Today is the 11th March 2018, Mothers Day to some yet to others it marks a more poignant and bitter sweet day – it marked the 3 year anniversary of a long time friend of mine named Marti who is non binary – which is an umbrella term for all gender identities – who lives with his girlfriend (and pets) in the UK but even more special is he is someone who had brain surgery, limited chances of survival but despite the odds lived. He’s also started to talk about his life and share himself with the world – which is both brave and incredible and in this blog post will be touching on a couple of subjects important to him.
I haven’t added photos of the surgery as some would find the images distressing – regardless they show true strength of will to survive. Also lets not forget people don’t choose gender identity, disability, sexuality, mental illnesses, race or appearance so let’s try to spread unique stories and perhaps learn to see in different perspectives.
First of all I would like an introduction of yourself please – what do you do for a living, age and interests?
So, I’m Marti, I’m 29 and I’m a Senior IT Technician at an IT Consultancy Firm and I’ve been employed there for over 7 years. My job involves providing software and hardware support to business and domestic clients – one day I can be in the workshop setting up new systems, repairing or replacing hardware etc yet the next day I could spend all day remote accessing a client’s server troubleshooting a single complex problem or accessing various clients troubleshooting, so work is seldom boring. Outside of work my other interests are science, history, music (specifically guitar), fashion, makeup and animals.
Do you find your job fulfilling – with a background in music would you of preferred to of gone down that path or is that more of a pot luck shot do you feel?
In the age of the Internet it’s much easier to get music out there and if it’s good enough people will listen. With good social media work, just like blogging, eventually musicians can build a following. I’ve watched YouTube musicians do this over the past few years and there are a number of fiercely independent artists that are doing incredibly well that way. So, I guess it’s always an option for me but I don’t really feel my writing or performance is of a standard for such things.
This could just be confidence thing but I never was much of a performer – I found my skills are much better suited to teaching.
You’ve mentioned to me in the past about your brain injury you suffered at the negligence of a GP and previous physical symptoms you have, for example, being born with cataracts and potential marfan syndrome do you feel this hasn’t enabled you to fulfil your potential with either confidence to mental health to showing who you truly are? By this I mean does any disability either enhance your character or undermine it?
So I was born with bilateral cataracts, meaning that cloudy lenses in both my eyes – this either didn’t show or was missed at a minimum of two routine screenings so this meant it wasn’t picked up till I was much older than I should have been, over a year causing lots of damage to my long-term vision. Growing up I was always different to the other kids due to my vision, sometimes I would be unable to wear my contact lenses meaning I’d have to wear really thick glasses, I’m talking thicker than the bottom of a jam jar thick! Then during school I used to have a helper – writing down information that was written on whiteboards, special equipment etc. It made me stand out and I got bullied for it so that probably had an effect. As I got older I became incredibly conscious of my glasses, opting to not be able see rather than wear my glasses, I couldn’t handle the comment I would get like “Wow, your eyes look huge.” As a result it sort of learned to hide away from people more and more and I’d say by time I was in secondary school I was struggling with fairly severe anxiety and depression.
What really happened to lead you to end up having brain surgery and what are the results you’ve seen since?
It all started New Years Eve 2014, I felt like death, I mean absolutely awful pain around my eyes and my head and it was so bad I ended up going to the emergency GPs, they weren’t to sure what it was, suspected infection of some kind. It carried on and I kept going to the GPs a lot, which was unusual for me. Eventually the Doctors decided it was sinusitis which clinical guidance tells them is 99% viral and not to give antibiotics. Mine wasn’t, towards the end of January I started to get fever symptoms along with pain, which had been on going since new years.
Then on my birthday, 28th January, I went to the Doctors again, I had an elevate temperature but was sent home at about 18:30 ish, 00:30 I was in Grimsby A&E on the advice of 111 service, A&E admitted me to hospital query meningitis.
It eventually turned out that I had sepsis and I was in hospital for 5 days. I left hospital on antibiotics and completed the course.
