What a sensational title. Attention grabber, attention seeking, maybe.
But let’s back up.
It was 1:24 on New Years Day, my skin was burning, afire. My eyes barely open due to the swollen, red folds of skin wrapped around my eyes. My face raw, ripped and bleeding, slashes of bloody lines cascading at all angles around my mouth. Open slits under and around my eyes, sometimes dripping with blood. Moving any facial muscle involved am immediate electric shock of pain. And crying, which had been happening often, caused tears to slither into the open cuts, stinging. The clothes touching my body were too much. Getting comfortable was an impossibility. I wanted to tear and rip my itching, burning skin off. In the past, at my worst, I’ve fantasized about literally lighting myself on fire to burn my skin off because I thought it might be better than what I was experiencing in the moment.
Suicide.
Do you remember [if you are of a certain age, perhaps a millennial or parent of a millennial] referring to a mixture of multiple soda/carbonated beverages as a “suicide?” Example: you walk your 10 year-old-self to the gas station/convenience store to get a drink from the soda fountain, and you move down the line of drink options, adding some of each beverage in your ice-filled, ginormous styrofoam cup. Poof. You have just made yourself a “suicide.”
Why was it called a “suicide?”
Anyway.
As some of you may know, my poor mental health is due to my ever-present poor physical health–my chronic health issues, my autoimmunity, my allergy to the entire world—whatever you want to call it.
Having a body seemingly opposed to every environment and substance makes daily existence exhausting. It also just feels perplexing—like I must not be meant for this world. And if not, in which world was I meant for? Did they make a mistake placing me here? Why does my body reject almost everything it encounters? Why does my body attack itself?
I’ve tried a cacophony of diets, medicines, biologic drugs, supplements, meditation, mindfulness, chiropractics, allergists, rheumatologists, dermatologists, attempted allergy shots and a whole host of other things.
Some of you know about my health issues or maybe you know I have some sort of chronic issues but aren’t quite sure what is happening. Honestly, I’m not fully sure I know what’s happening, and maybe doctors don’t either. But I do know how it manifests in my body.
One thing I have/or almost certainly have is red skin syndrome/topical steroid withdrawal (TSW). It can last years and does far more than affect the skin–I almost certainly do have this, but also more. Check out one of my videos on it or go watch the documentaries “Skin on Fire” or “Preventable: Protecting our largest organ” to learn more. You can also visit ITSAN.org. This iatrogenic disease has COMPLETELY altered how I live my life since early 2020, though it began affecting me a few years earlier, I just didn’t know what was happening at the time. (This piece of my health issue is almost certainly the culprit in causing my skin to burn, itch, rip, ooze and split open.)
Along with this (or perhaps because of TSW) I now have extremely severe environmental allergies. It sounds benign, doesn’t it? Allergies. Just allergies, right? But being allergic to seemingly everything, everywhere all the time makes it extremely difficult to do just about anything or be anywhere, anytime. And, to note: I don’t just mean these allergies cause a little sneezing and sniffles. Rather, body attacks itself in a myriad of ways.
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I’ve explained the symptomalogy some before, so I’m not going to do that now—plus it’s probably boring anyway (and maybe all this is boring, but here you are. Thank you).
All that to say, I’m just going to tell you what I’m REALLY TIRED OF DEALING WITH in relation to my current health issues:
I hate that I don't know what to eat or drink without having allergic reactions. I hate that it hurts to shower. I hate that it often constantly feels like I’m covered in poison ivy and hives on a regular basis. I hate that I can't be around dogs or cats or really any animal for that matter (due to extreme allergies). I hate that I can't go to so many of my friends’ and family members’ homes because they have dogs or cats. I hate that I have to wear a hazmat suit when I clean my own home (yes, really). And even then, I still have allergic reactions.
I hate that “allergic reaction” does not explain what is happening to my body. I don't just get a runny nose and watery eyes. My entire body revolts. I want to rip my skin off. I want to claw and gouge my eyes out.
I hate that there's not a specific label—a box–that my illness, my disease can be put into.
I’m sick of not knowing if I’ll be well enough to get coffee with you in two weeks or even in two days. I’m sick of having to tell people I can’t go. I’m sick of the unpredictability of it all. I’m sick of not being able to fully open my eyes because of constant burning and swelling. I’m sick of my eye lashes, eye brows and hair falling out. I’m sick of not sleeping at night. I’m sick of always being in pain. I’m sick of looking like I’m 30 years older than I am because I’ve lost an excessive amount of collagen due to all the skin damage.
