Choosing Between the 2 Faces of Sarcoidosis
Like a coin, there are two sides to every story. A disagreement involves two different perspectives. A face has two cheeks. And sarcoidosis has two faces. I was reminded of this while helping an old friend and his son last week.
My friend called me two weeks ago and said his son was shooting a music video. Because of my background in video production, he wanted to pick my brain about equipment, production strategies, and post-production techniques. His son recently graduated high school and has been accepted into Drexel University on a full scholarship.
I was happy for my friend and his son, and was ready to do anything I could to help. My friend texted me his concerns, and later, his son called me and we talked in depth for over an hour.
I can’t begin to explain how grateful I was that someone was once again relying on my knowledge and experience. The more the son and I talked, the better I felt, and the more excited I became. I felt like I belonged somewhere.
I’ve been working in the video business for over 30 years, and I can’t think of a single day when I didn’t enjoy my work. It’s my first love, but don’t tell my wife!
However, if I’m not careful, sarcoidosis can make me believe that I’m limited in life, and in my ability to work.
I haven’t picked up my camera in over three years. The last time I shot anything was the week before my first spontaneous pneumothorax in 2018. This phone call and conversation was just what the doctor ordered. The young man inspired me to break out of my shell and revisit the part of my life I thought was over because of sarcoidosis.
I was so excited that, during a conference call with my friend and his son, I blurted out, “I’ll take your tests for you! Your professor will wonder how a freshman knows more than they do about video.”
His father quickly talked me out of it. “Don’t tell him that. He’ll call you!”
Turning the other cheek while living with sarcoidosis
This situation reminded me that sarcoidosis has two faces. The more prominent face urges me to limit myself because of my condition. It tells me to accept it, since there’s no cure. I may move a little more slowly, need to be conscious of my surroundings, and require supplemental oxygen, but sarcoidosis has got me all wrong. I haven’t lost my excitement for living, and I haven’t compromised on any activities.
Since my initial conversation with the young man, we’ve had several more. I dusted off my camera, charged the batteries, and pulled out some other equipment I thought he may need. On the day of the shoot, I got a text two hours beforehand that everything had been canceled due to the weather. Needless to say, it was a big letdown for me and my son, who was planning to join me. I was looking forward to sharing my knowledge and experience with the young folks.
Although the video didn’t happen that day, it still felt good to get back into the groove and immediacy of video production. This is the other face of sarcoidosis: It allows me to forget about the condition and feel comforted by getting back where I belong.
There are two sides to every dilemma, compromise, and disagreement. Those of us living with sarcoidosis have to determine which side we’ll choose: the side that holds our emotions hostage, or the side that enables us to live freely?
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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.
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Comments
Theresa Govan
Charlton - this is a great motivating article! I have had pulmonary Sarcoidosis for 42 years and remember many times when I almost let it get me down and stop living productively. I'm glad I did not let this happen. Keep on inspiring the community of warriors with your life experiences.
Theresa
Charlton Harris
Thanks, Theresa. There are times when I feel like I'm being consumed emotionally by this condition. But I realize that as long as I'm moving, breathing, walking, and talking I'm still living. And I'm going to keep living with no regrets and no compromises!
Jeanne B
I am sorry that Charlton was not able to learn about the Third side of sarc. The side I found. Not a cure but a life free of symptoms.
Annel
Great article, Charlton. Do the best you can with the time you have....I move a little slower these and rest when I need to. I was diagnosed last year.
Lisa N
Hi JeanneB. Where can I find out more about living a symptom-free life with sarc?
Charlton Harris
I'd like to know too! I have my own remedy of making this work for me! lol
Ronny Cerniga
Thank you for a great post. Losing my career that I had worked so hard to grow for over 30, because of the disabling effects I’ve had due to Sarcoidoses, was a gut punch. I fought it with all my energy before accepting it *accepting and liking something are two different things. Your story inspires me to continue looking for creative ways to share and apply my knowledge and experience.
Charlton Harris
Hey Ronny,
Thanks for reading and I hope you can inspire others with this "condition" to realize it may slow us down, but it doesn't have to stop us from living the life we want or the life we love. It only adjusts the conditions, not the desire.
Peace and Blessings to you in 2022!