Christmas smelt of coal when I was very small, Curled beneath the eiderdown, light flickered on the wall. A tealight by the bedside, insurance just in case. On Christmas eve, a certain hope to catch sight of his face.
Christmas smelt of sausage rolls, upon a Christmas Eve. When it was dark and candles lit, their festive scent I’d breathe For that was when the night began, and he’d be here quite soon. A bell, a thump, a cloud of smoke; inside the living room.
I’d picture him amongst the stars, a map within his hands. He’d plan his route and plot the houses chimneys in each land But now I think he may have found a warehouse in each town, And make TV appearances when funds are running down.
His cheeky rounded cheeks and his bristly fluffy beard, His soft and round red tummy, never changing year on year. In my childhood, Santa had no socks from Tk Maxx, He didn’t carry ipads and hair straighteners in his sacks.
He took delight in filling socks with oranges and sweeties. And no-one mentioned tooth decay or early diabetes! He ate enough mince pies to keep weightwatchers very rich, But I could never see, his tummy pop a single stitch.
And if he drank the little whiskey on each little plate Would Santa not be very drunk? Or least of all quite late? Would he not muddle every present on each waiting hearth? Creating chaos in his fluster. That would make me laugh.!
He’d maybe just decide to see the ones who saw him too. For magic only happens if you first believe in you. However, he still does it, whether Amazon or sleigh And even if you’re always grinchy, park it for the day.
Nothing truly wonderful can ever be explained. Santa is who Santa is, and lives in all our brains. Hang your hat on someone good, you might just be surprised, And one day you’ll wake up to find a bite from your mince pie.
I have spent quite a lot of time looking at clouds recently.
Either through a doorway at dawn or at dusk when the spectacular paint box of colours and shapes sploshes across our patch of sky. Or sometimes from the inside of a wheelchair as I get trundled on a too- far- to-walk-path or as passenger in the car, I have been awestruck by the never ending capacity for the fabulousness of clouds.
Fluffy snowy cloud mountains hovering on the rooftops of the town, volcanic explosions backlighting the gloom of greys creating clouds of such density you surely must be able to ride on one. Dramatic inky washes, Turneresque pastel streaks of wonder, explosive fiery bursts splitting their intense vibrant blue canvas. We paint the skies with our eyes.
I’ve always loved skies, like gazing at the sea, their vastness make us feel tiny, our thoughts less important. Ironically being mindfull makes our minds less crammed full of clutter.
Watching the clouds pass through the sky I focused on my breath. It hurt to breathe. The week before quite suddenly I hadn’t been able to. After a week of feeling quite strange, a day in A and E, and an extra unexpected ambulance call out, it turned out there was a problem with my lungs. It looks like it was a blood clot. It was extremely painful and frightening.
Quite literally all there was to do was put one moment in front of the next, trust and focus on my breath. It hurt to laugh, to bend down and especially to breathe in cold air. Several times I almost blacked out going outside. In these moments we cling to those we love and the skills we’ve gathered . And trust that we know it is temporary.
I have been reminded.
As someone who is limited by mobility, I use my time and energy differently to a lot of other people. Rising early, using that burst of energy, keeping extra warm, scouting for disabled parking spaces close to the shops or the beach. But it is the world we are used to. Accepting new levels of limitations is another layer of challenge. Accepting even more help is even harder.
But like the skies that change, so too do our needs and our strengths. When there is no choice but to come fully home to ourselves we find we had been patiently there all along. And no amount of illness changes who we are.
These last few months have been ( again) fairly isolating. In a time where nothing is permanent, it can be tricky to hold onto the walls. Your feet need to be firmly on the ground at least somewhere, even if it is just a springboard to travel from and to return to , Staying true to yourself without any of your belongings, with your normal clothes or reference materials with books or tools and equipment; creates an opportunity to pare back to who and what is most important in your life.
