My latest interview was done with Lyle. Lyle is terminally ill he has been diagnosed with the following diseases, terminal pulmonary fibrosis, dermatomyositis, small fiber neuropathy, depression, and anxiety. Please be respectful of him, his journey as you read his interview in essay form.
Learn about terminal pulmonary fibrosis http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/pulmonary-fibrosis/
What is dermatomyositis https://rarediseases.org/rare-diseases/dermatomyositis/
Small fiber neuropathy http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html
Depression and anxiety https://www.adaa.org/understanding-anxiety/depression
My full name is Lyle Sodapop Romans. I am 23 and I have terminal pulmonary fibrosis, dermatomyositis, small fiber neuropathy, depression, and anxiety. I’m dying but it’s ok.
When did life change for you?
My life changed for me when I was in high school from freshman year all the way to the end of senior year, I was extremely athletic. I was also in sports, track and field, I only thought I was getting tired because of the workouts that our coach told us to do. But to my surprise it wasn’t. I went in for a physical check up and my doctor was very confused couldn’t believe the results that were showing I lost 80% of my lungs it’s because of genetics 1/100000000 chance I guess, I won.
Before my life is very different. I actually could sit still I would lift weights as much as I could until my arms gave out, and then the next day I would do exactly the same. I worked for all the strength that I gained also used to love dancing I was a hip-hop breakdancer. Awesome a thespian aka a serious performing arts student.
I had a hard time answering this question seriously because of my terminal diseases, there’s really nothing I can do on my own from getting dressed to eating food. Are used to do many motivational shows but for people who are terminal we continue to get worse over time so in the day I get pushed to my room and I turn my pain into passion by using the talent that I have left I sing, do you motivational speaking online, and just try to stay positive each day.
The most challenging thing because of my diseases is that I lost all independence and now fully depend on others.
For your question yes I find it extremely hard to keep up with others the most I can do now is play with my brother and sister for five minutes and then I have to rest for a few hours.
To others who have the same diagnosis (even though it’s an extremely rare disease) as long as we live Life to the full list each day and every day then there is no regrets. People look at us as inspiration but to be fully transparent we also are just human beings. And that there are happy days and they’re absolutely sad days but as long as you’re truthful it is so much easier to connect with others.
That was an amazing question many people without diseases or terminal problems always think that by looking at us because we look a little different that they should give us sympathy. The thing for me I might have these extremely rare diseases but don’t treat me as if I’m someone that is sick or you should be careful of the words you say. Treat me as you would treat everyone else because I figured out that people with diseases and that are dying it’s natural we are all going to pass away so instead of babying me or taking it easy treat me as a fun loving outgoing person that I was before all of the medical problems are not victims were victorious.
Well my journey I’ve learned that a lot of things that were showing in front of me I took them for granite. I always stop by working out as much as I could and getting a strong as I could what is my purpose on this earth. Seeing this is what’s different though I always wanted to be a famous actor that would be able to make people laugh and enjoy their day but once I’ve learned that there’s no helping me at all and all these tests just go to continue proving I’m dying. It’s OK my life maybe ending but the legacy I have left behind in my motivational’s speaking show, News papers, TV, all of those is what’s going to still be here after I’m gone. So my physical body will be gone but my presence that is around to continue to make people happy will always remain. And that I am so much happier now than I ever was as a bodybuilder. Flush will deteriorate but what remains is what I have done everything I can to help as many people as I can remember to smile, my personality, my spirit, don’t remember a fragile painful person that is dying.
Yes from the journey of life that I’ve been on this was my purpose all along to be an example to show people it doesn’t matter what you’re losing that life is everything around you, you are a miracle. Be happy that if you wake up tomorrow and her breathing and the sun is still up then you still have time. Because tomorrow is never promised so we must enjoy the time that we have left here and once I do die that it’s not goodbye its see you later.
Lyle you are indeed victorious. Thank you for bravely sharing your story, I love the honesty that you have conveyed in your writing. You are an inspiring soul and I am blessed to know you.
You can check out Lyle’s YouTube channel here https://www.youtube.com/channel/UC-G8s3BF7-7tmk_IRTQGTWA