Tag: healing Page 1 of 2

It’s Wednesday, which means that it’s either life as usual or I’m headed to the infusion center. Today, it’s the latter, and I’m in the passenger seat gulping water and squeezing a stress ball, hoping both activities will allow the nurse to find a vein on the first stick.

For almost 7 months now, I’ve been receiving the drug I did well on in the clinical trial–IVIG. My mom drives me to every biweekly infusion for three reasons: firstly, she is kind. Secondly, if parked for 4 hours in Texas, the car will be hotter than a sauna in hell. And thirdly, in 4 hours, I will be too sleepy to drive myself home.

As I settle into the cush infusion chair, the nurse asks if I brought anything to work on today. It takes me a moment to remember that I didn’t, that I no longer have papers to write because I’ve finally completed my degree. When I tell her this, I learn that she went to UT for her undergrad too. “Best 5 years of my life,” she said.

I am the elephant in the infusion room. Every patient is older than me, some by 60 years. Before receiving our medications, the nurses always ask us to confirm our date of birth. I can’t help but feel self-conscious saying the year “2000” aloud.

Two infusions ago, I finished reading Tales of the Jazz Age, a collection of short stories by F. Scott Fitzgerald. The first story was my favorite, “The Curious Case of Benjamin Button.” It tells an imaginative tale of a baby who is born an old man and ages backwards. As the patient across from me tells the nurses about the challenges of growing old and developing more and more ailments, I can’t help but think about how my life is the reverse of hers: how I’m young and my doctor tells me that my condition might actually get better as I get older, when my immune system (hopefully) calms down.

Am I Benjamin Button? Is this what it feels like?

A picture of my copy of F. Scott Fitzgerald’s *Tales of the Jazz Age*.

After I’m unhooked and discharged, I walk to my mom, who is waiting for me in the car with the AC on full blast. On the way home, we pass the arena where I graduated high school. I point it out, and we remember. Now, 6 years later, I’m graduating college.

Anyone who’s been reading this blog (and by the way, thank you) probably knows that the past several years have been bumpy for me. I’ve really enjoyed my time at UT, yet I can’t say that college was the best years of my life. In fact, much of my earlier experience was quite traumatic–starting college out-of-state only for my health to deteriorate and be thrown into the adult medical world, alone and 800 miles from home.

It’s painful to remember where I started and what I lost along the way. But reflecting on the past also makes graduation even more meaningful to me, because of how often I doubted whether I’d ever see this day.

My graduation was a practically perfect afternoon. Miraculously, Texas had a mild (emphasis on mild) cold-front, and the weather was lovely–not too hot for May. All of my close family were able to attend, and I snagged extra tickets for my brothers, who made it back from their Boy’s Trip just in time.

The ceremony for English and History majors took place in an auditorium on UT’s campus. Funnily enough, though the official colors of UT Austin are white and burnt orange, the colors for the ceremony were the official colors of my previous college: blue and red. In fact, several of my classes as a musical theatre major were held in auditoriums. As I sat next to my UT classmates, I felt like I was in two places at once.

A picture of the English and History graduation ceremony at UT.

I knew that as part of the ceremony, I was to walk across the stage and receive my “diploma” (the real documents are mailed afterwards…), but I underestimated how weird that would feel for me. As my row lined up backstage, I stood in the darkness, shocked at how strange it was to be back here again. It was both familiar and foreign, and also sad–I used to love this place, had once felt so comfortable in these wings.

I managed my entrance without tripping, and waved to my family in the back. Even with POTS, just having to walk was easy enough. No lines to remember, no dance numbers or songs.

After the ceremony, my family and I took pictures at the UT tower. For a brief moment, I time-traveled back to when I was a freshman, sitting near Belmont’s bell tower. I’d always imagined I would take pictures there when I graduated.

I’ve been thinking a lot lately about whether our lives are fated, and how much say we really have in the people we are. A few days before the ceremony, I stumbled across a picture from my high school graduation. In it, I’m standing next to my grandma, holding my grad cap, which I had decorated with the name of Belmont inside the shape of Tennessee. I’m smiling at the camera, thinking I know exactly how my life is going to go. It wasn’t until recently that I noticed my grandma is holding a book by Virginia Woolf, a writer I had not yet read and would later become my favorite class as an English major at UT.

A picture of me and my grandma at my high school graduation.

Life is unpredictable, absurd, cruel, and beautiful. At many points along this journey, I got woozy from all the twists and turns. For a stretch of time, hope was hard when all I saw was darkness ahead. But in the words of Chanel Miller, another favorite writer of mine, “You have to hold out to see how your life unfolds, because it is most likely beyond what you can imagine. It is not a question of if you will survive this, but what beautiful things await you when you do.”

At UT, I got a second chance. I learned there is life after loss, and I discovered that I had more interests than I knew, beyond music and theatre. As for what’s next, I’m working on finding a full time job so that I can have health insurance when I turn 26… And am hoping to land somewhere cooler, eventually.

Onwards we go.

Alli

On Rebirth: A Life Update

By howellsalli

On May 29, 2023

In Uncategorized

I graduated!! Not from college, though I am working on that. I mean I graduated from the clinical trial I’ve been participating in since September.

Picture of me sitting in the exam room during my final appointment for the trial

Run by Dr. Vernino at UT Southwestern in Dallas, Texas, this clinical trial is researching the effectiveness of IVIG treatment for autoimmune presentations of POTS. If you want a (very) quick crash course on IVIG and autoimmunity, read on: IVIG is a drug that’s used to reduce inflammation and prevent the body from attacking itself. Autoimmune diseases are conditions in which the body mistakenly damages its own healthy cells and tissues. IVIG is used for some autoimmune conditions, as well as other types of diseases.

IVIG stands for Intravenous Immunoglobulin. “Intravenous” means that the drug is delivered via infusion through the vein. As explained by this article, Immunoglobulins are “made by the immune system of healthy people for the purpose of fighting infections.” IVIG comes from plasma donated by thousands of healthy people, and the immunoglobulins (also known as antibodies) in this plasma are helpful for treating particular illnesses.

My mother had first told me about the trial in 2021. I put it off, thinking I didn’t need it since I was doing so well at the time. But then a flare came out of nowhere in the spring of 2022 and changed everything. On the first day of Spring Break, I came home from a doctor’s appointment that would become the first of many and I saw a post on instagram from someone in the trial. They were chronicling their experience participating in clinical research and explained that the trial was still enrolling patients. They encouraged people to apply.

Even then, I made excuses. “I want to finish this semester.” “I don’t want to come off my meds for testing.” But stumbling upon the post felt like fate somehow, and the trial lingered in the back of my mind as spring turned into summer.

Summer 2022 turned out to be a summer from hell–literally. For 21 consecutive days, temperatures reached above 100 degrees fahrenheit. According to DFW Weather News and Blog, in total, we experienced 47 days of over 100 degree heat. And relief from rain was scarce.