After the start of the year, crammed full of community events and time with friends, choirs and art groups in Scotland, these last six months have felt frustrating; of time moving slowly, or time not being filled with our planned version of events. But when time is standing still second by second, we are offered a revitalised appreciation of having achieved in both large and small ways.
Take a breath
It was a summer of getting to know the area, enjoying the warmth and indulging in the odd treat here and there!
Autumn sauntered in with her rich fruity tones.
The zoo continued their daily antics. Bumble and Bonnie the guinea pigs, Max and Molly the cats and Horace the flat-coat retriever. Bear is now living somewhere new with more space and freedom to be his wild self. We will always love you Bear x
A few months shuffling about in one small chalet….
To a larger one …
The girl grew as they are wont to do…
And much Art and Poetry was made
Keeping up with friends by post has been invaluable. Online classes and weekly galleries can be seen on seasparkle.org.
Once a week office space waiting for the laundry!
Remembering every day what makes us happy, even if we have to wait a while…
Sudden illness, a change of direction, a change of pace throws us, We expect it all to be back how it was. But life can’t ever stay the same.
No matter what that looks like for each of us
It can be cathartic to become unwell somehow. I don’t say that flippantly, and I can only speak from my own experience and those who I have spoken with.. But, occasionally we are blessed with an opportunity to gain insight into what is real and what is snake oil.
Unable to catch that last bit of breath, a series of strange little coincidences balanced the universe again. There was a peaceful inevitablity. I just had to not laugh too much. It hurt.
Maybe, the universe took over?
I can breathe a little easier now. Yesterday my daughter made me a delicious dinner, after my first foray out in town walking a few hundred yards. We shared her cheesy chips. We were simply in the day.
It is time to get cosy
Tomorrow will happen regardless
There will always be clouds.
We must just look up.
Have A Fabulous Christmas, stay warm, stay positive and stay in touch
Autumn hides the cobwebs just as spring brushes them clean;
Subscription to the promise of a new you yet unseen.
Starting fresh sounds simple, leave the ghosts behind.
Clear the debts from credit cards, from lovers, heart and mind.
Open up the blinds again, paint the rolling view,
Truly understanding what it feels to know your you.
Hold your nerve a little longer, time is still at play
You got through the hardest part, first few steps, first day.
All the courage you require is curled up in your heart,
Every move in this game now awaits your hand to start.
Who could squeeze their life inside a tiny little room? Make their food with dolls house plates, a bucket and a broom? Trust in friendships lasting from another place inland Feel that even far away, their hands are in your hands?
Looking past the clutter, seeing what’s beyond. Pushing through the brambles to the lilies in the pond. There’s a view beyond the spot we stand on in the rain. There’s another path beside this bumpy, strange terrain.
Keeping safe your mindset when the noise is getting loud, Standing still and centered in the roaring gush of crowd. Slowing down each racing breath, finding space inside, Moving air to crushing lungs where fear is trying to hide.
Starting life in places new, without an anchor firm, Centres you from deep directions, ones you’ve yet to learn.
Sometimes taking one more step beyond our comfort zone Further than we ever dared, far away from home;
Distils every drop of courage, cleaning jewels of fate Suddenly where once were walls, there’s an open gate. Suddenly where once was distant; brush it in your hand. Suddenly no longer dreaming, walk on soft green land.
Take this moment look around, all the steps so far, Nothing vital left behind, perfect as you are. Friendships travelled with you, words and thoughts and line, Breathing slowly when you feel, nowhere close to fine.
Every gloomy hurdle, every battle won, Finds your light the brighter, closer to the sun. For every moment conquered, everything you feel
Shapes the life you’re made for, every dream made real.
We celebrated five years in Skye Blue house recently. Five years in St Abbs. Five years of watching my daughter turn from a child into a beautiful young woman.
Five years of furry feet, blue paint, furry feet in blue paint, and repainting blue paint before furry feet go back outside and make blue paw prints .
Five years of weathering the storms. All kinds of storms.
Five years of isolation. In the cave on the cliff in the wind, five years of intense Artwork and writing.
