I’m up at 1:46am and I feel weak – this is my normal and has been for years so to try and convey it to someone who doesn’t feel this way is a little tricky because I have to dig deep to remember ‘not-weakness’. The process of thinking back makes me feel my age. I’m 30. I’ve always been a reflective, sensitive little soul – gregarious at times but always, always, periodically requiring retreat to collect myself and just, ya know, think.
Right now I feel dizzy like if my body had an energy field around it, it’s being swooshed around like clothes in a washing machine, my vision is blurry, crawling sensations cover my legs and I feel like gravity is stronger than it should be so holding my head up, sitting upright to type, requires conscious effort. My left hand is tremoring between keyboard strokes, there’s a dull ache in my right chest from where we inserted the weekly port needle for my IV therapy. How am I doing this blog – why even? Well I’ve spent the last few days in not the best shape and today, despite the symptoms is relatively good by comparison. I had a flare of symptoms a few days ago where my brain seemed unable to connect with my legs in order to walk – I lurched to the side and also had trouble speaking. I’ve had trouble walking and speaking before but more from fatigue and weakness whereas this was neurological. I’ll admit it was very scary but not unusual for those with this disease and a few friends assured me they had experienced the same. It helps to know you’re not alone though I wish none of us knew this feeling.
So here I am listening to 90s rock and writing – the emotional energy and joy it gives me is enough for now to distract from the physical issues. Red Hot Chilli Peppers at the moment… here’s some trivia: first song of theirs I ever heard was Soul To Squeeze. I’m a really visual person, I remember a lot from my childhood going back to age 2 and have verified these memories by proactively searching out stuff online – childhood shows I used to watch repeatedly that I had on video (remember those!) and scenes I remembered that I retrospectively found by linking key words to my visual memories and then googling them – so I can date it back to age 3 for shows but my mother has verified earlier memories.
I can still see these images like photographs in my mind from my childhood: the time I nearly drowned around age 2-3 at the pool looking up at the swirling water above my head, snippets of story books, and music videos. I was obsessed with watching the music video show Rage every morning in the early 90s when I was about 5years old. Radiohead’s ‘Creep’, Madonna’s ‘Rain’, Haddaway’s ‘What is love’, R.E.M.’s ‘Losing my religion’ and Red Hot Chili Peppers’ ‘Soul to squeeze’ amongst many others. I was fascinated by the carny theme by the RHCP’s song and can still see the snakes around Anthony Keidis’ head. Would you believe me if I told you I still feel an echo of how I perceived those images when I look at them now? I saw a story book my mother read me as a very young child called ‘Peepo’ some years ago as she’d bought it for a friend with a new child and when I looked at the pictures I had a strong deja vu feeling – a recollection of looking with a different perceptive lens – one far less cerebral and contrived…just looking. It’s the closest I can imagine to going back in time, but not geographically, rather inside myself.
Maybe everyone gets this but I don’t think so – I was listening to a radio program a few years ago where they were discussing childhood memory and how many adults don’t remember much below the age of 7, or 5, perhaps. But now as I get older, even my teens feel like another life. I’m not sure if this would have been the case so much if I wasn’t ill and ejected from the previous rhythm of my life for the last 5 years. I’ll never know except when I speak to others who are chronically ill they frequently mirror this experience of feeling like this is a different life, like their previous self has been severed from them in a sense. It’s a violent experience in that way – violent to the sense of self, place and identity.
So I often turn to 90s music when I need comfort because in a way I feel it anchors me to a better time in my life – I’ve had non-health related challenges, I thought I was pretty tough actually before I crashed with Lyme Disease in my early 20s – I’d lived through a fair bit and felt I’d grown a lot and was a stronger person for it but nothing could’ve prepared me for this particular nightmare. So when I listen to old music I feel connected to my old self – a time before lots of pain and struggle, a more naive but exuberant time. It soothes me, I feel I can move back to an emotional space when I was lighter and life felt exciting and full of possibility. And I need that feeling, because nothing in my life has warranted it really for years now.
In many ways I’m grateful for my high visual memory and the significance it has for me personally. I often draw upon images, like photographs, of really happy times, moving times, empowering times. Unfortunately I have strong memories of tough times too but I can choose where I direct my attention and I choose to revisit the positive images.
