Sarcoidosis Doesn’t Stop You From Enjoying Simple Pleasures

[Joachim]

Discipline is a trait that takes determination to mature into an art. By nature, we’re not disciplined creatures. This makes our life’s journey more eventful, especially living with sarcoidosis.

When I entered this fight, I didn’t know what I would be up against. However, I try not to let the obstacles I’m faced with get me down. I simply adjust.

The way I look at it, all of us living with various stages of sarcoidosis are still here for a reason. We have things to do, people to love, and stories to tell. Trust me, they become more interesting with each passing day. 

Last weekend was fairly uneventful for me, thank goodness. I did the usual things with my wife, chauffeuring her and her mother around to various stores in the area. I generally don’t mind when we visit one of the discount club stores, where I can ditch them and browse by myself.

I usually get a cart that can hold my small oxygen tank. Between my wife and her mother, it doesn’t make sense to get two separate carts — we barely fill one collectively. On this day, I used the store’s scooter offered to handicapped customers. This way, I can get what I want and not have to follow them around the store. It’s my getaway vehicle!

Remember to do you first

While shopping, I decided to make meatloaf for Sunday’s dinner. I got the necessary ingredients, and we were ready to head home. On the ride home, my mother-in-law mentioned she was going to make meatloaf as well. I told her I was going to smoke mine.

It’s been months since I’ve smoked anything, partially because I lost my dog in April and I was used to his company when I grilled. My wife mentioned that it was supposed to rain on Sunday, but the idea was already in my head, so the plan was put in motion.

Sunday arrived, and the weather was partly cloudy with small hints of sunlight shining through the clouds. While mixing my meatloaf, my wife told me that her mother mentioned I could put my meatloaf in the oven with hers. I kindly thanked her, and told her I was still going to smoke mine.

When I went out to clean my smoker, the clouds became thicker than earlier. It looked like it might rain. That didn’t matter because I had my mind set on smoking my meatloaf, and barring a report from the National Weather Service, this meatloaf was getting smoked — today!

My wife was upset that I was still going along with my idea, but I shrugged it off. Although she’s my primary caregiver, at some point people have to realize that doing some of the things you love gives you a sense of freedom and independence. It makes you feel like you’re still relevant.

I loaded my coals, finished prepping my meatloaf, and lit the fire. While waiting for the coals to catch, I ran to get a six-pack of beer — my guilty pleasure while on the smoker. 

En route, it started to rain!

I’ve grilled and smoked in the rain before, and I was determined to smoke a meatloaf that day.

By the time I got home, the rain had subsided a bit. My wife, still irritated by my decision, didn’t say a word. She just hummed the disgruntled wife song.

I got the coals hot, put my meatloaf in the smoker, and sat down for a beer. Once the smoke started billowing, the sun came out. Maybe following through with something I started was a good idea!

No matter what, enjoy the ride

Sometimes it’s best for those of us with disabilities to take a leap of faith. Caregivers have our best interests at heart, but they don’t understand how our individual disability affects us not only physically, but also mentally. I never intended to upset my wife with my decision; however, I did expect her to understand that this was something I wanted to do to feel like my old self, or at least to feel like I mattered before the disability.

I can’t begin to express how great I felt, even without my little doggie. He would’ve been excited to be outside enjoying the weather and doing what we love to do.

(Photo by Charlton Harris)

In the end, my wife was very pleased with how the meatloaf turned out, and I noticed she had seconds. More importantly, she understood that doing things I love to do is part of my mental and physical rehabilitation. As I’ve said time and time again, sometimes you have to get out of your own way to make a way.

(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.

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