Finding Family

That particular time, I was admitted to hospital through the emergency room. I’d been battling a pseudo-obstruction, which is when my digestive system behaves like there is blockage, but there is none. Basically all the nerve messages that are supposed to make me poo, stop working. And the result is a painfully distended belly; a cocktail of treatments and medications. I have to go into hospital if the distention lasts more than four days. It’s all part of Dysautonomia, the diagnosis that seems to define so much of my life.

Apart from being painful and distressing, a pseudo-obstruction is mildly embarrassing. Firstly because I’m in for poo related reasons, so there’s a lot of discussion about bowels with the nurses and doctors, all within earshot of my ward-mates. Secondly, because I look like I missed my due date for delivering a hefty baby.  My belly gets so huge. So if I walk, I waddle. I rub that tummy a lot, because it is sore. And of course, people passing think it is cute to see a waddling pregnant lady pacing the hospital corridors.  I get lots of comments like ‘Not long now, love!’ and ‘hang in there!’.  If only they knew that the delivery I was so desperate for was poop baby!  I’m sure they wouldn’t find it so cute then.  Perhaps they’d run for cover!

This particular admission, the hospital was really short on beds. So because of a new policy, made in some administrator’s office, somewhere far from the ward, I was put in a room with three male patients. At first, I was too distressed to really notice.  I waddled my way off my bed as soon as possible and began to pace.  Locomotion is supposed to help, so I was getting mobile. Every time I passed by my neighbour’s bed, the old guy would make a low whistle, and wink.  I observed that he did this when any female was in the near vicinity, but somehow, that whistle just for me, made me feel the opposite of my big bellied waddle. I felt like someone could see the girl behind my diagnosis, the real me. It made me feel special.

That first night, lying in beds a few metres apart, a curtain between, we both tossed and turned.  I could tell he was in pain too, but I didn’t know why.  Then, around 4am, he whispered
“-are you awake?”
“Yes” I whispered back, “can I get you some help?”
“No,” he murmured “I just can’t sleep.  Want to talk?”.
So Tony and I talked until the nurses came to do change-over.  He had just had a tumour removed from his groin. He was worried. He was 68, his family were a long way away in Italy, and he was afraid of the future. I was half his age, supported by a loving family and dealing with a neurological condition that affected my autonomic nervous system.  He told me I was lucky. Lying there in pain as my abdomen continued to distend, I found it hard to agree.  But I said I did. It’s all relative, right?
I knew I was pleased that I didn’t have his problems to deal with. He sounded so sad and alone.

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In total, I spent a week in that room of men. There was snoring, wind passing, belching and cheerful enquiries as to whether my bowels had moved every time I returned from the bathroom. It had its ups and it’s downs, sharing a room with all those guys. And every night around 4am; chats with my friend Tony.  We talked about life.  We talked about being sick.  We talked about the things we loved and the lives we’d left outside the hospital, histories, regrets, the highlight reel. We became friends.

The next time he was in hospital was a few months later. He called me and asked me if I could come visit him there. He sounded fragile. I made my way up to the neurology ward. I arrived and within minutes his neurosurgeon walked into the room. He wanted to talk to Tony.
“Oh, good,” the surgeon said to me, “we’ve been waiting for you to get here”, I raised my eyebrows to Tony, ‘what for?’ I asked him with my eyes.
“Ah… you’re my support person” he said, looking down at his hands. I was shocked. I’d only met him in hospital recently… did he really not have anyone else in his life who knew him better than me?  Who cared for him more than I did? For the next ten minutes I held Tony’s hand and listened with horror as his neurosurgeon spelt out the awful truth.  They had not managed to remove the additional tumour they’d found in his head.  He had weeks, not months.  It was unlikely he’d manage an overseas trip to see his distant relatives. He should get his affairs in order.  The young neurosurgeon looked at me.  Nodded.  Held my gaze for a little longer than was comfortable, and asked Tony if he had any questions. When Tony had asked all he needed to, the surgeon turned toward me, saying to Tony, “…and your daughter?”.  I was floored. “I’m not-“ I began to say, but then I just shook my head.  “No questions”.

