Monday 14 December 2020

A Christmas ‘tail’...



Robbie 


The Christmas tree and other decorations are up now. I’m like a kid, I love stirring but the tree with its lights on all day! I’m ambivalent about Christmas, especially this year, but I love the connection it brings normally. The house full of sparkle and anticipation ( with a serious sprinkle of anxiety).  Back in the days of having young children, my sister and I alternated venues each year. The year at her house was always wonderful and the year at mine a lesser joy for me ( 9-10 people not just for dinner but for at least three days is a project in itself)  but nonetheless lots of rich family time. OK time has formed a rosy hue around it. I’ve forgotten the moaning, the tense times, the money worries, the wondering, have I got enough, have done enough?

But the really special years have formed the rosy hue. The cousins all togther working with the Lego and engrossed in their task. The board games full of stories of my Mum generally saying something outrageous! 

One year we did something something I’m a bit ashamed of. We got a puppy at Christmas. ( don’t try this at home...)  We were looking for a golden retriever pup and this family had a litter and they were ready them. I swear to you it was the Christmas scene from many a Christmas film . It was Christmas Eve . Our plan was to go to church that evening for the Watchnight service. And after that collect the puppy.

By 8 pm we realised that plan was in danger, the snow was falling and we were getting dangerously at risk of being snowed in. We lived at the top of the hill. Above the snow line and it had been known for the children to be wrapped up in snow gear for school and once we went down the hill there was nothing. Oh MUM we told you, the cry. So was this the scenario here? We phoned the family we were getting the dog from. Yes it was real, the snow was piling up there too.

OK, the children knew nothing of the dog and having got this far we wanted him to be a surprise. Time for bed we cried....what? Not yet. I want to ....Nope, tomorrow is Christmas and you want to enjoy it , don’t you? Off to bed ...spit spot! ( Mary Poppins was a Christmas must). They gave in and off they went with favourite books to read and old slippers set aside awaiting their replacements. 

My Mum was also in the dark, only my sister and brother-in-law knew about the pup. And Fruin the cat didn’t know his life was about to change. We set off, the baby sitters were rather baffled that we were heading into town at this time of night.  We arrived and there he was. A ball of fluff so young we felt scared to take him out in this cold but honestly with the snow still falling we had no choice, by tomorrow we would be unable to get out. So we cuddled him in, tucked under my coat, a million instructions and the promise to let them know how he was.

We moved up the hill with excitement entangled with anxiety as the car went into the odd slow skid.But fortune favoured us and we got home. The lights were out upstairs and my sister and brother-in-law came to meet us at the door.They smiled as Robby ( as we came to know him) emerged from the blankets. We opened the door and presented him to Mum, she cried when she cuddled him on her lap. This was only the second Christmas since my Dad had died in the November just over a year ago. In truth we all were dreading it as our grief was still raw at times like this. So that Christmas it became , ‘where’s the pup’ rather than trying not to serve up a plate for my Dad as I had done the previous year. He stole all our hearts that year.but frankly it’s not a good idea to get a dog or puppy then. The kids wrestled their presents from him, he wee’d on lots of gifts left lying about, he hung from the tail of my sister’s dog. She was a beautiful Belgian shepherd cross rescue dog with a tail that was made for hanging from. But he lifted all our hearts. The snow lasted on the ground for two weeks. But eventually spring arrived and we managed to move to a more normal routine. He was so easy to train, a lovely warm slightly daft, loving dog. 

And he was definitely for life , not just Christmas. We had him for a precious 13 years. Thanks for those memories Robbie. 

Sunday 15 November 2020

That’s so 2020



 So this weekend has been really enjoyable and I’ve hardly left home. We had a fun firepit evening, with our daughter and our friend,  having curry and great chat. We laughed and that was so welcome. The next evening we had virtual pre dinner drinks with friends ( the drink wasn’t virtual you understand!) on zoom. It just made the evening and we avoided politics and pandemics mostly. It was almost normal, or maybe I’ve just forgotten what that is?

Then today we met our son, daughter-in-law and grandson in the Botanic gardens. I stepped outside onto my mobility scooter armed with winter woolies and realised just how mild it was. We still have our heating off during the day, unheard for this time of year in Edinburgh. Cue conversation about climate change and an ominous hint at what that means for years to come. The autumn leaves were glorious but no longer on the trees. Their glory is fading and it’s hard not to think of winter edging forwards.

In the distance Edinburgh castle sits caught in a heavy dark cloud. It was morning. Edinburgh suits winter. Those medieval streets are surprised by the light. Days of the haar muffles the life of the city and those behind the doors. It’s lived through the plague certainly but their ways of handling pandemics were unacceptably grim.


