5

Colour me in

“Music was my refuge. I could crawl into the space between the notes and curl my back to loneliness”

Maya Angelou

I’ve always loved music. My pre brain injury days were always filled with it, from my teenage years of feeling like it ‘spoke’ to me and soothed my angst to my maturer years of listening and learning and escaping through the gaps it provided. I think it was Jimi Hendrix who said there are only two types of music – good and bad, he was right of course but this definition is subjective for each and every person. What I like is good and everything else is bad. I have a varied taste and like many different styles (I am however firmly stuck in the 1990’s for a lot of my listening preferences). There are those I have carried with me from my youth such as Nirvana and Pearl Jam, those I discovered a bit later and those I am still discovering today.

What I love about music is that it’s universal, it cares not about your gender, colour, creed, age, sexuality, whatever. It speaks to us all in a voice we all hear differently. I have music to suit my mood, I can flip from Nick Drake to Ella Fitzgerald to Rage Against The Machine and each one will take me on a sonic journey somewhere familiar and comforting (or not very comforting at all sometimes).

I write each blog post with a song at the end and the title is always a line from the same song and it’s always one that gives an idea of where my head is when I write. I make no excuses if this post becomes whimsical, because music is hard to write about from a feelings perspective without slipping into a bit of whimsy.

So here comes the bit where it gets a bit strange. For months and months after my injury I couldn’t listen to music. At all. I couldn’t even physically sing songs in the shower, not through any obvious physical impairment but because I just couldn’t get it together, my body/brain didn’t want me to. I drove my car in silence, no more musical accompaniment. My CD’s gathered serious dust and my Ukelele and guitar were left untouched. Now this could have been because EVERYTHING felt like it had been sucked out of me into a big black vaccuum and all I could do was stare and sleep. Or a part of it could be because music was too triggering for me, it was too rooted in my emotions and my brain was saying ‘no, none of that yet for you young lady’, maybe it was a combination of both. Who knows? All that I knew was that my world had become very still and very very silent.

Then there was a breakthrough, one day I started listening again but it was in very short bursts and it didn’t seem to have any emotional effect on me whatsoever, I’d lost my connection with the one thing throughout my life that had been a constant. This rumbled on for some months, I listened but it almost felt like a marriage that had run out of juice, I’d be present physically and showing all signs on the outside of being a ‘good wife’ but my mind was flat and cold and empty. It was horrid. There’s music I cant really listen to now because it reminds me of that period of time and feels so desolate and uncomfortable.

I persisted though and found that as I slowly came back to myself, the music came back too. It’s still not fully intact, I have a narrow window of stuff I can listen to but it’s back and boy is it back with a vengeance! ¬†There is one musician I listen to that, throughout his career I have remained with and that has been one of the few that didn’t seem to get affected by my flat state and that is Mr Damien Rice (not everyone’s cup of tea but I don’t care!). He has been with me every step of the way. When I listen to Damien and a few select others I go on what can only be described as the most magnificent journey, it’s like turbo charged music love. The music paints pictures, it wraps me up in a wonderful melodic blanket and whisks me away somewhere. I can almost touch the notes and words as they dance around me. This is no exaggeration, it is the strangest, most wonderful thing I have experienced, I get a bit, well, high off it. I told Dr L about this and he said that its a new one on him! Not only that, I cry and laugh and sing along at the top of my voice. I cry and laugh like a person who is shedding the deepest, darkest, heaviest pain but you know what? I feel AMAZING afterwards.

So Dr L my wonderful neuropsychologist who I no longer see told me at our last appointment to use music as a tool to help me access the emotions that I shut down initially, he said it will help me balance things out again. Maybe this is why my brain made me flat initially because of the sheer volume of what I had to feel it wanted to make sure I was physically a little stronger first. I have no idea why music affects me so much now, maybe it’s temporary, maybe it’s because my frontal lobe with my mood regulator has gone a bit askew or maybe it’s because now I’m much more in touch with myself and less embarrassed about being a human with emotions. Quite frankly I don’t care two jots about what others think of me anymore and that is very freeing.

So I will leave you with a song from Mr Rice and the one that started a wee discussion about this on my facebook page.

