I'll be OK, it's just a hole in my head!
Just 5 days in to her teaching career, Mimi's head exploded.....
I accidentally met Mimi on a fairly recent trip to New York, in one of those ‘destined to meet’ moments at a comedy club. Like all good movies this one started with me and my friend Ellie having a drink in a comedy club and a curly haired gal flogging her wares outside. Ellie and I were flicking through Mimi’s book and from the very first page we were hooked, and for me a new friend was borne!
After convincing Mimi I was not trying to steal her book (especially at that point it was not signed so probably worth more!) I purchased her book and spent the next few days (actually weeks as I’m an irritatingly slow reader) running through a gamut of emotions as I read Mimi’s story.
Mimi is a writer, comedienne, teacher, all round awesome gal and whilst doing all these things, she’s only recovering from a pretty catastrophic brain injury – no big deal! Her book takes us through the experiences that we don’t always hear a patient go through and what its really like being a patient. What it’s actually like when you walk out of the hospital with your diagnosis and how you cope with that, the normal life you are trying to lead whilst dealing with the fact that you can barely walk. Having your heart broken and dealing with the fact that your brain is bleeding….. oh and the HCP doesn’t believe you.
Full disclosure: Mimi’s story is obviously based on the US healthcare system but the emotions and patient experience she receives is all too familiar over in the UK too.
Over the next 3 articles we will be talking to Mimi about her experience with pre-diagnosis and diagnosis, treatment and recovery. If you want to buy Mimi’s book and learn more there is a link at the end of the article, and if you want to hear Mimi’s hilarious rendition of this experience in her own words, you can see her at the Fringe in Edinburgh (link also at the end) I massively recommend it!!
So without further ado…..
Mimi set the scene for us, you were experiencing some symptoms but sort of pretended they weren’t happening and blamed them on running. What was going on in your life at this time?
It was a very hectic time in my young life. I was 22. I had just been dumped by my long-time high school sweetheart of nearly five years which ultimately ended in a toxic way. I was desperately trying to figure out who I was without a relationship, so I started going on a slew of blind dates (thanks Tinder! You're the worst!) It became my mission to find someone else to love me because I didn't know how to love myself.
My first symptoms were fatigue late that summer while working at a kid's summer camp. I dismissed it because I was still severely depressed from the breakup and had always battled with fatigue having hypothyroidism. I started preparing for my first teaching job in the fall, going to meetings, buying school supplies, and still going on dates a couple of times a week to keep myself distracted.
I had no idea what I was doing in the classroom but kept telling myself I was born to be a teacher and would figure it out. After a mere five days in the classroom, I started getting headaches, dizziness, and more fatigue. My vision was also getting blurred and I was clumsy just walking down the hallway.
The students must have thought I was drunk!
Your experiences to diagnosis weren’t the best and, in your book, you mention your physician dismissing your symptoms multiple times, can you tell us a little about that and how it made you feel?
To be honest I didn't know what to feel. I was sort of like, "well, OK, I guess this will blow over eventually." But it also bothered me that the first diagnoses didn't make any sense.
First my doctor told me I was probably just a depressed 22-year-old and THAT made a lot of sense. But the Vertigo diagnosis, that one just felt random. Like the doctor just Googled something off the top of her head and was like "It's THIS!" She gave me Dramamine which I'd only heard about before with friends who would get carsick. But why would I be carsick? And when I wasn't in a car? Again, made no sense.
Another misdiagnosis came after the first ER visit. That was scary. I was so sick I couldn't even get out of bed or move my head to look for the water next to me. By this point I'd called in for a sub to take over my classes. My sister drove me to the ER with a big trash bag to puke in and our parents met us there. The Physician's Assistant (like a step down from a doctor in my opinion) put a light in my ears and told me they were plugged up. I'm like OK, what the fuck. That also makes NO SENSE, DUDE. But again, I just kind of felt like a prop being passed to and from doctors and I had no control and didn't really speak out against what they were saying.
When we were in the ER that first time, I looked at my mom (MUM!) and was like, "Wow, Mom you look goofy with four heads" and all eight of her eyebrows disappeared into her hairline. She was so worried. Meanwhile, I'm cracking jokes with my sister about which red plug to pull in case things go south.
