Lovely sleeplessness - part two of Losing A Friend

It's 11:47 and it's been bucketing down for a good hour, that lovely blankety feeling mixed with the slightly buzzy awakeness of the 19th hour of being awake. The peak after the dip.

It's delicious, this quiet house feeling. This is the time when things get done that can't possibly happen when there's washing to be done, dishes to put away, mail to sort, chickens to feed, fire to stoke, kitty litter to change (finally). This time - slightly mad, a bit itchy and everything feeling so sneaky - is when the best things happen.

I quietly fire up iTunes and at last I can hear this tune that's been swinging around in my head for days. Gently as she goes, my favourite parts are 'shiny shiny sky' and the oohoohoohs after ..'there's a window there'. I listen to music all the live long day, but moments to pass time enjoying something just for fun and to satisfy a want often fall short of getting everything done. This banjo! It seems to match my calmed heartbeat. Gorgeous. I've been waiting for yonks to have some time with those oohoohoohs.

So I've been meaning to write an update to this post. Yesterday it was two months (not exactly to the day) since Rel passed away, and I wanted to check in. How are you doing? Leave a comment, I'd really like to know.

I say two months because it was a Tuesday when I found out. I had just got my hair cut, I'd had acupuncture earlier that day, and I'd stayed in town on Monday night on a friends couch so I could do my city slicker appointments. I had talked with Sam my hairdresser about Rel because we both knew her. I told her she wasn't very well, worse than she had been before. We were worried. Then I got the call about twenty minutes later.

I will always be grateful to Dans for calling to tell me. There's some pretty hardcore bonding that goes on when that kind of information passes on from one person to another. It takes moments but you remember it for the rest of your life. A piece of your world smashes to smithereens and you know it. It was a difficult drive home down the Monash, I didn't know what to do (but I was driving so what was there to do but arrive at my destination?) It felt like such a lonesome journey knowing that Rel wasn't going to be around anymore.

Yesterday I had slept on the floor of my friend Adam Quayle's loungeroom, took myself out for breakfast and went to acupuncture, did a quick pop in at Heide to get something from the gift shop there and then went for my haircut. We talked about Rel, and babies, and life out of town, and trashy tv shows. I'm doing ok, I realised. I'm past the worst hideous parts.

I had hit the deck with a pretty bad flu about a month ago with nothing to do but lie there and feel miserable. Fever and an extremely runny nose and a lot of whining to my partner. Such discomfort for about a week. Lots of tv and sweaty sleep, soup and delirium and salty potato chips. I craved plastic tasteless frozen pizza, so Tracey went out and fetched some for me. It was such a crucial part of the grieving process for me, (the flu, not the pizza). I had to grind to a halt and sweat it out. I bounced back to functioning after the usual time and rest, changed ever so slightly from before the flu.

Now I'm at a point where I think of Rel constantly, but it's different. Every day I miss her, but there's no longer a confusion about when I'll be seeing her. No more tiny nanoseconds of crushing realisation. These days it stops me in my tracks more to try and imagine how her closest people are traveling along, my heart breaks for them and my eyes well and I wonder how on this everloving earth they are. No, that's not it. I wonder and I can send a message or make a phone call and find out. It's not that, it's more hoping they're ok. Hoping and wishing that this day will be kind to them. With such great love comes a ripping void at the end of a life, when we are apart. I wish with all that I am that this moment and this day and this week will be ok for Rel's people. I wish for bursts of happiness and light and laughter (but is that too much to ask?) if not now, then some day.

Yesterday after my haircut, instead of driving home and remembering feeling so horribly lost and alone I popped in on Dans, Rel's bestie. She kindly offered me Rel's mug to sip tea from and we had a lovely chat and walked her dog Bundy. Our visit had all the best elements - chats and dogs and records and tea and a walk and some autumnal foliage and honesty and connection. It did me good. Both of us, really.

I read a quote from David Steindl-Rast that Pip put on Facebook the other day "The root of joy is gratefulness" and it rang out like a bell. I am so grateful for cups of tea with my new friend, met through our old friend. It means so much.

Now as I sit here in the stillness listening to Sweet Jean on a low volume appropriate for 12.38 am, I remember that two weeks before she passed away Rel sms'ed me while I was on air and had played one of their tracks, asking about who they were. She looked them up but found nothing to buy yet on iTunes. Their album comes out over the next month or two, and I bet she would have loved it.