I’m tired of never getting excited about vacations because I don’t know how my body is going to react or because I KNOW my body is going to lose its mind. I’m tired of having allergic reactions every time I’m on a plane or in a hotel (probably allergic to cleaning products). I’m tired of being the chronically ill spouse, friend, sister, daughter, coworker. I’m tired of always having one foot out the door in all of my jobs because my body is constantly rioting, making it difficult to survive each day.
I’m tired of being the one that can’t eat whatever is being offered (or accepting it anyway knowing I’ll have wild reactions later). I’m tired of having to ask for accommodation.
I’m tired of being worried all the time. I’m tired of being stuck at home. I’m tired of feeling isolated. I’m tired of putting my life on hold. I’m tired of not doing the things I used to do. I’m tired of losing myself. I’m tired of becoming someone, something I never wanted to be. I’m tired of having to pretend like everything is okay. And I’m just tired, literally.
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I think the suicidal thoughts trickled in because my hope finally started to wane—my hope that I would get better. I wrote a poem about my chronic health issues in 2020 that had a repeating line: “everyday I awake with hope” because I did have hope that things would get better. Back then, I never thought I would still be grappling with all of the same (and new) issues. I look back on the Mary-Margaret of 2020, who wrote that sentimental poem, holding on to hope… she had no idea what hell she would continue to endure for years to come. And quite frankly, I’m glad she didn’t know. Sometimes it’s easier not to know.
But I need to relocate the poetic hope that Mary-Margaret of the old days held.
As for the suicidal thoughts, maybe I shouldn’t call it that–maybe that’s too extreme. I more-so had thoughts of wanting-to-be-asleep-forever, [because then I wouldn’t be excruciatingly uncomfortable every waking moment.]
On New Years day, I was home alone, and had been alone for a couple of days. For further context, I had been in a “flare” with my health issues (extreme skin and eye issues, uncontrollable allergies to everything, and all-encompassing inflammation) for about six weeks. I hadn’t been sleeping, and when I say I wasn’t sleeping, I REALLY mean rarely and barely, just spots of sleep here and there. And let me say, sleep deprivation certainly has a knack for causing madness.
During recent weeks/months, I had hardly been able to leave my house or even step outside. I hadn’t seen people. I was just trying to get through each hour, each day. But on New Years Day, I began arriving at a point where I didn’t exactly know if I wanted to get to the next hour.
Around 2:34 pm, I started crying uncontrollably, shaking and unable to breath. Then I started screaming (clearly still able to breath). Screaming that I couldn’t stand this anymore. Yelling, yelling, YELLING, asking what I’d done wrong, what I needed to do to fix this, what did I do, what did I do, WHAT CAN I DO? I threw a glass across the room, I slammed a chair into the wall. My screams turned into shouted prayers, begging, asking, pleading for some sort of sign for what to do or some sort of relief. Then I was on the ground, on my knees, pleading still. I curled up, hugging my legs against my body, sobbing, salty tears burning down my face.
I starting to scare myself. I’ve had extremely horrifying and debilitating times before, crying every day, sleeping one collective hour each night, but I don’t remember having thoughts of not wanting to exist anymore. But the thoughts ever so slightly started to creep in.
Also, I don’t know if you’ve ever screamed-cried before, but if you are in a silent home alone and you pause to listen to the echos of your blood curdling cry—well, let me say, it is quite unsettling.
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In my current work, I serve clients diagnosed with severe mental illness. I have been trained on how to converse with people who are actively experiencing suicidal ideation, and I have, on various occasions, spoken with people while they are in the midst of contemplating suicide. I have been present as someone attempted to throw themselves from a twelve-story window and while they tried to slice their wrist with a kitchen knife. I have been told graphic ways a person plans to accomplish their suicide.
And I have spent time with individuals in the hospital after accidentally surviving their jump from a building or who lost a limb due to a their chosen method in attempting suicide.
Now it was time for me to talk myself off this metaphorical ledge.
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At some point, while on the bedroom floor, I experienced what felt like a calming thought. I need to sleep. That is the answer. I need to sleep so I’m not experiencing any of this. I want to sleep for a long time—maybe forever. But how can I make myself sleep when I can never escape into slumber normally? Maybe if I take a handful of Benadryl? I wasn’t sure.
I decided to move to the bed.
I’m not sure what all went through my head. But I knew that I needed to tell someone what was happening.
Earlier, my husband texted me asking what I was doing, but I postponed responding since I was, well, scream-crying into the void.
As I sat in in bed staring at his text, wanting to be asleep, I considered feigning that all was well. Instead, luckily, I said, “I’m really not doing well today, Dave. I don’t know how I’m going to go to New York. I can’t stand this anymore.” And then shortly after that I said: “I’m sorry.”
