This week we present two stories from people who lost loved ones and had to rebuild themselves.

Part 1: Massih Moayedi survives cancer, but the recovery throws his life off track.

Neuroscientist Massih Moayedi studies pain, a job that raises eyebrows at parties and sometimes prompts the confused response: "What kind of paint?" His research actually focuses on understanding how pain is processed in healthy individuals, and where the differences lie for those with chronic pain. He is now an assistant professor at the University of Toronto's Faculty of Dentistry, and Co-Director of the Centre for Multimodal Sensorimotor and Pain Research, but his path to pain research was a personal one.

Part 2: After his 20-year-old daughter dies suddenly, Paul Battista has to relearn what his role in life is.

Paul Battista holds Bachelor and Masters degrees from the University of Waterloo and leads the financial services practice for EY Canada. In the wake of the tragic loss of his daughter in 2017 as a result of a flawed diagnostic protocol, he founded the Leah Battista Foundation (leahbattista.org) dedicated to carrying out work that was destined to become Leah’s life legacy had she lived. To that end, her Foundation is dedicated to improving, enriching and empowering the lives of youth and the disadvantaged through health and education, the arts and social entrepreneurship. To learn more about Leah’s kind and generous spirit and to consider supporting the Foundation that has been created in order to continue to help carry on her work, please visit leahbattista.org and follow the Foundation on Instagram at https://www.instagram.com/leahbattistafoundation/ and on Facebook at https://www.facebook.com/leahbattistafoundation

Episode Transcript

Part 1: Massih Moayedi

So I'm 20 years old and I'm sitting in my rented room in Ottawa where I go to school and the phone rings. I find out I have cancer. The weird thing is the person telling I have cancer is my Dad.

And it all started a few months earlier on New Year’s Eve where I'm back home. I'm getting my wisdom teeth pulled out and everything goes well. I go back to school and then we get called back for more tests. No explanations, just more tests.

So I find myself at the Faculty of Dentistry at the University of Toronto and I'm surrounded by a gaggle of residents asking me really specific questions about symptoms, but not giving me anything else.

I go back to school and now we’re back to that phone call where my dad calls me and says that they want an MRI.

And he asked them, “Well, why do you want an MRI? Those aren't easy to come by. This must be serious.” And they say, “Well, we can't tell you.”

He said, “You absolutely will tell me. This is my son.”

So he tells me, he was like, “Massieh, you have cancer.”

And I throw the phone against the wall and crumble to a heap and cry, eventually gather myself up and get the courage to call him back.

He tells me I have something called mucoepidermoid carcinoma. I Googled that every day for weeks. I learned that it’s a rare form of cancer that affects 1 in 6 million people, but because it’s so rare, there isn’t much out there.

Massih Moayedi shares his story with the Story Collider audience at the Gladstone Hotel in Toronto, ON in January 2020. Photo by Ben Ma.

So I download PowerPoint slides from universities with histological images that I'm not equipped to understand, and I see these images of kids with giant lumps in their faces that I can't relate to. I just feel so scared and out of control.

So I withdraw from school and move back home to Toronto to stay with my dad.

Because I was diagnosed by a dentist, I find myself in a posh downtown office of an oromaxillofacial surgeon who tells me that I have a cancer affecting one of the million salivary glands in my mouth and that we just have to get it cut out. What that actually means is that I need to have extensive surgery on my face.

So he tells me that I'm lucky. He tells me that I'm lucky because all we have to do is cut it out and that I probably won't need chemo or radiation and that I should probably go buy myself a lottery ticket.

But I don’t feel lucky, and this is really hard because I'm scared and I'm worried and now I'm not sure I have the right to feel that way, and it makes it really hard to come to terms with my illness. At some point, I even wonder whether I'm allowed to join a cancer therapy group or not.

Anyway, they schedule surgery for the middle of Canadian winter, so April. And on a brisk morning, my dad and I walked to this hospital. We could see our breath. They put me under and over the next 10 hours, they cut out my upper left jaw and my trigeminal nerve, which is the nerve that goes from your face to your brain and that basically does all the sensation.

When I wake up, I find myself in the recovery room. I'm really thirsty and I'm sore and I'm swollen, but I actually have to pee more than anything. I motioned to the nurse and I'm like, “I have to pee.”

And he says, “Go ahead.”

I looked down and I'm naked, and I'm not supposed to be. I wasn’t naked going in. I wasn’t ready for this. I'm a vain 20-something. This is not… and then I realize I have a catheter in my penis and I'm not sure how that got there and I feel absolutely scandalized. This is not okay.

