Another New Normal
| This is the 552nd story of Our Life Logs® |
As people, we like to believe that there’s something called “normalcy,” normalcy referring to the general, acceptable structure of human life. It gives us familiarity in a world that’s constantly churning with change. But, I have to point out the problem with this idea. Sometimes, avoiding what’s different is just not an option. Sometimes, we’re forced out of our comfort zones—forced out of our normalcies—and into uncharted terrain that attacks every physical, mental, and even spiritual part of who we are. And you know—I won’t sugarcoat it—it sucks, and mostly because you never see it coming.
I myself have firsthand experience with that.
When telling my story, I’d have to say that things began pretty normal. I was born in 2001 as a surprise child to my parents and the little sister my big sis had always wanted. Growing up, I had a loving immediate family and a lot of my extended family lived nearby, too. Things were good at home, yes, but I’ll admit that I had some tougher times at school. I had severe eczema and, since kids can be cruel, to say the least, I was often the butt of others’ jokes. Throughout elementary and middle school, I did manage to make some friends here and there, but they were always the kids I had to wave goodbye to as the year came to an end.
As I graduated middle school, I looked excitedly to my next horizon: high school. Judging by books I’d read and stories I’d hear of making lifelong friends and amazing memories, I couldn’t wait to embark on what would be my last real adventure before college and the rest of my life. I even promised myself I’d let nothing ruin these years for me, no matter the teasing, no matter the bullies, no matter anything, really.
Perhaps that’s one of the reasons that, in 2016, the summer before my sophomore year, I hid the one thing that would steal those high school dreams away.
It was when I was fourteen that it all started going downhill. I was getting ready one morning when I noticed something was a little strange with my body, painful, hard little bumps under my arms. It couldn’t have been anything normal—it wasn’t—but it freaked me out too much, so I decided to just cover it back up and let it be. Whatever was going on with me couldn’t be all that serious…right?
Still, you can’t exactly ignore your entire body, no matter how many times you look away. It was like there was a little bell in my brain constantly going off, telling me, urging me, to stop and think about it for a second. But, by this time, my dad, who had gotten sick back in 2011, was rapidly getting worse. School was piling on the work, too, in that typical high school fashion. I already had a lot on my plate, and way too much to think about at this point.
In 2017, when my dad passed away, my childlike belief of “forever” that I once held was shattered. It was then I learned how some things like mortality simply can’t be realized until they happen right before your eyes. That’s something I thought about in the weeks after dad’s passing—how we can learn about things, know so deeply of their existence, and yet, unless it really, truly strikes you, it somehow doesn’t really exist.
Even while I watched such a fateful scene unfold, I kept my own secret tucked under my sleeves. There was simply too much to juggle for my family. But in the meantime, the weird things that I caught a glimpse of that fateful day morphed into something bigger. I thought about it constantly in back of my mind. I knew it was happening. How could I not? Every time I dressed, there they were—the sores, the wounds, the drainage—and they definitely didn’t belong. I knew that much.
As 2018 crept up on me, I noticed my body was different not only visually, but mechanically, too. I began to struggle to do things I once had no problem doing, simple things like using my own arms or taking a walk. It was then that I also began to realize that, if this kept up, I would miss out on everything I ever hoped to do.
I finally confessed what was going on to my mother and I was sped to a doctor, where I was finally given a diagnosis of hidradenitis suppurativa, or “HS.” Seeing it all down in front of me was like a confirmation of all the things my brain and body were so desperately trying to get me to understand.
Still, though, the worst was yet to come. A diagnosis was just a diagnosis. It was just a name for something that was getting worse by the day. By 2019, I could hardly walk two feet without feeling like I’d pass out. My arm usage dwindled to nothing; I couldn’t even shower.
In June of 2019, at age 17—and my breaking point—I was hospitalized, and found out I had a wide-range superinfection. If it had been just a little later than I was admitted, I might not have been around to tell this story, and honestly, back then, I thought I wasn’t going to make it!
While the children’s hospital I was at was actually pretty awesome and I had the long-distance support of my mom, my nana (my dad’s mom), the rest of my family, and some friends, there was still something that loomed before me.
Me, at the hospital.
Throughout my time in the hospital, I did a lot of thinking—and a lot of my thoughts always ended up in a dark place. Not only was I missing out on everything I had looked forward to, like a “Night to Remember” prom and the excitement of walking the line during graduation, but everything I had ever known—even my own identity—was completely different.
With this broken body, these gloomy thoughts, that tired face in the mirror…it felt like I was face-to-face with a new person. Whenever I looked at her, I felt the urge to introduce myself. “Hi, I’m Katie, and you…?” Then, I’d stop myself. She already knows, after all. She knows too well.
