#Thread
The comfort of a funeral in saying goodbye.
A personal #ActuallyAutistic perspective.
It has been a few weeks since my oldest friend Pat died.
Yesterday, at her funeral, I found out things about her that I had not known before.
This is so often the case. #bereavement
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In the final chapter of her life all the threads of her story were woven together by people who knew her as family, or friends, through her work as therapist, or her connection with the church.
And the readings and music she had chosen herself were an important part of that.
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During her final days when Pat was dying my sister was with her, and a carer who had lived with her for 4 years.
Getting her home from hospital was a logistical challenge they pulled off against the odds because they knew Pat wanted to die at home with the people she loved.
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Coming into the world is often a struggle and dying can be difficult too.
The palliative care Pat received made her passing peaceful.
As a devout Christian she died in the certain knowledge of another life beyond.
In saying her goodbyes to this world she was entering another.
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Between Pat’s death and her #funeral I was in a kind of emotional limbo.
I knew that I’d be deeply affected by attending the service and I was, in ways that I hadn’t expected.
Discovering that I am #autistic has helped me to cope with emotionally overwhelming situations.
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I set off very early yesterday morning, after spending some time in the garden feeding the birds.
Being surrounded by so many feathered friends is a soothing morning ritual.
And I took Waffle up onto the wheat field and walked with her which is another grounding thing for me.
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I did a lot of preparation, thinking about what I could do to make it easier for myself.
The plan I came up with was to travel down with Waffle in the campervan and stay over for a few nights.
That way I’d have plenty of time to process everything, and I’d be alone, but not.
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An advantage of having Waffle with me was taking breaks.
On the journey we stopped twice and walked.
And while my sister hosted a pre funeral lunch I sat quietly in the garden.
The funeral involved meeting new people as the different strands of Pat’s life were drawn together.
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This was the first time since 2020 I had been in the presence of so many people.
And it was the first time since then that I’d been physically close to my parents.
I sat between them in the church feeling their warmth either side.
Like a child, back in the bosom of my family.
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The love that so many people felt for Pat filled the church. The building was full of light.
When I met Pat as a teenager the music she listened to and books she read made a deep impression on me.
Through the funeral service she had planned for herself she spoke to us again.
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Pat’s simple wicker coffin was carried in to Kyrie from ‘Missa Luba’ an African mass.
A reminder of her early life when she trained as a missionary in Africa.
Pat had chosen a poem by DH Lawrence too. It wasn’t one I had heard before. Her god-daughter read it beautifully.
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We remained in the church as the undertakers returned to fetch Pat’s coffin, their brightly polished shoes shuffling.
It was then that it hit home she was really leaving us.
The vicar and a lay preacher who had been a close friend took Pat on the final stage of her journey.
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We stayed behind in small groups, talking about our connection with Pat and what she meant to us.
A contingent set off for the pub. She would have approved.
I went home with my parents. We sat in their living room surrounded by memories from the eight decades of their lives.
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So much of my childhood is encapsulated in this room. It was comforting.
I was glad I was staying over and not rushing back.
When I returned to my sister’s house Waffle was bolt upright in her crate with her eyes fixed on the front door awaiting my return.
We went for a walk.
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The late afternoon sunshine was gentle and warm.
Waffle was excited to have new smells to sniff.
After a short drive we arrived at the campsite where I was relieved to find my booking was valid.
A glitch on the computer system had sent me a reminder for a different location.
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By this point I was almost overwhelmed, so instead of putting on a brave face I said I’d come straight from a funeral.
The manager checked me in very kindly.
I spent the rest of evening quietly with Waffle enjoying the special kind of solitude being with a dog gives you.
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I found the white feather I picked up when we went walking in the morning.
I thought about the connections we have with people that last almost a lifetime.
I thought about mortality, death and dying, love, loss and the kindness of strangers.
I thought about synchronicity too. 17/
Early yesterday morning I was thinking about how to channel grief well.
I remembered @CarolineAldrid5 who is fighting for justice for her son Tim, and all the others who ‘died waiting’ for mental health services.
During my drive south Caroline gave an interview on Radio 4. 18/
We’ve heard all the platitudes before. More needs to be done. There’s no place for any more empty rhetoric promising improvement but not delivering it.
Pat always fought hard for change too.
She found her way into becoming a psychotherapist through struggles of her own.
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When I was a troubled teenager, autistic but destined not to discover that for another four decades, Pat found ways to connect with me and made me feel that I mattered and I belonged.
Who knows how many other lives she saved through her quiet wisdom, compassion and kindness?
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At the funeral yesterday I also discovered how the kindness of my Dad over fifty years ago left a lasting impression on someone else’s life.