In the weeks that followed, Tony and I stayed in close contact. I visited him in the hospice as his time drew closer. It became clear to me that he truly had no real friends. He cried a lot. Cried that he wouldn’t be able to see his elderly mother one more time. Cried that his wealthy brother was too busy to fly over and see him. Cried with regrets for all the things in his life that hadn’t worked out. He asked me to write his life story, and so I did, sentence by painful sentence, as he rasped or slurred his words. The tumour was beginning to take his ease of speech; his fragmented final memories were pieced together by this random girl he’d met in the hospital.  I emailed it all to his brother, but got no reply.

The last time I saw him, I kissed him on the forehead as I said goodbye.
“Sleep well” I said.
“…wish you really had been my daughter”  he murmured back. I think I saw his good eye wink. I’m sure I heard a low whistle follow me out the door.  I smiled then.  And that night, he passed away.

I am lucky. He was right. Lucky our illnesses brought us together in the strangest of ways.  Lucky I had the chance to meet someone who made me feel like a girl who still had something to give, not just a sick person.  And lucky that I got to spend time with another human being through the darkest most dignified days of his waning life. I will never forget the things I learned from Tony.

Life is short. Luck is relative. And family can be found in the strangest of places.

Standing, still. Moving forward.

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The lights cast a soft whiteness across the photographic back drop. The studio is quietly humming. The equipment pops and flashes for each shot. Nods and short sentences between the photographer and stylist. I’m standing there, in my tenth outfit of the morning, swishing one way and another, a small dip of the head, a smile at some imaginary friends, a little on-the-spot walking action… it’s a sequence of movements like a slow motion dance. I am handed a bag, someone teases a rogue section of my hair.  Someone else adjusts my sleeve so the wrinkles will fall ‘just so’. I am modelling.

I smile at the lens, my mind racing along with the shoot, keeping up but in a parallel reality. I’m stunned by the surrealism of it all. I find it hard to compute that I am here, doing this. I’m not sure how long it will take me to adjust to feeling this way. Only 6 months ago I was struggling to manage daily life. Standing was my nemesis. Yet I have been on my feet for two hours straight… and I can still smile. Flash!  Pop! I feel my calves flex to keep my balance in my size-too-small prop shoes. I’m really doing this. Still standing.

“That’s it, we’ve got it!” smiles the photographer. The stylist and makeup artist give each other a high five. We. Are. Done.  Everyone thanks everyone. I change back into my own clothes. And just like that I clock off from another shoot as a curvy model. It’s such a fun and affirming thing to do. I feel like the luckiest girl in the world. I’m being paid to try on clothes and show people how they really look on a curvy body. I’m contributing to the kind of online shopping environment that works for curvy girls. I can’t count the number of times I have not purchased online, because the model looked too small for me to really understand how the clothes would fall. It makes me happy to think that there are DD-cup+, curvy girls out there who will purchase clothes this season because my boobs and bum provided some realism to help them with their shopping choices!  Here’s to the bootylicious bods out there, and some fair representation!
Here’s a grainy phone picture of me all glammed up, on my way home from yesterday’s shoot:

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But besides the representation of plus-sized bodies, the glamour and the fun of doing a shoot, there is always something running along underneath, for me. An incredulity. An awareness that just standing is still a dream for so many of you, just as it was for me, not so long ago. I remember how that felt, longing for a body that could do the normal stuff; every present moment is echoed with the contrast. I carry my past with me, I carry a knowledge that I can never forget.

And it is precisely because of all those years that I am seizing the day! I am doing what I can, because I CAN! But I have not forgotten you, out there. I stand for you as much as I stand for me. With every health win, every symptom I walk away from, with every medication I wean off, I am laughing in the face of Dysautonomia. Take that!  See this? Wham. In your face mother plucker! I so hope that if you have been following my journey, you feel me carrying you into everything that you cannot do. Into all of my upright hours, through all of my busy days. You are with me, in spirit if not in body. Your own body biding it’s time, battling it’s own way through the maze. Hanging in there.

I stand for you.

I stand for a world that is kinder to people like us.
I stand until you can.  I will stand as long as I can.
Hang in there my friends.  Hold tight. Never, ever let go of whatever it is pulling you onward.  Because if this can happen for me, then that means, it is possible.  If I have this reprieve, this time of plenty, this freedom to be who I always used to be, then why not you, too?

It’s a paradox, but nonetheless, here I am standing still and moving forward.
Kia Kaha.

