#IceBucketChallenge - suddenly everyone's heard of ALS

Have you heard of the Ice Bucket Challenge? It's the latest social media craze. Everyone who's someone (or wants to be) is doing it - and not just in the States. If you can view it, the BBC has picked up on it...

Most notably to date I think, even Bill Gates took it - using his own contraption! Oprah did it, Mark Zuckerberg did it, President Obama has been challenged as well, but has yet to respond.

Why are people doing this? It's a fundraiser for ALS. And why does it matter? Because, according to the New York times, this harmless bit of fun has been powerful...

As of Sunday, the [ALS] association said it had received $13.3 million in donations since July 29, compared with $1.7 million during the same period last year.

So, why am I writing about this? I'm impressed, no awed, at the positive power of the Internet to bring to the attention of millions a disease that few people have, and therefore hardly any research is being done into. But it's not an academic interest for me... it's personal. My mother died from ALS. And that's what I want to write about - because people's stories need telling, and my mother's illness and death is not something I tend to revisit much in my mind; but this challenge has brought memories back, which I want to honour and share. Share, because I want you to know what ALS is, its true and awful face. May you never be acquainted with it personally.

So little research is being done that I don't know if I will develop ALS like my mother did. There's a 10% chance, but no test. No known cause. No cure. No relief.

Perhaps the research funded by this lighthearted challenge will change that? I hope and pray.

The rest of this post will detail my personal experience, but for the facts about what ALS is, here's an article about it from The Independent. This is not a lighthearted post, I'll warn you now, but please read it anyway.

To a diagnosis

My mum, doing what she loved the most.

My mother was 52 and a passionate accordion teacher when she noticed the fingers on her left hand were slowing down. Thinking this might be age related - don't we all slow down?, she did eventually consult a doctor when she could no longer raise her left arm higher than shoulder level.

A pinched nerve was diagnosed.

Not long after that, her legs weakened. Walking became difficult. Her solution: take the bike instead! More doctor's visits, more diagnoses. Pinched nerves in the spine? A muscle wasting disease? A virus?

It wasn't until she could barely walk that ALS was finally diagnosed. It was a death sentence, and everyone knew it - everyone, that is, except for my sister and me, because against all predictions, my mother chose to believe she would be well again. She would fight this. From that hospital bed after she was diagnosed, she went straight back to work and refused to give up her position.

Her bosses, her friends, the doctors - she stood up to them all. She would not give up her cherished teaching job. They might have to get a temporary stand-in while she was on illness sabbatical, but advertise for a permanent position? No, she would not give up, give in.

Life with ALS

Wheelchair bound - winter '95/'96

What's difficult to get across is the relentless, unstoppable advance of this disease and how, piece by piece, body part by body part, it takes away a person's life. ALS affects only muscles we choose to move (skeletal muscles) by disabling the nerves that command these muscles to move. Then, because they don't get used, these muscles atrophy and waste away - like a leg in a cast. The smooth muscles, which control things like digestion, aren't affected. The brain isn't affected. In essence, ALS traps a person in an ever less responsive prison of their body. Their body won't die for a long time - internal organs, heart, brain, all continue unaffected. But how my mother kept her soul alive, I'll never know... she hung on to her beloved job as hope, but it probably helped that she had never seen anyone go through it.

To cut to the chase, I'll answer your question now - so how does someone die from ALS then? They suffocate. Breathing is a voluntary function - you can hold your breath, speed it up, etc. - therefore, those are affected muscles. Eventually, those muscles will cease working too. And the brain is present and conscious of it all throughout.

But before death, there is life with ALS. A slow, agonising descent with no ascent possible. For my mom, this meant going into a wheelchair for a few months; when she could no longer hold her body upright, she became bedridden. I cannot fathom what it must feel like to depend on your 14/15 year-old child to feed, wash, toilet (bedpan) your body; to turn and reposition your body when it becomes to painful to stay in the same position at night - because the nerves that die are those that control the muscles, not those that control sensation; you feel everything. To slowly lose the power of speech (tongue - voluntary muscle!) and be understood only by those who are closest to you. In the end, I was her only interpreter until she lost the ability to speak completely.

How long between diagnosis and death? For my mother, just under a year.

Fighting to the end

My mum fought, and fought hard. I never believed she might die. She always talked about being back to teaching after the summer, just needing a few months' physiotherapy once she had beaten the disease.

With my sister - this is how I remember her.
Always in her 40's. Full of life.
She was only sick for a year.

One day in February 1996, she choked on some soup a friend was feeding her. We called an ambulance, which took her to hospital. It was evening, and we had to leave her there overnight.

