Wednesday, May 13, 2015

In Memoriam: Lilady

It is with a very, very heavy heart that I write this. I recently learned that a member of our community, known to most as "Lilady", passed away. She was a vocal and fierce advocate for public health and children, especially those with special needs. Her own son suffered physical and intellectual issues due to a rare genetic disorder, ultimately predeceasing her in his 20s. She also helped care for the son of her dear friends, who similarly suffered from multiple medical issues, including profound mental retardation and autistic-like behaviors. Until her death, she visited him every week.

In her youth, she saw first-hand what diseases like polio could do, with the virus taking the life of one of her childhood friends. She also once mentioned how a cousin was left with permanent brain injury due to measles encephalopathy. These early experiences inspired her to pursue a career as a public health nurse. Her years as a licensed registered nurse and epidemiologist gave her particular insight into infectious diseases and how they could best be controlled. Lilady dedicated herself to improving the lives of others.

Lilady has been an active voice online, particularly on the topic of vaccinations. She was often one of the first to respond to anti-vaccine myths on news articles from around the country. I first "met" Lilady over on the blog Respectful Insolence. We eventually corresponded via email, and her passion for science and justice always inspired me. She never shirked from telling the hard truths, even if it meant being perceived as gruff or "mean". And it was amazing to see her in action across the web. Whenever a news story cropped up on autism or vaccines, just as surely as anti-vaccine activists would swoop in to fill the comments with myths and nonsense, you could be sure that Lilady would be there, too, to counter them with science and fact.

She has been a great friend to many of us, offering support and comfort in our own times of need. I am honored to have known her, and my one regret is that I never had the opportunity to meet her in person. My thoughts go out to her family and friends.

I invite my readers to share their own memories of Lilady in the comments in celebration of her life.

Other tribute posts around the 'net:
Autismum - Goodbye, Lilady RN
Just the Vax - In Remembrance of Lilady
Left Brain Right Brain - Lilady: goodbye, old friend
Medium.com (@EpiRen) - The People You Thought Were Immortal
Respectful Insolence - In Memoriam: lilady
Skeptical Raptor - Lilady RN – A Memory of a Passionate Vaccine Supporter

16 comments:

  1. I will always admire her courage and intellect. She was an inspiration to me, and I'm sure too many others as well.

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  2. Goodness, how sad. I have no idea who she is in real life but I read her posts fondly for years. May she rest in peace.

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  3. This is the saddest news. Lilady was a good friend to me and we spent a few silly times chatting on the phone. We talked about our boys so different but so similar. My heart is in pieces. Love and deepest sympathies to her family from us here in Wales. I will never forget you, my friend.

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  4. Lilady was a lovely and active public health advocate. I had the privilege of speaking with her on the phone thanks to Autismum introducing us. She told me the li in her name was for Long Island. I always had read it as "lil lady" and she thought that was funny. I also liked seeing her in action and commenting and she did her part in supporting and speaking up for the pro vaccine community. My deep sympathies to her family.

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  5. A tribute at Respectful Insolence:

    http://scienceblogs.com/insolence/2015/05/13/in-memoriam-lilady/

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  6. She was a great support as I started going through the process of getting services for my son. She understood what it meant to have a child with several medical issues (though my son has much less than her son).

    I mostly remember her pointing me to a book about Willowbrook, and the advocacy championed by friends of hers, plus she was part of their struggle. I will remember every time I advocate for my son, like when I drop off an assessment to the office of his vocational case worker tomorrow. And when I encourage my son to advocate for himself.

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  7. I have many fond memories of Lilady, but I want to emphasize her love and affection for her late son, and her "other son". She was a champion for the dignity of the disabled.

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  8. Thank you for honoring her work, Todd. She was a valued member of our community, and although I never knew her real name, she touched my life in the real world. Best wishes to her family and friends.

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  9. Lilady was a wonderful fighter for science, with a style all her own. Her knowledge was vast, and I know I learned a lot from her. Her persistence, her directness, and her courage are an inspiration.

    She was also a devoted, powerful person. I feel honored to have known her, and only wish I could know her for longer.

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  10. When Lilady landed on a thread you could hear the bugles of the cavalry. You knew everything was going to be okay.

    Vale. You will be missed.

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  11. As everyone else has said, she is going to be so missed. I have no words for how much I admired her. She was an inspiration -- clear-spoken, level-headed, knowledgable and indefagitable. The world was so much better for her being in it. It is so much the poorer now.

    My thoughts are with her family.

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  12. I never knew her real name, but we had a few exchanges as I (living in the NY metro area) identified what the li meant. She will be greatly missed as an advocate for children.

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  13. Todd, I hope you have a way of communicating with Lilady's family to share these tributes with them.

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  14. Thank you so much Todd for saying what I just don't have the words for at a time like this. I hope her family can see the reach and affect that Lilady had on so many people. There are no words for this loss.

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  15. I was over at RI a few minutes ago.
    Writing of lilady, I actually was crying over the loss of her.
    She was one of the very few online friends I honestly wanted to meet and become a friend of.
    Notable there is, while filling out an online form site to renew a security clearance, I was at a loss to find a third friend who knew me for seven years.
    That many of my friends died in combat or due to risky behavior when redeployed home.
    That brought me up with a shock. I had stopped making close personal friends because of the attrition.
    I'll address that later.

    I'll say this. I had checked my personal e-mail on a non-attributable VM, which I checked occasionally, for usual security operations center business and of course, check on personal e-mail.
    While it is permitted to use one's own workstation to do so in this environment, I do not, I'll use the VM. I've witnessed and even experienced successful spear phishing attacks that made life a nightmare.
    Rene gently informed me on the 12th. Rene is aka EpiRen.
    Cool guy, he's also on the short list for personal friends.

    Look, it's late for me. I work a rather odd shift, which will likely become more odder, due to central location time and my own new timezone time, courtesy of a company relocation plan.

    Besides, I don't want to cry again.
    Connie was a cool, world treasure.
    The sun will forever feel colder to me for her loss.

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    Replies
    1. Thank you for commenting, Wzrd1. As I was writing my post, I was doing okay, but as soon as I hit publish, it all became real. I found myself crying for this woman that I never knew outside of the internet. She made such an impact on everyone around her.

      I'm glad Ren shared the news with you. I count him among my good friends, as well.

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