Tag Archives: memoir

Multiple Sclerosis and Happiness?

When I was diagnosed with Multiple Sclerosis (MS), my main emotion was relief. Not distress, or sadness, or worry, but relief. You see, I’d been worried a lot by what on earth had caused my body to suddenly go weak and limp. Was it Cancer, or something worse, and was I going to die from whatever it was? If it was cancer, I was not happy, at all, we all n=know cancer is a terrible and possibly lethal thing to have.

So yes, when my neurologist told me I had Multiple Sclerosis, I was relieved. As far as I knew, MS wasn’t fatal. I actually already knew someone  who’d had MS for a long time and she was still alive … So I had a new chronic illness, did I? And what was this illness going to do to my life? I did some research, and was glad to talk with the MS Society of SA & NT. These wonderful people had a nurse I could talk to, they had resources and a monthly newsletter with all of the up to date information I wanted.

I still wanted more though, and looked for a book that would tell me what I wanted to know about how MS was going to affect me. I couldn’t find that book, so I decided I would write the book I wanted to read … I got to work, once I was able to, and with help from the MS Society SA & NT, I did the necessary research, and applied for funding to get a mentor to assist with writing this information book/memoir all about how MS was for me, and all I knew about MS from how it, affects, medications, treatments, everything I could think of.

I applied for and received a grant from the Richard Llewellyn Arts & Disability grant program to pay a mentor to help me write this book in verse, an idea I had that felt like a touch that added a different touch to this book. A verse memoir about a chronic illness, not every person was able to do that! Being able to write this book, and to then get it published again with assistance from the MSSSA&NT, this was an empowering thing to be able to do, when my body had let me down in such a disabling way. I was able to get copies printed of this book with the Society’s printer at a very good rate, and sold that first print run. I’ve since printed more copies of this book, and still sell copies every now and then. Being able to do something like this, that many able bodied people would love to do, but haven’t done is empowering too.

So yes, MS has given me things to be proud of – a book that has helped me and other people with MS, greater knowledge about self publishing, greater knowledge about doing bigger things than I thought I could do. I know that if I decide to do a big thing, I will be able to do it, because I know so much more about these things than many. Knowledge is a powerful thing, and being able to use that knowledge in a big way, is super powerful!

My medication has changed since I was first diagnosed, and the med I am now on is much easier than the weekly injection I began with. I began with Avonex, and am now on Gilenya, a tablet I have every morning, simple! I feel more in charge of my body, and I’m glad to feel that way. I started MS with a walking stick and a cane, and now they’re in the back of my car, unneeded. I hope things stay this way, but knowing that things could change. I hope if they do take a turn for the worse, I will again be able to find the help I need.

I am living a great life, with more books being self-published, and with the writing group I’m President of doing good community things, Yes, I’m very happy indeed!

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Thinking about Things …

What do you do, when something big comes into your life? You look at it, perhaps research it, and if it’s something that is going to cause changes to your life, you work out how you can make it work well for you.

Chronic illnesses are certainly big things in your life. Some you were born with, and you grow up with, but others can suddenly appear in adulthood, with you never knowing the potential for having them was there. Some just come along, out of the blue, and you’re hit with a new ‘normal’ to work your life around.

The one I’m thinking about is the one that hit me, in the latter form of Chronic Illnesses. I have no idea of how or why the cosmos decided I was going to have this illness to deal with for the rest of my life (or until they find a cure). MS came along for me when I was in the later part of my forties. My life was going along well enough, I was studying after many years away from school. The study I was doing was going to be my path perhaps to a full-time job. Or if not full-time, then certainly a paid job, instead of the volunteer jobs I’d been doing since our son started upper primary school.

When MS came into my life, I decided I was not going to let it bring me down, but I would take advantage of it to think seriously about what I truly wanted to do in my life, and do it. I was involved in various writing related things, and also involved in Lawn Bowls. I’d had discussions with my skipper at Lawn Bowls about my interest in poetry, and she had told me I had to make a choice between the two things. I didn’t agree with her -I could do both, but it did make me work harder on whichever thing I was suppposed to be doing, and concentrate in a more focussed way on whichever it was.