When I’m stuck on the couch or in bed I can go back to my travel memories when I had the privilege to just tour the world for 9 months at age 19, 7 of those months on my own. I didn’t have a lot of money so it was quite an ascetic experience but I am so grateful I had that under my belt before this illness set in. I can see Montreal, Canada -the old part of town and walking through the streets with a US Army guy who took a shining to me and followed me around…he’d always stand on the roadside of me like a protective thing. I’d never experienced that before but when he later showed me footage from their barracks on a little portable camera and an explosion site from a grenade I understood it was hardwired into him to be alert, even in beautiful, peaceful Montreal. I can see snow in Paris, France – me and my friend laughing staring out a window into the grey montmartre steps falling away to the side of our hostel, an older woman walking down oblivious to our unabashed voyeurism above. I can see the glow of street lamps over the Charles Bridge in Prague and remember crying laughing at an amateur musical theatre production with my best friend and two other Aussie travellers we met at our hostel. I can recall skipping for joy on my way walking down the hill home to my share house after a great night out drinking wine, talking shit with friends and enjoying good music at a local bar that held live gigs and served mulled wine – thinking in that moment that I was blessed and so happy to be alive.
I am still blessed to be here but there’s not so much spontaneity, not so much freedom. Being born into a developed country as a young white daughter of a working class family – I did well at school and then university, I’ve been fortunate in the life lottery stakes. I know that. Until this illness took hold I had hoped to gain a measure of security for myself through work but I always wanted to give back too. I wanted to be a humanitarian as long as I knew what that word meant and as soon as I realised that some people suffer through life more than others and not of their own causing – but because they didn’t win the life lottery. Maybe they were the child of a drug addict and were born coming off heroin because their mum ‘used’ through pregnancy, maybe they came into this world the child of a family in one of the slums of India or in some other situation of dire poverty, maybe they grew up in an affluent family but experienced domestic violence. My own appreciation for the good times in my life came from understanding the possibility of bad times, and crucially I believe, the absence of any sense of entitlement to my life circumstances. Who knows why we are born into the lives we inherit?
Now my life has legitimately taken on a difficult turn and it hasn’t escaped me how oddly well equipped I was for this level of challenge with my worldview before I crashed and lost my health. I haven’t ever really struggled with the unfairness of it because shit has been happening to people for time imemorial and the fact is I was unlucky to be bitten by a tick carrying numerous infections, I was unlucky but not unique. People are unlucky every day. In fact the timing of my diagnosis was very chance and fortuitous so in that sense I feel fortunate – I know what I’m dealing with while lots of sick people are still languishing in the dark. What hurts me now is the amount of time it is taking to reclaim my life – not because I feel entitled to reclaim it but because I have very strong desires, dreams, goals, aspirations that I harbour. They’re part of who I am and I carry that with me and every day I can’t bring myself to move towards them, I feel a sense of intense grief. I also hurt for lost opportunities and for the pain and loss my illness has wrought on my loved ones.
I know people have struggled throughout history, through wars, poverty, illness – things no-one wants to experience but a majority of our global population do. So I see myself now as cut off from my own life trajectory and somehow I’ve been co-opted into a bigger cause and a really difficult one because it involves being severely ill with the complication of no recognition from those that could help and no certainty of a cure. But I’m dedicated to it now. My recent intensifying symptoms scare me but they also force me to confront my views of my own life because for every loss I realise how much I had, how much I have and how much can be taken away with astonishing suddenness. It forces me to be more bold, more candid here, more honest with myself and to try to live more in the moment.
I really want to come through the other side, to get my body strong again, to heal the grief and trauma of being abused by medical professionals and disbelieved by friends (not all, I have some amazing people in my life and I am very grateful for that) to rise higher and do something with my life other than just exist from day to day, take my scheduled medications, distract myself from the day’s physical issues and wait for better times. I’ve been waiting a long time now. I’d love to be able to make a fresh start. But until then, I turn to positive memories and surround myself as best I can with supportive people and environments. Until I can bust through this chrysalis and be free once again.