Throughout February I continued to experience pain in my sinus and the GPs gradually gave me different drugs to deal with the pain which carried on throughout February and on the hospitals advice I quit smoking and did everything I could to help it heal.
I can’t say to much on care I received due to legal reasons but this is the point where I feel things went wrong – I woke on 11th March and my right arm was weak with what I though was pins and needles but it went off so I assumed I had just slept funny. I got on with my day, I think I had a quit smoking appointment, I think I must have been acting slightly oddly as the woman I saw kept asking if was ok but I thought I was fine so I went home and set my mind to playing guitar I was planning on working on university assignments that day. As I was playing I started to drop the guitar pick and couldn’t play properly I spoke to my partner and she told me to ring the Drs who told me to go straight in. I walked myself to the Doctors again, when I got there they took me straight into an exam room and were very concerned, they checked me over and thought I’d had a stroke at the age of 26. It was at this point my symptoms started to get and I started to vomit, the weakness started to spread to my right and I started to struggle to think of words. I was taken in ambulance to Scunthorpe A&E.
Scunthorpe A&E performed some tests such as a CT scan and blood tests then and after a few hours they discovered that my condition was incredibly serious and they didn’t have the facilities to treat me there. They had discovered two subdural abscesses, so I had to be blue lighted to Hull Royal Infirmary, which was the nearest centre with the skills to treat that. At this point I was in an out of consciousness so my recollection of events is somewhat fuzzy.
I don’t know how long I was at Hull for, I don’t remember the ambulance ride but I do remember signing a consent form for the surgery and being told that my odds weren’t great. This may be some what paraphrased but I was told that without surgery I would die, with there was a high chance of dying on the table and if I did happen to survive there was a massive list of potential permanent problems I could face afterwards; for example inability to speak, paralysis of already affected body parts etc. At this point I kind of hoped that I would die, I didn’t want to live and be paralyzed, unable to play guitar.
After surgery I was fairly quickly able to move my leg again and I had some control of my right arm so that was comforting but I couldn’t even cut food or hold a drink. I had to train using clothing pegs picking them out and clipping them onto the side of the basket and a stress ball for weeks to get everyday usage of my hand back. It took several months before my guitar playing return to what it had been previously but I was able to play simple things after a week (I had my guitar taken into hospital). I was in hospital for a month following surgery on IV antibiotics to ensure that there was no infection left behind, after 2 weeks they transferred me to Grimsby to be closer to home. I didn’t return to work after this till March 2016 but I did manage to complete my degree, I received a 2:2 classification in Creative Music which is too bad all things considered.
I would like to add you’ve been very brave facing anxieties and fears over the acceptance of others and within yourself – why is it now you’re beginning to show the ‘real’ you?
In January I realised my mental health had gotten really bad and I realised if I didn’t change something I was going to carry on being this low or up down the rest of my life. I’ve nearly died once, I should be making the most of my life as it was so nearly over once, I am acutely aware of just how quickly everything can change and now its time to live.
At what age – if you recall – did you begin to notice you wasn’t like a stereotypical male?
I remember being as young as 4 or 5 being jealous of some girls outfits when we had none uniform days at infant school and that. I remember an occasion in a shoe shop once, I can’t remember how old I was but I really wanted a particular pair of shoes and kept being told I couldn’t have them. They were fashionable at the time but I can’t really remember what they look like now. This argument went on for a while and turned out I couldn’t have them as they were girls shoes. I think after that I kind of steered clear of feminine things till I was much older, it was always there but I tried to fit is as a regular male, I even remember trying as hard as possible to make my voice deep and manly. It didn’t work trying to be normal and by the end of secondary school I was self harming. When I got to college I started to explore my feminine side but I made some mistakes I trusted the wrong people with the information whilst I was fragile. So it always remained a sort of badly kept secret until now.
Thankyou for being brave enough to share bits of your experiences – it’s amazing to start to grow in yourself and character. I hope it breaks some barriers of ignorance and that you continue to carry on shining!