Paula Dyson

The following story is written by Paula’s son, Anthony.

I still remember the night my sister called me in tears. She was panic-stricken and unable to get her words out.
“Michelle. What. Is. Going. On?” I punctuated every word to try and get through to her.
It was January 2023, pitch black outside, and that was the first night (but by no means the last) that I was too scared to sleep.
“It’s mum,” my sister finally said to me through tears. “She’s been rushed to hospital… we think she’s had a stroke.”
In that small moment, I could feel the pulse in my brain, and my skull felt like it was shrinking. I was living in Manchester by that point, while the rest of my family were in West Yorkshire. Even though they weren’t hundreds of miles away, in that moment it felt like we were on opposite ends of the earth. I was unable to do anything other than sit there and worry.

In the days that passed, I remember telling people at work about how my mother had a stroke despite only being 57. Each of those initial days, her condition slightly improved. Due to me being put on antidepressants previously, there was a large part of me that was numb and unable to feel the sheer amount of stress and pressure I knew I should’ve been feeling, especially considering how eventful the next couple of weeks were. Then everything changed…

There was only a 2-week difference between my mother being rushed into hospital that night and her passing, and in that time, the illness ravaged her so completely. Someone who had been funny and fierce and knew exactly who she was became a shadow of her former self. She would only eat bananas and drink Coca-Cola.

I remember the day I visited her in the hospital for the very first time. She was still very much aware of what was happening; she had just developed blindness in her peripheral vision, so she was only aware of what and who was directly in front of her. My uncle came to pick me up, and we drove from Salford to the hospital she was admitted to in Wakefield. When we got there, we all got refreshments—teas, coffees, the usual. I just got a drink of water. I had a couple of sips of the water, and my mother was thirsty, so she had some too.
This bottle of water became a symbol of the whole experience for me, as when I got home, I put it on the side—where it still was 2 weeks later, after my mother had gone.
At the hospital, all the family gathered round her in her wheelchair as we spent the day chatting and laughing. She saw me and held on to me so tightly as she cried. She was so scared, as she (as well as everyone else) had no idea what was wrong. The doctors and nurses had ruled out a stroke, and they were putting the strange symptoms down to her Fahr’s disease (a disease where calcium deposits form at the brainstem), but even they admitted that Fahr’s wouldn’t be doing this—so they were none the wiser.
As the day drew to a close, my sister and I helped my mum back into bed, which would become the last time I saw her stand up and walk, as over the next few visits, her condition worsened and worsened…

In the weeks that passed, everyone at work became more and more worried about me, to the point where, as soon as I told them I’d like to go spend time with my brother and sister, they allowed me to work from my mum’s flat. I was only meant to be in Leeds for four days.

On the Monday, the first day of me working from my mum’s flat, my sister, brother, and I visited my mum, and I knew in my heart that this would be the last time I saw her.
Her condition had gotten much worse, and when she initially saw me, she couldn’t remember who I was and looked at me like a child looks at a stranger—with fear. It didn’t last long, and she was soon laughing and joking and calling the nurse who brushed her hair a bit too hard a ‘bitch.’
It was soon time to go, and I honestly could’ve held on forever in the moment. I knew this would be the last time I would hug her and feel her presence. I knew that these next few words would be the last exchange we would ever have:
“I love you, Mum,” I said.
“I love you more,” she told me.
My very last words to my own mother, the one who had given birth to me and supported me unconditionally, were: I love you most…

On the Wednesday, I remember my sister coming into the living room of my mum’s flat, sitting my brother and me down, and telling us that the doctors had seen a shadow on my mum’s brain. I heard ‘shadow’ and instantly thought ‘tumour.’
My sister told me that it wasn’t a tumour, and a brief flash of relief hit my brain. The relief didn’t last long as she soon followed up with, “The doctors have asked all hospitals in the UK what this particular shadow could be, and one hospital from Edinburgh has responded. They’ve seen this before and it’s something called CJD.”
And then, the worst words I have ever heard in my life soon followed:

There is no cure, and they’ve predicted that she’s got days left.

They were not wrong.