Since my symptoms worsen with heat, my health declined over the hot weeks and my independence dwindled again. I sublet my apartment for the fall and moved back home. I stepped down as club co-president and applied for my university’s disability course-load reduction. My “toolkit” of coping mechanisms (salt, fluids, current meds, exercise, acupuncture) no longer fixed anything. It was like a film I’d seen before, back in 2019, and even though I knew more about POTS than I did before getting diagnosed, I felt almost as helpless as I did then. I didn’t know what else to do, except for one other option. At this point, the trial was no longer at the back of my mind; it was front and center.

Because of the summer heat, I tried IV fluids. They were helpful, but I still struggled to manage my symptoms.

I spent weeks going over my pros & cons list. I had daily conversations with family members. “Should I reach out to the trial coordinator? Can I handle all the travel involved? How do I know what the right decision is?” At the time, I thought I was searching for an answer. But looking back, I see that I already knew my answer was yes, I wanted to do the trial, and that those weeks were really spent convincing myself not to yield to fear and doubt and worry. I wasn’t trying to make a decision, I was trying to accept my decision.

I sent an email to the coordinator and for weeks, I heard nothing. “I guess it’s really not in the cards for me,” I thought. “Maybe they’re no longer enrolling.” But still I carried my phone with me everywhere; I kept the ringer on. I was anxious that they would call me when I was embarrassingly unavailable: on the toilet, or taking a shower. Then one afternoon, around 2pm, my phone began to vibrate. I swear, I knew it was Dallas before I even looked down.

They squeezed me in in September, on my lucky number, the 22nd. “You came at the perfect time,” they said. “We only have a couple of spaces left.”

My first appointment was screening for the trial, and I underwent a series of tests and assessments. They listened carefully to my medical history; completed autonomic testing, which consisted of a tilt table test, QSART sweat testing, an ECG, various breathing exercises, and pupil testing; blood work; skin biopsies; catecholamine testing; standard neurology exam. It was one of the longest days of my life, but also the most rewarding. The next day, they called me and told me I was eligible for the trial. I had my first infusion 2 weeks later.

In total, the trial consisted of 21 visits to Dallas for treatment and testing. I received two different medicines, IVIG and another drug called Albumin, which was intended to be similar to a placebo. Albumin is a protein that expands blood volume, which can be helpful for people who have POTS, but it doesn’t treat issues with the immune system like IVIG does. The trial was double-blinded, which means that neither me nor the research team knew when I was receiving each drug. The trial was split into 2 cycles, one cycle for each drug, and both cycles consisted of 8 infusions scheduled in weekly and biweekly increments.

Image of me sitting in reclining chair receiving medicine via infusion.

If this is sounding like a lot to you, you’re absolutely correct. This trial was a huge time commitment and aptly named: it certainly was trying. The only reason I got through this was because of the empathetic research team, who made me feel so well cared for; friends and family whose support made all this possible (I’m talking about you, Aunt Nancy); and of course, my superhero mother who was by my side throughout it all.

Throughout the trial, my mother was my cheerleader, home nurse, chef, and chauffeur. She was a constant source of comfort and positivity and a grounding presence in every difficult situation. I’ll never forget when we were leaving that first screening appointment, feeling absolutely spent from a long day of testing. My mom was standing at the valet desk, and I was sitting next to a television in the lobby, waiting for the car. Family Feud was on. “When you’re sick,” the announcer boomed, “nothing comforts you like your mother’s…” He paused for the participant’s answer. The options were A, love; B, touch; C, voice; or D, cooking. “E,” I thought, “the answer is E: all of the above.”

Image of me and my mom outside of UT Southwestern

Like my mom, my nurses were incredibly caring. During the first cycle, I had a hard infusion day. After a month of weekly travel, I caught a stomach bug and struggled to keep anything down. When I returned to the clinic for my infusion, my veins were shrunken from dehydration. The nurses struggled to place the IV.

After three unsuccessful tries to get a vein, my favorite nurse suggested a break. Helping me out of the reclining chair, she said she wanted to show me something. We strolled to the back window where potted plants sat on the ledge. There was a flower in full bloom, contrasting against the cold, industrial view. It seemed an unlikely place for life to grow, and yet perfectly natural. The neutral colors of the research floor made the flower’s petals seem brighter.

Staring at their makeshift garden, I was moved by how my nurses spent what little time they had not taking care of people to take care of more life. Nurturing seemed instinctive for them, almost automatic.

At my last visit, my favorite nurse gave me a parting gift: a plant starter to grow at home. I watched her pick small parts of the potted plants before she placed them in my hands. “Don’t tell Miranda,” she said. “This plant’s hers!”

Pictures of the starter plants given to me by my nurse

Participating in this trial has been healing in many ways. I’ve seen improvements from both drugs, though even more so from the second medicine I received. When I first started cycle 2, I got dizzy and saw spots in my vision just from walking up the stairs. Now, I can climb stairs, do squats, and lift heavy boxes with no problem. In general, I feel much more like myself again.

I still have some lingering symptoms, notably my finger tremors; numbness in my left foot; erythromelalgia symptoms (burning pain in hands and feet); some fatigue; and gastric issues. The medications didn’t fix everything, and it didn’t cure me, but all of the improvements I’ve seen make my illness much more manageable.

In addition to symptom relief, this trial has been emotionally healing. When I first started back in September, I felt almost too sick to be scared. But I was scared, and rightfully so. 2019 left me scarred from the long, grueling process that was my POTS diagnosis. For years, I was weary of making more medical memories.

But the care I received at UT Southwestern was attentive, compassionate, and kind. They made me feel heard, seen, understood, believed. Not only did this trial improve my symptoms, but it also helped heal these lingering emotional wounds. I’m forever thankful for this experience and opportunity.

I won’t receive the results from the trial until the research team reviews and analyzes the data for all the participating patients. The medications remain blinded until they finish this process, so I won’t know when I received each medication for another few months, at least. In addition to researching whether IVIG improves autoimmune neuropathic POTS, my doctor is also studying how long these benefits last.

I don’t exactly know what comes next for me and what my long-term care will look like. The data collected during this trial will likely help inform my treatment moving forward. Because IVIG is costly to manufacture and administrate, the medication is very expensive (reportedly around $10,000 per infusion) and can be difficult to get approved by insurance. The good news is, I was the last participant of the trial, so the research team is beginning to review the mound of collected data!

It’s been nine months of needle pricks, IVs, side effects, and 3.5 hour car rides. Nine months of diligently tracking my fluid intake and keeping a daily log of my symptoms. Nine months of change, fluctuations, surrender, of hope. Nine months can create a new person, can grow a new life. These nine months certainly changed mine.

The best way to describe these past nine months would be as a rebirth. As the medicine tamed overbearing symptoms, old parts of myself returned, as if resurrected from their grave. For the first time in a long time, I saw the me who loved to sing and play the piano. I greeted her like an old friend, picking up where we left off. “Please,” I urged her, “Won’t you stay a while?”

The nurse’s name has been changed for privacy.

You Are What You Wear: Superhero Edition

By howellsalli

On December 18, 2021

In Uncategorized

Even with my eyes closed, the fluorescent lights were bright–too bright. I would’ve tossed and turned, done anything to rid the restlessness, except for that I was exhausted, too tired to move. My body tingled, my muscles twitched, I lay still in the hospital chair. The nurses let me be.

