This week we present stories about two people who had to navigate the complicated process of helping their family when they were needed most.
Part 1: When his mother is diagnosed with breast cancer, Ian Anthony has to take care of her, even though she didn't always do the best job of taking care of him.
Ian Anthony works as a public defender in Howard county, Maryland where he represents indigent defendants. With a background in theater and a passion for storytelling, he fights to make sure the truth of his clients’ stories gets told. Ian is a proud graduate of Columbia University (B.A.), Maryland Carey Law (J.D.), and the Trial Lawyer's College.
Part 2: Determined to make it on her own, Yaihara Fortis Santiago leaves her home in Puerto Rico for grad school, but her father still wants to protect her.
Yaihara Fortis Santiago grew up in the mountains of Puerto Rico where she felt in love with science. After completing her bachelors in Biology at the University of Puerto Rico, she moved to New England to pursue her PhD in Neuroscience at Brandeis University. Her time at Brandeis made her realized that she wanted to use her science training to have an impact on Higher Education. In 2012, as part of her AAAS Science and Technology Policy Fellowship, she worked at the Nationals Science Foundation (NSF). Her work at the NSF gave her the foundation to launch a career training scientists at the intersection of policy, communication, diversity, inclusion and equity. Currently, she is the Associate Director for Postdoctoral Affairs and Trainee Diversity Initiatives at Memorial Sloan Kettering Cancer Center. Furthermore, in 2020 she was selected as a fellow for the Women inPower network. She loves big city living, but she is the happiest at her family’s farm, traveling with friends, telling stories and dancing salsa.
Episode Transcript
Part 1: Ian Anthony
So I've always been afraid of the dark. Always. It just seems to be part of the recipe of me. It’s one part blonde, two parts bowlegged, three parts anxiety.
When I was younger, I had to come up with the routine in order to help myself feel safe going to sleep. The first thing I had to do is stand outside my door and close it all the way so that I could make sure that nobody or nothing snuck in while I was getting ready for bed.
So I would back up as if I had just left a meeting with the queen, go to the bathroom, brush my teeth, all the while poking my head out of the door to make sure that I could see that the door to my bedroom was safely still closed where I'd left it. It was a way to sterilize the space, I guess. Keep out unwanted visitors.
Ian Anthony shares his story with the Story Collider audience at Bier Baron Tavern in Washington DC in December 2019. Photo by Lisa Helfert.
When I was ready for bed, I would slam the door open as hard as I could. That was important. It had to hit the wall so that I knew no one was hiding back there. From there, doors were opened, cupboards were cleaned out, made sure that everything was empty and that nobody was hiding. And only then was it safe for me to go to sleep.
Sometimes, though, that wasn’t enough. When I was feeling really scared, when that routine didn’t make me feel relaxed, I needed to call on the reinforcements, my mom.
My mom and I are a lot alike. I got a lot from her. And she just sort of knew what I needed. So without even saying anything, I would sort of yell down the hall. She would come on in and she would know right away whether to rub my back or chop my legs or something to distract me from how scared I felt.
And once I fell asleep, she would sneak out. She would leave the door open just enough so that a sliver of light would pierce through the darkness and I would be okay.
I remember one night I woke up from a particularly scary nightmare and the sliver of light that she left for me wasn’t enough so I needed to go get her. I mustered the strength. I leapt out of bed and I looked down the hall.
The hall was gray and at the end of the hall I could see my parents’ bedroom. They slept with the door open for nights like this and it was magenta. So it stood out. It was like a beacon of awful‑colored hope at the end of the hallway.
I would take a deep breath and I would crouch down low so that my head didn’t poke up above the railing where anything that was hiding could see me, and I would run into my parents’ room. But I wouldn’t wake my dad. I knew better than to do that. I would just go for my mom.
I went round the corner of the bed that night and I looked expecting to see her there and the usual way when she was half asleep, throw over the cover of the blanket, I would crawl in and go to sleep next to her. But as I rounded the bed this time, her side of the bed was empty. It was just a rumpled mass of sheets.
