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4 Life Lessons From An Immunologist Who Faced An Incurable Disease

Posted on April 03 2020

Most people don't expect to endure a near-death experience, let alone four. But immunologist David Fajgenbaum, M.D., MBA, M.Sc., FCPP, takes the latter, as he battles idiopathic multicentric Castleman disease (iMCD)—a rare disorder where the immune system attacks and shuts down the body's vital organs—and even had his last rites read to him in 2010. Since then, he's had four nearly fatal iMCD relapses. 

Despite these grave conditions, Fajgenbaum was determined to survive: "I knew that there was no way I would make it to my wedding day unless I found a drug that could keep me alive," he tells me on this episode of the mindbodygreen podcast. 

In addition to discovering a treatment for his disease in his third year of medical school (after conducting a series of experiments on his own blood samples), he identified a few other mental shifts he needed to take in order to survive. Here are four lessons he's learned while facing this incurable disease—while Castleman disease may be rare, Fajgenbaum's tips for resilience are universal.

1. Take it day by day—sometimes literally. 

One of the main reasons Fajgenbaum was able to survive is because he didn't know how long his healing journey would ultimately be. While he battled this illness time and time again for many months, he didn't exactly know which time—or day—could be his last. That said, he was able to sustain enough energy to fight the disease, day by day. 

"If someone had told me what I was going to endure, I don't know if I would have had the mental strength to fight for that day," he shares with me. "But because I literally was just fighting for that day and I didn't know what was in my future, I could do that." 

In this case, not knowing what was in store for him made him stronger—it allowed him to focus on the day at hand rather than the long road he would ultimately have to take. 

"I know it's a cliché, but because I literally was just fighting for that day and I didn't know what was in my future, I could do that," he adds. "I can fight today, I'm going to fight to breathe, I'm going to fight to survive today—that was kind of how it was early on."

2. The time is now. 

Something else Fajgenbaum has learned from fighting every single day to survive was to stop waiting for "the right moment." Fajgenbaum tells me that right before he became sick, he and his girlfriend of over two years had just broken up. 

"One of the reasons we felt OK breaking up was that we were 25 years old and thought we had all the time in the world. We thought that if it was meant to be, it would work out. And then there I was, just a few months later, dying," he says. 

Needless to say, Fajgenbaum doesn't wait for the "right moment" any longer. He and his girlfriend (now, his wife) got back together, got married, and started a family: "We have a daughter—she's 18 months old, and we never thought that we would be able to see this day."

So whatever you're delaying in life, whether it's a relationship, travel plans, or career shift, take Fajgenbaum's advice and stop waiting for the perfect moment. While it can be scary to trust your instincts and take a leap of faith, it will be worth it.

3. Find some humor.

While it can be difficult to find positivity in particularly bleak moments, it's important for our mental health and strength to look for light moments in the midst of hardship. 

Take Fajgenbaum, for example: When his chemotherapy treatment finally kicked in (after about five months of being in and out of critical condition), he was finally well enough to stand up and go for a walk with his dad on New Year's Eve. They passed a man who had been drinking and said to them, "Good luck to you and your wife." 

"I looked at my bloated belly, and I realized he thought I was my dad's pregnant wife," Fajgenbaum shares. "We just burst into laughter. You would think that would be a low point, but actually it was a high point—I was finally well enough to walk and be confused as a pregnant woman." 

For Fajgenbaum, it was a light moment; he was just happy to be alive and out of critical condition. "It signaled this change in mentality where I was no longer this dying patient," he continues. "I was still a very sick person, but I was ready to try to find some positivity in the midst of a really tough time."

4. Cultivate an athletic mindset.

Before he was sick, Fajgenbaum played football at Georgetown University. He had an athletic build as a young, thriving college athlete, but he also had an athletic mindset. Both of these attributes, he says, helped him in the throes of his illness.  

He says that quite literally having all the muscle mass he had as a football player helped keep him alive when he became sick, and he lost about 70 pounds. And while the physical exercise helped keep him strong in the face of illness, it's the emotional connection to sports that also had profound benefits. 

"I remember from my days playing college sports the challenges that my coach put me through," he says, mentioning how he routinely had to go lie on the football field in the middle of winter whenever a teammate was late for a morning workout. "That's the kind of thing that prepares you in some ways for being in the ICU, dying, and the pain that you go through from fluid accumulation." 

While the challenges from Castleman's disease turned out to be much, much harder, his athleticism helped him strengthen his mind (and body) to weather that sort of obstacle. The resilience he had amassed from playing sports helped him apply that mindset to other challenges in his life—especially the one that almost cost him his life. 

While we hope that you never have to face a challenge like Fajgenbaum's, take his four lessons into consideration whenever you're experiencing life's troubles. Whether it's a health complication or emotionally taxing hardship, sometimes life throws obstacles your way; with Fajgenbaum's tips, you have the power and resilience to face them with dignity.

By Jason Wachob 

mbg Founder and Co-CEO