A few hours later, the surgeon walks in with a big smile on his face and he says he cut out all the cancer and more. But what this leaves me with is a giant defect, or what they call a defect, which basically means I have a hole connecting my nasal cavity to my mouth. And to help the healing process, they pack that up with gauze and then take a little piece of plastic and screw it to what is left of the roof of my mouth to keep it in place.

As you can imagine, this starts to get putrid and I start getting the worst breath in the world. It gets so bad that my sister actually convinces Listerine to donate breath strips so I can go through the day without grossing everyone out.

Eventually, they take it out and I'm back with this defect. I go back to school the next term and, basically, I have pain around the defect and along my scars. And they tell me, “Manage your stress and take some pain meds and it’ll pass.”

So a year goes by like this, and the surgeons decide that I'm going to have reconstructive surgery. But what that really means is that they’re going to peel off my face, take bone from my hip, put it in my jaw to rebuild it, take the muscle from my scalp, rebuild the roof of my mouth and my jaw and then saw me all back up.

Surgery goes well. They come back, they’re so impressed with their workmanship and their craftsmanship. They closed about how wonderful it looks. But a few weeks later, I start to develop excruciating pain. One day, it’s so bad that the only way I can cope with it is to scream in a pillow. And it just gets worse and worse.

I go back to the surgeons and they realize that the surgery is not working. They get upset and confused and they put me on every experimental treatment they can think of. They put me on constant antibiotics. I get what I like to call a medical gag order. I'm not allowed to talk or eat solid foods for months.

As this is going on, the flap is getting worse and worse and worse and they start accusing me of sabotaging the surgery somehow, hitting it with a toothbrush, talking when I'm not supposed to, eating solid foods, all of which I haven’t done. And I start to feel really guilty that I'm somehow letting down the surgeons and that this is my fault and my body is just not healing right.

So on my 22nd birthday, the surgeon decides that the surgeries failed and he pulls out these oversized clippers and tells me to open wide. He starts to clip out bone out of my mouth and all I feel is tugging and hearing snap, snap, as he pulls out these shards of bone from the roof of my mouth.

Then he tells me there is nothing else he can do and sends me on my way, and I'm absolutely gutted.

I go back to school the next term in excruciating pain. Some days, the pain is so bad that the only way I could fall asleep was that my dad would put his hand on my face and that would calm me down enough to sleep. But I'm back at school and the pain is there and it’s horrific and it gets worse when I'm stressed or I'm tired or I'm emotional, all of which are occurring at school and no one understands.

My friends tell me to stop being so dramatic and to stop exaggerating and to just stop talking about it or whining, and so I feel more and more isolated. So I start going back home a lot more often to hang out with my dad because he's the one place I do feel safe.

The following term is my last year of school and I start to think about my future. I need to get my life back on track. I take my first neuroscience course and I fall in love with neuroscience. It’s absolutely mind-blowing. I'm so excited.

Then on one of those drives back to Toronto, I hear a radio show, CBC’s Ideas with Paul Kennedy, and it’s about pain research in Canada. I listened to it so closely and I learned so much. And I know immediately what I want to study. I want to study pain and I want to look in the brain.

So I start applying to every grad school that offers a neuroscience program. In March of that year, my dad drowned. It was really hard, and it was especially hard because we’d grown so close over those last few years and he’d become my best friend. But my family is resilient and my siblings would never let me give up. So when I did feel like all hope is lost, they pushed me and they said, “No, you have to keep going,” and so I did.

I got an interview at the University of Toronto and I showed up to the interview. I was really excited, but the grad coordinator was really concerned that I hadn’t secured a lab. It was really late in the process. It was about April, and she’s like, “What are you going to do?”

And I pulled out this list of professors that I was really excited to work with, and I forgot the list. It was in Ottawa on my desk and I was so embarrassed. I explained to her what had been going on and why I was such a mess.

And she said, “Okay, tell me what you want to study.”

I told her I really want to study pain and there is this woman at U of T who studies pain using MRI, and this is exactly what I want to do.

She kind of sits up in there and she’s like, “That’s me.”

I'm so embarrassed. I'm even more mortified and I'm so unprepared. So I make my case and I plead with her and I tell her why I want to study it and why this matters so much to me.

A few weeks later, she emails me and she says, “You have a spot in my lab to study facial pain,” and I'm over the moon. I'm so happy and I'm so heartbroken I can't tell my dad and I can't share this moment with him.

But as the years go by in my PhD, I start to learn about pain and chronic pain. I now have the word for what I'm going through. I start to develop strategies to worry less about it. And the more I learn, the less I worry and the less I worry, the more it fades into the background.

So I have another surgery with a new surgeon who rebuilt my face, and I'm back at school within two weeks. I'm so motivated and I'm so excited to keep learning.

