I've been reading through the book I've written about my months spent caring for mum during her last illness. I came across a piece I thought I'd post in case others might identify with it. In it, mum, myself and my brother are on our way back from the hospital following mum's final renal clinic appointment. Her renal function was now so low that the consultant had discharged her from the clinic because there was nothing more he could do for her. It was the final realisation that she had very little time left. She passed away just a few weeks later...
As we drove home, mum was upbeat. "Well, that's positive, anyway. I don't have to come up here any longer."
I didn't comment. Neither did Russell. If mum wanted to look at it as a positive thing, then that was good. As long as she was happy.
For myself, I felt like my head had just been pushed back into a box. All I could see was the wall of that box - directly in front of my eyes. All other events and sensory distractions had been cut off. I couldn't think about next week, the next day - the next hour, even. Just this moment. This moment, connecting up to the next moment, then the next. I thought of that scene in Mike Leigh's film Naked, where the David Thewlis character - a mean, angst-ridden drifter - is trying to explain to a night security guard the contradiction of the ideal moment being the present... because it doesn't exist. Because it's the future. The present is forever being displaced by the future, when the present will become the past. I wanted to stay here, in this present, where things were reasonably alright. I didn't want to think of the future. Yet here it was - right here. Time moving on. That road sign we were approaching. We would drive past it in the future... here it comes... here it comes... And then we were past it, and the future was the past already. If we'd been driving slower, passing that road sign would still be in our future. But it wouldn't have changed anything. We couldn't slow down what was going to happen anyway.
And that was it. Nothing could be changed. Death was the inevitable end of all of us. But we were forever putting it off because we had to concentrate on getting through our day, and looking forward to something. The weekend. A holiday. Time to ourselves. 'The present' as a concept in our minds expanded to take in large amounts of time - hours, days, weeks. Until something drastic happened to disrupt that forever. An accident. A diagnosis. The death of someone close. Things that would change our lives, put them into perspective, force us into confronting the actuality of it. We took it for granted, until something like that came along and shook us out of our complacency. Our apathy. Made us face up to the inevitable. And then, what would we do? Everything we could to change it back to how it was - find the cure somewhere - at the same time as eking every second out of what was left. And it was all still futile, anyway. Whatever we did, it was still going to happen - sooner or later.
I wanted mum to go on for as long as possible. I didn't want to think about life without her here. She'd always been here. Life without her was an unknown. A chasm of unknowing. How would it be? What would happen? How would I get through it? I didn't know, and I couldn't think about it. It was back to the present. With what we had. With her still here. The present, which was really the future. Which would soon be the past. That's how my life would be then, I thought, when she wasn't there. I'd always look at it as 'before' and 'after'. Mum's life and death were the two conditions. Before, when she was alive, and after.
The therapist I saw a few years back - the one who first recognised what she thought were symptoms of autism - once asked me how I would feel when my mother was no longer there. When I no longer had that attachment; that anchor. I mentioned to her something I'd read in an Annie Proulx book, when she talks about a character's being 'loosened into his life' by a major event. I said I thought that was what it would feel like. My life would be mine, to do with as I wished.
"It is now, isn't it?" she'd said.
I knew she didn't actually believe that. She knew the situation, and how strongly I felt the responsibility - so strongly that it had defined my life.
"Yes. But it's also constrained. All our lives are, in one way or another. Money. Work. Education. Mine has this thing of responsibility to the person closest to me, which is too strong to break."
"So... what do you think will happened when the time comes? When you're 'loosened into your life', as you put it. What will you do?"
I had vague ideas at the time, partly driven by a need to break away completely from what I'd known thus far. Safety and security. Constraint. Society as I knew it.
"I'll probably just sell everything. Get rid of it all. Go back to scratch. Then I'd pack a rucksack and go."
"Just go. Wherever the road takes me. A refugee camp. A war zone. Anywhere that people might need help, and where life was so different to how it is here. To experience it a bit more. And..."
She looked at me. "Yes?"
"And... if anything should happen to me in the process. If I should get killed, for instance... then so be it."
"So, you're saying you wouldn't care what happened to you."
"I would. I'd take reasonable precautions. I wouldn't be needlessly reckless. But if you go into something like that, you're naturally increasing risks by a huge amount. More risks than you have otherwise, probably, by staying like this. A road accident. A house fire. Tripping over a rug. Cutting your finger while preparing dinner."
