Real life, Meet Blog Life

I've been musing for a while, as you know if you've been sharing this journey with me, how open to be with the details of this whole extreme healing situation, with people beyond my most trusted allies (yes, I've probably been playing too many RPG's) for a great many reasons. These are the three biggest:

One - many people, and many doctors in fact, do not believe Myalgic Encephalomyelitis (ME) is real. And if they do, they probably know it as Chronic Fatigue Syndrome (CFS), the unfortunate names that leads to a great many different types of misunderstandings, like - gee, I'm always tired too, what's the big deal? The fact is that much of Western society is perpetually tired. This is not fatigue, and there is a big difference which is unfortunately not widely understood. Also, in ME, fatigue is really very very tiny part of the problem, and more of a side effect - you can read all about it on my Symptomology page. My story could perhaps convince some people that this is indeed a severe and very real illness, or at least raise little bits of awareness. On the other hand, I could face backlash.

Two - my personal and professional lives are very much intertwined, what with my Mom being my boss but not really, and my son being friends with my former students and whatnot. So to open up in my personal life to casual friends and acquaintances, means opening myself up in my professional life, and opening up in one's professional life is not normally considered the correct and professional thing to do. Especially when you combine reasons one and two. People who lose respect for me in a professional situation may very well project that onto my mother, (although that is less and less likely the longer I am on medical leave) so it is not only my professional life, but hers as well.

Three - privacy is privacy. I'm not generally a very private person - if you ask, chances are I will tell. I'm also not known to hold my tongue, and quite enjoy sharing my opinions. But there are parts of my life I am not particularly open about, which I only share with those people I really feel I can trust to accept those aspects of me. In fact, I don't even write about them here. I know that choosing vulnerability has the potential to make me stronger, so long as it is a choice made from my heart. I also know that no matter what, privacy is really more an illusion than anything else. Especially online. So while I have kept this blog an open secret, and I use my nickname rather than my full name, and I keep the details of my life here (including my pictures) such that if you know me you will know it is me, but if you do not know me there is no way you could find me through just this blog, I am aware that everything I write here has the potential to come back to me in reality. And since I do believe that everything we do does come back to us anyway, being public with my inner thoughts is just an additional layer of that.

There are also many reasons this is coming up now. My mom has already told people in the Montessori community, as have I, following her example, about my ME. Last week at that awesome meeting I wrote about, I actually said the words out loud to two parents at the school who did not know: "I have Myalgic Encephalomyelitis" (I always have to say it slow, because I have a hard time pronouncing it). And to my surprise, when one mom asked what it is (the usual response) the other jumped in and explained, because, as it turns out, she has Fibromyalgia - the sister illness to ME. So incredibly validating! Not only does she know about it, but she understands it. And now the words ME are out there, in the school community, and the response was such a positive one, so full of concern and interest, that I'm actually thinking - what the heck - why not live fully in the open? And then I talked to my therapist and realized this is just another manifestation of the all-or-nothing mentality, and probably not the wisest course of action. Gosh I'm glad I have her. So now I'm asking myself: why not open up a little bit more, and see what happens?

So far, most of the people who read this either don't know me, or are really close to me. I feel like I'm hiding from everyone in between. I don't like hiding. It's not like I'm writing anything I wouldn't say out loud to anyone who would care to listen... it's just easier for me to express myself in writing than orally. And I know, thanks to your comments and e-mails (and the fact that you keep coming back - we're averaging just under 500 views a month) that reading my words is helpful, validating, inspiring, and at times amusing.

There have been a couple of times when I've wanted to send a post out to someone who I know would be interested in my thoughts on that particular topic, but then I think - that means they'll have access to everything else I've written here, and is that a good thing? And then I feel this ridiculous need to go back and re-read every word I've said for something they might find offensive... too many marbles get used up that way.

The school mom with Fibro expressed interest in this blog, and I did not even question whether to tell her how to find it - it was so spontaneous, and I know she has had her own struggles and is a non-judgmental person who asked out of compassion. I'm sure she's been here by now. And if not, then soon enough. And then she will have access to all I've written, as will anyone with whom she decides to share. And, surprisingly, that is ok.

Recently two friends made personal announcements on facebook that to me were very brave, and very inspiring. Both, funnily enough, were part of my shamanic experiences. One posted that he is changing his name, or rather, re-appropriating his real, un-anglicized name. I can imagine lots of people scoffing at that idea, and undermining a real act of personal empowerment. But the responses were overwhelmingly positive. The other posted that she was coming clean and announcing her Parkinsons diagnosis. She was diagnosed shortly before I was. When I saw that, I gave her kudos, and told her I wasn't ready to be public with my diagnosis. But I think I am now. At least a little.

The other day a neighbour - lovely lady, whose cat likes to sit on the stoop and guard my house at night - and I were talking about a giant weed that was growing just outside my gate. I told her how frustrating it has been not being able to get to those, and she asked me about it. I told her - I have ME, and gave her the little explanation as to why she sometimes sees me with a cane and sometimes not. She not only pulled the weed a few days later, but came by the other day with some fresh from the farm corn she picked up on a trip North of the city. I hear a lot of stories of people who are not taken seriously, and I get scared. Interestingly, in my life, it's only been a couple of doctors that have not taken me seriously. Everybody I have told other than that has been compassionate and understanding.

These experiences are coming together for me, and I am seeing that none of my fears or apprehensions have come to pass. That there is nothing to lose (because anyone who will judge me will probably judge me anyway), and maybe something to gain. I do believe that reading about other people's experiences and struggles help us deal with our own. That's why we read biographies, and listen to motivational speakers. We need to connect to other people with relatable situations. I know I enjoy reading the words of others who see life like I do. And most illness blogs are, ummm, how can I put this.... not quite as positive as this one. There are a lot of angry people who feel victimized out there, and they have every right to feel and express that. I just don't find it helpful. There are fewer of us who really see the value in acceptance, in surrender, in using the opportunity life has handed us for growth. I think it will also be good for me, to stand up and speak about my experience more openly. It will help me own it more fully.

So kind of by coincidence, I'm deciding to open the doors a little wider, and put my name and face to the words that fly so freely. I choose to allow people who know me personally to choose for themselves just how much they want to know about me. I will change my photo to one where you can actually see my face and I will link this to my facebook - maybe starting with a group of spoonies I know, and expanding to my actual friend friends... See you soon!