A blog about my experience with chronic illness and finding hope in the darkest days

Month: August 2020

We’re All In This Together

“What team?”

I hope you said wildcats.

Don’t know this reference? Why, that would be the one-and-only, iconic line from legendary crowd-pleaser and my personal childhood favorite, High School Musical: A Disney Channel Original Movie.

Gif of High School Musical cast jumping in graduation gowns.

Still confused? Well, I started my fall semester this week and the mild first day of school vibes on Monday had me rising a thick blue wave of nostalgia. High School Musical was a childhood staple of mine, and I walked into every school year secretly wishing it might reach the grand expectations set from the revered Disney trilogy. I never did get the tasteful cafeteria flash mob I was after (although I was a participant in multiple zombie flash mobs for my theatre department’s Halloween fundraiser. Not exactly the same thing…), or the angsty teenage romance with Zac Efron I’ve been wanting for years, but that’s never dulled my love for the iconic High School Musical movie. Or Zac Efron. Let’s be real.

Monday was easily the weirdest first day of school I’ve ever had, and if you would’ve told me nine months ago I would be beginning my sophomore year of college entirely online in the midst of a pandemic while battling POTS, I wouldn’t have believed you. Partly because there was a part of me that was truly terrified I’d never be well enough to return to school, but also partly because a pandemic? Really? No way. (Yes way, unfortunately.)

As I mentioned above, all of my classes are online this semester due to COVID-19, so the first day of school felt anticlimactic to say the least. Logging into an online seminar in the quiet of my childhood home doesn’t quite have the same effect that walking into a crowded, chatty classroom filled with new students and old friends does. As far as kickoffs for a new school year goes, this was easily the most underwhelming.

When I close my eyes, I can still remember my many ‘first days’ of elementary school. I can still smell the new Expo markers, the freshly sharpened pencils, the melting pot of scents that was the school cafeteria at lunchtime. I can still taste the Goldfish and fruit snacks that were tenderly tucked into my lunchbox, can still feel the peanut butter sandwiches on soft white bread glued to the roof of my mouth. Still, I can faintly hear the dull fog horn of the school bells, the squeals of children on the recess grounds, the rattling clatter of pencil boxes before they got worn and broken from careless use. These memories fill me with a heavy sense of warmth, and they’re the equivalent of a blanket wrapping around me on a winter night.

In these memories, I was fully healthy and able. In these memories, I ran around playgrounds and the school gym, dashing to and fro choir, orchestra, and theatre rehearsals, comfortably on my feet. Minus my senior year of high school, my time spent in primary and secondary school are mercifully untouched by chronic illness. I had not yet been knocked down by the beast that its POTS, had not yet been held back, reduced, or broken. I miss these memories more than I ever thought possible.

It’s both distressing and a relief that my life wasn’t always this way, that I didn’t always live with symptoms of some sort, with daily fatigue and discouraging limitations. These memories fill me with both grief and gratitude, with both joy and heavy sorrow. In this week’s wave of nostalgia, I find myself aching to go back for a day, for an hour, for a brisk minute in my body from before. I never thought I would ever say this, but I actually wish I could go back to public school once more, merely to bask in the ordinary that wasn’t ordinary at all.

In a way, these memories feel like a gift from my past self, an offering of respite I can return to as I move forward. These days, I find myself searching for the past in my future, trying to catch a glimpse in my reality of a life where I’m fully able and free. These memories are like a baseline I am trying to get back to, and also a reminder of how good and simple life can be.

It’s been a year since I’ve been in school, and a lot has happened since then. I’ve gotten diagnosed, I’ve spent nine months in a physical therapy program, and I’ve traveled into the crevices within me that are deep and dark and roughly jagged. Enrolling in school again, even if only online, feels like a triumphant switch from full-time patient to part-time, and it’s exciting to see a life, my life, finally building upon the rubble.

