Art, Procrastination and a Brain Tumour

I have an ‘art shed’ at the end of our garden. It was bought with the money I was going to use on continuing the second year of a part time art diploma. But instead we decided to make a permanent place to use for art instead.

It then got cold and damp and needed insulating and I did so, but struggled to spend the money on ‘me’ to fix it. It was all a ‘waste of time’. Plus I find one small problem with art- you want to stay there all day, which doesn’t work well with home educated kids and a family. Not to mention fatigue, where if I did too much I couldn’t handle the household chores on top very well, and so I procrastinated. 

Then in 2015, I started struggling to focus on the more detailed work. The last thing I painted , when I needed to outline it, I really struggled. My eyes felt they were wrong and blurry, so I changed it a little and made it more abstract, but silently gave up.

Then I got ill, then I found out I had a brain tumour, in my cerebellum- the very part that controls fine motor skills and coordination (amongst other things)… I couldn’t even see, or walk, straight.

The night I had brain surgery still attached to drips, I was holding my fingers together as you would hold a pen, trying to see if I could move my hand to write my name. Silently writing invisible signatures under the bed sheet. Crying. Wondering what I would do if I could never paint again. The thing that I love, yet the only thing I have always held back on. Scared of failing.

A few weeks later and while I could hold a pen ok, I would still write the wrong words, letters were in the wrong order or not legible. I couldn’t spell as I forgot how to spell words I knew easily. I had to sound them out in my head each time. Even forming letter shapes was sometimes hard, the fluidity wasn’t there, it was somehow broken in my brain. Yet I wrote. I scrawled notes that only I could have ever deciphered, and then typed. I hit the backspace far more than any other letter on the keyboard, often two or three times a word, as I kept typing the words wrongly, and spell check was ever so needed, but I kept going.

The colouring books I had bought before the operation to entertain myself I couldn’t do properly. I couldn’t see where the pen nib was properly and I couldn’t coordinate to keep the pen were I wanted- or even within the lines. It felt the most depressing thing to do, somehow torturing myself on what I now couldn’t do. Patience Jo, learn patience. I accepted that maybe I would only ever be able to paint abstracts from now on? But hey, people paint with their feet. I just need to give myself time.

A few weeks after my op, my son moved back here to live in my art shed- as somewhere cheap to live- followed by his girlfriend. Well it didn’t really matter as I couldn’t see it anyway, my world was still spinning violently, but all my artwork and materials got packed up (with me all but shoving it in boxes as I couldn’t see it correctly) and spread around the house, in the loft and under the stairs. By the time they moved out it was cold again, and I didn’t feel up to sitting in my art shed even if all the items I wanted were already there, and there was no way I could get in the loft or carry things as my body was too weak to do much. But I managed to tidy it a little and paint a couple of very abstract paintings- helping me release a little of my trauma with art therapy!

Then last March, my son and girlfriend moved back in! Once again the few of my items were tidied away into various boxes and corners of my house. I still wouldn’t know how I would be able to paint.

A couple of the times in the summer I tried using watercolours, or did a pencil sketch, but found it so hard- and even more depressing. I’d constantly go over the lines of where I wanted to go and it didn’t really help my confidence that I could do much.

So I wrote a book! I often couldn’t type or write correctly, but I kept going until I wrote seventy thousand odd words and edited and published the book myself.

From the person who often quits before she has started, I did it. I completed a whole book and got it printed 16 months after the date of my brain surgery.

Once I finished I got the desire to paint again, I ‘want’ to do work that is detailed- but who knows if I can easily or not? But mostly I just want to feel the paint on my hands as I work with the textures. Yet it’s October and my son is still living here, so I keep waiting… I’m getting good at that…

I was asked did I want my art shed after he moved out as after all I had not used it much in 2 years… and I almost broke down in tears screaming “it’s mine, don’t you dare take that away from me!” 

Although I am also a little nervous …will I be upset if I still cannot look at work in detail? Will I be able to do any work that I can sell? Or will it just be a large amount of personal art therapy?

He is moving out within a few weeks, then I need to find all the storage shelves that have been dismantled, the boxes of materials in the loft, the paints, the paper, the canvasses. So I have things where I need them when I want. I know it will make me feel grumpy as I hate doing chores I shouldn’t have had to do, that I will have to get others to help me (I still can’t climb in the loft) and it will be cold …

but I know my soul needs to paint. It told me to write quotes on canvas before I even had the tumour removed. I need to do it. To heal me. 

Negative days and dreams are OK

I’m sitting here and I don’t know what to write, but I feel sad. I feel there is nothing I can write that is positive… maybe I don’t need to be positive? 

