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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How to be Heard in a Room Full of Voices

This forum has grown from just a few members to a couple of thousand in less than a year.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:eek:ffice:eek:ffice" /><o:p></o:p>
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And I know there are many more Guests who visit regularly, or Travelers who pass through (but once) on their Quest for Healing & Knowledge.<o:p></o:p>
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I thank Cort for his Introduction & Never Ending Work, in developing this website to be one of the leading providers of Current News & links to Research on ME/CFS/FM. The Moderators, Administrators & skilled Computer members stand also in line for my thanks. Corts efforts are supported by the Community of Forum members, who make Phoenix Rising a place to call Home. <o:p></o:p>
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I respect & admire some of our Members for their Intelligence & Knowledge.<o:p></o:p>
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I revere some Members for their Wisdom & Insight.<o:p></o:p>
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I take pleasure & joy in reading the posts of Witty Members, and am envious of the Members who have the Gift of the Gab.<o:p></o:p>
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I treasure the simple thoughts of those who are less able, but never the less, just as important.<o:p></o:p>
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I also Envy & Admire those Members with the skills & energy to act as Advocates speaking for the less able is an act to be greatly commended & supported. <o:p></o:p>
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In Advocacy, how do you make yourself Heard in a Room Full of Voices.<o:p></o:p>
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Look to those you Hear on this Forum (when they speak). What makes you remember their words? Watch those whose acts you admire. What did they do that made a difference (in the lives of those who are chronically ill)? <o:p></o:p>
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Look to those Leaders & Individuals in the World who made a difference.<o:p></o:p>
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What has one individual done that will remain in your memory for all your future life? How did they achieve that act & the community (or world) recognition? <o:p></o:p>
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The first Individual that comes to my mind is The Dalai Llama - a man of great Humility & Compassion. How does one person rise above the cruelty & genocide of his people & spread such Forgiveness. His tireless efforts on behalf of world peace and human rights have brought him international recognition. We have all heard of The Dalai Llama.<o:p></o:p>
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Another monk who has emerged from a troubled & war torn country is Thich Nhat Hanh from <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:eek:ffice:smarttags" /><st1:country-region><st1:place>Vietnam</st1:place></st1:country-region> a simple monk having the courage & spirit to spread peace & loving kindness from his home in exile.<o:p></o:p>
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I recently re-read a book called Three Cups of Tea by Greg Mortenson & David Oliver Relin.<o:p></o:p>
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In 1993, the mountaineer Greg Mortenson drifted (lost & starving after becoming separated from his mountaineering group) into a small Pakistani village & was saved from certain death by some villagers. He chose to repay their help & kindness by building their village a school. He then went on, despite great difficulties & danger, to build over 50 schools in the forbidding terrain of <st1:country-region><st1:place>Pakistan</st1:place></st1:country-region> & <st1:country-region><st1:place>Afghanistan</st1:place></st1:country-region>.<o:p></o:p>
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There are many great stories of one person making a difference in the world.<o:p></o:p>
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One needs to find the key to advocacy in Being Heard in a Room Full of Voices. And that key should be in the spirit of positive action and clear & concise speech.<o:p></o:p>
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Comments

jace
I guess what makes an advocate great is many things, in different permutations but the underlying quality required in all those I can think of is altruism.
Unfailingly doing what you perceive to be the right thing to the greatest good without regard for personal safety, gain or aggrandizement.

There are millions of anonymous people working on what they see as their duty, effecting larger or smaller circles, and don't they make a difference to the world. Never mind butterfly wings in the rainforest.

As I get older I am more certain that what we do with our lives matters, and changes the world, which is more complex than I ever could have believed in my youth.

I vote Tim Berners-Lee, Professor Hooper and Cort ;)
 
vdt33
Thanks for your wisdom, Victoria. I hear you! I don't know who Tim Berners-Lee is, but I agree that Professor Hooper and Cort are great advocates. I send them my prayers and good wishes in gratitude.

vdt
 
jackie
Once again...YOU have written something I wanted to read---and RE-read!

I have to say...I often find myself thinking of the posts YOU'VE written (I almost feel I know you) - your love of art and fashion (that has apparently dimmed a bit by the ravages of this disease), your love of gardening and your little patio (and your annoyance for the marauders - both human and animal that threaten it!), your love for your little extended family and the "farm" in the country, your love of neatness and order, (that many of us envy and would GLADLY pay your plane fare to have you come and help us "get it"!)....in the somewhat "uncertain" life you are leading!

Your love of a fresh, healthy diet and your b-12 shots and the supplements that you try to afford (doing a juggleing act with other pressing expenses, I'm sure!). Your love of the NEW BED!!! (and a need for respite from the pain that plagues you late at night) and the philosophies that you hold dear..such as letting go of negative feelings and having as good an attitude as possible, to help you in your quest for healing - under extraordinary circumstances (on your own - responsible for yourself - with little help from others - requires great bravery on your part!)

I could go on and on...as I've listened to what you had to say...(and the WAY you've offered up your thoughts). They will stay in my memory - and I'm sure many others, too! That must be a good feeling to have.

So - you see, vickie....by talking to us and sharing little bits of your life (the life of a fighter with this disease)...staying steady and clear and concise (giving us reason to trust what you have to say)....you have earned the right to call yourself an "Advocate" and your voice is one that IS being heard! (right up there with The Dalai!)
jackie
 
Victoria
Thankyou for those lovely words, Jackie. They bought tears to my eyes - I am really touched.

I genuinely have great admiration for so many members on this board, but I didn't realize how many members read MY words.

Despite constant pain, I consider myself very lucky & blessed in this life.

But it took reading members stories on this Forum to have a true appreciation of how wonderful a life I lived in my youth.

I have had some amazing experiences & travels to look back on.

If members have enjoyed the snippets from my current daily life, then at least I can feel I've made a difference in my own small way.
 
J
This is lovely, Victoria. I also enjoy your posts and (especially) your jokes. Thank you.
 

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