Sarcoidosis Can Be a Lonely Adventure, but It Doesn’t Have to Be

[Joachim]

Take a minute to think about what’s really important in your life. I find myself doing that more often than I used to. I often think about the things that mean the most to me like family, health, physical abilities, and friendships, but health and family are the most meaningful to me. That’s not to say that other things aren’t important, it’s just that I’ve narrowed my list. 

Through the years I’ve always been extremely health conscious, and I’ve channeled that interest to my wife, my kids, and even other family and friends. I’ve enrolled in two online nutrition courses. I love the courses and I share the information I learn with my family and friends. And I’ve also learned how my passion for food and nutrition has benefited my health.

Time to get away

Last weekend, I had an opportunity to hang out with my son, and it quickly became a pleasant experience. Every few weeks, I take a trip about 40 minutes outside of Philly to Kennett Square, Pennsylvania, to visit my brother-in-law. Before this particular trip, my son asked if he could come hang out with the old guys.

I told him it wouldn’t be an exciting trip, just me hanging out with my brother-in-law cooking, drinking beers, laughing, and “slumming” like college students on a Saturday afternoon. I told him I enjoy getting away from the hustle and bustle of the city and having time to recharge and concentrate on improving my physical and mental health.

We headed out on Friday and stayed until Monday. We had a blast. We weren’t on any time schedule, and no one asked us to do anything we didn’t want to do or interrupted our relaxation space. We enjoyed cocktails, we cooked, we ventured out to a farmers market (my guilty pleasure), and we listened to some Miles Davis, Roy Ayers, and old Richard Pryor comedy CDs. It reminded me of growing up with the adult men in my family, and now I was experiencing that with my son. Priceless.

Back to reality

We arrived back in Philly on Monday. My wife had scheduled contractors to come out to our house to do some work, so I had to put on my “husband hat” to deal with it. Surprisingly, all went well, and I had no complaints. When she arrived home she was pleased, too, and that’s all that matters anyway.

On Tuesday, I received a phone call from my cousin in Washington, D.C., telling me that his mom passed away. I’ve always been very close to my aunt, who was my mother’s oldest sister. When I moved to Washington for work, I stayed with her for a few months before I got an apartment. We remained close even after I left the area.

I made a few trips with my family to visit her over the years. We stayed with her and reminisced about the time I lived with her. My aunt had been slowly declining in health since 2017. When I had my first spontaneous pneumothorax, we talked almost every day. Coincidently, when I was in the hospital, she had been admitted too after a lung cancer diagnosis.

After we had both returned home to recuperate, we would call each other every Sunday afternoon for “welfare” checks. We would talk while I cooked dinner. Her dinner already would be done, and she would tell me what she’d cooked before telling me how to cook mine. 

Our relationship became closer over the past three years. She got a kick out of my teasing her about being her favorite nephew. Last December, my son and I traveled with my mother’s youngest sister and her husband to Washington to visit my aunt. Although she was frail, she was in good spirits, especially when she saw her favorite nephew and his son. We stayed a few hours, took some pictures, and left. It was a bittersweet visit.

A support system makes a big difference to your health, especially when you have challenges. In one weekend, I lost an aunt who had supported me over the years and grew closer to my son. When people appreciate you it makes all the difference. Each day I’m learning more about not taking anything or anyone for granted.

Appreciate the little things because they mean more than you know. Rest in Peace, Ro!

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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 Services, and are intended to spark discussion about issues pertaining to sarcoidosis.

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