keeping up with Michaela

Michaela Hollywood is a 25 year old whirlwind. She has a first class degree and is finishing her masters. She writes beautifully, creates podcasts, connects people wonderfully on social media, and is a huge music fan. Also, pizza. She can do anything, and gather the support of politicians and celebrities to do it. She has won all sorts of awards, had articles published the Guardian, the BBC and others,  and, somewhat less prestigiously, I’ve re-blogged several of her posts. She’s fun loving, highly motivated and a bit of a medical miracle.

Michaela lives with Spinal Muscular Atrophy, a type of Muscular Dystrophy. Her elder sister, Martina, had the same condition and, I gather, the same sense of fun and determination. Martina died when she was 14. Many children born with SMA do not live even that long.

Michaela does nothing by halves- a hospital stay that lasts months could be down to previously unknown in humans bacteria, a chest infection causes all the concern, and the expertise of her family has saved her life. So when she decided to do a thing, some sort of a thing, to raise awareness of Muscular Dystrophy, and funds for the charity Muscular Dystrophy UK, I didn’t really expect the thing to be a raffle or a cake sale. Nowhere near dramatic enough.

Instead, she did a marathon. 26.2 miles round the streets of Belfast yesterday, surrounded by friends and family- a blur of orange. The McSpecs planned on joining in for part of the journey, so we walked uphill to meet her. No sign. We loitered a while and then decided to walk the route anyway- #MovingaMileforMichaela if not actually with her. We pottered along, chatting and exploring, noticing those surrounding that we normally drive past, oblivious. Then SpursFan and Girl2 took off, running. Running towards a van, a crowd and a motorised wheelchair. Michaela was so far ahead of schedule, they’d managed a pit stop for tea.

found at:
found at:


Well, you know I don’t run. I’d been walking and was ready for bed, but added an inch to my step. Whoosh! No, it wasn’t enough. Who knew a motorised wheelchair could move so fast uphill? I only caught up with her when the police escort paused for complex right turn. A quick hug, a photo, and a handover of the collection bucket I’d acquired along the way, and they were gone again. Up another hill, in the rain, determined to complete the task.

I got home, hobbled up the stairs and slept for hours. Eventually, girls came in to wake me up with a colourful shopping list, giggles and squabbles. As is the norm, many pics were taken. (This used to baffle me, but now I quite like the recording of the ordinary little moments of togetherness.)

Today, as I read the local press on Michaela’s marathon, I was struck by something I suppose I must have known, but never realised. Michaela has power only in one hand.

What disability?

you only die once

This article comes from Dying Matters, a UK  campaign to promote awareness of dying, death and bereavement. It promotes understanding of death as a natural part of the life cycle- not a subject to be avoided or ignored, not ‘awkward to mention’ or ‘best avoided’.  It encourages discussion and the development of death plans, so that people can explore how and where they want to die.
Kate Granger is a terminally ill young doctor, open and active on social media about her life, death, and treatment experiences. She is working to ensure that the health services remember that patients are people, not diseases, symptoms, or conditions.

You Only Die Once: Kate Granger’s story

Doctor and writer Kate Granger gave the second ever Dying Matters Annual Lecture on Monday evening to mark the beginning of Dying Matters Awareness week, which runs from 12-18 May.

Kate, a Specialist Registrar in Geriatric Medicine, has incurable cancer. After five gruelling rounds of chemotherapy following her diagnosis with a rare and aggressive form of sarcoma in July 2011, she made the decision to stop receiving treatment and concentrate on enjoying a good quality of life.

Since then, Kate has written two books, and blogs and tweets extensively about living with cancer and, in particular, her experiences as a patient. She has also launched the “hello my name is” campaign after becoming frustrated by the number of medical staff who failed to introduce themselves to her when she was receiving treatment.

The lecture ‘You Only Die Once: Kate Granger’s story’ took place at the Royal College of Physicians in London. As part of the event, Dying Matters commissioned a film of Kate and her husband, Chris.

Watch Kate and Chris’s film


You can follow us on Twitter at @Dyingmatters. You can also follow Kate at @GrangerKate.

'You Only Die Once: Kate Granger’s story' was produced by FlixFilms, who have made several films for the Dying Matters Coalition, including 'I Didn't Want That' and 'Dying to Know', both of which were selected for the Cannes Film Festival.
The Dying Matters Coalition would like to thank the Royal College of Physicians for their support and funding which has enabled the lecture to happen.
Millions leave it too late to discuss dying wishes
Dying Matters Awareness Week, get involved
Kate Granger's blog

all about the clothes

Somewhere, somehow, somebody made a law. It was unwritten and unspoken, but we leapt to follow it. We had to wear pink.

I wore a pink coat. Girl1 had a hoodie. Girl2 turned up with her class from school, a riot of shiny pink. The costume cupboard had been raided. Non regulation pink waistcoats and pantaloons, spangly headscarves and cheeks adorned with highlighter pen. We mingled in café with proper bike people, sophisticated hangers on. They were here for the cycling, but weren’t watching the practice. They’d seen it all before. They were coordinated and groomed. Multi lingual. Women with scarves (pink, stylish, not from a primary school costume cupboard) knotted for the chic rather than the warmth. Men in long shorts, with pink silk scarves. Belfast has never seen the like.