I turned around looking for the family and there was a large yellow inflatable monkey attached to the side of Inverlieth house, in the centre of the gardens. It was raining. Of course. You understand this is the year that nothing surprises you any more.  We continued our search in the rain and there they were. Davie on a squirrel hunt. The squirrel runs off in the way our cat does when he runs towards them. Grandad, Grannie he says and gives us a hug. How precious these hugs are. 


There were flowers, fallen leaves, robins, bold crows and rows of winter vegetables and herbs to entertain on our walk in the rain. An occasional ride on my lap on the scooter is a highlight for Davie and I: his pleasure is the scooter lights and horn and mine the hugs. 

We sat in the rain watching him roll in the grass which was now mud. Oh how 2020 this is: sitting beside an inflatable monkey, stealing as much time with family as possible and if you get wet take your hood off and roll in the mud. It could be a wise saying on gift card! 




This week I’ve been reflecting on hope. The talk of vaccines of course has contributed. It’s what’s been missing isn’t it, during this second wave of the virus. No rainbows or applauding with your neighbours, just hard work from health and care workers who themselves are most at risk of the virus. No just an expectation that they will be there for us. There was no furloughed summer for them of course. Who needs hope more than they do? It will be all over for Christmas exposed as the lie we all knew it to be. 

So hope has to be found in the everyday. One of my most valued learning from studying mindfulness is the importance of being in the moment. The only thing that is certain. Being caught in the past causes low mood and depression and ruminating on the future can bring on anxiety. But staying in the present allows you to see the beauty in the fallen leaves, the moody Castle and the friendship that brightens our lives. And especially when we are able to capture the love and occasional hugs from family.


The craziness, fears and losses of 2020 has certainly reminded us of what is most important. That’s so 2020. 

Saturday 31 October 2020

A Grannie Rocket?




 A side effect of spending time at home is seeing what might be done in the house with some investment. From being a young adult in our first home we’ve always prioritised holidays over home improvements. And being busy with work and life and children etc I have always been easily distracted from what needed done. Even when we could only scrape enough money to pay the essentials we would still rather pack up a tent and head off. Also spending time with family was and is always the priority. So  redesigning dining rooms for example could always wait.

Until this year. 2020. 

Who knew what you could achieve with time, energy and money saved by sitting at home. So we’ve had a lot of boxes arrive, redecorating to arrange, cushions to chose and we have a completely different room. I’m delighted with it. Cara especially likes to lie on the sofa while I’m working at the table. It feels so bright and yet comfortable. The sofa becomes a bed if you want it too and at times I’ve needed to know I didn’t have to climb the stairs when I’m most in pain. 

My pain has been worse of late. I’m sure the added stress of the resurgent virus and the loss of not seeing and holding family is part of this too. Pain is a complex mix of the physical , mental and social context and who could pretend that any of those is ideal just now. 

So our final investment is a stairlift. I’ve given in to my need but to say I resent it would be to understate the situation. The cost of over £4,000 is the worst part. I know I need to love it now but that’s a big stretch for me. I do love not being anxious and in pain every night when I go to bed. I have also regained some mobility around the house. 

Koshka the cat is horrified by it, a machine too far for his cosy life. By contrast I’m sure Cara would get on it, if it got her to our comfy bed when we are not looking! My son suggested to his son that Grannie has got a rocket. A Grannie rocket! I have no doubt it will be a source of endless entertainment for Davie. Maybe someone can love it! A friend suggested pimping it up. Suggestions are welcome.....

I have got through breast cancer awareness month without thinking much about it or buying something pink. I just couldn’t open that box of fears which has been safely tucked away of late. We lost another friend to breast and ovarian cancer just recently. She had such a terrible year but held on to life. Her nails painted and ever glamorous at least for the outside world. She was so kind and welcoming to me 40 years ago when we met. She and her husband died within a month of each other. We’ve been grieving for them both. The rules of the pandemic have destroyed our rituals for grief and saying goodbye. We need new ones and we epspcially need human connection. I’m missing that so much.

I’m not sad to see the back of October. But what will November bring? 


Saturday 3 October 2020

Facing fears in October

 


Just one of those days when you want to coorie in. It’s already October with the vibrant autumnal  colours arriving so soon after a sunnyish September. Strange that it comes with the inevitability of more lockdown restrictions, pushing our heads a little lower. I’ve socks on and out come the boots again. A benefit of not really being able to walk any distance outside means your shoes don’t wear out. There you are, jealous now? 

