I’m not on a Pulmonary Fibrosis journey…

This is in no way a judgement or commentary on people who are Battling health issues, on their individual treatment journeys or in their Fighting Era. We, in America as a collective, are now so sick that I feel like my feed is full of friends and loved ones who are all dealing with their own particular brand of health scare, terrifying diagnosis or medical mystery. Families’ lives are turned upside down as they’re thrown into the role of Caretaker for aging relatives or ailing loved ones.

I don’t deserve this. So many have expressed their disappointment that I am going to die young, while others (often themselves) have lived a life of regret and questionable morals just to reach a ripe old age. I would contend that objectively, no one “deserves” to die young but I’m also here to tell you that I am LIVING. On strong days or hard days, I am living as much of my life as I am able. I am writing letters, making art, reading books, planning travel, connecting with friends, cooking meals… sure, I’m also going to doctor appointments, therapy, scans, infusions and lung function tests but that’s just my life now. I am not mourning another version. I am not sad, so please do not be sad on my behalf. If you know me you know that all I’d ever want you to be is HAPPY because of me.

I read an excellent article by a Hospice Nurse that essentially said, when I die please put the WHY in the beginning of my obituary so people don’t spend the whole time wondering what happened and she said PLEASE do not say that I lost my battle with anything. With my newfound perspective, these are both entirely relatable. But I offer this:

I am living (and dying) with Lung Disease. As we learn more (shout out to the Second Opinion team of doctors!) it has become clear that Systemic Scleroderma is the root of my issues and it is manifesting as Pulmonary Fibrosis. But I do not wake up in the morning ready to battle. I wake up and might have to negotiate with myself about how much oxygen I need to stand up or which medicines should be taken in which order based on my levels of nausea, congestion, inflammation, coughing, bronchiectasis and wheezing.

FIGHTING, to me, implies violence, over-the-top emotions and struggle. My primary emotion is serenity. I feel far too peaceful to be thinking of battle and based on my wobbled-walk I am definitely not on a Journey. I applaud those who see that they are in the process of metamorphosis. THAT to me is a Journey – learning about yourself and recognizing boundaries, honest communication and personal growth. I am proud of who I have become, the peace that I have found and the unnecessary distractions that I have managed to shed. That is a result of my diagnosis, but I’m not giving the diagnosis the credit.

I like using the hashtag #LungWarrior because Pulmonary Fibrosis is not a well-known or understood disease. Folks might be more familiar with people in wheelchairs or scooters in public but Supplemental Oxygen machines or tanks are not frequently seen. I hope to use my years of Edu-Tainment experience as an opportunity to help people understand the equipment, its functionality and its limitations. I will also advocate against vaping, smoking and for immunizations. If I am able to impact even one person as the catalyst for their healthier life choices, than I’ll consider this experience a success.

In my serenity, regrets have fallen away. Grateful is my primary emotion: for the time I have remaining, the people my illness has brought back into my life, and the experiences I have prioritized.

I don’t know anyone who would argue that life is fair, but I am not begrudging fate. Let us celebrate together the time I have remaining!