Trigger warning: Oh dear… literally everything
A few hours into my eighth grade field trip to Washington D.C., I began developing hard lumps on my calves that kept spreading until my legs were covered in black and blue. It hurt, but not disruptively so. I don’t know what the hell I did to bruise myself so badly, but I was used to getting random, unexplained bruises.
At some point, one of the teachers pulled me aside and asked me what happened. I was certain that I didn’t bump into or trip over anything; and yet the bruises kept growing. “Maybe your blood vessels are popping as you walk?” she said, tentatively. “Yeah,” I agreed, unable to think of any other explanation. I still think the teacher was right. If I hit my legs, I’d know.
When I arrived at the hotel where we were going to stay that night, the teacher called over the school nurse to take a look. The nurse gave me an ice pack and told me to get it checked out. Before I went to bed, I texted my mom a picture of my calves.
She replied that she will schedule a doctor’s appointment when I get back. For years, my mother had alerted my general practitioner of my easy bruising, but was told not to worry as bloodwork didn’t point to the expected culprits: leukemia, anemia, various vitamin deficiencies. But this time, she knew that something was wrong.
I also knew that a bruise that big wasn’t normal, but I wasn’t too freaked out, which was strange in retrospect: just two years ago I was a raging hypochondriac who believed I had an extremely rare disease because my nether regions looked kinda funny. If anything, I was more worried about the ogling eyes of my classmates as I walked around in shorts in broad daylight.
“Oh my gosh, are you okay?” a girl gasped, using that obnoxious baby-talk she used to address me and a few other kids who spent most of their time in special education classrooms. “Oh no, she’s being abused!” a boy chimed in — the smart-ass who enjoyed ambushing teachers with hypothetical questions, like if he could pee in a bucket if the need arises during a shelter-in-place lockdown. “I almost fainted when I saw that huge bruise of yours,” my severely hemophobic friend later confessed to me. I should’ve packed a pair of leggings.
A few days after I went home, I saw my GP. The pain was long gone, and I almost forgot why I was at the doctor’s office, until I glanced down to see the marks lingering in my legs; my entire right calf was covered in varying hues of purple and yellow, save the imprint from the seams of my ultra skinny jeans. My GP was puzzled. She relayed the situation to other doctors at the clinic, who were just as stumped as she was. She told my mom that I needed to go elsewhere for more detailed bloodwork.
About a week later, an entire vial of blood was sucked out from my right arm. I felt a bit lightheaded as the syringe filled, but overall, it wasn’t bad. Another week passed, and the results came back: normal, once again. A second referral was made.
The next month, my dad and I traveled to the City to see this other doctor, who might have a better idea on what was going on. We went over my medical history, including my premature birth, a benign head tumor I had as a baby, and my psychiatric medications, none of which explained my easy bruising.
Then, the doctor asked my dad if he had ever heard of Ehlers-Danlos Syndrome. My dad, a registered cardiac nurse, had never heard of it, and I’d only heard of it in passing in a social media post about invisible disabilities. The doctor explained that easy bruising was a sign of Ehlers-Danlos Syndrome and suggested that I get screened for it. While my dad and the doctor wrapped up the session in medical jargon, I Googled Ehlers-Danlos Syndrome, first stop Wikipedia.
I read that most people with Ehlers-Danlos Syndrome experience multiple symptoms in addition to easy bruising, like stretchy skin and frequent dislocations, which didn’t apply to me; meanwhile, someone with a vascular form may have easy bruising without necessarily having these other symptoms. However, I learned, Vascular Ehler-Danlos Syndrome is a rare and very serious form of Ehlers-Danlos Syndrome. The statistics were bleak: people with Vascular Ehler-Danlos Syndrome are prone to arterial aneurysm, dissection, and rupture, making their median lifespan 48 years old.
As we left the hospital, I asked my dad what he thought. He also had the Wikipedia entry open on his phone. I don’t know, he said. He pulled up a picture of a hyperextended thumb. “You don’t have that,” he looked at me quizzically. Actually… I mumbled, lightly pressing my pointer against my thumb, causing both fingers to squish backwards. He paused in consideration, wondering if we were heading towards some resolution.
I didn’t need to say anymore to know that he was thinking what I was thinking: we needed answers, but whatever it was, we hoped it wasn’t the vascular one. After all, it’s a rare condition; what are the odds? I don’t remember if I said it, or if he said it: “We’ll find out.”