Cutting It Short

Spent the day yesterday at the Emerging Writers Festival and attended an excellent session on short stories. One of the panelists said that there has never been a better time to reinvent the format and write in whatever style you see fit.

If you're like me you constantly have ten million ideas rolling around like marbles in your head, and dismiss so many because they're not tom bowlers. (Are they Skittles? Empty calories and ingredients that read as numbers. Showbags - full of shit.)





My attention span is short and slow to catch on sometimes. I wonder if I could write from that place. What would happen? Would it be terrible? Who cares, do it anyway. Romy posted a great blog on Haiku the other day - about the wonderful healing aspects of being present in a single moment and documenting it. Don't worry so much about the 5-7-5 structure, just let the words tumble their way out. Short and sweet.


Here are some chunks, from my mind to you.  

Every time I get in the car
I adjust the rear view mirror.
Often akimbo, what happens?
For the longest time I thought
Someone had rummaged through
My car and knocked it,
Or I had nudged it with my handbag
(always too full of things I don't really need)
But I realised finally
It's my spine that keeps changing.

*

I found myself in a room of some importance, dwarfed by dead white men - all ten feet tall and framed in gold. Pointing at books, holding scrolls, none smiling - some in velvet pantaloons. I was all alone and loving it, in a room full of people. The words washed over me and I didn't understand many of them, truth be told. I haven't had the academic experiences of so many and sometimes that leaves me yearning for better mental health in my late teens, a greater capacity to push through and sit in that discomfort, even the freedom of not giving a damn about the others. But that hasn't been the way of things. I sit in a row of people, near the back. I smell halitosis and body odour all around and know that we're all trying our best. Some are concerned about what They think of us. Our time will come - every one of us. I know this to be true because my time has come in everything I really tried my hardest in, and I grew from that small fish to the frog standing on the rock and singing about it. It's so easy to forget those triumphs when you're an amoeba, starting all over again.

*

I crossed Gertrude Street fresh out of a cab, new hair product (salty sea curls), eBay frock and a day of fun ahead and I felt so shit hot that I assumed the person washing the window was waving at me until I saw the sponge.

*

The paralyzing fear of starting: a knot in my gut and a thorn in my side. It took me three months to apply. One day to get accepted. Three weeks to reply to that acceptance with pitches. Four hours to receive a positive email with a go head and request for more info. I'm sitting here, not replying. Not writing it. Thinking about it, marinading, being annoyed at myself, doing brainless admin, social media, chewing my nails, wiggling my toes. Write it, damn you.

*

I came home to her and found after all that, we were both fantasising about the same things. The freedom that being single brings (but not being apart). We'll rearrange our furniture, I'll spend some days in town, she'll have some time alone at home. This is a better us.

A Pain in the Ass - International Fibromyalgia Awareness Day

Today is Mother's Day in Australia, as well as Fibroymyalgia Awareness Day all over the world.

I thought I'd write a post about it because it's one of the categories I find myself in. I'd like more people to have an understanding of fibro. I wouldn't say it's a primary focus, but it tries to be. It edges in to every area of living in one way or another. This isn't always a bad thing but it ain't a walk in the park either.

If you'd like a snapshot definition, there's a pretty good one here.

There isn't a lot of press about fibro, but here are some of the things that spring to mind:

- spoon theory
- purple logos involving flowers and fonts that I must say I don't find aesthetically pleasing
- yuppie flu
- mind/body grey area
- affinity and connection with other conditions and illnesses like chronic fatigue syndrome, lupus, crohn's disease, glandular fever, etc.
- pop culture references: House MD (a person came in complaining of fibro, House gives him tic tacs and tells him it's medicine and he comes back a week later "cured"), The Gilmore Girls (The senior Gilmore's talk about attending a fundraiser for Fibromyalgia and decide that it's "a very dull disease")

The other day I went on a first friend date with a gorgeous lady I met at the Big Hearted Business conference. Lily Mae Martin is a fine artist, writer and mum. We went out with her toddler, and aside from completely adoring each other, wee little lady and I seemed to have a fair bit in common. As we drove to our destination (Heide Gallery for a spot of lunch and artsy appreciation) she wanted to know if we were far away, what would be happening, she was very excited and happy. As we sat down to have lunch (banana milkshake and crepes for toddler, beautiful seasonal salad for Lily and wagyu pie for me) our tiny friend became tired. Her whole face changed in an instant. Oh, I know that feeling! All of a sudden, your whole energy levels just drop. Bang.

