The Unbreakable Hope

The air is crisp and the leaves are falling (somewhere else though, further north of Texas). Warm, autumn light settles softly onto everything, painting ordinary spaces golden. All food carries a hint of pumpkin spice, and Halloween costumes are magically coming together for the one-and-only Spooky Night. It’s October; it’s the best month of the year.

I’ve always looked forward to October, mostly because I love fall, but now, I have a new reason: October is Dysautonomia Awareness Month!

Dysautonomia Awareness Month was started 13 years ago by a nonprofit called Dysautonomia International (DI). The organization is dedicated to advocating, funding research, and providing resources for people with autonomic nervous system disorders in 50+ countries and 200+ cities worldwide. The founder, Lauren Stiles, has POTS and is a Research Assistant Professor of Neurology who focuses on autonomic disorders. With her background, Stiles ensures that DI is a trusted resource for accurate, evidence-based information on autonomic nervous system disorders.

Awareness months are informative, fun, busy, and tiring, but they’re important. For any condition, awareness can reduce diagnostic delays, improve resource availability, and promote compassion for patients within their communities. Awareness month is especially important for dysautonomia, because these disorders of the autonomic nervous system are widely under-researched, and too often, misdiagnosed.

Graphic of a clock explaining the average diagnostic delay for POTS is 4 years

I’m assuming that if you’re reading this post, you probably know me and have already learned what dysautonomia is. In case you’re new here, and have no idea what that word is or means (or how to even try pronouncing it), here is a brief overview:

Dysautonomia (pronounced dis-oughta’-no-me-uh) is a medical term that describes a group of conditions that affect the autonomic nervous system. Our autonomic nervous systems control all the automatic functions of our bodies, like heart rate, digestion, sweating, and more. When this system doesn’t work the way that it should, it can cause various debilitating problems. Some forms of dysautonomia are mild, while others are fatal, but all of these conditions can be incredibly debilitating.

Many people have not heard of dysautonomia and assume it’s rare, and some forms are. But new research suggests that over 6 million Americans live with POTS, a common form of this condition, which is more than the amount of people who are diagnosed with lupus, multiple sclerosis, and Parkinson’s combined. And yet POTS receives a fraction of their research funding.

On average, POTS receives $1.5 million dollars of research funds from the NIH. This might sound like a lot, but in comparison, “other diseases that are about as common in women as POTS, like multiple sclerosis and lupus, have received an annual average funding of $118 million or $127 million respectively,” as reported by The Washington Post. To break this down, out of their $47 billion annual budget, the NIH only spends 33 cents per patient on POTS research.

POTS is not life-threatening, like MS and lupus can be, but it is dramatically life-altering. Studies from Vanderbilt and the Mayo Clinic have shown that the level of disability seen in POTS patients is similar to the disability seen in patients with congestive heart failure, or on dialysis for end-stage kidney failure. 25% of POTS patients are so disabled, they’re unable to work or attend school.

POTS can be caused by different triggers, such as concussions, autoimmune diseases, surgery, pregnancy, and most notably, viral infections. At least 40% of POTS cases develop following an infection, so it’s not surprising that many people have developed dysautonomia after getting sick with COVID-19. In fact, research suggests the number of people dealing with POTS has roughly doubled since the pandemic, and will likely continue to grow.

Awareness is the first step towards more research and, hopefully, better treatments. At the moment, there is no FDA approved medication for POTS. Dysautonomia International has been funding more POTS research than the federal government, however, because of their tireless efforts, this is starting to change! NIH investment in POTS is increasing thanks to all the people who participate in Dysautonomia Awareness Month and have helped support this organization. In the 2023 fiscal year, the NIH funded 6 POTS research grants, which is double the amount of the previous year. With your help, we can continue to grow that number!

There are a variety of ways to get involved with Dysautonomia Awareness Month, which can be found on DI’s website and also in their recent webinar posted to YouTube. But to make things even easier for you, I have highlighted a few options below (with links!):

Join an in-person or virtual fundraiser

Volunteers for Dysautonomia International are hosting a 5k POTS Walk in Boston on October 19th. Don’t live in Boston? Doesn’t matter! You can join from wherever you are through a virtual registration option. Virtual participation can look however you want it to: making a donation, organizing a small walk with your family or friends, walking 5 minutes every day in October, or throwing on a turquoise t-shirt to virtually cheer on the in-person racers. Btw, in-person and virtual participants are eligible for fun prizes!
DI is partnering with Panda Express again this year for another virtual restaurant fundraiser! Order pickup or delivery from any Panda Express location nationwide on October 18th and apply code 925183 in the Fundraiser Code Box at check out. 28% of sales will be donated to Dysautonomia International!

