In the world of social media, we generally don’t get to know one another very well. Out of the thousands of followers of this blog on Facebook, Twitter, and other outlets, I know only a handful people personally.
Individuals come and go, and sometimes you don’t notice when they come or go. But sometimes, an individual, even if they are anonymous, they make comments or make statements that remain in your memory, so you do notice when they are still around or not.
One such person is lilady RN, one of those anonymous individuals who also had a profound effect on this blog. She always was one of the first people who would comment on anything I wrote. She was positive, and would gently, if not very firmly, stand up to those who pushed an antivaccine agenda on here.
When I first started this website, I had no clue what I was doing. I didn’t have a voice. I’m not a journalist, so I just wrote. And she was one of the first people to post a comment on here. Over the past year, she has commented over 300 times to my articles, but thousands of times on Disqus to hundreds of articles that focused on vaccines, healthcare, and apparently other issues about which she was obviously passionate.
This past weekend, I was running a report about who commented here most, and her name was at the top of the list. Her comments suddenly stopped on April 14, 2015. Not just on my website, but across the internet. I was curious, but people stop commenting for lots of reasons. I guess I imagined she was working for Doctors without Borders or some organization helping people who needed her help.
Today, I found out what happened to her, and the truth was very sad indeed. I saw an article by a fellow blogger, Harpocrates, who wrote this statement about 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.
She was inspiring. And now that I know more about her, about her life and family, I know that her comments here and elsewhere wasn’t out of a desire to be well known as a commenter, but to counter the myths that pushed onto people by those who have some agenda that does not have the best interest of her fellow human beings at the forefront.
She also inspired other bloggers. She used to frequent Orac’s blog and the good people at Science Based Medicine, frequently posting something I wrote that was germane to their comments. Orac’s personal eulogy to lilady was also just published, and made me smile, in the way that we smile when we remember how someone made life a little bit easier, a little bit sunnier:
And it’s true. I’m starting to realize how much she added to the community that has, incredibly enough, formed around this blog. Whenever some new antivaccine troll would show up, spewing the same old antivaccine nonsense as though it were new, as though she had been the first person to think of it, as though scientists hadn’t thought about it many times before and refuted it, lilady would be there, slapping down the nonsense so that I wouldn’t have to.
…I will miss lilady, because no one can do it quite like she did.
For me, the best thing that lilady did was handle the numerous antivaccine trolls that frequent this blog. I have no patience with them, but lilady had just enough patience to snark them into silence. I read through most of her comments here, and I was trying to find the right one, but I couldn’t. There were so many.
But I think found one that perfectly represents lilady RN’s feelings about the antivaccine crowd:
The “feedback loop” is there. Not only do you have a reading comprehension problem, you also seem to have an auditory processing problem.
If, in fact, you have a relative who is a physician, and if, in fact that physician told you she doesn’t report minor events (redness and pain at the injection site, mild/moderate fever, crankiness, etc.), she correctly does not report those reactions.
Get to know the difference between minor reactions and Severe Adverse Events, which physicians are required to report.
I worked as a public health nurse clinician-epidemiologist at a large (1.2 million population catchment area) County Health Department-Division of Communicable Disease Control, where I investigated cases, clusters and outbreaks of vaccine-preventable-diseases. During my tenure there, I administered thousands of vaccines to infants, children and adults and never had a Severe Adverse Event reported to me by a parent or a treating physician. My colleagues (~ 40 doctors and nurses) at the Health Department, during their collective tenures, administered hundreds of thousands vaccines and they never had a Severe Adverse Event reported to them by a parent or a treating physician.
I had contact with every doctor (pediatricians and family practice doctors) who administered vaccines to infants and children in my County, they never reported a Severe Adverse Event for any vaccine.
Cripes, get a life, get an education in basic science and stop perseverating.
Immunology 101, Virology 101, Bacteriology 101 and Epidemiology 101…learn some.
The troll never replied back.
I too regret never meeting her, never chatting with her privately. I just knew she was there, and she did so much for me and this website, I’m not sure I could put together the right words for her.
I am saddened that she is gone. She must have been a hero to her colleagues and a wonderful person to her family and friends. There isn’t much I can say to make anyone feel better, but she did make the world a bit better by righting some wrongs. And what more can we expect from a fellow human being.
Thank you lilady RN. You will be sorely missed.