Drew Dotson

loss of partner, Ramón, while living with cystic fibrosis

Hi Drew! Tell us, what’s your story?

My name is Drew, and I live in sweatpants in Atlanta, Georgia. I love writing and am grateful to do it for fun and for a living. After working in several marketing roles over the years, I became a freelance writer in 2017. Now I’m my own boss, which is good because I happen to be quite lenient. I finished writing a memoir last year and am currently working with a literary agent to find a publisher. Eek!

I’m also passionate about improv comedy. I began taking improv classes in 2008, and improv has been a big part of my life ever since. Its focus on mindfulness and letting go of control has transformed my life in the best possible way. Though I retired from performing in 2017, improv still very much a part of my everyday life.

I am the proud mom of three beagles, Noodle, Benny, and Magpie. My heart is so happy when I cuddle up with them on the couch while reading a good book, working on a puzzle, or watching sports — especially the Atlanta Braves.

You shared with me that you have cystic fibrosis. For those who are unfamiliar, can you share what that is and what that means for you and your life?

I have cystic fibrosis, a genetic disease that primarily affects the respiratory and digestive systems. Since my diagnosis at age 2, I started doing respiratory therapy daily and taking pancreatic enzymes when I eat to aid with digestion. For me personally, having CF has mostly been like living with a perpetual cold — a lot of coughing and sinus issues. Top that off with some abdominal pain when my body has difficulty digesting food.

In the 1980s, the median life expectancy for someone with CF was in the upper teens, but a person born with CF today may live closer to 50 years. Promising new therapies have been developed throughout my lifetime, making it hard to predict how the changes will affect each individual’s unique case.

Each day I take several medications, and I currently spend about two hours per day doing respiratory therapy. Exercise also helps my lungs tremendously, so I make it a point to work out nearly every day. When I end up with a lung infection, it typically requires IV antibiotics — sometimes in the hospital, but outpatient if I’m persuasive enough. Additionally, my sinus symptoms led to five sinus surgeries, most recently in March of 2021.

Can you share about the grief that comes with living with a limited life expectancy? How present is that reality in your everyday life?

When I learned of my life expectancy in elementary school, grief became my constant companion. I’d always been a bit of a dreamer, and suddenly that childlike wonder was nowhere to be found. My I-can-do-and-be-anything mindset became one of fear. Whereas life before had been overflowing with possibility and lofty goals, it had become something else — what felt like a temporary experience along the road to an early death.

The heaviness of living with a limited life expectancy was especially prominent for me in my teens and in early adulthood. From ages 8 to 16, I attended a week-long camp for people with CF every summer. As I neared high school graduation, my camp friends began to die right on schedule, which was heartbreaking and terrifying. It left me with a lot of survivor guilt, wondering what was different about me in particular. Plus, as I graduated high school, life became very future oriented — thinking of things like college, career goals, life purpose. The additional pressure of “What do you want to do with your life?” created yet another layer of urgency. Those coming-of-age-years are difficult in general, but the deaths of my peers intensified that for me

As I continued to age, my grief took different shapes. I worked full time for quite a while, but I struggled to stay healthy during those years. I grieved when I had to accept that full-time work just wasn’t cooperating with my body. Additionally, as my health began to decline, I grieved the loss of certain abilities. While grief might not have been a part of every single day, it was exceptionally present on challenging physical health days. And, deep down, the grief was always there.

With the help of counseling, improv, and meeting Ramón, my fears began to retreat. As I harnessed my ability to live in the present moment, I found myself dealing with much less day-to-day grief. I began experiencing more joy than ever before, and my mind spent significantly less time living in the future.

Today grief over my illness is quite rare and, again, mostly emerges during times of poor health. Ramón’s death reminded me that life is unpredictable, and it also helped me discover a newfound level of gratitude. I decided I was tired of grieving things that may or may not happen and instead tried to be as “here” as possible. I continue to improve my perspective through mindfulness and meditation.

How do you live fully without the constant anxiety of death?

