Imagine only breathing through a straw. Now imagine only breathing through a straw while running up stadium stairs – that’s what it’s like to breathe with Chronic Obstructive Pulmonary Disease (COPD), a progressive inflammatory disease of the airway that causes shortness of breath. My dad was diagnosed with COPD in 1998 when I was 4 years old and my brother had just been born. My dad’s parents often smoked in the car with the windows up, filling his childhood with secondhand smoke. He started smoking cigarettes when he was 15 and had tried to quit for decades before smoking his last cigarette in August 1996. In 2005, he got bad pneumonia for the first time, which lasted half the year and stopped him from ever being able to exercise again. I was just 11.
My path to graduate school and science began with my dad. We both loved reading, learning, and trying to understand the world. We often spent our time together coming up with grand theories of the world while watching the birds. Our shared love of learning fuels me to this day, even in the most intimidating moments of graduate school.
I’m writing this blog about my experience growing up in the shadow of chronic disease, with a fear of death that I did not quite understand, intense grieving as my dad’s health declined throughout my graduate school career and coping with his death amidst a global pandemic.
Going to college: the fear of leaving dad behind
I had a typical freshman year experience – made new friends, succeeded on my tennis team, even stayed on campus for Thanksgiving. For a while everything was fine. It was not until I flew home from college for the first time for winter break, when I saw my 6’4″ father was down to a skeletal 140 lbs after multiple bouts of pneumonia, that I realized the reality that I might lose him while I was away from home. Somehow, even after the shock of seeing my dad near death, I was found the strength to position myself well for graduate school, starting a summer research position to put me on the right trajectory. Unfortunately, my maternal grandmother died suddenly while I was living alone on campus and her death hit me hard. I tried to continue working – often going into lab, crying my eyes out, and then going home. In the end, our final poster presentations and my grandmother’s funeral were scheduled within 24 hours of one another. I decided to fly back to Texas for her funeral and quell the intense loneliness I felt grieving her death by myself on our small campus.
After my grandmother died, I struggled with my mental health, especially after the added trauma of a near sexual assault, which I only recently acknowledged. I buried myself in activity to distract myself from the pain of her death; I got a 4.0 GPA, led my tennis team to a conference championship, was named conference player of the year and read ~100 books that year. In the midst of all these accomplishments, my grief was excruciating. I was crying at parties, wanting to transfer back to Texas, and just wanting to be where I was supposed to be, where everything would make sense – home.
Instead, I fled from my sadness, determined to act independently and in the best interests of my career. I stayed in Rhode Island to finish my undergrad and even spent 5 months studying abroad in Australia. I felt alone. I was having trouble sleeping, terrified that something would happen with my dad while I was so far away. After returning from Australia, I began working with Dr. Christopher Fagundes in his Biobehavioral Mechanisms Explaining Disparities lab at Rice University in Houston, TX. This serendipitous opportunity combined all of my previous interests into one very meaningful project, Project Heart, which aims to examine the biological mechanisms (e.g., inflammation) underlying increased risk for cardiovascular disease following spousal bereavement. Project Heart also examines the psychological circumstances (e.g., early-life experiences, depressive symptoms) that may lead to increased inflammation for the surviving spouse.
That summer, I worked with dozens of people who had just lost their spouse. Some people were so overcome with grief and anger, while others felt profound relief. I was surprised by the range of their emotions; however, the weight of their losses felt oddly familiar to me.
Despite his advanced disease, difficulty breathing, and deep anxiety around flying, dad flew for my graduation in Rhode Island – this was one of a few big events that he fought to live for.
I spent the summer before graduate school navigating caretaking responsibilities with my family. My little brother had massive jaw surgery at the beginning of the summer, which would have left my mom taking care of two men who were unable to feed themselves. Ultimately, we decided that mom would cover my brother and I would take care of my dad. I had a resurgence of panic attacks in this time – the stress of my brother’s surgery and my dad’s impending death, as other graduate students were already starting in our lab, pushed me over the edge. We all survived that summer, but my role shifted to that of a caregiver for my dad, a role that continued throughout graduate school.