We had heard that news on the Wednesday, and not even a week later, on the following Monday, my sister received that dreaded phone call from the hospital. She had gone.
It’s true what they say about that moment—time slows down. I remember just closing my eyes against it all and hanging my head, and like something from a film, the best memories of my mother flashed through my head. Her laugh, the way she held me when I fell as a kid, the silly faces she’d pull, her love for trilbies, and how she would always tell wonderful stories about all the characters she’d meet at the pub. All that had gone now.
My sister saw my mother after her passing. I couldn’t. My bones wouldn’t hold me up long enough to support me, plus those last words seemed like such a perfect way to say goodbye that I didn’t want to ruin my memory of her.
The days seemed so drawn out and quiet, like someone had turned off a radio, and all that was left was the chilling silence that follows. Even now, a year and a half later, that silence still haunts me: where there was laughter, silence. Where there were ludicrous stories, stillness. Where there was a never-ending amount of love, nothing.
On that day, I remember saying to my sister, “Well, now that I’m not scared that I’ll be woken up in the night with horrible news, maybe I’ll start sleeping again.” Wrong. I’m still not sleeping right.

After looking into it, we found that my mother had been having mobility issues since just after Christmas 2022. She was struggling to walk more than a few feet, which she put down to having a bad case of flu that had affected her bones. My sister and I only found out about this after her passing by seeing old Facebook posts that had been hidden from the pair of us. My brother had also told us that she had been experiencing really bad memory loss, which was put down to the effects of age, as she was in her late 50s by this point.
I also remembered a day she came to see me in Manchester in September 2022. She had told me she had booked it for a certain weekend, but I got a call from her one particular Saturday morning telling me that she was on her way to Manchester and asked if I could meet her at Victoria station.
When I questioned her about this, she told me that she had booked the tickets for this week by accident, but looking back now, I don’t think that was as accidental as she made out.
In her very last Christmas card to me (which I have still got), her writing wasn’t as neat as it had always been either, which I remember thinking was odd at the time.
Looking back now, it’s easy to see the small signs that would’ve gone unnoticed. But signs that definitely contributed to a larger picture.
I remember that last Christmas too. It was the first Christmas I had not spent with my, no ex-, partner of 6 years, and I spent the time with her—time I wouldn’t have gotten with her had my ex and I not split up when we did. For every silver lining, there is a cloud.

She passed on 20th February 2023, and we were struggling to find a suitable date for the funeral as the undertakers were exceptionally busy that time of year. Every date that was suggested fell on someone’s birthday, and in the end, we settled on March 15th, the day after my birthday, which filled me with a strange pride.
At first, I was dubious. I hate my birthday anyway, and something this horrific would only increase my hatred, but when I sat and thought about it, I thought that there is no better way of honouring someone than sharing your day with them.
I remember in the days before the funeral, being in Manchester and spending time with friends for my birthday, laughing and joking. I was still teetotal at this point, so my night consisted of knocking back the lemonades. Being surrounded by dear friends still isn’t enough to erase that sense of foreboding. That something dark and horrific is lying just beyond the horizon—and my mum’s funeral was that for me. As my friends and I laughed, I had that still small voice telling me that darkness is coming…

Monday rolled around, then Tuesday, and as often is the case, Wednesday was next. Wednesday was my actual birthday, and I had gone to Leeds to spend the time with my siblings and niblings. We made the day as okay as it could be. I was turning 32, and for the first time in my family, we had a birthday that my mum wasn’t there for—and that was an odd feeling! I hated the feeling, my sister hated the feeling, my brother hated the feeling, but none of us would admit it to each other; we just made the best of the day as best we could.

And finally, the day that we had all been dreading came:

Thursday. The day of the funeral.

Blue was the theme. My mother loved blue. Was blue mad. Couldn’t get enough of the stuff. Blue and trilbies (hence why my art brand is called Blue Trilby). So, everyone came dressed in shades of blue, and football tops, and trilbies, Stetsons, pork pie hats, and other variations of wide brims.
She would’ve loved this! In the crowd of people, a magnificent sea of blue, was one of my oldest friends, whom my mother adored. We hugged; I thanked her for coming, and not too far from her was a mutual friend of mine and my mother’s: a woman I had worked with whilst still in retail who my mother met down at the pub previously, and they had become fast friends. She wore a football top; it was red, which my mother would’ve hated (but secretly loved). I hugged her, and she held me so tightly. When I thanked her for coming, she told me that there is nowhere else in the world that she would rather be right now—showing support to me and my wonderful mum.

