What matters

We are pushed through life to think about what matters, about how much money we have, how much stuff. We ask kids what job they want to do from being so young and as adults, its the question you ask of a stranger when you meet. We live in a very materialistic world where our worth is based on how much we have.

But today as I lay in bed feeling ill and sorry for myself, I was thinking about what actually matters. It is, of course, people. Our relationships with others. Our family and friends. We all know this but sometimes it feels like we forget it in our busy lives.

Today, my hair is matted and greasy. I’ve had a tough few days with what I think is a partial blockage of my stoma. This is on top of the daily pain I have had every day since my surgery in February. And I was thinking back to my recovery from that last operation.

At my lowest when I had nothing left, no energy, pain, failing kidneys, the thing I had that mattered the most was an incredible team of friends and family around me. It didn’t matter what clothes I wore, what car I drove or how much money was in my bank. What mattered was the kindness and love of my tribe.

My friend Hannah heard from Timm that I had been upset about my hair. After three weeks in HDU and on the wards unable to wash it, it was greasy and knotted. I’d had it tied on top of my head and it was matted and dirty. She came in to visit me and brought supplies! Shampoo, detangler, the works. And she helped me into the bath in hospital, and washed and brushed my hair. She wasn’t embarrassed or put off by my bruised, swollen and bleeding body. She didn’t judge me or look away.

She helped me undress, get in the bath and was so gentle and loving. I cried as she took my bobble out and my hair was so matted it barely moved. But it was OK, she said it was going to be fine.

In that moment, and now looking back on it, I knew how lucky I was to have her and other friends who were there for me.

There was so much love and support. Friends who just came and sat by my bed, those who did laundry, who cooked for my kids and took them out for days to take their minds of things. My aunty who trawled shops to bring me several types of yoghurt because after 3 weeks of not eating, it was the first thing I fancied! My husband and friends who found stocks of long ice pops in February so I could suck on something to soothe my mouth when I couldn’t eat. More people than I can name here came to me in my time of need and were just ‘there’.

My friend Tania who came and massaged my hands and arms because she instinctively knew I just needed some human touch.

My friend Caroline who listened to me weep and tell her I couldn’t get through this. Who just cried along with me, told me it was all shitty but we’d get through it.

My friend Sarah who stuck sweety red laces up her nose so she looked like she had an NG tube too and made me laugh. Then went home and looked after my family.

My kids who were terrified. I will never be able to make it up to them. They visited and were scared. Scared to touch me, scared of the tubes and wires. They were and are troopers who have seen more hospital wards than any child should.

My husband. Who I dont even have the words for. He is everything. He never gives up on me, never loses his patience, and is always there. 12 hours a day he sat by my bed. He’s seen it all and been through more than I have as I don’t remember half of it.

I suppose my point today is, that I am incredibly grateful to my squad, but also that people matter.

Be the kindness you want to see in the world. Cherish the ones closest to you. Nurture your relationships and love hard. Say ‘I love you’ to the people you love. Pick up the phone and call your friends. Give love out into the world and it does come back to you.

Life is tough this year, we are all suddenly faced with illness and death in our day to day lives. But as we head into Christmas and all the pressures of spending and buying expensive things, remember that the most important thing, the thing that matters the most are the people you love.

Peace and love

Sam xx

40 things to do before I turn 40

Next year in June will be my big 4-0, which seems crazy as I still feel like I am 18. I can’t believe it, in my head 40 is how old my mum and aunties are and so to be reaching that age myself doesn’t feel real. I started thinking about what would I like to achieve before turning 40? So here is my list of 40 things to do before I turn 40.

The way that the world is right now means we have no idea when life will return to some sort of normality and so my list will be so much more local than it would be otherwise. I would always add travel to any to do list as I absolutely love going to other countries and exploring the world. But I just can’t see too much foreign travel happening in the next 7 months!

