On My Own: New Adventures in Living With Sarcoidosis

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by Charlton Harris |

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What have you done today that would make a difference in your life? What did you do yesterday?

Are you just going through the motions of existing, or are you living the adventures of your life?

These questions may sound a little suspicious, but they have to be asked. They’re questions I ask myself several times a week, and I think they’re important; otherwise, there’s no accountability for my choices, for how I live. It may not make sense to some, but to a small population, it makes perfect sense. I’ll try to explain with an example.

A new opportunity for adventure

Over the past few years, quite a few friends of mine have lost loved ones. It just so happens that their loved ones were also their primary caregivers. Talk about a scary thought. Imagine losing your caregiver. What can you do?  With or without your caregiver, life goes on. What will you make of it?

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A couple of weeks ago, I had my wedding anniversary, and for the first time in 30 years, I spent that day without my wife. It was time without my caregiver, time for personal accountability, and time, perhaps, for adventures in living.

My wife and I have been married for 25 years. We dated for 10 years before we got married. I can honestly say she’s my best friend — and we still like each other! — even if we’re sometimes like oil and water. At times, in fact, I’m quite a handful. Still, we manage to tolerate each other, knowing the endgame is most important.

Before our marriage, we had a son and bought a house. We thought we had everything in place to grow old together and enjoy life. I had a great job in advertising while she was working as a mental health counselor. We welcomed our daughter soon after. By all accounts we were doing pretty well — then when we least expected it, life got in the way.

I lost my mother and my advertising job, and then I was diagnosed with pulmonary sarcoidosis. It seemed like everything hit me at the same time. But the biggest hits for me were losing my mother and my job. The sarcoidosis diagnosis didn’t seem to bother me that much.

Because I was functioning on all cylinders, I still had to make things happen. Remember, I’m a husband, dad, homeowner, and breadwinner. But making adjustments after these changes wasn’t easy. Still, I had to do it. When young folks talk about “adulting,” I laugh; they have no clue what it takes to “adult,” nor do they want the responsibility that comes with it.

These concerns were before me on my anniversary weekend. Could it be a sign that I’m capable of taking care of myself, or a warning shot for me to look over my shoulder and behave?

On my own

While she was gone, I was on my own. My son came home to help out, but he had his own responsibilities. I never wanted to be anyone’s burden, and I understand that he has a life of his own. The way I look at it, if I’m breathing, I’m living, and I can at least try to trust myself again to do things independently.

It was like having a different sort of date with sarcoidosis while my wife was away. It reminded me of an old Billie Holiday song, “Good Morning Heartache.” “What’s new?” the lyrics ask.

I wanted to accomplish several tasks before my wife returned home, and I had quite a daunting list. Moreover, the entire country was in the middle of a serious heat wave, which can take a toll on my breathing. I took my time and accomplished some of what was on my list — not all. Still, I was accountable to myself, without a caregiver present.

Further, it was the time without my wife, just hanging out with my son, that was particularly well-spent. It was like the men’s retreats at my brother-in-law’s house. In this time, I was really living my own adventure — not just existing. By the time my wife — my best friend and caregiver — returned, I’d answered some of my questions.

Has sarcoidosis paralyzed you from trying new experiences? What have you done for yourself today? Have you allowed sarcoidosis to dictate your life? Has sarcoidosis kept you fearful of trying?

Honestly, it has sidelined me on occasion. That’s a byproduct of the illness; it happens. Some effects of sarcoidosis may slow my efforts, but they won’t stop me.

I’m thankful for yesterday, blessed for today, and looking forward to tomorrow. In the time between, I’ll party — responsibly, of course. It’s probably not a good idea, but I have to celebrate life — to live my adventure. That’s really all that matters, anyway.

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.


Maggie Bienkowski avatar

Maggie Bienkowski

I was diagnosed with Neurosarcoidosis after a VP Shunt surgery in 1997 and the brain biopsy in 2022. I battled this disease and many failed treatments going to Neurologists with no experience. Fourteen years later I found I could not breathe well and was violently coughing with oxygen level at 87. Sarcoid was now in my brain and lungs and shortly thereafter one area on my face was biopsied and diagnosed with facial sarcoid. It has been a long journey with a wonderful husband and family by my side. Currently asymptomatic. I would be happy to document my journey and how I persevered and continued to lead a great life even with this battle.

sha re with FSR or any Sarcoid convention etc. Please contact me if you or others are interested. Thank you, Maggie Bienkowski


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