Five years of healing. Five years of waiting for the wind to drop. Five years of waiting to hear from rheumatologists what the body knew already; that this climate often makes your condition more painful. But five years of the best tonics, moments lost in singing, laughing, planting and growing and creating with, and for others.
All journeys create possibilities, for friendships, opportunities, detours and adventures. On ours here, many have been shared in stories online, and turned into poems and illustrations. Best of all has been the friendships grown through teaching and sharing in Art, with our choir buddies and drama buddies , friends who will now last a lifetime. Friends who leave precious memories.
Singing with the Echo Choir for the Queen’s Jubilee
Our home has undergone a radical transformation from it’s old self. A Fireplace was put in, thank goodness, as it saved us when storm Arwen hit. Although not much else was saved. A caravan upturned, blew its windows, took its contents and spewed them back out, Christmas gifts, vintage china and sewing supplies landed all over the garden whilst two shed roofs were ripped off and trees disappeared. A home here, was going to be interesting, little did we know it would involve a brand new skillset.
Cooking for a week on the hearth
Walls have held murals, garden stones have become colourful pathways, fairies hid in corners, flowers bloomed and Art was made in one of three stripy beach huts. Very few months, even in Summer, stay warm consistently, so when it was good weather- all outside jobs had to get done at once!
It may sound far-fetched, but the climate impacts hugely on joint pain and arthritis. Something happens inside the bones, inflaming the pain, pressurising nerves, slowing blood flow. When temperatures drop even a little, when air pressure changes, when it is both damp and cold there is a shift inside, almost like the body knows it must protect itself from unnecessary movement. Walking, bending and getting out of bed becomes harder, fatigue (annoyingly) wins out just when you’re having fun. After about August, there are less and less usable hours of the day (in the North!), and this means that from late Summer onwards, a more insular lifestyle once again looms because you feel cold. Needing more rest, (no matter how much you do to combat symptoms) , winter becomes a necessary retreat.
Positivity becomes a necessary armour, a way of life to balance the enormity of this struggle. Certainly some days are easier than other days, but the common link for most sufferer’s wellbeing is warmth.
Every year, in this cycle, there is a time portal where new ideas can become new realities. Those – keep – you-awake-at-night- ideas that might, seed and grow into real flourishing, exciting, life enhancing adventures. Activities that if you try really really hard can be organised and achieved whilst the sun is out and the bones are a bit less creaky. This is, on average, for us here, three or four months. ( I know this because it is how long the heating isn’t on full) Perhaps only a few days of that time are really warm.
When you finally feel like you.
This time pressure is both exciting and utterly crazy. It makes it impossible to plan things around the year, because there is no pacing. Adrenalin works all the harder for completing projects in warmer times, ( think what you’re doing right now, what your days are like in this sun.) For most its a time to lie on a deckchair with a good book, or avoid the heat altogether. If cold is the enemy, precious hot days can cause an ironic over exertion and subsequent fatigue. (This can also appear that you have no mobility problems, and impact on the support you need) If only that were true, as you crawl into your bed while the day is still light and the birds chirp happily; but at least the chair is painted and the pots are de-weeded.
Nature’s paint box on a sunny Day
Last Summer we considered a move to a warmer climate. Our road trip adventures were planned for months, and we manged two long, long journeys to the South of England and back again with carloads of belongings, and an assortment of animals of all shapes and sizes. In case you missed it, here is a link to come back to.
We needed a lot of belief in what we had planned. The countdown began, the boxes packed, the maps unfolded. Post Covid, we were all stepping gingerly into the unknown.
But, the best laid plans…. Just when you think life is going in one direction…
For reasons best left to history, and after a lot of deep breathing, praying and motivational speaking by a too-wise-for-her-years young companion…….
Our journey then, ended where it began, back home . (which now, thanks universe, we appreciate!)
Skye Blue House had a little more work to do..
