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.


  1. I'm sure I say this all the time, but well said! And well done. I linked to the Globe post on my facebook and twitter.

  2. Thank you for this beautiful post and video, Laurel. It's a good reminder for me as well. It's so good to hear a journalist had the courage and decency to actually change the way she wrote about our disease!

    I've been in contact with a couple of journalists, many of whom expressed their sympathy and compassion, but their reporting hardly ever reflected that apart from private email conversations, which I found very frustrating.

    Last week, one journalist really crossed my personal line: He sent me a triumphant email about the Science EEC, hoping that his somewhat ruined reputation (he had written an inaccurate and biased article and received lots of criticism from ME patients). This last email was too much for me, I couldn't believe that he was actually glad to be the one to dash our hopes for treatment! So I wrote him a very emotional message, asking him when people like him would finally understand how ill we are and that we needed help. I sent him Emily's story and more about mine.

    I never hear back from him, and now I feel bad for getting so emotional when clearly all he was interested in was the science part of it.

    I'll know better next time!

    Much love to you,

  3. Hi Laurel another important and interesting post. I meant to comment earlier but by the time I'd followed your links and reposted I ran out of time to come back and thank you. So a belated thank you.
    I read a post on Camp other blog recently who was saying much the same. How important it is to argue with the science rather than rant and rave. Having said that there have been some excellent comments about XMRV over recent months that I have read through XMRV Global Facebook, times are definitely changing and people are being made more aware.

  4. I sit here and read as a Dad of a sufferer of this hideous and unbearable disease and try to deliberate how all you beautiful people can on a daily basis be so positive ! From age 8 until her present age of 31 years my daughter has suffered ! Always from the symptom's as you all have but the also from the "buffoons" who have disregarded this atrocity for so long. So in order to thank the caring few Professionals who now fully understand your plight let us as one family unite. Ensure that the message of "Confirmation" is passed to your Dad your Mum your Sister your Brother your Grandma your Grandpa your Aunty your Uncle your cousins and all of your so called past friend's so that they (Who in the past may not have ) fully understand. Then we can all join in the fight as one massive army so eventually you will all have victory.

  5. i loved these videos!
    take care.
    cheryl x

  6. thank you, thank you laurel! i dont honestly know if anger is the right or wrong way...but i know its the WRONG way for ME! and i REFUSE to use it to advocate...and i NEVER will! i will continue to search for the inherent goodness and compassion of much as i possibly can. with 40 yrs of severe ME/cfs behind me...and what may seem to be a rather dismal future (a newly dxd husband at the age of 60!) ahead of me - i suppose i have as much to be angry about as any patient! but to live in anger means to "lose" my soul...MY compassion! a far worse fate, imo, than the disease we have. btw, the small act of connecting to (of "seeing") - his benefactor, by gently touching her shoes...brought ME to tears.

  7. Thank you for your beautiful and wise post Laurel. I have been thinking about this a lot lately and I very much concur with you that sometimes what puts people off is anger. I think it can often put people on the defensive and make them disconnect from our situation, which is the opposite of what we want to achieve.

    I do absolutely agree with you of course that we have every right to feel very very angry at how we have been treated and neglected and it is important that this is acknowledged and not denied.

    Also I dont think that taking a less "angry" approach means that we have compromise our position at all. We can still be very clear and very assertive about what what we want and to push for things to change. But I also agree with you and feel that it is very important how we put our case across to others and to think about the most productive ways to achieve our goals, and getting people to emotionally connect to our situation I think is one of those ways. It might not always be easy to do for sure, given the stress we are all under, and it may not always be successful, but nevertheless it is absolutely worthwhile.

    Thanks again for your wonderful blog!

  8. Thank you for your kind comments!

    I should admit that I myself have been known to send an angry and emotional email from time to time. It can be hard not to with all the damaging politics and blatant injustices being played out at the expense of people's lives. It can be beyond infuriating.

    But I don't know that any of those emails were helpful, either to me or to the cause. I know I never received responses from them.

    I think anger has its place and can certainly be effective. But I worry when we start making personal attacks about people and posting them publicly. I worry we will alienate researchers and doctors who might otherwise be interested in helping.

    Froufox - I agree with everything you said. Perhaps being assertive is the better word. I definitely don't think we should use our inside voices -- but I think we can be loud and firm without actually alienating others in the process.