So when MS entered, I decided what was important to me, and how could I make it work? I have been the President of the Adelaide Plains Poets group since 2005, and I knew that was important to me, so I worked harder at that, making it more important to me. I was involved with a poetry reading event in Gawler, and put more work into that too. I had begun putting together a poetry collection at the time of my diagnosis, and it was extremely personal and I made sure MS didn’t stop that from being launched.

Once that was launched, I began work on a memoir about this crazy new disease, and what it was doing to me, and how my life had changed because of it. I finished writing that book, and self-published it, with assistance from my new and important group, the MS Society SA & NT. I had discovered abilities in myself I hadn’t known I had, and I found many people who were happy and more that willing to help me, and be involved in the writing related things I was doing.

They are still with me, passionately being involved and putting out the word to others that creative writing is an important way to live your life. My self-publishing is going ahead, I have my first poetry collection published by an actual publisher due out at the end of July this year (2016), and I am in the middle of finishing another self-published book, which would never have been created if I hadn’t developed Multiple Sclerosis. When I think on that, it hits me, it really hits me hard, in a funny way – Life surely is a funny old thing!

This blog would never have been created, without the MS, and I would never have had the walking aid OLYMPUS DIGITAL CAMERA I recently loaned to my husband when he needed a walking aid. MS is Mighty Silly, and Marvellously Surprising! If you’ve had something major hit you and make you change your life around, I’d love to hear about it!

 

 

 

On getting a gig to talk about my new book

Well, today I was at the Gawler Poets at the Pub Poetry Reading, which I help to run. My co-cordinator and I worked out what we’ll be doing for the next two months, October and November. Gawler Poets at the Pub is on from 2 pm – 4 pm on the last Sunday of every month except December, at the Prince Albert Hotel. I’m thrilled to be able to announce that for the October session, I will be the guest poet, talking about my just released book, Yay!

My book is a memoir, written in verse and with some poems included. It deals with my new life, living as well as I can with MS. Multiple Sclerosis is many things to many people. For some people, it is a huge problem, but I’m one of the lucky ones. Yes, MS brings me challenges, but I’m doing my best to meet those challenges, and continue living a life that works well for me.

People have told me I inspire them, and I’m glad they feel like that. I don’t feel that special, but if others think I am, then who am I to argue! 🙂 If reading my book can encourage others to live a better life, a happier life, a more positive life, then I am happy, my role in life is working. I am here to help others, and writing and sharing my words is my favourite way of helping.

If you would like to hear more about my lived experiences in life, feel free to contact me. I am keen on furthering my public speaking appointments.

 

 

On Contemplating Another Print Run

When one is a self-publisher, one is in charge of making all of the decisions regarding the published book. My most recent book, the one this blog is all about, has been launched and bought by others. It’s been sent to libraries, and now my job is to sell or find new homes for copies of my book. 

The selling is going well, as far as I know. I have copies out in various places, available for purchase, and I am yet to check up on how those sales are going. That will be a task for next week. I plan to visit most of the MS Peer Support groups in South Australia (the ones that aren’t too far away). Another task for next week then is to contact all of the groups I want to visit, and arrange things…

This is fun stuff, and I’m very much looking forward to meeting up with friends, both ones I already have and others who will become friends once we meet! One of my big decisions to make soon, is when or whether to order another print run of my book. The initial print run was for 100 copies, and I now personally have about twenty copies left in my possession.

The MS Society SA & NT will have an article about my book in its next issue of Network Magazine. I expect I will receive some enquiries from people about getting hold of their own copy, well, that’s what I HOPE for anyway! 

