Columnist Joanna Buoniconti: My smile has changed, and I’m learning to be OK with it

Joanna Buoniconti

Joanna Buoniconti CONTRIBUTED


Published: 03-04-2024 4:47 PM

As readers of my column are well aware, I tend to spill my guts — about what’s currently going on in my life — in the ink on this page for all of you to see, and fair warning this is going to be another one of those. I have been wanting to write this column for a little more than a year, but I wasn’t in a good mental place to talk about it until very recently.

In order to tell the full story, I first need to backtrack to October of 2022. I had woken up earlier than I normally do on this particular day because I had an informational interview with an editor at Scholastic. When I looked in the mirror as I was getting ready, I noticed that the left side of my smile was noticeably weaker: the left corner of my lips just refused to go up no matter how hard I tried to smile. I looked like I was sneering. That day, I truly didn’t think anything of it. I had just chalked it up to my increased fatigue level. I thought that muscle’s movement would surely return once I got more rest.

But it did not.

Still, this was only slightly disheartening for me because I knew I was coming due for my winter lumbar puncture, the treatment I receive for my condition. And because the left side of my smile had drooped slightly in the weeks before my previous injection, I assumed that getting my next injection would remedy the issue completely.

However, that injection, to my complete and utter devastation, did not fix my smile. Furthermore, the three injections that I have had since then haven’t restored my smile either. My crooked smile caused me to have more mental breakdowns than I care to admit in 2023.

My winter lumbar puncture always occurs during the weeks leading up to Christmas — because it has to take place within a specific window of time — and the inevitable resurgence of energy and strength that follows the injection has always been one of my favorite Christmas presents. But in December of 2022, when that medicine failed to bring back my smile, it was like a knife had twisted itself into my stomach.

My cousins and aunt and uncle from Texas came up for Christmas that year for the first time in four years. And while I was extremely excited to see them and visit with them, a heavy hollow feeling had settled in the pit of my stomach. What little self-confidence I had about my appearance was decimated even further. I didn’t want to be in the family pictures because I hated how my smile looked now. But being the innate people pleaser that I am, and because I didn’t want to bring any further attention to the issue, I didn’t make a fuss about being in the pictures.

Instead, I held back my tears as I looked at how my face had irrevocably changed and only let them fall when I was completely alone. I didn’t want to smile anymore. And I still have a hard time looking at those pictures now.

The condition that I have is progressive, which means that I have experienced many unexpected losses in strength and function. But this one was arguably the most devastating because of the sheer nature of losing something so outwardly noticeable and because it wasn’t supposed to happen. The entire point of my undergoing these painful lumbar punctures three times a year is to maintain my current level of strength and to prevent any further losses — like this one from happening.

This was the hardest aspect of it for me to cope with because none of my doctors could explain why it happened. Last March, when I saw my neurologist, who I have been seeing since I was 10 months old, and explained to him the newfound weakness, he assured me that it was normal and that the movement would likely come back with my next injection. Holding back my tears and the tremor in my voice, I asked him, what if it doesn’t? Being the Type A, goal-oriented person that I am, I desperately craved an answer. It, quite honestly, scared me because what could prevent me from losing other functions?

My neurologist looked me in the eye and gave me a vague answer, in lieu of delivering the harsh truth that he didn’t have an answer. A fresh bout of tears sprang into my eyes as I processed this information and a surge of frustration washed over me. It brought me right back to the dark mindset I had a few short years ago, when my doctors told my mom and me repeatedly that they had nothing to help me while I was growing progressively weaker by the day. I wanted to say to him: how could he not know? How could he look me in the eye and nonchalantly tell me that my smile might come back? Instead, I took a deep breath and thanked him for his time.

I was already so self-conscious of how my condition had affected my body, and this was just another thing for me to cry about when I looked in the mirror. But, eventually, the tears stopped and a quiet acceptance took hold.

Yes, there are days, often after each injection, when I look in the mirror and get frustrated. On days when I’m more rested, my smile is slightly more even.

But while there are days that I absolutely mourn this loss, I’ve slowly come to learn that my smile isn’t gone. It’s just different.

Gazette columnist Joanna Buoniconti is a freelance writer and editor. She is currently pursuing her master’s at Emerson College. She can be reached at