Host an in-person fundraiser

Many restaurants, chains or local, offer fundraising opportunities. Check out their website or reach out personally to your favorite place to eat and see if they offer dine-in days, coupon programs, or fundraiser nights for charities and nonprofits. Do some good while eating good food!
Organize a POTS walk/run, bake sale, sports tournament, art night/festival, get creative! Fundraisers should be FUN, so pick something you like to do, and turn it into a fundraiser! You might try thinking of what communities you’re already a part of, and how they could help out with this cause.

Host a Facebook Fundraiser

Want to fundraise without leaving your house? Start a Facebook Fundraiser! Located under the menu icon (in the top right corner of your Facebook page on desktop), click on the “fundraiser” tab (at the bottom right of your screen), and Facebook will walk you through the rest. Here’s a link to a Help guide, if you want more detailed instructions.

Request a lighting event in your community

Many landmarks and notable buildings will change the colors of their lights for awareness efforts. Requesting a lighting event can be a fun (and usually free), way to raise awareness in your community. Dysautonomia’s awareness color is turquoise, and DI has successfully lit up many locations for awareness month, such as Niagara Falls, The Cleveland Tower, and Houston City Hall, to name a few. Many locations that often change lighting colors have an established process for requesting lighting events. If you have a place in mind, check their website for an online form or contact information for the building or monument’s management. DI provides a free letter template that you can use when making your request.

Donate

When in doubt, donate! As I mentioned above, the NIH spends an average of 33 cents per patient on POTS research. We can do better than that. If you would like and are able, you can donate through Dysautonomia International’s website. Instructions for donating by check are also available through that link.

Share your story

If you have a form of dysautonomia yourself, one of the best ways to raise awareness in your community is by telling your story. It can feel scary to open up about your struggles, but you might be surprised at how many people can relate. Share in whatever way you feel comfortable: talk with a family member, friends, or post on your social media. One of my favorite quotes is, “The shortest distance between two people is a story.”

Share Dysautonomia International’s posts on social media

Getting involved with Dysautonomia Awareness Month doesn’t have to take a lot of time or energy. A simple, free, and effective way to help raise awareness is to engage with Dysautonomia International on their social media accounts. Follow, subscribe, like, comment, or share any of their content this month (or every month!)
X/Twitter: @Dysautonomia
Instagram: @dysautonomiaintl
Facebook: @Dysautonomia International
YouTube: @DysautonomiaInternational

Check in with someone who has dysautonomia

Dysautonomia Awareness Month is a great time to check in with anyone you know who has a form of dysautonomia. Chronic illness can be incredibly lonely, and building community often starts with a simple, “Hey, how’s it going?”

If you’ve made it to the end of this blog post, congratulations! You are an empathic, kind, helpful human being. Dysautonomia awareness has come a long way in the 13 years of DI’s campaign, but we’ve still got more work to do. My hope is that the first time someone hears the word ‘dysautonomia,’ it’s not in a cold, sterile exam room. I hope that in the future, if someone does develop POTS, they’re not forced to give up careers or life-long dreams, that they’ll have more options, effective treatments, and better access to specialist providers.

We can’t change the world overnight, but we can raise awareness for dysautonomia in our communities, starting small, starting today.

Onwards: A Reflection on Benjamin Button and Graduating

By howellsalli

On May 22, 2024

In Uncategorized

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.

Packing, with POTS

By howellsalli

On May 30, 2021

In Uncategorized

It’s mid-morning and the sky is threatening a gloomy May day. We suit up anyway, dressing in swim gear and sunglasses, and our summer garb hugs us like armor, like hope.

My brother is in town for the weekend so we’ve made plans to go stand-up paddleboarding, or kayaking for me. It’s our first family outing in I don’t know how long so I hide my phone in my bag. I want to be present today.

My mother buzzes around the house, evaporating from the living room then reemerging like a magician. Her packing frenzy convinces me I’ve inevitably forgotten something, so I mount the stairs and head back to my room.

There were times, in The Dark Days, when I crawled up these stairs to bed. Today, I bounce, skipping every other step.