And so in all of this, I realize that by studying pain, I regain control. And that was the control that that 20-year-old didn’t have when he threw the phone against the wall. Thank you.

Part 2: Paul Battista

There’s an old saying that says, “Man is the only animal that knows how to weep and to laugh, because he's the only animal that knows the difference between “what is” and “what should be.”

In my life, “what should be” is that my beautiful 22-year-old daughter, Leah, would be sitting out there with all of you. I would be telling a very different story up here and she would be smiling back at me. But that’s not ‘what is’.

“What is” is that Leah’s cremated remains sit in a beautiful, Tiffany blue urn on her desk in her too‑quiet bedroom because the combination of a deeply flawed medical diagnostic protocol and a negligent emergency room physician caused her death. My only child, the light of my life, my spectacular girl.

Even after all these months, I still can't quite believe it’s happened and so what will happen is these vignettes of that worst week of my life will come back at me.

It’s Friday morning. I step out of the meeting to take a call from Leah. “Dad, my back is really hurting.”

I'm brainstorming with her on how she could help alleviate the pain. I tell her what I did when I had a back spasm a few years earlier.

It’s Saturday morning, I wake up and see a text from her. She sent it Friday night, around midnight, “Mom, Dad, I went to emergency. The pain was really hurting. Doctors checked me out, sent me home with Advil. I owe my roommates so much. They stood with me the whole time. Love you.”

Paul Battista shares his story with the Story Collider audience at the Gladstone Hotel in Toronto, ON in January 2020. Photo by Ben Ma.

It’s early Saturday afternoon. I'm Facetiming with Leah. I can see her face. She’s scared. She’s in pain. She’s crying. I'm staying calm. “Girl, you need to get back to the hospital right away. Tell them what you’re feeling.”

It’s later Saturday afternoon, another text from Leah. “Dad, Mom, they checked me out. They gave me a puffer, sent me home. I'm feeling better. Really looking forward to seeing Mom tomorrow. Love you.”

It’s Sunday night and I received the last text from my girl. “Hey Dad, tried to order pizza for my roommates. Card wouldn’t go through. Do we have a problem with our credit card?”

It’s 4:50 a.m., Monday morning, the phone rings. Wrong number. Ignore it. It rings again. It’s Leah’s roommate. “You need to come to Kingston General right away. Leah’s in a coma. She’s in an unstable condition.”

It’s later Monday morning. After an incredibly, incredibly painful two-and-a-half hour drive, we arrive at the hospital. The nurse takes me in to see my daughter. She’s lying in the bed. As the tears start, all I can hear is the sound of the ventilator pumping air in and out of her beautiful lungs.

The doctor tells me she had cardiac arrest as a result of a massive blood clot in her lungs. The good news, he tells me, the good news is that her cardiac arrest was witnessed by paramedics. She’s young, her brain is young.

It’s Monday afternoon. We’re sitting around Leah’s bed. The head of Neurology from the hospital comes in. He tells us he has just seen the EEG of Leah’s brainwaves. The prognosis is poor. He isn’t sure if she’ll ever come out of the coma. If she does, she won't be the same girl.

I watch my wife collapse at the foot of Leah’s bed, sobbing.

It’s Tuesday morning. A new doctor is in Leah’s care. “I'm not giving up on her and you shouldn’t either.” We are buoyed. We’ve been holding a 24-hour vigil at her bedside. Her friends, her roommates, my family, no one is leaving her side. We’re playing her favorite music. We are telling her favorite stories. We are doing everything to bring her back to us. It’s a waiting game.

It’s Wednesday night. My wife and I head up to the floor where the people who have patients in the hospital sleep. We push our cots together, we take our sleeping pills. We reach out to hold each other’s hands and start sobbing and sobbing and sobbing until the sedation puts us to sleep.

It’s Thursday morning. We meet with Leah’s doctor at her bedside. She’s somber. Last night, Leah’s brainwave activity changed. They want to do another EEG and they do one. She’s so sorry. Leah’s moving toward brain death.

It’s Friday morning, and I'm in a nightmare I can’t get out of. I'm meeting with a woman who wants to talk to me about organ donation.

She comes in and I say to her, “I’ve never spoken to my daughter about organ donation, but knowing the kind of girl she was, I'm pretty sure she’d be supportive,” and she looks at me surprised.

“You don’t know? Leah’s signed up for full organ and tissue donation.”

So for the last time in her sweet life, my daughter makes me incredibly proud.

It’s Saturday morning, we’d come to say goodbye. I walk into her room and she looks so beautiful. Porcelain-white skin, long brown hair, the night nurse had washed and braided it. She cuts off a braid and hands it to me.

We say goodbye.

