I regret to inform you that this story doesn’t have a happy ending (at least not the one you’d expect). This is partly because I’m still on this journey, partly because I mustn’t be made out to be inspiration porn since I’m more visibly disabled than before.
No, I did not triumph over the reaper in my near-death experience.
I am not grateful for what happened to me because it might actually be a good thing.
It is not admirable that I carry on despite how much harder it has become to merely exist.
Not in the least. Yet others continue to project what they want onto me, and I continue to get knocked off pedestals when I fail to measure up to terms I never agreed to. Rendering me nothing more than a botched savior. Destined to fail from the start.
Some people live and some people die, but we all expire at some point and no one is more acutely aware of that than someone who dodged it once before. What happened to me has changed how I engage with the world and has tested countless relationships. As a neurodivergent person who struggles with intrusive thoughts, the choice to keep living doesn’t feel like a given on my hardest days. I get blinded by my envy of those who don’t have the problems I do and by the rage that bubbles up every time I have to fight to get my basic needs met.
At the same time, what happened to me and what I continue to navigate is not what I’d categorize as an affliction, a burden, or a tragedy. It’s just another thing, and what happened to me could happen to anyone.
That’s what scares people so much and forces them to look away in poorly hidden disgust. It’s why being publicly disabled and not inspirational is often met with hostility. Because we’re refusing to conform to the tenets of a good disabled person.
No, I’m not terribly interested in making able-bodied people feel better by showing them how important it is to appreciate not being disabled. At some point or another, all of our bodies begin bodying.
And damn has my body bodied.
If I had to summarize my arc, it would look something like this:
I was gaslit.
I was finally seen.
I found community and support.
I have found something resembling a new normal.
But, without further ado, here’s what happened to me and what kicked off the hardest year of my life and the worst I’ve ever been (consider this your content warning. Duck out if you need to. I understand, I promise):
I had been afraid of writing about this day since it happened. I’m a Death Doula, so I thought, this should come more easily to me. Why isn’t it? What’s wrong with me now?
Intellectually, I know that’s not how it works. I wish it better prepared me for all of this and that it would just come flooding upon command. That might’ve made this all easier, honestly.
Friday, January 29, 2021, I paid rent from my iPhone and stepped into a cramped, windowless room to chat with a nurse about my allergy shots before they administered the injections. You see, in December 2020, I got allergy tested for the second time in my life and learned all of my allergies had worsened and that I might need to stay away from certain foods too (pending a food challenge to know for sure). I had rapidly gained weight from being on and off steroids between December and that day. I told my nurse at the allergist’s office about said steroids and how I was worried I would need to skip my shots that week. She and the doctor reassured me I’d be fine. I got the injections, waited 20 minutes, was assessed for no new swelling or symptoms, and was sent on my way. My husband had accompanied me, so we went to a Barnes & Noble that doesn’t exist anymore and to Target to try to act normal.
But I wasn’t fine. I felt it right away. But it was easy to doubt myself. I was, still feeling the side effects of the medication. There was, of course, the PTSD I already had. My anxiety. We could explain away everything.
Except for when things got worse.
While my husband was DMing a D&D campaign in our living room that evening, I stumbled into the bathroom, flipped the switch, and stared back at my face. My face was covered in pink, fleshy welts. Petrified, I just stared back, thinking the longer I stared, the more likely it was that I was hallucinating it all. My brain wracked with guilt that I already made so much of a fuss about my health, and certain it was normal and not an adverse reaction to the shots, decided to take a Benadryl and video-call my best friend.
I was determined to toughen up like all of the doctors and nurses told me to. I thought it would be fine and I would improve with some well-deserved rest.
It wouldn’t and it didn’t.
On Saturday, January 30, 2021, while the rest of Chicago prepared for the worst blizzard in recent history, I reached out to a friend who lived nearby because the symptoms were progressing. I knew I shouldn’t be alone and still didn’t trust myself enough to seek medical help because what if I was just blowing this all out of proportion?! They were thankfully just starting nursing school and could tell I was rapidly declining. When my husband got home from work, he and my friend dialed the nurse’s line to see if my suspicions were correct. The nurse calmly, yet urgently, advised me to administer my EpiPen and get to a hospital right away.
Thanks, husband and friend. Y’all and my doctors are the real heroes of this story.
Because yes, I was dying. Delayed onset anaphylaxis. It was not my anxiety or a hallucination manifested by a chemical imbalance in my body because of the flood of steroids. I recall thinking that in the past, in my history of having panic attacks, I used to say it feels like I’m dying. But actually almost dying doesn’t feel like anything else.
In the case of my life-threatening allergic reaction, it feels like your brain is screaming one thing while your body continues to power down. Your body is detecting a threat and is trying to keep you safe. It’s trying so hard to keep you safe that it’ll kill you in the process.
It’s the closest thing to feeling possessed. My limbs refused to obey my brain while I internally screamed movedamnitmovewhywon’tyoufuckingmoveuselessfuckingbodyyoureaburdenandyourhusbandhatesyouandyougonnagetfiredifyoulivethroughthis.