I felt like I hadn’t slept in a year. I mean, I had, but when you wake up more tired than when you went to bed, does that really count as sleeping? Sleep should leave you feeling rested, refreshed; I hadn’t felt that way in a long time.

Eventually, I heard someone call my name, softly.

“Ms. Howells,” they cooed. They sounded a million miles away. I began to blink my eyes open, and found two white coats standing above me.

The ER attending and her resident were tall, slender, looming. Through the fog that swaddled my brain, I questioned whether they were real. The woman in the white coat spoke carefully, saying, “We’re so sorry, but there’s nothing we can do to help you right now. We recommend you follow up with your primary care provider and…”

I tried to follow to the rest of their words, but they were leading me somewhere that I didn’t want to go: more frustration, more disappointment, deeper despair and terror. I tried to keep my composure and nod at all the right times, but it was so hard. I wanted to go home. Not back to my dorm room, but home. I wanted to be anywhere else in the world but that overflow ER room with its needles and saline and doctors who couldn’t tell me what was wrong.

The mouths of the white coats continued to open and close, their voices coming in and out like radio static. I wanted to shut it off. The frequency was piercing.

As the attendee finished her final discharge instructions, her face softened and I watched her mold into a mother. At once, her fierce features relaxed and the secure command she’d worked years to obtain as a woman in medicine fell away before me.

“I have a daughter your age,” she spoke into the space between us. “It must be so tough going through all this in college.”

I was unaware that what she’d say next would anchor me in the approaching medicine-filled months. I didn’t realize that such a brief display of empathy would salvage my tarnished relationship with doctors and remain as proof throughout my diagnosis journey of real goodness amongst all the terribleness in life.

“You’re superwoman,” she continued, implying strength, “and you’re gonna change the world someday.”

Her kindness stunned me, startled me, snapped whatever shabby thread that was barely holding me together. It was like a flash of light, so bright and intense, I had to look away.

With my eyes to the floor, the physicians left and I broke apart in the hospital chair. Having lost the willpower to fight back, I released the tears that were already flowing. They covered my face like wounds, like war paint, like a shield. In my tears, I found my armor. In my vulnerability, I found strength.

…

This past Thursday was the two year anniversary of my POTS diagnosis. The day marked two years of progress and recovery, two years of healing and brokenness, two years of learning to navigate life with a fussy, dysfunctional nervous system. Last year, December 16th felt like a funeral. This year, it felt more like a birthday party, a celebration of strength reborn.

To honor the day, I dressed up as Superwoman. The costume felt significant not only because it links to the impactful encounter I had with an ER doctor, but also because it relates to two of my favorite poems written about disabilities: “Wonder Woman” by Ada Limón and “Going Blind” by Rainer Maria Rilke.

A photo of me dressed up in a Superwoman costume. I’m holding up a peace sign, to symbolize my 2 year anniversary of being diagnosed with POTS.

“Wonder Woman” by Ada Limón shares the story of a woman’s experience with chronic, invisible pain. After a discouraging ER visit, the woman spots a girl dressed as a superhero and is reminded of her own, “indestructible” strength:

“Standing at the swell of the muddy Mississippi
after the urgent care doctor had just said, Well,
sometimes shit happens, I fell fast and hard
for New Orleans all over again. Pain pills swirled
in the purse along with a spell for later. It’s taken
a while for me to admit, I am in a raging battle
with my body, a spinal column thirty-five degrees
bent, vertigo that comes and goes like a DC Comics
villain nobody can kill. Invisible pain is both
a blessing and a curse. You always look so happy,
said a stranger once as I shifted to my good side
grinning. But that day, alone on the riverbank,
brass blaring from the Steamboat Natchez,
out of the corner of my eye, I saw a girl, maybe half my age,
dressed, for no apparent reason, as Wonder Woman.
She strutted by in all her strength and glory, invincible,
eternal, and when I stood to clap (because who wouldn’t have),
she bowed and posed like she knew I needed a myth—
a woman, by a river, indestructible.”
“Wonder Woman” by Ada Limón

“Going Blind” by Rilke recounts the isolation of illness and how the idiosyncrasies of disability can access a world unreachable to the abled person. In the last line, the poem’s translation suggests that in some ways, having a disability is like having a superpower:

“She sat at tea just like the others. First
I merely had a notion that this guest
Held up her cup not quite like all the rest.
And once she gave a smile. It almost hurt.
When they arose at last, with talk and laughter,
And ambled slowly and as chance dictated
Through many rooms, their voices animated,
I saw her seek the noise and follow after,
Held in like one who in a little bit
Would have to sing where many people listened;
Her lighted eyes, which spoke of gladness, glistened
With outward luster, as a pond is lit.
She followed slowly, and it took much trying,
As though some obstacle still barred her stride;
And yet as if she on the farther side
Might not be walking any more, but flying.”
“Going Blind” by Rainer Maria Rilke

I’m a big fan of the way these poems showcase the inner struggles of illness that often go unseen. I love the way Limón and Rilke find power in debilitating circumstances and see strength in moments of weakness and vulnerability.

It’s taken me a while to uncover strength in my worst memories (and a lot of work with my therapist). For the longest time–two years to be exact–I saw only pain, tears, and terror when I reflected on my lowest moments. I’m learning that strength doesn’t always look how we think it should. Contrary to popular belief, it takes strength to let yourself cry, or to ask for help and receive it. Sometimes, strength can look like weakness.

In full disclosure, the Superwoman shirt was actually supposed to be a Halloween costume. It was to be a costume only I knew the true significance of, but when it arrived late on November 2nd, I had to reassess my plans. Instead of returning it, I figured I’d save it for a day when I needed some strength. As December 16th rolled around, the shirt felt increasingly more relevant.

The day before Halloween, an intern at physical therapy asked me if I was dressing up for Halloween.

“I’m gonna be a superhero,” I said. “Superwoman.”

Despite her mask, I could see her eyes crease into a grin.

“You already are,” she said.

Begin Again

By howellsalli

On October 24, 2021

In Uncategorized

Hi blog. It’s been a little while.

I wasn’t planning on taking a break, and I also wasn’t planning on having such an eventful summer. Two summer classes kept me busier than I thought I’d be, and I took my first solo trip to visit my brother in North Carolina. Traveling alone taught me that I’m capable of more than I believe, and through my physical anthropology course, I learned more about being human. Weeks later, when my uncle and grandfather passed away, I learned a lot about grief, too.

I learned that grief can be sneaky. It can show up in unexpected ways like stress, poor sleep, and sharp, short tempers. I learned that grief reveals as much about death as it does about life, and that in many ways, grief is like plunging the heart in frigid water. Once the initial, blinding shock wears off, the fierce cold intensifies each and every breath, reminding the body it is acutely alive.