Maybe I should just embrace the fact it’s OK to feel crap, hating the cold weather, the lack of sun, the dark evenings? Just accept the tears, that the leaves are falling off the trees, that things are falling apart?

I guess I could deal with it far easier if it was just for a few weeks, maybe even a few months, each year? But it’s 6 months. ½ a year. ½ a year of not feeling the warmth and healing from the sun when I need it.

I want to cry.

I want to move.

I want to live abroad.

It’s funny as the first time we went to Corfu (when I was 11) I just felt ‘at home’. That total peace inside – that my soul was home. I felt the similar in Majorca, swimming in the warm waters of the cove at night under the stars. Again when we went to Spain last month. That contentment inside.

How do I change it? I don’t know.

I just know I need to. Somehow.

Dedication to my Tumour

Today I had 2 notifications on Facebook that I looked at one after the other. The first said:

"I fucking hate brain tumours and everything associated with them." 

The second post was a quote from Sargent Johnny Joey Jones (http://johnnyjoeyjones.com) with a picture clearly showing him with artificial legs from above the knees, saying:

"People ask how I stay so positive after losing my legs… I simply ask how they stay so negative with theirs."

These two sayings are just it… the difference is us. How we deal with our situations we find ourselves in. I really do understand that one of the hardest things is to love ourselves- with ALL our faults and problems, but I only really understood what he meant by this quote after having my brain tumour.

Saying you hate brain tumours and everything associated with them, especially when you either still have one, or have had one surgically removed seems to me so very wrong. You are hating a part of you - what you are now, and with that you will always have pain. It feels the hate will always keep you having and focusing on symptoms from your "fucking brain tumour."

I learnt so many positive lessons from my brain tumour. It caused me to digest and really absorb all the self-love books I had previously read, understood, but not properly digested and were not part of me. The guidance in them just suddenly was in me, part of me. I got it.

You need to love you, to be able to totally unashamedly look into the mirror and be happy and grateful with all you have.

I am so thankful every day that I can do what I can do and although, yes I do get a little annoyed or frustrated at times with what I have lost. (and occasionally angry when trying do to something in a rush!) Most of the time I try to accept or improve things I need to do from a state of loving myself rather than hating myself for what I cannot now do.

As Anita Moorjani says very clearly in her books:

"You need to do all from a place of love- and that way miracles and healing can occur."

My brain tumour taught me:

That people I know care so much more than I realised.

As do people I didn't even know… Dr's and nurses who literally are there to help heal you.

Strangers who pray for you and send healing.

That our bodies are amazing- they can heal from so much. I mean - shit - I had my skull opened up, my brain fiddled with, but my body has healed itself. Yes the surgeons stapled me up, but my body healed and removed the swelling etc innately.

That we have an inbuilt strength, love and healing power.

That being 'you' and loving you, is the best you can do for yourself and your family

Happiness is a state not a place and you certainly can't buy it!

To listen to myself. (and action it)

Or as I put in my book dedication to my tumour:

"You almost killed me, but you saved me too." 

💗

 

                                   

Weekend of Synchronicity

Just woken after a very busy weekend of synchronicity …

On Saturday Dave asked me to put something back in the car that was parked outside the pub he was playing at ...and walking past my car with her son was Elaine - who had the exact same brain tumour removed also at St Georges with same surgeon!

I met her on line on a brain tumour support group - baring in mind I have only seen 3 other people online who have ever had the same tumour as there are only approximately 40 a year of them in UK!! 

Knowing she was OK after surgery was a life saver to me before I had my op…

But to literally walk into your 'tumour sister' you had never met was amazing!💖

Then yesterday Dave and I went to Kent to see his old boss (also a Dave) who had just got married and was having a mini music festival in his pub garden! Dave got the job with him back in 1995  (when he was unemployed after Adam was born) as his boss wanted to learn guitar and so Dave taught him to play…

And yesterday his old boss sung many songs he had written during the bad times in his life (when we lost contact with him for the last 15 or so years after his first marriage broke down) ... To me it seemed like the music saved him - he could express his pain through writing music. 

So Dave being employed by him and teaching him guitar might just have saved his life too! 

Here for a Reason

I am digging in the garden, slowly moving the soil with a trowel from the once sloped bank into a leveled flowerbed, and while I am digging I keep seeing a robin who seems to be waiting for me to throw him some worms. But this robin doesn't look like a normal robin, he has barely any redness on his chest and his head just looks like he is missing feathers or is covered in scabs or white patches… he either has some disease or had a very close encounter with a cat? 

In fact if he didn't act like a robin I wouldn't really be sure he was one. However, whatever the reason is for his scars 'scabby robin' is just continuing to do what he has to - which I assume is feed babies - and he is in my garden for days, waiting for me to feed him the worms and grubs that I dig out.

