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

Tag: swimming

Swimming Lessons

Yesterday marked the last day of the 2021 Olympic Swimming Trials. My family and I have been watching it throughout the week, eager to turn on the tv and dive into a world we no longer inhabit. 

Swimming was a large part of my childhood but it was an even bigger part of my family. In fact, it’s how my family came to be: my parents met at a swim meet. My dad excelled on the high school swim team and my mother was born a water bug. Growing up, I watched her direct a swim lesson program, teach lessons to the neighbors at the local pool, coach on a club swim team, and even petition for a local natatorium. For my mother, water is a magnet and she can’t resist its pull.

My middle brother swam briefly before switching to basketball and my oldest brother competed nationally before going on to swim in college. I myself swam for ten years on club and summer league swim teams, but halfway through high school, I left to pursue musical theatre. Swimming was a rite of passage shared by every member of my family, and we each have our own unique relationship with the sport.

A picture of my dad and me at a swim meet.

Watching the Olympic Swimming Trials has brought me back to my swimming days, which could also be considered my pre-POTS days. They were the days of boundless energy, of two hour swim practices and the sweaty dry-land conditioning sessions that followed. They were the days of eating whatever I wanted, of killing time on deck with friends, of giggling underwater and fiddling with my goggles on the wall as my coach yells at me to keep swimming. I never loved swimming enough to commit to the sport the way others have–the way my oldest brother had–but there was enough love to look back fondly on the memories, which is what I’ve been doing a lot of lately. 

I’ve swam laps at the neighborhood pool twice this week, mostly to keep up my POTS treatment but also to pretend I am an Olympic swimmer (no shame). Swimming is actually great for POTS because it’s horizontal exercise. Plus, the pool water helps me get some sun without overheating. Major win! My olympic fantasy collapses after 100 meters in the pool however, when I come up gasping for air and realize how much distance lies between my daydreams and the swimmer I am now. 

In passing, I mentioned to my mom how I can’t wrap my head around the fact that at 15 years old, I swam an average of 7,000 yards at 2 hour swim practices, 5-6 times a week. Sometimes, I had swim practice twice a day. And although I was certainly ravenous and ready for a good night sleep afterwards, my tiredness was minuscule compared to the exhaustion I experience from POTS. 

“I took my abilities and accomplishments for granted,” I told my mom, whilst feeling compassion for my 15 year old self who couldn’t possibly understand. She didn’t know what she could lose, what she would lose in time, and the privileges she’d one day learn to live without. 

A picture of me diving into the pool for a relay.

The memories of what it’s like to be normal, to go to swim practice and stand in the shower and still have energy left over, flicker in my mind briefly before quickly fading away. They’re like a name I can’t remember but lives on the tip of my tongue, or like a person that looks familiar but whose face I can’t quite place. They are a sketch of my old life, a rough outline but nothing more. The memories are my childhood, the majority of my life, yet they are so hazy that I question whether or not they were a dream. 

Last Thursday, I stopped by the local tax office to pick up my permanent disability parking placards. They’re mostly for school, so that I can park in disability spots closer to classes and reduce my amount of walking across campus, but they’re also for flare days or gigantic, Texas-sized parking lots. It felt surreal to hold them in my hand and recognize they were prescribed for me, not for my grandpa or anyone else, but me: the same girl who swam two hour swim practices six times a week. Plus dry-land.

There’s no shame in a changing body or having disabilities and limitations. There’s no failure in using a disability parking placard or any other form of accommodations. Yet as I held the plastic placards on a steamy Texas afternoon, I wondered how many other people felt like I did: shocked to be acquiring these blue signs much sooner than expected. 

I thought of all the other POTS patients like me, who lived active, athletic childhoods before they were debilitated by chronic illness. Are their hearts also filled with grief for all they’ve lost? Are they too wandering around in their post-diagnosis life, dazed and confused and maybe even a little embarrassed, wondering where that little sporty kid went and if they’re ever coming back? 

Picture of me as a kid, standing behind the block before my race.

Thanks to a year and a half of physical therapy, these days I feel strong. I can go out dancing with friends, complete grocery shops with no problem, and spend over an hour in fitting rooms, trying on dress after dress after dress. In many ways, I feel the healthiest I’ve ever been, even if I do still have limitations. But feeling my strongest and most vibrant whilst picking up disability parking placards makes that whole experience even more confounding. 

In some ways, I wonder if my time as a swimmer equipped me for the challenges of chronic illness. Through swimming, I gained grit, endurance, and resilience. I learned how to keep pushing when the set got hard and my heart was pounding and all I wanted to do was quit and float in the middle of the pool. When the coach wrote a set on the board that looked entirely impossible, I understood nobody could finish practice for me, that I’d have to just keep swimming, no matter what. 

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.

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