Part 3: Road to Recovery
Part 3: Recovery. The road to recovery and the reality and necessity of leading a normal life in abnormal circumstances with a brain injury .
So for you Mimi, the journey to recovery was a long one, when you initially woke up from the operation, what were your first thoughts? (Apart from the meat?!)
My immediate reaction was that I had woken up prematurely during brain surgery and that I'd f***'d up my whole surgery.
Maybe I'd read somewhere that you could wake up mid-surgery on accident so that's what I thought happened.
I also thought it was aggressive that a strange object (presumably a human being) was pulling a large yellow tube out of my throat. I was (and still am) very disgusted by that image. I distinctly remember asking someone if I was dead and when she said no I asked if she was dead.
I was also incredibly thirsty...probably because I had an industrial-sized straw down my throat for 4 hours. I remember feeling really really great aside from that. The drugs were amazing. I felt like I was floating on a soft cloud and all warm and cozy-town. I think it took me a few minutes to really get my eyes open enough to realize that my vision was sideways and double. Which was absolutely the most trippy experience of my young life. In the book there is a hilarious anecdote about the catheter, this is routine in operations and would be a fairly normal thing for physicians. Do you think the need to tell patients about the smaller things is overlooked?
Oh totally. I don't think that physicians realize that a person who hasn't had a medical crisis before may have never heard about these bad boys before. It doesn't occur to a first-time patient that they might not be able to go to the bathroom on their own after surgery or walk to the loo and enjoy their special "me time" behind closed doors.
It also feels extremely violating when you don't know you're getting a straw up your naughty bits and awakening to the idea that somebody touched you down there and made that happen. It feels very not OK. Of course, it's a medical routine that needs to happen, but especially if you've got a newbie to the surgery game you'd better give 'em a heads up!
What were those first few days post-op like?
Very confusing! It's weird greeting your body for the first time again.
After surgery like mine, your body doesn't work like it used to so you sort of go through this whole discovery process of learning what doesn't function properly anymore. The biggest annoyance was that my head couldn't keep itself up on its own. It literally just slumped to the side and I couldn't lift it up without help or a mountain of pillows propping it up.
The vision being still double and now sideways was also very unsettling for reasons you can imagine. The first few days were in the Intensive Care Unit which is honestly the scariest place I've ever been. It wasn't so bad in the daytime when my family was there with me, but at night it was like a never-ending nightmare.
There was screaming and I heard people running everywhere. Lights were going on and off and sirens were all over the place. I'm 97% sure the person on the other side of (what I think was) my curtain died one night. I was also getting stabbed with a needle every six hours or so, again, NOT prepared for this sort of business!
I remember hitting it off with my ICU nurse Deana because she loved Geography and I was (supposed to be) teaching 9th grade Geography at the high school across the street. After a few days, my vision flipped back right side up but remained double for the next two months.
Oh, also, I was constipated. Big time.
Who were your main people for support and what were the roles that they played?
Mum and Dad first and foremost. It wasn't like I could make sense of what doctors were saying and doing so they walked me through it all and made sure I wasn't being manipulated into anything or mishandled.
Mom also kind of doubled as my like attorney/assistant/cushion adjuster. She was always on the phone with some insurance person or helping me fill out paperwork. When my head fell off my neck she helped me prop it back up.
The therapists at Spalding were also incredibly supportive the entire time not just of my recovery but of my wellbeing and how I had been handled up until that point. They brought in a special patient advocate person (that wasn't Mom for a change) and they interviewed me about everything that happened.
The real MVPs would also be my friends that came by during my various levels of brain f*ckery. Once my tastebuds started coming back they brought me cheeseburgers and fancy ice cream shakes and fun balloons to decorate my hospital room with. I honestly don't think that there was EVER a day when I didn't have a visitor. And then you were going to rehab and had the first assessment by the first physio who said you could go home in a week? Am I right in thinking it was your mum who saved the day and got a second opinion again?
Yes, so originally rehab was not in the post-surgery plans. We didn't even know that was an option, actually. It wasn't until a doctor tried to send me home right then and there (like a few days after surgery!) that a physical therapist on the floor asked for a second opinion from another PT.
Once I dragged myself around the nurse's station a few times at sloth-speed, that awesome PT told Mum about Spalding. It wasn't covered on my insurance plan but the PT said we should go anyway and they could deal with that shit later. And so on to rehab... what were you expecting before you went there? Were you prepared at all for what was going to be a tough recovery?