*the necklace in the image above is from Uberkate. She ran a competition last year for women to nominate their friends/sisters/mothers using one word for the pendant.  My friend Nettie nominated me and chose the word ‘standing’. My sister in law Cathie seconded the nomination.  And they won it for me! It is a necklace I treasure.  I wear it every day and it draws me back to my purpose every single time I look at it. Thanks Nettie, thanks Cathie, and thanks Uberkate!
** Nettie has a blog called I Give You the Verbs. Which tickles me, because in winning that necklace for me, she literally gave me the verb! 😉

Julia: ‘P’s Get Degrees

 

It’s Meet My Peeps time again!
When I was at University, back in the Nineties, we used to say “Cs get degrees”.  It was our way of reassuring ourselves that we didn’t have to ace everything to get the piece of paper we were working towards.  It is a useful sentiment for socially distracted students, but quite a necessary mindset if you are ill.   Julia lives in Melbourne.  Her tenacious efforts mean that she is getting really close to finishing her degree; not long now!  This is such a huge achievement because she has done it all juggling study with the daily challenges of Postural Orthostatic Tachycardia Syndrome.
These days, in Australia, the old fashioned C grade has been replaced with a more politically palatable ‘P’ for ‘pass’.  Hence, ‘P’s Get Degrees.  🙂 Today she is sharing with us her story and her top tips for chronically ill High School and University students.  Take it away Julia:

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With chronic illness come many sacrifices. Many people have to give up the world of study, just like others would have to give up full time work. I am one of the lucky few who, although my methods may not be conventional, has been able to continue studying while sick.

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It all began back in year nine with the onset of chronic and complex migraines. They started as a horrible one-sided headache once every few weeks and eventually became more and more frequent and complex. By the time I entered year 11 I was experiencing episodes of dizziness and paralysis with these weekly migraines. With my final year of school approaching I remembered thinking, ‘well, it can’t get any worse than this.’ Boy, was I wrong!

It was year 12 retreat, a 3 day trip to Toolangi with half the year level. I had been feeling a bit rubbish over the holidays leading up to the school year, but had put it down to jet lag after coming back from an overseas trip. It was the afternoon session and 36 degrees Celsius. There were no fans, no air con. All of a sudden, my head was in my friend’s lap. I have no memory of how it got there, only the clamminess, mild nausea, head feeling like my brain had been replaced with helium and that familiar feeling of a migraine creeping in.

Of course, being in the middle of nowhere, calling home and getting picked up because of a migraine was not an option, so instead I was directed to have a lie down in the teacher’s cabin. I remember taking my medication and being knocked out pretty soon after. I woke to a student teacher staring at me. This was not the end of my ‘adventures’ on retreat. The next day was just as hot and I passed out again. I was given permission to go and sit in another room with a few of my friends while they waited for my mum to drive up and pick me up. After passing out again while sitting on the ground and struggling to get back up, an ambulance was called.

This was the clearest beginning on my POTS (Postural Orthostatic Tachycardia Syndrome), despite hints of it following through my life.

As you can imagine, fainting multiple times a day and feeling so unbelievably fatigued and dizzy doesn’t go to well with your final year of high school. My official attendance for that year ended up being about 50%, not to mention the classes I ended up leaving early.

My determination to finish high school was enough to keep me going. I was not going to spend another year there! I learnt early on, that teachers were always willing to help as long as you showed them you were willing to learn. Every class I missed or left early was followed up by a simple ‘copy and paste’ email asking for the stuff that I missed. Luckily mild insomnia came in handy allowing me the hours to remain mostly up to date. Most of my studying was done in bed with my laptop on my belly.

As term 3 crept up, I realised POTS was here to stay, and the difficult decision was made to drop one of my favourite (but worst) subjects, French. The head of VCE (Victorian Certificate of Education = High School Diploma equivalent) subjects was keen for me to keep the subject because of the mark up in score that came with it. The reality though was my concentration was completely shot so, concentrating in another language was never going to happen that would mean I wouldn’t even get a mark that would warrant any sort of a mark up.

It was a difficult decision, but I don’t regret it at all. My French teacher was amazing though, she understood my love for the subject and the limitations that came with being so unwell and went on to invite me back for the fun lessons like watching the Lion King in French. I never properly thanked her for everything she did for me.

Once I finally got through year 12 there was always the fear I wouldn’t get a mark that would get me into what I wanted. Luckily though, when university offers came out I got my second preference, which was a Bachelor of Science (my first preference being a Bachelor of Biomedicine). At the time I did not realise that this was a blessing in disguise. The biomedicine course was structured so much that it would actually have been quite difficult to do part time, as I have been able to do.

