This week we share two stories from people whose understanding of the use of memory was challenged.
Part 1: Padraic Stanley gets a fresh start when his abusive father gets diagnosed with Alzheimer's dementia.
Padraic Stanley is a social worker living in Chicago, IL. He currently works as a program coordinator for health promotion programs in the Rush University Medical Center Department of Social Work & Community Health. He is also the chair of Rush’s Immigrant Health Working Group, which oversees Rush’s immigrant health and welcoming healthcare initiatives. Up until recently, Padraic was also a registry inpatient case manager at Mercy Hospital and Medical Center on the weekends. He is a graduate of the Loyola University Chicago School of Social Work, where he completed the Albert Schweitzer Fellowship and completed a clinical practicum at Heartland Human Care Services and the Illinois Coalition for Immigrant and Refugee Rights. Currently, he is on the associate board for Erie Neighborhood House, a member of the National Schweitzer Fellowship Alumni Leadership Committee, and is on the executive board of the International Association of Social Work with Groups.
Part 2: After meeting a man with a rare memory disorder, Paul Aflalo reconsiders his own memories.
Paul Aflalo is a storyteller and documentary producer. He creates narrative-driven pieces for film, radio and podcasts. His work has been featured on CBC Radio, SiriusXM, and presented at film festivals around the world, including the International Documentary Film Festival Amsterdam. Paul has shared stories across Canada, in Europe and the UK. Paul is the Artistic Director of Replay Storytelling, an all-true storytelling show in Canada, and is also the Creative Director of the Aphantasia Network. In 2020 in response to the global pandemic, he founded the world’s first 24-hour True Storytelling Festival, bringing people together from all corners of the globe, to share personal true stories from lived experience. His focus is to help others share the stories that need to be told.
Episode Transcript
Part 1: Padraic Stanley
My dad was diagnosed with Alzheimer's dementia at the age of 65 and my older sister and I didn't want anything to do with that. We were not interested in taking care of him and we were just not really up for that.
You see, my dad was not exactly the nicest person before his diagnosis and he was verbally abusive also physically abusive. And when I say verbally abusive, it's those deep-cutting, abusive things for when my sister was getting ready to apply for college. He said that the two of us thinking about going to college would have been a waste of everyone's time and money because we were so damn stupid.
So his diagnosis came around because my mom noticed that things were a little more off than usual. We were not exactly keen on taking care of him but we are an Irish Catholic family and that carries a lot of guilt, you know that Irish Catholic guilt, because who else is going to do it? No one else is going to do it. And also there was my mom.
Padraic Stanley shares his story with the Story Collider audience at the Cards Against Humanity theater in Chicago, IL in December 2019. Photo by 8es Babies.
My mom is a light in this world. She's the foil of my dad. She is so kind and patient and understanding and present and I couldn't let my mom do this alone. She had one foot out the door when my dad was diagnosed and she felt obligated that she had to stay with him through it, and so we all felt obligated to stay.
I've kind of taken on this role of caregiving. Let’s fast-forward to five years later when my dad's dementia has progressed significantly as it does with all people with dementia. I've taken the day off because the home health care company called in the morning and said that our regular home health nurse was not coming in and they would not be sending a replacement because they were just short-staffed or whatever it was.
But this happened very frequently and it left our family scrambling last minute to find out who was going to cover, because there was no way that my dad could be left at home alone anymore since his dementia had progressed. He basically would, especially after he started to heat up leftovers on the stove, that he put an electric tea kettle on the stove. It was weird because this man who literally never cooked or wanted to be inside of a kitchen was all of a sudden fascinated with the stove. So, go figure.
It's this day that I've taken off because we basically pulled short straws of like who's going to take the day off and take care of dad. I get the short straw so I call off.
I had just finished making lunch and I'm in the kitchen. I'm washing the dishes after lunch and my dad comes in and asks for a glass of water. We lived in one of these homes that it took forever for the water to turn from cold to hot and hot to cold, so I'm washing the dishes with hot water and so I say, “Oh, the water's really hot right now, dad. Just give me a minute and as soon as I'm done I'm going to give you a glass of water.” He says okay and he walks into the living room.
Then I finish up the dishes, I make him a glass of water and I walk out to the living room and he is not there.
Okay. So where is he? I look upstairs in the bedroom. I look in the downstairs bedroom. Not there, not there. Dining room, not there. I go out to the backyard, not there. And I'm starting to panic. I'm starting to feel like, “Oh, my gosh. Where is this man? Where is he?”
Like I'm hyperventilating because I'm remembering two months before this moment, my dad had, when we were not keeping an eye on him, had gotten into an unlocked car and we lived on a hill. The car had rolled down the hill in neutral and had hit a couple of other cars down the way.
So I'm freaking out on where my dad could be and he's not outside. So I walk back in and I'm preparing to call my mom because I have no idea like where this man could be, because people with dementia move so quickly.
But then as I'm coming back into the house, I'm taking a deep breath, I hear some crashing in the bathroom. So I'm like, “Oh, God, I would rather the car.”
