Living with fear after the sudden loss of a beloved caregiver

[Joachim]

“Blessed are the merciful, for they will be shown mercy.” — Matthew 5:7

My issues with pulmonary sarcoidosis keep me focused on living each day as productively as possible. Some days are tolerable; other days are harder. But each day is a blessing that shouldn’t be wasted or taken for granted. I try to face each day with more courage than I had the day before. That in itself is an adventure.

A few weeks ago, however, I experienced one of my biggest fears: I lost one of my primary caregivers when he suddenly passed away. He’d helped me during the day, and I didn’t know how to process his loss. I was in shock. I still am. I’m afraid of what happens to me going forward.

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This caregiver was by my side every day. He always made time for me between his schedule as a photographer and a culinary instructor for disadvantaged kids. I enjoyed his company and our many conversations.

He wasn’t one of my initial caregivers; he didn’t take on that role until I suffered the first of several pulmonary pneumothoraces. After those events and countless hospital stays, he was a consistent caretaker and friend. He’d often take me to my doctor appointments and inquire about the visits. He’d also accompany me to the gym when he felt up to it.

One time when we went, the gym had just added a stair-stepping machine. He asked if I was going to try it. I laughed and told him, “Unless you want to see a man down, I won’t bother it, and it won’t bother me.”

He always got a big laugh when he witnessed me attempting jumping jacks. I explained to him that breathing affects what your body can and cannot do, and that includes a lot of motor skills. That’s why I continue to go to the gym and try to push myself a little more each day.

We’d talk about our responsibilities as men, as well as how my health challenges had changed my life. He knew there was a lot I couldn’t do, but he never made me feel inadequate. I held onto the thought that I could, one day, do what challenged me. If nothing else, I would try. I told him I’d never surrender to the idea of being incapable of living normally, or at least, as normally as I could.

I also told him I’d never allow myself to be a burden on anyone.

He never let me forget that I had much to live for and that giving up on myself wasn’t an option. Not only was he my caregiver, but he also believed in me.

Moving forward, somehow, without my caregiver

I’m now faced with the incredibly difficult task of moving on without my caregiver. What’s worse is that this caregiver was my son, Cameron.

Every day, Cameron would make sure I did something to improve my quality of life, whether it was going to the gym, walking outside, or doing something I love, like cooking. He always made these activities more of an adventure for me than a duty. I have friends and family who are concerned about my health, but he genuinely cared about the quality of my life.

Since then, I often smile about how much time he took away from himself to make sure I was doing well. At times I’d become ill-tempered, but he’d just laugh at me. I think he realized my outbursts were more about my frustrations with my disease than anything else.

Cam made my life dealing with sarcoidosis more about being thankful for what I can do, without focusing on the limitations I face. I hope that anyone with a caregiver will be as blessed as I was to have Cam. He made my adventure with sarcoidosis more tolerable and less intrusive, but more important, he made me continue to believe in myself.

Thank you for everything, Cam. You made me proud to be your dad. It always has been and will be, me and you.

Charlton Harris with his son, Cameron, around Christmas. The background is wallpaper. (Courtesy of 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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