But alongside this excitement is a heavy grief of all I’ve lost. In these trying days, I know I’m not the only one who feels robbed of the college experience I wanted or planned for. I know I’m not the only one who mourns over the life changes that rippled ruthlessly through the masses this year. To those of you crying hot, angry tears over the changed plans you still can’t stomach, know that I’m crying with you. To those of you working your hardest to salvage what’s left of your school year, know that I see you and I understand. To those of you who can’t help feeling robbed or cheated of the year they worked so hard for, know that I am here, fuming right beside you.

In the wise words from High School Musical: “We’re all in this together”.

Gif of High School Musical cast dancing to finale song, “We’re All In This Together”

Healing is Hard

Healing is harder than I thought it would be. Don’t get me wrong, when I first received my POTS diagnosis, I understood I was at the beginning of a long, windy road to recovery, one filled with bumps and detours and a tedious chain of obstacles. I knew this process would take time, patience, and an unspeakable amount of grit, that it would be far from easy and incredibly grueling. But I guess I unconsciously assumed that once I began feeling physically better, the rest of my troubles would wither away. I assumed that my biggest struggles were solely physical, so once my health improved, I’d be ‘all better again’. Lately, I am learning, this couldn’t be farther from the truth.

Up until a few weeks ago, I held a narrow notion of healing, one that revolved around a peace and mending of the body and mind, characterized by a centeredness and calmness while involving a hefty amount of therapy, meditation, and organic green juice. And while there is some truth to all of this, I’m learning that healing looks and feels different for each individual person, that it’s just as psychological as it is physical. Healing can be a long, snotty cry in your room, the act of doing something you’re scared to do, or giving yourself permission to feel emotions you’ve ignored or pushed away. Healing can be spending time with friends, feeling the warm breeze against your skin, or it can be the making of hard sacrifices, putting your health first yet again for what feels like the millionth time.

There is a part of me that was surprised to find that the process of healing is incredibly messy. In fact, for a while, I assumed I must be doing it wrong, as if there is any “right” or universal way to heal. I approached my recovery the same way I approach life, with an impulsive need to embody perfection. I wanted my uphill battle to be brisk and linear, free of any detours, slips of the foot, delays or distractions. I wanted my worst days to live behind me, to stay behind me and for good, and I wanted to catapult myself into wholeness and good health. When I first got diagnosed that warm December day, I wished to slingshot myself froward, to find some magical remote that would fast forward me to the good part, to the part where I’m all better again.

A gif of an Angry Bird being launched by a slingshot.

It’s easy to be mislead from the reality of healing when the process is sounded by words like “journey” and “inner peace” (not to mention the fact that these terms are almost always used alongside sparkle, heart, and star emojis). These misconceptions are reinforced when outsiders only see half of the picture, when insight comes in the form of staged photos of victories and celebrations and not the day in day out trudge that encapsulates chronic illness. Let this be your daily reminder that there’s always more to someone’s story than the snapshot you see. In the words of my favorite quote, “You never know what people have to go home to. Be kind.”

Over the recent months, I’ve learned that even as my health improves, feeling physically better is only an aspect of the healing process. The damage chronic illness does to the psyche runs deep, and it takes time to process the loss, events, and emotions that come along with getting sick. When I was at my worst, I didn’t even have the energy to form opinions on what I was experiencing (other than “this f*@*$&! sucks”…) because I was too busy trying to stay strong and salvage the scraps that were my life. Now that I’m doing better, all of these unfelt emotions are waiting for me, as if I’ve returned from a disastrous vacation to find my home infested with roaches.

As complicated as these unprocessed emotions can be, at the worst of it, my illness had a way of simplifying my life; when my energy was scarce, my priorities were clear. Meanwhile, my symptoms acted as a form of guidance, managing my schedule and dictating my days. Feeling tired? Rest. In pain? Lie down. Dizzy and nauseous? Head to the couch. The more constant these symptoms became, the more I got used to feeling that way. Being unwell became my new normal, and at some points, it was simply expected. Now that I have more energy, it’s almost an unusual sensation as for the past three years of my young adult life, I’ve been crippled by chronic fatigue. At times, it now feels like I’m traveling without a roadmap, or that I’ve acquired a lucky lottery ticket but don’t want to spend my loot too soon.

