Freedom! Blue badge blues 14

Born to be wild? 

Freedom! 

I spend an inordinately large amount of time trying to work out how to increase my independence. Now it’s personal not national I’m talking about here. ( Although after this week in “Brexshitland” who could blame me...but that’s a whole other blog).

Back to my independence...I have shoe horns and grabbers up and down stairs now. I have walkers upstairs and downstairs too. I have a walking stick up on each level. I have a device to put my socks on even. With a shoe horn I can manage one pair of boots but not the others. I’m currently researching more ankle boots I might try and negotiating with Santa given the expense!

I have my much loved mobility scooter which if set up for me, gives me an exhilarating freedom to travel around this part of Edinburgh. I can reach my new Open Book group in the Botanics on my own which has been a much valued addition to my life. My current challenge as winter arrives is however is keeping warm. I may need to purchase some duvet type cover for my legs but in doing so I may reduce my freedom as it will then become another obstacle to negotiate. Can you see the challenge? Everything is complex in my new life ( please don’t call it my new normal...it brings out a dark side in me). And it takes time. My concept of time just now is blown. “I won’t be long” is my most commonly used big fat lie...

My other dilemma is finding a car I can drive with aids to enable me to travel on my own. Help!That feels like an enormous task just now. I can’t walk without a walker to the car and can’t lift it in or out. I then need to be able to drive which is going to need to be an automatic car. Currently I have a manual car and a right leg I can’t trust. And it’s painful to get in and out. I then need to be able to assess how far I need to walk when I arrive-always assuming I can park, even with my blue badge. That’s gone badly a few times. My recent experience was taking a  taxi and my walker to the venue then borrowing a wheelchair to get me to the meeting room. So far so good. Then there was a fire alarm. Fortunately they had kept the borrowed wheelchair by the door and I was able to get out with support. My realisation is that I need a wheelchair as well as my scooter, which isn’t very transportable, or I’m not safe. So I’ve been referred for a manual one meantime. I’m looking into the motability scheme and hoping it helps me move forward re having a car I may be able to drive in time. A red one would be my preference. ( that was a joke by the way....sort of). 

Sometimes it’s easier to just stay at home and that accept the freedom I mentioned feels a long way off....for now I hope. 

The watcher from the chair Blue badge blues 13

I yearn to stand

and coorie him

kiss his milk full cheek

smell his untarnished skin

feel when I held his father too

I yearn to stand

and comfort him to sleep

and sing the songs that

Grannies have aye sung

the stories of our past

Yet gratitude fills my heart

when we celebrate

our precious boy

and experience the joy

he brings us all

And in a deep corner

of my heart I’m sad

that I need to sit

the watcher from the chair

trying to hide her grief

It’s me or the cat; Blue badge blues 12

Made to measure for Koshka 

So Koshka had the walk of shame at the vet ( again) and he’s back on a diet. Help!" You know how it goes; he eats cos he's fat. he's fat cos he eats..."

Our day starts around 4am when Cara the dog decides she needs to go out ( and then follow us up to bed!) Cue Koshka to pronounce his hunger and so it starts....

Feed me!

My friend was staying to support me recently and as she said when she too was caught; " he got me when I was vulnerable in the middle of the night!" By morning I don’t even remember what I gave him. When our feet touch the ground in the morning he springs to his bowl from anywhere and we eak out the first of the two pouches he’s allowed. I’m so relieved when it’s lunch time and I can give him some dried biscuits ( measured out carefully now). 

A previous vet said if he goes out there is no point restricting his food as he will find it elsewhere. He’s out just now, maybe I should warn the mice and the birds with a sign saying "BEWARE of the CAT, he’s on a DIET! "

Another friend recommended trying raw food so I’ve ordered some. Christmas may have to be cancelled. My recently rewarded person independence payment may need to go on cat food to stop me being eaten in my sleep. 

And talking of sleep, he’s currently not coming with me to bed. I’m having a withdrawal of love strategy applied to me. And as you know I’m vulnerable to that just now. His purring presence beside me when I came home from hospital was so soothing. 

Last year I was involved with asking people with neurological conditions what most helped them and I was struck by how many answered my cat or my dog. We can assume that our roles as caring professionals are the key to wellbeing but so often it’s the unconditional love of a furry friend that makes the difference. If only the cat could make me a coffee and serve me cheese and my life would be sorted and it would take a huge amount of pressure off my husband! 

Of course for me Koshka’s love is completely conditional. On food. My tension builds as the day goes on, can we survive on the recommended rations? One purr-fuelled head butt and I give in. Then the guilt sets in-for me that is-he’s without guilt.

Just as well he’s so very handsome. 

Thank goodness the dog is thin! 

To see ourselves as ithers see us: Blue badge Blues 11

This week we have been watching The Crown...Yes I know!  I’m no royalist and probably a republican at heart but we had a few recommendations of it as interesting drama. It’s only one perspective of course and they skip over theories that the abdicating king was also a risk because of his fascist friends for example- but its interesting. The last one I watched was when Winston Churchill retired and he saw his portrait that had been commissioned. An honest portrayal of his frailty was too much for him.

