Not Being Prepared to Outlive Your Loved Ones

Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me. 

| 7 min read
Richard Caldwell
Richard Caldwell
Richard smiling with a waterfall in the background.

I remember being with my mother in San Antonio. We were talking with my sister, who was calling from Washington state. She was on speaker phone. Suddenly, there was silence on the call. Then my sister said — matter-of-factly — words I’d never thought I’d hear: “Honestly Rich, we all expected you to die first.” There was more silence, then I replied, “So did I.”

That conversation took place in February 2019. My older brother, George, 32, had just passed away from a bacterial infection in his heart that spread to every part of his body. The infection was sudden and without warning. We had no time to process what was happening or say goodbye to George before he lost his ability to speak coherently. His last words to me were, “Rich, I want to go dancing.” He was 6’2”, 200 pounds, and had two left feet. This man didn’t dance.  

George loved cars, paintball, shooting, and pasta. He had the brightest blue eyes I’ve ever seen. To see my indestructible, towering, handsome big brother diminish to nothing — his eyes no longer bright but dim, unfocused, and lost — it was all I could do to keep from howling in pain and crumbling in a heap. But I couldn’t do that. Others were in the room, including our mother. I had to be strong. 

Two years had passed since my brother’s death when, on May 31, 2021, my mother passed away from many health complications at age 67. Her death, like George's, was quick and unexpected. Also, like George, we didn’t really get a chance to speak to her. We were forced to make life-altering decisions to ease her suffering and lay her to rest barely two days after she was hospitalized. Our mother — the formidable and inspiring strength that birthed us and raised us to become capable and successful adults — was just … gone.  

This time, I succumbed. Alone with my mother, I collapsed onto the floor and wept — pure and raw pain flowing from my face. Years and years of pent-up anguish over my father’s death 12 years prior, my brother’s death, and now the loss of my mother was let loose in that room. I must have sounded like a dying animal to the staff outside. I laid there for 10-15 minutes, crying and moaning until my throat was hoarse. 

It was after her death that I began to really panic and have anxiety about my own mortality. I know I’m going to die — duh — but it was seeing those three pillars in my life die before me that got me to focus on myself. As I was writing this post, I realized that it was easier to prepare for death when I didn’t have to feel the loss of my loved ones. They would have to deal with my death, but I wouldn’t have to deal with theirs. With a chronic, progressive disease like CF, I had been expecting to die. Everyone planned and anticipated it.

After these unforeseen deaths in my family, I suddenly found myself unprepared not only to live without them, but for this idea I’d be outliving them.

I was diagnosed with cystic fibrosis when I was 8 years old. No one in my family knew what to make of my short stature, failure to gain weight, asthma, and gastro issues. Thankfully, an endocrinologist took one look at me and said, “He has cystic fibrosis.” From the moment it was confirmed, my entire life changed. No one can prepare you for the onslaught of information and medications that come your way. I felt I was drowning in words that I couldn't understand, being buried alive by medications, and being bled dry from all the blood draws. In the midst of that, my doctor’s words offered the major takeaway: “You may not live past 30.” That statement defined my life.

I am 34. Thanks to the miracle of Trikafta®, I have surpassed the expectations of everyone, including myself. My overall health and lung function are better than they’ve been in years. I ran a 5K in June! At one point, that seemed impossible. Trikafta has truly given me a new life and a second chance. 

However, that doesn’t change the fact that I’ve had this voice inside me that says, “Don't bother. You’re going to die soon anyway.” This core belief made me feel like I shouldn’t challenge myself or aspire for a fulfilling life. Instead, I have laughed and smiled my way through life, pretending its fleeting existence doesn’t weigh on me.   

I have been mostly content. There have been times where I worked hard and succeeded. Yet there were still those withering thoughts in my head: “What is the point? To what end is this job you have — to make money? To buy a home? Have a family? Why seek companionship? You’re going to die soon. Do you really want to leave your children fatherless, their mother widowed? Why bother?” These thoughts were an ever-present, invisible leaden weight I dragged around everywhere I went. 

I felt my entire life that there was one mission: Keep Richard alive. My parents sacrificed so much to make sure I stayed that course, even with the expectation that I would not live long. They were extremely hard on me, stressing that I keep myself healthy because they wanted to see me grow up — and I have. Mission accomplished.

But what about after? What is the next mission? The CF progression has slowed to a crawl, maybe even halted. My parents died before I could ask them, “OK, I have survived. I am thriving. What next?”
   
With only my sisters and me remaining, a thought occurred to me: If my family name is to continue, it has to be through me. I cannot bear children without medical assistance. It's expensive and time consuming. With the constant reminder of not having enough time, is it something I want to invest in? I don’t know.  

My partner, Cheyenne, has also expressed the desire for a family and reminded me that taking on that mission when my health is already a challenge is a scary prospect. I may become too sick to take care of my children. Am I ready for that? What is the cost? These would have been great questions for my parents, however, that is not an option. I am learning that only I can answer those questions. 

Even though my life is uncertain, having a partner whose love and support inspires me to keep going, accept new challenges, and explore new opportunities (like the 5K!) is invaluable in this world of perpetual questions.

For the first time in years, I feel confident that I know what is next. I am looking forward to carrying on the legacy of my family and starting my own. With the possibility of 30-plus more years, I get excited. It's within my grasp, and I am reaching for it. I still whisper to myself, “Why bother?” but there is now a louder, optimistic voice saying, “What is next? Whatever I want. Why? Because I can.” 

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Aging with CF | Emotional Wellness
Richard Caldwell

Richard was diagnosed at 8 years old with cystic fibrosis after his parents noticed his failure to thrive, asthma-like coughing and wheezing, and gastrointestinal issues, and took him to an endocrinologist . Richard grew up in the Pacific Northwest, the perfect climate for his lungs — cool and salty. He is a full-time laboratory professional at a major hospital system and volunteers at his church and with a children’s grief camp. Richard recently completed a training program at Johns Hopkins and hopes to pursue a career in genetics. He just completed his first 5K run in June. He lives in Tacoma, Wash., with his partner, Cheyenne, who would describe him as a “theatrical nerd” who enjoys writing, theater, Dungeons and Dragons, and improv. You can connect with him on Facebook

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