So I run to the bathroom and I'm just so incredibly mad. I'm mad at myself because I'm like how could I have let him out of my sight. You're so stupid. You're so ridiculous. But then I'm also mad at him. I'm mad at everything, like this is not fair. Why is my life revolving around this awful person, this man? Like why? It's not fair that my family has to put up with this and I'm so incredibly mad.
I open the door to the bathroom and there's my dad. The first thing I look down as I see his little feet and he is drinking from the toilet on his knees. I feel a lot of pity and shock because it's so cruel and unusual and you would have never thought that this was it, but my reaction that comes out of me is just pure anger.
It's just, “What the hell, dad? Jesus Christ! I said I was going to be just a minute,” but it was too late. Like I said, people with dementia move awfully quick and that was really my moment caregiving five years after my dad's diagnosis that I realized that my life was just not going to be the same anymore and I just had to accept it.
Padraic Stanley shares his story with the Story Collider audience at the Cards Against Humanity theater in Chicago, IL in December 2019. Photo by 8es Babies.
As a processor, I tried to find ways of how am I going to accept this. How am I going to make peace with this? I realized that my dad, who used to be this awful, angry person, had kind of been tranquilized. The disease had kind of mellowed him out. It had made him quiet and it was kind of nice that this has happened.
He, of course, would get agitated, as a lot of people living with dementia do, but we could calm him down really quickly by playing Jimmy Buffett, like, “Dadadada, Margaritaville, and the fins to the left, fins to the right.” We would play that and he would just be totally chill.
Also, I realized that his memory meant that I could mess with him. So my friends would come over and keep me company while I was taking care of my dad and I remember sometimes they would say, “Is your dad okay with you being gay?”
And I said, “I don't know. Let's find out.”
“Hey, Dad. I'm gay. I like men.” And he would just be like, “Uh, whatever.” Then five minutes later he would forget about it and I would say, “Nah, I think he'll come around.”
So I've kind of made terms with this and this is kind of how I'm dealing with it and it's kind of how my family is dealing with it. We're finding silver linings and the positive aspects of what we can get out of this because if we're not laughing we're going to be crying and going crazy.
So 10 years later, my dad passes away, finally passes away. And I say, finally, because 15 years is a cruelly long time for someone to live with Alzheimer's disease. Most people who receive this diagnosis die much earlier from complications: falls, strokes, heart attacks. But, unfortunately, my dad was healthy, except for the dementia.
So he lived for 15 long years until he passed away in a nursing home in rural Ohio surrounded by all of us. It was in this rural Ohio town that I just could not wait to get out of. My dad, at the time after 15 years of living with dementia, was 80 years old and I was 25 at the time. So if you can do the math, I was 10 years old when we received my dad's diagnosis.
So I grew up caring for my dad. And that moment with the with the toilet happened to 15‑year‑old Padraic. This is always really hard, but something that—so, people can often say that my caregiving story is so unique because of the age that I was at when I received this diagnosis and how do you come to terms with taking care of someone that was so awful to you and how can we figure out, like the dad-sitting, we called it dad-sitting to figure out who was going to be there.
But, ultimately, people say, “Your caregiving experience is so unique,” and I say, “No, it's not unique.”
Every single caregiving experience is different. Every single family dynamic that happens when a person is diagnosed with a chronic illness, especially Alzheimer's or Alzheimer's dementia is different. So I want to say in that aspect my caregiving story is just like everyone else's. There's absolutely no specific way that a caregiver looks like because this is what a caregiver looks like. Thank you.
Part 2: Paul Aflalo
It’s 2015 and I'm working on this promo video with a bunch of students from Laurier University in Waterloo. We're on our last day of filming. It's been a long shoot but it's been going really, really well.
For this particular last scene that we needed to build the film for this promo video, the lead of this project Tom has to deliver some very key lines looking straight to the camera. Now, I've worked with so many actors and performers before so when I say Tom was struggling to memorize his lines, boy, he was struggling.
Now, Tom's not an actor so I don't really hold it against him but it was becoming really, really painful the sun was also setting and we were losing light so we needed to get this done a little bit faster than normal. So we took a bit of a break. I sat down and started breaking the script down for him to make it a bit easier while he was talking to his friend Chaz about an interview he did on the radio.
Now, I was eavesdropping on their conversation and jumped in and I said, “Oh, is it about this project that we’re filming the promo video for?”
And Tom looks at me and goes, “No, not really. It's actually about my condition, I guess.”
And I'm like, “What about your condition?”
And he tells me, he goes, “Listen. Close your eyes and picture a horse.” And if you want to do that right now, go for it. So I close my eyes and I picture a horse.
Paul Aflalo shares his story with the Story Collider audience at the Burdock Brewery in Toronto, ON in October 2019. Photo by Stacey McDonald.
Then he tells me, he goes, “Listen. To your horse, think about where it is. Think of the smells in the air. Think about everything around it. And when you're ready open your eyes and tell me what you saw.”
So I open my eyes and I tell him. I see a black horse behind an old wooden fence made of branches. There's a barn that's red with a gray roof. Off in the distance there's hills. It's the morning. It's misty. It smells like the fall, a very nice, cool fall morning.
And he looks at me and says, “I can't do that.”