For me, the key is mindfulness — it’s taking in the beauty that surrounds me in the present moment. When I spent so much time worrying about what was coming, I sacrificed all of the present moments I was living. Over time, I realized I’d been sabotaging myself by spending so much time mentally living in the future.

My journey to mindfulness really began with one small step — signing up to take an improv class. I didn’t know it at the time I registered, but success at improv requires living in the present moment. When you’re on stage, building a story with your scene partner, you simply can’t live in the past or in the future. And I don’t simply mean that you shouldn’t be on stage thinking about what happened at work yesterday or what you’re going to wear tomorrow. It runs even deeper than that. You can’t afford to dwell on what you wished you’d said two lines ago or hoping your partner responds a certain way. Instead, you have to erase expectations and just be in the now. This helped me tremendously in every aspect of my life, but particularly in terms of chronic illness and grief.

As a bonus, I have improv to thank for merging my path with Ramón’s. He was in the audience one night when I was performing, and he was so smitten (he’d roll his eyes at that!) that he friended me online.

Any words of wisdom you would give to others in a similar situation?

It sucks to feel as though you have no control over the thing that is supposed to be yours — your body. That unpredictability makes it easy to live life from a place of fear, always bracing for what will happen next. However, by obsessing so much about the future and my eventual health declined, I missed the joy I could have been having in that life moment. By trying to control the future, I lost the control I did have — the control over I want to do NOW.

Though you won’t see immediate change, counseling is a wonderful way to work through these emotions with a person who’s unbiased — a person you can talk to openly and honestly without worrying about how your feelings will affect them. I also benefit from journaling every morning and spending more time in nature — taking in what is.

Probably my top recommendation is to pursue passions and interests beyond your illness. Though finding a community is great, at times it can become all consuming. When I’ve become too entrenched in the CF community, I started labeling myself as a person with CF above all. In reality, I am much more than that, and it’s important to maintain that perspective. I’m a writer, a dog mom, and an improv guru, among many other things. Though illness can easily feel like your entire identity at times, it’s not. You are so much more.

Oftentimes when we are faced with our own mortality, we create a bucket list of items we hope to accomplish in whatever time we have left on this planet. Do you have a list? If so, what are some of the items on it?

The one must-do item that has accompanied me throughout every stage of life has been to write a book. The good news is that the book is written! It’s a memoir about how fearing death kept me from living life. I’m excited to see that dream come to fruition!

Now, as far as bucket lists go…

I’m on the verge of sounding a little out there, but I don’t have a bucket list because my ultimate goal is just to enjoy each day — each “now” that I’m fortunate to see. I got a goal-setting planner at the beginning of 2022, and there was a page titled “My Dreams” that was numbered from 1 to 50. Looking at it now, some of the items are tangible, like visit Bora Bora, but others are smaller — even abstract at times — like have a fairytale garden and nap on a cloud.

When you were 25, you met your spouse, Ramón. Did he know you had cystic fibrosis when you met and if not, how did you share that with him? How did you handle that as a couple? I’d imagine those early conversations are different than those of many others your age.

Ramón and I never had a dedicated sit-down talk to discuss the fact that I had cystic fibrosis. Given my openness on social media, especially driven by fundraising, it didn’t take much hunting for him to learn it on his own. Before social media, I struggled with telling people about CF. I wanted them to be able to somehow acquire the information without me saying it. It wasn’t that I was ashamed of it, but I preferred to avoid the responses — “I’m so sorry” or the “Is that, like, a lung thing?” Plus, I appreciate that social media enables people to see the CF is just another part of my life, just like the fact that I have dogs and a passion for eating candy.

What I do remember is that Ramón did not seem deterred by or afraid of me having CF. At the start of our relationship, we messaged a lot online. Searching through those, I found this message from me to him, about two weeks after we met:

One thing I keep thinking about from last night was how you mentioned a sort of sense of urgency, primarily as it relates to my having CF. I don't like that you feel that way, but I understand why you do. I want you to believe that I will be here as long as you. I believe in my heart that I will not die from CF.

In looking back at that message, I definitely fulfilled the part about being here as long as Ramón. And I’m working (as is the CF Foundation!) on the second part.

