You’re entirely bonkers. But I’ll tell you a secret. All the best people are.

Lewis Carroll

Author, Alice in Wonderland

I just need to focus. I am willing myself to focus. 

I have just “woken up” to find myself sitting on the bathroom floor in the one-bedroom apartment I rent. Although, truthfully, I haven’t actually been sleeping per se. Just…unaware. I struggle to recall what day it is or even what time it is. Should I be sleeping? Getting ready for work? Why am I on the bathroom floor? How long have I been here – I mean… minutes…hours? I slump against the wall next to me, the cool, rough texture grazes my cheek and for a moment, it’s the only thing holding me up as the room tilts around me. I’m shaking, confused, dizzy and wondering what in the world is wrong with me. 

Naturally, my first instinct falls to my previous medical problems seven years prior when I had spent nearly a month in the hospital resulting from a rare auto-immune disease, called Goodpasture’s Syndrome that nearly ended my life and ultimately destroyed both of my kidneys.  Although a very difficult trial of its own, I had been more or less medically stable since then, aided by frequent checkups and daily anti-rejection medications. In recent months I had been consulting my doctors more than usual due to increasing fatigue and other unusual symptoms. Many lab tests had been drawn, and a CT scan and ultrasound had already been performed with no indication of a serious complication. 

Again, I close my eyes in an attempt to stop the chaos. I must focus. 

How did I end up here? I wonder if I messed up my medications, if the pharmacy mixed up the doses, or if it’s just a weird flu virus…or is it all in my head? Even in such a feverish state, my mind absentmindedly skims a mental catalogue of all the things that could be wrong. Suffering from a touch of hypochondria (and rightfully so), my internal database of medical symptoms and diseases is fairly vast and therefore provided plenty of material to work with. I kept coming back to my medications, nearly all of which have come with their own slew of side effects and symptoms, and then suddenly for a brief moment my mind clears and I have what I had begun to call an “aha moment” – something I’d recently read about in Oprah’s Magazine. The brain fog has temporarily faded at this point and I am absolutely certain that I’ve discovered the solution to all my problems. I work out a theory in which over time my body has built up an immunity to the steroids I take for anti-rejection. I’m confident that I’m really on to something now, and even take it a step further beginning to speculate if my kidney doctors are to blame for over-prescribing the medication for years. 

Then suddenly, as if someone has flipped the switch, the light bulb goes off again and I struggle to regain the clarity and insight I had only moments ago. I take a slow, deep breath and my dog wanders into the room through the open door and I can now hear the muffled voices on the TV I left on in the other room. He licks my feet as his way of greeting and settles himself next to me on the bathroom rug. Then, to complete the gathering, my cat saunters into the room as well and curls up on the tile a short but safe distance from the dog. For once, they don’t roll around with each other and play or fight, they just lay there next to me in quiet solidarity for who knows how long as I try once again to focus and when the tears start to roll down my face, I’m not sure if it’s frustration, fear, or exhaustion. All I know is something is very wrong.

Although that day on the bathroom floor seems to be seared into my memory, I can tell you now, after emerging from the madness that it’s entirely possible that it never even happened. To this day I find it hard to distinguish reality from delirium in the days, weeks, and even months leading up to my hospitalization, as I descended into the dark recesses of my mind. If it did in fact occur, it would have probably been about a week or so before I made a frantic call to my dad and stepmom requesting to be taken to the hospital. That last week of my previous life is a rioting haze of anger, confusion, sadness, and desperation.

During that time, I missed several days of work as I could barely pull myself out of bed most mornings. I spent my time making calls to my doctors, researching medication side effects and trying to document all of my symptoms through frenzied notes and audio recordings on my phone and laptop. I compiled a timeline of ailments, tests and correspondence with my renal doctors from the last three months. I became so immersed in my mission that I ignored phone calls and texts from my friends and family – undoubtedly starting to show cautious concern over my new obsession. I barely ate or drank and forgot to feed or walk my pets. In between the manic episodes of trying to figure out what was wrong, I slept – sometimes like a rock, other times only in fits and spurts – waking to headaches, severe muscle weakness and dramatic tremors.

An audio note from my cell phone captured a few days before entering the hospital [1]:  

“Suggest that why I felt so good yesterday was…m-manic, was mania – ugh this is making me go crazy! What the frick is going on? But I can’t…I just can’t think about it. I need to take a nap and then I will probably get up in a couple of hours and want to eat…I’m just trying to document everything so I…[long pause]…I suspect my mind will be clearer tomorrow and I can – or manic – then I can figure out everything. Ok.” 

Eventually I come back to the theory that my meds are the problem, I’m convinced that I’m taking too much prednisone, this has to be the answer. Aiding that though is research I’ve located online that states long term steroid use can cause mental health problems, tremors and many of my other symptoms. I’m absolutely elated with my discovery and can’t wait to tell someone! But when I finally do talk to my friends, instead I rave on about conspiracy theories and how my kidney doctors are overdosing me on anti-rejection medications on purpose and how I’m concocting a plan to expose them. When I talk to my dad a few hours later, my mood swings violently from confused crying to outright rage – at my doctors, my meds, my life.

An audio note from my cell phone captured a few days before entering the hospital [2]:  

“…And I want to note that I think my dad called back shortly…after…ugh, he-we-ca-I trust him and he told me to take [my prednisone dose] but I can figure that out tomorrow and I think that he was worried …and I need to know that I was gonna-that I was not – that I was sane enough to look at that tomorrow when my brain doesn’t have the fog. 