In the midst of my grief, I started a new semester of school. With a heart stuffed with sorrow, hope, and longing, I stepped foot on a college campus for the first time in 2 years. Feeling more like a kindergartener than a junior in college, I navigated quaint classrooms and picked seats in rooms full of socially-distanced students. The ordinary had never felt so peculiar. In the excitement of a new school year and the heaviness of my grief, I had never felt so sad yet so hopeful at the same time.

Going back to school has been a fresh new beginning for me. I entered a new school with a new major and a body with a new baseline and limitations. Walking around campus with a backpack full of beta-blockers, I felt nothing like the freshman I was in 2018. Strolling underneath the verdant trees on campus, I’d almost forgotten how traumatic my prior college experience was. Almost.

Last Friday, as I made my way out of class, another student stopped me in the stairwell.

“Do you watch Grey’s Anatomy?” she asked, catching me by surprise.

It took me a moment to register that she was talking to me, and another moment to realize the weight her question held.

In an instant, I was transported to my freshman dorm room where I was limp in my bed, watching Grey’s Anatomy on repeat. Exhausted from the ER visits and doctor’s appointments I’d wedged into my full schedule, I used the television series as an escape, as solace. Grey’s Anatomy eased my initiation into the medical world, and some part of me cherished watching the fake doctors fight hard for their patients. In my fear and overwhelm as mysterious symptoms took hold, I couldn’t help but hope some doctor would do the same for me.

“I used to, yeah,” I managed.

“You look a lot like Jo. You know, the one who was Alex’s girlfriend.”

Under my mask, my face flushed and I smiled.

“I take that as such a complement, because she’s so pretty!” I said.

Photos of Camilla Luddington, the actress who plays Jo Wilson in “Grey’s Anatomy.”

We pushed through the heavy doors, ripping our face masks off as we plunged into sunshine. The humid air felt tangible as she asked me where I was from.

“You’re from overseas, right?”

“I’m not but my parents are, actually.”

Too stunned to do anything else, I smiled. In some way, it was like she already knew me. Like we were already friends.

We chatted for another minute before parting ways. I walked away, feeling a little dumbfounded by our conversation.

While her questions were fairly typical, and her comment a mere passing thought, what she said felt profound to me. It was a complete, full circle moment.

Immersed in my Fresh New Beginning, I naively thought my past couldn’t catch up to me. I thought what had happened in Nashville would forever stay in Nashville, and that as I healed, the hard memories would rest somewhere far behind me.

But as I drove home that day, I realized that even though the past is the past, we carry every moment of our lives with us, into the next. The part of me that was sprawled out on my dorm room bed, glued to episodes of Grey’s Anatomy and gaining awareness that an illness was beginning to wreck my life, walks with me on UT’s campus. She looks up at the same beauty in the sturdy trees overhead. She feels the same shimmering sunlight glittering upon her face.

That girl’s comment felt like a reminder to take note of where I am, how far I’ve come, and how much of my life has changed. Her words were like confirmation that I’m in the right place upon the right path and no fatal mistakes have been made. In her encounter, I found permission, encouragement, and guidance to keep going, to keep moving forward, to have faith in what comes next.

Sometimes I wish POTS had never happened to me. Sometimes I wish my life had never been interrupted by the pain, the loss, and all the grief it’s brought me. Without POTS, my life would certainly be easier, and if I could wake up tomorrow cured, I would in a heartbeat. But I also know that without this deep well of pain, my joy would be much more shallow. I wouldn’t know how lucky it is to stand in the shower because I wouldn’t know how much it hurts to have the ability taken away. I wouldn’t live my days with as much intention as I do, because I wouldn’t value my energy as a currency that’s finite.

In the words of Nora McInerny, “We don’t ‘move on’ from grief. We move forward with it.” And each day, as I load my backpack with books and salty snacks, I make some space for that exhausted, fearful freshman. She deserves this new beginning just as much as I do.

Swimming Lessons

By howellsalli

On June 21, 2021

In Uncategorized

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.

A Different Kind of “New Normal”

By howellsalli

On March 13, 2021

In Uncategorized

The sun sets and I journey upstairs to take a shower. I pull the shower head down, let it hang. I step into the tub, I sit. I didn’t used to shower this way; I used to stand and sing. Now, I sit in silence, listening to the water spray. It’s loud, louder than I remember. Everything seems loud these days.

Sitting in the shower has become normal to me. Preferred, almost, but only because it doesn’t exhaust me the way standing in steam does. If I had it my way, I’d be belting in home-made saunas like I used to, but with POTS and a heat intolerance, I’ve learned to adapt. To my bewilderment, I’ve found myself in the midst of what most people call a “new normal.”

I’m not the only one grappling with a ‘new normal’ right now. The phrase is plastered all over the internet, dominating news headlines, and I’d go so far as to say it was one of the most-used expressions of 2020, outshined only by the words “Zoom” and “unprecedented.” Today, “new normal” is used in reference to the pandemic and the various ways our lifestyles have changed–from face masks to social distancing, to diligent disinfecting and more. But “new normal” isn’t a novel phrase, or reserved solely for this covid-19 era. It’s a phrase that’s also popular in the world of chronic illness and that I’ve come to know very well.

A photo of popular words used during the pandemic; image from John DeMont’s article, “The Plague of Pandemic Words”

In the months leading up to my diagnosis, I went on countless social media deep-dives. Plunging through hashtags of #POTS and #dysautonomia, I was desperate to find people in the same boat as me. I was hungry for advice from people who understood and were further along on the process than I was, with residency in what many call the “the other side.” I scrolled through post after post, my thumb turning numb, hearing variants of the same message: “You will find a new normal.” But would I?

At the time, these words meant very little to me. Without an official diagnosis or the resources for a way out, this advice felt flimsy, two-dimensional, like an aspiration forever out of reach. I could see its appeal: “new normal” comforts, encourages, heartens, and gives hope. It lives dependent on the promise of flexibility and versatility, reliant on the potential of resilience and grit. But as I stayed suspended in survival mode while I waited on a diagnosis, I couldn’t comprehend what it truly meant to move forward, or what that would look like, or if I would ever.

I heard this phrase yet again while meeting my dietician. A woman who lives with a chronic illness herself, she spoke from personal experience, assuring me that I too would eventually “find my new normal.” She promised me that one day, I won’t think twice about what supplements to take, that I would slow down and adjust to my limitations as needed, eventually settling into a slower speed and rhythm of life. She swore to me that with time, my foreign reality would become familiar, and that my debilitating symptoms would lessen as I learned to manage my condition. My dietician had no doubt in my ability to grow and adapt, believing with a steel-like, heartwarming conviction that ultimately, I’d prevail.

I was touched and a little amazed, though I confess I wasn’t truly convinced. I couldn’t yet fathom a future beyond my reality of crawling to the bathroom, or the sleepless nights due to unforgiving symptoms, or spending hours every morning trying to force my body upright. My future was still fuzzy to me, still too uncertain to discern, and it was distorted by my growing fear that I would never be well again. In February of 2020, a “new normal” seemed impossible to me, as likely as if you told me I’d been invited to brunch on the moon.

