Wednesday, October 21, 2009

Dave Ryan Apologizes, But That Doesn't Erase the Sting of Disbelief

A few days ago, Dave Ryan finally issued us our due apology for saying people who claim to have fibromyalgia should be shot. It appears on his radio station's website here.
I would like to make a sincere apology to those whom I have offended with what turned out to be very hurtful remarks via my Twitter account last Saturday. I made a thoughtless and mean-spirited tweet about Fibromyalgia that upset many Fibromyalgia sufferers and the people who love them and take care of them. As KDWB listeners are aware, such statements have no place in the caring and sympathetic fabric of KDWB and my show. This very real and painful condition affects the lives of many and I apologize for such a careless and misinformed message.
Dave Ryan

Dave's apology does sound sincere, and though the cynic in me wonders if it was written for him by his station or the company that owns it for him to sign, it is still vindication. It is still a win, it still shows the world that we are not invisible or powerless, that we will not put up with discrimination and marginalization...from public persons. In our day to day lives, however, the story is very different.

Case in point. When I told my mother about what Dave had said, and that thousands of us were outraged and banded together to create a Cause and right the wrong that had been done to us, she said that we must have misinterpreted what he'd said. That's right, my own mother would rather question my judgment than accept a total stranger might say something that was marginalizing. She refused to believe that people with fibromyalgia had be stigmatized, and this very denial was ironically another dismissal. Even after I explained to her exactly how his comments were wrong, she doubted us. She relented (reluctantly, and only by keeping silent) only when I told her that his words were available for everyone with access to a computer to see, and that each of the thousands of people who joined our Cause had seen them for themselves and all interpreted it the same way I did.

At the time, I did not think anything of this episode. I guess because I am so used to her doubting me whenever I get upset about injustice. She has admitted she lives in a bubble, and will not step out of her la-di-da, head-in-the-sand world view even to support her chronically ill, poverty and pain stricken daughter. If ever there was anyone in her life she should feel sympathy for, it's me. But we're stuck in this pattern, and she's stuck in her bubble. The more I try to break it, the more she resists.

I almost didn't write this story because shortly after it occurred to me, I realized I do the same thing to her. I play devil's advocate, point out the flaws in her reasoning, make fun of her for complaining about things in her life that I would feel blessed to have the opportunity to experience, most of them having to do with her material possessions and money, her long-standing insistence she's too busy for her own liking (even though she spends all her time golfing, lunching & dining with friends, gardening and a million other things she loves).

I don't know how many times she's complained to me about her busy life, and how many times I tell her all she has to do is say NO to a couple things a week. I know now that she actually does not like having free time at all, no matter how much she professes to want it. She has been running frantic her whole life and doesn't know what to do with herself when she has spare moments. She ends up falling asleep on the couch - a sure sign that she's running herself exhausted. I have a friend who's a workaholic and does much the same thing. She keeps herself so busy that as soon as she sits down to relax, she falls asleep. Now that is a life choice, and I have no problem with it. But for God's sake don't complain about it! Either make a change, or accept that you've chosen to live this way.

My mother tells me all the time how she plans to read this or that, but just can't find the time. I believe she is literally unable to sit in peace and quiet and listen to a voice that comes from her own self, even if it is speaking someone else's words.

My whole life, my mother has been on one diet after another. Recently she's started denying they are 'diets' but calls them 'lifestyle changes'. But nothing has changed at all - she has always been restricting her foods. I am sick of hearing the same things from her over and over, I am sick of listening to her complain about things and never do anything to change them, I am sick that her mind keeps current the same issues that have occupied it since I was a child. How can I think she is doing anything other than avoiding reality, avoiding change, avoiding the dark that always comes with the light?

For someone who has always been severely self-aware and self-exploratory, someone who has lived most of her life as a fatalist and a pessimist (though now has become a realist and a realistic optimist), it is so taxing and infuriating to sustain a relationship with someone who is so willfully ignorant of herself and everything she doesn't want to see. For someone who lives in the truth of the gray, it is hard to deal with people who are black and white, let alone the ones who deny the existence of black altogether. And when I am with her, it seems like I cannot help but point out her delusions and contradictions, her assumptions and blind spots.