    I really think most people unaffected by this illness have absolutely no clue about its reality, nor how devastatingly brutal it is. When they finally do see it, they are often quite humbled and even shocked.

    Anyway, the video along with my recent exchange with the reporter just got me thinking as to how we can better show the reality of this illness and turn people around to the truth.

    Thanks again for the comments!

  9. It was actually learning about Lynn's story that got me interested in ME. I was aware of something called severe ME before, because I had seen Lynn on TV in 1993 (when she was 15, and 18 months or so into her illness) and also had come across a young woman while out on a delivery run who said she could not come downstairs to collect a parcel because she had severe ME, and spent most of her time in a dark bedroom (and if my memory serves me correctly, she lives very near me). However, I was quite unaware that there were people living in such conditions for years or even decades, from childhood. It was dreadfully sad, especially when I learned that she was the same person I'd seen in 1993 (the documentary did not really convey how ill and how disabled she was) and what had led to her deciding to kill herself. I could not let it go and that's why I got involved in ME activism.

  10. Thank you, Indigo Jo. I didn't know your story on how you got involved in ME/CFS activism. Thanks for sharing it - I found it very interesting.

    Lynn's story is definitely an incredibly heart-wrenching one. Once you learn of it, it's hard not to be struck by what you see and hear. I think if her story was more well-known outside of the ME/CFS community, we would have many more people finally grasp what this illness can really entail, and thus want to help.

    I am always so grateful when a healthy person takes on our cause and advocates for us, especially given how we are often to sick to do so on our own. Thank you for that.

  11. Laurel, thank you for posting your wise and touching blogs on the web. Isn't it great that I can read this, while lying on my bed in Holland. After making my breakfast and reading 3 pages of the newspaper I went upstairs again, needed to lie down. Feeling somewhat lonely and desperate, another day to spend feeling miserable and sick. Then I read your blog and it is so good to know we're not alone. I can sense your strenght, the strenght in all of us. The strenght and willingness to continue our lives, to stay positive, to stay mild, to make the best out of it, to keep dreaming. Through your blog and that inspiring little video of the blind man, I realize once again, that we all can have an impact, through the smallest gestures or words.

    I'll keep following your stories. I like the birds too :-). Keep going on Laurel. I wish you all the best!


  12. Laurel - Sorry it took me so long to respond. Great post.

    I so agree with you. Sometimes it is hard to keep our anger under control so we can say what needs to be said. I think that is why I choose to write versus speaking verbally most of the time. Writing gives me time to reconsider my words and ponder on what I actually want to say.

    Great post as usual.

    Sending you much love and hugs. Hope you are feeling a little better today.

  13. Hey Laurel, Your post is clear and compassionate, as always. I am delighted the Globe journalist responded positively (have not read yet). Still, I feel anger is useful, as long as harnessed properly. It is almost impossible not to feel anger at the way ME patients have been treated and continue to be treated, and we almost have a duty to clarify the suffering, when we are misconstrued or misrepresented. We have to educate continuously that ME is not chronic fatigue, and not self-limiting post viral fatigue, teach that it is distinct from all these nebulous fatiguing conditions that have elbowed their way in. Again, I salute your courage for dealing with unrelenting severe ME, you deserve a big shiny medal. Wishing you a peaceful day, my dear.

  14. Laurel the video you shared very much depicts how I see things. I do think that the way we use words can make so much difference!!

    I think, as others here have said, that we have so much right to be angry over the way we've been treated, for so long now. It's human and it's completely understandable that we would be hurt and angry. But anger can be used for good or for bad, and it can be expressed well, or simply aggressively. I think you're right that firmness is probably the right way of going about things - particularly when used in conjunction with evoking people's compassion and trying to gain their understanding. Aggression on the other hand just tends to alienate people, or worse!

    I'm so glad you got such a good response from Deborah Kotz!! It makes a real change to see a journalist writing something so thoughtful and compassionate. Let's hope she continues along that vein and advocates for us in the coming years!

    How are you doing Laurel? I think of you often. :)

  15. Thanks for all the insightful comments. I've enjoyed reading and thinking about them. It's given me a lot to reflect on.

    Susannah -- I've been having a rough time the last few weeks, but am hanging in there. Thanks for asking! :)