October 1st, I was tidying ( oh stop...I have been known to tidy) and found my printout from the genetics department. No one expected it to be positive for a BRCA gene. BRCA2 with all the accompanying percentage risks. A 45%-85% risk of breast cancer. Well that train left the station and had a few stops along the way. Then I saw an article on BRCA2 and it dawned on me, it’s the start of breast cancer awareness month. A weariness settled over me. I’ve put the cancer to one side of late. I’ve donated my breasts and ovaries to the cause of ridding my life of that gene so I think I’m entitled to try to forget about it. After most cancer diagnoses I’ve had, I’ve gone up and down the roller coaster of denial, overwhelm, fear, then that unstable path to integration into my sense of who I am. The path is unstable because each spell of pain, of fatigue, of headaches, of coughs bring back the paranoia and the cold fear. I taught myself to control these impulses to seek medical advice. Because that could result in more fear. A bone scan, an MRI, a CT and off we go. A gnawing fear covered by the logical and usually correct claim that it’s nothing to worry about. But when you are in that scan and during the wait for results the fear sits like a dragon guarding the cave, knowing that if you find yourself in the grim  cave of cancer treatment, life will never be the same. 


Adding Covid-19 to the mix of health concerns means we’re distracted. In the week President Trump is in hospital because of Covid-19 ( if you can’t say anything nice, say nothing!!!!!......) the reality of the risk is clear. And our lives shift so quickly. Mine shifts in a wheelchair or scooter. I started to read about the percentages of disabled people who died from Covid and I quickly put it to one side. Another one to pack away, follow the advice and get on with life, masked and turned away from human connection. It’s so all consuming.

It has occurred to me that I might not notice any changes that would previously taken me to a GP.

Or to the breast clinic. Those late diagnoses with cancer and heart disease so easy to understand when we re focussed on trying to survive Covid with all its tricks. 

BUT it is October and breast cancer or any other hasn’t disappeared just because we want it to.

So here are the signs and symptoms of breast cancer, an early diagnosis is still the best predictor of a good outcome. 

Go well, stay safe and find a way to make a virtue of this aberrant winter. But we must still remember to bring our compassion and help to those who are taking the brunt of this vicious virus and who feel the cruelty of a state unwilling to financially protect its most vulnerable. My greatest fear this October is for them. 

Saturday 12 September 2020

The tentacles of Covid 19

                                                            Crail, East Neuk of Fife 
 There is a sadness in our home just now. An old friend has died very unexpectedly and he’s with us, in our desire to have said goodbye, to have hugged him when we saw him last. His wife is also very ill but the curse of visiting restrictions means we haven’t seen her at all. Will this awful virus never lose its tentacles on our so vulnerable lives. A friend dying unhugged or unseen is a loss unaccounted for in the daily tally.

Or a family member, locked down in a care home; again unseen and unhugged. Locked down, even the words make me shiver. And when the home developed a system to see family members, it was through a Perspex screen, accompanied by a carer and communication was through a phone. The similarities to prison life not lost on anyone. And what is their offence? It’s getting frail, older and to become the unseen; protected from viruses and hidden from life.

For a time the families’ rebelliousness meant daily meetings in the car park were allowed but now even that has gone. 

The virus is spreading and moving into the seasons of darkness, it feels like a new phase again. Another challenge to be faced. The loo roll mountains have yet to be gathered so it can’t be too bad, can it? Our city Edinburgh has escaped a festival bombardment this year, but still the tourists come with their big coats and rucksacks on, ready to clatter over our cobbles and stare up at the scenery, that still thrills me with it’s beauty. I’m so ambivalent towards them. I want to say go home, stop sharing your viruses with us. And yet I welcome their colour and chatter. At the heart of lockdown the city scared me with it’s closed, austere facade. An opening scene of a disaster film but the disastrous effects as yet still hidden in its empty streets. I fear a return to that and yet I wonder at those visitors so confident in their health they tackle airports, planes, taxis, hotels and bars. 

We however are not straying far, my boldest step so far two nights in my friends caravan. We talked, hid from the rain, wondered about the future and peeped out in the sun when we could. 

It was so enjoyable to have that time together but I noticed a need to be home as well as soon as our time was over. I just managed to climb into the van, so different from last year. My other grief this year is the recognition I’m getting worse. I ordered a stair lift this week. Grannies’ stair rocket said our son. I fear our grandson may be disappointed at the speed of this rocket.

Our grandsons birthday party lit up our world this week. In spite of a range of lovely gifts, a plastic ball and a bubble machine were what lit up his day. It’s the little things as ever that please.

