Something felt wrong during one of Morhaf Al Achkar’s regular runs on the treadmill in late 2016. He started gasping for breath.
“It became really hard to run,” he said. “That sudden development of shortness of breath alarmed me.”
Al Achkar had recently begun to work out with a trainer, as he had been feeling weaker than usual and wanted to rebuild his strength.
Being a family physician in Indiana at the time, he asked a resident at the clinic where he worked to listen to his lungs. “There’s no air moving on the left side of your chest—that doesn’t seem right,” Al Achkar recalled hearing from the resident.
An X-ray taken immediately after hinted at why. The entire left side of his chest glowed white, indicating a massive amount of fluid built up there.
A few weeks later, Al Achkar received devastating news: he had stage 4 ALK-positive lung cancer. He estimated that he would live for just another six to 10 months.
He began a treatment regimen with crizotinib and continued working at the clinic, a choice that many colleagues questioned. He remembers one resident saying, “You’re seeing patients…and you’re almost as sick as they are—what are you doing here?”
And today—nearly eight years after his devastating diagnosis—Al Achkar is still working, now primarily as a researcher and educator.
“[When] cancer became part of the picture, it struck me that my life project was going to be cut short,” Al Achkar said to Deborah Doroshow, assistant professor of medicine, hematology, and medical oncology at the Tisch Cancer Institute, Icahn School of Medicine at Mount Sinai.
Doroshow, who is also a historian of medicine, is a member of the editorial board of the Cancer History Project. Their conversation is available on the Cancer History Project podcast, above.
The cancer news came amid a time of big career changes for Al Achkar, who was 33 at the time. He had finished his residency training a few years earlier and was pursuing a PhD in education. And he had just agreed to move halfway across the country by signing a contract for a position at the University of Washington.
“I was excited for things to come in my life,” Al Achkar said. “A cancer diagnosis meant potentially abortion, or an end, for some—if not all—of those projects.”
Despite his waxing and waning energy levels from the treatment, Al Achkar continued to seek out activities he enjoyed and live life to the fullest. He even searched for love and went on dates, knowing that any potential relationship could come with a short time limit.
“Generally, we take for granted that we’re alive, and that we’ll be alive tomorrow,” Al Achkar said. “It’s not easy to plan in life when you don’t know how long you’re going to live.”
Soon, though, he began to realize that death wasn’t imminent.
Al Achkar’s health remained steady, so he stopped questioning each night whether he would wake up in the morning. His treatment seemed to be working, too. Much of the fluid in his chest was gone, and it didn’t reaccumulate.
Over time, his follow-up CT scans began to be spaced farther apart. He realized at an appointment that he had another few months to live. Six months later, it happened again. And again.
Eventually, Al Achkar stopped living with short-term, less-than-year-long goals in mind. His mindset started to shift.
“I survived cancer, so this is in my past,” he said.
In early 2023—nearly seven years after the diagnosis—Al Achkar applied for his current faculty position, associate professor at Wayne State University School of Medicine. He began to apply for multi-year research grants, and even accepted a leadership position that he now holds as associate center director for education at the Barbara Ann Karmanos Cancer Institute.
“I would not have taken this position, were I not a survivor of cancer,” he said. His shorter projected lifespan motivated him to take on a leadership role so that he can make a bigger impact with the time he has, Al Achkar said.
But he has also been transparent throughout his cancer journey. Al Achkar publicized his diagnosis early on through social media, and viewed it as a way to document his life for others to see and learn from.
Nowadays, he said, many people know about his cancer story before he even meets them.
Al Achkar wants to use his privilege as a physician living with cancer to help others. During the early days of his treatment, he could look up the latest research himself and received support from his eight siblings, who are all physicians or researchers.
But he recognizes that many people from marginalized communities don’t have such resources, which can hinder treatment. “Equity and access to information that can help the person make a decision still is a challenge today,” Al Achkar said.
In the years since his diagnosis, Al Achkar has interviewed people living with lung cancer for both qualitative research and his book “Roads to Meaning and Resilience with Cancer”. He can connect with those individuals on a deeper level, as a survivor himself.
Although qualitative researchers are often thoughtful and considerate, he said, “when you don’t have the language—when you don’t have the lived experience—you’re still treating the other as an ‘other.’”
