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jennywarhurstsmith-blog · 7 years ago

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Manifesto(es)

I’ve got a multiplicity of ideas about what I want this blog to reflect and record. The ideas which I’m hoping to put down aren’t solid. Even as I’m starting to channel this manic burst of inspiration (thank you late afternoon coffee paired with IMing Jennifer Taylor for madcap blog title ideas) into an introductory post, I’m getting distracted by my Dad arriving home from working at his friend Geoff’s and wanting me to talk to him and help him pick raspberries from the garden, on this very grey afternoon. So all I can do is to tell you now about how I feel today, and what I want this to become. And why I’m nervous and finding this so hard to compose.

I’ve got brain cancer, and it can’t be operated on. And that’s the first and biggest fact I am going to reveal about myself. The shadow on the scans creeps over my whole life, and it chokes all of the ideas that I have and checks my ambition. It stunts the growth of the flowers of poetry. It comes knocking at my doors and my windows insistently, carrying an insidious bouquet of chronic fatigue. Today it’s a mild headache, a compulsion to sleep. I don’t know where my illness is going to take me, or stop me from going. It is from a sense of confusion and flux that this blog will begin to take shape.

The beginning of this blog came from a few different places. Firstly, I guess, there’s the fact of my new feeling of impermanence. For a while, I really did feel like I could just die at any time. And although I’m still more aware of being weaker than I was, I have begun to rationalise this idea of frailty against comforting ideas (although bear with me, because they are very morbid…)

Every day, we do things that have a risk factor just to survive. And that’s why although I can accept that I have cancer and that as a result I get more tired more easily and I struggle with big gaps in my memory and concentration, I refuse to accept that I am closer to death than anyone else. I’m simply not. I’m sick, yes, I’m maybe a little weak, yes, but I’m also just as likely as you to get hit by a car or choke on my next (illicit, sorry Slimming World!) chocolate biscuit or even trip and fall in the canal. So I’m going to do it. I’m lighting a fire under my own arse and committing a gross act of creation, I’m going to indecently expose my innermost thoughts to the world. And I’m going to do it in a way which reflects the hormonal rollercoaster of emotions which has definitely sped up recently, but has really always been a part of ‘Jennifer Louise Smith,’ as my long suffering friends and family can attest.

Lovely Siân of the City Hospital Teenage Cancer ward is responsible for this particularly madcap and infuriating mode of self expression. She began the whole thing by giving me a scrap book early on in the phase when I was first beginning to gain an awareness of what was happening to me. I made a lot of progress early on, but as I began to get busier, this format began to suit me less because firstly I was filling up my days by leaving the house, and secondly I was becoming more self aware and self critical. Quite often I find my artistic skills lacking. However, I’m hoping that the early style I was developing which was really mixed media and responsive can continue, because my artistic inspiration really does come from all sorts of sources less obvious than just the books that I read and my day to day life.

That’s the other reason behind the mixed up format I’m hoping to embrace. Around the time when I first received this scrapbook (which I hopefully titled ‘I AM MORE THAN MY ASTROCYTOMA’, which became darkly funny because I was later re-diagnosed with Multifocal Glioma….multi….as in there is ‘more’ than an astrocytoma…) I was still really struggling from the most surreal aspects of the tumour and associated raised pressure inside my skull. I was having big memory blanks, some of which I still haven’t been able to re-obtain (something which frustrates me, and is part of the reason I’m constantly writing down every scrappy idea that paddles through my brain) and I was also having some slightly trippy and surreal experiences. Those issues have mostly resolved themselves and I’m much more acquainted with the here and the now and the rational and the solid. But I feel in some way the strangeness of those experiences is something that I really won’t ever be able to forget, and that the experience of losing parts of me has changed something essential about me.

