love flourishes in the harshest spaces
I wrote this piece to share my experience of recovery from a serious stroke and to encourage others not to give up! Looking wider for ideas to heal when your brain is mush may be tricky but its worth it, the rewards are huge, physically, emotionally and mentally.
There has been some interest in how i have aided my recovery from the stroke. the answers are many and various: I’ve learnt: don’t discount a new idea, try it out as long as its deemed safe to do so.
Immediately following the stroke all was a grey fog in my head with an inability to get into my brain’s files and memories, meaning frustration and confusion, an only straight-line-thinking world. No cross brain departmental research as I couldn’t connect the different regions within my brain. No linking meant no clever thinking. Where were the words? Where were the stories? I had cognitive limitations. I had to learn to live within them then slowly expand what I could do.
As soon as I could I began to journal. I am a diary person and use writing to process my thoughts. This meant I could ask for my older diaries from home to fill in memory gaps of recent events. My recall for what had preceded the stroke was poor- I didn’t remember that my partner had left nor all that went along with that for instance.
Journal writing helps me sort thought. Gratitude practice promotes positive feelings. Something I did and have increased doing as my experiences at that point were largely negative, those about me being fearful and conservative so I needed all the positives I could find. Each day one notes as many things to be grateful for as possible. This means there are positives to go back to to help get through a bad day and the mindset improves to looking for beneficial events and persons. The day’s end becomes a celebration. I took feedback on my condition from visitors rather than clinical staff since they didn’t like to offer opinion. Physios writing me off did not help me, rather I created lists of what I could do and my goals for the near future which were realistic and achievable.
Exercise: this is tricky in hospital but for someone like me, normally so active, it was essential. It had been suggested to me that the recovery unit would have a pool. This would have been nice. Just getting ANY exercise was nice. We know exercise helps mental and physical health. I desired walks about the grounds in nature and looked for ways to get out of the ward. At first i was pushed in a steady or a wheelchair. That helped me navigate myself later. Visitors were allowed to escort me out so we walked on-site and also in local parks like Rozelle and Eglinton, both of which have cafes for resting in and at the beach: easy walking, getting fresh air and a change of scene; contact with nature and pets was a must for me.
I used yoga stretches and relaxations, would have loved yoga sessions though. Breathing exercises are easy to do and sustaining and relaxing. Awareness of breath, body scans and metta-bhavana were meditations I was familiar with and found beneficial. Some of these can be found online for a guided meditation.
I learned to ask for and receive reiki, healing, prayers- all brands of healing love, which I was more used to sending. I refused bad energy and bad food, got out with help from friends and my chiro to shop for vegan food (soya desserts and soft ‘cheese’ and quorn ham and vegan cheese. Friends brought me nut butter, toasted seeds and nuts. I heard that the International Network of Esoteric Healers’ conference attendees had been working on me, I offer much gratitude to all those who helped me heal. I could feel I was surrounded with love, a fabulous sensation especially after the atmosphere I had become inured to domestically.
I had a crania-sacral session which helped me rebalance and to feel sensations as I was ungrounded- I was literally all in the head.
I needed time and peace to meditate (I used the garden behind the wards) and to sleep (always hard in hospital)- I used ear plugs- eye masks might have helped too and essential oils were helpful so that I was surrounded with scents I enjoyed rather than hospital pongs.
I started to read again to force concentration inwards till eventually it made sense. I read a book on stroke recovery “My stroke of insight” by a brain scientist who was stroke affected and analysed her way through her recovery. Also articles on brain science and health.
Music is important to me, where possible I asked for the radio to be on-even pap pop was helpful to recall my old world and its rhythms. I also tried doing some Five Rhythm Dance which is something I often use to help me integrate and process ideas into the mind and body from the emotional body.
I wanted to remember, to recall stories. I used poems as prompts and wrote my experience so I could back-check what had happened and when. I got back onto Facebook and shared, found a space I could be valued (at Writing with Soul’s community page), found shared experience on SWAN Conversations page and Highly Sensitive People’s page. There too was Unashamed Voices of Autism where the likes of myself are understood, unlike in hospital where autism needs were unappreciated though I wrote that I am autistic on my information board. No-one ever asked what this meant for me or asked what I needed, a bit sad! ( I left them a good book to help them improve).
Other sites were INEH healers’ site and The Gratitude Bank.
I did try to improve my diet to have less carbs and more salad leaves and vegetables and fresh fruit. I brought in my own protein as the food was poor in this. It’s impossible to get a simple boiled egg there for instance. The food was usual Scots diet only for me the meat was replaced by boiled veg. Not ideal and they poured sauces over veg and salads ruining it for me (a texture and taste issue). And why was fruit all from a tin? In summer too!
When I returned home I was overwhelmed by so much being displaced due to friends having to find things for me and run my affairs while I was in hospital. I couldn’t recall what went well together to be able to cook. My confidence was affected. So first off to help me I got back to work. My business has many protocols which I could use to remind me of processes. My energy was low but again confidence grew with repetition and positive feedback. Support was vital here. I had offers of lifts to smallholder craft events and yoga, both good for my coordination. I chased up boarding enquiries to gain some trade to give myself some work to do since all bookings had been cancelled and refunded. I need to be useful! It seems though, a rumour had then gone round that I was dead or unable to do anything- that was an assumption I was keen to squash. I was able to clean and paint to regain my confidence and reputation. I joined a choir with a friend to be able to sit in 4 part harmonies as sound medicine.
