little one wrapped in the blanket I gave her ... next to my little one eight years earlier, wrapped in the blanket Emma gave me.

 

The worst news

About this time last year Emma was diagnosed with Motor Neurone Disease.  Known as MND or ALS (remember the ice bucket challenge?) people associate it with Professor Stephen Hawkins, but what people don’t realise, is how much of a rare case he was: MND kills half of those diagnosed within two years.  You see MND is 100% fatal and, almost always, fast.  Emma once told me that doctors call it the ‘disease of 1000 days’, because that’s how long patients live on average after diagnosis.  So, less than twelve months after diagnosis Emma has gone from a worrying tiredness and a curious weakness in her hands to using an electric wheelchair, having a feeding tube fitted and using a ventilator to breathe at night, and often during the day too.  It’s the breathing that’s the real killer.  A sufferer’s diaphragm stops working and they die of asphyxiation. 

 

 

Emma called me on the 11th April last year, when she was diagnosed.  I was in the café at my local leisure centre after my children’s swimming lesson.  Whatever I said it was woefully inadequate.  I doubt I have yet said or done anything remotely useful, because the reality is I am powerless to help and I have absolutely no idea what is the right thing to say.  I have decided the worst thing to do is say nothing, and while choosing things to say, I just do my best. 

Emma and I (with the help of the lovely Terry) went out for lunch the other day.  I live in Inverness, so it was the first time we had met since her diagnosis.  We have always found our reconnection is instant, there’s no awkward catch up and we just dive straight in.  As Terry was dispatched to order at the bar, Emma glanced over her shoulder and opened with ‘Can I just get a few things off my chest before he comes back?’ – which is how we have always been, we are comfortable in each other’s company, and time and distance have yet to do anything to dampen it.  We talked about her frustration at the total erosion of her independence, her sadness watching others do the things that she can’t: nappies, dressing, jigsaws on the floor, her frustration at not being able to go to the toilet, or in fact do anything unaided.  We talked about her inadequate father and how when it came to the crunch he failed; failed to do anything financially, physically or emotionally to support her.  MND is an expensive business, but he won’t give any of his considerable wealth to help her make the physical alterations to her house, or to pay her mortgage, even though she was the major bread winner and is now apparently not poor enough to be entitled to any real government support.  Just as her diagnosis was looming, he promised he would help, and then when she asked him later he said ‘Well that’s just what you say isn’t it’.  We talked about the saga of the hole in her ceiling for a lift being put in the wrong place and how they live entirely in a single room downstairs while it’s fixed, and other mum stuff about toddlers and the short ‘good-behaviour’ span of a two year old.  Despite the heavy content, it was good.  I loved how much she was entirely herself.

 

We didn’t talk about how often I lie awake at night thinking about her, or about how I feel utterly helpless.  We didn’t talk about dying, because the business of living cannot be wasted on the inevitability of dying.  Most of us don’t know when we will die, but some of us, like Emma, know how long we will not live.  Emma isn’t dying, she is living.  I do know that the mighty V will have enough love in early childhood to last a lifetime and that Terry and his parents will love her unconditionally, exactly as Emma said her child would be loved.  But it’s not enough.  Platitudes can’t make it enough; I am especially poor at them.  To be honest, I don’t think Emma wants them – at least I hope not because that would make me inadequate.

I was not remotely surprised to hear that Emma has been invited to speak at a conference of healthcare professionals.  I’m not surprised that her medical team has identified her as potential flagship.  I’m not surprised that Emma has surrounded herself with friends and supporters who are connected to MND themselves.  I’m not surprised that she has emerged as a leader.  I’m not surprised that Emma has thrown herself fully into fighting every step of this abhorrent disease, or that she is giving her doctor a run for his money with her pertinent, pointy questions and insistence at being at the helm of her own treatment. 

The 'Right to Thrive' Campaign

Emma has fought, and won, for the right to a tracheostomy when the time comes: a rare victory in the UK, one won by only 1% of patients, despite the potential for adding years, even decades to someone’s life (remember Prof. Stephen Hawkins?).  In reality this is a postcode lottery; some UK regions simply refuse to do them: even though in countries like Japan 30% of patients have a tracheostomy.  In the UK, MND sufferers are expected to accept the inevitability of their own death; when a tracheostomy is raised, patients are told (quite literally) they would be better off dead and they must consider the burden on their family before requesting such a procedure.  Emma simply references her friend Euan MacDonald who has lived nine years with a tracheostomy and watched his children grow up as a result.  Living long enough to watch little V grow up is her core purpose in life these days.  Is it any different for me?  At my core do I wish for anything more perfect than watching my children grow up?  

Life is good

So what next?  Life.  Life is what’s next.  Life.  Every single second of it.  Life is good.

Normally I would tell you now about my latest mighty-girl designs, tell you about my business, but you should read about my amazing and breathtaking friend instead.  She’s not amazing because she has MND.  She’s not breathtaking because she is terminally ill.  She has always been those things.

 

 

Things to read and watch:

• Emma would be delighted if you would follow her blog: Emma’s blog ‘Mummy with MND’ on facebook
• Listen to this interview Emma did with Justin Dealey at Three Counties Radio about the devastating financial effects of her diagnosis.
• Watch this video about Emma’s friend Euan MacDonald and the research centre he set up in Edinburgh. Read more about The Euan MacDonald research centre here.
• Read here to find a sample letter you can send to your MP on the ‘Right to Thrive’ campaign - fighting the postcode lottery for a tracheostomy. This is the shoddyresponse I received (in full) from my MP Drew Hendry, I'm not entirely convinced he read my letter when I wrote quite specifically about the Right to Thrive and he mentions only 'various campaigns':

‘Dear Emma,
Thank you for your message and for your patience awaiting a response. I work very closely with MND on various campaigns and you can be assured of my ongoing support.
Best wishes,
Drew’

• Watch this video made by Kevin Swan, an MND sufferer, about his life.
• Watch this video made by the MND Association about the terrifying progress of the disease.
• Watch this video about the MND Swimming the Solent Challenge

 

My other blog posts 

If you like this blog, you can check out my other blogs using the links below:

It's time to be honest about being a first time mum

Why so many women fail at returning to full time work after maternity leave

Pitfalls of working from home as a business owner career mum

A Sizeable Debate - why girls' sizing makes me mad

What About The Boys? - why I only design for girls

Feeling the Customer Love!

Starting a Start-Up

How Scarf Monkey Was Born

 

My website

Scarf Monkey 'Inspiring designs for aspirational girls'

www.scarfmonkey.com