Thursday, June 9, 2011

Compassion and the Power of Words

A few months ago, a friend shared with me the below video. It really struck a chord. Before I say any more, I'll let you watch it for yourself:

First, let me say that I understand why some people have a problem with this video. Blindness, of course, does not necessarily (or even frequently) render a person homeless or financially dependent. The blind are able to live just as independently and successfully as any sighted person, and indeed many work hard to do so. I certainly understand that.

However, I don't think that's really what this video is about. It isn't about the blind, the homeless or dependency. It's about humanity. It's not meant to evoke pity, but compassion. It's about finding the right words to open people's minds and thus change what they see.

After watching this video, I couldn't help but wonder about our own plight within the ME/CFS community. For nearly 30 years, we have been struggling for people to understand the reality of our illness and thus finally take appropriate action -- action which matches the full scope, urgency and severity of this disease.

Yet, despite all our efforts, the obstacles remain. How do we break through some of those barriers? How can we change our message so that people actually hear us? What can we do and say so that people finally see us?

Those with ME/CFS have a lot to be angry about. I'm angry too. I'm angry at the lack of care and treatments, the lack of funding and research, the lack of respect and recognition, the lack of government response, the lack of understanding within the medical community, the lack of public awareness -- the list goes on. I'm angry that I've lost over 14 years of my young adult life, suffering from a horrible physical disease that has no cure and no accepted treatments, and few people (beyond friends, family and some doctors and researchers) seem to care.

But is anger necessarily the best way for us to advocate? Are public personal attacks against those not on our side -- and even, at times, against those who believe that they are -- really helping our cause?

I recently wrote a very short email to Deborah Kotz, a health reporter at the Boston Globe. I wrote in response to an article she'd written in which she referred to this disease as "chronic fatigue" rather than chronic fatigue syndrome. I explained the difference between the two, and why I feel the word fatigue is both inappropriate and grossly inadequate. I told her a bit of my story and shared with her my 2009 video testimony. I never expected her to reply.

But she did reply. In fact, she not only responded to my email, she actually followed up with an additional blog post in the Globe. She posted my video, acknowledged that CFS is much more serious than she may have first realized, and asked the question: Does Chronic Fatigue Syndrome Deserve a Better Name? (Click on the link to vote).

I was able to reach this reporter not through my anger, but through her sense of compassion.

Most people are not even remotely aware of the full scope of this illness because no one actually sees it at its worst. The suffering goes on behind closed doors. Patients are confined to their beds, often in darkness, unable to speak, unable to tolerate interaction, unable to tell their story. Yet, these are the stories that need to be told. These are the stories that, once seen and heard, cannot be easily dismissed.

Is touching upon people's sense of compassion one of the more powerful ways we can reach others and advocate for ourselves? I don't know. But how can one read the stories of Lynn, Emily, Ben, Sophia or Zoe and not be affected? How can anyone watch the below video and remain blind to what they see?

Voices from the Shadows Trailer from Josh on Vimeo.

What I do know is that there have been years upon years filled with beautiful days that many of those with ME/CFS, confined to our homes and our beds, have not been able to see or fully live. And we desperately want to be set free. We desperately want to see every beautiful day, and have the freedom to live each one fully.