I hadn’t expected that and so my young brain couldn’t really make sense of it. I just remember feeling the fear that I felt in my room was so much less than the fear I was feeling now. Where was she? Why wasn’t she here? And I just got really disoriented and confused. I knew that this space didn’t feel safe anymore. I needed to go back to the room that I had made sure was safe.
So I left the bedroom and the magenta turned to gray. As I’m running down the hallway as quietly as I can, I heard a sound that I'd never heard before. It stopped me in my tracks right at the top of the staircase.
I peeked. I looked over and at the bottom of the stairs I saw a shadowy grunting mass of limbs and hair that was just sort of climbing up the stairs in this really bizarre manner. I was like, “Okay. Well, I’m vindicated. This house is fucking haunted.”
But our brains are wired to look for patterns, so I rubbed my eyes and I looked and, slowly, my eyes started to adjust to the light. The massive hair actually turned out to be blonde. And the limbs that were flailing all around, well there were just four of them, two arms, two legs. My brain started to tell me that the grunts were whimpers and that this thing was actually my mom.
But I didn’t recognize her. I didn’t recognize what she looked like, I didn’t recognize the way she was moving and I didn’t recognize the sounds that were coming out of her. So I was scared. My instinct was to scream for my dad because I thought, “Okay, well, now, I can wake him up.”
But before I could do that, she actually stumbled, fell into the wall and woke him up herself. So I freaked the fuck out and I scattered back to my room, closed the door behind me and just marinated.
I didn’t know that what I had seen that night, secretly, was my mom trying to climb back to bed after binge drinking in secret in the kitchen. I was too young to understand what alcoholism was and substance abuse. And I certainly didn’t understand that the monsters that she was fighting were much worse that mine. Mine stayed hidden in the closet when I went to college but hers they just kept grinding after her, and winning. First, they took her job and then her license, took her marriage and, eventually, me, in a way.
I'd always tried to be there for her over the years, to do anything I could think of, when I was younger, with something as simple as replacing the gin with vinegar. She really hated that. Or dumping out the liquor.
We drove her to AA meetings, me and my sister, just to make sure that she’d go. We did way too much. And you can only take a horse to water. She wasn’t thirsty enough to drink yet. I had to pull away so that I could protect myself.
By the time I got to college, I think she visited me one time. I don't know why I said ‘I think’. I’m absolutely sure. She visited me one time. And our relationship was more or less over the phone and then holidays.
When she called me one night after I was leaving a rehearsal, I almost didn’t pick up because I didn’t know which mom I was going to get. There was mom and then there was mom. I didn’t know if I felt like dealing with it, but I picked it up.
She said, “I have breast cancer.”
Breast cancer is bad enough, but it turns out all the years of drinking had been at the expense of regular mammograms and doctors’ appointments, so by the time they found hers, it was pretty advanced. It had made its home in her liver, which was already riddled with cirrhosis so I knew she didn’t have much longer.
And I knew that I needed to get home to be with her. Because despite everything we’d been through, despite all of the distance that had been drawn between is in this rift that existed, I knew that none of that mattered. I mean it mattered but I could work through that shit on my own. She had a bigger fight ahead of her and she needed me there with her to help. Or at least I wanted to be there even if she didn’t need me to be. My sister too.
So we picked up. I put my life in New York on indefinite hold and moved back to Baltimore just to be near her, to enjoy whatever time we had left. Bring her food if she needed it, just stop by and say, hey, maybe watch her favorite shitty Syfy movie, Sharknado, which is terrible. But she loved it so we watched it, and as many sequels as she could get us to watch.
We just wanted to enjoy the time that we had with her. It was like time was in broad brush strokes at that point. As the years became months and the months became weeks, she finally sat us down one day and she said, “I’m scared.”
I mean, by this time treatment goals had changed. The illness had progressed and she had finally, I think, started to let in the reality of what was going on. “I’m scared. What if I don’t make it?”