In that moment I saw myself as well. A mirror of my own shock at my frailty. I seem to possess an ability to lock some of that reaction in a cupboard, only to be taken out on safe occasions. I keep going, taking comfort in minor achievements. I love getting out in my mobility scooter, even when I get wet! I smile at everyone who catches my eye and get warm responses. It’s a joy. I have created a safe environment at home where I’m resonably ok, apart from trying to do things in the kitchen! 

But when I’m out I’m reminded of my vulnerability. I remember that not so long ago I could walk the dog with pleasure and no pain. I see this shock in friends and family reactions to me. 

I too feel that shock. How did this happen? I know cognitively why it happened but my body remains traumatised. The physio reminded me that I’m still in the acute stage of recovery and I was relieved to hear this as it does feel like that. 

I’m holding trauma both psychologically  and physically. I recognise that my blog has become my way of processing all that’s happened at a thinking level. But the feeling level also needs cared for. I’ve found mindfulness so helpful but if I’m in pain or I’m getting the nerve recovery jumpiness I can find it really difficult. So I have to choose my moment. It’s not easy but I when I can it’s so powerful. For years I thought trauma could be solved by talking it through but now I know that’s not enough. I’m still reading “The body keeps the score” by the psychiatrist Bessel Van der Kolk.Its really helping me understand this process I’m going through and I do recommend it.

Perhaps the greatest experience of healing just now is holding my Grandson in my arms. We are all feeling blessed. My family and friends are the reason I’m getting better. 

I’m also slowly re-engaging with work, including writing, facilitating, coaching, mindfulness. I’m especially looking forward to the retreat I am co-facilitating next month. I’m setting up my office at home to see leadership coaching clients here as well as on skype (or similar). But I’m also considering using my extensive professional, coaching and lived experience to enable others on a one-to-one basis to adjust to the impact of serious illness. It’s a way to make sense of all of this and for me to use all my experience in my offer into the world. 

I would really value your thoughts- I’m on twitter @audrey.birt.

I’m slowly integrating my former self and my new self, trying to accept the changes and find the energy to continue to improve. Jings it’s hard work!

Ye cannae shove this Grannie; Blue Badge Blues 10

Welcoming Davie 

The first time I understood how important it was to me to have grandchildren was when I was first diagnosed with cancer. I lay awake at night thinking how long do I need to be here for? Initially it’s at least see both the children safely on to secondary school. Then it was leaving school. Then maybe graduation or meeting their life partner. It was always long enough to ensure their wellbeing and that they knew how much I loved them. And I gave myself that goal, whatever I needed to do to secure that I would. But the trade off ( in my strangely distorted thinking process) was that I would need to accept I would never be here long enough to be a Grannie. So many people are robbed of parenthood by cancer, at least I was more fortunate than that.

And as I celebrated each decade thereafter, I felt such gratitude for my survival. At 40 I completed a Masters and had a party for all those who had supported us through such hard times. At 50 I decided to grow my hair again with a small attempt at rebellion to views about what older women should do! At 60 I had breast cancer again but nonetheless managed to share célébrations with my family and friends and savoured every moment of our time together ( and my hair grew even longer!).

I also saw my step grandchildren, who are very precious and have given me such pleasure in my life, grow into adulthood as smart, compassionate and beautiful young women. I’m Audrey to them, not Grannie but that doesn’t mean the relationship isn’t meaningful. What’s in a name; it’s love that counts.

So just as each decade was a time I never thought I would have, becoming a Grannie this week has felt extra special. Nothing quite prepared me for the explosion of love I have not only for Davie ( love his name) but also when I see him with my son and daughter in law. I’m very aware of my physical limitations and could list lots of things I won’t be able to do with him. I’m not so much ye cannae shove yir Grannie aff a bus;I’m more "ye canne get yir Grannie oan a bus! " So instead I am trying to focus on what I can do. Last night as I snuggled with Davie I sang wee songs and promised him I would be there anytime to hear his stories, I would read him many stories. I would do my best to make soup ( with help) and perhaps have a treat tin like my Mum always did for his Dad and Aunty and their cousins. I even promised ( don’t tell anyone), if he sat nice and still, he could catch a ride on my mobility scooter on what I hope will be many trips to the Botanic gardens. 

I think he smiled as I whispered to him. OK well maybe it was wind; but I do know my whole body smiled as we chatted. He is one lucky boy, surrounded by the love of his Mum and Dad, ALL his amazing and talented Grandparents, his Aunty Cat, plus wider family and special friends. If only all children experienced the security and care that brings, it would be a very different world. 

