Home » In Memoria

Share Memories of Barbara Wilkie

28 July 2011 97,411 views 14 Comments

In honor of our past president and dear friend, Barbara Wilkie (1938-2011), EHN is hosting a memorial service, August 7, 2011 in Berkeley, California. For more details, please CLICK HERE.

A brief history of Barb

Born July 18, 1938.  Grew up on the southside of St. Louis.
1951, moved to the Arcadia Valley.
June 1957, married Bill Wilkie.
Mid-July 2005, diagnosed with stage 4 (later stage 5) kidney disease (out of the blue at age 67; no symptoms).

“Something I’ve found very interesting is that the list of symptoms for kidney failure
is curiously close to my symptoms for chemical injury and for fragrance and
pesticide products poisonings. While I remain asymptomatic for kidney failure symptoms,
I do suffer these very same symptoms when poisoned by commonly used consumer
products containing petrochemically derived fragrances, flavors, pesticides, drugs, etc.” (July 2005)

2007, Bill diagnosed with prostrate cancer.
June 2010, Bill passes away from prostrate cancer.
Died May 31, 2011 at home in Berkeley, CA.


Barb in her own words

Wilkie Wages War on Kidney Disease (aka Renal Disease or Failure)
The “Low Sodium, Low Potassium, Low Phosphorus Grocery List” (Barb revises the Nephrologists’ diet suggestions)
Links for Kidney Disease (may be out of date)

For Wilkie Wages War, Barb’s writings, please CLICK HERE.

In Memoria

In Memoriam: Barbara Wilkie 1938-2011, by Lynn Lawson

If you have memories of Barb, either personal ones or ones about her activism, please add them in the comments below.  We will share them at her Memorial and with her family.

1 Star2 Stars3 Stars4 Stars5 Stars (No Ratings Yet)


  • Diana Buckland said:

    I have for so many years admired the mighty efforts of you Barb, I have such respect and gratitude of all you did; I also believe I read that you suffered kidney disease and that is why so many globally are trying to stop these ‘criminals in Government’ continuing to pollute our water supplies (and hence all our foods, drinks et al) with the dangerously corrosive and cumulative toxic waste sourced from industries; known as silicofluorides/fluorosilicic acid poisoning our water under the guise of a dental health measure the disgrace of ‘fluoridation’.
    We will keep fighting for you Barb and your light will burn in all of us forever more. God Bless you and yours.
    Love from Australia Diana

    Diane Drayton Buckland
    Independent Chemical Researcher/Activist
    website | profile | email | links | firewater ~ fluoride truth
    MCS-Global Chemical Injury/MCS

  • Marsha Miliman said:

    Barb was one of the most influential and finest people I’ve ever met or known in my life. I only had the pleasure of meeting and socializing with her a few times at Ecology House, after living with low-level MCS for several years, and then having it begin to affect major aspects of my life. I had met a few people through a local MCS support group, but we shared little in common, so when I met Barb, I felt I had met someone who I greatly respected and admired for being fun, intelligent, articulate, warm, and someone who I felt was “normal” except for her illness. She was also a leader and a “fighter” like me, in terms of trying to fight for our access rights and taking actions to truly chance the punishing world we live in as chemical injured people. Meeting her made me feel that I could continue to be my strong self and NOT be beaten down by living with MCS. She openly praised me for the work I was doing, and sympathized when I tried to take legal action against those who had harmed me. How I wish — more than anything — we would have been able to work together to change the world. I know she has, in so many ways, through her work, and I know she changed MY world by showing me that one can continue to share love with others, TRY to keep working, and to keep laughing, debating, communicating, and striving to live the best life possible with a crippling illness that can take your soul away. I never saw her succumb to that force, and that is how she has changed our lives.

    It would be a great honor to meet members of her family, to see and meet those who made her who she was. In the Jewish tradition, family and friends are everything (to a lesser degree when you have MCS), and so feeling as i do about Barb, I feel by extension that her family is now part of mine. I want to know everything about this pivotal woman, and want to carry my feelings about her around for the rest of my life, as an inspiration and cloak myself in warm thoughts about her to comfort me when I feel like I can’t go on. I envision her smile, laugh, strength of commitment, always articulated clearly and beautifully.

    I had wanted to become friends with Barb, at least to come visit her and perhaps socialize with her since I met her 6 or 7 years ago, but her life was full and she didn’t encourage personal friendship, although I know she admired and appreciated me as a woman and MCS sufferer. The last time I called, several months ago, she didn’t have the strength to “entertain,” but invited me to come for 15 minute or so if I was in the area. (I live an hour away in San Jose, so it would have been a special trip to see her.)I never did make it over there, and perhaps I didn’t want to see her in this seriously weakened condition. I wanted so much from her, to soak in her knowledge and experiences, that I was afraid I’d tax her too greatly. So, I missed being with her one last time.