Theoretical picture of me having brunch on the moon. Image from Smithsonian Magazine

In a sense, the prospect of a “new normal” also felt undesirable to me. I didn’t want my reality to become normal, I wanted a refund or a time-machine; some way to transport back to my old life. To achieve a “new normal,” I would first have to accept my state of affairs and at the time, that seemed like an unreasonable request. The thought of my 2020 reality becoming normal repulsed me; I didn’t want a “new normal,” I wanted my old normal, and stat.

But fortunately, my dietician was right. The thirty pills and supplements I take every day are now as integrated into my routine as is brushing my teeth each morning. If I close my eyes, my mug of chicken broth after breakfast is just a unique cup of coffee, and has become no more unusual that pouring myself a cup of tea. With time, I have learned how to maximize my energy, designing my days around my body’s needs, and I’ve managed to carve a life out of the confines of both my illness and covid-19.

To the same degree, I’ve grown “immune” to the oddity of face masks in public. It no longer seems unusual to visit with my grandparents on the driveway as opposed to inside their kitchen, and I’ve gotten used to swapping out hugs for hand-waving, even though I do miss the former. I’ve seen first-hand from my experience with chronic illness that humans carry a remarkable capacity to adapt, so it comes as no surprise to me how we have adjusted to pandemic life: conducting classes online, building collections of reusable face masks, and finding ways to carry on when the life we knew was halted.

But even though I meet all the qualifications required for “new normal” status, if you asked me, I’d confess that my life still doesn’t feel normal. It’s more so that I have gotten used to its weirdness; nothing about healing from chronic illness in the middle of a pandemic feels normal to me.

An all-time favorite writer of mine, Suleika Jaouad, is also familiar with the expression “new normal.” Having been diagnosed with leukemia at the grand old age of 22, she knows first-hand how illness can sever a life, interrupting what was and forever altering what’s to come. In her 2013 NPR interview, she confesses, “I don’t like the expression new normal because I think life doesn’t really go back to normal.” She revamps the phrase instead, rebranding it as “new different.”

I like the concept of “new different.” I like the way it allows for radical, necessary change, and I like the way it accepts the present as it is, without any comparisons to The Before. The phrase “new different” allows our lives to continue changing as they inevitably will, while shedding the facade that we can ever recreate the past. Unlike “new normal,” “new different” welcomes change, opening the door to more and more life.

A photo of my mom, who helps me embrace my “new different.”

Two days ago, I went on a walk to check the mail. It’s a short walk, not too far, but on my way back, I kept walking. Up the street and around the cul-de-sac, talking my time while crossing the deserted road. I kept walking because it felt good. I repeat: I was exercising upright and it felt good. It was a sensation that in my depths of my illness, I was certain I would never have again.

It was liberating to have the choice to keep walking. To have the freedom to control the duration of my walk, instead of surrendering to symptoms that often make that choice for me. It was liberating to leave my limitations at home, to have a break from being chaperoned by relentless fatigue and dizziness. As I approached a stop sign, I thought to myself, “What an incredible moment this is.” I was acutely aware of how remarkable it was to be walking and well after everything my body’s been through. I felt strong and content, borderline euphoric. I felt like my old self again, only more grateful this time.

Like many, I made plans that shattered and crumbled to ruins while my life and reality fundamentally transformed. Like many, I’ve had to adapt and adjust to conditions that at times, were frankly unimaginable. Like many, I’m wading knee-deep in an aftermath, discovering what it means to find a “new normal,” or “new different.”

As I recover, it’s tempting to try to resuscitate the life I lived and the person I was prior to developing POTS. But illness, like other hard things, have a way of changing you to your core. And the longer I trudge through the aftermath, the more apparent it’s become that I will never again be the girl I was from before I fell ill. And maybe that’s the whole point. Maybe the point is not to find a new normal, but to find a new different, over and over again.

Flashbacks of the Future

By howellsalli

On February 20, 2021

In Uncategorized

It’s 8:30pm and I’ve just showered and put away my clothes. A year ago, I had to lie down after completing both of these activities. Less than a year ago, I had to take breaks whilst doing the latter. Fold the pants, lie down on the floor. Hang up the shirts, then back to the floor. Today I did both of these things, without surges of fatigue and weakness.

Healing takes time, but it is possible.

At times, I focus so intently on moving forward that I don’t let myself stop and reflect on the past. The act of reflection still feels risky, as if too much thought will teleport me back into those treacherous days. A part of me still feels skeptical about whether the progress I’ve made will last, but it’s not foolish, wishful thinking to say I’m doing much better these days. Even if saying so still feels like a hopeful aspiration, it is not premature, exaggerating, or anything close to a fib.

I’m still learning how to finally settle into this truth.

But as it turns out, I’m still really angry about what it took to get here. To get back to the place where I can hang up clothes and take a shower without exhausting myself. It took over a year of physical therapy, of dedicating and centralizing my life around a rehabilitation program. It took drastic changes in my diet, cutting out gluten, processed sugar, peanuts, fermented products, most dairy, basically a whole lot of food that makes life worth living. It took over a year of gastric distress, finding out what works and more disappointingly, what doesn’t.

It took one year of trying and failing, one year of the tiniest baby steps. It took one year of hoping, and not being able to stomach my numerous doubts. Before all this, it took two years of unexplained symptoms and a year and half of medical trauma. In total, it took three years of feeling unwell, every day of my young adult life.

It took too much to get here, and yet somehow, I still feel grateful.

A picture of me with takeout from P. Terry’s, a go-to restaurant of mine that accommodates my many food restrictions. #PTafterPT

I wonder how long my fury and gratitude will be able to coexist. When it comes to my health, I can’t seem to feel gratitude these days without also feeling eclipsing rage. The two are wrapped up against each other, tangled like a knotted necklace that only exasperates me.

I wonder if they’ll ever untangle or if they’re now forever intertwined. I’m hoping for the former, but I guess I’ll have to get back to you on that.

While it devastates me, all it took to get here, part of me feels a sense of pride. I fought like hell to rebuild my life, brick by brick, hour by hour. It’s worth mentioning I didn’t do it alone, that I couldn’t do it alone, and am privileged to have the resources I did. It takes a village to cope with chronic illness, and I thank every family member of mine, every friend who ever checked in on me, and every doctor, physical therapist, dietician, psychotherapist, and health professional that contributed to my care.

Yet in all transparency, the monotony of my current reality frequently frustrates and underwhelms me. While I’m ecstatic to be physically able to put away my clothes again, I feel discouraged about being cooped up inside, isolated within the same scenery I was in whilst being housebound over a year ago. I wish I were spending these days of better health going out with my friends, studying on campus, making the memories I missed out on, rather than continuing to stay cooped inside the same house my illness confined me to a year ago.

Yesterday morning I woke up to the news of a possible, serious gas leak. I was instructed not to use any appliances and was warned that even simply flipping on a light switch could be enough to prompt an explosion. (No biggie.) With the stealth of a ninja, muttering on repeat, “I will not turn on a light switch, I will not turn on a light switch,” I collected my things and adventured to my grandparents’ house, who conveniently live next door.