And one of his projects has focused on the experiences of Black people living with lung cancer in the U.S. The goal is to examine the health disparities they face. Al Achkar recognizes that social injustices brought on by racism, poverty, and lack of education play a role in cancer outcomes.
“When it comes to the disparity, living, surviving while others don’t comes with a moral burden,” Al Achkar said.
“When you are aware enough to recognizing that others are not [alive] because of injustices in our system…you feel like this is wrong and that something needs to be done about it,” he said.
The full conversation between Al Achkar and Doroshow is available on the Cancer History Project podcast, above.
Transcript
Morhaf Al Achkar: Thank you very much, Debbie, for having me. I am a family physician by training, originally from Syria. Came to the United States in 2006, finished medical school back home. Did my residency in Florida, went to Indiana, took a faculty position as a family medicine attending, and lived in Seattle as well, for a few years.
And now, currently, I’m in Detroit. I work at Karmanos. Karmanos is a cancer center. I’m associate director for education at the cancer center, and I am a stage 4 lung cancer survivor with AlK positive since 2016.
Wow. First of all, you’ve lived all over the US, and you have some really unique experiences that we’re looking forward to hearing about today.
And in addition to all of your career successes, do you want to tell us a little bit about who you are as a human, and what you like to do in your free time?
MA: Yeah, yeah. As I consider myself an artist, I do play music. I play oud, which is an Arabic instrument. Lute is another name for the instrument. It’s a fretless guitar, you can call it, very soulful.
I write poetry, I write songs. I have an album out, and the next album is coming soon. I also started dabbling with standup comedy, I enjoy that. Laughing, making people laugh, is definitely something I enjoy. In my family, I’m the youngest of nine. We are all doctors, thanks to my mom.
MA: All nine, between MDs and PhD, and I actually have MD and PhD myself. My mom, bless her soul, really worked hard to make sure that we were moving that direction.
And it seems like she did it seamlessly, because, just working on the oldest, they started to set role model for the younger ones. As the youngest, I got to learn from everybody’s experiences and mistakes and successes. So, I feel very fortunate to having been raised in a large family, with loving parents and siblings.
As I said, I’m from Syria, so many people in my community have been affected with years of war and continued struggle. So, that’s definitely, part of my soul still is back home, and is with the people that are struggling and suffering in Palestine, and in Syria, as well.
So, that’s definitely important part of my lived experience, and who I am, connected to my Arabic culture with language, with poetry, with the music, and of course, with the good food. That’s something, definitely got me excited about that move to Detroit, where we have a very large and diverse Arabic-speaking community, and broader MENA population.
So, I like it. I like it here a lot, and I’m enjoying as the most human thing, that I’m still alive, and I’m enjoying that.
MA: Yeah, so that was in 2016. I was feeling a bit weaker than usual. Maybe if I look back at some of the photos that I took at that time, I did look that I have lost some weight. So, I started working out, and trying to build the strength again, and feel better overall. But in the middle of that exercising session with my trainer, suddenly, I felt really short of breath.
I was running on the treadmill, which I had done with him for, probably at that time, maybe five or six times, suddenly, it became really hard to run. So, that sudden development of shortness of breath alarmed me. I was a family physician with access to clinic, and some colleagues.
I was actually an attending there, and I got the third year resident to listen to my lungs, and he’s like, “There’s no air moving on the left side of your chest. That doesn’t seem right.” So, I went and I got an X-ray at the radiology department, and when I looked at it myself, the whole left side of my chest was white. So, I had a massive pleural effusion that turned out to be malignant.
I took my X-ray image and went to the emergency room, telling the doctors, “This is something not right. I’m short of breath, and this is what I found.” So, that was definitely, they acted quickly on it with a CT scan.
That night, before midnight, I got fluid taken out, and then, in four days, I got the diagnosis that there were malignant cells in the fluids that were cut. So, the story is not different than many, many patients who get diagnosed with lung cancer, unfortunately.
Of course, I’m among, one of the lucky ones, to then later be found to have an oncogene, and that leads to an actionable treatment, targeted therapy that I take, I took since then.
