Dear Mr Springsteen

born-to-run-front-cover-only12 May 2016

Dear Mr Springsteen,

I have epilepsy, and I have spent the last month and a half recovering from a bout of seizures I suffered in the middle of March. I used to work in radio, had a reasonably happy life in a city I love, living independently and working towards becoming a freelance writer. I’d recently joined my first band (!) and was starting to engage with some of the challenges I’d been dreaming about since I was a kid.

Now I’m living at my parents’ house, in a regional area five hours from where I want to be, with a stutter that has killed any chance of continuing work in radio and significantly effected my employability across the board. Even the most basic of tasks can be incredibly tiring due to my motor skills going AWOL, and holding a conversation is a struggle most days. I’m an avid lover of live music – oh, I’m sure you’d love some of the artists coming out of Canberra at the moment – but I won’t be going to any gigs anytime soon because now loud or unexpected noises put me on edge, further limiting my speech and greatly heightening my anxiety levels, leading to an further increased risk of seizure. My doctors and neurologists have no idea why this is happening (except that it’s not a tumour, stroke or blood clot, which is a blessing) so there’s no treatment plan for me, except waiting to see if it comes good.

Cripes, that was a bit of a downer to start with. Sorry about that.

But it’s important that I break it all down, because I am in a pretty dark place right now. I have nothing to hold onto. The rewards I would normally give myself to try and feel better – a trip away from home, a night out with friends, seeing a band – are all out of reach. All the little goals I’m setting for myself? I’m missing them by a mile.

In the days after the first in my cluster of seizures, I bought your Born To Run album off iTunes at the suggestion of my aunt. (I prefer concrete copies, but I haven’t been able to get to a record store since this all hit the fan.)

Since then, your album has been what I cling to. I was never really one for much mischief, but the youthful abandon and longing to throw off the shackles of life and be free described in “Thunder Road” and “Born To Run”? I was working towards living that, taking advantage of my youth (I’m 26) and being myself and how the system can go to hell. I had felt trapped in my last job, and I’d just broken out of it, putting in my resignation two weeks before I fell ill. I was starting to feel the wind in my hair, and I was looking forward to seeing where the road would take me.

And then came the contrast. Certainly not as violent or criminal or broadly devastating as the actions and consequences of your characters, but just as desperate. Locked in, and clawing to get out, to no avail. That’s me now, stuck in a brain that feels like it is short-circuiting almost constantly. I am writing this letter in one of the few moments of clarity I have been blessed with.

Your album has reminded me of two things. The first is that I am very lucky. I don’t have to resort to cross-river deals or run from guns and cops, because I am a white, middle-class woman, living in my parents’ house in a country town in Australia. The second is that I was so close to beating this condition – I’d been seizure free almost two years before my relapse – that I should be able to do it again; I need to fire up the engines and get going. (Ironic, since my condition eliminates me from being able to drive.)

I’ve lost count of the number of times I’ve listened to Born To Run. It is the soundtrack to my days, my solace in the darkness, my motivator and my comfort. Though the story is different, the emotional ups and downs are calling me back to my own type of freedom. I listen to it every night as I go to sleep, willing it to imbibe me with its energy and the drive you used to make it happen, 40 years ago. (How was it that long ago? It still sounds fresh and vivid and alive.)

I’m yet to dive into your full back catalogue, although it does come highly recommended. I just don’t think I’m ready yet. If it’s alright with you, I’m just going to curl up with this album a little while longer, a little musical safety blanket to get me through the next few weeks, months, however long.

I honestly don’t know if I’m going to get through this, though. My speech was so precious to me, and now it’s barely there. I haven’t seen my friends in over a month, and the distance makes me ache. But even if I don’t, if I’m stuck in this shitty existence until I’m dead, I wanted to thank you for the little bit of peace you’ve brought to my soul and the little bit of fire you put in my belly. Born To Run is what my motor is running on right now, and I have needed every note of it.

Thank you. Thank you so much, for forever and a day.

Sincerely yours,

Noni Kuhner

*****

I initially didn’t want to post this here. I wanted to send it off into the world and never hear from it again. I wanted to send it to some vague record label address in the hope that it might one day get to the eyes I wrote it for. If it never did, that didn’t matter. It was the act of writing it, and of sending it that held meaning. It was an act of healing, where the process was more far more important than the result.

Two months later, I’m in a much better space than I was when I wrote this. I’m back in Canberra, starting to work again, and my speech has mostly recovered, though it does have the occasional hiccup. My brain still struggles a little when there’s too much sensory stimulation or I’m trying to think about more than one thing at a time, and I had another small seizure a few nights ago at band practice, but apart from that, I’m doing okay.

I’ve been taking some time off Born To Run over the last month or so, just to get back into the swing of listening to new things again. I’m loving Brendan Maclean’s funbang1, and some of the older gems in my collection from Inland Sea and Paul Dempsey. I made a mixed CD as a belated wedding present for a friend, and caught up on a whole bunch of podcasts. I finally got around to digging into some of Bruce Springsteen’s other works (Born In The USA is good, but inconsistent; Darkness on the Edge of Town is easily #2 on my list of favourite albums of his).

