So I have
been a little quiet between my treatment post and now and for good
reason, I have officially returned to work! Something that even as
recently as March I really doubted I would physically/mentally would
be able to do! It feels like a massive step forward, i'm not gonna
lie its been super tough (as I knew it would be) but it certainly
feels like a fear beaten or rather beaten back (its still there a
bit) as it is the scene of the crime for my rupture.
Above is an artists impression of my first shift back
Its
probably been the most mentally tough thing I have had to deal with
for a long time, I was VERY nervous for my first shift back as my
confidence in both my body and brain is still at an all time low.
Pleased to say that my doubt in myself was unfounded, I did pretty
good and received compliments from my fellow managers as to how well
I am doing which is really nice and good for my confidence. To be
fair even I didn't know what I would be like at work, so for my
fellow workers I guess that was two fold!
I have
suffered a lot of what is called Neuro-fatigue lately which if you
want a better explanation of head here:
http://www.braininjury-explanation.com/unseen-consequenses-of-brain-injury/neurofatigue
Its
essentially feeling exhausted constantly due to your brain having to
work that much harder to just do normal everyday things. It's
difficult but due to feeling it a lot previously (when I was in
hospital and especially when I first got out) its something I am
aware of and am used to.
Sorry Dolly i'm not yet ready to work 9-5
I've now completed 5 small shifts back, all of which have left me dead on my feet afterwards but I have still enjoyed it immensely. If there is one (well theres many) over-riding bad thing about my type of injury its a feeling of disconnection with your fellow people, not just because of the cognitive/emotional difficulties it has given me, you suddenly find yourself feeling somewhat sub-human (or I have) because of your injury. I know I have always been a bit of an odd-ball which i'm cool with, but to feel less than human is a horrible feeling. I know its fairly irrational, silly even, but it still resides there unfortunately.
Between
returning back to work, relearning how to make music and subsequently
making said music I have again started to feel human again. I would
not go as far to say normal, but more like the me that I was
pre-injury, which is a confusing mixture of happiness and sadness of
what I really was like. My wit and humour (described by others may I
add) is still there but its just not quite as rapid fire as it used
to be, which saddens me but hopefully one day my old noggin might
repair itself enough to compensate. I still mourn for the old me, I
still get very upset at all I have lost but every little gain I make
now I appreciate that much more. Every little step back to becoming
something resembling what I was is a major victory for me, and I know
I enjoy the simple things much more than I did before, probably
because of the flirtation with death.
This is NOT what my social life is like anymore (or ever!)
Thankfully
relearning my music has been amazing for getting a lot of these
frustrations and feelings out in a form I can understand and relate
to parts of me. A feeling of emotional isolation is somewhat
commonplace in AVM survivors (especially ones I have spoken to)
which all things considered makes total sense, you've been put
through a horrific mental episode and then asked to get back on with
things which I guess nicely brings me to my next point.
Please
note this is not aimed at any one person, but its a point I feel I
must make just to get it out of my system
Someone
tried to tell me the other day that "you can't use that brain
injury excuse much longer" like now I'm out of the danger-zone
(mostly) I'm all healed. It made me laugh how little they could
understand of my situation, so I had a mental rant against them and
made a mini list of what i would like back which you can see below:
1) When my
peripheral vision returns
2) When my
fatigue stops,
3) When
my left side feels like it's part of my body again
4) When
my mind returns to something resembling what it was before
I will
happily drop my "brain injury excuse" until then I will use
my "excuse" and wear it like the badge of honour it is. I'm
a bloody survivor, no one will take that away from me. Until that day
happens, I will understand and try to make others understand.
Which
brings me to a slightly different but related point, some people have
said I am obsessed with my AVM, which I am quite happy to admit I am.
I feel if I was not it would be a dereliction of care to myself, but
keeping with my new feeling of rather than getting angry I feel I
should try to help make people understand, love is better than hate
right?
So I
mentally came up with a little analogy to try to explain the effect
an AVM has on you mentally so people could understand.
So imagine
someone real close to you, whom you have been friends with your whole
life, someone who has shared your hopes, your dreams, your successes,
your good times, your bad times, literally every emotion or memory
you have ever had turns around one day and tries very hard to kill
you?
You
remember the attempt quite well, you will never forget that initial
pain because it was that painful, the next weeks you have no memory
of, just flashes here and there. You know something incredibly bad
happened because you remember your confusing painstaking rehab
process. You remember having speech therapy because at one point you
could not talk. You remember the physical therapy because your left
side suffered so much. You remember the effect it had on others
because its written on their faces everytime you've seen them since.
Even if you don't remember everything, the attacker handily left you
with physical and cognitive reminders so you could remember
it.
So what
happens next? Instead of your attacker getting righteously locked
away as far from you as possible, instead it gets locked inside of
you, silently awaiting its next moment to strike. You are left with
full knowledge of this, that's why its called a “ticking time bomb”
you know that potentially even the most harmless of things you do
could cause your attacker to have another go, even when you're on the
fucking toilet (no man should die on the loo!) you know that the
attacker is increasingly likely to strike again within one year of
its first attempt, you know that you have little control over any of
it, other than trying to live as well as you can so the attacker does
not strike again. You are relatively young, you want to live but
inside there is an inertia crossed with a paralysis of “Is today
the day?” “If I do that will it kill me?” but still you try to
live your life and get as much enjoyment out of things as you can
because until the attacker is gone you truly do not know how long you
have left. That my friends is what life is like for me (and probably
many others I imagine) with an AVM.
Above is a man who DID die on a loo, not from an AVM though, poor bugger
Eek, I
feel bad if I left things there, but I really needed to get all of
that out of my head and written down. I would like to add in terms of
recovery I continue to improve, perhaps not at the rate I would like
but I am fully aware that my recovery will be measured more in years
than months. I still suffer day to day with headaches, confusion and
a terrible short term memory but I am beginning to be less harsh on
myself about things. I know I am doing my absolute best and thats all
I can really ask of myself, I am really enjoying being back at work
and being around people a lot more even if it has made me a slightly
less of a crazy cat person. Luckily I still retain the crazy!
My next
goal (other than my ongoing attempt at weight loss and trying to
write an album) is to slowly increase my working hours and even do a
couple of shifts in charge of the pub as I've mostly just been a
general bar-steward thus far (I am probably the biggest bar-steward
in the world!) so that will be challenging and something I am looking
forward to seeing if I can still do that aspect of my job, fingers
crossed I can! Other than that I need to concentrate on being happy
and alive, I have recently had a tough patch emotionally and mentally
no doubt due to being a bit run down, I need to remember that is
normal as a result of the beating my brain has taken and the beating
my body still takes ha!
Thats all
from me for now.
Merci
Adam x