Also, the nurse in that ER missed my vein and spilled an entire bag of IV fluid in my lap and accused me of pissing myself and that really PISSED ME OFF. Like how dare you!
And also, if you had wet the bed, surely that would have been more cause for concern?? Anyway, how did you deal with your symptoms initially with everything else that was going on and your physician not taking you seriously?
I wouldn't call what I was doing "dealing with it" because I was just ignoring them.
Early on before all the doctor's visits I remember going to a concert with friends and feeling so miserable and sick like I was underwater. But I just stayed the whole time because who wants to miss out on [insert name of a band I can't actually remember whoops!] ripping it up on the stage. But anyway, I just kind of felt like not acknowledging the symptoms. I've always been that way, if I'm sick I still do everything I'm doing instead of taking it easy. This wasn't much different.
I was also in a performance in the mountains for a murder mystery dinner theater. I could have easily got a back-up for that when I didn't feel well but I went anyway. I was actually very used to people not taking me seriously. I look VERY young and I am written off constantly. So, I just kind of accepted that this was the same. My mother on the other hand...
Your mum was a real hero in this story, can you tell us about the role that she played at this time?
My mother is supernatural. It's not even human I don't think, this stuff comes from somewhere else. She has always been very in tune with people and things.
From the very beginning, she was at my doctor's visits. The first visit (diagnosis: millennial) to the urgent care visit (diagnosis: vertigo) to the ERs (diagnosis: earwax) she just wasn't satisfied. I would have given up after the first one, but she kept nagging me to get into different doctors and make phone calls, she was really active.
After the first ER, she told me to call my doctor's office every hour until she called me back (I kept getting the nurse who kept saying, "oh she'll call you back, blah blah blah" like stop calling basically).
After about five calls to the peeved nurse I called my Mom and she had just had enough. It was like [SPOILER] watching the Mad Queen Khaleesi in Game of Thrones...she just went apeshit. She came home from work right then and dragged me into a car to go the ER again.
Finally, my doctor returned my call as we were pulling out of the driveway and my mom ripped her a new one! She was crazed. The doctor kept saying to just take the Valium that she prescribed and for me to go to bed. Mum may have said some curse words, she really chewed her out and took me to a different ER and called ahead so they knew our crazy asses were coming! Who calls the ER ahead of time?! MY MOM. What was she doing?! Making a reservation?! Hahahaha...
That’s brilliant! What a hero! Do you think there is anything (other than your badass mum/mom) that you feel would have made the doctors take you more seriously?
That's a great question! I'm really not sure. Maybe if they'd done more neuro-tests earlier on but now that I think of it, I think my doctor had me walk in a line and I was a little wobbly but not that bad and that's where she got the Vertigo from, I think.
They weren't looking for something to be wrong.
I feel like they were really just trying to get mom's crazy ass out of their office as fast as possible. And maybe if they'd caught the double-vision in the ER, that may have been something I just said to my Mom and the nurses didn't hear me say that [correction: they DID discover the double-vision they just didn't do anything about it OH MY GOD].
If they would have looked in my eyes at that point they could have seen that they were skipping around (a big indicator of brain issues). They weren't thorough, that's for damn sure.
I can imagine your mom sat at home furiously trying to research to diagnose your condition...
I remember she might have called up my childhood doctor and started asking her questions. She was also talking to her friends at work about it. She was going with the diagnoses that we'd gotten (Vertigo, ears) and talking to them about what to do.
We were recommended to an ear specialist but that wasn't going to be for a few more weeks and she was really desperate. That's where the idea for the inversion table came from.
Also, just learned this (on the phone with my Mum now!)...she was watching all the doctor's very closely. At the first ER, there WAS a neuro-check and I did report the double-vision and he still didn't do anything. When he did the test, Mom watched how he did it and she later used that in the second ER when she saw that the nurse was doing it wrong.
That’s insane!! So, what was your diagnosis and how did you feel when you received it?
We stayed in the hospital that weekend to wait for Dr. Crawford to come give us the news.
It was called a "Cavernous Angioma" and he put the MRI scan on one of those fun light boards like you see in the movies (they're real!) and showed me which part of my brain bled.
I felt confused. I didn't even understand that my brain could do that kind of thing.
What information were you provided with?