And for us the ability to share it with him was the best gift of all. Holding those we love close is our theme just now and probably for some time to come. And like bubble machines and plastic footballs it feels almost as fragile. But as a wise doctor once said to me, there will be better times, especially if we recognise what and who matter most. 

Sunday 30 August 2020

Who knew it would be hugs

 



Who knew it would be hugs

that were our undoing?

Those taken for granted

moments

where we gather

to connect.

Our hearts meet

clasped carelessly 

and we feel

each other’s warmth.

Sometimes it’s more hesitant.

Is this Ok? 

The boundaries of 

our friendship are defined

in that moment.

Maybe a brief awkward 

touch of shoulder.

Or an envelopement

that secures a friendship.

A synchronisity of touch

that celebrates our affection.

Those warm embraces

restore a sense of equilibrium.

The family embrace 

that can say So

much more than

words. The clasp

a little longer

even a flutter of kisses

as we leave 

or arrive.

I’m so greedy

I often want both.

Give Grannie a hug?

I call with trepidation.

Mostly it’s a fly by

catch with a giggle.

These moments are

tucked away. 

A squirrled collection 

of connection

Of love.


Hugs

I yearn for them. 


Saturday 1 August 2020

No vaccine for compassion.

Up Arthur’s Seat in Edinburgh 


Today, in Scotland, shielding ends. If you are reading this in the future I don’t know if you can really appreciate the importance of this for some people. As I wasn’t properly shielding ( no letter for me) but being very careful, I’ve been a bit more mobile in the last couple of weeks. But I remain very cautious. It’s a bit like a slow motion Hokey Cokey without the fun. I’m back as quick as I’m out and I relax only once I get through the door. It will be so hard for people until they gain confidence.
I’ve lost some mobility, perhaps that would have happened anyway, but it’s making stairs harder. And so another bit of independence is eroded. COVID-19 is shaping the advice against taking holidays abroad. For us it would feel a mountain to climb to holiday abroad on our own anyway. We’re planning a trip to the north of England  to see my much loved sister-in-law and I’m fearful as the numbers slowly rise around there.  I want to parachute in and out again but I’m not sure that’s recommended with my spinal problem either! Let’s face if you’d never get me out the plane....

Life was complex before COVID-19 and now it’s shifted on another axis and we don’t know how it will end. Edinburgh has tourists again and even tour buses but the streets are changing as shops and restaurants close there doors forever. The untold stories of precious jobs lost and businesses  sadly turning into empty shells. Of course we will adjust in time but those of us who live through this transition will be most affected. Life as it was before is like a snowflake melting on our hands. We think of it’s earlier unappreciated glory as it disappears before our eyes.

As I look back on a time when I flew up and down to London so often, it was as familiar as the 27 bus, I know my life would have been so different with zoom to allow me to connect meaningfully, instead of life being lived through the fabricated lens of an airport. I would have bought less MAC eyeshadow and invested more in relationships at home. For people still worked that way, this lockdown will have been life changing. I would have been able to go to yoga and read more books. I would have had less long and often lonely evenings in airports or on trains just wishing that I was home.

But many charities like the ones I worked for, have lost significant income and some are even talking of redundancies so those benefits for people like me are coming at a cost to so many. It’s sad that changes that are enabling so many to have more balanced lives have only been realised as a result of a massive public health disaster. We see the digital inequality in our society widen and deepen the existing inequalities . Such divisions are unsustainable and cause another kind of public health disaster. If we look the other way when so much poverty is visible, I’m afraid to imagine what might be the impact.

Reflecting, as I’m writing, is helping me understand that my fear just now is not just for the virus  but for a further polarised society. So with earthquake style cracks opening under our feet, yes put your mask on and wash your hands but please let’s contribute to closing those cracks and open our hearts ( and willingness to pay tax or similar). Maybe the answer is to invest in universal basic income and universal services and make social justice a reality. This will take time but if we don’t start now, the virus will eat at the very heart of who we are as a nation or community. There’s no vaccine for that. 

Thursday 23 July 2020

Stars of lockdown

Koshka plotting...