Living in the shadow of chronic illness during graduate school
In graduate school, I was constantly in ‘threat-mode’ (akin to be chased by lions) because of my dad’s imminent death. I had uncontrollable crying episodes at my desk, which led to panic attacks and more impostor syndrome. I was worried about losing my dad while navigating the first semester of graduate school, which included hours-long qualitative interviews with our bereaved participants about their early life experiences and past traumas. I drove home almost every weekend, and every time I drove back to Houston, I would bawl because I did not know if that was the last time I would ever see my dad. This uncertainty lies at the heart of my distress: every time I saw him for over the past ~7 years, there was always the possibility that it might have been the last – that’s an incredible weight and pressure to place on every interaction with someone you love.
My dad protected everyone else around us from the intensity of the progression of his disease, which meant that only the core of our family was allowed to know the severity of his condition and take care of him. So, my mom was my dad’s full-time caregiver while dad masked his condition from everyone else. Spousal caregiving is particularly difficult because the spouse already has an established, reciprocal relationship with their partner. There is a blurry line between spousal and caregiving responsibilities, which means spousal caregivers stay in their role as sole caregiver longer than any other type of caregiver. As a result, spousal caregivers experience considerable caregiver burden. Chronic disease also changes the nature of spousal relationships, which, in turn, influences both peoples’ identities, and their identity as a couple. For example, my dad positioned himself in the middle of our house at the breakfast nook table, which was good to have as part of the house, but incredibly difficult for my mom to have him (and the associated equipment) in the kitchen all day every day.
Although my mom was the primary caregiver, the summer before graduate school solidified my role as a secondary caregiver. Full-time caregiving is one of the most draining jobs (and spousal caregiving is not even considered a “real” job – imagine the lost wages!). Thus, I did not do much graduate work during my weekends at home, because (1) I wanted to spend my time with my dad and help my mom, and (2) I felt like I couldn’t function at a high enough level while experiencing such intense grief/distress. The pain of seeing him struggle to breathe, much less move, was unbearable. Each time I left home, I cried with both sadness at losing my dad and the inevitable guilt of not using our limited time better.
As I continued through graduate school, dad also couldn’t read my work anymore. That was one of the more heartbreaking effects of the lack of oxygen caused by COPD – it affected his mind. He was always incredibly supportive, and not being able to share what I was working on with him felt like one of many major losses. Talking also became more difficult – if dad got worked up at all (positively or negatively), it became much harder for him to breathe and he would have to stop for a few minutes to catch his breath. I craved those moments from when I was younger, when we could debate without him gasping for breath. It’s funny, I started to write that we sat in silence while he caught his breath, but the truth is that there was never any silence in our house – the drone of the oxygen machine was constant as was the sound of his laborious breathing. The machines did not fully benefit him because COPD affects the alveoli in the lungs, making it near impossible to get the oxygen one needs. I never got used to these sounds, the machines and his strained breathing; they unnerved me because they were a constant reminder of my dad’s fragile condition and our limited time.
At the core of what I was experiencing was living bereavement, which is characterized by grief and other psychological reactions typically experienced after the loss of a close person. The process of grieving my dad while he was still alive nearly broke me. I felt an overwhelming desire to return to my childhood home and spend time with my dad, but also had to carry on with my studies.
As my dad’s health declined, I felt such an intense need to come back at every possible opportunity – I was trying to create a sense of security by being close to him. I hesitated to take trips for myself (and felt guilty when I did), because I was afraid that I would miss my last opportunity to see my dad. The problem was, I did not realize I had already lost the parts of my dad that I was seeking. That’s what made living bereavement so difficult for me – my dad was still here, and I desperately wanted more time with him, but I was already grieving the loss of what our relationship as father and daughter used to be, and what I thought it could have been if I’d known him as a younger man.