My sister and I we were in hospital with her at that time. We were on either side of her and we said, “Well, we’re scared too. And we’re here. We’re together and we’re not going to leave.”
Ian Anthony shares his story with the Story Collider audience at Bier Baron Tavern in Washington DC in December 2019. Photo by Lisa Helfert.
And she sort of turned her palms up. We put our hands on either side in hers and we said, “We promise. We will not leave.” She relaxed and she smiled and she was able to get some sleep.
My sister and I took that promise really seriously. We did not leave - my husband can attest to this - that hospital room for over two weeks. By the time we were down to hours to minutes, we had moved her to hospice care.
She hadn’t eaten in a while. She hadn’t had anything to drink. And so she couldn’t really appreciate the hospice environment, which was really beautiful. Heartbreaking but beautiful, because it was so gentle and peaceful and just surrounded by love and comfort. Not only for the people who were finishing their journey but also for the family they were leaving behind.
And the nurses, they helped you understand. They helped you understand that at this point, death becomes a biological sequence of events. I guess that’s what scientists already know but, for me, death, until that point, had always been something that I had found out about after the fact. My Uncle Howard died. Aunt Rebecca was dead. But I was actively watching my mom die and I didn’t know what that was.
So the nurses, they really help you through that. They come through and they check, because there are stages as your body starts to shut down. There are stages that you go through.
By this time, like I said, we were at the hours to minutes. Her hands and feet had already gotten cold. She had already gotten confused. She stopped eating and drinking and she was just sleeping all the time. And we had started to hear what’s called the ‘death rattle’, which is horrible. She can’t swallow at this point so there's a buildup of mucus, so when she breathes it sounds like this really eerie rattlesnake just crawling up the bed toward her.
And the nurse came in and she said, “We were expecting,” you know, so she takes a little dropper and she puts it down my mom’s throat. My mom couldn’t swallow, but just being in there would help break up the mucus so that my mom could breathe quietly. So at least even though my mom didn’t know what was going on, my sister and I wouldn’t have to hear this slow, encroaching rattle of death.
And it helped, but my mom still didn’t let go.
The nurses, they pulled us aside and they said, “We don’t know what she's waiting for, but we think she's waiting for something.”
I didn’t understand what that meant. I didn’t understand how someone who hadn’t spoken in days, who hadn’t in eaten in almost a week and hadn’t had anything to drink in probably longer could make any decisions. I thought she was just sort of there and it was more for us than for her.
But the nurse said, “No. I've been doing this a long time and I can tell you that people choose when to die.” She said, “I don't understand it. I don't know anything about it, and I’m not trying to push anything on you, but I’m just telling you what I observe is that people, who even seem like they're moments away from saying goodbye, will wait days for someone to fly in from overseas or for the rabbi to arrive.”
And so she said, “I don't know what your mom is waiting for, but if you know and you can help her get there, you should.”
My husband was coming in and out, my sister’s husband was coming in and out, family was coming, people I hadn’t even met were just coming to sort of pay homage to my mother’s body laying in the bed while she slowly wasted away. It was a very bizarre experience. But my sister and I were like, “I don't know. Who else could come? Who is she waiting for? What is she waiting for?”
And I realized that, you know what? I don't think she's waiting for anybody. Looking back and just sort of knowing what my mom was all about, it wasn’t that she was waiting for anyone to arrive. I think she was waiting for people to leave. She lived alone for so long. She loved her solitude. She loved her quiet. She loved her music. She loved us.
So I ushered out the family. I sent our husbands to go pick us up dinner and I asked the nurse to just step out. I closed the door behind the nurse. My way of sterilizing the space, I guess, keeping out the unwanted guests.
And my sister and I just took our place at my mom’s side, my sister on the left and me on the right. We just put our hands in hers, rested our heads on her chest and she let go.