When I returned to the hospital, I had just started my freshman year of high school. I was aware that the visit was a part of the ongoing investigation of my mysterious bruises, but I didn’t know what was on the agenda at that point.
When my doctor greeted me, I blurted out that I’d read about Vascular Ehlers-Danlos syndrome and that I was afraid I had it.
“Why are you worrying about that? We don’t know yet,” the doctor said, in a rather condescending tone of voice, but I didn’t object. I knew that was a thing grown-ups did to me quite often — ricocheting my questions, as though I wasn’t smart enough or strong enough to handle the conversation.
The doctor did a quick physical examination, vitals and all. When he was done, he told me to go outside because he needed to speak to my dad, one-on-one. I slouched on a chair in the waiting room and played with my phone. Shortly, the doctor returned, inviting me back into the room. I perched onto the examination bed, thinking that he was going to conduct another exam or ask me more questions.
But when the doctor cued a nurse to fetch something for him, she came back with a box of tissues, instead of a clipboard or a gown. He closed the door. That was the moment I knew what he was about to say:
“So, the genetic tests show that you do have Vascular Ehlers-Danlos Syndrome.”
I had an incurable collagen deficiency that compromised every part of my body, including my lungs, my arteries, my heart. What happened to my calves at the D.C. trip could happen to my vital organs, extinguishing my life in a blink of an eye. I felt so defenseless.
I burst into tears into my dad’s arms but the tears ran out fast — I could’ve sworn I cried more when I read the last chapter of The Reason I Jump.
I was like, okay, now what?
The doctor said that his colleagues, who specialized in vEDS, were going to help me. He said that I was in good hands, and my dad nodded in agreement.
I was wearing a flannel shirt with a thin, gray sweater underneath, black skinny jeans with knee slits, and a tawny Steve Madden combat boots. But when I left that hospital room, I felt less like a wild rock chick wannabee, and more like a frail old lady. As we faced the bustling Upper East side intersection, I wished I could just wrap myself in styrofoam, crawl into a box, and never come out.
Then, my dad told me that he has been in contact with an actual old lady, who also had vEDS. Over 60 and going strong, she was the perfect person to counter the doom-and-gloom narratives dominating my Google search results; she had a family and a fruitful career, and she loved to travel.
My dad texted the woman, and she agreed to meet us at a nearby cafe. I don’t remember too much of the conversation, but I walked away feeling a little less alone. There’s nothing more reassuring than hearing that you aren’t the only one.
When I came home, I had a talk with my mom. Apparently, the DNA test was done from the blood they took at the previous visit. When my parents received the result, they were distraught, but they adopted a more optimistic outlook after they got in touch with top experts on vEDS and learned about all the research they were doing. I didn’t mind that my parents didn’t tell me right away, but I felt so bad, when I realized that they were, in a way, grieving, while pretending everything was fine for me and my little sister.
I actually ended up doing the same thing, grasping onto normalcy. I remember I went back to school the next day, and I carried on with my life, as though nothing had happened.
I garnered more insight into my prognosis later that month, when I met with a cardiologist who saw other patients with vEDS and similar conditions. Throughout the appointment, she emphasized the importance of minimizing stress to my cardiovascular system. She told me I couldn’t take Aspirin, go on intense carnival rides, or give birth (I was far more disappointed about having to stop riding tilt-a-whirls than being unable to carry children, because I knew for a while that I didn’t want biological children, let alone push one out my vagina). She wrote a letter to my school to exempt me from lifting heavy objects and playing contact sports. Finally, the cardiologist started me on medication to prevent my blood pressure from skyrocketing, and told me to come back for biannual scans and EKGs.
These changes had a ripple effect on my relationships and my self-image. As we all know, growing up is exciting but hard. Heartache, it turns out, doesn’t always come from fake friends and bad breakups. It also comes from realizing our parents are human, just like us, and they have their own biases, hang-ups, and blind spots. For me, that realization occured when I butt heads with my dad over whether I should disclose my new diagnosis. I resented him for it, for far longer than I’d like to admit.
After learning about my vEDS diagnosis and what that meant for me, I realized that some of what has been chalked up to my mental disability was actually caused by vEDS. My horrible posture and difficulty sitting still had to do with the fact that my joints were wobbly and my muscles were working overtime. Knowing about my new diagnosis changed the way I understood myself, and in a true Asaka fashion, I wanted to discuss my discovery on social media, where I intended to document my disability journey, and I felt further compelled to tell my story, when I began utilizing my new accommodations.
