Life Is Worth the Picture

Life with pulmonary hypertension was far from picture perfect, but I always took snapshots anyway. No filters, just life the way my own eyes had seen it.

I captured reality from all angles: the pleasant and the painful, the boring and the extraordinary, the successful and the disappointing, the predictable and the unexpected, the peaceful and the chaotic, the fun and the frightening, and everything in between.

Creating memories through pictures has always been a passion of mine, but when my son Cullen was diagnosed with PH, it became an obsession.

As a mother and caregiver, I was focused on both survival and preservation. Having a child with a life-threatening illness took the sarcasm out of the expression “Take a picture, it lasts longer.” Instead, that became exactly what I wanted to do.

I didn’t just want to see life happening, I wanted to save it all for later.

Cullen lights the Christmas star in December 2013, eight months before transplant. (Courtesy of Colleen Steele)

Picture-taking also became part of my effort to spread PH awareness. I discussed and wrote about PH a lot, yet pictures truly seemed to be worth a thousand words. Especially during the years when my son didn’t “look” sick.

With Cullen’s permission, I visually documented clinic visits, hospital stays, tests, procedures, and treatments. I did this so people could see how real, scary, and disruptive PH is and what my son was going through just to stay alive. The little boy who didn’t look sick was going through a lot, and I wanted people to understand this.

Permission, as I mentioned, is important. Every patient, no matter their age, deserves respect and privacy, both at home and at the hospital. I have shared many pictures through social media over the years, but there are more in my personal collection that only family members have seen.

Cullen and Colleen on the day he received the transplant call in August 2014. (Courtesy of Colleen Steele)

As Cullen aged and his health declined, he understandably became much more selective about when his picture could be taken and who could see it. When he received his heart and double-lung transplant, I shared a summarized version of his recovery in print and pictures on social media. The full story was reserved for our family album and archives.

Which brings me to a lesson I learned the hard way: Back up your photos in multiple locations. Devices get lost, hard drives crash, and unfortunately, you might get hacked. I make a greater effort now to store my pictures on my computer, on an external hard drive, and in the cloud.

I also enjoy viewing pictures the old-fashioned way — by printing them out and placing them in a frame, album, or scrapbook. I fear that the experience of holding a picture in hand is becoming as lost to technology as the hardback and paperback novel. I think some memories are worth the extra effort, don’t you?

Vacationing in Utah in September 2016. From left, Aidan, Colleen, Brian, and Cullen. (Courtesy of Colleen Steele)

However, the greatest loss of all are the pictures not taken. I take fewer of Cullen these days because the introvert in him won’t allow it. A more common reason to dodge the camera is fear of unflattering pictures. I used to feel frustrated when vanity kept friends and relatives from having their picture taken, but the older me gets it. There are more times than not when I feel self-conscious when being photographed, but I still say, “Take the picture, it will last longer.”

Another lesson I learned between PH and post-transplant picture-taking is to do it in moderation. It’s as important to partake in life as it is meaningful to preserve the memories. A few still pictures are better than none, and the memories are more valuable when experienced as well as captured.

Mother’s Day, 2019. From left, Aidan, Colleen, and Cullen. (Courtesy of Colleen Steele)

This holiday season, we will all hopefully stay safe by remaining at home and limiting how many people gather under our roof. But the pandemic doesn’t have to stop us from seeing each other. Take pictures, flattering or not, and post them to social media. Create and send picture holiday cards. Click a screenshot of video chats. Reminisce over old pictures and consider what they mean to you when tempted to hide from the camera.

Cullen bonds with his brother’s puppy, Harmony, in November 2020. (Courtesy of Colleen Steele)

I take to heart Jim Croce’s lyrics in “Photographs and Memories”:  “Photographs and memories/ Christmas cards you sent to me/ All that I have are these/ To remember you.”

Life right now might not look picture perfect, but years from now, the memory might be.

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Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.