Right now, I’m listening to Born to Run again after a month or so’s break. I still love it. It still means so much to me. I still feel the need to say “Thank You” all over again.

It really is a great album.

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You’ve Got Mail, My Dear

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I have a lot of emails to read. I’ve committed to the idea that I’m going to read all of them. I’ll reply to those that require it, bookmark websites I’ve sent to myself, transfer the words in my drafts into documents and file them where I can find them later.

I’ve been stuck at my parents’ house in Dubbo for over a month now. My speech is still a mess, and loud noises still make me quite distressed. I’ve been spending all my time playing various iterations of The Sims because at least I can create a decent life in that universe. It’s my own quiet shame, but a remarkably effective coping mechanism, which is probably why I’ve used it every time I’ve been depressed and am trying to rebuild my life.

It doesn’t feel like depression this time, though. It’s frustration at the physical, not the emotional. I feel like I’m locked in my own head because my mouth can’t spit the words out. When I’m silent, it’s not because I have nothing to say, it’s that I literally can’t hold a conversation. I’m sitting at dinner with my family, desperately wanting to add something but knowing that the scratch of cutlery on crockery feels like it’s cracking my eardrums and now the moment has passed so even if I had been able to spit the words out, they’re too late to be counted. Contrary to what you might think, it hasn’t made me a better listener, just a bitterer one.

I spend most of my day in bed. When I try to do something on my laptop, I immediately lose all my focus and find myself on Facebook or Twitter or something else, searching for an indication that it’s going to be okay, but only finding myself in a puddle of muck full of envy and self-loathing that I can’t do any of the things that I love anymore. Gigs, plays, parties, going to the pub or a café with friends: they’re all too much for my sensitive little head. I can barely get through a quiet day of nothing without a meltdown, so doing something that would actually excite my senses just isn’t going to happen.

Ingress_logo_512pxHere’s an email about Ingress. They’ve given me some kind of code to get me back into the game. I haven’t updated the app in months. Maybe I could do that? Let’s see how I feel tomorrow. If I get up before noon and have a good start to the day, maybe I could go for a walk? Heck, maybe I could even go unaccompanied. Probably not. I’ll set a reminder to ask Justine or Dad to come with me, just in case.

Last weekend, my housemate came to visit. We sat on the back deck for at least an hour, my parents’ dog falling over herself at the arrival of a new human. We talked, or at least she did as I stumbled through stammered sentences, and it was the best little while I’ve had since I came back home. Afterwards, I was both invigorated and exhausted.

I’ve suspended my MEAA membership, so there’s an extra $50 or so back in the kitty each month, and I’ve whittled my way from forty emails to thirty. That’s a good start. Sure, most of them were weekly digests from Scum and HerCanberra and other blogs that I try to keep up with, and none of them were things I had to take action on, but it’s a start. Maybe, just maybe, I can do this.

I’m leaving so much undone, either because I can’t physically manage it (calling ActewAGL’s sub-contractor about our gas meter – it’s hard to be authoritative when you can barely get words out) or because I’m terrified of it and what it represents (emailing or writing or chatting to people because I don’t want to confess to them directly just how vulnerable and scared I am; much better to shout it to them all at once in a blog).

That said, the stagnation is driving me mental. I want to be applying for jobs, heading into agencies and doing some freelance work, just like I was planning to before it all went to shit. I was ready to be active and pursue some goals. I’d got so far as setting the wheels in motion, signing up for websites that would give me leads and options, even getting the fire up to apply for an ABN. All of that is so far out of reach right now, and now all I feel when I think about it is anger, resentment and despair.

born-to-run-front-cover-onlyThe one thing keeping me going is music. I’ve found solace in Bruce Springsteen’s Born To Run, an album which has grown on me with every listen, taking me to a strange film-like place where disenfranchised youth are struggling under their individual yokes, yet still finding time to stick a middle finger up at the world by getting up to the kind of romanticised shenanigans I never dabbled in. I regret not engaging in mischief as a teenager, and not getting up to more at university. I felt like I was starting to hit my stride before this mess, another frustration that keeps me awake at night and makes me hide beneath the covers during the day. If I ever get back to the real world, I hereby commit to focusing on having more magnificent times, creating more memories to both entertain and torment me should I end up here again.

I’m down to twenty unread emails now, although some of them I’ve just re-marked so that I remember to bookmark them once I’ve finished reading everything else. All that are left are the notifications of new releases from Canberran musicians that I need to at least sit down and properly listen to, at best use a little more of my savings to nab a copy. The digital variety is most likely; apparently nobody makes CDs anymore.

This is how life is today. My music and my correspondence is ethereal, floating through networks and wires in streams, downloads and inboxes, when all I want is to hold them in my hand. The only thing that seems physical right now is my anguish and illness, both things I would gladly change from concrete to conceptual.