MA: I wasn’t thinking cancer at that time. I was 33 years old, and I was definitely not thinking lung cancer, specifically. During that time, I remember, actually, the drive back home. There was that idea in my mind, “Will this be over soon, and I can go back to resume my life as is?”
I was thinking about my chest and, “Wow, it’s so much fluid in there. It’s definitely not right.” And I was maybe thinking of the possibilities. I mean, my heart was fine at that time. To develop heart failure is unlikely, especially unilateral, as part of my physician thinking, “Maybe it’s only some pathogen of some sort,” but still couldn’t pinpoint, and I’m anticipating the results. But part of me was thinking about what’s beyond this experience, that I was hoping or anticipating, or based on my previous lived experiences, those funky experiences, funky stuff that happened on the path of someone.
They have a timeline, and they’re done, and they continue to live your life with some sort of modification, or maybe not. That was on my mind. But then, when the pulmonologist shared that there were malignant cells in there, that immediately struck me as, this is a different path that says, “That’s the only information that were available, malignant cells.”
MA: I was, yeah. I was living in Indiana. I was a single guy, and in the emergency room, I was by myself. Then, later, with the visit to the pulmonologist, I was by myself.
But then, a couple of my sisters came, actually, to visit immediately after, and that became more burdensome than help. I mean, they’re lovely people, of course, but as a guy who’s been independent, now, I got cancer.
MA: You’re going to leave your family, and come and live with me, to watch over, and feed me? I was still all right at that time, still processing. So, they stayed for three or four days, and then left.
But that moment, the idea that cancer became part of the picture, it struck me that my life project was going to be cut short. That’s what led to the first round of tears after the news is that, almost like a first episode of grief, if you want to say that.
I had many things that I wanted to do at that time. I was pursuing a PhD in education research methods. I had only four years, four, four or five years, finished residency and I was faculty.
I had actually signed my contract to move to University of Washington, to move to Seattle. I was excited for things to come in my life. And then, a cancer diagnosis meant potentially abortion, or an end, for some—if not all—of those projects. That felt sad.
MA: So, my eight siblings, definitely, and my dad, as well. I remember when I got the diagnosis, and I went home, and I had a Skype meeting with them, and I shared with them that this is what’s happening.
And then, that same night, actually, I shared it on Facebook, told people that I am starting my journey with cancer, and send me thoughts and wishes. I wanted to be public in my lived experience.
Because I think part of me, feeling the urgency, or the end of the life project, I thought, and I’m a teacher by heart, even as a family doctor, I probably take pride the most in my role as an educator.
Consider our role as physicians. We give access, we make accessible to people, knowledge and resources that make them choose the, hopefully, best available option for them.
Among the tools that I had, I wanted to share when I say, “Hey, this is going to be my journey,” and I am leaving it almost for peer reviewing, my peers being the rest of the humans that I as a clinician, as a human, as a person, as all of the above, as a person learning, learning about learning.
Again, my PhD is in education. Here’s how I decide to carry on with my life, in whatever days, weeks, or months left for me, imagine this in 2016, and it’s still, even, I mean, I’m a clinician, but still, molecular testing were starting to be a big thing, but it’s not still in the mainstream education of clinicians, especially in primary care.
This is more of an area of a specialist. For me, it was still lung cancer, I mean, probably six months to 10 months of life.
MA: Yeah, yeah, I did quite a bit of that myself. I remember, the first thing that I think left an important mark in the trajectory, and potentially, actually on the outcome, as well.
I got the diagnosis on Wednesday, it was the eve of Thanksgiving. So, Thursday was Thanksgiving, Friday was off, and the doctor said, “No, we’re leaving for a vacation, for holiday, and I’ll come back next week.”
Comes Friday, a colleague of mine connects me with a lung cancer patient who said, “You need to get your molecular testing ASAP,” as in, “They need to put the orders now, the tissues, biopsy or whatever, fluid biopsy, taking FNA, or the fluid is taken, so they need to send them for molecular testing.”
In my mind, I was like, “What does that mean?” I had no idea what that meant. I’m like, “Okay, so what can I do? I’m going to call pathology, because pathologists are who got it.” And I said, “Hey, I want you to add molecular testing to my panel.”