Life with illness

After the past 7 years of surgeries and illness, there were times when I didn’t think I would even make it to 40, so I don’t begrudge getting older. I have realised that it is a privilege. I’m also really lucky that I have had some amazing experiences in my life. I have travelled the world and been to India, Australia, Vietnam, America and more. I have been to lots of festivals, got my own radio show and been on TV. I have done talks about chronic illness, disability and life with an ostomy all over England, Scotland and in Germany and Spain. And most recently, I got to be on the stage at the Crucible in Sheffield when I interviewed author Helen Mort which has been a lifelong dream! I also just started university at the age of 39 so I am definitely up for continuing to tick new and brilliant things off my list!

I don’t say these things to brag, but just as a reminder for myself that even through years of unbelievable difficulty, I have had some of the most amazing experiences.

Experiences not things

What I have learnt so far in my life is that experiences are so much better than things. I don’t care for having the fanciest clothes or most expensive brands. What I do care about is the time I have got to do wonderful stuff with amazing people. I don’t need a diamond, just give me a night in eating dinner with my favourite people!

So I am doing this list as a little nudge to me to make time for the things that make me really happy, here we go!

40 things to do before I turn 40

1 Do the North Coast 500 in my campervan with Timm.

map of Scotland with North Coast route planned out in red line

2 Go wine tasting! I love wine and I have never actually been wine tasting!!

3 Go kayaking – this has been a dream since a few surgeries ago when it popped in my head and I couldn’t stop thinking about it!

4 Get my kit off for a life drawing class

5 Start doing yoga

6 Take a solo trip – I have been a mum since I was 19, I am always so busy and I would love to go away on my own for a short break.

7 Get another tattoo

Sam Cleasby sat backwards on a chair laughing

8 Raise money for a charity

9 Go to a cookery class and learn to make something fancy

10 Read my way through a ‘must read’ book list

11 Go in a hot air balloon

12 Climb Mount Snowden – we visited last year but I was unable to even walk very far as I was so unwell and awaiting surgery.

Sam and Timm Cleasby in Snowden Wales

13 Go on the cable cars at Heights of Abraham

14 Visit Brighton – 40 years and I have never been!

15 Go skinny dipping

16 Write a handwritten letter to my closest friends telling them how awesome they are.

17 Have a family photo shoot

mum and three teenage children photo shoot

18 Bake a rainbow cake

DONE! It was delicious!

Rainbow cake

19 Play hide and seek in Ikea

20 Make a dress from a pattern

21 Get over my fear of frogs

22 Say yes to everything for one day

23 Learn to make the perfect cocktail

24 Learn to jump in the air and click my heels together

person jumping and clicking heels together

25 Get through my first year at university!

26 Build a giant den in the living room

27 Get onto the Shaw Trust Power 100 of most influential disabled people in the UK for 2021. I was on it in 2018 and would LOVE to make the list again by helping people and making a difference.

28 Ride a zip line – we were booked in at ZipWorld a couple of years ago but had to cancel it twice due to surgery. I was gutted but I would love to actually manage it now!

29 Play a game of paintball

30 Go on a boat trip

Sam and Timm Cleasby on a boat in Lanzarote

31 Watch a Formula 1 grand prix in another country

32 Be an extra in a film or TV show

OK, so it wasn’t a big film, but I was in my husband Timm’s university film!

33 Learn to play one full song on an instrument – I would love to have a go on an accordion!

34 I have avoided travel based things as we have no idea when we will be able to do this again, but I will add in Visit Iceland!

35 See a whale in the wild

36 Sleep under the stars

37 Sit on a jury. I know I have no control over this, but it is something I have always wanted to do!

38 Get in the Guinness Book of Records! (I did this once, the most number of people dressed as Superman) but would love to do it again.

39 Be in a play – am dram here I come!!

40 Get to 40 – my health has been such a difficult barrier for so long, there have been many times when I didn’t think I would survive and so my main aim for my 40 things before I turn 40 is to just actually reach the age of 40!

I will come back to this post and hopefully cross them all off in the next 7 months!

What would be on your to do list?

Peace and love

Sam xx