As my mom loads the car, I pack up too, taking inventory of my cream-colored tote bag.

Liter water bottle full of water, check.

Water bottle filled with electrolyte drink, check.

Backup packets of electrolytes, check.

Salty snacks in case I get hungry and/or dizzy, check.

Beta-blockers and backup meds, check.

My pill organizer for the day, check.

Personal fan (that makes only a marginal difference but for some reason I bring anyways) in case I get hot and symptomatic, check.

Regular human things I need like my wallet and driver’s license, check.

Hand sanitizer, check.

Face mask, check.

Keys, check.

Okay. We’re ready to go.

Mountain Climbing

By howellsalli

On May 18, 2021

In Uncategorized

This past Saturday marked the end of my Spring 2021 semester and the first official day of Summer break. I spent most of my weekend in the realm between R.E.M and slow-wave sleep, but in the few hours I was arguably conscious, I tried to reflect on what a bizarre semester it was. I say “tried” because frankly, I’ve been too tired to think until today. Two days ago, my brain wrapped itself in a thick layer of cling wrap, and the cling wrap is, well, clingy.

This semester was like a Rubik’s Cube, only a trick one that’s missing three essential pieces and turns out to be insoluble. It was a doozy filled with almost every obstacle imaginable: POTS, a historic snowstorm, a state-wide power crisis, a change in major, the transferring to a new university, entirely virtual school, and a pandemic (hence the virtual school.) I can’t believe I made it out alive, let alone retained any information. At this point, I think I can probably do anything now.

Except maybe work at Starbucks. That still sounds hard.

But as bizarre and challenge-filled as this semester was, I discovered I love working from home. Virtual classes rock for those who live in fussy, unreliable bodies like mine, and the option to attend lectures in my hammock more than makes up for all the awkward Zoom silences. For me, online school eliminated the physical challenge of getting to class, so I was able to use energy that would’ve otherwise been eaten up by POTS towards my studies. Overall, I’m amazed at how much I learned without leaving my house, and I thought online school was a creamy, indulgent sundae of upsides.

Moreover, as the world continues to reckon with covid-19, my professors seemed to have revived compassion for the disabling beast that is POTS. After a year of grappling with a novel virus, they could better grasp the concept of unpredictable health and had renewed empathy for how it feels to be unwell. My professors consistently encouraged me and all other students throughout the semester to prioritize our health and take care of ourselves. It was a relief to feel like we were all on the same page.

I’ll admit: at the beginning of the year, when I was gearing up for the semester, I envisioned flare after flare impeding on my studies. In the newness of January, I was mentally drafting the emails I’d write to my professors, filled with words like “unfortunately,” “emergency room,” and “extension.” I anticipated the stress of squeezing doctor’s appointments into my course schedule, and could already see my printer belching out wads of Doctor’s Notes. Gross.

This is the college experience I know. Luckily, my reality fell short of these expectations.

I had flares this semester, but they were fewer and far between. Sometimes I had to attend class from the couch, but my God, there are certainly worse things. As a transfer student, I didn’t know what I was doing half the time, but for the other half, I actually did. Even though stress occasionally got the best of me, I managed. Despite it all, I managed.

In the final days of the semester, my professors surveyed each class, asking whether or not everyone was ready to return to school in person. Through my screen, I watched over a dozen heads bobble inside little Zoom rectangles. But my head felt frozen; I couldn’t get it to move.

Thinking about the fall semester fills me with equal part excitement as it does dread. I imagine it’s similar to what a hiker feels at the foot of Mount Everest. When I look up, I see the mountain of challenges waiting for me: the obstacles I’ve not yet navigated, the unforeseen obstructions in my path. I don’t yet know all that’s ahead, only that I’m certain it will require fortitude, courage, and an exhausting amount of strength.

That looming mountain makes the ground feel all the more comfortable. The grass has never felt softer, more inviting or plush. I feel pulled to stay, pitch a tent and stay a while. But if I did, I know I’d miss out on the thrill of the climb. And what about that breathtaking view?

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.

The Unbreakable Hope

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

Start Small, Start Today: How to Get Involved With Dysautonomia Awareness Month

Onwards: A Reflection on Benjamin Button and Graduating

On Rebirth: A Life Update

You Are What You Wear: Superhero Edition

Begin Again

Swimming Lessons

Packing, with POTS

Mountain Climbing

A Different Kind of “New Normal”

Flashbacks of the Future

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