So maybe I deserve to be doubted by her in return. Maybe, but somehow I can't feel that, because I can't stand to let her think her willful ignorance is right. I'm trying to be fair, to be tolerant of differences in belief, to be okay with letting her have her own view of things. But not only is it difficult to be objective with your own mother, it is difficult for me to accept a view that is so very diametrically opposed to my own coming from my own mother. If it resembled my own even slightly I might have a better chance of letting it go, letting her be, not feeling I had to nit-pick and be sarcastic and comment on everything that comes out of her mouth. But what she does goes against everything I hold sacred, everything I am trying to do with my life. I am on a path of becoming more and more self-aware, more mindful of the gray, the subtleties, the complexity and simplicity of existence, and she is determined to remain blind to her grave. I can only surmise she does this because she is afraid of some truth, and constantly running from it, afraid that recognizing that life is not all pleasant and petty will destroy her, make her feel some overwhelming emotion like regret or guilt or shame. Where is the meaning for her in living a shallow existence?

It is my own issue that I can't understand what motivates people to go on under such circumstances, how the surface of life can possibly be enough. She keeps her mind from dwelling on anything with depth, and she rationalizes it by saying it's not pleasant. As if pleasant were the only and entire purpose of life! How can that be? Perhaps my suffering and wallowing in the depths of existence is somehow meant to make up for her refusal to go there, to balance the equation.

It's not unusual for daughters to revert to old dramas with their mothers even when they've overcome such behaviour in the rest of their life. With everyone else, I can feel compassion and spaciousness to some degree. With her, almost all of the time I feel irritable and critical. I can feel no empathy for her complaints. She has created a life of only pleasantry, yet still finds things to complain about! Whereas I have legitimate sufferings - constant physical pain, constant battles with guilt and shame, constant frustrations and obstacles because of my physical and mental illnesses, yet I rarely complain about things as they are. Sure, I'll vent to my friends online when I'm feeling overwhelmed by frustration or exceptionally exhausted or in extraordinary pain. To my mother, I rarely complain - only report. Maybe I'm deluding myself here, maybe I do complain to her but can't see it objectively enough to call it that. But no, any time I try to vent to her she doubts me like she doubted that Dave Ryan's words were hurtful. So it's rare that I do it now, because it's so invalidating and unsatisfying. I vent to her about one thing, then get home and vent to my friends and on my blog about how horrible it felt to be invalidated by her for my venting.

Insight: anger is unacceptable to her. I have known that, been taught that, my whole life. I have been unable to know how to express my anger other than writing - what were those hours and hours I spent daily writing in my journal as a teen about if not anger? These days I am learning from my therapist that anger is not negative - that it is a self's way of signalling it's boundaries have been violated, that it's been hurt. I've known that intellectually for a long while, but just lately have been able to validate and honour my anger for doing its job. But my mother never gets angry, she avoids it at all costs. Even her complaints have no force or assertiveness behind it, and maybe that's why she can't make the changes those complaints call for. She squashes her own anger and is still trying to squash mine, even as I try to welcome it back into my life so I can be healthy. She invalidates my anger at the very same time I am trying to validate and honour it.

When I told her about my anger (and the anger of the others who had been hurt by Dave Ryan's words) she immediately sought reasons why my anger was wrong. She immediately tried to make me give it up. But ever since I learned/realized that forgiveness is not all that it's cracked up to be, that I had every right to be angry about my childhood, that it is healthier to honour that anger than to invalidate it by forcing myself to forgive before I was ready, I have learned not to let go of anger until its time. Until I have been recognized as having had my boundaries violated by the offending party, I will not forgive.

We've been inundated with the idea that forgiveness helps us as much as the forgiven, that forgiveness is the highest virtue of all, that without forgiving your transgressors you cannot possibly be emotionally healthy. Thanks to my therapist and the author Alice Miller, I no longer believe that. I no longer think that 'honor thy parents' under any and all circumstances is a worthy commandment. This is an unpopular view, I know, but that is only because we've been so indoctrinated to accept its opposite as an unquestionable truth of the universe. It was not until I was given permission - by my therapist and myself - to NOT forgive that I made any progress in my emotional recovery.

It could be there is a way to forgive without receiving reparations and validation from the offender, but I don't know of one yet. Dave Ryan's apology, as skeptical as I am about its motivation and sincerity, allowed me to let go of my anger and forgive. I no longer carry that anger with me, I no longer have feelings of hatred for that man. People say foolish things all the time, not realizing how much hurt their words might cause at the time. What matters is that they recognize the significance of what they've done and the damage that has resulted. What matters is that they acknowledge it and apologize. What matters is that they learn from their mistakes.