From the care and support I received from both hospital staff and my loved ones who came to visit once they were allowed, I was able to make a recovery. I still couldn’t use my arms like I used to, but I was dismissed near the middle of July the same year and was able to go back home.
My hospital bed.
To cope with the aftermath of all this, I needed a new hope, a new light in my life to add at least a little spark to what was so swiftly snuffed out through my HS. So, I looked to my calendar and found my hope five months away: in 2020.
After all, 2019 was a wreck. It was that slap in the face that I was now chronically ill and that I would be for the rest of my life since HS at present has no cure. Even after I recovered from my superinfection, I could barely do the things I loved let alone do the bare minimum that simply defined normalcy, like taking a shower before bed or just using my arms. All this, and I was just turning 18. I needed that little flame, that push that said, “Yes, there is something to look forward to. There’s something to rise from the rubble for.”
2020 wasn’t looking too terrible at first. My arm mobility fully returned, for one. I had plans to go out again with friends, attend their high school graduations, really catch up with them properly, you know? Amidst this new craziness, these small joys and expectations were all I had. But, when COVID-19 struck, when that word pandemic flashed on every phone, tablet, and television screen, it was as if everything had shattered before me yet again.
Yet, this time, it wasn’t something gradual or something I could just push to the back of my head. No, it was like a battering ram, crashing into my—and everyone’s—life, sweeping away everything that was meant to be. Meant to be, meant to be…everything that was meant to be simply dissolved. Again.
As I quarantined at my nana’s house, where I live now, I had a lot of time to think, just as I had at the hospital. Dark thoughts again clouded my head—did I deserve this? For my condition to only worsen from physical weakness and the new stresses brought on by COVID-19? For such big hopes to be brought up in my heart, then slammed down out of the blue and crushed to pieces?
Among those thoughts, though, a strange one happened into my head. “What if,” my brain deliberated one day, “you got hospitalized now?” And that’s when something hit me again—but it didn’t hurt this time. Yeah, what if I got hospitalized during this pandemic? I was in a life-or-death situation, after all. I had a chronic illness—a “high-risk” factor for the virus. It hurt my family deeply when I had to go into the hospital, but how would it have affected them if I had been recovering in 2020, knowing they wouldn’t even be able to come to see me?
It might sound weird, yes, but somehow, this thought gave me the littlest tinge of…hope. And, even now, though I was separated from those I loved and wished to spend time with, they were still…there. They were safe, guarding themselves, and waiting for the day we could all hug each other again with their masks off and virus-riddled worries cast away. I had my nana with me every day to enjoy meals and shows and random conversations with—and just a few taps away on a phone, I could still hear the voices of those I love.
So, yes. There are countless things that were meant to be for me—this year and in the past—things I can’t redo, things I missed, and things that have to be postponed indefinitely. But there are still things, in the future, that are meant to be, too. Even though they aren’t here now, even though I can’t even say when I may be able to experience them, they still lie in the future.
I’m alive, and I have things to look forward to. It doesn’t take away the pain of now, but just knowing that even the smallest things, like just visiting the Dairy Queen at the mall again, give me that flicker of hope. It’s the hope that there is again for the good things—they’re not gone forever. And, the biggest thing is, I’m alive. I made it.
This is the story of Katie Richards
A teen’s high school years are most certainly filled with ups and downs. But, during those years, North Carolinian teen Katie’s life was flipped upside down when she was hospitalized at age 17 and diagnosed with hidradenitis suppurativa (HS), a chronic illness that left her broken, physically and emotionally. Though the hospital was not all bad (it was awash with therapy dogs, for one!), life afterward was a struggle to accept her new condition, new identity…new life as she knew it. Amidst the newness, she had a ray of hope, and looked towards 2020 as a new beginning—then, COVID-19 hit. Though the pandemic brought on unique challenges, Katie also began to realize the potential of who she was—and what she had, despite it all.
Katie’s go-to quarantine outfit is a pair of comfy PJs (real clothes are for suckers). They’re her favorite outfit to enjoy jamming out to Taylor Swift in, and also to have a quick quarantine snack of cheese in. Though COVID-19 has been difficult, she will miss face masks; however, she is opting to wear them on days she isn’t feeling well, even after they’re no longer necessary. Countries who did that already had the right idea in her opinion!
This story first touched our hearts on December 18, 2020
Writer: Safiyya Bintali | Editor: Colleen Walker
#illness #chronicillness #HidradenitisSuppurativa #loss #comingofage #teenager #teen #overcoming #covid19 #COVID19story #USA