It was like, “What tests do you want?” I’m like, “I don’t know what tests I want. Just get the good ones.” And that didn’t move forward. So, it was until Monday.
Monday comes my first visit with the oncologist, and this is an interesting thing about our health system, and how it fails even the most resourceful people. Comes Friday, I called to make an appointment with the oncologist, because my doctor said, “Next week, we’ll carry on.”
“Can we carry on right away?” So, I called on Friday, and I picked my favorite oncologist among my colleagues. She wasn’t available, so I picked my second favorite.
He was available, fortunately, and he said, “You know, we’re going to make you an appointment for Monday. But somebody is going to call you.”
Nobody called me. Comes Monday morning, and Monday morning … Of course, this is not in Karmanos, this doesn’t happen in Karmanos. That was in a different place.
Monday morning came, and nine o’clock, I mean, nobody called me. It was supposed to be in the morning, and I called, and they said, “Oh, your appointment was at 8:30. It’s over, and the doctor is leaving, we can see you in two weeks.”
I’m like, “No, I’m going to start driving, and you’re going to see me in the morning.” And I hang up, and started driving.
And actually, the nurse then, finally, is like, “Okay, we’re going to see you. The doctor will squeeze you in.” So, the doctor saw me.
I give you just another example of how that time, and this is, actually, I believe is still taking place, and you probably see it with research that takes place around molecular testing, and its provision to different patient population.
In Karmanos, for example, we have protocol. If you have advanced lung cancer, you are going to get molecular testing. That’s for probably true for most cancer centers, fortunately.
If you’re not at comprehensive cancer centers, sometimes the practice varies. That was, I mean, even back in the day, that was 2016. So, maybe we give quite a bit of grace, but at that time, we’re still starting to get an indicator that this is from the lung.
The doctor was like, “You know, advanced lung cancer, stage 4, chemotherapy, radiation, and some people are starting to do genetic testing.” I’m like, “Yes, that’s the keyword. I heard it on Friday, I want that.” So, he kindly went forward and put the orders. Then I came back to be ALK positive.
MA: Probably not too long, actually. Maybe two weeks, I would say, or 10 days, something in that space.
So, I would say, I think I started, I got diagnosed, a total 20 days, until I started treatment. My AKI, my medicine first medicine, I think I got it in 20 days after, or something in that range.
Just to see some contingency here, so this is a lived experience of someone who is informed, who’s educated, who’s capable of having those conversations. So, how is it happening in the experiences of other patients, the ones who maybe didn’t have access to education, maybe health literacy is a challenge? So, that becomes very troubling for me.
This becomes a challenge, that equity in our health, the provision of resources, we can’t say we’re advancing or leading mark in cancer management. If we’re only providing that to the ones who have resources. And we’re missing people. And that continues to happen.
MA: I had UpToDate. So, I did look at UpToDate, and I used PubMed. I’m a researcher, so I know how to find studies. Also, my siblings, three of my sisters are professors here, and researchers. So, everyone in the family were helping to bring information, and share information around that. So, that’s definitely that network, that we know is protected.
On the other hand, imagine you’re the only one who is a college graduate, where you have very little, very small network. Or actually, even now, the networks there are in social media, Facebook, for example, and other, there are pretty robust networks.
But unfortunately, if you’re a person from minoritized, marginalized group, you’re going to look in that group, and you’re not going to find people like you. So, you’re likely not to be engaged, you’re not likely not to feel included, and that might be a deterrent to access useful information. So, I think that continues to be a challenge.
Equity and access to information that can help the person make a decision still is a challenge today. Today—I’m talking about 2024, not again, 2016.
I’m wondering about what it was like when you started treatment. What were you told treatment would be like? What were your concerns and hopes?
MA: So, 2016, the medicine that was available was crizotinib, at that time. Alectinib, the trial only came a year after, so crizotinib, I cried when I knew that it was ALK positive.
Because at that time, I was hoping EGFR, actually, but when, ALK came, it’s like, I mean, just by statistics, EGFR is more likely. But ALK, it was like, “Oh, I’ll take it, I’ll take it.”
But I think, crizotinib, at that time was, compared to chemo, maybe a few additional months by that time. It’s not by much. It’s not like, “Okay, we got this medicine, we’re going to be cured.”