Being a 32 year old woman, it isn't really appropriate for me to crack it and cry, but gee whiz that's what I feel like doing sometimes. It's like every ounce of air leaves the energy balloon and you revert to that primal way of getting by before you really learn about the needs of others. Flailing madly, and hoping to make it through.

I absolutely loved spending that time with Lily and her beautiful child, it felt the way it always feels to witness honesty and realness. Toddler gets tired, gets a bit grumpy, mama distracts and loves and supports and negotiates, toddler feels better and relaxes a bit. Toddler reverts to sweetie pie. SO CUTE. (I'm not sure if I'm being clear enough about the levels of cluckiness I'm experiencing at the moment, care for a tonne of bricks?)

The whole day was cute, and I don't believe that the tired behaviour was bad in any way - that wonderful girl was communicating her needs in the best way she knows, and her mama was teaching her all about love every moment of that day by loving her solidly and consistently through the ups and downs, the divine and the difficult.

So how do we love ourselves consistently as adults, when in our core we have the rapidly changing constitution of a tired toddler?

It's not easy, but it is possible.


There's a memory that often pops into my head from nine years ago. I'm 23 and the fittest I've ever been in my life. A psychic had told me I was going to meet someone soon (for holding hands etc), so I wanted to look hot and started walking in the mornings. Lifelong chub melted off me and I was fit and energised, fulfilled in my study and work, and I was at a gig at the Corner Hotel in Richmond with friends. I think it was Spiderbait, or the Lucksmiths, or someone bouncy. I remember that I'd been standing for hours after a full day and I didn't feel tired. I was so happy, and had the awareness to pause in the moment and feel grateful.

It wasn't long after that, that I met the person for holding hands etc. (it turned out to be a woman), worked myself into the ground, the relationship didn't work out in all the worst ways, I had a massive blow-up with my entire friendship group and ended up moving on because I knew I deserved more, I moved into a random Fitzroy sharehouse and after a few weeks the guy in the next room shockingly had a heroin overdose, I had an extremely bad flu, I moved out of the sharehouse and in with my brother, he fell off a roof whilst working and was badly injured (he was very lucky to survive), I injured my shoulder through overuse and got put on anti-inflammatories, I got a haitus hernia and was in agony during the final months of my course, I took on more work anyway, I got injured in a workplace incident and that's when it all stopped.

Quite a list isn't it!  Drama drama drama. Physical, mental, social, work and family drama. I stayed upbeat and positive, somehow. I'm starting to understand now that things may have been different if I could let myself be shitty and angry about all these things that happened. The anger is in my bones now because I wouldn't let myself really feel it.

My body could not cope with all these things, and put a stop to me getting into anything else that would wear me out or upset me. I couldn't get up out of bed. I couldn't move. My arms did not work. It hurt to brush my hair, so I didn't. I went through workcover which was a total head-fuck nightmare and to this day I don't remember much of the next eighteen months or so. I stayed in a bad relationship because I was terrified to do it all on my own.

I finally got a diagnosis when I went to see a sports physio recommended to me by a friend who was good at helping out with weird shit that wouldn't go away. He did a tender point test and told me it was Fibromyalgia after I retched and doubled over with pain, breathless and clammy. I saw a rheumatologist who told me it was Fibromyalgia. He was so kind and gentle. He recommended meditating to help with stillness and acceptance. I read a book and finally understood.

To have a name for something, even if it can't really be fixed, is like being handed a golden ticket to the chocolate factory. It's real. I'm not crazy. I'm not a faker. The guilt and shame of my body going wrong still lingers, but it's mixed in with a healthy dose of reality these days.

My dad got really sad. He couldn't deal with reading the book about it. He dealt with it as best he could, urging me constantly to keep turning stones over and trying new things to get better. Years of turning stones over taught me that those stones and the frantic hope they bring up are more exhausting than any illness could be. These days it's massage, tiger balm, acupuncture, hydrotherapy, osteo and finding my joy as best I can. I do all these things regularly and it may look like a long list but it's a tiny fraction of what I used to squeeze in to each week.