Seeing them clasp hands and acknowledge what they meant to each other brought tears to my eyes.
Life is short.
The years slip by.
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The funeral Pat had planned was a final act of love.
As a psychotherapist she knew the difficulties we face when we are confronted by death and dying.
Even though I don’t share her Christian faith hearing the familiar prayers I remember from my childhood was very comforting.
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In his poem Shadows, DH Lawrence wrote about how in sickness and in misery he found ‘snatches of lovely oblivion, and snatches of renewal
odd, wintry flowers upon the withered stem, yet new, strange flowers
such as my life has not brought forth before, new blossoms of me,’
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I can see why Pat chose this poem for her funeral.
It reflects her affinity with the natural world and her faith in god and the human spirit which sustained her throughout her long life.
A blackbird is singing as I write this.
It’s a new morning. 24/ end
#Thread
#Autism awareness and acceptance really matter because stigma, prejudice, and lack of trauma informed, ‘experience sensitive’ approaches perpetuate structural inequalities and injustices.
In my locality #SocialCare needs of autistic adults come under the #MH service.
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I saw an unqualified Assistant Psychologist in the #CMHT after my #autism diagnosis.
I wanted help with the existential crisis of late autism diagnosis but ended up being gaslighted.
I realised what was going on and discharged myself after explained what iatrogenic harm meant.
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A few months ago a combination of factors (none of them to do with mental health) meant that I needed social care support.
Because I am #Autistic I was told that my assessment would be carried out by the MH team.
I was so traumatised by my last contact with them I declined.
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#Thread
Adjusting to a very late in life #autism discovery.
How my life has changed 5+ years on.
Like many #Autistic people I had experienced repeated episodes of #burnout and #trauma.
By the time I reached my late 50s I was exhausted.
I had no energy to get going again.
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This quiet breakdown could easily have gone unnoticed or been explained by a number of other things.
I’d always been quirky and different, a highly sensitive, deeply empathic person.
My distress could have been attributed to a personality issue, or to anxiety
and depression.
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Through good fortune and serendipity I found my way to a service that helped me to start making sense of my life.
The process of acceptance, adjustment, and self-advocacy has continued since then.
It’s not enough for me to adapt, other people need to make accommodations too.
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I feel blessed to have reached the age of 64 with much of my life still intact.
When everything began to unravel in my 50s it wasn’t clear why.
My career (which had been reasonably successful, if somewhat disjointed) got derailed.
My personal life started falling apart too.
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Without understanding why this was happening, it would have been impossible to remedy the situation.
I’d have carried on pulling at the loose threads until there was nothing left at all.
Discovering that I was #Autistic gave me the answers I needed to start to repair my life.
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What needed fixing wasn’t me, it was my living and working environments, and communication between me and other people.
Although I’d realised that interpretation and translation prevented misunderstandings, I hadn’t recognised my language and culture were distinctly Autistic.
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On the second anniversary of my #autism diagnosis I wrote a thread about #bullying (not realising that it was my #autieversary at the time). It was very appropriate though, as bullying and abuse have had a huge impact on me, especially in adulthood. #ActuallyAutistic 3/
#Thread
Rebuilding a career after a late in life autism diagnosis.
Personal reflections of a very late discovered #ActuallyAutistic person, 4 years on.
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Burnout was a factor in me finally finding out I was autistic.
I’d become overwhelmed and exhausted.
I’d drifted to a halt, and then couldn’t get going again.
I was overloaded by being bullied at work, being in perimenopause, unresolved trauma and my partner’s serious illness.
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A demanding new job immediately after my diagnosis didn’t kickstart recovery from burnout like it would have done previously.
What the psychologist had told me about taking ‘baby steps’ was true, even though I didn’t want it to be.
I finally realised I couldn’t afford not to.
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#Thread
Why it’s sometimes difficult to know how unwell I am.
A personal autistic perspective.
I’ve been feeling rotten since Sunday, with some kind of respiratory illness.
After 3 years of respite from colds and flu it came as a bit of a shock.
I haven’t had Covid yet either.
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I wasn’t too worried to begin with, as my partner was ill before me.
After 2 or 3 days he started to feel better, and I assumed I’d be the same.
Unfortunately I’ve been getting steadily worse.
Less energy.
More coughing.
Less desire to eat.
More sleeplessness.
Strange pains.
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I’m almost always in some kind of pain so that in itself isn’t a reliable indicator of being unwell.
Nor is severe fatigue, which occurs so regularly it seems normal.
I rely on objective symptoms like fevers, rashes and swellings.
Tests are a bonus, if they are available.
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