Hahahaha so about that! When my grandma was still alive she was at an assisted-care facility in Denver. It was really swanky, I remember. She had her own little apartment and kitchenette and a Keurig which I think had just been invented at the time or something. Very new age, very faaaancy. I mean there were still nurses around who would come and check her blood pressure everyone once and a while with a cute little medical trolley, but she basically could do whatever she wanted in her lil' pad.
Yeah. Don't ask me why, but THAT'S what I thought rehab was going to be like. It wasn't.
It was a bloody HOSPITAL. No Keurig. Not that I was allowed to have coffee anyway. I was not prepared
To be drilled all-day, every day with physical, speech, and occupational therapy or
That I'd be exhausted just by doing such basic tasks.
I was on a schedule, one that I didn't design or approve of. It was kind of like I was at sleepaway camp because I missed my family when they weren't there visiting, but also had to get used to it being my "home" until they told me I could go home.
One of the things that I didn’t think about before reading your book was that as a young patient, you didn’t have any peers in the centre. How was that? I note in the book you mention social media gave you an outlet and was your lifeline to the outside world...?
Yeah, all my friends were off going to grad school or getting married or like backpacking across Europe.
About the first week, I didn't see anybody remotely close to my age. I do love old people so this wasn't all bad. But it sort of felt weird to be the only person I knew who was working up a sweat in a gym doing basic walking tasks with seniors while all my friends were out in the "real world" posting pictures of their wedding cakes and getting into prestigious schools.
I was posting a lot of weird shit on Snapchat. At all hours of the night because the pills they had me on didn't give me much sleep. Just lots of weird vids of me rolling my wheelchair around the room at 5 AM. I was off Instagram for the time being, thank god. I don't think I would have pulled a lot of likes with my weird hospital content. Classic social comms plan there!! In the book I felt a very strong change in your emotional well being at this stage, it was like the immediacy of the operation was over and now the longer-term impacts were really starting to dawn on you. Is this accurate and how did you cope?
Yes, good on you for picking up on that! For me, things just happened so fast. It was hard to really understand what was taking place in my body so my mind kind of needed to play catch-up.
Pre-surgery it was all about denying that I was sick. Then post-surgery it was kind of like "OK, well now what?" They didn't know how long it would take for me to recover and at after a while, I sort of wondered if I would get everything back.
I was kind of like Benjamin Button, ageing quickly like an old person then being like a baby again and not knowing how to walk or use my limbs without help. I really let my guard down in rehab because it was the first place I actually felt safe. The therapists were so nurturing and empathetic of what had happened to me. I ugly cried a lot.
Was anything mentioned to you about looking after your emotional and psychological well-being? As well as your physician rehabilitation?
You know I don't think so!
I know that there was a support group, but I didn't really know about it until my last day of out-patient in the winter. I think they knew that I had a solid family so they may have just assumed that I was fine.
I was using my physical therapists as emotional therapists which wasn't really their job title, but they did the best job they could considering all my ugly crying. I really wish I'd seen somebody for my PTSD that I'd picked up along the way.
Your impatience to get better had a bit of an impact on you too...?
Oh, yeah. I'm a very action-oriented person. I'm always doing 27 things at a time. The fact that I couldn't run a half-marathon and prep my lessons and build a wooden desk with my bare hands really frustrated me.
I felt like I was getting behind in my life and I didn't like that. Taking a "chill pill" is not something I'm physically able to do so you can imagine this whole thing was really annoying to me. Seemingly normal tasks had to be learned again, showering and cooking, for example, this twinned with your impatience must have had a massive emotional impact on you..? How did you cope?
Yes. It was an utter loss of independence.
I'd been doing these things alone for so long I felt so lame and weak needing help to do them again. The first time my Occupational therapist Jamie and I attempted making cookies in the fake kitchen I was all over the place. I couldn't remember which ingredients were first and kept forgetting the recipe just seconds after reading it.
For a while, I just coped by ugly crying, but then I tried to make a game of it, a funny joke.
When I earned a "Walking Badge" that meant I could walk on my own, I made a big show of walking around the entire hospital to show it off. It started to dawn on me that I was improving and that gave me hope.
In the book you show us your drug regimen upon discharge, did you even know what those medications were all for?
Haha no. Not even one! I mean they told me what they were supposed to be for, but I forgot (obviously). My favourite was the Percocet ;)
How did you feel the first time you showered on your own and got a taste of independence again?
Sassy! It felt like that shampoo commercial.
I was really enjoying myself. I was in there so long I think my mom thought I slipped and killed myself on accident. It felt so good to be home an in charge of scrubbing my own armpits. Being in a hospital so long can really mess with your sense of self, and that first shower really brought me a renewed sense of independence. How much have you had to learn about yourself to become not only an expert in your own condition but an expert at self-management and care?