And he won....of course 
I was on a zoom call earlier and the window cleaner was washing the windows. I was very spooked initially but then it got me thinking about some earlier days when I worked at home. It wasn’t the norm but that day I had a tricky call to make then a report to write and I decided that on that winter day I would work from home. The pets were delighted to have me there and I’d forgotten how much their need of attention was less than helpful. 
I decided to sit by the Christmas tree and put their lights on so I was lifted from the December gloom. I had my laptop balanced hopefully alongside Fruin the cat who would only settle on my remaining lap. 
Robbie the golden retriever finally went to sleep with a toy in his mouth ( it’s a retriever thing-it’s often underwear that’s stolen only to be presented to people who come to the door). All was quiet so I made myself pick up the phone and make that phone call which was too easy to put off. 
I steeled myself and dialled the number. They answered and so the conversation began.
I didn’t know the window cleaner was coming. 
I noticed him first at the end of the house. I held my breath, would the dog notice. Oh yes he did. 
He stood up and barked as if Count Dracula was washing the windows. The toy dropped out of his mouth with a clatter. That set off the grotesque singing Christmas tree. My sister bought it to tease my husband one year. Why had we kept it and why was it switched on? Any movement set it off, so to add to the mayhem of Robbie barking, the cat clinging on to me as I tried to get up and close the door, a tinny version of Rocking around the Christmas tree began at volume. My credibility was crawling out the door.....looking back I’m only glad it wasn’t zoom although some telling oaths may have been muttered! 
Then working from home was unusual, now it’s my life. But since lockdown it’s mostly  with video. I know we’ve all learned the smart top, comfy leggings routine but managing the pets is a whole new level of difficulty. Back in the day when you had to stand up as you answered the house phone, our male retrevier used to take the opportunity to hump your leg. Trying to keep your voice even whilst shaking off a very persistent large dog is no mean feat. Although his peak moment was when I had to pull him off the Minister who had come to visit. He had spent the hour telling Robbie how beautiful he was,so what’s a dog to do? 
It’s a rainy day of ‘summer’ today and I’m reminiscing whilst this generation of cat and dog play the , ‘who gets the bed’ routine. Earlier this week I was distracted by the cute wee dog shuffling along the top of the sofa to sit almost on the shoulders of the Chair of thĂ© meeting. Initially he looked like a cuddly toy. The next meeting it was a cat that intervened. But my favourite cat moment of lockdown was with another man of the cloth. There is something especially wonderful to see something unfold that the prĂ©senter is totally unaware of. Of course the stars of lockdown pets have to be Olive and Mabel. If you haven’t seen them do click on the link.
OK. Maybe I need to stop writing, have my shower and start the day. I have a friend visiting, in person! I’ve forgotten how that works......I’m noticing how much more comfortable I am staying in. Lockdown has shaken my confidence. I guess it will gradually return? 

Saturday 4 July 2020

Anyone for the pub?

So I’ve used knitting projects to help me get through lockdown. It’s really helpful as it’s mindful and you get to create something for people you care about. That part is especially satisfying. I’m also writing something which is taking time and not just energy but emotional energy. I hope in time it will be valuable. 
Now I’m telling you this because it’s not leaving much space for writing my blog. And life is still in a very predictable pattern which in some ways is comforting and creates a boundary it’s difficult to breach. Not because it will result in anything terrible ( hopefully) but it feels safe. England are opening the pubs today. I can’t be alone in thinking I’m going nowhere near a pub once they open in Scotland. I live in a city with a plethora of pubs, many with ancient history’s of body snatching, stories of loyal dogs, of hauntings or famous visitors. Our pubs have books describing them, there are many pub crawls and even literary ones. 
In a medieval city, they tend to the cosy and dark. Good luck with two meter distancing or disabled access for that matter. The days are long passed where we enjoyed a late night drink in the Grassmarket  and bought fresh rolls in the local bakery to soak up some alcohol before we headed to bed. The old Royal Infirmary was so close to a local pub you could page the on call doctor so they had to leave behind their pint and head back to the ward. ( yes that was a long time ago when rules were made to be broken or just ignored). 
The Old Royal Infirmary Edinburgh 

This city has seen plagues come and go, had hospitals for tuberculosis and special wards for  polio patients. It was where the first big outbreak of HIV and AIDS were identified. Part of the  hospital that housed the specialist wards and ICU for COVID 19 was initially the poorhouse. And of course it’s had asylums for people coming back from wars with shell shock and those whose mental health issues took them away from society. They even housed women who were pregnant out of wedlock who were never allowed home. Edinburgh notoriously dealt with the plague victims in a terrible way. Mary Kings Close now tells of the bricking up of 300 residents to stop the spread of the plague. Leith Links is on top of mass graves as are parts of Bruntsfield. 
Mary Kings Close-the buried City underground 

I’m taking comfort from this potted that times do change and even pandemics that fundamentally have changed the way we live will pass. But not without a terrible impact like those gone before. I would love to see a special garden dedicated to those who suffered during this pandemic. A place where people can mourn their loved ones as this pandemic has robbed many of the normal rituals of grieving. 