But that, for someone who’s anticipating to die in six to 10 months, give me a few more months. That’s quite a bit. That’s a lot. Also, the other thing is, you are not going through the hell of chemotherapy, or the side effects, or the suffering, that can sometimes be worse than just letting time pass. So, it was a major relief for me, and I tolerated the medicine fairly okay.
I would say, I mean, the side effects, again, compared to chemotherapy, probably nothing. But definitely, I was dealing with fatigue, I was dealing with, I was exhausted, mentally, physically, and emotionally, as well. The experience was not easy, in the first, I would say, many months, in the treatment. In the treatment of surviving, I think that’s typical to cancer patients’ experiences.
I mean, part of the suffering, I would say, what makes it particularly hard, of course, I mean, energy is a factor. The uncertainty is another factor, the emotional burden, and the decisions that you have to make with your life.
And that became part of what I actually carried on to ask people about, and to learn about their unmet needs. Just to take one big challenge, it was like, you don’t know how, it’s not easy to plan in life, when you don’t know how long you’re going to live.
Do I have a year? Okay, so maybe I will go… Many people would say, “Go to Hawaii. Why are you still working?” That’s actually one of the residents. “You’re working here, you’re rotating, you’re seeing patients, and they were probably, maybe you’re almost as sick as they are. What are you doing here? Why don’t you go somewhere?”
Other people would ask, “You have your retirement. Do you keep working to build more retirement, or do you get your retirement up? You spend it, you enjoy life.” Other question, do you spend it with your family, or your … So, those are all part of the uncertainty.
MA: That’s also part of the burden, for me, becomes, the challenge is, live as you’re going to die. This is a proverb. “Live for today as if you’re going to die tomorrow, and live for tomorrow and after as if you’re going to live forever.” So, it became the challenge of doing both.
That becomes almost a dual process in your mind. You’re either living at the intersection of both, as in being selective, doing the activities that really matter for you today, and tomorrow, or challenging yourself with doing the activities that matter for you today, or tomorrow.
And then, the great limiting factor becomes your energy. I definitely had quite a bit of those ups and downs, partially because I would swing back and forth, and I would grapple between wanting to enjoy life. I want to go out, I want to go out on a date. I remember the first time, I said, “I’m a single guy,” still am.
So, I would be like, “Tell my family I’m going on a date.” Probably five or seven days after, that’s always a big thing, that was a milestone for me.
I mean, a quick milestone, but in a sense, it says that I want to still live life, and I want to still look for love, even though I may not live for very long. And that question always came with, especially in the first few years, “Am I entitled to search for love?”
Well, that’s a no-brainer. Am I entitled to search for love and intimacy, and a connection, that potentially can last for long? Well, yeah, if you find somebody who loves you, and they know what’s going on, so by all means, go for it. Those are some of the milestones.
So, again, I’d say, living life, enjoying it, being in the moment, and living for tomorrow. That’s a bit of a stretch for a mind that’s generally, we take for granted that we’re alive, and that we will be alive tomorrow, and we take for granted that we can jump on pathways.
In academia, you jump in, you find a job, you become an assistant professor, you become an associate, full professor, you get a leadership position. Of course, you’re working, you’re making income, you’re saving, and you’re retired. Then you start talking, you grow through it.
That’s a path, and it has a structure, it has safety. You don’t need to reinvent it. But when you don’t know what what’s going to come around the corner, becomes a bit burdensome, in terms of planning, and anticipating and calculating, and, “What if, and what if, and what if? Should I do it, should I not?”
MA: I would say within 10 days. Because within 10 days, again, it’s kind of funny, but that question got answered multiple times, and in different ways.
I would say, for example, every six months, when I get a CT scan, it comes to me that I think I’m going to be alive at least for the next few months, right?
I can see my brain, now, starting to grab that. I grapple or comprehend that I had six months. I lived, and I was fine here, check, fine, I could survive six months.
That milestone is achieved. So, then, I could survive another six months. That becomes, that six months’ periodicity of my life is definitely an important structure.