There were no crowds in the morning for the practice session. A few minutes walk from our house, some of the world’s top cyclists whizzed by on empty roads, with only us to holler and whoop. The regular Belfast cyclists were having a wonderful time on the clear roads too, and got the odd cheer from pink schoolchildren, as they went about their cycling business with an added glow.

I’m not a cyclist, or any sort of sportsperson. I didn’t expect the adrenaline buzz. I didn’t expect my jaw to drop at the power and sophistication of what was happening. A bunch of guys on bikes, behaving as one. One speedy, sleek organism. And the noise. In the quiet morning, the noise of the wheels was like magic. A long building buzzz, and away. Because this was practice for the time trials, we got to see the same teams several times as they worked out their moves. It never got dull.

We didn’t know who or what, so we talked about the yellow team and the blue team and the brown team and the black team and Team Sky. They looked like velodrome cyclists, with the pointy helmets and solid wheels.

pink bike

It was a different story in the evening. Spurs Fan had nothing pink to wear, so wore an Italian football jersey instead. The pavements were packed- from one man and his dog in the morning, to the whole country in the evening. Our local streets were packed tight with parked cars. Thousands of people dripped at the side of the road, or put up pink umbrellas. The local pizza place delivered to the crowds. There were no regular cyclists on their bikes then. They were in the crowd, burbling excitedly to strangers about tactics and rules and speed.

The teams were faster the second time round- the competition was on. I did feel a bit sorry for the guys who seemed to get left behind. A group of five or so would power past, and then the rest of the team would come along in dribs and drabs. Why did they get left behind? The Brother (cycling expert) advised that they hadn’t been abandoned, it was the speed of the first five that was key in a time trial, and the ‘lost’ ones were being saved for something else. They were probably the fierce mountain men, waiting their turn to let rip.

I didn’t do the volunteering. I didn’t go to the finish line, or the start, or to any of the city centre festival type activities that went on during the weekend. We have no foam fingers, pink ponchos or clacky hand things.

I had a comfy seat by a window. I had coffee and a bacon bap. I could see all the teams doing all their things.

I had sunshine, an empty road and elite athletes.

I win.

Edit: belatedly, some wonderful pictures from the Guardian – they’ve got the pink, the murals, the big buildings, the cranes, and lots of cyclists.



global chatter

It’s been nearly a month, but what with the excitement, the exhaustion, the cleaning, and all that Christmas  brings, I haven’t been able to tell you about the Great Day Out. The TED day out. TEDx Belfast Women, held in early December.

Of course I had hummed and haaaed. What would I be doing at something like that? That’s for grown up thinkers, or creative young people, not for sleepy sorts like me… I can’t remember to do the ironing, how can I change the world?

I took my courage in my hand, I paid the money and I had a bit of a panic. Then I realised Auntie Sadie was going, so I’d know one of the creative energetic young people. She could poke me if I started to snore.

TEDx events have a combination of local speakers at the venue and shared videos from the main TED site, an interesting mix. You can watch all of the talks here.

Jenny Radcliffe– the lie woman- wondered about her job, “does it serve me?” What a challenging thought. When I had a job, what would I have answered? Another thought that resonated, “I don’t want to be helpless. I want to be a superhero.”

Lady Christine Eames talked about the importance of working with people in “their here and now.” This was echoed in the later talk from Jane Chen in San Francisco, who spoke about developing medical technology for infants to be used by mothers rather than doctors, “who cares about the problem most?”

I was fascinated by Catherine Clinton, and wished she’d been around when I studied history. I may have attended more lectures. She talked about the importance of creating a voice, the development of consciousness as part of education, and the need for resilience, creativity and future planning.


We saw a video about Dame Stephanie ‘Steve’ Shirley, the first freelance computer programmer, who spoke of gender discrimination, working from home and maths. She had escaped from Germany via Kindertransport and spoke movingly about her need to “make sure my life was worth saving.” Goosebumps.

Those creative young people were represented by Maya Penn. She’s 13. She’s properly awesome. See?

From San Francisco, we saw Diana Nyad talk about her Cuba- Florida swim. By now, I was a little overwhelmed. All these people, all these remarkable, inspirational achievements. This woman just kept on going. She had a team, they found a way and she just kept on going. How hard can that be in life? To just keep putting one foot in front of the other?

Susan Hayes asked “What makes you different?” Listen to what people say about you, believe in your strengths, focus on what you can do. Articulate how you are different- if you can’t do that, how can anyone else? Recognise your achievements, every day. What 3 things can I do next week? Her talk was well timed: I was reminded that I needed to think about me, not just be awed by other people.

Sadly, though, my head was full. My notes become even more patchy after that. I know Sheryl Sandberg inspired me to buy her book, Lean In but you’ll have to wait until I’ve read it for more deep meaningful insights.

I was exhausted by the day, but I’m exhausted by most days. Importantly, I was nourished and challenged. These events are for everyone. I’ll be back.