A Different Kind of Strength: Lyle’s Story

Oct 8, 2018 | Patient Blog

“I have one last option to prolong my life and it’s going to shut off my immune system and it will be through infusion.”

At 25, Lyle is a man on a mission. When we first met, he was preparing to take the stage at the Oregon State Fair. He was a finalist in the state’s talent search. As he wheeled his way to center stage that hot Saturday afternoon, no one had any idea.

Growing up, sitting still was not in Lyle’s DNA. He loved being active, especially when it came to lifting weights. It was all he really thought about. Thinking that having muscles was his true self, nothing else mattered.

That is, until his senior year of high school.

“I was only a few days before my nineteenth birthday and I had noticed that I was getting sore much faster and a tight feeling in my chest only thinking it was from my Track and Field practice. But it got worse much faster which led me to get a checkup at my local doctor’s office.” Lyle speaks with a hint of deep reflection as he recalls those early symptoms.

Thinking this was all due from Track and Field, where Lyle did both long and triple jump, he convinced himself that going to the doctor wouldn’t be so bad, until he went.

“I decided at one point getting a checkup would not be so bad until I went. I remember telling the doctor that I was getting tired faster and my chest would hurt at random times. So, my doctor took a listen to my lungs and what she heard she couldn’t believe. That for some reason the bottom of my lungs would not open when I would take deep breaths. So, she decided that I needed to see a pulmonologist.”

Lyle didn’t know this at the time, but he was about to embark on a journey that would eventually land him on a stage at the Oregon’s State Fair to share his story and make people laugh, all the while knowing, time was not a guarantee.

Acting on his doctor’s recommendation, Lyle began to see a team of Pulmonologists, where it would be an excruciatingly long year before a clearer picture began to emerge of what was actually happening with Lyle.

A Twenty-Year-Old Body With 80-Year-Old Lungs

“It took a team of Pulmonologists a year to finally figure out what was happening to me. I went through so many different chest scans. One of the tests they did, they put something from an IV to make my lungs glow. My pulmonologist team still couldn’t figure out why this had happened to a person that was very active and only 20 years old. After a final test, where they did a lung biopsy, it showed them the fibers of my lung tissue that had turned to scarring. I was told by the head pulmonologist I had 80-year-old smoker’s lungs.”

Idiopathic Pulmonary Fibrosis: A Shocking Diagnosis

At 20 years old, Lyle was finally about to get some answers. It had been a long journey walking an unknown path. One minute, it’s your senior year of high school with his whole life ahead of him, and now, a shocking discovery.

“I was sent to OHSU Oregon Health and Science University, which is a state-of-the-art cutting-edge hospital in Portland, Oregon, where I saw a pulmonologist with 40 years of experience. It was then that I was told that I had Idiopathic Pulmonary Fibrosis, which is a terminal disease.”

Lyle pauses for a moment, then continues, “I was told that I will not get better, and instead, I will continue to worsen over time. The doctor told me I was going to die from this disease and that there wasn’t anything that could help me except for pain pills.”

What made the diagnosis so shocking was that this isn’t supposed to happen to people this young. According to the National Heart, Lung, and Blood Institute, Idiopathic Pulmonary Fibrosis is a rare disease where tissue deep in the lungs becomes thick and stiff, or scarred, over time. The formation of scar tissue is called fibrosis. As the lung tissue thickens, the lungs then can’t properly move oxygen into the bloodstream. As a result, the brain and other organs don’t get the oxygen they need.

There is no cure for Idiopathic Pulmonary Fibrosis.

“I am a once in a lifetime case. Because my age and the severity as well as the many other diseases, doctors and professors have wanted to study me literally after I pass. With my lung and muscle disease at 19 and now 25 I am one of the youngest to have this rare disease. Doctors are hoping that might help them make a breakthrough.”

Idiopathic Pulmonary Fibrosis is more prominent in adults over the age of 65, affecting 1 out of 200 people in that age bracket. This translates to more than 200,000 people living with pulmonary fibrosis in the United States today.

Facing Diagnosis: A Different Kind Of Weightlifting

“It broke me inside, figuratively and literally. With Idiopathic Pulmonary Fibrosis, I was then also diagnosed with dermatomyositis, which is a rare form of muscular dystrophy that deteriorates your connective tissues. With these diseases, I ended up in a deep depression where I contemplated if life was even worth living because I had to fight a battle that I am not going to win.

For Lyle, facing his diagnosis was a different kind of weightlifting. But gone now were the plates, the smell of the gym, and the sense of identity that came from those countless days lifting weights. At 20 years old, Lyle was now lifting, what seemed like, the weight of the world.