For a long time, I couldn’t have concentrated for the extended periods of time that any type of blogging would recquire. Let’s call this my goldfish phase…due to the problems I was having just with every day life, I was referred to a wonderful occupational therapist called Zandra, who has really helped me to look at methods to improve my life not only in terms of getting back to work but really at helping me be at one with my personal circumstances once again. It’s hard to hold onto anything in a concrete way when you can’t even remember what you’re doing as you walk from one room to another. Perhaps I’ll include some of the things which Zandra encouraged me with – one of the first being these big sort of day planners that my Dad was writing for me around Christmas 2016. These planners/journals were a way to check and record myself and try and replace my memory. It’s from these early ‘diaries’ that new ideas developed.

Zandra also really pushed me to think about the future. The way that this episode has positioned itself in my life is beautifully ironic (though not to all parties involved, just to me, Miss Morbid.) My most dramatic symptoms coincided with the end of my time at Sussex University, and my collapse and first admittance into hospital happened as I was undertaking a liberation graduation Eurotrip with my American friend Amanda. So all of this happened just as I was about to leave education, as I was about to become a fully fledged adult and begin to experience life for myself. I wanted to make concrete roots and career successes. I hoped for boyfriends and travel and excitement.

It’s difficult not to sound dramatic when I touch upon how these things aren’t accessible to me now, like they felt that summer in Amsterdam and Berlin with Amanda.

Still, maybe this could be the start of a new future. And if it isn’t, it still feels wonderful to begin to re-organise my thoughts in a way that other people can understand.

I’d hoped to be a teacher some day, but I just don’t have the ability at the present moment to be reliable. Due to my medical issues I wouldn’t be allowed to learn to drive. I feel for the same reason that perhaps I would no longer be able to take responsibility for a class and teach. So when I was finally coming back to myself and Zandra was helping me come up with goals, I had to refigure. Because I am not the same girl who was travelling with Amanda. I’ve shared a lot of experiences with that previous Jenny, but she doesn’t know me anymore. What I know now is that some parts of me are fragile but simultaneously resilient. And I have interesting and insightful things to tell people because of what has happened to me, but I also still have a lot to learn.

If I’m not going to be able to teach, maybe then I can pursue less practical career paths without feeling like I am being selfish and not giving back to society. Perhaps the most generous thing I can do now is to recover as best as possible in order to bring peace of mind to the people who care about me most. In a lot of ways this entire work will be dedicated to my family and all of the things they have always done for me. My mother in particular – I just CANNOT express how grateful I am. Even if I was to fill a library with the word ‘Thank-you’ it couldn’t begin to tell you how thankful I am for my family and my friends and everyone else (medics and counsellors and members of the public) who have all contrived to create a new niche to cradle me in and help cushion my return to lucidity.

So although I feel my oxymoronic noble-selfish wish to teach (selfish because it allows me to remain in academia) I also know that I’m probably not currently reliable enough to take on students – a student-teacher relationship is one where the tutor must be available to the student first and foremost, and I feel that a lot of the time I’m just not mentally THERE. This has left me a fish out of water – where do I go from here? I’ve also lost the ability to travel the world independently, which was another huge motivation and a dream for the future. Yet while my world is shrinking, I’m also feeling the strangest kind of zoom effect. Everything seems to carry more significance and beauty than it did before. Sometimes I feel like a receptor for nature. Other times I feel like a lump, and an undeserving one at that, because I don’t really contribute anything to society at this moment in time.

One of my strongest convictions is that creating optimism and drive in your immediate life moves outwards from you like the rings created by dropping a stone in water. This butterfly effect is all I can have for now, so I may as well take all of my frustration and devastation and turn it into something. Anything at all! Its better that I’m sat here expressing this big lump which sits between my heart and my throat than just letting it catch every time I sit about listening to other people rather than speaking my mind.

A lot of the time, that mental voice is just screaming YOU HAVE CANCER YOU ARE DYING over and over again. It’s not a thing that’s easy to ignore, but it’s something I have to put into its box and just let it stew. I can’t look that thought in the eye.