This is fun, and I’m being careful about the money received from book sales, so I can pay for the next print run. I was fortunate, and was the recipient of a ‘Choice’ award from the MS Society SA & NT. My award went to having 100 copies of my verse memoir about my new life with MS, printed for free. The printer was the Society’s printer, and I’m thrilled with the great job they did printing this book.

For my next print run though, I will have to pay for the printing. At this stage I don’t know what it will cost. So another task for next week, or the week after, is to ring the printer, and talk costs with them. I’m looking forward to getting it all going…

The photo here is me making a point at my book launch. 

Image

 

photo by Martin Christmas

Mick and Jane are very excited about their big day happening soon!

 

 

ImageImageMick and Jane had a kind of rehearsal on Sunday, a mini launch of sorts. There were interested people, and there were words spoken. There wasn’t the book that they feature on and in though. You can have a book launch without a book, but the organisers decided not to go down that path.

Instead, that day included Carolyn Cordon giving a reading from her manuscript of her verse memoir ‘Mick, Jane and Me – Living Well With MS’, on Sunday 25 August at the Gawler Poets at the Pub Prince Albert Hotel. Mick and Jane were a little concerned that Carolyn seemed so well known and comfortable at that hotel, and wondered a little about how and why that works so well for her …

Anyway, the event they’re excited about is at a far ‘nicer’ venue, a place where books, not booze, take precedence. This book the memoir is still not quite here yet, but Dave the Printer has assured Carolyn that the handover of the book will occur in plenty of time for the big book launch. He spoke to Carolyn is such a soothing manner, she seems to have calmed down, just a little …

It seems things are going well, with the memoir apparently getting bound today. Jane got a little bit silly at the thought of this ‘binding’, but Mick told her it wasn’t THAT kind of binding, and she settled down again. Sometimes Jane gets quite flighty. It’s a good thing Mick is such a sensible chap…

So, come Wednesday, the book launch will be on, and Mick and Jane and the memoir of course, will all be on show, to be admired by the crowds there to help to launch Carolyn’s first non-fiction book. Mick thinks it’s about time she moved away from the fiction (lies) she’s been writing in the past …

 

Memoir Teetering on the Edge

Well, I think I’ve done it. Today I spent quite a few hours working on my memoir, editing the proof copy sent to me by the printer, and by George, I think I’ve got it!

My memoir is all about my new life since I knew I had MS (multiple sclerosis), and before that too. When you receive a diagnosis of having MS, you can bet you’ve had it for a while already. I was diagnosed with MS in 2010, and my neurologist thinks that, according to my MRI scan, I’d had it for five or so years already.

My neuro saw the scarring of my central nervous system and used that, as well as my symptoms,  to make his diagnosis. MS is all about this scarring, because the scarring is what causes the symptoms one has.

Anyway, at the  moment, I have no active lesions, thanks to medication and my body’s repair system. I’m happy on my current medication (Gilenya – a daily tablet) and I hope I can remain the way I currently am, or better, for a long, long time…

Getting back to my memoir… This memoir is, I hope, going to be useful to people who have MS, and to their family and friends. Having MS can be an isolating thing, where no-one seems to understand what you’re going through, not even you own doctor.

My memoir tracks my journey, talking about my symptoms, about medications, about support and a variety of other things, as they occurred to me in the writing. The memoir is in verse, and there are poems there too. I’m a poet, writing poetry is what I do…

I’m living well with MS and I sincerely hope that my words can assist others to live well with MS, or other illnesses. Life has been tricky, but I’m still enjoying my life. I hope you can enjoy your life too!

“Mick, Jane and Me – Living Well With MS” will be launched at the Tea Tree Gully library on 28 August 3.00 pm. There will yummy food and drinks available, and of course, copies of the book will be available for purchase.  click here for more information about the launch. http://www.teatreegully.sa.gov.au/page.aspx?u=841

If you’re interested in this book, contact me at jeebers@aussiebb.com.au The book price is $20.00 and $2.00 from every sale will go to the MS Society SA & NT.