But that’s not going to help the thousands who have lost and are losing their jobs. I’m fearful for them too when our social security system is so punishing and the opportunities so few. The balance between protecting health and protecting the economy is incredibly challenging. But encouraging people back to pubs as they are in England seems to  put economy before health and that feels scary from my position in Scotland. Ours has definitely been more of a slow easing and personally I’m grateful for that. But as we witness inequalities widen we must as a compassionate society be prepared to invest in supporting the most vulnerable economically too. 
And not as charity donations, welcome though they will be; this needs to be a fundamental shift from neoliberal economics to investment in all our citizens futures. Crisis can lead to wide scale change if we let them. 

Thursday 18 June 2020

Let love win.

I’m realising my life has become two dimensional and since the weathers changed, also a bit grey. 

Till now I’ve been content to be in the house and garden. I’ve managed to get some sun and even have lunch outside. I’ve listened to bird song and enjoyed seeing the flowers come out in our garden. 

But it’s joyful to see the family in the garden. The activity of our grandson is entertainment itself and life so full of discovery. Cara and Davie are becoming sound friends. Yesterday they sat together and Davie realised the fun of feeding the dog all your food, even as Mum says no. Especially as the dog then tickles your hand as she licks it off. He was in a kink giggling and Cara was living her dream. We laughed so much it was impossible to stop the dog or Davie. Social distancing is not in their lexicon. 

For me social distancing means I have to sit to one side of life. I realise I’m sort of seeing it through a lense thats greyed off. Only Davie beyond the household has breached the distance and I fear that once this lockdown has passed I won’t know how to properly take part in the world again. 

My emotions too are greyed off. And my mood is flat. The sort of flatness that stops me wanting to do things. Clearing out my office space has been on the cards for months now. It may as well be for me to climb Ben Nevis. I’m tearful even as I think of it. When I feel things are just too tough I know I’m struggling with my mood again. 

I see it in others too. It’s almost a lockdown phenomenon. ‘You can go out now folks. Mmmm it’s ok I will stay here, where I’m safe.’ But when I have gone to the park it’s been wonderful. Time outside is special. But social distancing is stressful on pavements. I tense with everyone I see. No wonder once I’m home I’m completely exhausted and yet all I’ve done is drive my mobility scooter. 

Recent polls and surveys have identified another lockdown phenomenon. In the few weeks where we’ve seen so much about racism and rightly so, we’re also seeing people’s  attitudes to the disabled harden. The polls have identified what can only be called hate crime. People told they should not be outside, told no right to go on public transport, spat on when they’ve asked someone to let them go past safely.....I won’t go on because it distresses me.

Since being a wheelchair user I have noticed behaviours change towards me. The occasional ‘does she take sugar’ moments and giving change for something I’ve paid for back to who ever is with me. Mostly I don’t get too wound up by them because life is too short but I do make a point of speaking up in the moment nonetheless. I’ve not met hate crime as yet but of course I’ve met endless occasions when access is denied because of the building.  I feel so guilty when I’m with others and they are left with the many compromises I’m used to making. I know all the family are now awake to these issues. Is that why some people are so angry when they see us out, after all they are used to a world that we can’t access. The hidden people who have no right to inconvenience the able bodied! 

I do experience many many kindnesses too. I do believe it’s the minority that treat the disabled as lesser than but the data suggests it’s not as few as I would have thought. It feels like a slippery slope we need to deal with. Changing attitudes starts with us all, just as it does with black lives matter. If the public look aside when they see disabled people or indeed people of colour treated wrongly then that’s the culture that prevails. I don’t want to live in a culture where hate is the norm. We can and must be better than that. Lets be the world you want to see where love wins, always. 

Wednesday 3 June 2020

We need to talk about Shielding

We need to talk about Shielding               




I’m not sure why I cried after I saw my grandson in more than two months. Maybe it was the goodbye without a hug that was my final undoing. There was something unfamiliar and anxiety provoking about this. We played in the garden, he loves my wheelchair and in normal times he would snuggle in for a read. I missed that.
 We had sent him a book about Greyfriars Bobby and he loves it, I hear. He’s a sponge of new words, yesterday was digger and then to my delight, Grannie’s house. He kept climbing the step and knocking on the door with my walking stick. ( fine practice for being Black Rod as is the medieval way in the Palace of Westminster!).But he wasn’t allowed in to enjoy his resident toys and in this case a favourite clock that aroused a memory. Thankfully the sun was shining. 
Our neighbours six year old Grandson recently cried himself to sleep, saying ‘ I want my old life back’. At times I have felt the same. My heart ached to hold not only my grandson but my son and daughter and daughter-in-law too. Their hugs have been healing over the years. At only 20 months Davie has only so much understanding and hopefully is spared the sense of loss expressed by the older children. But I want him to remember our hugs and love. 

