As I begin to prepare for the workshops this fall, I am coming across the theme of communication and the complexities (as well as opportunities) the process offers us in expressing ourselves.

Sitting around the campfire and spinning a yarn has been a core reason in our ability to survive as a species - by developing meaning to the ’stuff’ we go through on a daily basis.  The field of Narrative Psychology examines the social constructs used to help us derive those meanings.  I re-visited the 2005 Columbia study and others that identified the use of narrative and how our brains work in this process, mainly because that was the theme of June and necessary as I address the thousands of lupus/chronic illness bloggers out there.  Standing in line at the grocery store and running across an article in the July issue of Good Housekeeping made me realize that I am not the only one taking another look at the use of narrative (Good Advice section, pages 119-125; ”The Story That Can Change Your Life” by Louisa Kamps).

I will let you read the article on your own, but want to mention some of the key points this article (and the studies referred to) offer us as we blog away.

• Ms. Kamps provides an overview of Narrative Psychology that, simply put, shows us how we ‘talk’ about the events in our lives directly affects our physical and emotional/mental health. 
• In our discussions/writing of these events, those of us who tend to feel more secure and are more ”resilient” in our coping skills tend to skip ahead to highlight ‘getting through it’.  Those who tend to feel more anxious and upset or depressed will replay their ‘failures’ in situations and “re-live” their emotions over and over again.  
• Ms. Kaspar mentions the study conducted by Dan McAdams, a Northwestern University psychologist, who has found that the use of plotlines in our ‘tales’ is useful to get to the steps beyond - in our case here- illness.  Seeing our lives with “characters, themes and villains” introduces context to situations that seem to help us work through the challenges.  He also notes that re-stating or re-telling our stories may support us in pulling ourselves out of the “victim” role and into more of a “hero” role.
• In the 2005 Columbia University study, they explored the use of third-person perspective by subjects who were recalling an upsetting experience.  Ethan Kross, Ph.D, was the lead investigator in the study and he summarizes that those individuals who used the “he said, she said” perspective were “more objective” and were able to put their experience in the past more quickly than those who used a first person perspective- where they found themselves back into the emotional turmoil of their experience.
• Kross and colleagues also discovered in more recent studies that those individuals who used the third person perspective also tended to think about the experiences less and showed lower blood pressure in the re-telling than those using first person.
• Our narratives don’t have to be accurate in order to help us in developing or reinforcing our identities.  Our brains and memory, you will recall from a previous post, has a way of storing pieces of experiences- or the gist- and then fills in gaps as needed.
• If we view negative events in our lives as “chapters”, studies show that it minimizes the possibility of them “recurring” throughout our lives.
• According to Jonathan Adler (doctoral candidate from Northwestern University), when physical characteristics are used to describe an experience (the example given in the article was ” a great weight on their shoulders”), individuals seemed to recover from the experiences more quickly than those who didn’t.  In addition, he also noticed that those who saw their negative experiences “coming out of left field” were happier than those who maintained a belief that they may have caused their trouble. Having some distance from difficult events can help you gain some comfort in addressing them.

 The article also covers some of the benefits and tricks in the narrative process - it is actually a pretty good read for those interested in journaling or blogging.   The emphasis in this article and in Narrative Psychology in general is the same as what we echo here in the MLWT program: 

1. We all have stories to share, common denominators in who we are and have valuable perspectives that we can all draw from each other.
2. Even with all of the information out there about lupus and the challenges we face in living with it, we can often find ourselves either stuck or overwhelmed with the whole experience at times.  Recognizing individual differences and finding what works for each one of us helps us gain more appreciation in what we have already accomplished -moving us forward with confidence to each new challenge.
3. Putting ourselves through hands-on activities will give us more personal control and creative opportunities that can benefit us physically, emotionally/mentally, socially, and spiritually.

Remember to check out the bulletin boards for miniblogs (jumping on the minisode bandwagon) and feel free to throw in some of your own.  The blogging community is like the proverbial “chain” - only as strong as the weakest link.  Join in on the any of the blogs you visit and make the “community’ aspect of blogging a reality rather than just a buzz word.