Yoga was fab and my teacher allowed for my health limitations in the exercises. This helps my circulation, strength and flexibility as well as my focus and clarity. My physical health improved weekly. She suggested I join a new 8 week Mindfulness class about to start. Even though I couldn’t afford it I had faith the money would come if I projected the need and focussed in yoga and meditation on achieving this (my sankalpa). Also I focussed on my poetry being published which had been something I’d wanted to achieve this year. I put it into my ‘bow’ and fired it forth.
I wrote a report on my hospital experience and sent it to the health board as feedback with suggestions on how things could be improved. Some of this was in verse to gain attention, being different. This was passed back to the charge nurse who willingly picked it up, compared notes with other wards and implemented changes. There will now be information on the wards as to how things work and who to ask for what. There are now activities in the common room ranging from exercise machines to crafts and music. The cook will speak with patients on special diets to see what they will eat and want to eat.
I tried my voice out at Belleisle Conservatory community song and story days. This helped me know I still had songs inside me including the words and I could convey a story if I planned it through with cues.
I learned to kick for my social rights, re Universal Credit: DWP were sorted out for me by my MP and her staff since they understood the UC system. This resulted 6 months from the initial application in some income, hurrah! So my mindfulness was paid for. I used the council Advice Hub to help me fill in the complex DWP forms. I’ve still not been interviewed or assessed, am not holding my breath. I’m lucky I had savings to fall back on. I learnt to not accept their belittling, its not a positive system.
I did a daily review of my progress and self congratulated myself to lift my spirits. Feedback from observant and medically qualified customers helped me see my progress too. I took short walks in the woods or garden- my energy levels still low I needed to sleep, sleep, sleep. 12 hours at least a day. Afternoon naps too. Blood pressure monitoring was done at home and via my practice nurse (better attention than the doctor) who said he’d see me again in a year- there’s good follow up and reassurance, that’s not it! Meanwhile there were still many hospital checks- blood pressure, clotting, psychologist, speech therapist, then the dentist happened: the 4 months hospital experience had left my teeth in a mess (no dentist there or dental care encouraged). Being late to the dentist one day led me to gaining points and a fine for speeding as my detail focus was not as good as before.
The neuropsychologist suggests my visual areas are impacted where my verbal regions are not so I need to focus closer, use gadgets (as I do with navigation now) His advice was basically to develop my Mindfulness which is an ongoing training and that is more specific than the psychologist is, more easy to do.
I ignored well-meaning advice to do little and looked for stimulating events, after all I had a brain to mend. I attended launches and put my poetry forward to Red Squirrel Press, a well known and loved poetry imprint, then forgot about it till an email arrived accepting my work! It will be 2 or 3 years till launch so plenty time to make illustrations.
Last weekend I attended a writing retreat in Cumbrae with Donny O’ Rourke and Barnard McLaverty and my writing group the Barrington Bards and I sang my injured heart out.
Back home I tried some basket making which is good for coordination. I went back to playing the clarsach, had to begin over again as I had forgotten much but quickly got back into the swing with daily practice. Repetition is good therapy. It also improved my sleep pattern which was still locked into hospital routines.
I began to cook after having eaten ready-meals and mixed salad for 3 months. Those of you who know how keen I am on cooking will be surprised at that but again confidence had left me, along with techniques with the lack of practice. Having organic veg delivered each week has given me good materials to work with. I learnt to appreciate M&S’ ready-meals and Aldi for its convenience. I still had rocket in the polytunnel and fresh fruit on the bushes and trees.Mmm fresh figs from the bush, best treat in my world!
Cat therapy, though not good for sleep, is beneficial. Jimi’s an expert in applying care to me. I’ve had dog therapy from visitors and neighbours. Strider is still a big absence in my life.
I started to make woodcuts again to illustrate my poems. Its tricky as one works in the negative so it makes my brain work. Its hard to find the time tho as I am slower on all my tasks.
I’ve done some online courses and joined online group discussions which make me feel valuable and measures achievment. I’ve volunteered at the Burns Museum even tho in limited capacity. Doing Universal credit computations means I work on my income and my maths. I number crunch, raise invoices, resolve booking issues. I’ve created adverts, created mail-shots and printed and mailed them out which refamiliarised me with my customer base. It all helps make the brain work.
I planted containers of plants to cheer the cattery and renewed them as the colder weather came. There are plenty of ways to ground oneself and stretch one’s brain, renew neurons, defy predictions and expectations.
So, Now that i am ‘dead’
How does it feel to hear I am dead?
When DWP write me off, doctors are not positive, customers think that I’m finished
social services are no help, doc says see you in a year, OT thinks I’ll do and the physio too
I can deny this for surely, if I feel, I think, I must live
I am frustrated by the inaccuracy and unfairness
Surely I should be the one to decide when I die?
‘They’ think that I would not be able to work, based on their previous
Experiences of those less able, less fraught with thought
Less determined to be “positive” and achieve
I have reformed my body before, True, not my brain
but thats known to be plastic so must be possible
I believe in me. I believe in my spirit and my will
Those who do not, do not know me well enough
I will find the ways to exercise my inner head
relearn, reprogram, reform, renew
Only those who believe the negatives give up
on progress. Perfection is beyond reality
Mindfulness is not. I follow my intuition
to discover ways to heal in music, rhythm
words, to recall craft and energy. Love rules
Accepting love is life. Accepting life is love
The loss of love is unfortunate, more will surely come
on the seasonal tide, if its valued, if I am valued,
I will more than exist
I thrive, hear this, read this, I’m alive and I live.
Rosie Mapplebeck
27.11.19
I’m planning a good 2020 with shared work and success, completion of cattery projects and a new dog in my home. The poetry collection will be out in 2022.
Rosie
with gratitude to all those who have helped, whether they knew this or not.
Rosie