“So I fell asleep probably around 8 and then my phone went off at 10, like I suspected, for my meds. And I got up and realized I need to eat something so now…the brain fog seems to be gone and I’ll test that out here in a little bit after I eat but the-the really extreme weakness is back and the shakes are back but not the brain fog. And …as we, figure out what the right dose of prednisone is, um, but can look at it, I just feel so tired, t-too tired to look at it, um…look at a-everything I’ve been um doing, uh…tonight.” 

Although my current state is making it more and more difficult to put a string of logical thoughts together, I continue to try to talk myself down from the crazy. Truth be told, the sneaky incubus slowly eating away at my sanity was so adept at disguise that all the Googling and WebMD-ing in the world wouldn’t have given me the slightest clue. Even at full brain capacity and with years of medical experience and a multitude of resources at their fingertips, my doctors would search for weeks before they were finally able to put an official name to my mental monster: Anti-NMDA. Such a benign, unassuming name that tells nothing of the horrors inflicted on the patient and those around them, nothing of the resulting battle for physical, emotional, and mental recovery, nothing of the extreme loss that is to be undoubtedly suffered at the hands of your own body.

A digital note-to-self saved on my laptop prior to hospitalization:  

What?? Sun night – headache, no shakes, super foggy, pretty acting a little crazy!!!! I can’t comprehend what’s going on – during TV show or conversation with Dad. What is going on? I feel sooo stupid… 

What do my instincts tell me to do? If I want to understand what is going on on the TV, need to [record for later] and go and do something else. Try again when head clears because of pred[nisone] dose. Need to re-evaluate tomorrow when head is clear. Why do I feel like I’m back in a fog today – this morning I still felt good like yesterday but as the day goes on, I feel like I’m going crazy. Feel like if I’m going to figure this out I need to notate every single thing to see what effects what. Although this seems a little maniacal to write all this down and if someone found it then they would think I was super crazy! But it’s just for my own thought process to look at tomorrow… I should eat something but not even hungry. Did I eat? I had yogurt. Did I eat anything else today? Nope – could just go to bed …but when I need to take meds and if I haven’t eaten by then the meds will make my stomach hurt… Everything feels surreal but body tells me to go relax. DON’T answer the phone because I don’t trust myself to say anything that makes sense. Feel like I will go off on another crazy rampage and worry someone. Just ignore calls for the night and see how I feel tomorrow or how I feel the rest of the night. For sure. Also, my head hurts should I take something? And did I address the whether to eat or not issue yet- need to look back at notes. 

…Wait now I’m back and never resolved something. Let’s look again. Okay whatever my instincts say I haven’t really eaten all day. How much and have I taken pain meds today? I woke up early then went back to bed for an hour or so and then what? Research, reading, tried to sleep but couldn’t. Haven’t slept well last couple nights – force myself to stay up late – why?? Forgot. Then get up out of habit at 6:30am and make myself go back to bed instead of getting up for coffee and then falling back to sleep. Okay I’m pretty sure that this rant is proof that I’m crazy – but hope when the fog clears tomorrow I’ll be able to make sense of it all. Now going to step away, go to pee, get food and go lie (sic) in bed and maybe read or do crosswords and see if I can do it without getting frustrated. Just remembered – while doing research, Dad called and don’t really remember now what that conversation was about but I know I was crying and I don’t know why – said it was the prednisone talking. Really? I’m in such a fog I feel like pred[nisone] doses are so high I can’t focus so just need to get out of my head and go sleep. Will read this tomorrow to distinguish how crazy I am. Ha! Just glad I don’t have to go to work tomorrow and try to fake it but can’t do this forever –don’t want to let them down. Let anybody down. Is it the pharmacy – did they screw up? Okay going to force myself to eat? and go to bed NOW. 

Things finally came to a pinnacle on a Monday night near the end of March. My condition was deteriorating rapidly and I began to realize what little control I had managed to retain was fading fast. I called my Dad and asked him to take me to the hospital. By then I could barely comprehend the words coming out of my own mouth – I was speaking frantically and bouncing from topic to topic as I tried to explain why I needed help, although judging from his voice, I doubt I needed to do much explaining at that point.

As I waited for he and my stepmom to arrive, I paced from room to room of my apartment, while my pets looked on curiously. I called friends and mindlessly chattered about what I should do next. My Dad and stepmom arrived to chaos. I was getting more and more confused and couldn’t seem to pull myself together to leave. I couldn’t focus and kept asking basic questions over and over. My apartment was a disaster – garbage bags piled by the door, dishes piled up all over and no clean clothes to wear out of the house. I spent several minutes looking for something to wear and likely ended up with something very similar to what I had been wearing to start. This was followed by a similar period of wondering out loud what I should do with my pets and deciding they would be okay by themselves for a night. It was the middle of Colorado winter and I had to ask if I needed to wear a coat. I’m not even sure how long it had been since I’d been outside.

My memory began to fade almost as soon as we arrived at the ER and didn’t return until months later. At least six months of my life were lost, if not for the notes and accounts from my Dad and other family members, the harsh, undiluted reality of my hospital records, and what fleeting memories I have or that have resurfaced as I began to explore the story for myself.

Heading to the ER that night, the monsters were already maliciously eating away at my sanity. It would be a long and treacherous journey before my uninvited house guests had a name and they would far overstay their welcome.

1 Comment

  1. Nesrin Shaheen

    Thanks for sharing your story Erica. As always, so well written! We are blessed to have you in our community of warriors and caregivers.


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