But I would say, a funnier, but it’s still a real part of the experience, I had this massive fluid in my chest. And I realized that, “Okay, well, I was in my mind, I’m healthy, fine,” and then, suddenly, I have five liters of fluids around my heart, and I’m barely breathing, and is this going to get worse, or is it going to be …
So, you check one point, another point. Is this point of decline. Or is it point of improvement? I don’t know. I have no information.
But then, five, 10 days, I wake up in the morning, and I was like, I would go to bed. I’d be like, “Oh, I may not wake up. What is death like? Death means you’re just, you to go to sleep, and you don’t wake up.”
And then, I would wake up every morning, I’d be like, “I think I’m going to be alive for some time. I don’t seem to be declining. I don’t seem to be quickly rolling down on that path, so maybe I’m not going to die very soon.”
That came quite quickly, especially after the treatment then started to work through it, where part of it drained out, but part of it was absorbed and didn’t reaccumulate. So, those are all giving me signs that maybe my death is not imminent, but still, that idea that it may not be imminent, but this medicine that I’m on may fail, and likely would fail.
So, maybe I have, I’m living for short-term goals that maybe stand for, I’m planning a project, my projects are less than one year in duration. It wasn’t until I hit probably the six years’ milestones, I would say, six, or now, I hit seven, that I started to think … That’s when I applied for this job, and now I’m looking for grants that are five years, R01.
Okay, well, five years. Yeah, I lived seven years, so why not? In my mind, it’s imaginable. I applied for leadership positions in again, associate director for education, and I’m presenting myself as, “I survived cancer, so this is in my past.”
I’m a survivor. But six, seven years, I mean, I do remember, early on, at least I had that perception, I felt that it’s kind of, maybe in the air around me that, “Do I go for a leadership position? Do I go for a step up?”
Which was for me, important, because imagine my life project. I want to leave impact. Justice is important for me, leaving impact in people’s lives, so they can self-actualize, if we can support conditions around them.
That’s part of what I want to do. So, now, my life duration that’s given to me is shorter. If I jump to a next level, with leadership position, my impact would be bigger. So, not just teaching, I’m not just taking care of one patient. Maybe I’m teaching residents to take care of others. So, that becomes a full priority.
Doing research, writing a book that can be accessible. Those are all within that framework. Leadership becomes part of that, because you’re sitting at a table, you’re touching others with your mindset, maybe dialoguing with others, who have impact, as well. Having a seat at the table became important.
But still, I felt, having a cancer was a barrier to me, and maybe, and this may touch on a sensitive subject on the experiences of survivors, and their surroundings… One patient would say, “Who would hire a stage 4 lung cancer patient, if I lose my job right now?” That was definitely on people’s mind, when they’re … in a survivor’s mind.
Was it not on the employer’s mind, when I applied for a job, or when I applied for opportunities? I don’t know.
MA: Everybody knows about me, before even, they talk to me. So, that’s there. And again, with that, I’m not pointing the fingers, actually.
As a matter of fact now, my position where I am, social directorate of education, I have a PhD in education, of course, but I would not have taken this position, were I not a survivor of cancer.
But I didn’t get it by virtue of being a survivor. I got it by virtue of being a survivor who does research in cancer, works on disparity, who does this, who’s advocate, and has education, PhD, and this and that.
MA: I’m open about my story, of course, of course. That was, I would say, if I focus on the two elements, one is for the survivor themself, it is a milestone, when you think that, “I think I might be surviving for a few, I survived for a few more years. I might be surviving for a few more years. Let me pursue projects that would take more than six months, like writing a book, for example, or more than a year. Maybe I’m going to move city, and I start …”
When you start a job, you always set for yourself, “This is a three-to-five-years’ commitment, and then, I’ll see what’s going to happen, move somewhere else.” That’s exactly my move to Karmanos, with excitement.
But then, the other element that has to do with advocacy, I think there’s still more work that can be done to recognize strength, resilience, skills, on the one hand, and the lost opportunities, when skilled people get pushed to the margin, because of a condition that’s disabling. Disabling, in the sense, or impairing to some capacities. I mean, I think we can always take advantage.
We can always open horizons for people, so they can contribute, and for the community to benefit from them, with the right accommodation, right support, and where we can even promote them for the next level, even when they lose this or that capacity, or prospectives.