All of this is so relevant to discussions around shielding. Our experience is not unique. When we tell people to stay in for 12 weeks at least to protect themselves from the virus then we have to also to seek to understand the many impacts of that. Last weekend in England those who were shielding were told off you go. We told you twelve weeks but it’s fine, honest! I can only imagine the mixture of feelings that was met with. Delight, concern, shock and many, many questions. There were limits to the newly announced freedom, so people could go out with a member of their household or if alone meet one person from another household. 
But it also happened at the same weekend the Deputy CMO ( chief medical officer in England) said this easing of lockdown when the virus was still very present in communities, meant this was a very dangerous moment. What scary mixed messaging.
In Scotland shielding will be reviewed at the 12 week stage( mid-June)  WHO suggest that when the time comes the individual needs to take a balance of risk. Although I haven’t been shielding , I have been in mostly as I felt unsafe in my mobility scooter, trying to stay two meters apart.




I know this has an impact physically as many of us will not have been able to exercise and maybe we’ve been dependent on food from others. And many people have been separated from human contact. As a species who are hot wired to connect that obviously has an impact. Human contact has both physical effects ( calming and slows the pulse) but also improves how we feel emotionally. Mental ill health is a growing issue and most services are already a stretched resource. But maybe it’s not that traditional support that’s the answer? Many charities have offered superb support, with volunteers the mainstay of that. So many people have gone extra miles and then some. But no system can rely on that long term.

 Scotland has a chance to do this differently and for example ask those shielding, what would help most? Get people with shielding experience in the room as partners planning a way forward. Ask what matters most as lockdown eases, what’s helped most? What could we do more of/less of. 
Also those very charities which can provide so much to help,need the resources to develop. Volunteers and services are not a free resource, if we want them to do their best. Working with communities, not doing to them will give the best results. We don’t know all the answers but as always, most importantly, we need to ask the right questions and listen to the answers. The most vulnerable in our society, need our best response. There are lots of families, just like mine,waiting and hoping to reconnect. 

Monday 25 May 2020

Relationships before work; the new normal?






I saw my Grandson today and had a great virtual catch up. He like to sing bits of songs now so we can join in. Three craws, the current one. So as we know in Scotland, Thursday is the big day. It’s the day that we know if the numbers are still  going down and we get let out of lockdown, cautiously and we get to meet in person.  So those numbers are crucial. If I hear you’ve all been down the beach at Porty or been to ‘big Isa’s’ caravan* and the numbers have gone up I will not be happy! 
But if we’ve all been following guidelines then I get to see my family this weekend. Sadly not all together but I will take what I can! We will have to avoid our Grandsons full on mouth kisses but if I can just see his smile, smell his hair as he rushes bye I will be happy. I want to see how his Mum and Dad are fairing too! Working and full time parenting a cheeky nearly two year old is seriously difficult. But for him having his Mum and Dad all round the clock has been a gift.
Our daughters smile lights up rooms and to see her close by will lift my spirits. She’s worked hard throughout. Molly, her Jack Russel,has loved her though it. In terms of my life not much else changes. But that’s ok for now.

As lockdown eases I’m hearing of the people who have been doing the couch to10k and the difference it’s made. I’m delighted for them, honestly. There’s been the keep fit with the kids, yoga to start or end the day. I’ve watched this with such sadness too.
I used to love to jog, do yoga at times but mostly walk, especially with all dogs who have kept me company, over the years.  I’ve so many memories I can draw on. But to be honest it’s so infuriating that nobody thinks; what could we do for the disabled community. Consider that maybe they get a bit pissed off we rarely see programmes aimed at our wellbeing? The answer is you bet we do! 
I’ve lost strength during the lockdown. The main exercise that helps me ( and many others as it as the water protects from pain) is in water. Hydrotherapy was stopped at lockdown and my local pool is closed. 

Why not open local pools for only disabled people?