Double-masked and bundled up, looking around my grandparents’ living room, it occurred to me it’s been nearly a year since I last stepped foot in their home. Obviously, this wasn’t an ideal situation, as they haven’t yet had their second vaccine and I hadn’t completed a full, proper 14 day quarantine, but despite my nervousness, I was elated to see them nonetheless, and get out of the house for a change.

Picture of myself, exasperated by 2021’s unrelenting curveballs.

In one of my current classes at school, we recently read Story of Your Life, which is a short story by Ted Chiang, a popular science fiction writer. This story later went on to inspire the movie Arrival, and it deals with 2 concepts of awareness: simultaneous consciousness and sequential consciousness. I’ll try to spare you from all the elaborate, complicated details, but essentially, sequential consciousness is how us humans perceive our lives: one event follows the other and the future is always unknown. With simultaneous consciousness however, the past, present, and future are experienced all at once, so the future is not only predetermined, but it’s explicitly known ahead of time.

Obviously, it’s unlikely I will develop simultaneous consciousness in this lifetime and I am unfortunately doomed to live out my days with complete ignorance of the future. But every now and then, I swear I’m in that short story, getting glimpses of the future, of memories I’ve not yet made but will make, in time. They’re almost like visions (dramatic word choice, but let me live..) and in every one of them, I can see myself happy, surrounded by people again.

I had one of these “visions” while at my grandparents’ yesterday, and it filled me with hope that one day, my isolation will end. Sitting at their kitchen table, in the same place I have throughout my childhood, I experienced what can only be called ‘flashbacks of the future.’ I saw myself hugging friends, without masks, our smiles visible. I saw myself finally reuniting with family, embracing without hesitation.

It won’t be much longer until I am spending afternoons with my grandparents again, and when I do, it won’t be only when emergency strikes (spoiler: there was no gas leak). It won’t be much longer until I am seated at a restaurant table, laughing and dining with friends, or until I can travel and visit loved ones, until I am immersed in life again.

“It won’t be long now,” I say to myself over and over, until I run out of breath. It’s so close, I can feel it, and I swear I can see it too.

Say what you want, call it imagination or complete delusion, but I got a glimpse of the future yesterday, and it was beautiful, and real.

Hermit Season

By howellsalli

On February 18, 2021

In Uncategorized

A winter storm hit Texas last Thursday and it’s unlike anything I’ve ever seen. Temperatures have plummeted to historic lows, numbers of which are unheard of in my hot and humid neck of the woods. With over 4 million Texans suffering through power outages, my access to wifi and central heating feels like winning the lottery. I’m living every moment as if it’s my last with power and electricity because frankly, it very well could be.

I’ve spent the past three days huddled by electrical outlets while consuming alarming amounts of hot tea, mentally prepping for my next meal and its alternative, if need be. Classes are canceled, as is physical therapy, so I’ve been stuck at home like everyone else, racking my brain for ways to make the most out of this unexpected holiday.

There’s an odd feeling of familiarity within this situation, a sense that I’ve done this all before. And in a way, I have. Not with frosty terrain and winter weather warnings, but with an illness that made me housebound and a pandemic with lockdowns of its own. I’ve learned how to tolerate isolation, how to cope and even thrive within its catalog of restrictions, and at this point, I’ve become a seasoned hermit, a skill that’s boded me well this past year.

I find it almost amusing how POTS is no longer what’s keeping me inside these days. Now, it’s a historic snow storm, covid-19, and online classes that keep me locked up for days at a time. As I continue to recover and heal from chronic illness, there’s no “regular life” I can return to, no normalcy I can acclimate myself with or strive to finally attain. I know I said it’s “almost amusing,” but the longer I remain isolated, the words ‘frustrating’ and ‘lonely’ also come to mind.

Often, I joke that POTS prepared me for the pandemic, with all those days spent chained to the couch doubling as a weird bootcamp of sorts. I joke that I had a sixth month head-start on all my peers, building up the endurance required for a year of quarantine and isolation. And while it is true that POTS taught me how to be patient and nurture hope, covid-19 made my small world even smaller, and the limited contact I had with friends become even more scarce and constrained. These days, when I get cabin fever, it’s nearly unbearable; it’s as if I’ve been isolating in double time.

Picture of the snowfall from my walk yesterday, which was brisk in every way.

Spending most of my time at home, in a space that is comfortable and tailored for my body’s needs, it’s easy to find the outside world increasingly more overwhelming with its loud noises, busy freeways, bad drivers, and precariousness. At home, my meds and salty snacks are right where I left them, and anything I might possibly need is always within reach. I can pace myself easily, rest whenever needed, and I never have to worry about pushing my body beyond its limits. I feel safe at home, comfortable at home, and yet I can’t help but worry all this time in isolation is only prolonging and delaying my integration back into the “real world.”

I have to admit I’ve grown a little scared of the “real world.” When I developed POTS, I also developed an anxiety more acute than I’ve ever known. Once a daredevil child who flipped off diving boards without second thoughts, I’m now easily frazzled by things as simple as the local grocery store at peak hour. Small changes in my routine are enough to send me spinning, and while I used to consider myself a social butterfly, I now find myself sweating when I have to respond in the group chat. POTS has implanted a fear that runs deep within me, and now I can’t help but constantly anticipate the next flare or episode or trip to the emergency room. I can’t help but hate POTS for that, and all the other ways it’s altered me to my core.

I’m discovering recovery is as much of a mental endeavor as it is a physical one. It’s as if I’m having to rewire my brain, training it to trust my body and self again. Living with a nervous system that’s chronically hyperactive, I have to constantly coax myself out of “fight or flight” mode. Every day, I try to convince my body there’s no danger it needs to brace for.

As dispiriting as it can be to recover within isolation, it’s been a relief to watch the outside world slow down alongside me. Now, the world pulses in a rhythm much closer to my own, and it’s allowed me to take my time as I trudge through the gnarly work of healing. Now, I’m not the only one opting for another night in, becoming more and more socially awkward as the many days go by. Though I wouldn’t exactly call my situation “ideal,” I know it could be worse in an abundance of ways.

This time at home has allowed me to recuperate at my own speed, removing the temptation to “keep up” with everyone around me. It’s let me gradually ease myself back into a life that has deadlines and structure, while also giving me ample time to read and write–two things that sustain me. Because covid-19 has forced most universities to shift online, I’ve even returned to school as a full-time student, which happened sooner than I expected. As tired as I am of isolation, it’s provided me with a unique opportunity to focus on my recovery.

I know, eventually, there will be an end to all of this hermitting. The snow will melt, the pandemic will subside, and classes will be held in person again. I’d like to think there will be a day where I’ll forget how it felt to be this isolated. But until then, I’ll continue to make the most of all this time alone. (Which right now, if I’m honest, means watching Ted Lasso every night.)

May the power, WiFi, and central heating be with you,

Alli

Champion Park

By howellsalli

On January 16, 2021

In Uncategorized

Last week, I had an annual check up with my internist. She reviewed my yearly blood work before conducting a brief physical, doing what primary care physicians typically do during regular, scheduled check-ups. In retrospect, there was nothing to be nervous about, as the appointment was just for checking in, nothing new. But three hours beforehand, I felt that familiar fear creep out of hiding, the one that’s painfully festered throughout these past two years.

