Of Complex grief, for an Autistic Individual: part III

There are many times when words just could not suffice in how to articulate the level of pain one is holding inside. Some grief are Wordless, yet, the Pen will insist on presenting it out.




For an autistic (or, if you like the Pun, "Artistic Autistic") the outward expression of grief is subtle. I do not like to cry - mostly because it serves almost no biological function apart from making my eyes hurt, my nose run, and I will feel absolutely crap afterwards.

So I draw, I write, I make things, I run, I learn, I polish my mastery on skills that I have picked up.

And I try to live up to the embodiment of the Best Quality/Value I admire the most, of the person/creature whom I have loved dearly, and lost.

Vaska represented Courage and Trust, to pick up where you left off, and Move Forward, despite the physical challenges, and traumatic past, and to Live to your Full Potential.

He was a severely abused kitten when I got him - the shelter (a no-kill one, Woodgreen Animal Shelter, London, UK) had labelled him as "Unadoptable" due to the trauma he had. It was love at first sight for me. This scared kitten, looking at me with his Big Scared Kitten Eyes, and maybe, in him I saw a reflection of myself - traumatised, ill, in pain, feeling rejected and unwanted. I wanted to make sure that this little scared ball of fluff does not have to continue to feel that way. And so I took him home.

I learnt to forgive myself, and be patient with my illnesses and health challenges, and to move forward, within my envelope of capabilities and challenges. It wasn't easy, but with Vaska I wasn't doing it alone. Every night, he curled up on my legs to sleep - he bolstered my courage to face pain, the disabling limitations of having a connective tissue disorder( Ehlers-Danlos III with Marfanoid crossover), several of autoimmune diseases, on top of being on the Autism spectrum and it's associated co-mobidities (depression, anxiety, ADHD, sleep disorder).

The summer before Vaska's cancer exploded, he finally gained his full "adult cat status" - i.e. he managed to chase down SquirrelPop (resident red squirrel who lives in the Garden Shed) and "tapped" SquirrelPop on the head with his paw. Which of course resulted in a Very Angry And Violated Squirrel Chittering Her Protestations From Atop The Spruce Tree.

But he did it. This little brave cat did it. He "Lived" a fullfilled Cat-Life, despite his pain, trauma, challenges. What an absolute Hero.

And so, I will take his lead, and Live.

Of Complex Grief, for an Autistic Individual: part II

DARK

The slippery thread of crystal thought
slip't and fell upon the ground -
what little sanity I sought
instead, of madness, that I found.

The time froze still and thread does break
the ionic imps, my nerves are raw
What once a mirror'd shiny lake
is now a dark and gaping maw

Drips with dark, dank fearsome shades
Taints the lake, and boils it dry
but still I wander there of late
Once full of dreams, but now of sighs.

The memory of shining waters though,
beneath the shadows bleak and dark
one wishes for a glint, a shimmer, through
in life so hopeless and so stark.


(unpublished, 16 January 2016)

Blunted and Broken

My life is like a broken pencil -
it is pointless, blunt, devoid of meaning.
What once was making strokes of ideas -
Is now void, empty, and broken.
What point is there to holding on-
To a piece of broken graphite crayon?

The broken pieces of lead in my hands-
reflects my broken body, soul and mind.
What point is there to holding on-
To a piece of broken graphite crayon?

The smear of lead upon my sketch -
Empty but for the carbon smudge.
waiting for Thanatos to fetch
from this meaningless painful trudge.

Again, I beg, Thanatos, be quick!
death is preferrable to endlessly sick!
What point is there to holding on -
To a piece of broken graphite crayon


(unpublished, 7th Feb 2016)

The Caged

I now know well, why caged birds sing;
Especially ones with broken wings.
It's not for joy, the notes was wringed
it is a tale of suffering.

For, once, in time, the bird flew free
With joy and innocence, tree to tree
With feathers, the colours, sun-lit glee
But now is nought but memories

The shining feathers oh so pale,
So limp and dank, what once was hale.
Desolate wheeze with each inhale
sung caged bird, of deathly tale

I now know too, why caged ones sing-
Each mournful sigh, a note was wringed:
For beautiful music comes, from pain it brings
The reason it's snared, and broke both wings.

(unpublished, 15th May 2017)




Another

another day another lie

another day I did not die

another day I could not cry

another teardrop within a sigh

another time for me to try

another time another try

another day I did defy







(published, 25th April 2019)

Of Complex Grief, for an Autistic individual, and of new chapters: part I

I think it has come for me to open up a little bit on why these pages fell silent, for so very long.

For example, this very blog article was started last year in November, with the above one line, yet was never finished nor published. I digress, let me assure you that the writer is Writing, if slowly and hesitantly.