Some early work has shown that the lockdown has seriously affected the mental and physical wellbeing of people who are disabled and those who are shielding. We need to think about this for people. Many of us will feel anxious still about the virus. I know I’ve lost confidence outside the house. My mood has been affected and that makes this all worse. I’m sharing this not to look for sympathy, it’s really to look for equality. It’s probably too late for this lockdown but the chances are another may follow and some thoughts about the needs of proactive support for those with disabilities of all varieties would be welcome. 
Paradoxically I find I’m anxious about things changing too. Reflecting on this I think I want to protect having more time. I’m inclined to keep busy, often with friends and family but also with work and this can fill life with so much that I become exhausted and I’ve not time just to ‘be’. 
Maybe that’s the biggest thing lockdown has given some people is time just to be. Who wants to go back to a world of commuting, of constant travel,of being away from home. Suddenly some people at least have had time to spend with family they only have in holidays. In Japan with lockdown, the Suicide rate has reduced 20 % as they been able to work from home and be part of their families and communities. It’s a simpler, more authentic life. Where relationships count above work.
One of the things I’ve noticed is that the time togther has really made Andrew I closer, in our protected wee bubble. I really don’t want to lose that, we’re so fortunate and rich in the things that matter. I wish you and yours a safe ease out of lockdown

* Reference to Janet Godleys daily briefing voice overs. The language is juicey but it’s a good laugh in dark times! 

Friday 8 May 2020

The week we cried



At first we locked down
With anxious giggles,
With anxious shrugs,
With cautious sighs,
We closed the door.

What can we do?
We weren’t sure.
Shopping, no not us.
We started the online search.
A sudden realisation, this was difficult.

We zoomed.
We Housepartyed.
We FaceTimed.
It was fun,
in its difference.
A family quizz,happy until the connections cut

We shared jokes,
Endlessly.
Have you seen this one?
We laughed.
This strange time,
soothed by one shared joke.

Then we shared the articles,
critical of government.
The numbers of deaths increased.
We watched the endless updates.
We held our breath on lockdown decisions,
beyond our control.

We shared music created in rooms apart.
Dancers weaving their spell just for us,
alone in our homes.
The sun shone as if to mess with us,
gardens tended and
parks never so enticing.

But this week, this was the week we cried.
For our own losses,
For the losses announced each day,
For the deaths alone with strangers, 
For the care homes, oh yes the care homes
that collective grief unbearable to witness.

This was the week we cried for ourselves
Alone, socially isolating in our grief.
Disconnected,
yearning for connection.

The week we cried.




Wednesday 29 April 2020

So there IS such a thing as society...change starts there.


The Boy Mole Fox and the Horse
Charlie Mackesy




At heart I’m an optimist . I can usually see an upside. In recent years as well I’ve been practicing mindfulness and I do feel gratitude for all I have. And by that I don’t mean stuff, I mean people, I mean love and kindness, I mean all the things money can’t buy. But it’s also having enough to get by, to buy food and wine, to pay bills, to pay for Netflix,WiFi. I’m a struggling optimist this last couple of weeks. I can’t see the upside of this virus and worry about how it will affect us long term. I value not having to rush around and to have time to read and be mindful but in some ways it feels like the eye of the storm. We’re protected from the pain and suffering of others and maybe I’m struggling with survivor guilt in a way?

I’m very aware daily of my privilege. I’m comfortable, I have a house, a garden, great support from my husband and I’m able to do things to keep me engaged and feel useful. But I’m fearful for those whose own lives have been devastated by this virus, for those whose hopes have been washed away, and those who were already struggling with a vicious benefits system. This virus is like no other we have experienced and it’s not only taking lives, it’s changing lives. I do believe some of the changes will be for the better but we have to recognise it’s going to be different. And unless we do something there is a real risk those who are struggling will be left to carry the pain and injustice.

 I suspect what makes me most fearful is that I just can’t trust the Westminster government and it’s behaviour around this our greatest health challenge in one hundred years. I don’t know what is true or what is spin. It’s scary. Our own government in Scotland by contrast is working hard to be transparent, open and honest about what is happening and also about the future. But there remains the interdependence with all of the UK so the complete path is not all ours to navigate. 

Nicola Sturgeon spoke of the new normal and like many I would like that to be kinder with more connected communities. I think we need universal basic services as well as income to take away the social, health and economic impacts of poverty on people and communities. This experience is a confirmation that there is such a thing as society and healthier and happier nations have to start from there.


 So Thatcher was very wrong about there is no such thing as society and neoliberalism has also been shown to fail spectacularly, especially here in the UK with our shocking inequality.  Our new normal should not and cannot be a tweak of the old one but an opportunity to harness the spirit of kindness and connection and build a new country to be proud of. All change starts from communities so like everything, it starts with ourselves. And this time we really need to step up. 


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