A picture of Homer Simpson, carrying the roadmap I wish I had.

The switch towards learning to live with my symptoms was, in a way, just as hard as being succumbed to them. Instead of surrendering, I had to pick up my sword and muster the courage to fight again. Integrating myself back into “normal” life is definitely harder than I want it to be, and it feels as if I’m walking into an unbearably bright summer day after spending sixth months in a cold, dark movie theatre. It’s reasonable to assume my eyes need some time to adjust to the light. After all, I’ve spent quite a bit of time fumbling around in the darkness.

The more energy that has returned and the less intense my symptoms become, the more possibilities there are on how to spend my days. With this newfound possibility comes a plethora of unknowns, and sometimes all the uncertainty can be frankly overwhelming. What will I do next with my life? Am I spending this energy wisely? Productively? As fully as I can? Will I do something meaningful with my improved health? Make something purposeful of this pain? The pressure to know these answers is heavy, and sometimes I struggle under the weight. The more progress I see in my recovery, the more pressure I put on myself to have my life all figured out.

Healing is hard. It’s harder than I thought it would be. It’s harder than I wanted it to be, and sometimes it’s harder than what I think I can manage. The good news is, I’ve made it through all my worst days so far (with an impeccable track record, may I add…). The bad news is, I’ve still got a ways to go with discomfort, difficulties, and unprocessed grief waving at me from a distance. I’m bound to catch up with them soon, and sometimes that tempts me to swerve off the recovery road, driving far away from the inevitable without ever once looking back. But other times like today, where I had a lovely morning at the pool, floating in the water and looking up at a clear blue sky, I think to myself “Look at how far you’ve come” feeling oh so lucky to be here, floating and alive.

There’s no denying that healing is hard, hard work. But some days, it’s beautiful too.

POTS Brownies

The other day, I hit 4500 steps. While this may not seem like a big deal to some, this is a huge accomplishment for me! For the past eight months, I have been slowly inching my way up to this number, so to finally hit my goal not only felt like a step in the right direction (pun absolutely intended), but a testament to my recovery and healing progress.

It’s been difficult to get these steps in during the summer because it is simply too hot outside, so I’ve taken after my dog and started pacing around the house. Every hour like clockwork, I get up to log my steps for the day, and oddly enough, with the COVID-19 stay at home orders/recommendations, my home has turned into a bootcamp of sorts. By the time everything opens up again and it’s safe to fully return, I’ll be entering the world with the strength to participate, resigning from my role of observer. Big cheers to that!

Why was my goal 4500 steps? Well, research suggests that women see health benefits beginning at 4400 steps a day (I did an extra 100 steps because I am an overachiever and memorized the wrong number…). To me, this number symbolized not only improvements in my physical strength and symptoms, but also represented a progression back to good health in general. I am on my way to becoming a fully abled, healthy human again and man, it feels good!

To put this all in perspective, eight months ago, I was averaging 800 steps a day. I couldn’t stand for longer than 6 minutes, I struggled climbing stairs, and many days, a simple walk to the bathroom was all that I could manage. The road forward has been daunting and painfully slow to say the least, but I’m so grateful for my team of doctors, physical therapists, psychotherapist and dietician for quite literally helping me get back on my feet.

To celebrate reaching this goal, yesterday I threw on my baking cap and whipped up a batch of ‘POTS brownies’ (minus the marijuana…). I found this gluten-free, dairy-free, and refined sugar-free recipe on TikTok and can confirm from personal experience that it is absolutely delicious! I will copy and paste the recipe and share it with you all down below.

Recipe:

1/2 mashed banana

1/2 avocado

1 egg

4 tablespoons of maple syrup

1/4 cup of cocoa powder

1/2 teaspoon of baking soda

Bake in oven for 15-20 minutes at 350 degrees, then devour and enjoy!!!!

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