As I read Rosalind’s (aka cicoach) latest blog entry about a Hollywood producer, I couldn’t help but notice some points that we will be applying to our blog topics this week.
First, Rosalind’s words expressed a tone – what seemed to be a sense of frustration and confusion that resolved into gratitude and purpose. Writing our thoughts down has long been established as an effective tool in organizing our value systems and assists us in coping with the many challenges life throws our way. As people follow our words, they will automatically pick up a tone based mostly on themselves. Yep, whatever you are writing or saying will be interpreted based mainly on the listener’s own value systems, work schedules, emotional or physical states, and various other confounding variables that are impossible for you to gauge or control. Kinda scary, really.
Secondly, by looking under the surface of her words, we also begin to create an idea about her – is she… feisty? stubborn? committed? passionate? determined? You get the idea. It isn’t just the tone from the words she chooses to combine together, but it is also the particular words we choose to piece together that contribute to forming a perspecitve or judgment about her as a person. Words are very important tools that help us either get our points across or can easily derail even the best intentions – such as building lupus awareness. We need to choose our words carefully and practice using them often in order to help get our points across as close to their original intent as possible. With writing being the most popular means many of us rely on to divulge our lupus, revisiting the complexity and power behind the words we choose might offer us all some ideas as we continue to shout out our stories through Web 2.0-land.
Case in point – you will notice when I write a post in the wee hours of the night (as is usually the case), I will frequently misspell, use grammar that would make any gradeschool teacher scream and/or go off on tangents that sometimes never do make it back to the original theme- if I don’t remind myself to focus. For those of you who notice the ‘occasional’ lapse, well, that’s just the way it is. I do hope that the point behind my typos and transgressions eventually come across and I realize that it is up to me to make certain that I am more careful, diligent and rested when I post. For those of you who don’t notice my errors immediately, not only are you more forgiving, but you are also experiencing one of our brains’ many tricks in survival by ‘filling in the gaps’.
Unless editing is your profession, hobby, or you just like being picky, our brain is wired to cover processing information even when perception isn’t giving us everything. This survival skill has come in handy over the years offering us the gist of those types of situations where focusing on the details meant losing more than just our train of thought- it meant not getting away from something big and intent on dinner. Living with lupus is about survival as well and that nifty little skill can really come in handy for us. Yet, in order to educate others effectively, we need to be clear in creating the kind of ‘gist’ our stories are truly about by offering all the pertinent information so that the ‘gap-filling’ activities of others are kept to a minimum.
Rosalind’s post gets at what I wrote about here all last month. Expressing what living with lupus is like to those who don’t have it is very important towards building awareness. It is even more important, however, that we recognize that our target audience is usually those who already ‘get it’ – they have lupus, so they are the easy ones to write to and for. What about telling our stories to those who don’t ‘get it’? The speaker, Lauren Schuler Donner, highlighted in her post admits to keeping her lupus story to herself rather than sharing it with the outside world for fear of rejection. She is coming out of the shadows now, though, and apparently motivated by Melissa Etheridge’s personal courage which helped her in facing breast cancer. Once again, the voices of breast cancer out-cry those with lupus because they are expressed to those outside of the experience and not kept secluded or shared with only those who know what it is like. Whatever the reasons leading Ms. Donner to get behind the podium are, they really don’t matter – she’s there now. The gist of her tale seems to be of the need to begin speaking to those who are outside lupus so that they all might learn more about what is going on inside us.
In order to prepare our own opportunities in speaking out, we first have to gain some footing on what having lupus really means to us, how the perception of what we want to show others will appear as and what the tone we want to express will sound like. There are obviously no guarantees that our audience will hear, see or ‘get’ everything we want them to, but writing or speaking from our core will ensure that we can live with whatever we create. Our silence gives too much license to others in determining the content, legitimacy and value of our stories.
The coming posts will cover some of the ways our brains work in formulating our life experiences as it applies to living with lupus. From there, we will throw out some tools and suggestions for you to choose from as you create your “No Need To Whisper” speeches. This will also be a chance for you to begin exploring your own story with lupus in order for you, yourselves, to gain appreciation of just how amazing you are in living with it day-to-day. Even if you are just beginning your lupus experience, your story will unfold and you’ll be way ahead in getting it outlined early on. It is time for all of us to be the primary narrators of our own stories and to create the storylines we can live with – publicly, confidently and through the words we choose.