MA: That was definitely a very important part of my own development of tools that helped me survive. As I said, I’m a qualitative researcher, so, I finished my PhD, and that was the first project that I did, is interviewing people living with lung cancer, and talking to them in a series of interviews.
So, with 25 of them, I did two interviews, total of 40, total cohort first, and then 25. The other project was focusing on experiences of African Americans to look at the disparities, and why we’re not treating people with fairness. And the experience …
The first part and the second part were important for me, not just part of paying back. A big part of it is, the fact that I have skills, and I could lend voice in spaces that the stories are told about people, and not by them, and stories are told by individuals who look at them from the outside.
Even with qualitative researchers, often people are thoughtful, considerate, et cetera. But still, when you don’t have the language, when you don’t have the lived experience, you’re still treating the other as an “other.”
And we’re interpreting what they’re saying based on our frameworks, what we bring to that experience. I came with a vantage point that I had the lived experience myself, and I have the skills to do it.
So, that work was useful for me, and many people who read it among the patients, felt it resonated with them. So, I put them out in a, again, paper form. The first one was to look at their unmet needs, and how we can improve their experiences in healthcare.
The second was when was around how they find meaning, how they cope, how they build resiliency. With that particular one, I wanted, it’s called “Roads to Meaning and Resiliency.” I want it to come almost like a nudge, but not quite in a direction.
Nudge, to let the person know that you’re surviving, and you’re doing it one way, but there are other ways, as well, that you could look at, not because they’re better or worse, but to get you into a space of freedom to choose, “Do I want to do it this way, or do I want to look, and do it some other ways?” Living with cancer is isolating, but seeing that you’re not the only one, there are other people who are suffering with this.
You’re asking that question, other people ask that question, and they answered it this way or that way. Maybe you could choose a different answer.
When it comes to the disparity, living, surviving while others don’t comes with a moral burden. It comes with the moral injury, I would say. You ask, “Why? Why am I alive, and others are not?”
And when you are aware enough to recognize that others are not, because of injustices in our system, because of racism, because of poverty, because of education, opportunity that are not available, because of this and that, and the other, of conditions that humans contributed into making part of the actuality, and you feel like this is wrong, and that something needs to be done about it.
Cancer comes. Cancer kills people, and that’s fine.
I said, after George Floyd, that racism is worse than cancer. Racism is worse than cancer, because racism is our doing. I mean, cancer, we came with our genetics, and this happened, and the other, but what kills people, or what causes that inequality, are conditions that we are part of doing in our society.
So, having to being part of a space, that’s why I moved to Detroit, I wanted to be part of Karmanos, and wanted to do this work, is that being part of a group that are socially conscious, socially conscious in the sense, that aware that cancer is not just a biologic disease.
There is a person who lives with an illness, there are communities around, and to address the challenge of cancer, you actually need to start broad. Education is an intervention to prevent cancer. How many papers come to show that if you have education, college and above, versus high school and below, your outcome is much better?
Well, maybe we need to invest in that, so it can move people from high school, to college and beyond. And that’s exactly the kind of work that I do in here. Yes, a lot of it is around cancer, bringing people to cancer research.
But in the bigger picture is social mobility, where people are coming to cancer, learning about cancer, coming to participate more, let’s say, in your high school, seeing yourself in the shoes of the researcher, coming to see the clinician in their work, so you be inspired, so you can see that you also can do this work.
Quite often, people in our marginalized community don’t hear that message, that you’re going to be a doctor, right? Yeah. If your dad and mom are doctors, and rich, and going to school at the college, you’re going to hear that all the time.
But if you’re in underserved schools, and the resources are limited, and then you’re probably not hearing that. And that’s what we want our children to hear. That’s what we want when they’re in college, that yes, you can be pursuing a PhD, you’re capable, you can do it.
If you’re struggling with academics, it’s not because you lack the ability, because we can do better, to make the conditions around you better. We can give you extra support, because equity does not mean we just give the same opportunity to everyone. It means that if you need more help, we are here to give you more help.
Well, on that extremely important note, I want to thank you so much for sharing your experiences, sharing your work, and really, for being such an inspirational conversation partner today.
Thanks so much. I’m sure lots of people will enjoy, and learn a lot, from hearing your story.
MA: Thank you very much for giving me the space.