Dear readers,

roughly 3 years and 7 months and 1 week ago, I buried my father. 
   - and the preceeding weeks and months, helped make medical decisions on his final stage cancer palliative care.

roughly 3 years and 2 days ago, I put Vaska, my lovely Bugball cat, to sleep.
   - and in the preceeding weeks, nursed him through his final stage palliative cancer care

roughly 3 years and 2 months ago, I had my ankle reconstruction surgery, which was considered very high risk for me due to my connective tissue disorder, very nearly did not make it.
   - and in midst of recuperating from this, I discovered Vaska had a fast growing adenocarcinoma.
   - and while I was recovering from the high risk surgery, my father's traumatic death, I provided  
     palliative care to my dying, severely in pain, cat, and then took the decision to give him release.


So for 3 years I have been carrying these intense, Complex Grief within me, and it has silenced the Writer with Pain, that every time I tried to write something to express or form a safety valve for my grief, the tears will well in my eyes and my heart hurts with the most intense of pain.

I decided to write about this as a way to elucidate my own comprehension of the grieving process, from the perspectives of:

(i) an Autistic individual, 
(ii) a Clinical Scientist, 
(iii) a person with several physical disabilities 
(iv) a person who is a Stranger in a Strange Land 

I am living in Sherbrooke, Quebec right now, for work, and I have often wondered on why I made this move here. I knew I had planned for this for 4 years (not Sherbrooke, specifically, but going back into my field - Medical Physics/Bioengineering), and yet, here I am, feeling extremely lost.

Very little thing hold any pleasure for me anymore.

And that, is the sign of Depression, which often comes with complex grief. For a neurotypical adult, the resolution of Grief follows the familiar five stages as outlined by the Kübler-Ross model:

denial, anger, bargaining, depression and acceptance

However, very little literature is available on how an Autistic live through Grief, and hence I'd like to perhaps contribute a bit more into the body of knowledge on how, we, as Autistic individual face, live and move within this "painful inertia" that we call Complex Autistic Grief, with the hope maybe another ASD looking for answers can glean some tips and comfort, that they are not the only one who have "weird manifestations" of grief due to our uniquely wired brain.


Since we are neurologically distinct from our NT (neurotypical) peers, our trajectory are different, as are our remediation and recovery. It is not uncommon for ASD to grieve so much longer than the NT, nor is it uncommon for the "grief" to hit us so much later.

Prior to my being diagnosed as ASD, I have found strange solace in "dealing"  with the trauma of Death in the Family by locking up emotionally. Which is unhealthy, of course, yet that was the only option I can use because I found that the act of "crying" like the rest of the NT relatives or friends do does not provide me with the emotional relief that it did for them.

In fact, I have said to my doctor and counseling therapist "crying at a funeral, or when receiving news of the Death of a family member only makes my eyes hurt. I don't feel any better"

What I did, the first time a family member (grandfather) passed away when I was around 8 yrs old, I dealt with the "grief" by reading up on all funerary rites from as many cultures/religions as possible. And what were their views on "criteria for Good and Evil" -- i.e. the judgement of a Soul upon Death by (an Entity)

I remembered my 8 yr old self burning Hell Notes (after the Chinese Tradition)
I remembered my 8 yr old self reciting words from the Tibetan Book of the Dead, and hanging Prayer Flags
I remembered my 8 yr old self trying to Find Out from my Grandmother if Grandfather is Happy with his life, so that his Heart would weigh less than a feather when he meets Anubis with his Divine Scales.


I did not know at the time I was on the Autism spectrum - but these are the type of things that an ASD person do to "cope" with very intense emotional pain. We try to intellectualise it into a form we can understand, and make peace with Death and Loss in ways that probably look strange to our Neurotypical Friends.

And to my non-neurotypical readers, do what you think is right for you, for what you think can alleviate your own grieving pain. For me, as an adult, now, I read as many scientific publications, work on different methods and testing the hypotheses, and ask as many philosophical questions, to my mentors and betters, to see if I can contribute somehow into lessening the pain in other people's suffering.

Sort of a convoluted way of providing myself with comfort, but it is working. For in my works to reduce pain, whether it is physical or emotional, I meet other people who are as sensitive as I am. And they look after me when I'm not strong enough to carry on alone.

You guys know who you are. I thank you from the bottom of this Grieving, painful heart.



Resources on Autistic Grief:
1) Navigating Grief and Loss as an Autistic Adult by Lynn Soraya
2) Autistic Grief Is Not Like Neurotypical Grief by Karla Fisher
3) Bereavement by National Autistic Society, UK

In the Quiet and Stillness

This awkward Dance, 'twixt you and I-
The quiet glances, the secret smiles;
What lies in store, down Minkowskian line-
Will we part ways, will be I, in arms thine?

The lives that run in parallel ways-
Connects yet not, despite their goals;
Just aether-bound in mutual Love-
For frontiers seen not by other souls

As Rumi did orbit, adoringly, Tabrizi's Shams-
A mutual Love kept pure and whole;
Never to feel thine, warm strong arms-
Pulled away, yet still, by my Duties and Goals.

So Dance I do, this awkward way-
From afar, my thoughts for you today;
These Words, to you, I shall never say-
In the Quiet and the Stillness they shall stay.