My first semester was a full 4-subject load and was indented by many trips to the hospital and constant rescheduling of assessments. It was from that that I learnt a full load was not for me. I began doing 2 or 3 subjects at a time, and in my worst semesters even just doing one subject.

I’m a perfectionist and wanted to get the best marks and subsequently, best average. I worked as hard as I could and quickly learnt that this was not going to happen with attendance just as bad as high school. I adapted my study skills and would only going to non-recorded classes and the ones that were recorded would be done in the comfort of my college room.

Living on campus was an absolute blessing! This allowed me to have some sort of a social life as well as maintain my study life. Friends that I met at my college have always been super understanding and I can never thank them enough for that. In fact, I would not be still studying if it wasn’t for all their support and help.

Of course, studying part time isn’t always ideal. There have been so many times where I’ve wanted to give up and just become a professional sleeper! The frustration of my situation really started to settle in when my friends started graduating. I felt like I was falling behind in life. The reality of a never seemingly ending degree would result in many tears, but eventually I’d get over it and just suck it up. Every semester I had to drop a subject would tear my heart apart, knowing that it was then going to be an extra semester, or even an extra year. 
I’m now in my final semester, and even though I am going through another rough period, that drive to finally get that piece of paper is keeping me going.

This is my advice to those of you who are studying with a chronic illness:

Don’t feel you need to finish with the people you started with, through my epically long degree I have met so many amazing people that I wouldn’t have met if I hadn’t taken so long.

Don’t be afraid to ask for help. The number of teachers, lecturers and tutors that have gone out of their way to help me has been ridiculous. I can never thank these people enough.

If you’re at university, don’t allow your own stereotypes and judgements stop you from seeking help from student services. Register, because the people are there to help you get through and do everything possible to make your time through uni as seamless as possible,

Pace yourself. This is probably my most hypocritical advice, because I fail at this one on a daily basis. Take your time, don’t be afraid to say no to things and don’t listen to people who call you ‘lazy’ or ‘not a morning person’ when you reveal how long you’ve slept in. Those sleep-ins may be the difference between quitting or getting through!

Just remember, you don’t need to get 100% on every test, P’s get degrees!

And to those who have been there for me and helped me at any point through school or university, thank you! Thank you for absolutely everything you have done for me, whether it be sharing notes, driving me places to save my ‘spoons’ from public transport, dropping work off at home, keeping me included in social activities and understanding the weird things I’ve had to do to get myself through.

-Julia

Meet My Peeps

Meet My Peeps

Hello!

In the last six years I have met some incredible people.  Connecting online with others who have chronic illness has been one of the greatest supports and encouragements of my journey.

For the whole of 2015 I will be deeply immersed in the Be.Leadership Programme.  And that means, a bit less time for blogging.  I have homework!  And readings! And deep thoughts to “thunk” (!)  I will still be here, doing what I do.  I just might not be doing it quite as frequently.  According to the calculator, I’ve been averaging four posts a week since I started blogging in May last year. That is a tough rate to match now that I am a bit busier.  But also, I feel like it’s a great opportunity to broaden the scope of the Chronic-ills of Rach.

I have called on ‘My People’ to see if anyone would like to share their story in this space.  I’m calling it the ‘Meet my Peeps Guest Series’.  And I am so chuffed that you will get to read the stories of some of the people so dear to my heart.  Each time I post from them, I will introduce them, tell you how we met and then you’ll hear their stories.  There is a diverse range of guests, some, like me, have a form of Dysautonomia, but we’ll be hearing from people with other chronic conditions too.  People with Invisible Illness, invisible disabilities and also people with conditions that are not invisible. They’ll be sharing with you their perspectives about getting through, getting on, and getting over the challenges they face. Welcome to the series, I can’t wait to see your responses to their heartfelt words.

Meet My Peeps

Big love to you from me, remember, I’m still here!  In between times, I’m just getting a little help from my friends. 🙂

Making Peace : Days Like These

I guess we all feel a bit awkward, thrust into a new group of people.  I think it is part of the human condition.  I went to so many schools when I was growing up that I did some crazy things trying to get people to notice me, to see who I was, beyond the be-spectacled, nerdy hand-raiser.  I was those things, but I was much more besides. I wanted them to get to know me faster, I wanted to find my kind of people and put myself out of my social purgatory misery.  Friends make the world go round.

