It's Not All In Your Head.... Trials and Tribulations of Treatment For Head Trauma
Part 2: Treatment. In this article Mimi and I wanted to dig a little deeper in to the experience of treatment from a preparatory perspective, what emotional needs are (if any) managed alongside the treatment needs, what could be improved about this. How the standard of care changes throughout these journeys and the level of information patients are provided with. So important in head trauma cases.
So, Mimi, after your diagnosis, you went into a bit of what we call ‘watch and wait’ process. How was this for you emotionally? I know you use humour to deal with ‘feelings’ but really.... how were you??
That is an excellent question, I wish I could tell you. All I know is that after the initial diagnosis in that little ER room when I was told my brain was bleeding I thought I was going to die right then and there.
All of a sudden I was freezing cold and had a panic attack.
I think that was the fear settling in. After things calmed down and we were told I was not indeed going to die right there, I just sort of went into shock I think. Or denial. I think those two emotions are closely related. So for a while it was shock and denial. Then I think the next one was anger. I was pretty pissed off that all my friends were getting married and going to grad school and doing "adult" things and I was stuck at home with a stupid brain bleed. Along with the anger I think I also felt some kind of complex shame. Maybe I was embarrassed for being sick or weak or something, I'm not really sure. Again, most of this is only things I've uncovered now. It was all hidden with the humour.
What were your feelings during this time? I know you mention in your book your friends were a great support.
Yes! I have the world's greatest friends. My phone was always blowing up and I was getting all kinds of fun treats in the mail. Ones that were around came to visit me all the time. One time like five came over at once and we all played board games and ate pizza. It was Settlers of Catan and I'd never played it before. Try understanding THOSE rules with a bleeding brain! Ha! They let me win I think ;) It was kind of fun having all my friends around, I felt special like I was on holiday.
But there was also the embarrassed part of me that thought it was kind of lame they had to see me all sickly, especially when things were going south and I couldn't walk on my own. They were in good spirits though despite probably being really freaked out.
Did you realise your were getting worse or were you in denial?
Yeah, denial mostly. But I was keen to the fact that things were not going well. Especially with my left side. One of my friends had encouraged me to write a book about a week after diagnosis and it scared me that it was getting harder to type with my left hand. I wasn't a skilled guitar player before the injury, but I remember picking it up because I got bored one day and just starring at my fingers and not being able to make them play the cords. Then there was the walking and the dizziness. That freaked me out the most. Most days I just napped a lot and got tired with really simple activities.
I didn't shower a lot because that started to feel more and more dangerous.
When you went back to the physician prior to the confirmation you would receive an operation how did you feel? Walk me through that journey with your dad...
We went in for a second MRI after I revealed to my sister that I couldn't taste anymore, a symptom that I (shockingly!) wrote off. Dad and I went in late at night to a hospital across town. It was kind of spooky. There was practically nobody there. Dad was so great. He walked me really slowly into the hospital and got me in a wheelchair. He'd actually just had knee surgery so he was pretty crippled as well. But he was so focused on me, on making sure I was as comfortable as possible. When we wheeled up to the check-in desk I remember not being able to take my license out of my wallet. Then came time for the MRI. A lot shorter than the first one. It felt like five minutes. Dad and I got french fries after. It was the first time I'd had an appetite in weeks. It was late and a lot of the places were closed. Dad drove around to a few different places until we got me some delicious salty goodness.
Bless that man. It reminded me of when I was a kid and we'd go get fast food after hockey games. I felt so bad that we were both in so much pain instead of getting off the ice after a big win.
And when the doctors confirmed the operation did you feel you had everything you needed or was it more like being tasered?
I've never been tasered, but yes, I think it was like that.
That was some supreme denial right there.
Pretty sure the doctor said there was some possibility of a straw coming out of my head after surgery. I don't think he said it was a straw, but that's how I understood it. I felt like a cartoon character. A STRAW? It sounded ridiculous. How was I supposed to take THAT seriously, hmm?
The approach the physicians were now taking with you seemed much more serious, and on reading your book it felt like they were listening much more closely to you. Was this the case? Or were you on more of a ‘pathway’?