My dad told me that I should be careful about who to tell. If the wrong people find out, he warned me, “All they’ll see is a ‘freak’ and a ‘weirdo’.” He made it sound as though I was deserving of ridicule and that the responsibility fell onto me to not provoke them, to keep them at a standstill. I couldn’t bring myself to thank him for his willingness to ward off the bullies, when I was the collateral damage. I didn’t think he was being realistic about the cruelty of the world: instead, he was unknowingly projecting his own discomfort around the loaded topics I was so willing to confront.
“I don’t understand. When I was diagnosed with autism, you encouraged me to educate my classmates,” I remember telling him.
“Well, that’s different. EDS is complex,” he responded. He said that any assumptions made by a layperson will likely be incorrect and that he wanted to spare me from the hassle of explaining it to ignorant minds, as though I hadn’t been doing that very damn thing with my autism diagnosis. In fact, that was part of why I wanted to inform my classmates about vEDS: I had an inkling that more people would respect my intelligence, once they realized that some of my perceived deficits stemmed from physical condition, not a mental one (the whole ‘my mind is fine’ card, as unfair as it is, was so enticing for a kid trying to get by). I would’ve burst out laughing, if I wasn’t so goddamn furious. All this showed me how little he knew me, how removed he was from my everyday life, despite claiming to know what is best for me.
But he continued, looking at me with disappointment. “Remember when you were so obsessed with getting an ADHD diagnosis? You were dying to tell the whole world” he said. “You see a pattern there?”
I felt so small and looked down on. He uttered the words “obsessed” and “dying”, as though this was no different than my twelve-year old self being obsessed with Taylor Swift and dying to get my brows waxed. Most adults in my life refused to see my so-called preoccupation with labeling myself as anything other than a silly fad, or a trait of autism. In reality, it was a survival strategy. People with all sorts of disabilities, illnesses, and conditions rack their brains trying to find the words that will allow them to communicate their experience with utmost precision and clarity.
“If you don’t care about what other people think, why do you feel the need to tell other people about your diagnoses?” he said. He made it sound like I was hysterical, and he was the rational one — a method I would later see him use for other, worse things — but I remembered that I did not contradict myself, any more than he contradicted himself.
Back then I couldn’t find the words to vindicate myself from the purported hypocrisy of broadcasting personal and potentially compromising details of my life. Now I do. Whether it is staying quiet to avoid controversy or speaking up to be heard, if not listened to, we all negotiate with the world. We weigh the pros and cons and make our choices, taking both our external circumstances and internal intuitions into consideration. We are interdependent creatures, and none of us can opt out. This is a conversation that I’ve had with a lot of people, particularly, non-disabled people who mistake the luxury of not having to inform and educate others as some holier-than-thou wreath of “quiet dignity”.
Long story short, adapting to my new diagnosis sparked bigger questions. Sometimes, things got heated. And yet, none of them was about the elephant in the room: my mortality.
I was a freshman in college, when the dying stuff began to feel real. It wasn’t just because of Covid. When I got an .edu e-mail, I received an email every time a student passed away, which happened more often than I expected. I didn’t know any of these people that passed away, but I felt awful for them. I wondered if they also faced a scary diagnosis, like I did. And I kept thinking: Will I be next?
One time, I wrote my e-mail obituary in my head. She was a passionate writer and an outspoken advocate for the disabled community. Yada yada yada. But when all is said and done, the world was going to keep turning without me. I hated it.
It was typical for me to struggle with catastrophic thinking every once in a while, especially in periods of prolonged anticipation. I developed a cynical streak as I grew older, and whenever my life was heading towards a direction that felt too good to be true, I found excuses to doubt it. I knew, logically, that doing well doesn’t make me more likely to die, but it surely opened my eyes to how much I’d be losing if something were to happen. So I considered the worst possible scenarios. What if my plane crashes? What if I get run over by a bus? If you’ve also struggled with anxiety, you know how that goes. I was able to overcome it by reminding myself that the brain can send false alarms. I really thought I was over it, but of course, I was no match for the final boss: my vEDS.
When I began to confront my mortality, my outlook on life changed. I started to roll my eyes at statements like “You have your whole life ahead of you” (Maybe you do. I probably don’t) and “This too shall pass” (If I live to see the day). Not only did these words fuel my dissociative escapism, it didn’t make sense at all, given my cloudy prognosis.