In the morning, she was distraught. The nurses had not understood her attempts at speech and had no time to be patient. When she asked to be repositioned, they told her to stop fussing or they'd give her morphine (her big fear - being drugged 'out of it'). She'd had no water, because drinking was difficult for her and it would take time to help her drink.

I was 15, this was my mother, and I was outraged. I decided to stay in hospital with her overnight the next night, hospital policies notwithstanding: they would not remove me. And they allowed it. I cared for her as I had done at home, and that night was as normal as normal had become: a few repositionings, some water to drink. Friends and family visited the next day and I slept through much of it - hearing only later that she had stopped breathing a few times and was being revived again and again by those around her, by lifting her up to a sitting position, slapping her back, shouting. On that day, her last day, she finally made her will. A lawyer came to her hospital bedside and asked her yes/no questions, which she answered by looking either to the left or to the right. It became clear even to her that she wasn't going to be able to breathe for much longer, and she asked for an iron lung (an external breathing apparatus). It would keep her 'alive' indefinitely... but to what end? She wasn't given it.

In the evening, her accordion students came to visit. She said her goodbyes. At about 9pm, everyone had left and I was alone in the room - family were around, but all had gone off somewhere: for a snack, a cigarette, a break. I was by her bedside, cheering and encouraging her every breath. But then she stopped.

I tried what the others had done throughout the day, sitting her up, shouting, slapping her back... but she had gone. I could feel her body turning cold under my hands. So this is what death is like - it has a distinctive facial expression, which I had not seen on her before, and a spreading cold. Or perhaps, the dissipation of warmth describes it better.

ALS has taken my mother. These memories are not happy memories. This disease is as close to a living hell as I can imagine because, despite the absence of physical pain, the mental anguish of being clear and conscious throughout it all must be soul crushing. At least pain gives a focus, a distraction - ALS gives no such luxuries. It is merciless.

It must be eradicated. 

That's why we (well, my Mr.) did the Ice Bucket Challenge - and we have put our own money to the cause as well. Please join us and donate!

Freedom, self control and keeping to a diet

Life - God - has a fine sense of irony sometimes.

I'm on a diet.

Now, to most people that would hardly be a big deal... but to me it is - I don't think I have ever said those words before!

Back when I was trapped in food hell (I shared a bit more about this here), it would have killed me to admit I had anything other than a nondescript relationship with food. Nobody could know. The fact that my weight losses and gains were impossible to miss, the fact that I had to carry my shame in public, in my body for all the world to see, how I hated it - but I would never say a word.

Later, when I was in 12-Step recovery, I learned to admit publicly that I had a problem with food and was following a programme to address it. [The fact that I would never eat outside of three committed, weighed and measured meals - which sometimes meant taking the scale out in public and weighing my food at restaurants, conferences, working lunches etc. - could hardly be missed.] I was able to name the problem - addressing it as an addiction, a mental health problem.

And then, without asking for it because I thought I had all the freedom I would ever have by following that programme, I was simply and suddenly set free. God just did that.

My new found freedom meant that for the first time in a decade I was able to neither binge or starve - that food was actually just fuel, however enjoyable, I didn't have to think much about it or obsess about what to eat and what not to eat. I felt very strongly that not excluding anything [vegan], not restricting myself, just eating in response to hunger and fullness was the key to keeping that freedom. Sometimes I'd happen to get very hungry. Sometimes I overate. Most of the time, I ate what I fancied at the time and stopped when I had enough. If this sounds simple and obvious to you, let me tell you: to me, this was the holy grail of utter and complete freedom.

That's how I've eaten and maintained a stable weight for years now, since the time I was freed.

And now... I'm on a diet. Oh, the irony!

I have developed gestational (pregnancy) diabetes, genetically caused. Until the baby is here, I need to stay away from sugar. It's a diet.

Predictably enough, sugar is what I really really want now that it's off limits. I can sense the old ways, those old train tracks of obsession and crazy thinking - they are overgrown with weeds, but they are still there.

Perhaps, as a friend recently observed when I shared this with her, this is the next step in the freedom journey. Because freedom isn't doing what you want, all the time; it's the freedom to choose. Freedom is being able to be self-controlled. That is what I hope to learn in the next 10 or so weeks, until baby is here.

And yeah, I'll admit, I'm kind of scared.

Our Love Story, Part 3 - one proposal, two weddings, three rings

I've loved writing this little series, like taking a slow stroll down memory lane. Even though it's been less than three years - those were three eventful, life changing years and we're hurtling at speed towards the next milestone (baby!) so taking the time to sit and walk down that memory lane at leisure has been so lovely.

