A couple of weeks ago, I experienced the telltale sign of getting sick. But being the optimist that I am, I hoped that every instinct in my body was giving an inaccurate warning sign.
I hate being sick, which to be fair, no one does. Because it is a miserable time for anyone, but it is a special type of torment for anyone with a chronic condition. And it is a twisted sense of irony because it feels like I’m constantly battling one infection or another, lately.
Back to the topic at hand, how the latest illness began.
I had a tickle in the back of my throat that started grating on me on Tuesday evening, and in the middle of the night, it became exponentially worse. My BiPap mask had slipped from its meticulously placed area on my face, which causes the machine to think that something is impacting the mask’s airflow — even if it’s only slightly off-balance. Then, it proceeds to push more air at my face. This happens semi-regularly, and while the feeling of being suffocated by air is enough to jolt anyone out of a dead sleep, it is more of an annoyance than anything.
This night, however, the stakes were heightened because the aforementioned tickle in the back of my throat had now escalated to a full-blown sore throat. This caused my already narrow airway to become narrower. As a result, I was jolted awake, gasping for air, yelling out for my mom to get the mask off of my face so I could breathe fully again. Even though my mom’s room is right next to mine, and she sleeps with a baby monitor next to her head, she is sleeping. So it often takes a minute or two of me calling out for her to wake her up, because even though I can yell pretty loud, my already-soft voice can become very muffled when I have a mask on my face.
Normally I can withstand calling for my mom for several minutes, but this night I knew I didn’t have the luxury of a lot of time. As I lay in the dark for probably two minutes, frantically calling out for my mom, it felt like hours, honestly, as the word became harder and harder to force out.
Thankfully, my mom came into the room and got the mask off me in record time, as I lay there shaking and trying to catch my breath. There is nothing quite as terrifying as feeling alone and helpless, with a sprinkle of being seconds away from not being able to breathe.
It’s a concoction that would make anyone question their existence at four in the morning, and it’s one that I wouldn’t wish on my worst enemy.
This would just be a glimpse of the fresh torture that the next week would bring.
On Wednesday morning, I woke up after a grand total of four hours of sleep with a low-grade fever, a horrible sore throat, and an elevated heart rate. This is now the part where I want to say that having a cold for anyone — regardless of whether one is able-bodied or not — is a nightmare. But when you have a chronic condition, it is a special breed of bodily torment.
For the average person, a mild cold means a fair amount of bodily discomfort, maybe some coughing and sneezing. But nothing life-threatening.
When my latest illness had fully progressed, the low-grade fever caused bouts of tachycardia, which made it difficult to breathe and brought on nausea. Then there is the influx of my extensive respiratory routines to keep the increased saliva out of my lungs. It’s an exhausting process considering that a cold can linger in me, anywhere from two weeks to a month.
And this illness wouldn’t have been as harrowing, if I did something to bring this illness upon myself — such as going out in public without a mask on, which is something that I haven’t done in approximately nine years. The last time that I had gone inside anywhere was at the beginning of November, when I had had a plethora of doctor’s appointments at Boston Children’s Hospital. Since I got sick approximately a week and a half after those appointments, it is likely that I was exposed to something there.
It is more likely that I was exposed to the infection by someone else. But I’m learning to accept things that aren’t in my control. And focus on the direct things that I can control.
As I sit here typing this, with my pink Christmas tree glowing next to me, I’m filled with gratitude for coming through all the challenges I’ve faced this year — relatively unscathed. I’m also reminded of the fact that this is part of the nature of SMA, I spent my childhood battling a lot of severe infections and then my health was stable for a few years. And this is just another rough patch.
Because every time I recover from an illness, there is nothing that makes me more grateful than the ability to breathe clearly after hearing my own saliva reverberating around in my lungs for weeks.
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 columnist@gazettenet.com.