There are a lot of snake oil merchants, miracle treatments, diets, workshops, programs and rehabs. They are all expensive, have caused me a lot of pain and disappointment, and a lot of setbacks. The worst of all though is the bitter sick people. I am so freaking terrified of them - being lumped with them, becoming one of them without realising. I prefer to hide myself away than risk being that person.

Recently I've been trying out being a bit more real, being more honest about why I can't always make it to things people are kind enough to invite me to. Being less ashamed and guilty. It's a delicate balance and challenging to convey to someone you adore that you can't come to their gig because it's not possible for you to be up that late/stand that long/be overstimulated without days of painful consequences - without sounding like a whinger!

Sometimes I'm met with odd reactions like a fast change of topic. I guess it's hard to hear and know these things about someone. I water it down as best I can. If I'm telling you I can't come because of migraines/exhaustion I truly don't need sympathy or for you to do anything for me, I just want you to know that I care about you and would much rather be at your shindig than resting. Resting sucks. I know to some it would be heaven on a stick to have enforced rest, but even when I'm resting it's not restful. My body is screaming at me. My mind is racing with unaccomplished tasks. There's always catching up that needs to happen and never enough fuel in the tank to get it done. I'm worried about taking too many painkillers (I barely take any, they're all over the counter, but still I worry that it's too much). If I don't manage my pain I don't sleep properly. If I don't sleep properly I'm 100% worse than if I did.

I had a brilliant chat in the middle of the night with Larissa Tandy from Iamloveproof and The Strine Singers the other day. You should check out their music because it's freaking beautiful. She'd texted me about a gig she had last night, and I had received a message from her about something else and saw she was online and thought I'd try out that being honest thing.

Larissa:
Tell me about it man. You can find me livin' on chronic pain lane too. What a drainer.


Me: You're so good at rhymes! How the hell do you manage?

L:  I could write a book I reckon. If I had the attention span. 
But really, I've developed an acute ability to disengage (necessary but affects quality of relationships), and an intense focus on the things that bring me joy, like writing songs. You getting treated?

Me: Yeah I get that. You gots to find the joy or what's the point of the slog.

I'm treated all the time, it's just a reshuffling really. I've got fibromyalgia so it's a long haul thing. Annoying.

L: Fark jenny. That's intense.
I'm just wrapping my head around a potential "no cure, lifelong" situation. How the hell? You're right.. It's so annoying!

Me:  What's yours from? I have memories of a hip thing and some surgery. You're freaking amazing to be able to do what you're doing.

L: I have a list. Deformed pelvis. Old injuries that my body won't accept as surgically repaired. And the knock on effect of permanent damage to knees, back, ribs and shoulders. I'm in a weird chicken and egg situation that no one seems able to understand or resolve. It's gettin to the point where I can't play guitar a lot. Upside.. My creative output is only increasing with my need to be distracted.

Me: Holy shit, pelvises are a motherfucker.

Crunchy high five to you sister, go creative output go.

L: Fkyeah! Crunch on! It sucks you're suffering. But thanks for sharing. It's a difficult experience to describe or explain.

 

Me: You too. Chat to me anytime, it's nice to know not so alone in the crunchy old lady action whilst rocking out and being youth.

L: Ha! Gold

I loved what Larissa said about an intense focus on the things that bring joy. It was a bit of an Oprah lightbulb moment to be honest. After the day out at the gallery I was overtired and sore, and didn't sleep til 3 am, then woke at 8. Pain disaster, but totally worth it. Kept going and had another great day. Took it pretty easy yesterday and will again today, so I can launch into this week where I have full on funtimes happening. Radio and teaching, a birthday dinner for a friend in town, a flower arranging class, an exhibition opening in Lilydale, then a friend coming for a sleepover on Friday. Bliss. I'll snatch in bits and piece of rest where I can.

When I let it all grind to a halt, slow enough and still enough for long enough, I get depressed. Way down in the black hole depressed. If I push myself too much I'm in a forced stop, but that feels a bit better than taking on too little. Make sense? It's a constant balancing act. A tightrope walk. Every decision has big consequences. I choose giving it a go and getting amongst it when I can. I completely disengage from my physical body regularly. While that isn't healthy, it's a nice break and a necessary one.