One Proposal

November 2012. It was a weekend like any other, I was in Bristol visiting Mr. and we were home, at his place. We were having a relaxed day with not much on at all. Over the time we'd spent talking, it had gone dark (as it does early in the day at that time of year) and we hadn't put the lights on. We sat, facing each other, and he went quiet as he held both my hands and seemed to hold them quite tightly. I just enjoyed the moment, a shared silence. After a while, I heard him say - very softly - "Please, marry me."

There was no fanfare. He wasn't on one knee. Because it had gone dark I couldn't see his face very well and I wasn't sure I'd heard him right.

"Are you asking...?" was my response, after a pause to try and make sure he hadn't said something else entirely.

"Yes. Yes, please, will you marry me?" he asked again, clearly this time. I just about managed to get my "Yes" out before just about falling into his arms.

Ring no. 1

After a while, he disentangled himself, took a breath, looked at me and said, "I don't have a ring..." - but then, having had an idea, he got up and went to the next room which was full of DIY materials as he'd been working on the bathroom. I heard him rumbling around some metal bits. I followed him over, and found him kneeling over a toolbox. Obviously having found what he'd been looking for, he turned to me - still on his knee - took my hand, and slipped onto my finger... a jubilee clamp!

That was ring no. 1, which I wore with butterflies in my belly for a week. He engraved a heart onto the clamp. It's still a treasured possession, but I don't wear it, as it oxidises!

Ring no. 2

A week later, we were in York and came across a vintage jeweller's. I got to choose my own engagement ring there, a beautiful 1920's art deco platinum ring without stone - that's ring no. 2. This is what I wear on my left hand.

The first wedding

We spent Christmas 2012 with my family in Austria, which meant that Mr.'s parents didn't see us at that time. So we invited them to come to Bristol for a weekend in January to celebrate and exchange presents.

Having asked them to come on Friday for a celebratory lunch, I took that day off work and drove to Bristol to meet up with Mr. and his parents just before lunchtime. We met and parked at the registry office's car park. I still remember Mr.'s dad asking if we were sure it would be no problem to park there as we went for our lunch and Mr. smilingly reassuring him that he was quite certain it would be fine... because, instead of leaving the grounds, we walked into the registry office - having a little errand to run before our lunch celebration, which was our legal marriage, at which they were the witnesses!

On our first wedding day

Once we entered the building, they understood, and the surprise was perfect.

Mr. and I were legally married in a tiny room, with a total of six persons present: ourselves, Mr.'s parents, the registrar and the officiant. The room was filled with sunlight streaming in, and the unforgettable moment for me was when Mr. faced me and made his vows with those kind eyes never leaving mine. He put ring no. 2 on my finger again, so the engagement ring became the wedding ring.

For more than two months after we became man and wife in the eyes of the law, nothing else changed. I continued to work and live in Reading and visiting Mr. on weekends, and we attended a pre-marriage course at our church: we just had a heady little secret!

The second wedding

We had set our 'official' date not long after our engagement, but had our legal wedding over two months before the official date because registry offices are apparently very busy places and we just about managed to grab the January date! The date we'd chosen was the weekend before Easter, for the practical reason that I wasn't actually able to finish my job in Reading until the end of March.

Rings no. 3 - matching wedding rings.
Engraved on mine: "I am my beloved's..."
Engraved on his: "...and my beloved is mine"
(from Song of Songs)

I had always avoided making wedding plans without a groom. I've never been the girl to pick out dresses and rings while still single - just didn't want to go there. After all, I wanted the groom to have a big say in everything to do with the wedding, not just arrive on the day in a suit! So when I actually did have a wedding to plan, I didn't do it on my own: Mr. and I were a team. We thought about what we valued and what mattered to us, and what didn't. The result was something of an unconventional, yet totally perfect-for-us event...

We're not into formal things. We love people. At our wedding, we wanted to be able to invite absolutely everyone! Friends, family, co-workers: it was to be a day of bringing everyone together. No RSVP's, no gifts, no registries - just a celebration for all. Luckily our Bristol pastor was totally up for it when we asked if we could just get married on a Sunday morning, in the course of a regular church service. This was the perfect solution: for us, there was no building or band to hire, no number of guests to plan for, no seating arrangements or decorating costs. And for everyone who came, an opportunity to hear the Gospel!

For me, my wedding day was also the day I became a member of this new church family in Bristol. They embraced the celebrations with huge enthusiasm! Everyone was dressed up on the day; one lovely lady took it upon herself to make us a wedding cake (we hadn't planned on having one); a professional chef, member of the church, cooked up a delicious buffet lunch so that after the service, everyone could just stay put and eat together.

Memorable moment of the day (although there were so many!) - after walking down the aisle to meet Mr. at the front, he leaned in for a kiss, which I refused... to everyone's great amusement... he made up for it at the end of our vows with a kiss that just about swept me off my feet!

And that's our story, folks.