In No Time

Time was something Mum obsessed over. Like the White Rabbit in Alice’s Adventure’s in Wonderland she would pace back and forth before she needed to be anywhere, checking her watch and her father’s old carriage clock and the grandfather clock in the hall, muttering over and over, “We’re going to be late!” 

No wonder, perhaps, that I seem to have inherited this trait. It drives my family mad. I have a preference for being at least five minutes early for any appointment and get tight-chested and prickly with panic if stuck in traffic, watching the minutes race on by. 

It’s a slippery thing, time. And the older I get, the more wily it becomes. Was it really five years ago today that Dad died? Because if I focus on that morning, not dissimilar to the one I can see today through my study window – quiet and still, the light low and golden – I can put myself exactly where I was and the years roll away and I am back there, by his side, watching his time run out.

Five years ago today time was of the essence. I had woken on the first day of a holiday on a remote island in the Chumphon Archipelago to a call from my sister to say that Dad had only 36 hours left to live. A quick calculation revealed that I would need every last second of those precious hours to make it back to the UK in time to see Dad before he kept his appointment with death.

I went to the beach while my husband raced around getting a taxi and booked a place on a ferry for me. The taxi had to arrive in the next ten minutes or I would miss the ferry. Oh, my fur and whiskers! While my husband rushed, I forced myself to walk slowly along the white sand. I picked up pieces of coral that looked like bleached bone. How was it possible that I was on a beach under an early morning tropical sun, while my dad was lying in a bed in the middle of the night in Kent, waiting to die. Had we done the maths right? Would my time-travelling across the zones from east to west get me to Dad before it was too late?

Thirty-six hours is not long. A day and a night and a day. Time that is easily wasted. I could spend thirty-six hours doing nothing but read, eat, sleep, repeat. Thirty-six hours is also the longest period of time a person can endure. I know this twice over, because my daughter took thirty-six hours to arrive into this world and there was not one second of that time that was not stretched with pain and fear.

In the end it did take exactly thirty-six hours for me to get to that bedside in Kent from that beach on Koh Tao. Thirty-six hours of excruciating minutes that crawled across the face of every clock I checked as though a curse had been put on them; as though I were living out a nightmare in which I was filled with a desperate need to reach my destination, but my legs were filled with lead and no amount of effort on my part was going to get me there fast enough.

I should have been used to this feeling. I had spent the past three years running on lead-filled legs, pushing boulders up hills only to have them roll back down and flatten me, time after time after time. Mum had been sick for so long by this point it had become normal to wake every morning weighed down by dread over what the day would bring. And then Dad’s cancer had crashed in and ripped the fabric of our lives apart and honestly there were days when I wanted to throw my head back and laugh like the mad women my mother was sharing a ward with.

Time played tricks on me over and over during that period. At one point in the early summer I was driving to see Dad in hospital and I completely forgot what month it was. My teenage kids seemed to suddenly skip a couple of years overnight and become young adults before my eyes. My skin wrinkled and my hair grew white as I stared at my reflection. A year disappeared in the blink of an eye. 

I wasn’t too late in the end. I walked into the darkened room where Dad lay, and exactly one hour later he drew his last breath. A breath so deep it took every last ounce of energy from him. It was, quite literally, his last gasp. Sometimes cliches are the only way to go.

Now it’s five years later. Five whole years of breathing and sleeping and reading and writing and eating and playing and laughing and loving and crying and remembering and grieving and living. Five whole years without Dad. And two and a half without Mum. And yet it’s not five years. It’s a nanosecond. A wink. A shiver. It’s as though it were only yesterday. And long may that feeling last, for as long as I can hold them in my mind’s eye, they will still be here, Mum and Dad. Together. Time without end.

Lockdown

I haven’t written about you for nearly a year, but don’t think I haven’t thought of you. I think of you, Mum, and you, Dad, every single day. In fact – if only I could tell you – I’ve written a book about you both. It will come out on 3rd July, almost five years since you died, Dad. The title mentions Mum because the ‘hook’, as publishers like to say, is her and her late diagnosis of autism. It would make you chuckle, Dad, I think: we always said, “It’s all about Mum.” She always came first because she had to. Even when you were dying of cancer. She needed us more than you did. Or so we thought.

I have had a lot of time to rethink things during lockdown. If you were both still alive now – if you were both still alive and sick now – how would you cope? Mum would be frightened to go out because of the virus, so at least she would agree to stay at home. She wouldn’t want to touch anything that had come in from outside, though, so would that mean that you, Dad, would be tasked with disinfecting everything over and over and over until you could reassure her. And if you had just come out of hospital after your first operation to remove that tumour, would you even be able to do the things Mum needed in order to feel reassured? And what about you? What about your care?