We squashed back into the car, all seven of us, two car loads in one, all the paws and madness, and drove back to Scotland after arriving the night before. With no school clothes organised, she started back the next day, and we crash landed into life as we knew it . I set about unpacking the house again, repainting the walls, throwing energy into teaching my lovely Art classes and spending time with those we love. We were and are seasoned pros at getting on with life.
In these last couple of years, we have had the fortune to know and care about such lovely people.
So much artwork has been created, shared, and inspired us all to keep going. And we will continue to do this remotely and together online throughout the Summer and beyond.
These memories and connections are a part of something very special, and sharing artwork on our seasparkle site has created an ever expanding exhibition, no matter the experience or theme.
This little village holds its magic if you know where to look.
A bounty of ideas for any creative
During this last year, we have all learnt so much about our own resilience and ability to just cope. In life, it is often very difficult to gain approval from everyone, or move forward without having a consistent network to support you.
But the greatest thief of living life is fear, even if it comes from a place of love. Often we are numbed into a paralysis not only by our caution, but from those around us. And sometimes, we just got to trust those instincts. And the ones who have been there all along.
I know … she’s taller than me now!…..
This time we are feeling the fear and doing it anyway. It has been a long time coming, this journey of ours. Freedom to seek out the sun and find our true colours. Freedom to explore and take what we need to where we choose to go.
Everyone is ready…
And after months of planning, this is Our Big Adventure – part two..
In a few moments time, we are going on another road trip.
For weeks we have been living like students surrounded by bags and boxes, with ever shrinking space inbetween.
The juggling of Life and Art was a bit of a challenge! Making stuff takes… well a lot of stuff….
As well as the concert, there was a fashion show
An Exhibition
Art classes
A Craft Fair
Three Art Workshops,
A Drama
A Book Illustration
And a holiday to Turkey
All in the middle of the chaos.
For the zoo, as long as there was cuddles and food, life remained the same in the nest. The house might have been a Rubik’s cube of boxes and huge bags, and the space between shrinking, but food and love still got delivered.
The future is an exciting blank canvas, thoroughly primed, brushes at the ready…
The caravan left yesterday to its new home…
We are getting the maps out..
The excitement is mounting…
Books and Art and all that “crap you’ll have trouble ever shifting ” is safely sorted, and in storage thanks to months of hard work, patience and help from one or two angels😇
.
Six months ago all of the above were just ideas, conversations, which became plans. A lot can happen if you believe it can !
Every scrap of kindness will be with us always.
My driftwood gate made by my late friend Donnie.
Paint may fade but memories won’t
A few goodbyes with our favourite people before our journey begins.
And now.. before the next chapter starts all that’s left is to sprinkle a little glitter
and thank the universe for all that it has given …
See you on the other side!! All our love, Liz and the zoo xx
Many readers will identify with the painful to watch Versus Arthritis adverts on television . Asking viewers to pledge support for those in severe chronic pain. For those suffering a myriad of fatigue inducing symptoms. I imagine these adverts are met with a variety of responses. Each according to life experience. If illness for you has come to mean an easy, specific and named condition, with a sociably acceptable set of treatments, this no-mans land of auto-immune symptoms will make no sense. Those of you with friends or relatives who have arthritis , may become interested, hoping to gain insight and understanding.
Perhaps you are untouched as yet, and believe the afflicted to be exaggerating. Perhaps you feel a few twinges and you have already begun to feel less mobile, a little weaker, and not so certain your g.p. understands your needs. How much worse does it get? What happens then?
And for those affected personally with a degenerative condition, a body that is consistently affected by weather, a slave to daily fatigue and is aging years too early; maybe your heart breaks just a little bit to see that pain, because you know it yourself and live through it every day.
Living with disease and pain is exhausting. And debilitating in more ways than just your illness.
Bad enough are the daily rituals of pain-easing strategies and positive, life affirming reminders on the fridge, when you can’t now reach the bottom shelf, but sometimes more crippling is the lack of understanding by many employers, friends, colleagues and even family of how to live with and even love with the cards you’ve been dealt .
