The Men in the Mirror: The Difference Between My Dad and Me
I took a shower yesterday and then had a hard look at myself in the mirror. I didn’t like everything I saw. Later, I was helping my wife clean our living room and I saw a photo of my dad I had taken years ago. I didn’t like what I saw in it, either.
When I looked at my dad’s picture, I saw a man who could’ve been whatever he wanted to be, and who probably didn’t live up to his potential because he feared for his health and wasn’t confident in himself. I remember him as a man who did just enough to get by.
That impression of him has always stuck in my mind, and I have tried to get my children to understand that just getting by is like doing just enough to survive — but not enough to be fully alive.
My parents split up when I was about 10. My dad and I kept in touch over the years, but we lost contact about 20 years ago. He moved frequently, so it was hard to find him, but he had a cousin who seemed to know where he was every time he’d go off the grid. So, we’d be able to reconnect.
I think part of the reason he did just enough to get by was because he had epilepsy and felt like he needed to play it safe. But my dad wasn’t the only one living with a serious medical condition. My mother suffered from congestive heart failure, diabetes, and asthma.
Seeing myself in my father
But it’s my dad’s health problems, and what they did to him, that haunt me a little.
When I look at myself in the mirror, I see my father looking back at me. I see the creep of age and reminders to remain active — graying hair, flabby arms, and a small potbelly where there was once a trim, athletic figure. And I see the advance of my disease — scars from chest tubes to treat two incidents of spontaneous pneumothorax and from cuts to treat crepitus. Recently, I’ve had to add a few more doctors to my medical team, and I’m now being treated for pulmonary hypertension.
I see my father, but there’s something I don’t see when I look in the mirror: I don’t see in me a man doing just enough to get by.
Instead, I see someone more determined to enjoy his life with his family and friends. I see a man who refuses to give up on himself because of his health or what the future might have in store for him. I see a man committed to not letting his health condition take his life away from him.
Maybe if my father saw what I see in the mirror, he would’ve been more inspired. I’ll continue to be inspired and not deflated by what I’ve been through with sarcoidosis. I intend to do a lot more than just get by.
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Comments
DebbraP
Charlton, glad you see the difference between you and your father. I read your articles and think you are doing better than most Sarcies. We should give ourselves credit when credit is due. Others may not understand what we are going through so may not know when/how to give us credit but we do. I've accepted the Sarcoidosis and accepting it has helped me to move forward with making little goals for myself. For instance, if I can perform more than one chore in a day, be it showering, doing laundry or cooking, then I tell myself I am doing alright. And then maybe in a few more days I will add yet another task. And who knows, maybe I can build up to bigger goals outside the home. But if I compare myself to other family members like you've compared yourself to your father, I only get angry. That's because I know none of them would be coping with this Sarcoidosis thing as well as I am. They'd be weak, complain and demand to be taken care of. Well, I'd like to be taken care of too but saying so only got me into trouble. So I am on my own with coping and living with The Beast. But I have goals and my attitude and what I do with it is all my own. We don't have to be like others. Not even blood. It's okay to be our own person. Charlton, you seem like a pretty great person to me! Keep on keeping on!
michael russo
i have sarcoidoses in my lungs and heart and my breathing is deteriating and wondering if there is any new drugs that can inprove my breathing regards michael 0450784760
DebbraP
Michael Russo: I take Prednisone, Methotrexate, generic Singulair (Montelukast) and daily inhaler Breo Ellipta and am on supplemental oxygen 24/7. Without the Prednisone, Montelukast and Breo, I struggle even more to breath. I take Folic Acid daily to deal with side effects of the Methotrexate and fatigue. But the fatigue is always there. Worse without the Folic Acid but nonetheless, fatigue never goes away. It is the most frustrating effect of Sarcoidosis.
I found a Rheumatologist who wants to try the arthritis drug Humira on me because he's had some success treating other Sarcoidosis patients with it. One woman was even able to get off the oxygen and the Prednisone. That would be great. Because of unexpected circumstances, I have not been able to return to him to start but as soon as I can, I definitely want to give Humira injections a try. Others are treated with Remicade and similar drugs administered every few/several weeks via an IV at a clinic, Good luck to you. Hope you do better.
Charlton Harris
Hey Deb and Michael, sorry to hear about the abundance of meds that you're on. Like I've heard about sarcoidosis, it's a mysterious illness. You might want to partner with another pulmonologist or cardiologist that specializes in Pulmonary Hypertension. I was currently diagnosed with that and was told it can occur with lung disease. I'm currently taking Tyvaso and have been having some pretty good results with it, not being out of breath or easily winded. You may want to discuss taking a fluid pill. I know with me, excess fluid makes me feel wonky, listless, dizzy, and out of breath. I also still take my herbal vitamins too. Check with your physician about my suggestions.
Peace!
DebbraP
Charlton, funny, I was just going to ask about your Pulmonary Hypertension. I've wondered if I might have it. How were you diagnosed and what kind of doctor diagnosed you? I'm already on the prescription diuretic Furosemide and that definitely helps with my breathing. If I skip it even for a day, then I struggle a little with breathing. I also read and experimented with drinking more water. I read that the body tends to want to hang on to some water if it's not getting enough...so we have to stay hydrated instead of avoiding it out of fear of retaining water weight. I've increased my water intake and sure enough, more came off with the Furosemide but an amount that needed to come off (finally) that hadn't before. Now I can see my shin bones again. I also keep to a low-to-no sodium diet. Becuz of his schedule, I can't see my Pulmonologist til January but I am going to bring up Pulmonary Hypertension with him and the Tyvaso. Thanks for sharing!
Charlton Harris
Hey Michael, I would check with my pulmonologist about an inhaler called Tyvaso. It's used for pulmonary hypertension which can be a result of being out of breath, tired and lethargic. I've been taking it for about four months now and I can tell a difference. Thanks for reading a commenting on my post.
Peace!
AMANDA Annette SHIELS
Hi my name is Amanda and I am 50 years old, i live in Derry northern Ireland. I follow your post all the time. I was diagnosed with sarcoidosis a year and half ago. I had breast cancer and through deep scanning they found scarring in the lungs then, through procedures sarcoidosis. I think what gets me more with this illness is the fatigue. I know there is different levels with this illness, yours i believe can be fatal. Anyhow thankyou for all your posts and knowledge. Amanda
Charlton Harris
Hi Amanda, thanks for reading and commenting on my post. As my doctors remind me, my condition is "stable". At 57, I'm still able to get around pretty well without being as fatigued as I've been in the past. There were times when I was so tired that everything was a chore. You may want to check with your pulmonologist and cardiologist regarding pulmonary hypertension. From what I've been told, it's a result of lung disease. I'm moving to more of a plant-based diet to try to get more oxygen in my blood. . . that would help with the tiredness. I also take herbal vitamins too. I've always taken them and I believe they help a lot. Lastly, I'd discuss a diuretic with my pulmonologist. You'd be surprised how fluid build-up can affect your breathing. I was admitted into the hospital back in May and I stayed a week. Within that week, they got 7 liters of excess fluid out of my system. I can't tell you how good I felt after that. This sarcoidosis is definitely a learning process, and it's also an experience we can share with others!
Peace!