I think about how eaten up with worry and guilt I would be, not being allowed to travel to see you. I would be sitting here, looking out at blue skies, enjoying being with my kids and my husband, all the time knowing that you are shut in, together, both in pain, both suffering, both, in your separate ways, alone.

There are so many people living through all this right now. So many elderly couples, leaning on each other, each staggering under the weight of responsibility and care. So many middle-aged children, wanting desperately to see their parents and prevented from doing so. And so many more who have had to learn of a parent’s death from afar.

I haven’t written about you, but I think of you and I think of all these other people, suffering as you did, but with the added burden of lockdown. And I quietly give thanks that you were at least spared this.

**

My memoir A Place for Everything: my mother, autism and me

is published by HQ Stories on 3rd July.

Available for preorder from Waterstones, Hive and Amazon now.

Failing to Reappear

Almost two years have passed since Dad knew he was dying and Mum stopped coping with life. Almost a year since I started writing about it. There are still times when I struggle with accepting what has happened. How can Dad be here one minute and gone the next? How can Mum be here – and yet not be present?

There have been times when I have half-convinced myself that once that I have gone through this grieving business and come out the other side, things will go back to normal. My mind plays tricks on me. I catch myself thinking I might pick up the phone and talk to Dad. Or Mum might get better and not need to be in a care home any more. The house will still be there for me. I will be able to go back. In time as well as space.

Sometimes it is a relief to sleep and not think of these things. Unless, that is, I dream. A recent nightmare had my parents back in their house for a visit after my sister and I had started to clear it. Dad was cross that I had been in his study, through his desk, through his neatly filed paperwork. Mum was jubilant. “Thank you so much for getting rid of all his books!” she told me, beaming. “I have been trying to get him to do that for years.” And in the back of my mind, a panicky voice was saying, “But we’re selling the house. Mum is supposed to be going back to the care home. Dad is . . . Dad is . . . Dad is not coming back at all.” I woke up with a gasp, reality rushing back in.

Dreams like this play on my feelings of guilt in the dark early hours. My thoughts spin on a destructive loop: Dad would not be pleased with what we have done since he died. We should have found a way to keep Mum at home. We should not have sold their furniture and given their books away. We should have found a cure for Mum. What would I say to Dad if he asked me? He would not like her being on a dizzying cocktail of drugs ranging from anti-psychotics to anti-depressants to sedatives to sleeping pills and goodness only knows what else. She has Asperger’s Syndrome. We know that now. That is not a condition that needs drugs. It needs sympathy and understanding and help with learning coping strategies. Doesn’t it?

Except that, it turns out, things have moved beyond that for Mum. She is so deeply locked into her own world now that tinkering with her drugs, trying to withdraw them, makes things worse for her. Hellishly worse. It has been tried and the results were terrifying: disorientation, panic, fear, hysterics, physical instability. And so she is back on the pills again. Back on her bed. Back in a state of drug-induced calm. And we have been advised to accept this. To realise that this is what is necessary. Because we will never have her back the way she was.

I went to see her yesterday. On the train from London I stared out of the window at landmarks familiar from my childhood: the station names I could recite by heart, the fields, the white weather-board and red-brick cottages, the Oast houses, the orchards, the river. I felt the familiar weight of sadness in my chest. Mum was always so proud of being a Kentish Maid. She would lecture me on the county’s history. Now she doesn’t talk at all, other than to ask me to leave.

After my short visit, I went to sit by the river where we scattered Dad’s ashes. “The house will be sold next week,” I told him – almost two years to the day that he rang to tell me his cancer was terminal. Once Mum has gone, will I have a reason to return to Kent ever again? Will I really make the trip just to sit on that riverbank and gaze into the silt and think of Dad paddling by this spot in his canoe? How can I accept the way things are? How can everything have changed so quickly? How it is possible that Dad is no more? That Mum has turned her face to the wall? Surely I could have prevented it?

The night before I had gone to see “Rosencrantz and Guildenstern Are Dead”. A few lines from the play echo in my mind as I stare into the muddy water and try to hold on to an image of Dad and Mum as they were:

“The fact of [death] is nothing to do with seeing it happen – it’s not gasps and blood and falling about – that isn’t what makes it death. It’s just a man failing to reappear, that’s all – now you see him, now you don’t, that’s the only thing that’s real: here one minute and gone the next and never coming back – an exit, unobtrusive and unannounced, a disappearance gathering weight as it goes on, until, finally, it is heavy with death.”

A disappearance gathering weight as it goes on. Yes. That is it. An acceptance is necessary from now on. An acceptance of Dad’s never coming back. And with that, the acceptance that Mum, as we knew her, isn’t either.