I take a picture of him and see if anyone on my Facebook wall has any ideas on why he looks so bad… they don't, but also assume he must still have a nest as he is constantly eating!

"He is eating the worms I have been digging...lots of them! and sitting about 1 metre away (but not when I have a camera)"

As I am watching him again I suddenly feel this, like he was sent here for a reason:

"I'm sure his head and neck has scabs on it so maybe he is 'my' robin. A slightly beaten up around the head with a few scars and war wounds, but alive, robin - just to make me smile 😊"

… the day after this realisation, scabby robin disappears… 

The Worst and Best Year

Not sure exactly what I want to write, but I just feel SO emotional. Like I could cry a river from all the emotions I feel right now, over the past year.

I don’t think its sadness – just enormous gratitude, relief, letting go of the fear, exhaustion (physical and mental), love, tinged with a bit of frustration as to why the world can be so evil and why others can’t see this way…

I finally got my driving licence back, hence I managed to go to FMG. (The group is energetically based on the pioneering work of  ‘The Journey’ by Brandon Bays and on the power of stillness for deep personal and spiritual transformation.)

I haven’t been able to go for a whole year and longed just to be allowed to ‘be’. Laugh, cry – whatever – it’s all OK! To be with others who ‘get it', get that emotions are OK and try to build spirituality into their lives.

It feels like I have sobbed since I let the floodgates open there. I still have so much I need to release.

Saying I had brain surgery still feels like it happened to someone else, but I have this fuck off great scar on my head, a hole at the front and numbness to remind me. Daily. Hourly. Every few minutes.

But the really, really odd thing is… that despite all those crap feelings, the lack of being able to discuss it, the whole experience when looked at as ‘one’ has been positive.

Or as the quote on Facebook said the other day…

"This year has been both the worst and best year of my life."

It actually seems a little mad saying it’s the best year – but I was given another chance of life. And that’s got to be celebrated!! 💖

Thing is, as totally terrified and scared that I was – I never thought that I was dying. Maybe I was and people never think that they are? Or maybe, deep down, I just knew it wasn’t my time? My fear took over at times – yes. I was so scared of what could go wrong. Numb from the shock. Had panic attacks so constantly that it seemed like they were normal days.

But after the op, that I knew I had survived it and had my angelic shadows in the room. I know there is something bigger than me, or what humans see on earth. We get support. There is a bigger plan.

I am still Jo

So it has taken me this long to put pen to paper again.

I’m not sure if it’s laziness or fear of crying a river if I truly feel the magnitude of emotions I have now and have felt over the past few months.

But I think I have had to shut part of me away, for I wasn’t ready to cope with it.

Only today, 7 ½ months after my operation have I dared look online at where the muscles, nerves and skull actually are in your head. I wasn’t able to look and deal with it before. And now I know – there is basically one big nerve running up the back on each side of your head. And mines been cut…

I didn’t realise this before or just after the operation (I’m not blaming the surgeon – he probably told me. I just didn’t listen. I wasn’t ready.) Only the day after the op did I realise they cut my neck muscles to get in my skull! (Ahh! That explains the huge neck pain and swelling!)

Yet I still thought the numbness up the sides and top of my head was an after effect of the op, but that it would go with the swelling. Damaged tissue or something.

But when I went back at 3 weeks he told me that the main nerve was cut. I would always have a numb patch, although the other nerves would try and compensate in time.

I know I should be grateful it is one of the worst side effects, but it was totally a bolt inside when he told me. I didn’t realise before, but I would never feel my head properly again!

It sounds stupid, but I had to mourn it. I was in shock. As he said it and the reality sank in, once again I was trying not to just be a blubbering wreck. I could feel my eyes welling up and I just had to bite my lip and not express the enormity of my emotions. But even as I was hiding the tears I also knew that I was so thankful for what I still had (The tumour had gone. I was OK) and not what I hadn’t now got. And the enormity of that gratitude also hit me at the same time, and so I wanted to cry tears of joy too!

And now…if I shut my eyes and relax now… I am still Jo. I can shut my eyes and still feel the same bliss inside, or I can feel pain. Sometimes the pain wins, sometimes the bliss.

Sometimes I feel it’s a circle of feelings: 

Itching – what feels like it is under my skull and I cannot scratch it. 

Tenderness – where I feel like I have a bruise near where the plate must be. 

Numbness – that if I lean on the ‘wrong part’ it feels like my whole right side of my head has an ½ cm thick layer of papier-mâché on it, it all moves and ‘digs in’ as one plate. Catching my hair makes it feel like this.

Nerve pain – where it feels like my hair has been ripped out and is sore.

Itchy scar at front – but the scar is too deep that I can’t touch it.