I seem to remember almost enjoying going to the doctor’s as a child. With their impressive supply of stickers, it was kind of hard not to. But I think it was because there was some element of it all that always felt like a field trip of sorts. I was never a regular there, at least not yet; I was simply a visitor who showed up once, maybe twice a year, mostly to confirm that I was still completely healthy.

In those days, there was no ailment I brought in that the doctor couldn’t quickly fix or understand. My pediatrician was for strep throat and flu shots, and I hadn’t yet traveled into the realm of Western medicine that isn’t designed for complicated chronic issues. In those days, I hadn’t yet developed finger tremors or muscle twitches that confused and puzzled my knowledgable doctors. I hadn’t yet felt the terror of staring down the long, dark road towards a diagnosis.

I miss that trust I used to have in my body, the trust that I’d swiftly recover from whatever came my way. I miss having ailments that could be fixed with a simple round of antibiotics.

These days, the doctor’s office fills me with dread. I guess that’s just what happens when you’ve endured enough medical testing. Oftentimes, I’ll try to reason my way out of the panic, telling myself things are better now, that I’ve survived the hardest part. Even so, my logic typically fails me; the memories are still too strong.

By now, I’ve learned to stop fighting against these feelings. With the help of my therapist, I’ve practiced letting them come and letting them go, giving them the space they need to arrive, as they inevitably will. It’s another exercise of surrender, a releasing of the illusion more commonly known as “control.”

On the car ride there, I felt the awaited dread rise within me. I tried to tune it out with my calm meditation music, but the two clashed in a minor key; the dissonance was striking. The dread felt thick and aggressive, like waves from a raging sea, and the salty water filled up my car, all the way to the brim. With shaky hands and a shaky breath, I tried my hardest not to drown.

When I arrived, I took a deep breath before stepping out of my car. I straightened my denim jacket as if it were my armor. Alone and scarcely armed, I walked through the automatic doors.

I arrived at the office, found a chair, filled out forms. Before I knew it, I was standing on a scale, then sitting in the exam room with a blood pressure cuff wrapped tightly around my arm.

It wasn’t long before my internist walked into the room, carrying a warmth that neutralized some of the chill from that afternoon. After a round of small talk, she reviewed my blood work and declared I’m essentially “a healthy young woman, with POTS”. My shoulders relaxed a centimeter.

She stood up, began the physical exam, but not before commenting on my reusable liter water bottle–a staple accessory for anyone with POTS. “I never leave the house without it,” I joked. “You’re doing everything right,” she responded, with kindness and care.

Throughout the past year, I’ve learned how to take good care of myself, but still, that sentence filled me with relief. The invisible mountain of bricks on my back disintegrated, drifting to the floor like a cloud of dust. I took a deep breath, mostly because she told me to, in order to check my lung function, but it was partly involuntary too; for the first time in that examination room, I could breathe again.

My internist released me from the appointment with the remark, “no torture for you today.” She was referring to blood work and other medical testing, and though it was a joke, it rang true. With the feeling I’ve paid, if not surpassed, my medical dues, I collected my bag and gigantic water bottle. I let the door of the exam room shut swiftly behind me.

Walking out of that appointment, I nearly strutted down the hallway. I felt strong and resilient, as if I’d just slayed a thousand dragons. I think, in a way, I did. With shoulders squared and a head held high, I relished in my quiet victory.

Climbing back into my car, I took a moment to regroup. Even on a good day, that office is disorienting, with or without new covid-19 protocols.

My internist’s office is the place where a doctor first spoke the name “POTS” to me. It’s the place I’ve returned to again and again throughout this journey, each appointment a major checkpoint along the way. My internist is also the doctor who coordinates all of my care, and though this seems like it would provide a sense of structure and stability, in reality, I’ve found it does the opposite.

Because POTS affects my nervous system and because the nervous system controls, well, pretty much everything, my collective symptoms of heart palpitations, dizziness, GI distress, and more, each require specialists of their own. It takes a village to treat POTS, from neurologists to cardiologists to gastroenterologists, allergists, and more, and my internist is typically the one writing the referrals, shipping me off to my many specialists. This contributes to a sense of disorienting, fragmented care, and I now see seven specialists to help manage my condition (not including my PTs, my therapist, and my dietician.)

That office holds so many different versions of myself, and each time I return, it’s like bumping into all of them at once. They fill the stuffy waiting room, taking up space in the chairs next to me. It’s almost as if they’re all frozen in time, suspended in their silent suffering. I want to reach out to them, lock eyes, hold their hand.

There’s the 18 year old who was struggling to recover from mono; the tired musical theatre performer wondering why she’s tired all the time; the scared college student that sensed something was wrong; the exasperated full-time patient who was desperate for a diagnosis; there’s the freshly diagnosed college drop-out, fumbling around in the dark. And then there was me: the one who’s found her footing, who made it to 2021 somehow.

It’s a lot to walk into, and it’s a lot to leave behind.

I wish I could tell each of those versions of myself that I have finally made it to the “maintenance stage.” That all the medical testing does in fact end, that she will find the answers she’s fighting for and learn to live in the unlivable. I wanted them to know there’s a part of the story where it really does all get better, that I’m in it now, the falling action, living in an ending she dreamed of but didn’t know how to reach.

In the driver’s seat, I attempted to collect my scattered thoughts, trying to settle into my new reality: the one where not all doctor’s appointments are traumatizing.

Putting the car in reverse, I drove to a nearby park where I celebrated with a short walk and sitting meditation. It’s a treat because I’m well enough to do this now, but also because anything is a celebration if you label it as one. I’m learning there’s a lot of power in that. Celebration is a powerful thing.

As I pulled into the parking lot, there was a boulder engraved with the name of the park. The sign read, “Champion Park.” I smiled to myself, chuckling a little, because it could not have been more fitting.

I am a champion, and I felt like one too.

In Another World

By howellsalli

On December 19, 2020

In Uncategorized

It was a Monday, I remember. Crisp and cool and cloudy. The gloomy sky casted a layer of darkness upon the house, but the clouds would later part to reveal a glorious winter day. Weather-wise, at least.

I started my morning with peanut butter and banana oatmeal, a meal notorious for making my POTS worse. It’s because of the carbs and unexplainable food sensitivities, but a year ago, we didn’t know this yet. We only knew that it increased my symptoms and we wanted all my various symptoms present for testing that Monday afternoon. So, breakfast was planned accordingly.

The directions said to shower before the appointment, so naturally, I obeyed. Doctor’s orders. I threw on baggy clothes as per requested, and when I was done, I crawled to the living room couch, where I blocked out the world with a Netflix documentary. Well, I tried to anyway but quickly failed as my eyes kept searching for the clock.

At noon, I was scheduled for autonomic testing. A medical technician in a room worlds away would conduct four series of tests to observe my autonomic nervous system. These tests would measure my nervous system’s ability to regulate sweating, blood pressure, and heart rate, hooking me up to various wires while strapped down to a Frankenstein-like table. All the equipment scared me, no doubt, but to continue to live without answers scared me even more.