Yes, they were more keen to my symptoms (when I reported them anyway). I think the 'pathway' was that hopefully it would stop swelling and go away on it's own. When that didn't happen they were ready to take serious actions (a.k.a. the straw predictions).
The taste buds going was a big indicator that things had escalated and they didn't hesitate to book me immediately for a second MRI to check it out.
Where did you go to find out more information? Or did you not?
Hmm, that's a great question. There may have been a pamphlet or two given to us along with a bunch of directions for the surgery.
I don't think I Googled brain surgery because I think by that point I'd already done some WebMD'ing and I'm sure my mum had too. By then it was all about keeping my emotions in check and not freaking out about having my brain cut open.
I didn't want to know what they were going to do to me.
And how was the rest of your life at this time?
Messy! I felt lonely even though my friends were coming by a lot.
It was also weird that I didn't know anyone else who was going through the same thing. It was like this awkward thing where I didn't really talk much about what I was going through and didn't really want to. I wanted to be normal. I wanted to be talking about some bad date I was on or the kids in my classroom.
Anything but what was really happening. Most of my friends were moving forward in their lives and I was so envious that I was stuck and unsure of what my future looked like, or if I even had one.
I thought it was super touching your dads work friends bought you a meat basket... the sentiment!! The meat basket was hilarious, but I note it also played a big supportive role too....
Indeed! It was the strangest, most amazing gift to ever receive. I'm now (kind of) a Vegan so it's even more hilarious to me now, but yes. It did have a special role in my recovery.
Because I was having all these weird death-ey thoughts creep in, the idea of having a "last super" was kind of funny to me (again, hello denial).
Dad wouldn't let me eat the meat basket the night before surgery. I was peeved but later looked back on it and realized that Dad didn't want to indulge in my "last super" thoughts. He knew I'd be fine. We had a barbecue when I returned home from rehab a few weeks later. It was glorious. I ate everything.
So the day of the operation... what was running through your mind (meat basket aside!)
I took a shower at about 4AM. For some reason I wanted to feel clean. I put my long hair in a big top knot and grabbed my purple backpack that I'd packed the night before. Everything felt very slow. I waited downstairs for my parents to come down. We drove to the hospital and Mom pointed out places she knew, places where she'd lived when she was my age. I was numb. The radio distracted me for a little while. I think Dad put on the comedy channel.
When we got to the hospital things felt even slower and weirder. Like I was watching a movie of my own life and wasn't actually participating in it myself.
We filled out some forms. I signed a paper where I checked a little boxed that I'd like to be resuscitated if my heart stopped beating (um...duh?) I had to be weighed and they made me drink a strange black fluid that was supposed to keep me from throwing up but I nearly threw up just getting down in the first place. I remember being horrified at weighing 109 lbs. I had to change into a hospital gown and they took my clothes and backpack.
Despite my numbness, I was especially freaked out that the nurse couldn't find my veins for the IV. It delayed the surgery and they had to have a guy come in with weird goggles to find them. Finally they wheeled me away from my parents and started doing things like I wasn't there. They might have told me to count down from 10.
How were your friends and family coping?
I think Mum lost like 10 pounds that week and Dad probably got a few more grey hairs on his moustache (sorry Pops!).
They never showed that they were stressed or worried sick. They were loving and did everything for me. I think my friends did OK too, and they never told me how worried they were. Some of the friends I had in different states didn't even know just how sick I was because I was in such a state of denial myself. It's only now that they read the book that they're coming back to me and telling me how bad they feel about the whole thing.
What could have been done to improve your experience leading up to the surgery?
Hmm. Good question once again! More information maybe would have been good. For my parents at least.
A support group would have done wonders for me.
I really should have been in emotional therapy during the whole ordeal. I wish I'd been talking to people who were in the same situation as me. I would have loved resources about mental health and healthy things for me to be doing to help myself and care for myself during that time. An apology from my original doctor wouldn't have killed anybody...
Mimi and I’s next article will be on what happened next with her recovery, but if you want to find out more about Mimi her book is on Amazon here: Amazon it's well worth a read!