I realized that despite everything that we've been through, all the shit, all the ugliness, all that mattered was that. That in her final moments, that’s how important we were to her that she chose to wait until it was just us to finish her journey. That was the most amazing gift that she ever gave me. Thank you.
Part 2: Yaihara Fortis Santiago
It’s the summer of 2005 and I just finished undergrad. I go to my parents and I announce very determined, I’m going to grad school in two weeks in Boston.
They're shocked. They're shocked because I haven't shared my journey through undergrad and they kind of didn’t have any idea what was next for me. They were assuming that I was going to stay back home, close to home like my siblings, but I had other plans.
I’m the youngest of four siblings, four very strong siblings. Opinionated, strong-willed, stubborn. So very early on, I decided that I wanted to be independent. I was so convinced that I wanted to be independent that I entered college at 16 and my first task was to find a way to fund my studies.
So I applied for an NIH program to do research as an undergrad. I was very lucky to be selected. The program paid for my tuition as well as a stipend for me to have a full ride for undergrad while doing research in a lab.
So my parents were kind of like off the hook and I was very proud of myself for being able to secure the money and allowed them not to worry too much about me. They have three other kids to worry about.
It came the time for me to go to grad school. Going back to that announcement, they prepared. They had two weeks to prepare to take me to the airport.
Yaihara Fortis Santiago shares her story with the Story Collider audience at Hawaiian Brian’s in Honolulu, HI in November 2019 as part of a show with SACNAS. Photo by Lisa Helfert.
So they drove me to the airport. We spent an hour-and-a-half in the car. The atmosphere in the car is very heavy because they are sending their youngest off to the mainland to do grad school, something that they had no idea what it is.
When we arrived to the airport, my father gets out of the car. He comes around to help me with the luggage and he's kissing me goodbyes and getting very emotional to send me off, he pulls off a stack of cash and tried to hand it to me.
I’m like, “Hell, no.” I was like, “No, I don't need the money.” And we engaged in a fight right there at the airport in San Juan.
But at the moment, everything stopped for me and I said to myself with my internal strong voice, “You're going off to Boston. Stop.”
So I took the money and as I slowly see him going around the car to get into the driver seat, I go running into the passenger seat. I knocked on the window and I gave the money to my mom. She looks at me and she said, “What is this?”
And I said, “I don't know, but you could figure it out with Dad on your way back home.”
I grabbed luggage and I ran right into the airport, avoiding that my father will realize that I declined the money.
This became our ritual every time he drove me to the airport for the next six years. He always wanted to be there for me and I always wanted to reject him because I felt very strong to support myself.
My parents are great supportive parents. So they came to visit me in my third year in grad school during Thanksgiving in Boston. They came and brought my aunt along. So the next morning, my aunt and my father get into the rental car and just left me and my mother behind. I had no idea where they're going so I said I’m going to have a good time with my mom and forget about the two of them.
So when they came back, it’s like 3:00 p.m. And they walked in with a stack of brochures. I’m like, “Strange. Whatever.”
So my father, who is very strong, very strong, calls me in, and when he calls you in you listen. He's like, “Come over here.”
And I’m like, “Yeah.”
He's like, “So,” he displayed all these brochures in my living room table and he said, “which car would work better for you?”
I look at him and I’m like, “How dare you?” I was livid. I didn’t want a car in Boston. And I told him. It’s like, “I don't want a car. I don't want to pay for the car. I don’t want to pay for the insurance on a car and I don't want to shovel snow. So, hell, no. I’m not taking this car.”
So we went back and forth. We fought each other. I get angry at him, he gets angry with me and then we’re loving each other in the next moment. And we spent the rest of the weekend fighting about this car that I’m not going to take and that he wants to give me.
Yaihara Fortis Santiago shares her story with the Story Collider audience at Hawaiian Brian’s in Honolulu, HI in November 2019 as part of a show with SACNAS. Photo by Lisa Helfert.
But we also spent the weekend enjoying other little moments. Smoking the same cigarette, my mom wasn’t happy about that. Or talking about life, of singing along some of the Trio songs that we used to sing back in Puerto Rico.