Enjoy your weekend, everyone!

Knowing how stress and creativity tends to negatively interact, I realized today just how out of control my days have become lately.  A dear friend of mine, and one of the MLWT Advisory team members,  Douglas Franklin, recently gave me a homework assignment in researching my signature strengths often used in learning about authentic happiness and the evolving field of Positive Psychology.  Being a Disability Specialist here in the Portland-metro area, he felt that in order for me to explore who I am, I have to first begin to see what strengths I use in putting together information and experiences.

Now, let me just say that when I received the results from this test ( I cheated and took the short version), I erupted into a true guffaw.  What it told me was that my #1 strength was Creativity !  Believe me when I tell you that I started out an art major in college only to follow the many who eventually find themselves as Psych majors to explore why the heck they were Art majors.  My homework was to use my primary strength when faced with a problem or challenge, because that is what I supposedly rely on most anyway.  

Here is where my last post comes in -for me to prove that I had a creative bone in my severely pale and less-than-toned body and forget tomorrow-thinking.  The folly went something like this:

Knowing all I still had to do and convincing myself that the next few days will be worthless because of the heat, I allowed my brain to intervene- “There is no way to know the future for certain”. Choosing present-minded denial (and knowing the odds that the weather people might be wrong), I dug out the perfect box of crayons -the box of 48 that I had been secretly admiring, but too conflicted to use and ruin -  and let my creativity flow.  The minute I opened the box, that familiar smell washed over me and I did honestly feel giddy.  Then, something weird happened…I found myself in second grade crying because Kevin, the classroom bully, had picked up my new, perfect box of crayons and threw them to the floor -crushing all but two of them.  Even though I am a little embarrassed to learn I was still harboring resentment about an incident (which happened SEVERAL years ago), I was astonished that it wasn’t the crayons that brought it all forward, it was the smell.  I didn’t even make it to looking for a coloring book from  my daughters’ rooms - I moved on quickly like a little kid toward her next adventure - because I was determined to be creative and this episode just ticked me off.

Next, I searched high and low for my pets - two cats and a blind, border collie-aussie mutt.  They were a little taken back by my sudden interest in cuddling, but adjusted quickly.  That is, until my shoulders began to tense up, heart began racing and I abruptly stood up and shouted “Will you ever stop shedding!” In the dappled sunlight in my living room, I could barely see the three of them through the floating mass that I assumed used to be breathable air.  They took off for the four corners of the world, I mentally listed another chore to do by evening, and ‘creatively’ grabbed my cell phone on the fly making it upstairs before the dust literally settled.

I must have called 10 people whom I have always relied on to crack me up when I needed it.  No one, not one, was available.  Not wanting to believe that they actually had better things to do than entertain me, I justified their absences one by one remembering that they mentioned being out of town, had visitors, were working, kids were out of school, blah, blah, blah.  As I sat there imagining all of the fun they were having, I noticed a twinge in my chest and wondered if a person could actually have heart failure realizing that the world didn’t evolve around them?

Thinking that I needed some air to calm myself down, I went into the backyard - the great outdoors that I enjoyed so much as a child with pick-up games of kickball in the middle of the street, small insects and reptiles to love to death (in a canning jar with holes in the lid) or walking the two miles to a friend’s house without any concept of personal safety.  That was usually only threatened if I wasn’t home in time for dinner.

Here it was, my chance to finally find that creative outlet and forget about tomorrow by focusing on the present.  I found a nice patch of grass nestled away from the additional chores of my garden, the dog’s generous donations to fertilizing our yard and the dusty, cob-webbed patio furniture.  I lay stretched out seeking the sensation of the earth rotating and the shapes to discover in the sky.  Of course, if I could just open my eyes without them feeling like they were filled with gravel, stop sneezing long enough to feel only the earth move and talk my skin into not reminding me that the lupus is back in it after the long five years, maybe something creative would have come of the experience.