I have a few dearly treasured friends these days.  People who are with me in person.  Supportive, wonderful women who are strong and wise and warm and funny.  Girls who ‘get me’.  I hope to have those friendships forever.

And then there are my online friends. I never thought I would have online friends. I didn’t know how to make friends online. But the people I have met through my support group for Dysautonomia and the people I have met through my blogging course, I now count among my best friends. I have been welcomed with open arms by people who ‘get me’. When a dear online friend died this year, it opened up a gaping wound of grief that has not closed.  It’s hard to understand how that is possible, but it is.  I’ve ‘met’ people who have changed my world from lonely to lovely. Warm fuzzy loveliness.  Connection instead of isolation.  These friendships are as real as those with people I can see and touch.

It is interesting to think that we have all met because of our struggles and shared pursuits. We reach out to each other from our solitude and we are no longer alone.  There is a deep resource of empathetic, beautiful souls out there; sharing experiences and caring for each other across the digital desert.  Beautiful people.  One day I would love to meet each one of them and wrap my arms around them in person.  Hello out there my friends.  You mean a lot to me.

I have a new group of friends, too.  A group that is just starting to build and grow.  People who read my words here.  I am so glad you are here. Everyone of us has difficulties we face and my hope is that no matter what yours are, you’ll find empathy here, with me.  I look forward to getting to know you, don’t be shy, make comments and I will respond, I promise.

Today I was listening to Janis Ian, one of the world’s most talented singer songwriters.  She wrote that song ‘At Seventeen’.  But she also sang this song.  I’d like to dedicate it today to my online friends.  Here’s to you out there, because even on ‘days like these’… you help me to make my peace.  I hope that I can help you make yours, too.

Trapped

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“I hope you don’t feel trapped”.  I say to my hubster, blowing the steam off my cup of tea.  It’s the quiet time of the evening.  We are alone in the living room, we’ve been talking about our days.  We’ve discussed future proofing the next new car purchase against the possibility of needing mobility wheels for me. We’ve talked some more about IVIG and our optimism about it, we’ve discussed side effects and risks.  We’ve mourned the end of our channelopathy hopes.  It’s not an uncommon intensity of night time conversation for us.

And then, I see him objectively, for a split second.  This lovely big guy, greying around the temples.  So tired.  So sad.

“That’s exactly how I feel,” he says.
I panic when I hear that.  I think I was hoping for him to say “of course not” or “-whatever!”.  But I can always rely on him to be direct.  It’s his talent to cut to the chase.  My heart hits the floor. In my head, our conversation escalates to custody proceedings in T minus two seconds.  He wants to leave but he can’t.  Oh no!  He’s with me out of obligation?  I should offer to leave him.  Give him his freedom.  No!  I love him!
He watches me spinning into divorce infinity inside my head and reaches out his hand.
“Rach.  It doesn’t mean I want to leave you.  It doesn’t mean I don’t love you.  Differentiate. You are not your illness.  I don’t feel trapped by you.  I feel trapped by what is happening to you; to us. And I am not going anywhere”.
I stare at him.
He is extraordinary.

Here’s to all the partners.  To all the people shouldering big burdens just because they love someone who is sick. Here’s to the parents, the caregivers, the kids and the circle of people who surround us.  We are not sick on our own.  We are sick and the consequences of our illnesses are shared with anyone who loves us.  We wish it wasn’t that way.
We wish you weren’t trapped too.

Here’s to the ones who love us.  The ones who aren’t going anywhere.
You are beautiful.

Thank you.

Cuppa?

1Most of you know that I did an online course about blogging in May/June.  I have been learning from the maestro herself, Pip Lincolne.  Have you seen her blog Meet Me at Mikes? I’ve still got so much more to learn and things to do to improve things around here, so I have signed up for the next intake as well.  I’m going to be like a Year 8 girl this time instead of a Year 7 newbie.

