Why I Made a Photo Journal of My Journey With IPF

From simple selfies to shots of sedation, a project aims to ease sadness, show truth

Samuel Kirton avatar

by Samuel Kirton |

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During the early days of my diagnosis, I didn’t want people to be sad. Yes, my diagnosis was not a cause for celebration, but sadness was not going to change it. If I could be positive, especially in my view of the future, I might help others be less sad.

It turns out that photos helped me do this.

But how?

Around 11:30 a.m. on Jan. 31, 2017, I was diagnosed with idiopathic pulmonary fibrosis (IPF). After we left the clinic, the rest of that day was a bit of a blur.

I’ve written in previous columns about some of the emotions my wife, Susan, and I experienced following my diagnosis. We quickly realized we needed to tell people what was going on to explain some of the changes they’d soon observe.

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At this point, we both continued to work and planned to continue for as long as possible. As the clinic began to set appointments even during that first week, Susan and I were blocking time on our schedules to ensure we could attend the appointments together.

That first week, specifically the Sunday following my diagnosis, I also told my kids.

From that discussion came a solution: If people in our lives could see that I was doing OK regardless of my diagnosis, they might be less sad. My daughter said she wanted pictures of me, and I knew that had the potential to let people see this journey.

A photo a day

Initially, this project — a virtual photo album titled “Selfie-a-Day” — was intended to be just for our family. Admittedly, this title was a bit too ambitious and quickly changed to “Selfie Almost Every Day.”

This photo is angled upward to capture the face of a man with gray hair, mustache, and beard. He's wearing sunglasses and a red jacket with a light shirt and is strapped into a seat belt in a car.

One of the early photos in Sam’s “Selfie-a-Day” album — or as it became, the “Selfie Almost Every Day” album. (Photo by Sam Kirton)

The early photos were selfies of just me, but photos with others were later added to the album. Those shots included not only people in our personal life, but also professional colleagues.

Removing the mystery

The Wizard of Oz,” a 1939 MGM film, chronicles the journey of a young girl from Kansas who is swept up in a tornado. Deposited in a faraway land, she searches for the Wizard of Oz to get home — but discovers the all-knowing wizard is simply a man behind the curtain. I don’t claim to be a wizard; however, I’m the man behind the Kirton.

I’ve never liked photos of myself, so this album was a challenge for me. In the beginning, I posted only positive, cheery photos like the one above. But I wanted my pictures to represent the truth of what I was experiencing. The photos began to capture everything in my IPF journey. There are countless photos of me on a gurney being prepped for a procedure. Others show me with an oxygen cannula adorning my face; some show me fully sedated and intubated following my bilateral lung transplant.

The journey continues

My journey continues today and will continue through the course of my life.

You may hear post-transplant patients say they traded one set of challenges for another. This analogy is accurate. For that reason, we continue to add photos.

I have several pictures of my grandparents. There’s a photo of Susan and me before every clinic appointment over the past six years. I want our grandchildren to have hundreds of photos to treasure. Our family, our village, and our friends can all see our experience with IPF.

I have this disease, but it does not have me. I’m going to continue to fight, thanks to the beautiful lungs gifted to me by my donor. I still haven’t had any communication with my donor family, but perhaps one day I will, and I can share these photos with them, too.

It’ll let me show them how I continue to make every breath count.


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.

Comments

Karen Carns avatar

Karen Carns

Another good, newsworthy article Sam! You never cease to amaze me with your topics. Maybe you are like me and do your better/best thinking in the shower so that starts off your day of a topic! I have learned to take a notepad to the bathroom counter because by the time I return to the kitchen, the thought has left my mind!

Thanks for your continued support and encouragement to all patients, caregivers, families and other IPF supporters.

Karen

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Samuel Kirton avatar

Samuel Kirton

Karen,

Thanks for your continued support of my column and your comments. I do often make notes of column ideas the moment they come to me. I do use the Notes app in my phone to note the idea and what made me think it might be a good idea for a column.
Thanks for your encouragement. Writing this column is therapy for me and I am always glad to know it influences or helps others.
Sam ...

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Marylou avatar

Marylou

I’m going on 79 wanting to be 80. I have had IPF for 11 years. I have a loving family and 5 cats that keep my blood pressure in check. When I first got the IPF I thought I’ll just swing throug this and come out fine. Haha on me. Here I am 11 years later and on hospice looking at everyday as special. Some days are pretty grand but others I would skip. I realized it’s fun being in this world even if I have a disease..now taking photo’s every. I think I will joint you on that one. But I’m too old for transplant. You’ll have to carry on.. thank you for the inspiration. My best to you and your family

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Marylou,

Thanks for reading my column and for your note. I hope you do create a photo journal to share with your family. It will be a gift which can be shared for generations to come.

Sam ...

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