Writing is, for me, a fairly recent discovery. It began a few years ago when I got to the stage of having seen so many doctors who did not know about my condition that it was either… keep waiting for someone else to do something about this, or… do something about it myself.
Speaking to my friends about this, the general consensus was that I should write a book. They gave me many (in)credible reasons about why they believed that I was so suited to accomplish this feat, and the phrase “you are an inspiration” kept cropping up. I struggled enormously to comprehend their point of view, especially the idea of being an inspiration just by being stubborn, determined me!
The overriding problem was my lack of confidence and belief in myself. None of us should believe ourselves so capable and knowledgeable that we are no longer open to new, or corrected, knowledge. I believe it’s good to be humble. In this manner we retain our open minds and allow ourselves to keep growing and learning. Of course the part I’ve always been terrible at is the part where I should at least have still acknowledged my own skills!
No matter how hard I tried, I could not see myself the way my friends said they did. I am an expert patient, but I felt I was ‘only’ an expert patient. And I’m not the only one in existence. There are other patients out there with medical training, which gives them a much better foundation on which to build knowledge of our condition. The truth is, of course, that we each have much to offer and different foundations to build on. Individually, many of us have the knowledge, skills and motivation to write a book that could be helpful to other patients. But the biggest impact is when we share and pool our knowledge and skills, and thanks to the internet we have a fantastic communication resource at our fingertips.
So I worked on the humble-ocity (!) rating, privately wrote about my ideas, and things have been a-changing.
The internet gives us connections worldwide, and the information made available on it is accessible at any time of day or night from our own homes. If I wrote a book my fellow patients would need to hear about it, decide if it could be useful to them and then spend money to gain access. Whereas this blog is available to anyone who has access to the internet at any time and at no extra cost.
Writing a blog also seemed less scary as I certainly did not see myself as a writer. I began by drawing together the “What is CRPS?” page because gathering information into one place was my initial main goal. That page reads rather differently to most of the rest of this weblog because it is information based, and I was still finding my way when I wrote the initial bulk of it. I took to chatting a bit more in blog posts but it took a while, and some encouragement from others, before I found my ‘voice’: the way in which I speak through my writing. It turns out, all I had to do was tap right into the core of me and just be myself. Who knew?!
So I have a huge list of themes I’d like to talk about and silliness I would like to share, and they are scribbled in a notebook (a gift from Magic Dude for that very purpose) which I keep next to the bed in case of random inspiration! But when it comes to choosing what to write about in the moment I will usually go with how I feel, as I’ve found that’s the best way to put my heart into what I’m saying. I’ll look at my notes and one topic may jump out at me. At other times I might have a thought or experience that I feel like sharing, or perhaps a silly picture. One of my most recent posts was born of the incredibly poor media representation of people on disability benefits in the UK, (which you can read here). And rather than divert from my other writing in this blog, it actually reveals more about me as a person.
I never have a plan for what I’m going to write. I know essentially what I want to ‘say’ in the sense that I know how I feel about the topic, but I allow what I write to come together as I go along.
Sometimes this results in a bit of a hodgepodge of ideas, but often it just comes together in the natural flow. With some of my posts I have found that the process of writing is actually a journey of thought and emotion which naturally leads to a really honest core statement or point of view at the end of the piece. When this happens it is so instinctive that it feels like the natural way to end because I didn’t plan it. The words are raw, genuine and from the heart. And as they flow from me they feel right and lift my spirits. I used to be an artist, and in those moments where the words just flow from me I feel a similar joy in writing as I used to feel when painting or working with clay. It’s a ‘high’ of self-expression and openness, and in that moment I dare to expose a little more of who I am to the world.
(From-the-heart post examples include, This Too Shall Pass, Why I also live in cyberspace, and Experiencing cognitive change).
So I have no plans for my posts other than a general theme or topic. I write from my heart, how well this translates depends on how well I am at the time.
As for a title, I never start with one. The writing comes first, the meaning takes form, and the structure occurs with the logical order (depending on how logical my brain is at the time!). A title gets added at the end. I say “a title” rather than “the title” because as far as I’m concerned there are always many possible titles, so I just grab one! Perhaps I need to work at this? Hehe
I still don’t feel like a writer. Hang on… I think that has just shifted… I do see myself as a writer (of sorts) (sometimes)! A mishmash view resulting from ‘writing’ compromised by the effects of the ‘Auto Gnome’. But I am always just me. And when a piece comes together I can be pleased just as I would be if a painting turned out okay. We always see the flaws in our own work, but we can still be pleased when something turns out better than we expected. And there is joy in the writing, joy in the sharing of thoughts, feelings and valuable information, and a joy-satisfaction in the pressing of the “publish” button as I realize that I have shared another part of me and that it’s not scary to do so anymore.
Writing is now a part of my life, and I intend for it to remain that way 🙂
Hoorah! Keep up the good work! :o)
Thanks dude, I just wish I had more on-the-planet time in which to write! x
Your writing — like so much about you — makes my heart sing. I’m so glad you found your way to it 🙂 And I’d love a cup of tea!
What a comment to come down to in the morning, thank-you, I’m feeling all soppy (again)! The kettle is on… one tea for Isy Aweigh coming up… xox
I love this post….and especially the picture in bed….it sounds so much like me….I’ll ask magic dude to take some picts some days….Do you know than in 2010 on the French TV France 2 (Toute une histoire – some pics on my fb page) I declared I wanted to write a book….I started but now in 2 years crps is a lot worse and like you I think writing a book can be a huge toll on my health….thus I started blogging….and have a few topics written on a paper. Very interesting thoughts on human psychological attitudes to express their feelings….ok I finish my tea and need to get up 😉 xoxo
Fantastic hon’, it really is great when we can find a way to still do things we really want to. I am so glad you are blogging, you are making a great difference to the French speaking CRPS and Dysautonomia patients, xx