So much has become unreal recently that I find it difficult to explain simply to anyone what it is exactly that I’m feeling. I’m going to put a positive spin on it for the purposes of this blog post, however, and just say that although I can feel my limits, and they never go away, I also feel liberated in other respects because something as simple as getting out of bed and getting dressed has become a victory. I can be proud of myself for not giving in. And in that way I’m hoping to use this adventure in journaling as a way to celebrate all of the interesting outcomes of a really cruddy situation.

Yes, my writing makes me cringe. And I’m already critiquing myself and second guessing every single word choice that I’m making. And I do intend to edit and refine the work that I create and publish on this blog. However, I also want to show resilience and ambition. Being so physically weak has helped reinforce how much I really do love reading books and how much I’d love to continue to study. I keep getting this idea that I could succeed in a creative writing course. Perhaps this will be the very first chapter of that narrative.

I don’t want to give up anything more. I’ve given up enough already.

The use of this format, the blog, is a substitute for an ideal format that I’ve been thinking about a lot over the past few months. I’ve been struggling to describe exactly what I want this to look like and show, but I haven’t generated all of the content I’d want to be contained within it. So this is all a work in progress. That’s part of the reason I’m calling this post ‘Manifesto(es)’ – like an avant garde artist I want to set out to explain to you what exactly it is I want to show you, because I’m not yet certain how I’m going to execute it, and I may even need your help to make it possible.

I can’t get the idea of the spider’s web out of my mind. Having such pervasive cognitive issues, these big gaps and misty confusions, I spend a lot of my day trying to re-create arcs of thought which have occurred, bursting into life then fading back into the general miasma of my brain. The only way I can think of to describe the way my brain feels is to picture that old secondary school technique, the mind map (or sometimes known as a brainstorm). By linking ideas, memories, pictures, photographs, messages and factual information, I can mimic the paths which my thoughts have taken, and use them to build new ideas and create a new memory artificially. For a very long time now I’ve been keeping notes of all sorts of abstract ideas on paper, on my phone, but now I’m becoming engaged with society again I need to be able to explain them to people, to make this ‘second brain’ a physical thing that I can access. It’s a sketch of my brain. I wish I could sketch it, perhaps using a computer programme to make it interactive? However, I don’t yet have the skills. My solution in the meanwhile is to use the popular medium of the hash tag at the same time as the standard chronological blog format. In this way, I can keep a diary which is multimedia, which chronicles my recovery, which allows me to edit and curate what other people can see and will also help me develop. Because perhaps, if I can become more confident in my ability to express what my brain is trying so desperately to make known, I can recover myself.

Because that is what’s breaking my heart about my illness. It feels like the border between me and the rest of the world has been damaged. Nobody else quite gets me anymore. I’m me, I’m vivacious and silly and embarrassing...but I’m also this fragile brain damaged train wreck. Sometimes I feel like I’ve lost so much, sometimes it feels more like I’ve learned from this experience. But always, it feels insular and lonely inside my skull. And even this, thinking about my thinking, is cathartic. And I’m hoping that eventually this blog can help me feel like Jenny Smith again.

Manifesto{es} is an unashamedly pretentious title for an early blog post, but I’m hoping to keep writing new variations on these explanations, and keep adding to these ideas. And I’m also going to add hash tags to the blogs I write in order to show the secondary methods of sorting and linking the ideas in my brain. Over time, I’m hoping this will create a structure to model the way my mind works and perhaps to solidify the changeable. However, only hard work and time will allow me to live out this experiment. So I’ll sign off here, and start to input old thoughts onto the blog. I’m going to try and back date as much stuff as I can, even if it doesn’t yet seem relevant. It’ll help assuage some of the fear I have of losing the little memories I’ve recovered. And perhaps it’ll even help me build up my creative impulses, and become a half decent writer. So the way the new structure is going to work is that I’ll sign off each post with dates and times, and if I go back I’ll acknowledge the changes. It reminds me of Joyce’s ‘Trieste, Zurich, Paris 1914-1921.’ This is my palimpsest, my monument of sand shored against the tide:

Written on my laptop from my bedroom, 3rd July 2017, altered from a piece started 27th June 2017

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