Eleven o’clock came quick and my mother shepherded me to the car. When I made it to the front seat, I reclined to a supine position, my body’s favorite position, and turned the AC down as low as it could possibly go. My mother, who needs a jacket during August in Texas, zipped up her jacket and endured. She’s selfless like that, and I’m forever grateful for it.

When I arrived at the neurologist’s office, I seemed to be the only one who was ready. A four month wait will do that to you, so I watched office staff hurry about from a cushioned chair in the waiting room. It’s funny really, waiting four months for a doctor’s appointment only to sit in a room designed for more waiting. That’s perhaps the hardest part of any diagnosis journey, waiting in the wreckage of an old life, loved and lost.

I wasn’t necessarily hoping for a diagnosis, except at this point, I pretty much was. It was more so that I was tired of wasting away in the Land of the Unexplained. While waiting on referrals and medical testing that was apparently in high demand, my sporty build had left me as my unknown condition worsened. As my inability to tolerate daily life grew, I felt like a shell of my old self, a vibrant girl withering away. Once, while watching television, I looked down and couldn’t recognize my legs. The strength I’d built up from ten years of swimming had gradually waned away, and to my horror, my legs now resembled twigs.

Those days, I was always so close to breaking. One harsh gust of wind, and–snap.

Eventually, the nurse called me back, taking my vitals before wiring me up. When I stepped on the scale, I noticed I’d lost ten pounds and in a weird way, I felt almost relieved. It was strangely comforting knowing some of my loss could be documented, not only my loss of weight but of my vibrancy, strength, and energy too. The numbers would get written down, saved forever in my medical chart, serving as some kind of evidence that I was no longer all I used to be, that I had lost some of myself in this lengthy, cumbersome journey.

That’s perhaps the hardest part of any diagnosis journey, waiting in the wreckage of an old life, loved and lost.

As the testing began, I felt thumping so strong it seemed to shake me. I chalked it up to likely footsteps of a busy nurse out in the hallway, but after several minutes I wondered whether the thumping was coming from somewhere within. My heart, it seemed, was revolting. Its pounding was almost painful.

Lying there on the medical table, I braced myself for what was to come. The autonomic testing would conclude with a tilt-table test, the most brutal test out of the four. From my supine position, the table would be raised to simulate standing, and over the span of ten minutes my heart rate, blood pressure, and symptoms would be recorded, unless, the technician explained, I fainted. If I fainted, the test would be stopped prematurely. I didn’t know which outcome to hope for.

Graphic explaining how Tilt-Table Tests are conducted.

For an average, healthy person, a tilt-table test is no big deal. Their body adjusts to the pull of gravity by constricting blood vessels in the legs, properly sending blood back to the brain with only a marginal increase in heart rate. For a person with POTS however, this test is borderline torture.

Not even a minute into the test, I began to struggle against gravity. Sweating, shaking, unable to breathe, I squirmed beneath the table’s restraints as each of my symptoms were recorded by the technician. I called them out, plainly, the way he asked me to. “Dizzy. Heart palpitations. Shortness of breath. Fatigue.” Later, I would learn, my heart rate was soaring at 150 bpm.

Strapped down to the table, there was nothing to hold onto. I had to find something internally instead, some invisible inner railing that would support me and the weight of that afternoon. As my heart hammered on, I began to translate each pulse; every beat of my heart was my body battling to keep me conscious and upright. For a moment, I felt thankful. I have never felt my body fight for me the way it did that day.

Around minute five, in a moment I can only describe as dreamlike, I looked out to the wall I was now facing, only it wasn’t a wall. It was a window. It had taken five minutes before I realized that in the raising of the tilt-table to a steep 70 degrees, I was now directly facing a giant, glorious window. Before me, there was a golden, shimmering tree, and its leaves shook in the strong wind like confetti for a celebration. For a brief second, it looked as if the leaves were waving at me. From the depths of rock bottom, I said a silent hello.

Staring at that gold tree, a sense of calm swept over me. In the cold, clammy doctor’s office, I found a trace of light and beauty. It was an unthinkable event, unnatural even. And for the rest of my life, I will never forget the way that tree muted my screaming heart. It gave me a minute of peace in a moment of hell and even still, a year later, trees everywhere do the same.

We were told the testing would take about two hours, but in the end, it was closer to four. Walking into that office, I had little left other than slivers of hope and sanity, but walking out, I carried pamphlets and at long last, a diagnosis. After two years of living in utter fear and confusion, I finally had a name to my bizarre collection of symptoms: Postural Orthostatic Tachycardia Syndrome.

Not only did my diagnosis give validation to my invisible illness, but with it came a plethora of resources that were essential in my recovery. I now had access to physical therapists, dietitians, school accommodations, and more. I also now had an explanation for when people asked me, “What’s wrong?” While for some, a diagnosis feels like the ending of a life, for me it was more like a beginning, a chance to one day live again.

This time last year, I was strapped down to a medical table with wires and electrodes glued to my skin. It was yet another diagnostic test that would be my last in a soul-sucking series, and I was scrambling to hold onto my sense of self within the exhaustion and medical machines. It’s been a year now of officially living with POTS and I’m delighted to report I’m doing much better now. When I think about how I feel towards my progress and recovery, “gratitude” doesn’t even begin to cover it; it is relief at a visceral level, an infinite stream of thank you thank you thank you.

A picture of me from October 2020, walking around Centennial Park.

Last Monday, I drove up to the pond near my house. I like to go there a lot and, well, look at trees… On my way there, I passed my neighbors who were collecting their mail at the mailbox. The two young girls, maybe six and eight years old, wore the kind of matching, neon jackets that only young children can pull off. They jumped up and down with glee, ecstatic about a simple errand shared with their mom. It was a moment that moved me to tears, but not in the way you’d think.

For a split second, I imagined them all grown up and strapped down to a medical table. Unable to hide my horror at the thought, tears poured down my cheeks as I (dangerously) unraveled behind the wheel. So clearly, I could see them hooked up to wires, awaiting a tilt-table test in all-consuming fear. I pictured their mom fidgeting out in the waiting room, wondering how she and her baby girl wound up in a neurologist’s office on a sunny Monday afternoon.

It’s possible those girls might get POTS one day, too. I hope to God they never do.

But if they do confront fates similar to mine, I would want them to know it gets better. It gets a whole lot better, even when it’s still hard. I would want them to know they’ll never believe how strong they will become, or how much joy can be found in the simplest, smallest things. I would want them to know this illness will change them in every possible way, and although they might resent that for a little while, eventually they’ll learn it also sets them free. More than anything, I’d want them to know about hope. How it saved my life and has the power to save theirs too.

If I could, I would tell all this to the version of myself strapped to that tilt-table, too. I’d kneel down to the side of that Frankenstein table, holding her hand through all she is about to endure.

In another world, I do.

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

Tag: healing Page 1 of 2

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Champion Park

In Another World

Tag: healing Page 1 of 2

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