Saturday, June 20, 2009

Quick Update

Just to keep my few yet precious readers in the loop, I should let you all know that in fact I did not have to resign from my ME/CFS awareness organization. The woman who owns the name and the website has left the group, but we are continuing with a new name, WAMCARE (Worldwide Association for ME/CFS Awareness and Research) and are working incessantly with renewed vigour and excitement on a new website, our incorporation as a non-profit, and everything we previously committed and worked for. Our new website will be coming soon, but we have an official blog and official community already! Here they are:

I will be posting my personal story of what happened, along with my feelings as always. Since this is my personal site, I have that right and will not let my freedom be subverted further!

Wednesday, June 17, 2009

The Uglier Truth

I'm not sure how much to say about this, not knowing who will read it, but as I've always been totally candid on my blog, I see no reason to stop now. Despite all the fanfare and hooplah I've made about being a part of the Blue Ribbon Campaign, my part in it is now over. It came down to the only way to try to save the organization was for me to leave, and so I did. We put way too much work into it to let it go to waste, and as the president was willing to throw it all away because she didn't think she could get along with me, I've chosen to leave instead of playing any further part in it's destruction. I was encouraged to express my ideas, and also encouraged to call her on anything I thought could damage the org, and so I did. She seems to think that was about my ego, and nothing I said could change her mind. I don't feel like going into detail about it right now. Surprisingly enough, I feel liberated by my decision. I had been giving increasing amounts of my life away (for which I take responsibility for), when that was not the best thing for me to be doing. I got caught up in wanting to participate in everything that was going on, wanting to do too much, and ended up facing the reality that I'd over-committed myself and in the process had set myself up to be miserable. Now that I have my life back, I am excited about what I can do with it. I've answered emails gone long ignored from people extending friendship to me, people in my city who I could actually go out and spend time with. Lately all I have been doing is living my life online and ignoring the world close to me. I now have the freedom to try to balance both. I now have time and energy to work on the projects I'd committed to before joining the charity, and to doing the creative work I've been longing to do but haven't had time for. The weight of having too many things to do and people to answer to is gone, the guilt of not being able to do everything as fast as I want to is gone. I don't know what made me think I could ever open an etsy store while I was doing so much, but now that goal is far more acheivable.

I don't regret the work I did or the people I met or the things I learned. I have gained much confidence in my abilities, and whatever losses I'm now incurring I can let go of. I'm not sure how I'm going to make up the money that I invested, since I'm already less than scraping by already, but that was the risk I took by trusting someone I didn't really know. I did feel for awhile that I finally had found a greater purpose to my life, but I also realized I'd given up the one I'd already had, and I'm fairly certain the original one was far more necessary to my life. I guess what I'm saying is that this is all for the best, and I'm more than willing to move on with my life and embrace the next adventure.

Sure there is anger, but it is far less than it was while I was still trying to hang in there and work things out. There are also personal feelings I have towards the person who made this necessary, but I kind of don't feel like they are even worth dwelling on. Our association is over, so there's no point. I had tried to agree to disagree, but even that wasn't good enough. I'm just relieved not to have to keep expending energy trying to get along. I realized earlier it wasn't worth it but somehow still got tangled in argument anyway. How many times did I try to get out of it? It is hard for me to stop defending myself when I'm being misunderstood and misrepresented. Anyway, it's done. Next!

Friday, June 12, 2009

The Ugly Truth

This is the last thing I want to admit to myself, the last thing I want to have to write about. But I can't ignore this feeling and the eerie, terrifying familiarity of it. I can't pretend I don't know what it is, or why it's here. I don't want it to be true, I don't want to concede to it that I can't do the things I've promised, that I want to. I am so conflicted. And miserable.

Here it is again, something that I never thought I'd feel, not like this, not now, not again. I've given my life away again, and I'm having the unbearable thought that I don't want it anymore. I thought I was doing the right thing, for myself, for the world. I embraced my opportunities, I said yes, and yes, and yes, and now I've turned into a No. I am unhappy with my life, I have given away my freedom. I did it because I thought it was what I was supposed to do, I did not know it would be this lesson all over again. I thought I'd found new purpose, but in doing so, I turned my back on the one I already had. The one that allowed me to choose happiness despite the suffering. Now happiness is no longer a choice, I have no more choices. How can I back out? How could I possibly justify changing my mind now?