A few years into your marriage, Ramón was diagnosed with acute myeloid leukemia. Can you share about his diagnosis?

Ramón’s diagnosis came as a total surprise. He’d gone for a routine physical and had bloodwork done, and the next day the doctor called and said to get to an emergency room. It came as such a shock — plus this happened on his 40th birthday — that we didn’t have much time to think. Ramón was immediately hospitalized and remained in the hospital for nearly a month. When we had time to reflect, we mostly remarked on how insane it was that we were in this position. There we were, him getting chemotherapy while I sat next to him doing respiratory therapy. Hospital staff walked in, confused as to which one of us was the patient. We got a kick out of that.

So many people have no idea how to support a spouse with a terminal diagnosis (especially at a young age). Do you think your experience with grief and illness helped prepare you at all?

In many ways, I’d been preparing my entire life. In grieving my own eventual death — and grieving the deaths of my peers with CF — I felt like an expert. I remember walking around on the hospital sidewalk, talking on the phone, telling a friend, “I am the absolute best person to handle this.” Not only did I know the anxiety and grief associated with a terminal diagnosis, but I was also amazing at navigating health insurance (not by choice) and had plenty of experience with the hospital routine.

After spending the majority of your life worried about your own mortality, you then had to face losing the man you loved. Can you talk a little about what it was like to lose Ramón?

Losing Ramón was complex because it was instantaneous and long-lasting at the same time. He received a bone marrow transplant and came down with an infection that went undiagnosed. Ultimately that infection caused him to suffer a cardiac arrest in the hospital nine days after what we hoped would be a life-saving transplant. As they worked to revive him, Ramón had gone without oxygen. We learned several days later that he’d suffered a brain injury, but the extent of the injury wouldn’t be known until he woke up further. And, though he made incremental progress, he never actually regained full consciousness. Ramón spoke his last words prior to the cardiac arrest, then died three months later.

My grief was extremely complicated. At first there was the grief from the fact that he’d suffered a brain injury and would never be exactly the way he used to be. Then, about three weeks after his cardiac arrest, a different neurologist evaluated him and gave a vastly different prognosis — that he would need 24/7 care for the rest of his life. That thrust me into my next stage of grief, where I started thinking about what this would mean and how it would completely change our lives. However, other neurologists gifted me with hope, saying it was “too early to tell,” so my emotions were all over the place, but they were all tied to some form of grief. One thing was clear — life as we knew it was over.

The morning Ramón died he suffered a medical complication that resulted in another cardiac arrest. Though I’d been grieving for three months, the inciting incident came out of nowhere, so it still felt unexpected. There was finally an end to all of the uncertainty, but it also meant there was an end to the hope.

I recall walking out of the hospital that morning dumbfounded — the same location where I’d been hospitalized many times. All the statistics would have suggested that Ramón would one day be the person exiting the hospital without me, but that wasn’t the case. The elementary school version of me — the dreamer whose fire dwindled after reading the life expectancy — never in a million years could have imagined being in this situation. It was so surreal.

What was a specific low point or struggle you experienced after Ramón’s death?

My lowest moments happened between Ramón’s cardiac arrest and his actual death — the period of time where he was unable to communicate, and there was no telling which way things would go. At times, the uncertainty was crushing. Despite knowing we were in a holding pattern, I desperately wanted clarity. It would hit me hardest when I woke up, whether in the middle of the night or in the morning. The facts would hit me all over again, and I was constantly trying to climb out of that dark place. Each time I replayed how we got here, I felt equally heartbroken and helpless, wishing I could do something — anything — to help the man I loved.

How did you manage to find joy in those low moments?

When I was with Ramón in the hospital, I often found joy by caring for him. I’d play some of this favorite music and do range of motion exercises with him. I tried to keep his joints as mobile as possible and found joy in knowing that I was doing a tangible thing that could benefit Ramón. Other times I’d channel my love into wiping him down, slathering lotion on him, or even giving him little massages. I had no idea whether he was aware, but there was a certain calmness about it. I would also find ways to cuddle with him while playing healing meditations, hoping they would contribute to his peace. When I focused on exactly what I was doing, helping Ramón, I often felt joyful.

