I’m Still Not Comfortable Being an Inspiration to Others
Columnist Charlene Marshall dissects the idea of being called inspirational because of IPF
As a child in elementary school, I once earned the top grade on a project about inspirational people in Canada. I was fascinated by what made them inspirational to others, whether it was a marathon for cancer research by the late Terry Fox or a wheelchair race for disability awareness by Rick Hansen. I couldn’t get enough of their stories, so it was an easy project to finish, and my passion for researching people like them paid off when the teacher graded my work.
I participated in many leadership activities throughout elementary and secondary school, striving to discover what energized me most. I loved to fundraise for various causes or events dear to my heart, and my mom recently shared with me that she thought I’d be a professional fundraiser someday.
Growing up, I had many passion projects, and I often daydreamed about how to turn them into something inspirational like the people in my research project. I wanted to do something sensational and grand that would inspire others. Battling a chronic illness was not in that plan, and I certainly never imagined I’d one day be called inspirational because of it.
I was diagnosed in 2016 with idiopathic pulmonary fibrosis (IPF), a debilitating and progressive lung disease that eventually steals one’s ability to breathe. I was fearful of many things after doctors told me I had IPF — mostly that I wouldn’t be able to travel — but it was never an option to stop doing what I loved. I was determined to live with this disease, even if it meant lugging around supplemental oxygen as a young adult.
Despite having IPF for six years and getting progressively worse, especially since having COVID-19, I’ve managed to continue doing many of the things I love. Shortly after my diagnosis, I went Jet Skiing in the ocean with a small oxygen cylinder on my back, and a few years after that, I went snowmobiling with a friend in the Whistler and Blackcomb mountains in British Columbia. I have also traveled to Hawaii and hiked in the rainforest, and developed a love for kayaking near home in the summer and autumn months.
While there are still many things I can do with IPF and supplemental oxygen, there are others I can’t. I miss playing hockey, swimming competitively, and running, all of which involve too much cardio for my heart and lungs to manage anymore.
How others see me
I recently shared with an acquaintance a list of things I’ve done since my diagnosis, and I initially couldn’t gauge her reaction. I wondered if perhaps she thought I was a risk-taker or that my decisions were unsafe. It turns out she was reflecting on what it would be like to do all of these activities while on oxygen. She called me inspirational.
I don’t know how to feel when someone calls me inspirational for living with IPF. Being unable to breathe is challenging, as is lugging around oxygen. But I don’t see it as inspirational. I see it as the only choice I have to live a life I enjoy. The alternative is to sit with all of the negative emotions I feel about having such a cruel illness — anger, fear, resentment.
I awkwardly tried to shrug off being called inspirational as if having IPF weren’t a big deal. But the person I was talking to gently challenged my thinking and reminded me that being inspirational to someone else is a subjective experience, and that she can’t imagine how difficult it is for me to function with such poor lungs. At that moment, I stopped trying to bury the comment and simply thanked her for her kind words.
Reflecting on the conversation now, I still don’t see myself as inspirational, especially compared with the people I researched for my school project. I suppose after all these years, my desire to inspire others has come true, but in the most unusual way. I am grateful for conversations like these, as they force me to reflect on some of the positive things that have emerged as a result of living with IPF — even if I don’t know how to feel about them in the moment.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Rick Clark
😃✌️♥️
Jenny Fransen
Your story inspires me to try to live more fully. I think this is the true meaning of being inspirational.
Jim Couch
Good article - Never go whimpering into the dark. I hope to enter heaven on Gods terms but will meet death on mine.
Barbara
I would love to travel but no airline will let me with my oxygen tanks. I can’t use portable because I need continuous flow.
I feel my husband is missing out on so much since I have this terrible disease.
darlene cochran
Hi Charlene,
I get how you feel about the label inspirational; it is humbling and a bit embarrassing to me. However, I have come to view it as doing the work the Lord has given me. If there is to be a blessing in having IPF, then it needs to be the opportunity to help others. Doing that helps me so much, as I have to accept what is happening in my lungs. So, when I share or try to inspire others to make choices to keep joy and love in their lives, it is with the knowledge that my choices are not just for me. My reason for being a volunteer is to say thank you to the Lord for all the blessings that have come me and my family. So, giving me an opportunity through volunteering at the PFF is the path chosen for me. When I think of the pleasure that comes to me when I am inspired by others, I realize what a gift they are giving me. When you inspire others Charlene you are giving the gift of hope and love to those you inspire. It is a huge gift and one that we receive with open hearts. You can feel strong and loved by this inspiration you bring to others. As you inspire others, they too can then become inspirational people. That is playing it forward in the best way. Breathe easy, Darlene Cochran
Julia A Johnson
My first thought was how interesting one of the definitions of inspire is this: "they can expand their lungs and inspire enough gas to satisfy oxygen requirements". I think you fit the very definition perfectly!