My mother wasn’t religious, so it was agreed that she would have a humanist funeral, and it was my job to find some photos of her and settle on 3 songs to play during the service. “Drift Away” by Uncle Kracker played as we all walked in. During the slideshow of pictures, “Dreams” (a song she loved to sing on karaoke) by Fleetwood Mac played, and as we all exited and said our final goodbyes, Luther Vandross’ “Dance with My Father” played, a rather fitting final song, as since her dad had died in 2008, that’s all she had wanted to do.
My brother was the first to speak at her service. He wrote her a poem. So strong for being only 16 years old. My uncle spoke, and the celebrant waffled on as they tend to do. All my cousins were crying, all my aunties were crying, all my uncles were crying. We all laid a rose on her coffin—my brother, my niece, nephew, sister, sister’s partner, and finally me—and then we left the room.
I remember my brother wailing inconsolably, being hugged so tightly by his father. Just one moment of close family—all the people that mattered most to her in the world—gathered. A lioness, once so proud and so fiercely protective of her cubs, had been laid to rest, as her cubs all gathered in one silent moment. Not a word was uttered between us, but enough was said in the silences.

Then chaos descended. People who she barely uttered a word to in the past 3 years appeared, but so did so many friends, family members, aunties, uncles, cousins. People that hadn’t seen me since I was a baby, people old enough to have been there when the very first flagstone of the chapel we were now in had been laid. Neighbours, colleagues, hell, even some of her ‘special’ man friends were there. She might have been taken from us after 57 years, but those 57 years had been incredibly full of love, friendship, and happiness.
Yes, she had lost, and she had yearned and ached, but seeing all these people just proved how well-revered she was. She was a force to be reckoned with, and no one knows that more than us.

The wake after was… I don’t even know. I don’t think I had it in me to be sad anymore on that day. I just remember that there were people and there was food. I had one plate of food and one diet Coke all day. I hugged so many people my arms were sore.
It finally came time for people to start filtering off. One by one we said goodbye to great-aunties, uncles, cousins, lovers, friends. Until it was just us again. The silence was even more deafening, but still, no more tears came that day. But the days, weeks, and months that followed were a different story…

After the dust had settled, and we started talking about the funeral, we both got so mad at a woman my mother was no longer friends with, who finagled her way to the second row while family and loved ones were seconded to the back rows or the overspill room.
A couple of days after the service, my sister returned to work. I tagged along with her for the day, and as we were sat in her little shop feeling incredibly raw and needing our mother the most, the funniest thing happened…
“Dreams” by Fleetwood Mac came on the radio. My sister and I both froze and stared at each other. My sister had told me that she had never even heard this song before the funeral—and now here it was again, during one of the darkest periods of our family’s history.

It wasn’t long after that I returned to Manchester, to try and live my normal life, whatever that was, but in those quiet moments—those moments when my life feels like it’s stagnating, or on a nighttime when the city is asleep—that’s when it hits me. That silence… that emptiness crushes me. It weighs a lot more than I can bear, and sometimes I get so low and sad that I don’t think I’ll ever be happy again.

In the time that’s passed, we have spoken to doctors about CJD, and we have since found out that the version my mother had was sporadic. There was a slight chance that it could’ve been genetic, but after speaking to a doctor in Edinburgh over the phone, he had ruled out the possibility of it being genetic completely. In a weird way, I was hoping it was genetic, as it gives the whole situation a reason; that this was always inevitable. But finding out it was sporadic was a double-edged sword—it means I and my family are at no higher risk of this disease than anyone else, which is good, but it also means that my mother dying was for naught, which is definitely bad.

Even now, the silence still hits me, and I am filled with so many emotions: I am angry that she was taken away from me. I am angry that when I have had life-altering experiences she has not been there to talk to about it. I lost my job, and she wasn’t there. I gained and lost friends, and she wasn’t there. I started a new job, and she wasn’t there.

I am angry, and I am sad… not just sad but traumatised, and I don’t know how to cope with these feelings. I have talked to professionals, and still, I am angry.

I am angry for the potential that has now been lost and that my brother will experience milestones that she won’t be there for. And perhaps most of all, I am angry that other people are happy, and their lives have gone on as normal.

I am also scared. Scared that one day it’ll be five years, then ten, then 30 since she has passed. I am scared of living more of my life without her than with. I am scared that I will have to go through all of this again one day, as no one knows when sporadic CJD will strike… I am scared that I will begin to forget her.

But when all is said and done, all I, and anyone else, can do is live in the moment. Live for those we’ve loved and lost. Live for those who are still here, and most importantly, live for ourselves.