(For context, he was in New York with his family, and I was supposed to meet them in a few days, because I had a work trip scheduled in New York.)
He called me immediately. I couldn’t speak once he called, as I was uncontrollably crying again, hardly able to breath. I hung up and called back shortly.
Somehow, speaking to another human brought the reality of what was happening to the forefront.
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I won’t get into all the details, but I ended up going to Urgent Care on the afternoon of New Years Day, and received a steroid injection and a steroid pack (in hopes to alleviate all my inflammation). For those of you who know what has been going on with my body, you may know that I have been very intentionally avoiding all corticosteroids in an effort to heal (but the healing–or whatever is happening—involves complete hell before reaching the end). I knew if I took steroids, I would experience some relief, even for a short bit. And since I had gotten to the point of not wanting to be awake anymore–well, I chose the solution that would at least give me some hope or relief temporarily.
So I did it, and I was better physically because of the steroids for about nine days. I was able to go on my New York work trip (which I had absolutely been dreading and agonizing about for weeks because of my poor health). I had a few days at home where I was able to go on walks, the grocery store and coffee shops. But this reprieve didn’t last. Symptoms rapidly emerged and progressed. And I’m hiding again. Skin searing red, eyes swollen half shut.
But I don’t want to lose hope. I have to find some reinvigoration to work toward healing. I have to believe that healing is possible. Or at least that balance is possible.
I have to believe it’s going to get better. I have to. I have to. I have to find some way to accept this reality, to live with these arduous times. I have to find joy somewhere. Not to say that I don’t ever find joy. I do, I have. I will. I just… this has been going on for so long.
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To be whimsical… I do have days where I can see the tiny flickering lights ahead, like a city far away in the night, when you’re on a long hike or drive, and once you see the tiny glimmering lights in the distance, you know you're on your way, you know you're getting closer to home and to safety.
But then I have days where the lights seem to be moving farther away. I question myself, whether I'm walking in the right direction. I turn around, this way and that. And then I turn back, and the lights are gone. I'm in total darkness. And I don't feel like I'm going to make it. And I don’t have the energy to keep going, to keep searching.
Those are the days I want to sleep. Just sleep it all away. I just want to wake up when I know it's going to be okay. But I don't know when that will be, and it's crushing me. It's crushing me.
I don't want to lose myself. I like myself. I'm pretty odd and awkward and I say the wrong thing and overthink and worry and daydream, and sometimes I don't like my nose or my slightly crooked eyes or the freckles covering my skin. And sometimes I wish I had a different body—one that was more womanly or thin or tanned. But most days, I just want this exquisitely weird and singular body to be healthy, back to the way it used to be when I took it for granted. Back when I looked in the mirror at 16 or 25 and hated myself and worried about what this guy or that fellow thought. But I had my health. I was healthy. I just want to wake up without my skin burning and literally falling off my face.
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Somedays I feel elated by my body, believing that one day it will heal. I will heal—that I am healing—and my body is working so, so hard for me. I do believe that. I do, I do. I have to.
And then other days I berate and curse my body for not working faster, for ever getting to this state. Why, why why have you done this to yourself? Why did you allow this? What did you do to deserve this? Why can't I fix myself? What's wrong with me? And then I berate myself for not “thinking positively” and “getting my mind right”
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I don’t really know how to end this piece of writing. I don’t want to be disingenuously positive but I also don’t want to be overly negative because that would also be insincere. And I don’t want anyone to worry about me. Or maybe I do. Probably I do. Clearly, this is a cry for help. [Insert awkward laughter here.]
But also… I know I’m not the only one going through something. And I, of course, know there are masses of people going through atrocities that I could never imagine. I am not comparing my experience to theirs. And maybe you’re going through something too. Yes?
Maybe you are struggling with a chronic health issue yourself—with an extreme health issue. Maybe you lost your job or relationship or you feel lonely. Maybe you’re just feeling lost and unsatisfied with life in general. Maybe you live far away from your family or your significant other and it’s just plain hard. Maybe you hate your job. Maybe you are struggling with money. Maybe you’re tired of being strong for everyone else and want someone to be strong for you for once. Or maybe you just got a really bad haircut that makes you feel less like yourself. (The last one can be really upsetting too.)
With whatever you’re going through—I guess it doesn’t necessarily make it easier knowing that others are going through hell as well, but it certainly doesn’t hurt to know that you’re not alone in struggle. It helps to talk about it sometimes too. Maybe you don’t need to write about it publicly (or maybe you do). But don’t sit with it all alone, all the time.