 

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6

In my shoes, walking sleep

I’ve been wanting to write a new blog for a while but lacked any inspiration or motivation to get going on it. Also things were humming along quite well so I was doing things and generally making hay while the sun shined. A number of things have occurred recently that have given me the impetus and material to get something down on virtual paper.

I’m currently in another relapse of my anxiety symptoms, whilst this is highly inconvenient and frustrating I’m still functioning, at a slightly reduced level but functioning nonetheless. This brings with it a reemergence of fear, terror on occasion, trembling, crying at points and the old favourite – racing obsessive thoughts. I come at this all now from a point of view of knowledge and familiarity, I know what this all is and that at least makes it more manageable. It doesn’t mean I’m enjoying myself, it still stinks but its not overwhelming.

As always there has been a trigger for this and this is my main reason for writing today because triggers are a funny thing, they are not always necessarily ‘bad’ things and the effect seems to arrive days after the actual triggering event when you’ve forgotten all about it and are wondering why you feel funny now.

The past month or so has been great, I had lots of ‘good brain’ days, feeling upbeat, positive and my energy is getting even better. Hooray! Then my appointment to see the neuropsychiatrist came through, this was made to help me get a handle on my moods and anxiety but I seem to cope with this myself now better than I used to. I went anyway with the aim of talking about a funny sensation I’ve been having for well over a year now that other health services have kind of ignored and something which I myself wrote off as fatigue. I call them my ‘slumps’ they happen throughout the day and have varying symptoms similar to anxiety but they are quite overwhelming and make me tired. They vary in intensity and sometimes don’t occur at all. When I first started noticing them they used to last for hours and cause distress, my face would feel hot, my eyes would feel heavy and I’d end up crying from a rush of emotion they caused.¬† Now they are less intense and a lot more manageable (this is good news).

So I mentioned these to the neuropsych and said I have tried everything to figure them out (blood tests for EVERYTHING, napping, powering through, vitamins, howling at the moon etc) but there seems to be no explanation yet and I’m quite frankly getting a bit sick of them because they eat into my day. I suggested as a last gasp that I’m concerned they may be an issue with my Temporal Lobe caused by the brain injury. He said it’s a possibility but the fact they are improving is a good sign (I dont tend to get them on days where I’m relaxed and happy so this also could point to them being mood/psychology related, a last remaining crumb of trauma in the body perhaps?). But he said there’s no harm in getting it checked for my peace of mind and just to see. So you find braingirl waiting for an appointment for an EEG and a CT scan to look inside my noggin and check for gremlins.

EEG

If there’s something there its easily solvable with epilepsy meds (which I’m already on) but that doesn’t stop the old voice of doom chattering away telling me all is lost. He also warned me that there could be no reason and that it’s unexplained so I may just have to accept them for now for what they are. I’m prepared for all this as at least it crosses something off the list and I know my brain is ok. Hospital appointments, brain scans, health anxiety. BING BONG TRIGGER NUMBER 1.

I left his office feeling good that something was finally being done, feeling quite optimistic off this I decided to go and do one of my tasks which was to enrol at college, yes, you heard it, I’m going back to school in September. I’m doing a Counselling course, I was nervous about being in the building and even though this is an extremely positive step it is PETRIFYING. People, noise, focus, expectation, studying eek! BING BONG TRIGGER NUMBER 2.

I also signed on the dotted line for volunteering at a local open farm, I love the outdoors and animals so this was perfect for me. Again, noise, people, expectation, being out of my bubble. BING BONG TRIGGER NUMBER 3.

Add to this the delights of a particularly horrendous episode of PMT and we have Hurricane Anxiety approaching from the East.

So yes, I’m feeling a bit rubbish right now in a bit of a daze, worrying, but I know why, I’ve pushed my limits in a positive way and it has impacted on me by my brain trying to make me retreat back to the trenches again. UNSAFE! UNSAFE! YOU NEED TO HIDE QUICK, THE WORLD IS SCARY BRAINGIRL, LOOK WHAT HAPPENS WHEN YOU DO THINGS, I TOLD YOU TO FREEZE AND NEVER MOVE AGAIN!!!

I’ll bounce out eventually but for now I’m scared again and that’s ok, It’s ok to feel what I feel, I don’t punish myself for these things anymore.