I'm like, “What do you mean you can't do that?”
And Tom says, “I can't do that. I don't have that visual system. I can't picture things in my mind, not for thoughts, not for memories, for nothing. I can’t bring back any of the senses from previous memories.”
Tom lives with aphantasia. It was only coined earlier that year in 2015. In fact, Tom was one of the people who reached out to a professor out in the UK when he read an article about a patient this professor had encountered. So Tom was part of the founding of this name. He's been this way his entire life.
And it goes deeper than just the visual. It's all the senses. So when you think about your favorite song, you could probably hear it in your head. He can't do that. When you think about what you had for dinner last night, he can remember logically what he had for dinner but he's not bringing back any of the flavors in his mouth. He's not remembering what that specific meal looked like.
Think of like a pepperoni pizza, for instance. You know it's round with the small pieces, and you could probably see it in your mind. None of that.
But he even goes one step further. When Tom was 17, his mom passed away unexpectedly. He was just deeply depressed for 6 to 8 months and it was all-consuming. But when it was over, it was over. He can never go back and relive past experiences. It's impossible for him to do that.
He'll remember them logically. He's not unemotional as a robot, just so we're clear. He remembers these things very logically but he doesn't bring back any of the emotions from those memories. Nor happy, nor sad.
I researched aphantasia for four years. I'm still even researching it more and more. It was my thesis project when I was at Ryerson University. It's been produced into a radio documentary and I'm still learning so much.
And the one thing that really stuck with me when I was researching all of this and knowing Tom and interviewing him and discovering things with him was the emotional aspect of it. The fact that he couldn't relive past experiences blew me away.
It's 1987 and 6-year-old Paul is in Orlando, Florida with his siblings, my older sister Marnie and my brother Mark and my younger sister Jessica. We're traveling with my grandmother, because my grandfather is back at home and my parents were also back at home still working. It's April. It's the Jewish holiday of Passover so we have the entire week off from school so here we are visiting our cousins in Orlando, Florida.
This house is a house I've seen many, many, many times and I know it. When I close my eyes it's there. I was six at the time and I was playing Legos with my cousin Jonathan. He was four and we were in his massive huge bedroom with like a shag carpeting, so our tower that we were building out of the blue and red Lego blocks was not very stable.
On the wall in Jonathan's room is this massive wallpaper photo of a jumbo jet, a giant passenger jet that just fills up the entire wall which is like 16 feet wide and another 19 feet high. It's a massive room. He actually has the master bedroom. I don't know why but he just does. I don't know why a 4-year-old gets that but he does. And all he has besides that are his toys scattered around this massive room and bunk beds where I usually sleep when I go visit him. He'd always get the top bunk because I'm just larger than him.
There's a connecting bathroom that also connects into his sister's room. And that shag carpeting that we're building this tower on fills up the entire house.
My grandmother at one point while we're deep in concentration building this massive tower calls me downstairs and I'm just like, “No, I don't want to go downstairs. I want to continue building this tower,” so I ignore her like a good responsible 6-year-old.
A few minutes later she calls me again from downstairs and goes, “Paulie, come downstairs. I need to speak to you."
So I take a big sigh, I get up and I start walking and plopping myself down the stairs, the same shag carpeting on each step. Then when you turn back around, it's like the stairs that go down then flip around and there's the kitchen. And sitting at the kitchen table, which is pretty small, is my older sister Marnie, my younger sister Jessica and my brother Mark.
Paul Aflalo shares his story with the Story Collider audience at the Burdock Brewery in Toronto, ON in October 2019. Photo by Stacey McDonald.
My grandmother who always just wore long skirts had bright red hair that clearly wasn't natural and always wore different blouses - this one was very Florida-like with palm trees everywhere - was leaning against the kitchen sink.
I took the only seat that was left which was right across from my sister Marnie. My little sister Jessica was sitting right next to me. My grandmother took a big deep breath and walked to the table and she said, "I have some bad news for you.” And then says, “Your father has died.”
I don't remember a lot of what my grandmother said next because I was just taking in that bit of information and I didn't really quite understood what that meant. I didn't really experience death until that point. I just remember my older sister Marnie crying in front of me, which then prompted me to cry.
My brother was sitting there just kind of emotionless and not really saying anything and my younger sister Jessica was just asking questions as she was crying.
At one point, I just couldn't take it and I just burst into tears. I just got away from the table, popped off the chair and ran upstairs to my cousin's room and jumped into bed, and I cried myself to sleep.
These memories are memories I hold so dear. When I'm telling you these stories, and this story in particular, I remember plopping off the chair. I was a tiny 6-year-old kid. I know. Shocking when you see me now.
Running back up the stairs I can see every aspect of that house. The shag carpets, the stairs, that aren't full stairs. You can see through them as you go up. And then running into my cousin's room, again with that giant photo of a plane, the ceiling fan, his bunk beds which were like a very, very dark brown. The feeling that I'm feeling I'm kind of feeling it now, with less intensity, of course, but it's still there.
And when I think about it, and I think about it really, really hard, people like Tom, people who live with aphantasia sometimes really envious. Thank you.