Unfortunately, it is often those closest to you who can lack belief in the validity of your pain, or why you can’t join in family activities. Employers might lack the understanding of how to incorporate chronic pain into a hard working professional’s life, and therefore write them off as lazy or ‘milking the system’.
A lack of effective financial support, twinned with a lack of information to guide the affected in the workplace, can create a lack of respect for our still beautiful and resourceful bodies and imaginative minds that still desperately want and can give something valuable to the world.
Do you tell ?
Ironically I often see people desperately trying to prove themselves still able, by achieving double the output of creativity, in half the useable time of an average person; before weariness once again steals their daylight hours.
And although we educate our children in schools, in a plethora of differentiated ways, owning our healthcare needs as valued adults seems to be a different matter. In my classroom for example, a movable trolley with wheels, spaces between desks to navigate my sticks, an ergonomic chair and access to the lift would have saved my early retirement .
Without support to maintain a normal work/life balance and earn a competitive salary, those with a chronic condition are often forced to rely on disability payments or p.i.p.
This does two things. It labels people as permanently unwell, and keeps them in a state of limbo. As an ‘ill’ person , they might feel highlighted under their disability or condition before they are themselves, their old, ‘professional’ self . It can be incredibly difficult to convince the world out there ( and ourselves) that you can be both a, suffering from a degenerative condition and b, you still want to be, or are able to be the same or even better version of YOU.
The second thing that disability payments (or the equivalent) can do, is to minimise the quality of creative life you might get to live after your illness. An artist wanting to make money after being struck with a chronic and degenerative condition had better make A LOT of money at once or not at all. Because sometimes, making small amounts can cause more hassle than it is worth. This is of course, ludicrous. As a consequence thousands and thousands of amazing people who still have incredible creativity to offer the world, are stuck. Stuck earning too little to live on with the usable hours of their day or week. Having to declare any profit on a piece which might have taken months at an hour a day and then potentially losing financial support because they might be deemed able to work.
Sadly, sometimes, others are stuck being dependent on caregivers at home who might not be treating them properly, either emotionally or physically because their illness is not taken seriously, or they become stuck in a cycle of believing that because of their illness, their life force has also diminished. As parents our needs often come last on the list. But truly, unless you take decisive action to get as well as you can, your dependents won’t have the best of you, the rest of the time. Your life force is still there . It just needs a nap.
When you feel in pain, are tired and your va va voom has disappeared, it is almost impossible to tell yourself it will be OK. Prepare a box of nice things, a book, whatever food you love, new pj’s etc. Wrap a couple of presents for yourself. When the day gets really rubbish it’s there as a gift. The white knight might come charging, but in the meantime be your own.
When you live with chronic illness, you are often looked over as unsociable or underachieving because you can look well. That is until you move, or bend or try to walk.
Then you’re still at the fence
For many people it can put an end to their chosen careers or dream path. Not only because their energy has diminished but because others see their failure and think it is best for them that they give up their crazy ideas. At best this might be justified as being for their ‘own good’. If we see pain, we often feel the need to just stop, not continue and give up for an easier life. But sometimes, your continued belief in your dream scares and intimidates people. How can you still have the audacity to do a brave thing in your condition when they haven’t? We know people react out of love or fear. That’s their fear talking. There is no room for a different, braver version of you. And the longer you’ve been ill, the wearier you will be. It wears you down. It takes an enormous amount of resilience to look past your pain, or your illness, the negativity of others and see yourself still sitting there.
Of course, there are other reasons that domestic situations might be difficult. If you need help with more specific issues click on my blog here :
Imagine a kindly hand in yours, telling you please be brave. On the journey through pain management and recreating a new life there are so many blind alleys to go up , promises and pastures new, magic fixes, gurus, and snake oil. Or you could drown in daytime tv and wine, buy new outfits you might wear if you could only bend your arms a bit more. Or like most of us, swing from one extreme to the other, like a giant pendulum until you rest on where you’re meant to be.