    If her family reads this, just know that in my 62 years of life, having accomplished a great deal in my own life professionally and socially, Barb is one of two people I’ve know who I can honestly say was as fine a human being as there is, and she DID change my life. I will carry her memory with me always, talk about her greatness and humanness to others for the rest of my life. Shalom Barbara. Rest in peace. Marsha Miliman

  • Irene Chin said:

    I only know of Barb mostly through her online posts through the Bay Area related MCS forums and what I’ve read others say about her. She had a huge wealth of good advice and knowledge for those with environmental illness “fighting” at work to obtain and keep reasonable accommodations for their condition. She was very helpful in providing a good number of EHN brochures for me when I had to give a brief talk at work to co-workers about my condition. I also provided them to family, friends, and medical providers to spread MCS awareness.

    Barb was very compassionate and understanding…and I picked that up through just her posts–never having met her in person. I did talk with her once on the phone and she came across in that same sweet way. Thank you Barb for all you did! You’ll be missed!

  • Jessie MacLeod said:

    Barbara’s work and memory will live on through her accomplishments and devotion to helping those who still struggle with the effects of chemical exposure. She was a mentor and friend to so many, even those she never met. Barbara and I corresponded through email after we connected through her posts and my book. She was always positive, supportive and proactive. I truly admired her and will miss our communications. God Bless Barbara and all her family.

  • Barri Boone said:

    Barb Wilke is one of the most inspiring MCSers I have worked with
    through the years. Dealing with disability is very difficult, and
    dealing with one that is not recognized by the medical establish-
    ment, most work places, and most of the community — is a hella
    challenge! And particularly when the medical system is completely

    It takes a great spirit, to accept what you must, and to direct
    energy to changing what can be changed, and ~~ having the wisdom
    to know the difference! Barb had that spirit and inspired many of
    us to take up the challenge. She’ll always be in my heart!

    Barri Boone, MCSer since the early ’90’s

  • Isis Feral said:

    My introduction to Barb was her website. Barri Boone referred me to it when I became disabled as a result of pesticide poisoning. It helped me figure out how to survive as my health was getting progressively worse. I believe that the resources she compiled there saved a lot of lives.

    Barb and I finally met in person during one of the many battles she was engaged in – against pesticide applications in the Oakland Hills in early 2005. By then I was already largely housebound, so I didn’t get to spend much face to face time with her. Most of our interactions were online, but we managed to build a beautiful friendship in spite of the physical obstacles, and I treasured every moment.

    She was a great comfort to many of us in the toxically injured community, always ready to share her experiences and insights, not to mention elaborate and dramatic stories about the stranger moments our illness provides us with. I appreciated her wicked sense of humor. She was a master at comic relief. She once told me a story about wearing her two-can respirator at the airport. She wrote:

    I was having to wear my mask. And, I scared the bejabbers out of a little boy about three years of age. His mother tried to assure him that I was all right. But he wasn’t buying any of that. So I told him I only looked like a fly-face, but that IF I took off my mask, I’d look like another person. So I held my breath and took off my mask and then put it on again so I could breathe, to his chortling, Fly-face, Fly-face, Fly-face. Then his mother had another problem on her hands . . . to train her son NOT to call folks, Fly-face if he saw them with a mask. But, at least he wasn’t scared and crying anymore.

    Something else that became a bit of a joke, were the doctor’s predictions of Barb’s imminent demise. She just kept outliving their deadlines. For years! A few years ago she wrote to me:

    So far, I’m still defying the doctors . . . my last “death sentence” runs out December 2007. Can’t tell you what it does to have a doctor tell you when you are going to die. So far, it’s given me the strength to keep on keeping on, but if I were a different personality, I could see where I’d just curl up and let death overtake me. It’s not just the “dead”line that gets me, but they all push drugs. If I were to take them it would certainly make their predictions come true. There’s something very wrong in all that.

    Barb took her health care into her own hands, and we all got several more years with her.

    But I think my favorite story is the love story Barb lived. I only met Bill once, briefly, but I know that the two of them were pillars of support for one another. I found her stories of their marriage hopeful, inspiring, and exemplary of how loving relationships can survive the greatest obstacles. They scaled every Everest in their path, no matter what awkward mobility devices necessary. Shortly after Bill died, Barb wrote to me these very sad words:

    I’ve a freedom now that is not so freeing after all . . . There’s the freedom of not having to bounce up for water or ice every time Bill calls out, but then the fact that I don’t have to worry about answering Bill’s beck and call is also a new burden. The silence has become deafening!

    I can only imagine the sound of the silence that overwhelmed Barb’s senses, after more than 5 decades of marriage, which included a house full of children, followed by visiting grandchildren.

    Even through the cold distance of cyberspace, Barb’s embraces were warm, genuine, and tender, and she expressed a deep commitment to her community. From a couple of emails I reread over the last few days, here are a few more of Barb’s words, directed to all of us. She said:

    I hope to help others along my journey. However long I have, I’ll try to make good use of the time . . . for my family, myself and of course all of my friends in my EHN world.

    My blessings are many. They begin with all of you and I thank each and everyone of you for your love and your kind concern. Thank YOU!