I'm basically a neurosurgeon now.
I learned so much not just about my brain, but also about how interconnected the brain is with every single part of my body. But it was one thing to research it and a completely different thing to put the self-management into practice.
I actually wasn't great at self-care before my incident and now I was even more horrid with it. I think most of that has to do with my personality and wanting to do everything and help everyone. It doesn't occur to me when doing 27 things at the same time that maybe I should take a break and chill the hell out. I've just never known how to do that.
The injury really forced me to acknowledge that my battery pack was smaller now. I still wanted to do everything, but my body just couldn't keep up like it used to. I needed to build that endurance back up again, which took a really long time. I'm still not the best self-manager these days (I live in New York, have like 5 jobs, and am always out past midnight performing in loud bars)...but I do have a little check engine light that pops on during the day that's like "hey, psst...you might need some water. I'd take a nap if I were you..." Sometimes I listen to that little voice. Sometimes I just keep doing my thing. Did you get the meat basket?? UM YASSSSSS. I ate everything. And fast-forwarding to the present day, how did you begin comedy? And how has it helped you with your injury as I know some of your symptoms can make it hard (loud and lots of noises for example)... I started (officially...I'd done it once right before I got sick but was completely hammered so we don't talk about that) in 2015 a few months after brain surgery. I got on stage and talked about how a nurse went to go take a smoke break after telling me my brain was bleeding (some slight exaggeration.) It wasn't funny at all but I think people smiled at me. After that, I kept doing open mics on Friday nights after a long week of teaching.
I started to notice that nobody else was talking about their brain surgeries on stage so that kind of made me self-conscious.
I started doing jokes about being a teacher, a white girl, how ridiculously serious yoga people are. I started to get OK at it. But it wasn't until 2017 when I was teaching a stand-up class to newbies that I was telling them to find something unique about themselves and they called me out like "well, what about you? Are YOU talking about your unique shit?" Busted! I started experimenting with my "brain bits" again.
It was hard because it wasn't funny.
But after about a year I got comfy with it. It's helped me understand what's funny and not funny about it and that there is actually a fine line between the two. It's been fun to explore that with strangers and see their unfiltered reactions to it. And yes, it's really hard. Especially if I'm on stage and any noise occurs in the audience. Take a waitress getting someone's drink order, for example. That shit throws me off basically every time. Sometimes bars don't turn off the music in the background and I have to fight my brain not to derail itself.
I also forget my sets all the time. Now I'm not so shitty to myself when that happens and I just say "oh, did you expect me to memorize this whole routine with a brain injury? HAHA" and then I look at my notebook and find my place again. People don't care. And if they do, they can go to hell ;) Couldn't agree more are you still teaching too? I teach writing and comedy classes, yes!
To adults now, which I think is a big difference. The first time I taught my stand-up class and my students were taking out paper to take notes I was like "wait...are y'all actually listening to me right now? WEIRD." I've been so used to standing on desks and screaming to get kids to pay attention to me. It's really nice to work with grown people.
Several of my students from that first class have gone on to perform at big NYC clubs, submit to comedy festivals, and publish articles in magazines. I take at least some of the credit for that ;)
And you should! what is the greatest thing you’ve learned on this journey?
Phew. Honestly that I'm resilient AF. I'm so much stronger than I ever knew was possible.
I guess I thought I'd crumble at something like this, but I've come out of it more powerful than ever. I also learned that I was craving a story. For the longest time, I rooted my story in my relationship, my jobs, etc. It wasn't even me, it was just sort of following along this path that wasn't my own.
For the first time, I had my OWN story. And nobody could take that away from me. Sorry, I can't pick a single thing...I also learned to be kind to myself and to share the love I have for others with me, myself, and I. It's been incredibly difficult and I still struggle with it some days, but I am more in love with myself than I have ever been in my life and it feels amazing :) And how legendary are your mum and dad?!?
THE MOST LEGENDARY. These people, I tell yuh. I don't know what planet they come from, but they are something else.
People come up to me a lot after reading the book and they absolutely gush over them. Sometimes they don't even compliment my book itself or my writing they just go on and on an onnnnn about how amazing my parents are.
I could be annoyed that these fans aren't pumping my ego, but I'm just lucky that these two humans who made me are absolute professionals at being parents. I know they've made mistakes (Mum, I'm looking at you with that time you sat me in the snow cuz I wouldn't sit still in my car seat! NOT COOL) but they've done so much right and have taught me the value of kindness and respect and resilience. They saved my life. I hope I make them proud.
Mimi's book is on Amazon here: Amazon it's well worth a read!