And this is exactly what I will never get from my mother. Every blindfold she puts on reminds me that she will never recognize, acknowledge and apologize for the full extent of the damage she caused (and continues to cause) me. Every time she laughs off my insistence in pointing out the 'ugly' reality of a situation, waves away my suggestions on how to make changes in her life instead of just complaining, or doubts the justification for any of my anger, she may as well be saying, "I refuse to claim responsibility for how I hurt you while you were growing up, for neglecting you emotionally, for not showing you love, for not encouraging you, showing interest in you, and for all the losses you experienced as a direct result of my failure. I refuse to admit that I directly contributed to your self-hatred, chronic fear, lack of belief in yourself and failure to live up to your exceptional potential. I refuse to acknowledge the role I play in your pain and suffering." With this insight, is it so hard to see why I just cannot stand her attitude of willful ignorance and feel compelled to try to shoot down every instance of it that I witness?

Thursday, October 15, 2009

Update on Fibromyalgia Sufferers Against Dave Ryan

Petition for Fibromyalgia Sufferers Against Dave Ryan: Please sign and support the rights of fibromyalgia sufferers to be treated with dignity and respect!

Fibromyalgia Sufferers Against Dave Ryan
(the Facebook Cause started by Jessica Barto) has gained 1349 members in the two days it's been active! Donations can be made directly from the Cause to the National Fibromyalgia Association, which has been instrumental in helping publicize the incident and gaining us members and supporters. Please help us by showing your support - join the Cause and donate! Contact Dave Ryan & his employers, and let them know that his remarks were wrong and that the millions of people with fibromyalgia deserve an apology.

I have heard that Twitter has issued Dave Ryan a warning, which caused him to take down the tweet that said that people who disembark from airplanes slowly should be shot, but he has not removed the "Also, people who claim to have fibromyalgia" one that followed (a screenshot of his original tweets can be found in the post below. I see this failure to remove his reference to us as another condescending offense. I have also heard that Clear Channel Communications, the owner of the radio station, has been trying to squash this story and also refuses to take responsibility. I can't say for sure this is what is going on, but they are not apologizing or even recognizing that Dave's so-called "joke" was inappropriate and unacceptable.

In two days we have amassed the support of around 1500 people (some of us on Twitter don't have Facebook or have not yet heard the news of the Facebook Cause). With the continued endorsement of the National Fibromyalgia Association, I can only imagine this number will continue to grow. Fibromyalgia sufferers around the globe, as well as their families, continue to be outraged that this kind of marginalization has not yet been answered for.

As I have said before, these unfortunate events have given us an opportunity to draw more attention to our illness and the suffering we experience, not just as a result of our symptoms, but also because of the prevailing attitude of disbelief about the condition, the dismissal of us as hypochondriacs, malingerers or mentally ill. In addition, fibromyalgia is an 'invisible' disability - we suffer daily at the whims of ignorant intolerant people who harass us for "getting in their way" because they don't know we are disabled and cannot move at their pace or do what they expect. They see us as lazy people expecting preferential treatment. Invisible disabilities are like ghosts - they haunt and torment us, but since no one else can see them, they don't believe in them. We are treated with abusive attitudes and denied the rights and support that people with visible disabilities often receive automatically. We are second class citizens, often blamed for being ill even if we are believed to be suffering. We are treated with disdain and ridicule. And we have done nothing wrong.

Nearly everyone with fibromyalgia or other chronic invisible illnesses have lost their previously extremely productive lives. We've lost livelihoods, friends, families, the ability to be self-sufficient, the ability to do most of our favourite things, the ability to take care of our children. We have often lost our entire identities to this illness. We are constantly reminded of our losses and have to cope with the grief on a daily basis. We see our losses reflected in the faces of our loved ones who miss the energetic people we used to be. We suffer immeasurable emotional pain when we cannot play with, pick up or take care of our children. We miss out on so much of life, we struggle to hold onto any joy. We fight our own demons of worthlessness - we do not need people like Dave Ryan adding to our burden by spreading his derogatory, contemptuous views to his thousands of listeners.