    Loving wishes and hugs,
    barb wilkie

    Barb did make good use of her time, and while her personal journey is over, I know that her work will continue to help and empower many more.

    I strongly believe that the best way we can honor Barb is to make sure that eventually no one will ever need her help anymore, and to find a way to finally shut down for good the toxic death industries, that manufacture fragrances and flavors, nuclear power and wireless technology, pesticides and bombs.

  • Francesca Lyman said:

    Dear Friends of Barbara Wilkie and Environmental Health Network,

    I just now learned of Barbara’s passing and wanted to convey my deepest sympathies to her family and friends.

    What an amazingly dedicated advocate for environmental health and wellness she was–such an intelligent and perceptive researcher and curator of medical information.

    She was so helpful to me in my work as a reporter on a variety of environmental health topics over the years, when I worked for MSNBC,
    MSN, and writing for a variety of environmental magazines and outlets.

    Sadly,I was just looking for her proper email….to try to be in touch about some recent news when I discovered this website.

    So so sad to hear. She will be sorely missed!

  • Connie Pitts said:

    Barb Wilkie was a phenomenal person. She has made a tremendous contribution, bringing forth awareness to Multiple Chemical Sensitivities (MCS). She was tenacious, brilliant, and a very kind person. Her work will live on. Much of her work is written in my book, Get a Whiff of This. I will always miss her. R.I.P. Barb. Thanks for all your wisdom and heartfelt kindness, and friendship.

    You will never be forgotten.


    Connie Pitts

  • Beth Flaherty said:

    I just found Barbs site and wanted to give her a big hats off to all her hard work and dedication to teach people what toxins are doing to us. I have lost a good portion of my brain and understanding this is a bit difficult so I just wanted to let her know how terribly much I appreciate her smarts and drive to better the world and hopefully protect the injured. Barb I am sure without a doubt, those that knew you firsthand will always cherish the time they had with you 🙂

  • Marjorie Boyer (Jocko) said:

    I love loved and respected Barb. I was working on The Board of Directors of EHN around 1997 as CFO. I went to several events with her to speak to EPA etc. I helped with S.A.I.L and established a membership and doctor referral database. Unfortunately she and most other board members were MAC users. I couldn’t understand why they couldn’t read my files… LOL I had NO clue! She had such incredible patience with me.

    I’m so glad to see EHN is still around. My MCS has almost diminished’ but I’m still spreading the word. God bless us all.

    Feel free to contact me if anyone needs moral support or has a question. I LOVE U BARB!

  • cyndi said:

    Hi Marjorie, thank you so much for your comment. You were before my time but I’m sure others at EHN remember you. Yep, we’re still around, though I think numbers aren’t what they were back then. We’re working on that 🙂 – Cyndi

  • Elizabeth said:

    I met Barb when I was on the commission on disability, city of Berkeley. it was really difficult doing that kind of political work but she supported us every step of the way, when we tried to educate the city and other people with disabilities about EI/MCS. it was sometimes a hostile backlash we received.
    She was very strong, a mentor of sorts, and am amazing, beautiful woman. She tried to get me involved with EHN at the time, but i thought i could do it all myself.
    Now i really count on EHN

  • Elizabeth said:

    Thank you EHN, Thank you Barb, we really miss you!!!

  • Max Ventura said:

    While I didn’t know this was here around the time of barb’s death, she who is remembered lives, and we sure remember you, barb, and cherish not only the memories, but your work for us all.

    barb was one of our early members, and was so glad a next layer of work to stop pesticide use in the East Bay, and all over, was developing right before her eyes. Together, we demanded of the county, unbeknownst to one another at the time, in 2000, a place on the actual agenda of the County Health Subcommittee, and the full Board of Supervisors also, to call for an end to toxic pesticide use by the county. We made incessant calls to the county, barb on behalf of EHN, and me on behalf of Sonoma Pesticide Alert which was morphing into East Bay Pesticide Alert as most of the SPA people were more behind-the-scenes workers, and with my move back to the E. Bay I was working on convening a group in the E. Bay both to address what was happening on the county level, and to continue the statewide organizing SPA and others were doing around the California to stop the Glassy-winged Sharpshooter pesticiding program. Turns out they suggested to her, also, that we could show up for the public slots at regular Bd. of Supes meetings. We each politely and firmly declined, pointing out that this needed to be agendized, and we needed time to do a useful presentation. Finally I guess it was an Environmental Health person who let on that she had been bombarded by both of us enough and she was booking us in. Cool!

    So then we met end of 2000 and with a great little group we did a load of work, much of it very public, and boy, barb, you are missed. It’s some 17 years later but you are like a handful of little pebbles tossed into a pond, each rippling out far and wide, helping so many.

    We love you, barb, and though it’s been some years since you were taken from us, you live on in us.

    Love to you!


Leave a comment!

Add your comment below, or trackback from your own site. You can also subscribe to these comments via RSS.

Be nice. Keep it clean. Stay on topic. No spam.

You can use these tags:
<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

This is a Gravatar-enabled weblog. To get your own globally-recognized-avatar, please register at Gravatar.