Using Your Truth to Light Your Path
Navigating children, a spouse, and pets in one house is hard, especially when we’re all there at the same time. Sometimes we’re together all day. If someone told me this could happen 20 years ago, I’d have called them a liar and it a deal breaker. I couldn’t imagine that lifestyle then, and still can’t now. But here we are going on two years.
In such a busy life, I try to spend time alone several times during the day, to get centered in my truth. And that drives me to my memories.
Of disability and hiding
I grew up with a family member who had epilepsy, but he never talked about it. I never experienced him having an episode. He acknowledged the illness, but never let it stop him from doing what he wanted to do, good or bad. From my limited knowledge of epilepsy, I’d say he lived a little recklessly through the years.
I would see him from time to time. I remember him being a cool, laid-back guy, but I think his disability made him feel that he had to be hidden. I think he felt it was best for him and others if he just remained in the background. As a former teacher used to tell my son, “You’re hiding in your jacket!”
Unfortunately, I found out he’d passed away about four months before I got the news. It had been several years since I’d seen him. I was a little sad about his passing because I would’ve liked to have talked to him more. I think he was one of those people who could give good life lessons from his different perspective — lessons you wouldn’t understand until you were in a similar situation, and then you’d have an “aha!” moment.
Sometimes I want to hide my disability, like him. When I go shopping, at times I won’t wear my portable oxygen because I want to look like the big, whole person I’m used to being — at 6 feet, 1 inch tall and weighing 219 pounds, I take up a lot of space. That person doesn’t need portable oxygen.
Then I might start stumbling while walking and need to take a few pauses. That’s when the oxygen comes out.
In the summer I don’t like to wear shorts because of the scars that sarcoidosis has left on my legs. I used to have nice looking legs, too. All the ladies liked them!
At such times I think about my relative with epilepsy and how we’re somewhat alike. He hid his true self to the point where he became someone else.
Sometimes I try to hide, but thankfully, my true self comes out.
Truth and consequences
One thing I learned from this hide-and-seek game is that if you continue to hide, you can quickly become what you’re hiding from. My relative used to love having a few drinks, and he would be the life of the party. That’s how he hid; his happy hour lasted the better part of the day. But I guess with all the hiding, happy hour got the best of him.
The more you hide from yourself or your truth, the easier it is for anything else to claim you as its truth. Your truth starts on the inside. Be mindful of yourself and your truth, and remember the best place to hide is in plain sight — oxygen and all!
I’ve accepted that there are things I probably won’t do again. The keyword is “probably.” Truth be told, I haven’t been in a position to try them again, especially swimming. But that doesn’t mean I can’t do it.
As long as I’m true to myself and my loved ones, then I can at least try to make those things I think I’ve lost happen again. If you believe in yourself and your abilities, you’ve answered the big question. Succeed or fail, at least you’ve tried and haven’t been hiding.
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.
Comments
Laurie Brunelle
Carlton, I so look forward to your weekly column. You’re always right on target for me and what I’ve experienced throughout my sarcoidosis journey and what health dilemmas I currently face. Your column is insightful and thought provoking. Thank you!
Denise MacRae
In our society it is hard to know how to act towards others with disability. I have seen in support groups online telling they have attacked people for asking them what was wrong. I find it funny how children will look at my oxygen hose on my face but the grown ups look away. I have nurses 24 hours a day now because all I can do it make it to the bathroom. Even they are confused wondering why I don't get up and walk more often. Because I am not crying in pain they cannot see what I am going through. So my attention has always been to become my own self advocate to keep myself alive. There are very few in the medical field understand what we go through. I was lucky to have taken care of my mom and dad who were oxygen and a slight idea how that works. Research all you can and pay attention to everything you eat. I am a graphic designer so of course I love what you do. thanks for a inspiring story. Denise