"And you seriously think this is what you might do, with the world as your oyster at last?"
I shrugged. "I don't know. But it's how I feel impelled. To not just take myself out of my comfort zone, but catapult myself out of it. Put it this way, the society I'm in now doesn't offer me much. I mean, I'm not drawn at all by the things that most people in our society are. I'm not interested in money, or property, or possessions, or climbing the career ladder. I don't aspire to better myself materially, and keep up with or surpass everyone else. I don't want things to be so complicated that I can't keep tabs on the responsibilities. I have to have time to myself, and too much of everything takes away from that. I lose control of it. My order breaks down and becomes chaos. I like things to be basic and simple. 'Austere', as one of my exes put it. That way, it's easy to move on from. It's easy to leave behind. I'd miss certain things about my life, but it wouldn't be the loss for me that it would for many. I've never really felt like I've fitted into this society, anyway - right from childhood. It's always felt like a slightly alien place that I'm being conditioned to accept, rather than a place I want to be by choice."
It probably wasn't any wonder that she started to think, after this, that autism was at the root of my issues.
And now... what did I feel about it all? The circumstances were different, but once again I was back to that place of being told that things weren't good. That mum was draining away. The improvement before Christmas had picked me up - and now, suddenly, I was dropped again. All I could do was seize the moment - seize each moment. Keep it in the hour and the day. Leave what comes afterwards to when it happens. Also, I suppose, it was a part of my overall reconciliation to it. My acceptance. Deal with what's here, right now - mum as she is, and still alive.
Deal with the rest when it comes.
Dear Tom,,,,,,,thank you,thank you so much, You have echoed my story with my mum,very few differences, my life with my wife and children was put on stop when mum got really bad, I didn’t live with mum, my younger sister was living with her, I visited every single night till the end, taking whole days off work to run her to an appointment, My siblings refused to accept how ill she was, me being clinical researched every pill she took,the constant changing of meds as they tried to balance side effects, the tests I would research to find out why, I knew so much but couldn’t change the final inevitable outcome.
I did so much, I am glad I focused my entire time with mum, going there straight from work and getting home long after midnight,
Mum had a phone call one day,it was one of her specialists who had done more than most to try and get my mum extra help. My mums hearing was not good, I took the call for her. The lovely lady asked who I was in connection to mum,I told her to which she said” ah you are the son who understands what is going on with your mum” She asked cautiously if I understood the extent of what was going to happen soon? I went through what I had learnt and told her I knew it was not going to be long,
She asked to speak to my mum, I gave mum the phone and could hear the lady raise her voice to talk, my mum said” ok my duck,thank you so much for everything you have done,goodbye. With that as she sat on the kitchen floor she grabbed me and pulled me close,she had been told she hadn’t got long left, we just sat there holding each other,no words just both understanding,
We always had a connection that was unspoken, I miss her so much.
Thank you Tom so much for reminding me of that precious moment.
Tom this my first visit to the forum. I've come across a couple of your replies and found them enlightening and inspiring.
The piece you've posted here is an amazing piece of writing, which made me cry for several reasons. You are very talented. Do you write for a living?
Yes Tom and Lonewarrior that does ring very true for me too. Im still am affected by dreams and flashbacks. I tried to write more to share with you but it’s too painful. As Lonewarrior says, thank you for sharing. And it’s good to see you back on the forum.
Missy thank you for telling of your pain,I felt pain while replying to tom,I had tears as I typed it, I still want to hear and be heard, it reminds me I am emotional, these are emotions we feel, we are deep people, we do not deserve the misguided label of,shows no emotion,has no empathy, it upsets me when I still se such words, written by non autistic people,
I hope some of them get to read the true us, it may change a few perspectives for the good. Xx()(), keep writing tom,it gives you and us a voice.
Thank you Lonewarrior. One day when I have a less fraught few days I will try to share more. Maybe I should try to let it out in writing... losing a parent for anyone is often painful but when the connection is strong and still very much mutually supporting and Aspergers is part of the mix it’s traumatic. Mum’s been gone nearly 3.5 yrs but there isn’t a day goes by that I don’t think of her.