Living in 2023

Sometimes, I write my yearly reflection in December, as I process the year behind me and ready myself for the new one. Other times, when the year’s end is chaotic and flies by in a blur, I find myself pushing it off further and further. I guess I wasn’t sure what to say until now, but it’s all coming to me. Little pieces of tomorrow are falling into place and it is time for me to face the future, having spent far too much time on the past. In order to do that, I must pay 2022 one final tribute… before I throw it in the trash.

On January 1st, 2022, I turned 24 in Florida, where I was visiting my mother, whose husband had been hospitalized due to late stage dementia. It had been a long, complicated decline. We were there with her brother, as a family, but it was hard to be happy. I remember distinctly that I subluxated my shoulder that day and was in a lot of pain. As someone with health issues, this was nothing abnormal, but it still felt that with everything going on, it was a pretty terrible omen for the year.

Then, mid-January, my husband and I caught COVID-19 through exposure at my grocery job and had to quarantine for a while. It was very depressing at the time that my constant wearing of an N-95 hadn’t been able to protect me, even when it was never a given to start with. The illness itself was very mild, like a minor head cold, but even once I was over it, a persistent fatigue grew in me. I continued not to leave the house much, outside work. For the most part, I wrote it off as normal late-winter illness and depression, but I could feel myself spiraling into something much much worse.

It became clear to me and a select few around me that I was far from mentally healthy. I was paranoid, delusional, and on-edge 24/7. I thought everyone was against me. I took a week off work so I could attempt to heal, and even that didn’t help much. Mostly, I called out so I wouldn’t do or say anything that could get me fired. I felt trapped by my mental illness, knowing anywhere I reached for help would label me mad, force me to take medication, and/or keep me there against my will. So I hid it as best I could, until the winter began to break.

One day, I took a walk in the early spring, listening to Pet Sounds by the Beach Boys and taking in the reality that the winter was finally truly over. It’s hard to say whether it was the ethereal quality to the music, the lyrical content relating to mental heath, or simply the good weather, but I felt better, overall, from that point onward.

It wasn’t so simple as this, really… and yet it was.

With my mind calmed, it would only be a matter of time before my body would fall apart. The physical fatigue that had set in after COVID was only getting worse. I was starting to get tired in ways I never had been before, and when it felt like I had no reason to be. In May, I had a strange isolated episode of heart palpitations that really scared me, but all the tests came back negative. From that point onward, my tolerance for exercise slowly decreased and my overall heart rate skyrocketed. Within a few weeks, I couldn’t stand for more than 5-10 minutes without feeling like I was going to pass out. All the blood would pool in my legs. It affected every part of me: my heart, my lungs, my brain, my bladder. I couldn’t drive to work, because the strain of driving was too much and if I did it for too long I would start to black out.

I had no idea what was wrong with me, but I was starting to suspect. Tests kept coming back negative for the big bad things, which was good, but it meant no answers for me. I was getting desperate, because even though the medication I’d been prescribed to handle my high blood pressure was helping regulate my symptoms, it was still affecting my daily life. It felt like medical professionals were writing me off as a “nothing I can do” case. So, I reached out to my rheumatologist near my hometown an hour and a half away and drove all the way out there. I knew he was the kind of physician who knew what he was doing and respects patients, and he gave me the diagnosis that I had been expecting: Postural Orthostatic Tachycardia Syndrome, or POTS, on top of Ehlers-Danlos Syndrome, or EDS. At this point, doctors started to take me more seriously. I stopped hearing about how it’s “probably just anxiety” or “dehydration.”

Later, I would have one of my other physicians confirm this diagnosis. EDS, being a disorder of the connective tissue, which makes up most of your internal organs, explained my gastrointestinal problems. It explained my near-death experience with a lung collapse at age 4. It explained the pain and injury I’ve been dealing with my whole life, like that pesky subluxation on my birthday. It explained, of course, why after contracting COVID, I would develop POTS, which often occurs with EDS.

As someone with chronic pain for over a decade and joint hypermobility for my whole life, I have been seeking an EDS diagnosis for 4 years now. To get one so soon is in fact a rarity. Most patients with my disorder wait closer to 10. EDS is a very under-diagnosed disorder, and is far more common than most people know. My whole life, I had just been hoping for some clarity as to why I deal with a lot of the health complications that I do.

Still, it was in a less than ideal scenario. It was July at this point, and I was still sick, only very slowly getting better. My entire summer, wasted to illness. It was, well, depressing, but that would only be the tip of the iceberg. On July 30th, 2022, the world would lose my stepfather Jim, one of the most amazing men I have ever known. I don’t think I have truly processed his death, and I don’t think I ever truly will.

From that point on, it has been a little hard to get a good look at my life and everything going on around me. When you are diagnosed with a lifelong illness and watch someone near and dear to you slowly fade away from this world, you cannot help but acknowledge what never ceases to be true: we all get sick, and we all die. You start asking the questions. What am I doing? What do I want? How do I want to spend this singular life I have been given? One thing I realized about a month after Jim’s passing was that I was sick of working my grocery job for pennies, as much as I liked it, and was finally ready after 2 gap years to go back to school and finish my bachelor’s. I start as a junior in Geography at UMass Amherst in the Spring: Jim’s alma mater. I like to think he would be proud.

The holidays flew by in a characteristic mess of joy and stress. I think, for a lot of us, this was the first holiday season that truly felt “back to normal” in some capacity. Families gathered again. I went to a wonderful NYE party with some friends, and when the clock struck midnight, I turned 25.

It has already been a strange ride being 25. I didn’t think anything would change, but it has, somehow. I feel like an adult now, not a “young adult.” I’m no longer in the 18-24 demographic category. I looked in the mirror yesterday and I saw not a young girl, but a woman who looked like she could be a mom. It was jarring, but in a way, exhilarating. Getting older is step one on the way to getting old, and I’ve always wanted to get old. To get old, after all, is to live.

I am a high school dropout, but I have an associate’s degree.

I have multiple chronic health conditions, but I love to walk whenever I can.

I have mental health issues, but I am going to finish my undergrad.

Maybe it’s just because it’s finally hitting me today just how different everything is going to be once school starts. I’ve been nervous, hesitant even– how is life going to be, once it changes? But now I’m excited. I’m not so optimistic as to say that 2023 is going to be a good year, but I reckon it’s going to be my year.

So far so good, really, compared to last year.

Leave a Reply