On New Year’s Day, something significant happened to my mother. People have described it in various ways: she “passed”. She “passed away”. We “lost” her. She “went”. She “passed over”. She “went to a better place”.
Screw that. I’m autistic, and I have no patience for such euphemisms. Let’s call it what it really is: my mother died. Her body stopped working and all her bodily processes ceased. Her brain became permanently inactive. She is not “at peace” or “resting” – she is dead.
She and my stepfather had tested positive for Covid-19 several weeks previously, and soon both of them were in hospital on a high-dependency ward. Thankfully my stepfather slowly recovered, but my mother didn’t. She developed pneumonia, then sepsis. By the end she was unconscious in Intensive Care, intubated and on 90% oxygen, undergoing haemodialysis as her kidneys failed. After several weeks of her being stable, we were told by hospital staff to expect the worst as her condition went downhill rapidly. Then came the dreaded phone call to inform us that my mother had “passed away”. None of us had been able to say goodbye to her. She died alone, apart from a nurse holding her hand – not that she knew it, because by that point she had been unconscious for over a week.
So that’s the situation. It’s heart-breaking for those of us who loved her, but it happens to us all at some point. Pretty much anyone who survives to adulthood has to go through the pain of bereavement sooner or later, and devastating though it is, it is a normal part of life. There is no end of books, articles and online help sites to support those who have recently experienced the death of a loved one. However, if you look for resources to support autistic people who are grieving, you won’t find much. So what is it like to grieve as an autistic person?
Well, like everyone else, we feel the person’s absence keenly. I’ve gone through cycles of crying, disbelief, acceptance, depression, anxiety and everything else you would expect a grieving person to experience. The added difficulty is that this causes extra pressures when you’re autistic.
The most obvious issue for me is emotion. Even in more normal times I feel emotions very strongly, although I don’t generally understand them very well. Now, though, the intensity has ramped up to unbearable levels. How do I cope with these huge waves of crushing emotions that I don’t understand? Well, I don’t. Predictably, I end up either in meltdown or shutdown because I become completely overwhelmed with strong emotions. This been happening a lot over the last few weeks, whereas in more normal times I rarely have meltdowns. It’s worrying, especially as my wife – who is also autistic – is going through the same process as well (she and my mother were close).
Then there’s the sudden changes and loss of routine. Things that were fixed points in my life aren’t there any more. I’ve gone from being someone’s child to being the senior member of my immediate family literally in an instant. Along with my stepfather, I’m having to make decisions about funeral arrangements, write tributes, contact family and goodness knows what else, and I don’t even have the normal routine that work brings.
Yes, I’m off work as well. I took the 5 days’ bereavement leave to which I’m legally entitled then went back to work, but I soon realised that I couldn’t cope. Brain fog was clouding my ability to think and focus, and tasks that would normally have taken ten minutes took me over an hour to complete. In the end I had to tell my boss that I couldn’t work. My doctor signed me off with anxiety and depression. When you’re an autistic person who has always had the ability to hyperfocus, having a pervasive brain fog that prevents focus completely is quite distressing.
Perhaps the biggest challenge will be next week, when we attend my mother’s funeral. Or rather, when some of us attend it. The current Coronavirus pandemic means that we can only have a limited number of people physically present, and many members of the family and friends are clinically vulnerable and thus unable to attend anyway. Luckily, the crematorium provides a live feed for those who can’t be there. The funeral will be a difficult experience, and I fully expect to be a total mess afterwards.
So how do I cope with this? The truth is, there are no easy answers. There is no avoiding grief; the only way out of it is to go through it and fully experience it in all its painful, overwhelming reality. I know that I will come to terms with my mother’s death eventually, but it’s a long and painful process. For anyone going through the same thing, I don’t have any easy answers. All I can say from experience, having gone through bereavement before due to the death of my father and all four grandparents, is that it will get better – eventually.
I’ll finish with a poem that I wrote following my first visit to my mother’s house and her crafting shed following her death.
Sit where Mam once sat.
Touch the things that her hands touched –
Remnants of a life.
This place once was hers,
Her domain once, now empty.
Only void remains.
Leaves of Autumn trees
Fall, and once they leave the branch,
Never can return.
Such is fragile life.
Feel the bite of bitter truth:
All who live must die.
Winter follows hard,
Bleak despair of icy grief
Freezing in the veins.
Yet, in time to come,
Winter’s ice begins to thaw;
Spring returns again.
Autistibuddies 