In the heart of it all is your key. The only key you need to navigate and know what you need. How to eat, what to wear to be comfortable, what makes you happy, what you have to offer and who you are, You.
On my journey to this page, I have battled heads of teaching departments, g.p’s, psychotic ex husbands, surgeons, solicitors, the weather and less than sympathetic relatives. But the biggest battles have been with the deterioration of a pandoras box of connected diseases- glandular fever, meningitis, arthritis, endometriosis and lupus. All of which have ebbed away at my energy, my career and my ability to live a pain free and operation free life
But. Those battles, the lack, became my drive. For my sense of self as an Artist, a single mother and a human being; I kept putting one foot in front of the other and vowed to create something every day. To that end for ten years since Escaping, I have written 100 blogs posts, ( today is my 7 year Blog Anniversary)❤ written 40 poems, drawn 200 illustrations , taught hundreds of community art groups, supported individuals and groups in the pandemic, completed hundreds of drawings, paintings, prints, cards and products. And I don’t think I’ve even started.
And I have learnt
Our bodies are telling us loudly what we need. Keep moving towards those things. Keep communicate those things to your doctor.
Know your rhythm. Completely be ok with it, even if the rest of your tribe think you are bonkers. Today is Happy day. Happy day is the first day of the year when there is enough sun to be outside for more than five minutes. I’ve waited six months. The cold is my kryptonite and grips my veins until I cry. So I did too much today. And it was worth needing to rest all afternoon. (which is often my rhythm anyway) At least there was Achievement too!
Accept your uniqueness. Having a chronic illness of any kind can feel like a ticket to a club you don’t want to be in. Let those that love you know what it means and concentrate on what you can do.
Accept help without feeling like you are helpless. There are plenty of positive ways to share skills.
Let go of activities taunting you because you can’t do them anymore. Who needs to paint on rice anyway?
Eat your greens, take a shed load of vitamin c and keep warm. Wear lots of thin layers and use heat patches.
Don’t be alone in a world that has become so isolated, but has so much potential. If you are housebound, volunteer as phone befriender for the elderly, find a local group or if you need support in your pain, locate a pain clinic. (These are groups set up to help find ways to manage and understand pain, and meet other people)
Rest. When you need to. My dog and cat now get grumpy if I don’t, as we all pile in a heap together.
Talk to someone if it hurts, if you’re sad, if it’s a bit rubbish. We all need that. And they might need it too.
And obviously, the most important thing is to make some art. Or create, or sew, or cook, or felt, or knit, or grow tomatoes or ANYTHING you can see taking shape outside yourself that expresses joy. Re-wire your brain in this meditative way as often as possible, listen to story tapes, not news, music not noise.
This drive to let the work blossom gives a perspective to my physical pain, and allows me to empathise with others in the same situation. Working together has been my joy. Without the groups and individuals there would be no Liz at the Beach Hut. We inspire each other. Being alone in pain is no use to anyone, but being silent amongst friends is a blessing. Press the link to the next page to see a selection of some of my own work, some of which was achieved on crutches (five years) , with a face full of skin cancer stitches and with a combination of early onset arthritis and lupus.
It took my health providers years to finally unpick my particular selection box of goodies, and along the way, I missed school exams, college terms, weeks of work, almost a lifetime of fatigue, joint problems and pain and digestive problems. I have had 18 operations and endured a ten year fertility battle with multiple losses. It took the longest time, but I refused to give up. It was simply because I wasn’t the norm, an easy fix, and I didn’t always look ill. When it was suggested I take early retirement because I was on crutches, when I wondered if this body would stop me moving forward, I let momentum and trust take me to the next destination. It has taken me far longer than I imagined it would, as a healthy twenty something leaving Edinburgh Art College. But I now know, that my journey to get here has been rich and rewarding, a parent, a teacher, artist, writer, and a person who exists.