By now, you have probably smiled to yourself thinking - “yeah, this is the part we’ve been waiting for - you admitting you’re full of beans” (or something to that effect).  That’s exactly what happened.  I knew I could either cry or laugh and, while laying there deciding, I just busted up.  It wasn’t about any realization that I was ‘wrong’ - it was because I did exactly what a kid would do.  I must have looked ridiculous in my running around, screaming, fidgeting, utter desperation in using what I thought was to be a creative process toward building a ‘happy’ present.  The creative part is actually important right now - at the bitter, exhaustive end to seeking that child’s version of the holy grail of experience - avoiding boredom by creating diversion.  What I thought “creative” to mean was not limited to the definition of artistic or imaginative.  This test, by their definition, sees me as someone who needs to find new ways of doing things.  Who with lupus hasn’t had to do that? 

For this short period of time, I didn’t think ahead to the future - of not feeling well after all of the running around, how being in the sun will make me tired and my skin crawl, how I didn’t get anything on my extensive list of chores checked off.  I just spent an hour in search of my present by revisiting my past, linking with my self on a physical level and am all the wiser for it.  My future will be based on what I tried  today and how I will try it again being more open to not stressing about it like an adult.  I am so focused on what might happen sometimes that I limit my own possibilities- that isn’t good for me on all levels.

Life can be a series of ‘failures’ to be sure, but this afternoon, I was there looking for happiness and ended up with a reminder of just how tied in my physical state is with emotional chaos.  No wonder I flare - I often forget how much the two are so intertwined and only focus on the medical aspect to living with illness.

Right now, after taking a benedryl, I just finished coloring a picture of Rupert in Professor’s new flying machine with my dog Perx laying at my feet, bearing my soul to you and watching what looks to be like a penguin in a top hat floating through the sky.  Whether its the experience or the wine I’m enjoying, my body and mind finally feel as though they have connected.  Tomorrow, I’m back to work - but right now, I’m creatively trying to figure out how to find Kevin and tell him no “hard feelings” - forgiveness and mercy was my lowest score.  This one might be more challenging…

Here’s a link to the test I took - give it a shot.  If there is anything we with lupus like to believe, its that we do have strengths that often go unseen or noticed. Let’s start exploring what those are…and make the most of them.  Signature strengths assessment : There are two versions, depending on how much time you want to spend or your attention span…     http://www.authentichappiness.sas.upenn.edu/Entry.aspx

How often have you heard others, some well-meaning and some not, say that you need to look more on the “brighter side of life”? 

There is a great deal to living with lupus, or any illness, than just changing your perspective, changing your behaviors or just putting on that happy face when you’re around someone.  When you have your health, its so much easier to play the role you are expected to because you know that eventually you can go back to being you later.  If you are ill, being you may not be who you are wanting to be, that happy face sometimes just can’t be presented when requested and later will only mean still being ill. 

One of the lessons any person new to lupus should hear - and one us veterans need reminded of- is that you will never have a firm idea about what will be in the future.  This is true for the human experience in general, but it is an especially rough bit of reality for those of us who live with illness.  Being healthy and young doesn’t tie you into a sense of time like being unhealthy or age can.  That is one reason why people expect you to present that stiff upper lip, because they have no true understanding that it isn’t just them you’re trying to be more positive for - its yourself, too, all the time.  That means that you are always putting on the front with no ‘down time’ to relax and be who you want to be.

Kathy Charmaz’s work on illness and loss of self, as well as Kübler Ross‘ work on the stages of grief, are used often in exploring the processes in which illness/loss can change how you see yourself.  These linear, conceptual or stage ways of thinking are valuable in understanding some of the more emotional effects from trauma, but they might imply to those of us with lupus that there is a plateau, path and/or an ultimate recovery point that we can reach.  Knowing that lupus and other autoimmune-related diseases rarely give us any breathers, certainty or consistency in symptoms, the stage-type thinking isn’t going to work for us very well.  Therefore, emotionally focusing on the future- as we would if we were well or young- may not be the most self-supportive ways to go about living with our illness.