He said that a Cavernous Angioma is something you're born with. It's a clump of cells that can...um clump up (I'm not a doctor OK!) anywhere in your body. If it hemorrhages it's kind of like a bruise. So that happened in my brain. They didn't know why.
(insert dumb joke: "Maybe she's born with it? Maybe it's a Cavernous Angioma!").
I remember he said I can't pass this down to any future kids so that was kind of cool to hear. I wasn't contagious. He said I needed to be on a few weeks of bedrest. He wrote that on a little piece of paper so I could give it to my university and not get in trouble if I didn't pay my student loans on time. He said it wasn't safe to touch it right now, which didn't register to me at the time as surgery-talk, but to call them if there were any new symptoms.
Who was your main point of contact?
It was supposed to be my primary care doctor but we thought she was full of shit so we didn't listen to her.
After we met with Dr. C he became our main man. I don't really remember talking to them a lot. I think the first time we called them with updates was a few weeks later when I couldn't taste anymore. Then we went in for the second MRI and shit got real
What was the first thing you did when you finally had a diagnosis?
I went next door to the school where I was supposed to be teaching and proudly announced to my estranged high school students that I was having my brain operated on....oh wait that was later, OK back up, back up.
Oh yeah, I posted about it on Facebook. The post read: "UPDATE for friends and family: After 3 long days, many pokes and MRI's and truly lovely nurse visits, I have been released from the hospital on good behavior. I will be resting at home for the next 3-4 weeks while my brain heals. My stability and vision are still kind of impaired (picture a drunk person haha) but I am otherwise fine. But don't you think for one second that some silly brain hemorage will keep me down. You heard me Denver Half Marathon, I'm coming for you in October baby! 😄"
Aren't you so impressed I could unearth that just now?! And yes, yes I did misspell "hemorrhage."
Hahahaha well at least then you’re medical spelling has improved since you were rewired? If you could change one thing about the way you approached those first few appointments what would it be?
I would have questioned more and done more research into my own health, taken a diary of my symptoms and brought those to their attention. But honestly, I didn't have the foresight to do that and I don't know how much of a difference it would have really made.
I don't think I would have done well taking things more seriously anyway, that would have really freaked me out. If I were to change anything it would be to see an emotional therapist during or directly after the diagnosis and during recovery.
I started treating my physical therapists like emotional therapists and they were great, but I really needed help with the PTSD and trauma of it all and that's something I can't address now because I don't have health care anymore (HA. WHAT. ME. I KNOW ISN'T THAT SCARY *more nervous laughter*)
Urrrmmmm isn’t that kind of important to have?! Anyway (awkward pause!), what would you change, as a patient, about how physicians handle patients, especially younger ones, in the diagnosis stages?
The triage system doesn't work.
They miss things and people like me can fall through the cracks all the time. They don't want to spend money on medical imaging or hospital visits. And in America, there aren't even as many doctors anymore. 9/10 times you can't even see a doctor right away, they give you a Physician's Assistant or a nurse.
You have to be like my parent's: just bulldogs. You have to be an advocate, but when you're sick you can't really stand up for yourself like that. You're sick and helpless and you want to trust in the doctor's because your whole life that's the message you've been told.
Flying in planes only gets safer when people die, flights go down. TSA improved after 9/11. Building codes changed and labor laws were put into place after lots of death and mistakes. Trial by error. But as a patient, I'm powerless to that systematic failure. And an error can mean life or death.
A young child, even me at 22; we're too young to stand up to the doctor's in this way and fight back. Physicians need to understand the full picture and not write off young people with health issues or symptoms. Age is just a number, it means nothing. I know kids that had strokes at 10 and 11. Anything is possible and doctor's need to take their time when looking at a patient.
My Dad was on the phone with me when I wrote this and he says: "Those who do not learn from history are doomed to repeat it" and I think some philosopher dude said that a hundred years ago but I think it's really true in this case. The saddest thing I learned a few years later was that someone that worked with my mom was having health issues and was complaining to her about how her doctor didn't care and wasn't listening. Surprise, surprise, it was my same doctor who wrote me off and refused to give me medical imaging. You better believe my Mom got her to switch her to a new doctor that day!
Wow, your mum is amazing!
Mimi and I’s next article will be on what happened next: the treatment and how you dealt with the immediate aftermath of recovery, but if you want to find out more about Mimi her book is on Amazon here: Amazon it's well worth a read!