Activist Love

posted in: chronic illness | 4

I’m taking part in WEGO Health’s Health Activist Writer’s Month Challenge

Day 14 #HAWMC – Thank a few of your fellow Health Activists for what they have done. Call them out by name or twitter handle. Share your love.

After Vincent #5 © 2012 Jane Waterman
After Vincent #5 © 2012 Jane Waterman

I concur with many of my fellow health activists, and as I did once before, would like to thank everyone who ever risked criticism or condemnation by being real about a health condition in the name of awareness. To me, activism is as much about raising awareness through words and images as it is about action. Sometimes that means being vulnerable and risking exposure of more guarded areas of our personal lives to bring about understanding of specific challenges.

Here’s a few people I’d like to name specifically for their activism in the face of chronic health challenges.

Tara Brach – https://blog.tarabrach.com – A Buddhist meditation teacher living with chronic pain from a genetic disorder. Through her work, Tara has taught me much about self-compassion and finding happiness in a life filled with challenges. Through her books and incredible (free) talks, Tara helped me to combat the oft-held belief that “something is wrong with me”.

Toni Bernhard – https://www.tonibernhard.com – A former law professor who became ill with a mysterious chronic fatigue-like syndrome in 2001. Toni is a gentle and unassuming soul, who shares techniques based in Buddhist practises on how to deal with the pain and disappointments of a chronically ill life through her books and her Facebook page. Toni stresses that you do not have to be Buddhist or change your religious beliefs to practise these techniques.

Michael – https://more-than-pain.blogspot.ca – Michael has been living with chronic neuropathic pain since 2004. He is a skilled and sensitive writer and photographer and a lovely human being. I am blessed to call him friend. His love for our planet, our creatures (including the foxes!) and his fellow man is bounded only by the challenges of his life. He writes about his search for peace and refuge from the pain of chronic illness. You must also visit his photography website to see the splendour of the world captured by Michael’s camera!

Barbara Storey – https://www.storeylines.net – Barbara is a great human being who lives a very challenging life after undiagnosed ulcerative colitis led to the replacement of her colon with an ileostomy. Barbara shares some of her amazing life on her blog, including a stint as a nun, and a trip to Austria that went horribly wrong. She is also a Harry Potter and Hugh Jackman fan. What’s not to love?

Chris Dean – https://www.pixiecd.com – Chris is a force of nature. She is also an awesome person. After a short time, you will feel like you have been Chris’ friend for life – she is that ready to leap in with her heart and soul. She has a wicked sense of humour akin to that of the Bloggess, Jenny Lawson. She lives with Unspecified Mixed Connective Tissue Disease (that’s the simple version) and fibromyalgia, and other challenges such as you can only understand if you read her posts, including those issued from the porcelain throne room. Chris is the real deal. She can have you laughing hysterically one moment, and then confronted with the limitations of a chronically ill life the next. She almost makes being ill fun. Almost!

Julia – https://reasonablywell-julia.blogspot.ca – Julia is a retired RN, and lives with Sjogren’s syndrome. She is incredibly knowledgeable, and an amazing source for well-researched and written posts about the myriad ways that systemic Sjogren’s syndrome affects the body. She has been my go-to source for Sjogren’s information many a time!

Annette – https://yourgoldwatch.blogspot.ca – Despite the long-term challenges of Rheumatoid Arthritis, Annette’s blog is full of wonderfully informative posts about life with RA and Sjogren’s syndrome, including reports on the latest treatments, as well as many of the little things that make life with chronic illness a little more bearable. She always selects wonderful pictures to go along with her posts. I sometimes feel like I’m settling in for storytime: Annette is a marvel at curating information and presenting it in a humorous and entertaining way.

Naomi Woddis – https://www.naomiwoddis.com – Naomi is a warm and wonderful soul, dealing with the confounding and life-shattering fallout of the sudden onset of chronic Lyme disease and other chronic illnesses. Naomi is a poet and photographer. She writes not only about the isolation and alienation of the chronically ill, but the small life-affirming acts that can turn our lives around. In particular I love her photography for capturing these moods, as well as evoking the lives of the people she photographs.

Rebecca Fordyce – https://inmybodyofart.blogspot.ca/ – I don’t know Rebecca personally, and I’m afraid I can’t even remember how I stumbled across her blog, but it’s one that I keep on my list of favourite blogs. Rebecca says on her blog, “I am a 35 year old artist living with the world’s third rarest disease, Adiposis Dolorosa (Dercum’s Disease).” She is not only an artist, but a writer. When I make time to read Rebecca’s posts, I feel like I’m receiving correspondence from a lost part of myself.

There are many others who advocate for health and life itself with challenges most of us can’t comprehend. Some of those special people I think of now as I write this. Some are emerging into the world of health activism, and I’m sure in time I’ll get to share some of their stories with you too. Others are struggling with life, but are no less deserving of recognition. So, I trust those people know that I’m writing about them now, that I see their struggles and their triumphs, that I celebrate with them, and that I’m so glad to be a part of their world!

Many blessings,
Jane

4 Responses

  1. Christina @momof2t1s
    | Reply

    Just one of the people I alluded to in my comment on "Where I Stand" is on this list. She is awesome.

    • Jane Waterman
      | Reply

      Thanks, Christina. I agree about any and all of these folks. :)

  2. aebernhard
    | Reply

    Thank you so much for including me in your post, Jane. I'm honored!

    • Jane Waterman
      | Reply

      The honour is all mine, Toni! I love the chance to introduce others to your work! Many blessings and love, Jane.

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