It made me think harder: even if I live till I’m 100, did I really want to live a life where the future is my sanctuary and the past is disposable? Nothing lasts forever, so does that mean nothing matters? Of course not; of course we matter. It’s in our bones. We are all blips in the universe, but we manifest purpose. The statement that nothing lasts forever isn’t supposed to anesthetize; it is equally a threat as it is a promise.
I told myself I was going to do what motivational posters, song lyrics, and Instagram quotes told me to do: “live today like it’s your last day.” Tomorrow isn’t guaranteed for any of us, and my odds are higher. There’s only so much we can do to curb our fates. And so if I was going to die young, I was sure as hell going to live fast: work hard, play hard, and go all the fucking way out, you know?
But my obsession with efficacy only made me frantic and impatient, terrified to delay gratification in case I won’t live to see the day I get my wish. Every setback felt like a catastrophe because I wasn’t sure if I should believe in second chances. When I felt dissatisfied I turned to material things. I developed a shopping addiction. I was a bit like a kid throwing a tantrum: if I wanted something, I wanted it NOW.
I’m trying to live in the moment and this is what happened, I remember telling my therapist at the time. “But that’s not living in the moment. You’re still hung up on the what if’s?” she said. She was absolutely right. My attempt to stay present, aside from it being misdirected, was very much rooted in the fear that something bad was going to happen in the near future. I was ruled by anxiety, the confusing kind that showed up as a numbed sense of dread rather than shaky hands and churning stomachs.
Turns out, telling myself to live today like it’s my last day is just as useless as telling myself not to think of a pink elephant. Indeed, mental health is a very paradoxical thing. Oh, it was so unfair — if I didn’t know that my body was a house of cards, my life would be much easier. Like they always say, ignorance is bliss.
The truth is, a scary diagnosis, or any sort of bad news, doesn’t provide us with a renewed appreciation of life. We have to work for it, and sometimes it feels impossible to feel good again, when so much of what passes as “positivity” in our culture hinges on hollow platitudes and flimsy premises that seem to fall apart beneath you. And thus the grueling work of reassessing our values and priorities begins. None of that, of course, means we shouldn’t call a spade a spade. My vEDS is a disease, not a blessing. Nonetheless, this is my reality and I need to make the best out of it.
If you’ve been following me for a while, I hope everything I’ve shared here explains all my annoying spiels about staying present. I learned that happiness is not something to be pursued, but something to extract from all that is available to me. When I’m having a crappy day, I make a point to ask myself: What can I do that can be done right now? Have I reached out to my loved ones? Did I do my relaxation exercises? Regardless of where I am in relation to my long-term aspirations, there’s always something worthy of appreciation, something I can hold onto. But as long as I view happiness as a quest, I’ll never be satisfied, no matter how swiftly I act.
Obviously, I’ll always want something I don’t have yet. It’s only natural. The capacity for forethought is what drives humankind’s progress, both as individuals and as communities. Still, it’s emotionally taxing to look to the future with the understanding that my time on this planet may be short. Coping with vEDS is a delicate balancing act.
I’ll always remember what my therapist once said: your future self relies on your present self. Instead of waiting for things to happen, I had to work on it; instead of comparing myself to other people, I had to allocate my energy onto bettering myself. The best way to bridge the gap between the future and the present is to turn passivity into active behavior.
As such, I try to keep myself busy, and break things down into days and hours, instead of only thinking in terms of months and years. I’ve also started ADHD treatment, which has helped immensely. I’m proud of how far I’ve come.
Though my #1 priority is my life, I’ve also come to question the finality of death.
My first foray into existentialism occurred during a short-lived, nonetheless terrifying mental health crisis, long before I knew about my vEDS. It first started out with a daft thought borne out of jet-lagged stupor and the surreal wonderment of seeing Japan for the first time in four years: what if the world isn’t real? Straight away, I tumbled into an abyss of existential thoughts: Oh my God, I’m inching towards death. What’s the point of being alive if we all die in the end? Why am I me? I became depressed.
Before I started intensive mental health treatment, my dad had a word of wisdom for me: leave it up to God. Though I don’t share his religious beliefs, I knew he was trying to tell me that I was just a person and that I was allowed to enjoy existence without trying to solve its illogicalities. I could use a little faith, even if that didn’t come in the form of organized religion.