The brain, in general, is not designed to give us the ability to know the future.  Paranormal psychology and spiritual beliefs aside, the overall understanding about how thinking ahead works is basically a matter of taking our present condition, throwing in a pinch of our past experiences, stirring well using imagination and calling it ‘tomorrow’.  Daniel Gilbert’s book “Stumbling on Happiness” (Vintage Books, 2005) http://www.powells.com/s?kw=stumbling+on+happiness&x=51&y=14 gives a fun and informative overview of this limited - but fascinating - process going on in our brains.  What we see as our future is more likely our present, with a touch of creative license.

The key in creating the type of future you want would be more beneficial if you focus on your present- which you can do something about in one way or another.  Perhaps taking a look at living with lupus might best be done by remembering ourselves as that child during those long summer days.  Back then, our future seemed so far away and we were busy entertaining ourselves in creative ways that made us ‘happy’ (and, if lucky, didn’t get mom mad).  Finding treasure in the types of things that were often so simple came very naturally to us and, as American’s in particular, this is not something we take time in doing as we get through our days bogged down with details and deadlines.

Today, for just a few minutes, use this simple reminder - “There is no way to know the future for certain” - and:

•  grab yourself some crayons
•  play with your pet
•  find someone who makes you laugh that you can be silly with
•  seek out shapes in the clouds, …etc. 

Think about what you used to creatively do as a child on those summer vacation days that went on forever and didn’t require a lot of physical motion.  You will be surprised by how many things you can come up with and can still do today.  It may not cure lupus, take away all the pain or guarantee a miracle.  It will, however, give you some invested time into your future by making your present one that leaves you with a smile, if only for a moment, and meant just for you. 

As I read Rosalind’s (aka cicoach) latest blog entry (http://workingwithchronicillness.com/) 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 highlighted in her post (Lauren Schuler Donner - http://www.latimes.com/entertainment/news/la-et-cause13-2008jun13,0,4603762.story) 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.

So often we forget that, even though Lupus tends to affect women most often, there are many men who are facing the same challenges.  In fact, lupus can sometimes be even more severe for men in terms of symptoms and coping.  Although it isn’t easy for some of us women to ask for help or accept the changes in our lives, men are often inclined to prefer not to acknowledge or seek support in this ‘women’s disease’.

On behalf of us here at MLWT, we want to be sure and reach out to these men/sons/fathers/brothers/friends whose lives have been affected by lupus.  We wish all men who are living with illness, in addition to the men who share their lives with other’s living with lupus, a very peaceful and loving Father’s Day - whether they are fathers or not. 

You are not forgotten.

As we have been working on getting the site foundation set, we have been meeting and learning from so many individuals with strong, encouraging and inspiring stories. 

Recently, I heard from Leslie (http://gettingclosertomyself.blogspot.com/ )  who’s story was similar to my own with one exception being that she has had to live with illness (lupus and R.A) at an earlier age than I did.  I can only guess how difficult it must be for those of you who are young and facing illness - my heart goes out to you all.  Leslie’s blog is one of several stories out there where having to make adjustments and changes to who you are, what you do, and how you do it can be so daunting at an age where you’ve just begun independent living.  Looking down the road through young eyes is very different than having the gift of memories in doing things free of pain, limitation and with our peers.

What I find inspiring, from Leslie and others that I have met this week, is the spirit behind the illness.  As life can be for all of us, whether we have chronic illness or not (yet), it is the commitment we make to ourselves that must be the driving force in defining who we are, what we CAN do and the way we plan to live our lives with what we have to draw from.  Seeking understanding from others outside our own skin is a very basic human need - a connection that feeds our primal nature.  However, acknowledging within ourselves that we are doing what we can is so important and leads us to a more honest view of life that serves us better.  The honest anger, the honest joy, the honest disappointments, the honest struggles…having the honest assurance that we are who we are and knowing that we decide that for ourselves.

Keep the faith - share with us here your stories, either on the blog or on the bulletin boards - offer some encouragement to those who are perhaps feeling a little overwhelmed by it all.  We all have stories we can be proud of and listening to the stories of others ultimately gives us a reason to listen to our own. 

Wishing you a wonderful weekend ahead~