When I signed up for the course, I didn’t really look into it too closely.  It was an impulsive decision.  I’ve been writing parenting posts for Kylie over at Nic-Nac since the beginning of the year and I thought it might be good to find out what constituted proper ‘blog writing’ so I could see if I was doing it right.  I didn’t consider the possibility that I might make friends!  But that is exactly what has happened.  You’ve already met some of them if you saw my post here, called Chain Gang.  It’s like I’ve been milling around the quadrangle of this cyber secondary school, scratching my toe in the dirt, noticing the people I think are really cool and then… I’m in their gang!  These are my people, I have found the kids who like to hang out in the library at lunch time or discuss poetry under the shade of the trees.  Kids who want to run for school council or paint the sets for the school play. The sometimes-rebellious-but-never-suspected-because-we-look-too-much-like-nerds-crew. My kind of people.

We have formed a kind of community that will carry on long after the course has finished.  It’s a lovely place to be. A common room full of bright bean bags and big ideas, questions, learning and lots of support.  This week, our teacher, Pip, has invited us to join a ‘linky’ on her blog.  If you head on over there you’ll see links to all the blogs created or perfected during the May intake.  I’m there too, hanging out with the kids in the common room.  Come and have a cuppa with us.  Today we’re talking about five things we are loving right now.

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I am loving my red scarf.  It’s a deep, deep red.  Warm and super long, it covers my tummy when it is embarrassingly distended.

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I love my family.  We are many.  Last night there were eight around the table.  My immediate family is four, but we have two teenagers (from other mothers) who live with us too, my sister-in-law is staying, and last night, my daughter’s bestie was with us as well. She and her family are so much a part of our family that when we’re together we call ourselves by our hyphenated surnames.  Their close proximity to us in distance and heart gives us a true community, right here in urban Auckland.
It’s big and beautiful, my family.

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I love sunshine on my shoulders.  The winter sun is so much more appreciated by me than the summer scorch.  I love being right here on my bed while the sun inches it’s way across my feet and up, until it blankets me entirely in warmth.

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I love being around extraordinary women.  Recently I had tea with my sister in law and my Granny, two inspirational people who help me to be my best self.  Time with women is good for the soul.  So is a cuppa.  Put them together,  ahhhhhh, bliss.

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I love tea.  Warm, liquid love.  That’s what a cuppa is to me.  Comfort; me time, restorative repose.  A hiatus, a tiny, hand-held hug.  I love a good cuppa.  Thanks Pip Lincolne for inviting us all to have a cuppa tea with you.  Click here and see what Pip and the Pipsters are loving at the moment.

Might just go pop that kettle on for another…

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Chain Gang

Remember when chain letters were the thing?  You’d get one and quietly sigh at the knowledge you’d have seven years of bad luck…unless you hand copied them onto every sheet of that pink floral letter writing paper your Nanna gave you last birthday. And distribute them faithfully.  Oh the frustrations of pre-facebook ‘sharing’!

Sharing is so easy with facebook.  I love it.  But recently I have been discovering a world beyond my beloved facebook, in the ‘Blogosphere’.  When a fellow blogger, Annette, whom I seriously rate, asked me to be part of her ‘Blog Hop’, I said yes before I said,
“Wait, what?”
A Blog Hop, thankfully, is not a chain letter.  It’s a bit like a tag-pass-it-on kind of thingummy. A group of bloggers making a kind of a chain gang.  We all write about our writing process and then nominate three more writers to do the same.  It started back here, with Josefa. So here is my contribution to the wonderful Annette’s Blog Hop.
By the way, you should head over to I Give You the Verbs, she writes like a boss.

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I have been working on my brand new (baby)blog.  It’s four weeks old and a bit of a fractious baby!   For a start, like any newborn, it just won’t behave the way I expect it to; there are strange stray bits of fluff that can be found in all sorts of odd nooks and crannies.  And no instruction manual in sight. But yeesh, this new baby is loud. It’s been yelling itself red in the face since it’s birth.  And like any new Mum, I am exhausted and completely in love.  I even love it’s imperfections, cos I made it, and it was so overdue, I didn’t think it would ever get born.

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I write for relief.  I write to explain myself and my invisible illness, so people will understand both of us better. And I write for people like me, stuck with progressive health issues they can’t control, fighting for good healthcare, for treatment, for more time, better time, with their families.  I write so that my words can reach people who are beyond my arms reach; can provide them with an understanding voice, words to express some of the hard stuff, kindness or compassion when the sky is bleak.  I write so that others won’t feel so alone, so that I won’t either.  I write because I have always written.  Because writing makes me feel like my best self.
And I write to remain.

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I have listened to so many writers discuss their process.  I listen with awe as some describe their writing ‘discipline’ or ‘routine’.