When truth hurts: Blue badge blues 9

I feel about my outside walker or rollator, as us in the know call them, as I did about the leaflets i was given when I had breast cancer in my thirties. They had older women with grey hair on the front of them. The nurse touched my hand as she gave them to me and I wanted to slap her face with them. I then spent several hours speculating on how I could shred them and post them out the slatted windows at the top in my room in the hospital. It was on the tenth floor, no one would ever know. In the end I didn’t, mostly because I couldn’t reach! 

Back to the walker.....it’s clumsy, heavy and brown. And I hate it. For many reasons. I hate it because I can’t walk any distance anyway and it reminds me of that. I hate it because I need help to even get it out. I hate it because it’s ugly and my heart sinks as I approach it. I hate it because I feel disabled by it. I hate it because it reminds me of how I really am, not the version in my head still. And being honest, i hate it because it feels like something an older person should be using and I’m still only a youthful 62! I’ve looked at snazzier versions and they are slightly better but the truth is I still can’t walk far or easily and I’m not keen to make an expensive mistake.

You see when I’ve recovered from things before I’ve found there is a point when I start to feel better and then it improves exponentially. I’m discovering, and my recent appointment with the neurosurgeon reinforced this, this recovery is much

slower. 

So as a fan of an asset based approach I’ve been focusing on what I can do. I can get to the Royal Botanic Gardens in Edinburgh on my own in my mobility scooter. Not everyone believes that you are really disabled when you are in a mobility scooter. Maybe we just don’t look ill or meek enough, who knows? But what I love is the look on children’s faces. They reflect how awesome this is and they would really love one too! I’m thinking about pimping it up a wee bit. Maybe just a bairns not bombs sticker if anyone has one handy? A good friend was staying to look after me at the weekend and we went out for dinner locally. On our way back we got some good humoured attention from a man who had a walk that suggested he wasn’t quite sober. And the next day we rescued an elderly man in a mobility scooter who was lost; forming a mobility scooter procession that must have been quite an entertainment. He got home safely, saying thanks and that it had made his day to meet two beautiful women. I remarked later that when she came out with me in the scooter we got chatted up! Her rather harsh reply was reminding me that one of them was drunk and the other was aged 100! 

I’ve relearned to knit this last few months. Yes you did read that correctly. I’ve done a blanket for my soon to be born Grandchild. I’ve also knitted a cardigan. But who knew how hard it is to sew baby cardigans up? It’s only because the drugs I’m on for nerve pain are sedating that it’s not gone out the window with a shower of expletives. I’m taking orders for Christmas now.....

Coming out of the shadows

Coming out of the shadows; Blue Badge Blues 8

Edinburgh Festival Fireworks

It’s August, it’s Edinburgh, it’s mayhem, it’s the festival. I decided years ago as a resident in Edinburgh that it’s important to embrace it, bring out your inner tourist and have a bit of fun. The other option is to moan about the crowds, the buses, roads being closed and so on and that’s not appealing. But this year I’m only two plus months post op, i can’t walk more than two steps and it’s beyond overwhelming. I’ve been to two shows and to say I’m exhausted is to underestimate the impact. I’m currently thinking I may never try to go to an event ever again. I’ve had to make several phone calls in advance to check accessibility and how to ensure that I can get there with my families support. The planning, the exhaustion and discomfort of the trip, worrying about parking, lifting mobility scooters, gaining access and then just enjoy the show!

My abortive efforts to regain independence are probably my biggest source of frustration at the moment. 

I described myself as living in the shadows recently. I’m hit by such a sense of loss as I acknowledge this. I went to see Loki and he was challenging privilege in his fringe show. His challenge was, where was the male privilege for those men living in poverty, with little hope of change. Good question. There are many forms of privilege and so the show made me reflect on able-bodied privilege. For example 50% of fringe shows are not accessible. The inequalities that open up for the disabled and their carers are well documented. Maybe the disability movement needs it’s own #metoo campaign so we don’t forget and we bring an energy to improving access and involvement.

For the first time in my life I’m poised to apply for benefits. It’s the PiP ( personal independence payment ) form thats sitting by me. Even to get here I’ve had two loops to go through where I felt I was treated a bit like I’m guilty ( of benefit fraud presumably ) before proven innocent. It’s challenging but I’m determined to see it through. I can only think that so many are put off by even these stages and that is the purpose. No wonder attitudes to the disabled need to be challenged! 

But on the upside my efforts this week have allowed me to see two of Scotland’s greatest talents; Karine Polwart and Loki ( Darren McGarvey).Both were impressive and clearly masters of their arts. As well as very talented  both are  thought provoking and challenge you to,yes,see the beauty in our exceptional nation but also to look in the shadows and be honest about our ill divided land. 

If we ignore those in the shadows for whatever reason, if we don’t address the fundamental inequalities in our society, ultimately we all lose. If you don’t know their work do have a listen and check out the Orwell award winning "Poverty Safari". 

Meantime today’s challenge for me is tackling the stairs, wish me luck......
And on other news I made it to the sea side!