It’s not just that it’s been hard to write about this until now, it’s also taken time to comprehend what happened to me and why. Not just the anaphylaxis, but how my allergies went from being easy to ignore to almost killing me. And I felt a deep shame about how much of a hit my mental health took in the process. 2021 was one of the worst years of my life and even the nice parts are difficult to look back on because the filter of the memory of my almost-death taints them.
An ER visit and a two-day stay in the hospital due to steroid-induced psychosis later, I temporarily relocated to my mom and dad’s home until my husband and I found a new (safe, toxin-free) home for us to live in together. The time between my near-death experience and when we finally were able to try to resume our lives was extremely difficult for everyone in my life with pockets of joy peppered in. You have no idea how desperately you need those when you’re recovering and trying to investigate the murky waters of one’s health.
Years later, we have some answers and started to piece it together:
What we know now is in late February, or early March 2020, my husband and I were stricken with a mystery virus that we now know to be Coronavirus. No one wanted to test me for COVID-19 when I reported my symptoms to urgent care because none of them were stay-on-a-respirator-on-your-stomach level bad. What did happen, however, was that my lungs took a hit and it felt like I had pneumonia again, my muscles were unrelentingly tense and sore for someone who wasn’t powerlifting anymore. I had tinnitus and gut flares for months and became more susceptible to infections. And then in December, my allergies were worse.
Now, in 2024, it’s plain to see what happened.
Between 2021 and now, I fought tooth and nail for a doctor who would take my situation seriously, and thank God I finally found them. I got extremely into the MCU’s Doctor Stephen Strange because he was someone with my temperament and a similar story and things don’t always work out cleanly for him. He resents his disability and can be a sarcastic jerk and a little (a lot) pretentious and can push people away #relatable
I’ve found a lot of support in my community with others who have had their lives changed by Covid and the like. After much trial and error, I finally found a therapist who is helping me actually heal, has reshaped how I relate to trauma, and helped me reframe what I truly need out of therapy (because damn, had I gotten it all wrong). Most of the time, when I talk to people about what I’m going through, all we can offer each other is space, affirmation, and understanding. These exchanges get me through more than any of them may realize because talking about my situation unfiltered is a blessing.
“I get it,” is what’s usually said at some point. While it may seem small, it matters.
The more information becomes available, the more I learn about how my distinct set of issues would fall under the umbrella of Long Covid and may fit the criteria for at least one condition I have yet not been treated for. My allergies going rogue may be a symptom, not the root cause.
And there’s a distinct possibility it’s completely unrelated.
Does my lizard brain crave a neat cause and effect? Sure. Does that mean I’ll always get it? Absolutely not.
And if I do have the condition I think I have, there’s no cure (surprise, surprise). You just manage it like with anything else.
Anticlimactic, right?
Yeah, knowledge is power. But there’s no going back to “the old Emmy”.
The thing about a near-death experience is that part of me did die because I’ll continue remembering that moment in some way as a line of demarcation between what was before and what is now. How I relate to it will change - it already has. Some days I feel indifferent, some days I feel resentful. Lately, I feel accepting of it or something akin to inspired by it. But that inspiration is for me alone and no one else’s comfort.
So, I suppose, more than anything, I aim to offer insight. Insight by finally spilling my guts on the Internet and offering an unapologetic look at how I almost died exactly three years ago today, and what that has meant for my life since.
If this is for anyone, it’s other folks who are navigating hardship and want to feel a little less alone.
But mostly it’s for me.
And now that I think of it, the one thing I can most assuredly say I’ve triumphed over is my shame.
I am no longer ashamed of advocating for myself in the doctor’s office.
I am no longer ashamed of telling my friends with multiple furry animals to come over to my house if they want to hang out, otherwise, I tell them to be ready for me to be masked in their home. Or we pick a neutral zone to meet me halfway (compromise!).
I bring my own food to family functions and I ask for final decision-making power on what restaurant or cafe we go to together.
Situations are what they are, and there will surely be more situations to reckon with as the years go by. I can’t go back, but I can go forward shamelessly.
Remember that nobody knows you or your body better than you. Even if your capacity changes or it feels like parts of you are taken away from disability, you are still you. Flawed and powerful even if your capacity for one thing or another changes.
Protect your selfhood from the flames, it’s one of the few things in your power to clutch onto even when bodies body or get hit by any other act of God.
Whatever you do, don’t look to me for step-by-step inspiration. Commit to cultivating trust in yourself and learn how to be your own role model.
Trust your self-expertise and what you bring to the world because no one can take that away from you. At the end of the day, you’re probably going to be stuck with you longer than anyone else will. Trust your alarm bells when you know something is wrong and don’t be afraid of “making a fuss.”
You’ll be glad you did as I know I was.
I appreciate your transparency. Sorry you're in the Long COVID club - the one that keeps growing, that no one wants to be part of, that's continually ignored by society. Cheers to finding your way through and with Long COVID despite the ever-present ableism from all directions. May we forever resist the inspiration porn and make visible the value and realities of disabled folx just as they are.
So much love for you, Emmy, on this anniversary, and thank you for remembering for us what disability can mean and do. (and, re: MCU, I cannot WAIT for your inevitable post on disability justice and superhero archetypes....)