After six years, many mileposts, growing distance, I find myself thinking about faith again, now with a stable mind and a body I can’t trust. Some say that faith contradicts science, but I believe faith and science compliments one another. Our existence is inherently absurd. Science explains how but not why. It has also proven time and again that human perception is limited — did you know that there are two colors that you can’t see? The line between natural and supernatural is much blurrier than we think.
Since life has its mysterious ways, I wonder if death does, too. I won’t be surprised if some form of afterlife exists. Maybe there isn’t, and our consciousness just fades into nothingness. Either way, a big part of why we fear it so much is because we view it through the limited lens of mortal imagination. But death transcends. I don’t want to glorify dying, but I have to acknowledge it. The less it scares me, the less it runs my life.
My spiritual journey may be an unconventional one, but I’m not ashamed. The way I see it, I don’t need commandments in order to treat other people with compassion: I just put myself in their shoes, because I’d want them to do the same, too. It is in that same way that I don’t need to believe that death is one thing or another, in order to cherish the life I have now. Human connection is what keeps me anchored in my sense of purpose.
These contemplations, in tandem with therapy and medication, have done wonders to my mental health. I know that mixing spiritual practices and mental health is somewhat of a controversy these days, because we’ve seen so many people use spirituality to promote quackery (For the millionth time, Karen — you can’t just tell someone to pray their way out of their OCD, or stop taking antidepressants and do yoga instead). But it doesn’t always have to be that way. Interestingly, my spiritual commitment to tolerating uncertainty and turning fear into curiosity are similar to the themes found in conventional therapy modalities, like CBT and DBT.
So, to answer the question posed in the title: am I dying? (Technically, we’re all dying, but you know what I mean). Probably not, but I don’t know.
I should make it clear that vEDS is not a progressive disease. It’s not like I have wasting muscles or mutating cells. I just have skimpy connective tissue. I think of my body the same way I would think of a bralette from Shein: it’s made from flimsy fabric, and though it helps to avoid rough handling, it can also fall victim to low-key, wear-and-tear.
My vEDS isn’t very severe. I could well be totally fine and go on to live a long, healthy life. Or I could drop dead tomorrow. I hope I don’t, but if I did, it would likely be because of my condition.
It’s also likely that I’ll experience a significant medical event(s) in my lifetime. To be completely honest, I’m terrified of becoming more disabled than I am right now, even if I survive. I’m afraid of acquiring brain damage, going blind, or becoming deaf. It’s not that I think disability is inherently tragic. I know that’s not true. It took me years to adapt to and embrace my existing disability, and I shudder at the thought of having to start all over from scratch.
I’m twenty, an age where there is a 25% chance I could develop complications. The number will keep rising as I get older. It’s scary. But I’d like to think the odds are in my favor. Most people aren’t diagnosed with vEDS until they experience complications. I, on the other hand, am already taking measures to mitigate the risks. So far, I’m in good condition. Meanwhile, medicine continues to progress, which is truly wonderful. Maybe I can adopt some of my parents’ optimism. Though at times I can’t help but wonder if things are worse than they let on, I know that wallowing in despair won’t make anything better.
The hardest part about sharing this part of my life is the sheer amount of uncertainty it contains. I know some of my friends are reading this: I’m sorry to alarm you, and you’re more than welcome to message me directly. I don’t want to be a bummer, but I can no longer deny the impact vEDS has on my life.
As usual, I’m turning pen to paper (or finger to laptop? That should be a thing.) to deal with my feelings. It’s funny — people commend me for my vulnerability when I talk about my mental disability and I say thanks, but that’s, like, nothing. You think that’s raw? Read all my stuff and I’ll show you raw. Sometimes, I feel tinge of guilt, because it seems like my friends can never catch a break. I keep dropping these metaphorical bombs. But it’s so cathartic. And I’d like to think that I’m offering insight, not just pissing and moaning.
Despite the hardships I’ve endured, I don’t want to define myself as the girl with a tragic backstory. I don’t want to be pitied or put on a pedestal. I don’t want anyone to thread too delicately around me, thinking that who I am or what I’ve gone through makes me rather scrupulous or easily offended. Don’t get it twisted — I’m not a delicate flower; I’m a shameless, insufferable little bitch who won’t take herself too seriously, and I love it.
My plan is to keep loving, keep creating, keep growing… as always. At the end of the day, I don’t want to let this diagnosis, no matter how scary, become a scapegoat for my cynicism. There’s got to be more to living than preparing for doomsday.