My father is a type of person that he walks into a room and you feel him. You don’t have to know him to know he's there.
In my hometown, he's very well-known. People love him. People admire him. People respect him. People listen to him. And people look at him with admiration and love. I grew up with him walking out and everybody calling his name.
But the one thing about him is that he's there for me. He's there for my family, he's there for my siblings, and they were there along as I was building my identity in Boston. And that’s the thing. Here I am doing grad school in Boston trying to build this scientific identity, trying to build a name for myself, struggling through grad school, pushing through grad school, but becoming my own person. But the second that I land in Puerto Rico, I’m just my father’s daughter.
And here are my parents watching from the distance as I become this person, as I go in life finding my solo identity. They were in the front row for my thesis dissertation. They were there when my PI hooded me during graduation. They were also there when I pursued a different career track and landed a fellowship in the federal government at the National Science Foundation. They came to visit me. They were proud when I was able to land my first job that I navigated on my own in New York City. All the time they were there supporting me.
So then as my career is progressing and I’m coping with the fact that I have built a name for myself, and I am enjoying my first job in New York, an amazing speaking engagement opportunity came along and I’m presenting at the United Nations.
I’m thinking to myself, “Holy shit, I made it! My parents are going to be so proud of me.”
So I asked one of the people in the audience to take a picture because I wanted to send it to my family so that they could be so proud of me. I get the picture, I did my speaking engagement, and I’m in a high. I’m very, very high. I’m excited, I’m proud, I’m like: “Oh, my God, my parents are going to be so amazed by what’s happening,” so I sent a picture to my mother. And I hear nothing for hours.
I’m like, “That’s strange but, hey, such is life.”
A couple of hours later, I get a text from my mother saying that my father wasn’t doing well. And I’m thinking, “Well, you know, it’s mom. She's so exaggerated. She's probably wanting my attention.”
But I called her and she briefed me and she said that he's not doing well. They're going to take him to the hospital. And my stomach sank. In my 30-plus years of age, I've never seen my father sick. So I’m thinking this is serious and for the rest of the day, I just had that feeling in my chest that something was just not right.
So at midnight, I decided to call my mom. When she picked up the phone she sounded very different. Her voice was fragile. She was pausing. And she told me that my dad wasn’t doing too well.
So the scientist in me told her, “Put him over the phone. I’m going to talk to him.”
There is a pause and I hear my father mumble my name under his breath. That was the last time I heard his voice. My father passed away the next morning at the same time that my airplane landed in Puerto Rico.
And the world as I know it collapsed. Everything that I have worked so hard for, this identity that I had built, that I was proud of was broken into pieces. And my family was shrouded in sorrow and pain. Every roadmap, every plan, every aspiration that I had just made no sense at that time. Everything lost its meaning and I felt lost for the first time.
And in the days after his death, at his funeral, we got thousands of people to come see him. In that room, people shared stories of love, of service. They told us how he helped them build houses, buy cars, send kids to college.
And people would come to me and try to console me and they will hold my arms and tell me, “You don’t understand the pain that I’m going through.” To be honest, I didn’t understand their pain. I didn’t understand my own pain.
So those stories of love, of admiration, the stories of his grit, his humanity, his charisma, his love for his people, those stories saved me. And those stories gave me a way back to find my identity.
And it was there navigating all the paperwork and all the things that happened after his death that my scientific identity kicked in and I started to compartmentalize everything into boxes so that I was able to function and get things done.
It took me months. It has taken me years to mourn, to heal, to suffer him, to miss him. I am his split image. People tell me I look like him, I act like him. And I have learned now that he's gone that I have worked so hard to build this identity as a scientist and as a professional. I have learned that I’m going to continue building that identity as I move through my career. I have also learned that as I navigate adulthood, and I still have no car, the one thing that I’m always going to wear as a badge of honor is to forever be my father’s daughter.