I Wish That Living with My Complicated Kind of ‘Normal’ Were Easier

Sometimes, I wish it were easier.

I wish it were easier for doctors to pinpoint the root cause of my mysterious daily symptoms. I would like to receive answers that would better explain the reason behind the health issues that I’m enduring. Aside from giving me peace of mind, it would make communication with my loved ones smoother.

Lately, my health woes haven’t been straightforward, or easily diagnosable, and that’s OK. To me, this is normal. Living with SMA, I’m programmed to expect these kinds of situations and accept them as they come.

However, although I came to terms with this a long time ago, I’m still not sure how to answer the classic, “How have you been?” question from others. My definition of “normal” is anything but. My kind of “normal” is dealing with one health issue after another, sitting in countless doctor’s appointments feeling a little more perplexed than before, while learning to cope despite myriad clinical problems. In that respect, my life is as normal as it gets. Trying to explain that concept of normality, on the other hand, is a different story.

In other words, my normal is not-so-normal to your average person, but typical of my abnormally low standards of the definition. Was that a jumbled mess to comprehend? Welcome to my life of trying to convey that to others. To give you a real-life example, my honest and contradictory response to how I’m doing typically goes something like:

“Hey, things are well! I don’t think I’m going to make it out tonight, though, because I have this awful ear infection. Thick mucus pours out of my ear every 10 minutes. (It’s so gross waking up every morning in it!) Sometimes, there’s a trace of blood in it, too — ugh. I can’t hear anything and feel dreadful overall as my body tries to attack this infection, so going out is not in the cards. I’m on day 10 of this. My doctors are unsure about why this happens every couple of months. But don’t worry, I’m fine! Another day in the life — ha-ha.”

Nothing about the aforementioned response comes across as normal — of that I’m sure. But the dictionary definition of “normal” isn’t part of my vernacular while living with SMA. So, despite my best efforts to normalize what I’m going through, I often fall short when trying to convey reassurance of my well-being to others. Even so, sometimes I wish — at the very least — that I could find simpler ways to explain my seemingly abnormal health problems. Sometimes, I long to experience what normal feels like.

Sometimes, I wish it were easier.

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Note: SMA 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 SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.