“I tried to commit suicide because it’s so hard to be a prisoner trapped in your own body and as the diseases progressed so did my energy. I’ve lost the ability to walk to eat and to bathe myself. I am now fully dependent on others to even help me live.”

But as incredibly hard as that was, facing the reality of fighting a battle he could not win and becoming fully dependent on others, there was something even more difficult for Lyle.

“The most difficult part for me is getting up in the morning and trying not to show how I’m feeling with the pain and feeling exhausted. Or watching each day as the things I used to love doing, knowing I will never get the chance to do it again. The people around me know that I always have a smile on my face and try to always have a positive attitude. But, I don’t show them how it feels truly inside, or how hard it is to be positive each day.”

Yet, with all this, Lyle has found purpose and meaning, and a strength no gym could ever provide. Lyle is on a mission of courage and optimism to shine a bright light in a dark world, that is filled with so much sadness.

“I try to overcome it by looking at what I still have and focusing on what I still can do. If I stayed sad all the time, I would never be able to help others feel good who are in a similar situation. I try to inspire everyone I meet because the world already has too much sadness and they need “more-light” to gravitate to, metaphorically speaking, of course.”

Finding Purpose In Laughter

When I had met Lyle, he was about to take the stage as a comedian. No one had known all that he was facing. It had been a long road since those deep dark nights where he would lie awake all night wondering if life was even worth living another day. And yet, here he was, showing a different kind of strength. Perhaps in this, Lyle has found that even more than muscles, something more mattered.

“I actually didn’t realize that myself [a desire to make people laugh] but my foster mom and dad helped me realize that in my journey with this disease. I didn’t really have people to explain it to that fully understood what it’s like to have a terminal disease. So, I decided I’m going to be that person with however long I get to live, I am going to use the air in my lungs to spread positivity and show the humor in my situation.”

Finding this new sense of purpose in his life, Lyle set out to do things he never thought he would ever be able to do. And this meant, even getting up on a stage as a comedian.

“It was on my bucket list to be a comedian I lost my sense of humor for a long time, but once I was able to find it again, I needed to turn pain into laughter and take the awkwardness out of being asked questions that people are scared to ask. My skill is that I’m really good at making people laugh.”

Lyle also spends time, as he likes to say, using his lungs to express his emotions through music on his “Lyle Romans” YouTube channel.

A Final Option

In discussing life back and forth on Facebook Messenger, Lyle mentioned to me that he had one last option that could prolong his life, I asked him what it was. In his own words,

“Because we had tried steroids, oxygen, CPAP, as well as every other option and because my lungs are in end-stage, meaning my body is barely hanging on, I have one last extreme choice to save my lungs. It has to do with an infusion that will turn off my immune system, this would leave no way for my body to attack my lungs. The downside is that any sickness or bacteria that gets inside me would spread like wildfire having absolutely no immune system to fight back. Either way, if I don’t take it my lungs will do its course and I will pass away from it. If I take the infusion, that it will prolong my life, but I can pass away from the flu or anything minor.”

Not wanting to dwell on what the days ahead might bring; Lyle’s mission has become clear. In this, he understands that he won’t be here forever [none of us will]. But to live on purpose, is a life truly living. One might not be able to control the amount of days they’re given, but they can control how they will live them.

Lyle puts it this way about his role now in life, “If I wake up in the morning and I’m able to, I will continue to try to reach everyone I can and teach them we live with these diseases but we cannot let them control us.”

Sitting in a coffee shop as I write this article, I am beyond moved. The song Imagine is now playing and I temporarily fall into a place of deep reflection. Lyle’s very words have been like that of wind in my wings. The irony is not lost. In this, I can only imagine.

In closing, Lyle shared with me some closing thoughts. I’ll just quote them here and let you decide where they shall land. For me, square in the heart. Thank you, Lyle, for sharing your journey with us. You are why we, at Patient Services, Inc., exists.

4 Quotes About Life With Rare Disease

“It’s hard to believe, but no matter what battle you’re going through, there literally is a moment that it will get better. It could get better emotionally, physically, or even spiritually. Find those tiny moments of happiness and hold on to them because that will become your motivation.

“Don’t let anyone tell you that I’m so sorry for you because of what we deal with. See us with courage and bravery, not pity. We are warriors sometimes in an invisible battle that most people have no idea.”

“Our diseases are like bullies in high school…when you give them attention they only get more persistent on teasing you but pay them no mind and they get bored and move on to another person.”

“We are not victims. We are victorious. We fight the toughest battles and still with a smile on our face, we are so much stronger then sometimes we could even imagine.”

 

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