What happens with me is a little bit more impulsive.  I will be mulling something over, some idea, feeling, injustice, bit of beauty, a phrase my child says, or a concept, something that has hooked my attention…  Sometimes it only lasts for a few minutes before I pull the laptop up from it’s charging station by the bedside table.  Other times it will be a few days of ‘background thinking’.  Then somehow… music.  Like a cosmic coincidence, I will hear a song on the radio, or begin humming a tune that reminds me of the very thing I am musing about.  I think all coincidences are on-purpose.  They are signposts. STOP!  FORM ONE LANE! WRITE! The music gets my fingers twitchy.

I get writing and write until it is all out and finished. I write in bed and directly into WordPress. I don’t plan it or structure it.  I just write.  It comes out with it’s own shape and usually, I like that. I hit publish.  If I don’t, I change it.  If I go back to it the next day and I need to tweak it, I do.  Having it already out there on the internet is powerful motivation to check and edit. I only add pictures after the writing; it’s too easy to procrastinate during the find-the-right-picture stage.

If I am writing for my other blog job, over at Nic-Nac, the process is slightly different.  Kylie will send me parenting topics she wants covered, or a link to an online debate, or a news article or parenting site forum that is discussing something juicy.  “An Idea?”  she’ll pop into the subject line.  I try to keep her posts to 600 words or less. When I write for Kylie, I write wearing a different hat.  In her pieces, I am not an unwell mum; just a mum.  I keep all references to ill health for my own platform.  I like writing her pieces just as much as writing my own, because when I’m writing for Kylie, I am everywoman.  I like that slice of life.  And writing for work is like …playing for pay!

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My genre is a tiny corner of the health sphere.  The two most prominent Dysautonomia blogs belong to Michelle, from Living with Bob and Carrie from Just Mildly Medicated.  Michelle’s style is far more ascerbic and funny than mine, she has a gift for presenting information in a way that is accessible for both practitioners and patients.  Her work makes me cry and laugh and she has incredibly cool personal style.  She is a superhero.  And Carrie, from Just Mildly Medicated  is stoic and strong.  She’s funny too and I love that she lists reading as a hobby.   Carrie’s a military wife in the States, with a big brood and bigger health problems.  Yet none of them too big to break her sass.  Both of their styles are similar to mine in that we talk about the heartbreak and the hardship of our disease.  But different because I am a new to blogging and I am not funny (according to my kids who know about these things). I am just finding my voice and trying it out.  And I hope people will find my openness helpful.  I’m not afraid to discuss the nitty gritty stuff.  It helps me.  I hope to find the best words to express what many of us experience.

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The three writers I have nominated for the Blog Hop are beautiful people as well as interesting reads.  I met all of them on my Blogging/Writing course.  It all finishes in two days time, but I know we’ll be a ‘group’ for much longer than that.  I have found ‘my people’ and I am not letting them go!  I like their work and so it follows, if you like reading mine, you’ll like reading theirs, too.  Click on over to their places in this Blog Land.  They will be telling you all about their writing process, some time in the next week. But in the meantime, there are lots of treasures to unearth where they keep their words! They’ll make you feel right at home.

Screen Shot 2014-06-14 at 8.56.09 pmYvette writes for her blog
Bear Loves Dove
She’s a creative, crafty, snap-happy, flower-loving, treehugging, motorbike riding, daydreaming, zen searcher who is never too far from a gorgeous ball of yarn and a crochet hook and is a bit obsessed with Peace Love & Harmony.

Sarah writes for her blog
Sarahs Heart Writes.
She is a tri-nation girl who is a champion of compassion and kindness, a dabbling cook and the worst housekeeper ever.  She is a traveller on this journey we call life, documenting its crazy, funny, sad and joyful moments along the way.

Kate writes for her blog:
One Small Life
Kate has two little kids who are her gurus.  She runs, she meditates and she writes about it.  She struggles with balancing a perfectionist streak with an imperfect life.  When she cooks and makes things it never looks like it does on Pinterest, but she’s learning to be okay with that.  Life is full of big   messes and little beauties and she’s trying to focus more on the latter.

When Annette asked me to join her in a Blog Hop, she nominated two others from our course who I love too.  Have a look at why Karen writes, and what Naomi loves. X

 

 

…and just because I haven’t been able to get this song out of my head since I wrote this post…