Anita Clos
Yes! I get it a thousand percent. I am six years post double lung Txp and I've done well. No issues even with Covid. And it scares me to death sometimes. Is there something dreadful waiting for me? Each time someone marvels at 'how good I look,' I wonder if they're marveling that I'm still alive. And I struggle between thanking them and wanting to just pass it off as the miracle it is--wondering if I'm jinxing myself by acknowledging that I've done remarkably well. It's a no-win situation because so much luck/grace is involved. It's God's hand, I say; I only try to survive and live my best life possible. Living a miracle is...wonderful and worrisome all at the same time. Thank you for identifying this very peculiar dichotomy.
Steve Dragoo
Friend,
We are hard-wired to be positive and effective and proactive on this darkened planet. You can only be what you are to be. Discover deeply and live it richly - that is a blessing... Steve
Anita L Fabre
Thank you for sharing the ups and downs of Idiopathic Pulmonary Fibrosis Charlene. My husband and I learned by reading all the articles that would get posted. Yes, you are an inspiration, keep up your great work. Like you, my husband learned to live with it and make the best of his situation. He was diagnosed in 2014 at the age of 59. From there we bought an RV and traveled for the next 4 years. He adapted that RV so he could easily hook up to oxygen without dragging long hoses everywhere. We took oxygen everywhere we went. Inconvenient, yes but it didn't stop him. He adapted the RV to run his machine using a generator while he drove. Then he used a large backpack to carry his oxygen tanks so he could be a tourist and see the wonders of our beautiful land as well as attend all the family events we were invited too. Sadly he lost his battle in 2018. It is an ugly disease, but attitude has so much to do with how you deal with it and how your family handles it. He may have been uncomfortable, but was never a complainer. His positive attitude helped our whole family including kids and grandkids to have many wonderful memories of our last years with him. He kept his humor through it all including taking his hose and covering it with different colored tapes to make it look like a snake that he told his grandkids, grandnieces and grandnephews was his pet, even giving it a name. They still talk about it. My heart and prayers go out to all patients and families dealing with this horrific disease. It's not easy, but life is what you make it! Miss you Russ Fabre'
Judith g Strauss
You truly are an inspiration!
conni borwick
I appreciate all you write . I am wondering how you could hike even with portable or are
They tanks? Sitting on oz I can keep levels at 2 1/2 but the minute I start moving especially anything involving upper body my stats plummet.. from 93 to 73? I miss training my dogs but seems like my inogen portable can’t give me enough oz. also curious if you still are looking to do a transplant.
You are an inspiration and my heart breaks that you are so young to have this awful disease.
Conni borwick
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Jeannine Franco
You definitely inspire me! Thank you for the effort you put into this forum. God bless and keep you healthy.
Paul Polidano
Oops- this is a rewrite of what I started but didn’t finish, as it seems that I accidentally posted my message prematurely.
Hi Charlene
Having been an avid reader of your blogs since being myself diagnosed with IPF in January 2020 and starting to subscribe to PF News ‘on-line’ shortly thereafter, let me tell you that in my view, you sure are an inspirational leader in our fight against this rotten lung disease we've been lumbered with. So much so that I, not only was so inspired by reading what you accomplished by using the small oxygen cylinder etc., (since I also expect to have to use oxygen sometime in the future and don’t wish to give up my favourite hobbies -such as fishing and out working in my garden etc.,) but also, being the host of an ‘on-line’ IPF/PF peer support Group here (down-under) as supported by the LFoA (Lung Foundation of Australia), I have on a number of occasions, not only made reference to several of your past blogs in chatting to our Group, but also forwarded them the link to join the PF News -so that they also can read and see, not only what you write in your blogs, but also for them to read the enthusiastic replies which you elicit from them.
Keep up the good work of inspiring us all and I hope that life doesn’t get any harder for you.
Regards PaulP -Melb/Aust.