My lovely friend on Facebook has this as her status currently and it sparked off in me a need to fill in some of the bits I have left out of the post op story. My first post op blog post was 6 weeks post op when I had just discovered I had memory problems and it was quite a shock.
When I first came home, and I say came home because I don’t remember a great deal of the time in
That’s quite a feat when you have a holey memory; feel completely disconnected from yourself and just a little bit terrified by everything. Of course I dared not express my terror, or disconnected feelings for fear of being medicated, or worse, what ever worse was. My perception of reality was not the same as everyone else. Things I believed to be one way would turn out to be otherwise and the world as I knew it would turn upside down. It was a bit like being Alice in Wonderland but a whole lot more frightening. I relied 100% on my husband for my basis for reality. I needed him to be consistent all the time or my worlds would quite literally fall apart around me.
One evening over dinner, before he was aware of the disconnectedness and how far it extended, he joked with our son that I was not actually here and still in surgery and hadn’t woken up yet. I ended up in tears because I couldn’t tell if I was actually asleep dreaming my life and the things that had happened since surgery or if he was joking. He hadn’t done in maliciously it was just him joking around but because I had no real basis for reality it was alarming for me. I then had to tell him what was going on for me and how I just couldn’t tell what was real and what was my brain filling in gaps.
After brain surgery you spend a lot of time sleeping. Sleep is your body’s way of allowing the brain to recover so, after having a hole drilled in your skull and then through your brain to reach the absolute middle to remove a tumour, there is a lot of healing to do and a lot of sleeping required. Consequently your brain will do funny things like fill in gaps with what it thinks may have happened feasible or not. I had remembered a conversation that Charlie had with another patient and he said something that he absolutely wouldn’t have said, that was my first clue that something was a little odd.
Reality and our place in it is such a very fragile thing. I have had great difficulty trying to express any of this up to this point and I am still struggling with it now. Writing this is mentally and emotionally draining, I want to throw my hands in the air and leave it another few months. I will update it later or make another post down the track if I really feel the need to correct or update this one, but it is time this was said and expressed.
There is more to the recovery process that I didn’t post in the earlier posts for fear of upsetting people or unsettling them but the reality is that brain surgery IS upsetting ad unsettling. It’s not a walk in the park and it IS hard to recover from. I’m not complaining though, being here without the tumour, without the pain, without sudden death hanging over my head is the most amazing blessing! I didn’t dare to hope for so much.
Oh! In the end I was classified as having ABI anyway, no antidepressants required..... worried about nothing ....... Brains are fun no?
4 comments:
That would be very scary and threatening for me Julia, especially if that feeling of disconnectedness lasted for more than several hours. I am quiet about it then too. Do you have relatively short time periods when you return from a dream or even a day dream and say, "Did that experience really happen? Where do I begin as a person? Where do I end as a person and these altered realities become me?" Often, I touch the steering wheel and I am back again. At other times, for example in a deep trance-like state while half way to sleep, I say those thoughts are not mine. Is some other being or supernatural essence sending their thoughts to me? You must be very centered and self-reliant and trusting to keep a kind of panic under control for days and days at a time. I bet your counselor, psychologist, or trusted other person thinks and has probably said that you are a very flexible and integrated personality.
My own long recent acute episode with inflammatory lymphedema made me feel like you did. There was so much healing to do and my personal energy envelope and activities of daily living shrank enormously until I was housebound. After three months I'm gradually extending my boundaries again. Those boundaries will extend and contract depending on which illnesses are in chronic or acute stages and how many are in blessed states of remission for a while. I enjoyed your writing and sharing very much here. Thank you.
Wow. You express it very lucidly, regardless of the holes and exhaustion.
The brain is indeed peculiar and frightening when it malfunctions. I suffer from migraine, and when I was pregnant I couldn't take my usual drugs to moderate the effects and so was hyperaware of the process like never before- perhaps there was some interaction with the pregnancy hormones, who knows. I will never forget the migraine I had where I gradually lost sensation from my extremities inwards, until I was effectively out of body and my brain was failing too.
At its peak, I could not finish a thought. As a person who relies completely for her sense of self on words, this was traumatising, terrible, horrific. It's almost impossible to explain the feeling of getting halfway through a thought and losing the ending. I couldn't speak- not that it would have mattered, as I was entirely alone. That was 27 years ago, and it's still as vivid as yesterday (probably more so). The fear that seizes me every time I get the visual signs now is tremendous. It's not the fear of paralysis- it's the fear of being unable to think.
And so I think that gives me some insight into where you are. I hold you in my thoughts.
Thank you Aunt Annie,
I just wanted to make it clear that this was my experience from immediately after surgery up to possibly 4 - 5 months post op. I'm now 14 months post op and doing significantly better :) I felt I needed to get some of the earlier nitty gritty down though :)
I do very much understand what you've been through though, I suffered with crippling migraines from age 11.
Hi Frank! Good to hear from you again. It was probably 4 to 5 months before I felt back "in" myself properly. It certainly wasn't easy to keep a grip on the fear.
I really do understand about the parcels of energy. I keep pushing my boundaries all the time but have found that I absolutely must have 8 to 10 hours of unbroken sleep or my brain can not cope with daily life. Thank you so much for sharing your experiences :)
Post a Comment