What do you want others to know about grief?

To put it bluntly, grief is a real a-hole with a mind of its own. There is no right or wrong way to grieve, yet sometimes it inexplicably feels like you’re doing an awful job at it. When you feel sad, you question whether you should be further along. When you feel happy, it’s often accompanied by feelings of guilt. Grief is a real beast and, the more you try to domesticate it, the more unwieldy it becomes. It’s best to lean in and feel however you feel without judging it as right or wrong. Just allow it to be. As has been said for centuries, “What we resist persists,” and I think that’s especially true for grief. Make space for it so you can learn to coexist with it.

How can a person best be there to support a loved one who is grieving (either from the loss of a loved one or from their own illness)?

Don’t be afraid to talk about it. Don’t make assumptions about how other people feel. It’s perfectly fine to have normal conversations. Say something, even if it’s, “I’ve been struggling with what to say, but please know you’ve been on my mind.”

If you could go back and spend one more day with Ramón, what would you do?

If I could spend another day with Ramón, we’d wake up in a cabin in the Blue Ridge mountains of North Georgia. In bed, we’d be surrounded by the dogs and enjoy a morning cuddle fest before we left the clouds — our nickname for the bed. Then we’d get up, feed the dogs, and take them on a small hike up a mountain. Next I’d make us coffee and, if we were feeling adventurous and the weather was right, we’d enjoy our caffeine in the comfort of the hot tub. We’d talk and laugh and cut up, as we always did.

After that, we’d rinse off and get ready for the day — our “getting ready” meaning very casual clothing. While I did my respiratory therapy, we’d played a game of Scrabble or several rounds of Yahtzee. I would win. Then we’d head into one of the cute downtown areas and wander in and out of shops, cracking each other up with our random shenanigans. We’d pick a cute place to sit down for some lunch and some daytime beers. We’d people watch and inevitably talk about how much we missed the dogs we’d only been away from for a few hours. The conversation would evolve into something weird, like what each dog would buy if they could spend $50 at the grocery store.

Both feeling satisfied and a little beer-tired, we’d head back to the cabin. We’d sit outside on the porch while the dogs, too, enjoyed the great outdoors. When we were ready to come inside, we’d settle in with the dogs, me on the couch, Ramón in the chair. Ramón would put on The Office while I worked on a puzzle on my phone, and we’d both doze off at some point.

For dinner we’d enjoy something simple, like pasta. Then Ramón would eat something sweet because, as he often said, “No meal is complete without dessert.” We’d spend the rest of the evening playing more games — maybe two-person poker — and would likely turn the TV to something sports or cooking-related to finish off the night. I’d look over and Ramón would be asleep with his mouth open, so I’d start rallying the dogs for their pre-bed trip outside. We’d do our nighttime routine, then meet in the clouds, surrounded by three warm dog bodies. After we kissed goodnight, I’d press play on a guided meditation and would hear Ramón fall asleep instantly. My heart would be happy as I dozed off, too.

Any resources that were helpful for you that others might be able to utilize?

The day Ramón died, a recently widowed friend stopped by with the book Permission to Mourn by Tom Zuba. I’ve read it many times since and have recommended it to others facing great loss. It was a quite easy read and had many gems that I still think of to this day.

What brings you joy now?

I have a lot of joy in my life! I love all the little reminders of Ramón, whether it’s because I pass nostalgic places, hear certain songs, or see photo memories. The dogs are a constant source of joy, and I know Ramón would be so pleased to see them living their best lives — especially Magpie, our dog who’s more than 16 years old. I experience the world a bit differently now, as though my senses have heightened. I enjoy being in nature watching the sun rise or set, listening to wind rustling the leaves or birds chirping, and observing the ever-changing clouds in the sky. My commitment to gratitude has made all the difference.

Want to learn more about Drew and her story? Check out her website www.drewdotson.com and her IG account, @drewdled and Twitter account, @drewdotson.