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!