Or is this me refusing to grow up, to endure under the weight of any responsibility? Why can't I survive responsibility? Why can't I just live with them, live up to them, like everyone else, without feeling like life is no longer worth living? Why can't I be happy despite being shackled to my promises? This is so painful. I am letting everyone down. I have lost my spirit. Why should I have to choose between my spirit and the 'real world'? I just can't seem to exist like other people. How can I not feel horrible about that?

Oh there's more. There's the easy answer to this. I'm overwhelmed. Having cold feet. Spread myself too thin, bit off more than I can chew. All of these are also true. All of these are experienced by most people. Only they don't have the black death of depression waiting to swallow them up if they fail. They don't have the fear of it to make them so easily give up. Most people never have to contemplate whether their spirit is dying because of some simple choices they made.

Sunday, June 07, 2009

On Being an Advocate for Chronic Illness

If you are familiar with me, then you know that I'm a member of the "BRC Army" - a group of people who advocate for CFS/ME. Right now the organization is run by a tightly-knit group of 6, who found each other via Twitter and Facebook in April and May of this year. Unofficially, we are the "Board", the ones undertaking a flurry of activity, despite our CFS/ME and (two of us) Fibromyalgia. One of our core members does not have CFS/ME, but was close to someone who did, and suffers from migraines. Everyday we work together, we are inspired by each other's dedication and stamina in the face of our pain and suffering. We regularly admonish each other for not getting enough sleep, not eating enough, not having enough fun. We monitor each other's health and support each other in every way possible over the internet. None of us have ever met in person, and yet we've formed a strong bond as friends and co-conspirators.

I've spoken before about how big our vision is, and credited our founder, Andrea, for keeping that dream alive and expanding. I've written on my personal blog about how I've been inspired and found purpose in taking this opportunity to do good in the world. And yet, being a part of this campaign is more than that for me. As someone who has always seen her life as a journey (a spiral one!), I see my participation in this cause as another step in my self-development. I've already gained so much confidence in my abilities - to write, to have great ideas, to help others, to listen, to share, to encourage. This is in large part due to the supportive and understanding nature of the group of women I am blessed to be working with. We all share the same desire to live our lives for more than ourselves, our families, even our small communities. We share the desire to "save the world", or at least to make a large change in it. We are doing so by changing the way people see ME/CFS and the people who suffer from it. We are changing the way these people see themselves. By extension, we hope to change the world for all people with chronic illness, to facilitate recognition, compassion, acceptance and real action towards curing these devastating diseases.

It is my belief that the current 'way of life' in the civilized world plays a big part in chronic disease. This in no way infers that these diseases are due to "stress" or lack of coping skills. What I mean is that we are taught and expected to push ourselves to the brink of exhaustion. We are conditioned to believe that being sick, or even just needing more than 6 hours of sleep a night is a sign of weakness. That anyone who cannot "produce" is worthless, a burden on society and their families. I struggle with these beliefs every day. I struggle with the guilt of being sick - even though it is not my fault that I am so. The chronically ill do not need to deal with these feelings on top of their already overwhelming symptoms, but that is just what stigma forces us to do.

Being an 'advocate' means I have a responsibility to treat myself and everyone around me otherwise. It means I will stop and listen to anyone who needs to talk about struggling with their illness. It means I can not turn away, bury my head in the sand, or tell myself that it's somebody else's problem. I have chosen this path freely, but I was not quite prepared for the responsibility, and I am still learning what it means and how to deal with it. Daily I am given new challenges and they frighten me, but I cannot bring myself to say no, because this work must be done, and I am needed. And guess what? I have, with the help of my colleagues and friends, risen to each challenge. I have done what I considered was beyond my limits. I continue to prove to myself that I can make a difference. I am believing in something human-powered for the first time in my life. My experience with advocacy is validating me and empowering me every day. It is a joy to be doing this work, and to have found a place where I finally belong, where I am understood, and needed, respected and even admired. It is a joy to find myself being inspired and inspiring others daily. It is a joy to finally use my inborn talents to do something important.

It is not wrong for me to feel proud of myself, as I was taught growing up. It is our right as human beings to do meaningful things with our lives, and to experience the emotional rewards that come from succeeding at it. Advocating for chronic illness allows me to do something good for myself as well as the world. It allows me to feel like I deserve my long sleeps, my breaks, my feelings of pride and worth.

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I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.