I saw a post on a fibro group on facebook a few weeks ago that a young woman wrote. She said she would rather have cancer than fibro, because when people have cancer everyone rallies around you, brings casseroles, sends positive vibes and checks in and cares about you. Cancer will either kill you or you'll recover. With fibro, nobody seems to understand or care, and it's unlikely to kill you so you know you're going to suffer on and off for the rest of your life. I found it very upsetting and triggering to read that, but also intriguing and kind of brave. When Rel died from cancer in March I realised that was the conversation I never got to have with her. Then I realised I didn't need to have it, because being alive is such a blessing anyway.

I don't connect with the word "suffer" because there is so much more to it than that. Fibro may have caused me to be completely brainfogged all the time, but because of that I'm extremely organised and never let other people down when I've committed to work. I have amazing systems in place to make sure I know where to find things when I have no idea where I put them. My work ethic is through the roof. Perhaps it would be better if I admitted to myself that I do suffer, but it just feels jarring to even type that word. I know that when Rel died she was at peace because her pain was no longer with her, and sometimes I think of that night at the Corner hotel when I was dancing and full of energy and long for those days.. but the days I have now are engineered to be the best and happiest they can be. I'm so thankful for days out with sweet toddlers, midnight conversations about tricky subjects, understanding and love.


In conclusion, kiss your mama today and if you have any pals with fibro - blow em a kiss too!

Whelmed

Whelmed

Last night I was trying to get to sleep and I was listening to a podcast made by the lovely Pip Lincolne of Meet Me at Mikes and JustB fame. I'd had it open in a browser on my iPhone for a few weeks to get to when I found the time and brain space to listen properly. That time came and as I listened to her lovely voice and did nothing else except breathe, I felt a great stillness.

Then I realised the absence of that stillness is pretty much always with me. I'm always so very, very busy in my head. Busy and not achieving much because I'm worn out by all the spinning around of ideas, wants, worries and wonderings that are constantly happening without anything... happening.

Do you know that feeling? I call it the Borders 1999 Feeling. Allow me to explain. In 1999 I moved out of home for the first time, lived at uni and would go on trains and trams and drive myself places without checking in with mum and dad or needing lifts, for the first time. I wasn't far from other people, they were all around me and I gravitated to bookstores and record stores and cinemas and wound up one day at Borders on Chapel Street with a notebook I always carried with me. I started listening to things at the listening station and made myself a little list. That list just kept going, pages and pages filling and spilling with books and albums and I had to sit on the floor because it was all just too much! How would I ever grasp all these things in my hands that I wanted so badly, to fill and expand my mind and line my shelves and surround me wherever I was living?

Good grief. It's lucky we live a long time and have many years of gathering these items and artworks for our nests. I didn't know that then, not really. I was 18 years old and needed it all right now because what if it's too late and it all flies away?

These days I'm kind of in the same boat if I'm honest with myself. It's books and records. Blogs and craft projects. Travel, recipes, renovations, gigs, people I want to see, documentaries I'd love to make, podcasts (make and listen to), things I'd like to grow in my garden, walks, shoes, skills, languages, etc etc etc.

I saw this link of great blogs of 2013 and nearly cried. I want all of that! To read it all! What if I miss out! FOMO!!!!!!

Today I'm recovering from the flu so there isn't a lot going on. I'm listening to Aural Text on Triple R, we've just had a wood delivery that needs to be stacked, it's the first day out of bed/couch really so I'm a bit sweaty and tentative. I'd like to plant some seedlings in the garden, prepare Homebrew for Monday, go to the post office to pick up a parcel, tackle my emails, call my mum and on it goes.

My friend Dan Vo told me that to be successful in life you should make a list of three things to achieve in any given day, and not exceed those three things (it may have been five). Are you freaking kidding me Dan? Don't you know that there are approximately nine thousand things that I absolutely must get done today, or the sky could quite possibly fall in?


                                



He's right, you know. When I'm overwhelmed I get distracted by every fricken shiny thing in the world, when I'm underwhelmed I'm empty. My goal is just to be whelmed. Nicely in the middle - spirit level style.

Smiling Mind is a nice start, it's a great app for meditation. They're not too long or kooky, just help to slow the brains a bit. I'm a really crap meditator but I try every now and then.

So. Today my three things:

Stack the wood
Write this blog
Rest

Then tomorrow I can go on a friend date with Lily and her wee person and see some art and have some lunch.


How are you? Are you whelmed?