Dealing with loss
My dad passed away a few weeks ago (at the time of writing), during the global pandemic. He had a bad fall that broke his hip on April 23, and he died on May 8. You can read more about his life and legacy here. We had many end-of-life conversations over the years and, based on his wishes, we never called an ambulance and he never went to a hospital. The night he broke his hip, we sat with him on the ground for hours as his blood oxygen dropped to organ-damaging levels. The next day a mobile radiologist came to the house, confirming that he had a broken hip and needed hospice. The next two weeks were the most painful of our family’s life. All of this emotional turmoil was compounded by the fact that we knew that he would have chosen assisted suicide months earlier if it were possible in Texas.
After he died, it was the most peaceful I’d seen him look in over a decade because he wasn’t fighting for every single breath. You never get used to the sound of someone you love gasping for breath. As hard as it has been to grieve his death, it was so much harder to watch him suffer. I know he is not suffering anymore. I felt the pressures of my PhD program sting even more than usual, as both a grieving daughter and grad student; I received his ashes and a big grant rejection within a couple of hours.
While experiencing grief and living bereavement, there are some resources that have been invaluable, and I’d like to share them with you. First, strong social support – I am very lucky to have found the best friends I have ever had in my life during grad school both in and outside of my lab. Their support has been invaluable in graduate school, but especially navigating the difficult times and knowing what is normal and what is not.
I also have an advisor who understands grief better than most. I was upfront with him about my dad’s condition and my fears from the beginning of our advisor-advisee relationship, which made a huge difference in my ability to continue in our program. I recommend discussing your life circumstances with your advisors. If they are unwilling to help, hopefully your department will.
Similarly, I found a lot of meaning from our research, as part of Project Heart. It helps me to know that my personal experiences are informing meaningful research questions. My loss makes me a better researcher. If you cope by intellectualizing or want to learn more about the science of grief and bereavement, check out our lab’s website. I also began writing more in this time to help me process all of the complex feelings swirling in my mind. Writing for yourself can be a wonderful experience, but if it starts to feel too lonely there are also resources to write with your friends and family (and even therapist!). For example, AfterTalk helps you manage your grief by writing and sharing the writing experience with close others. Throughout graduate school, I also realized that exercise and moving my body are essential to maintaining my mental health (especially when stressed!). This is my favorite yoga teacher’s YouTube if you’re looking for comforting, at-home practice.
Grief is an isolating experience, but for me, living bereavement was much worse. The guilt that I was never doing enough, either helping my mom with caretaking or spending time with my dad, never went away or got better. Grieving invisible losses for a decade was impossibly draining. I lost the father that would always turn the music up, the father that spent all day playing tennis in the Texas heat, the father who organized protests in Austin, the father who planned special Daddy’s Days, the father who argued and debated politics with me. I lost all of these pieces of him before he died.
Graduate school can be a particularly challenging time as we figure out our research identities, combat imposter syndrome, and adjust the rest of our lives to suit a life in academia. For many reasons, the culture of academia leaves little room for people caregiving for children or older parents, which can further impact our mental health. With high research expectations, often little social support, and stipends that rarely exceed $30,000/year, it’s not a coincidence that the average PhD student often feels isolated. Indeed, graduate students experience anxiety and depressive symptoms at 3x the population average. This is further compounded by the weight of caregiving responsibilities. For most of my life and time in academia, I did not discuss with anyone the strain on my mom as a spousal caregiver, how I also had to provide care, or any of the pain associated with losing my dad.
I lived quietly with anxiety and post-traumatic stress disorder. As an enthusiastic and positive person, no one knew I was struggling unless I told them and even then, people did not understand the intensity of my distress.
This leaves me with two final conclusions: next time you are in the lab, or working with your fellow PhD students, remember – we never know what another person is going through and, especially in times of intense stress like graduate school, we never know how big of an impact a little act of kindness will have in the moment. If you can be anything – be kind.
Ryan Linn Brown is a Ph.D. student at Rice University. Her research focuses on the biological mechanisms through which psychological stress (e.g., bereavement, spousal caregiving) dysregulates the immune, autonomic, and endocrine systems. You can read more about her work here: https://www.ryanlinnbrown.com/