Family Memories Remind Me That Sarcoidosis Doesn’t Own Me

In February, I wrote that sarcoidosis doesn’t play fair. Over the past few days, I’ve thought about that column. It is spooky, but true: Sarcoidosis is a crafty annoyance that keeps you mentally alert. Stay vigilant!

This week, I “organized” my studio area. My wife would say I was just shuffling junk from point A to point B. But as any self-sufficient, conscientious man would say, “I was cleaning!”

While making progress, I came across a box of old family photos that I inherited when my mom passed. Some were taken before I was born, and some when I was very young. As I continued to look, I saw pictures I took when the photography bug bit me.

I can’t describe all the emotions that hit me. It was one of the best moments I’ve experienced in a long time. It was even more special considering the socially distanced way we’re currently living.

Most of the family members pictured are gone, but the memories we shared are indescribable. 

Memories

This is how sarcoidosis plays on your emotions. One minute, you feel good, and the next, you recall a moment that had a lasting impact on your life. All the while, you try not to feel guilty about the direction your life took. Remember, this condition we have is no fault of ours. That’s life.

I was diagnosed with pulmonary sarcoidosis a month or two after my mother suddenly passed. Two weeks prior to her passing, she accompanied me to the hospital for an outpatient procedure that may have been related to sarcoidosis, but who knew at the time? I don’t think about that memory often, but for some reason, I did on this day. 

When I thought about that day at the hospital, I started laughing. My mom was a character. She had the temperance and humility of a mother, but the edge of a really cool dad. To this day, her memories keep me laughing, which is why I have to keep life moving. She did, even after her heart surgery. 

Don’t feel guilty for moving on

After my mom’s passing and my diagnosis, my main concern was getting my mom’s affairs in order. That took about a month, and in the meantime, I had to deal with sarcoidosis.

But I forgot all about it. I had to get back to my life and restructure my sense of normalcy. Neither was easy. I just knew I needed to get back into the game, or I’d be swallowed by a sea of self-pity, regret, guilt, and emotional paralysis.

Once the dust settled and my life adjusted, I got back into the game. But it was no surprise that life got in the way, and more adjustments had to be made.

Good, bad, or otherwise, I’m still here, and I don’t think it’s by accident. I don’t think any of us are dealing with sarcoidosis by accident: We all have a story to tell.

The past can be comforting

Looking at the old photos was more than special. I needed to find them when I did to get back on track.

I saw pictures of my grandparents, aunts, uncles, cousins, and my mom growing up in the South before they moved to Philadelphia. I even have pictures of me on a tractor plowing a field with my uncle.

While looking at the memories, it struck me that my family never let any obstacles or setbacks stand in the way of their growth and progress. 

As they got older, health issues became apparent. They took care of themselves and, like me, kept moving. They weren’t so naive as to believe that a chronic health condition would resolve on its own, but they didn’t own the condition as theirs. It was just something they lived with. It was the card they were dealt, and they adjusted their lives accordingly. 

I felt rejuvenated looking at the photos and reminiscing about my life and fun times with family. I’m not 8 or 16 years old anymore. I’m 56. I can’t run in a field or chase my cousins with firecrackers, but at 56 I have experienced childhood joys and adult issues that most will never know.

There are some things I can’t do, and some I take my time doing, but at least I can tell the world I picked cotton, I drank water from a well, I chased pigs, and I learned to ride a bike in a sand driveway. I have the pictures to prove it.

But most importantly, I know what it means to keep moving while enjoying my life.

(Photo by Charlton Harris)

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Note: Sarcoidosis 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 Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.