These days, it seems nearly everyone knows someone with fibromyalgia or a similar illness - myofascial pain syndrome, chronic fatigue syndrome, lupus, lyme disease, the list goes on. It is likely Dave Ryan already knows people with these conditions. I wonder how it made them feel to hear him dismiss them so carelessly? He has turned millions of suffering individuals into a punchline. Some day someone very close to this man may very well have fibromyalgia, perhaps even Dave himself. I wonder how he will feel about his off-hand remarks then? Those of us with this illness irrevocably turn to each other for understanding and support. Will he be the next one coming to us with his story of grief and pain? Is that what it will take for this man to issue a simple apology for displaying his prejudiced ideas in front of the entire world and using his position in the media to spread this ignorance?

I would not wish this illness on anyone, not even Dave Ryan. I believe that what goes around comes around. I believe that ultimately Dave's actions will hurt him more than it will hurt us - he has opened a door for us to create awareness, the opposite of ignorance. We are turning lemons into lemonade, taking advantage of this opportunity to rid the world of much more suffering than his actions have brought into it. That, I believe, is the real poetic justice.

Tuesday, October 13, 2009

Joke that Fibromyalgia sufferers should be shot is not funny.

On October 10, Dave Ryan, a morning show host for KDWB in Minneapolis, Minnesota, tweeted that people who claim to have fibromyalgia should be shot.

When the large group of fibro sufferers on Twitter caught wind of this, we were outraged. This is exactly the type of stigma and disbelief we have to put up with from doctors, families, friends and nay-sayers all over the world. We re-tweeted his statement and sent it to news media twitter accounts. We posted about it on Facebook, on our statuses and on Dave Ryan's own fan page. Now there is a Facebook Cause: Fibromyalgia Sufferers Against Dave Ryan.

This man is a member of the media, and as such has power to affect the opinions of thousands, if not hundreds of thousands of people. We cannot let this kind of prejudice slide. KDWB is owned by Clear Channel, who's "creed" includes the core value of "respect for the individual". Not only has Dave Ryan disrespected the millions of individuals living with fibromyalgia, he's discredited his employers and his advertisers with his remarks.

Dave's "excuse" is that it was just a joke. He sent the following email to a fibromyalgia sufferer who expressed her outrage:

That was NOT directed at any one person. Wow, if she thought it was, she is sadly mistaken. That was just for the 6,500 people who follow me on Twitter. It was also a joke as should be clear by the previous statement also obviously being a joke. Do you also think that maybe all slow airline passengers should contact me in protest?

I don't expect people who aren't familiar with our show to understand the joke. It would be like you expecting me to understand an inside joke that your family shares.

The frightening thing is how quickly wrong information can be spread carelessly over the internet. As your e-mail does.


Dave's right about one thing, wrong information does spread quickly over the internet. Which was why it was necessary for us to do something about his comment, to let the world know that we will not put up with this marginalization. We are not stupid, we know his comment was a joke. That's not the point. The point is it fosters, encourages, and spreads stigma and prejudiced attitudes towards people who are suffering greatly, regardless of whether he really meant it or not. An "inside joke"? Did Dave's followers who have fibromyalgia appreciate it? No. This was not a hushed remark at a cocktail party. It was posted publicly where anyone with access to a computer could see it.

People with fibromyalgia cannot be compared to airline passengers who walk slowly out of gates. We don't have this illness for 10 minutes every time we step off a plane, we have it every minute of every day of our lives. We are an already marginalized and dismissed group of people. Making a joke like this is akin to making a racial slur. It is not acceptable, especially for someone who has the power of a microphone and thousands of fans listening in. People in the media should be leaders in the fight for worthy causes, not using their power against us.

Dave Ryan is the one who is being careless. We, on the other hand, are carefully using this opportunity to create even more awareness of the illness and the stigma those of us with it face daily.

Please don't let this go. We have been given a chance to bring fibromyalgia into the spotlight, to educate the public, stand up for ourselves and help put an end to stigma. Help us do so:

Write a letter to or call Dave Ryan's boss:
Mick Anselmo KDWB 101.3 FM
1600 Utica Avenue South Suite 400
St. Louis Park, MN

Click for information on how to contact Clear Channel and KDWB-FM
Let Dave's fans know who they are supporting by commenting on his Facebook Page
Tell Dave directly what you think by tweeting him @daveryankdwb


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.