On my hardest days, those vignettes come at me and they’re accompanied by a talk track, a narrator who is interjecting, trying to change the course of the outcome of the story.

“Ask her if she’s been on any new prescription drugs.”

“Push the hospital to admit her. Something’s wrong.”

But the story always ends the same. In six short days, I lose the most important person in my life, the person I love more than life itself.

In the days and the weeks and the months after Leah’s death, my life is in freefall. My world is simultaneously one which I see as very familiar and as completely unrecognizable. I know I'm still coming to grips with all of the ways in which my daughter’s death has changed my life and will change it, but one of the ways it’s changed me has hit me to my very core in the most profound way.

From the moment her beautiful heart stopped beating, I have been in a true existential crisis. Every day, I ask myself those big life questions. Who am I? What is my purpose? How do I find meaning?

And this sense of purposelessness is so strange for me because up until she died, I had led such a fortunate and full life. And because of that, like many of you, I had so many ways to answer the question, who am I?

I was a son to a wonderful mother, a brother to three amazing siblings, I was a friend to countless individuals who I’d known for decades in my life, a husband to a loving wife, I was a partner in a large firm where I was a supportive colleague to many people in that firm, and yet, and yet, the moment her heart stopped beating, all of these aspects of who I was, what made me ‘me’, seemed to diminish into insignificance.

So I began to think about how I could change. And this sense about “what I was” and “who I was” was something I was grappling with. Each and every day, most days, I would enter into the world, I would be in the world but not a part of it. There was a separateness that would envelop my existence. It was though I was living in one reality and everyone else was living in another.

And I would look at people in my life, my colleagues, my friends, strangers and I would be amazed at the energy, the enthusiasm I would see them putting into whatever they were doing, work or play. I couldn’t understand why they would do that.

I would have a silent conversation with them. “The person you love most in the world will die one day. You will die one day. Why are you spending your time this way? Why? Why?”

It was as though my life, to use an old IT term, had been knocked offline. And in the last number of months, I had been trying hard to, as we used to do with those old systems, reboot it, get it back online again. And everything I tried had failed.

I have understood that much of why I was feeling this way was because so many of the things that gave me joy in my life - music, the arts, food, travel - are so interconnected with who she is to me. So as I try to understand how I move forward without understanding, I think about how my life can be without her. I dove hard into mindful meditation because I looked back in my life with her, and when I did that the pain of those beautiful memories just brought the pain and anguish so, so hard to me. And yet when I looked forward and contemplated life without her, I was filled with despair. So when I looked back, I had pain and anguish. When I looked forward, I had pain and despair. I thought that, really, if I could just stay in the moment, moment-to-moment of my life, I could alleviate most of my suffering.

And it helped, but it still didn’t solve the problem of meaning in my life. So I struggled.

And I read, and I read, and I read every grief book I could grab. I started to notice there were a lot of references in every grief book to another book, a book that was called Man’s Search for Meaning by a gentleman named Viktor Frankl, and I realized I had actually purchased that book a couple of years earlier when Leah had moved away to the UK to study for first year university. I realized I was at a crossroads in my life and I thought the book might help me, but I had not read it.

So I went poring through my house, bookshelf after bookshelf searching for it. Finally, I found this impossibly thin, hard-covered book, pulled it out and began to read it.

And as I read, I was struck by a phrase in that book that hit me so powerfully, “When we are no longer able to change our situation, we are forced to change ourselves.”

I read that over and over again. ‘When we were no longer able to change our situation, we are forced to change ourselves’. And I realized that as much as I would do anything to bring my daughter back, it was never going to happen. She was gone forever. So I had to change myself.

And I realized that when I thought about that, how I could change, there were really only two paths in front of me. I could become a bitter man or I could become a better man.

I knew because of the way Leah died, the world would accept me to become a bitter man. In fact, the world might even expect me to become a bitter man. But I also knew that if I did anything other than become a better man, it would be such a terrible indictment of everything my sweet daughter’s essence was about.

And so I chose to become a better man. I chose to become a man who when my obituary is written will say, “Hey, Paul was a pretty decent guy before his daughter died, but when she died, he found another gear.”

I founded the Leah Battista Foundation. It’s a Foundation that’s dedicated doing the work that I know my daughter would have been committed to doing with her life’s work had she lived. And every day I ask myself the question of how I can be a better son, a better brother, a better husband, a better colleague, a better friend. How can I be a better man? And the honest truth is most days, I don’t have an answer, but I know that in asking the question, eventually the answers will come. And although I know those answers will never provide me with any kind of sliver lining, my hope is that these answers will help me to reconcile the difference between how things will be for me over the rest of my life in a way that reconciles what it ought to have been.

Thank you.