Despite Everything I’ve Lost to Lupus, I’m Still Smiling

It’s funny what we take for granted — including the sound of our voices. For a few years, I took voice lessons and participated in community theater, often auditioning and making it with my singing voice. No, it was not Broadway, but it was fun and I truly enjoyed it.

When I started experiencing lupus symptoms, one of the biggest issues was frequent laryngitis. There were days when I had a voice, but it was husky, hoarse, and unfamiliar-sounding. Fortunately, I was doing plenty of YouTube videos back then.

I would never have thought that I would miss the sound of my own voice and have to revisit it using my old videos. The voice I now speak with is courtesy of lupus. I no longer sing because I sound like a squeaky mess.

Recently, I was invited to join a small group of friends who were singing karaoke. Initially, I said I would just watch, but they were having so much fun that I decided to participate. When it was my turn and I heard what came out of my mouth, singing a song I’d sung a thousand times before, my heart hurt. It was the song I would sing for auditions.

Is it strange to realize I had not attempted to sing since my voice changed? I apologized for the torture that I felt I was causing. My friends reminded me that they are not singers, and karaoke is about fun, not judgment. So, I squeaked out a few more songs.

When I got home, I thought about my personality. I thought about my lost hair, my lost voice, my lost career, my lost savings, my lost health, my lost mobility, my lost weight, and my lost hobbies. I wondered how I have not lost my mind.

I constantly think about the things I love but can no longer do. I live a modified life. But my positive outlook and giant smile have always been consistent. I will be honest — I don’t know where they come from.

I have the same emotions as everyone else. However, there is almost always anger underneath. Still, I make jokes. Once upon a time, I would have hated hearing the saying, “it is what it is.” But I’ve now accepted this in many areas of my life.

I would love to be able to change certain things, but I can’t. I have lupus. I have a squeaky singing voice. I am super skinny. I have no hair. (I did recently buy three hair hats, though). See? Humor — I can’t help myself. Yet, while smiling through the roughest times of my life, I am, in fact, helping myself.

One of my new “hair hats.” (Photo by Kellie McRae)

My curly “hair hat.” (Photo by Kellie McRae)

There have been so many times when I longed to be able to do “simple” tasks, and I have felt sad, angry, helpless, and hopeless about things I have lost. However, I refuse to stay down, and for that, some days I believe I am literally insane. Kidding, just kidding! More humor. I just can’t seem to stay in a low place, and for that, I am very grateful.

I miss all of the things I have lost in my battle with lupus, but the best I can do is the best I can do. I try to find other things that are fulfilling, I try to only focus on things I can directly impact, and most of all, I try not to focus on what is no longer.

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Note: Lupus News Today 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 Lupus News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.