LDA President’s Blog– Beloved Advocate Lucy Barnes aka Tincup: You are Missed

Lucy BarnesWe miss you, TC
Over the decades, I have been fortunate to work with some of the finest people I have ever known. These are the people who have been fighting against influential individuals preventing the diagnosis and treatment of thousands of Lyme patients—instead should be working for those who have helped provide or enable treatment.

One of the humblest, bravest, brightest persons I have known—and a dear friend—is Tincup, aka, Lucy Barnes. I have had the greatest respect for TC, (how I knew her best). She was very grass roots and did not seek to have a large group, but worked mostly on her own, sometimes partnering with other Lyme groups or advocates across the country. She was no nonsense and worked day and night, when sick or less sick, to investigate all avenues to stop the perpetrators who deny chronic Lyme disease. We often talked well into the night to hash out what priorities needed to be addressed and how. She had a way of talking you into doing something you really may not have wanted to do. As Teddy Roosevelt said, “speak softly but carry a big stick; you will go far.” She spoke softly but you knew the stick was back there somewhere…

She was always optimistic, brilliant, and a real problem solver. Patients contacted her to help find doctors who would treat them, to figure out how to get payment from insurers for their treatment, and to find out where to go for help if they had no insurance. She worked hard with other Lyme groups to shape public policy, which has not been favorable to treatment for Lyme patients. Despite that, she still worked in good faith with the government to try to change minds. Through that, she was always pleasant and had a sense of humor.

I remember when I sat on the HHS Tick-Borne Disease Working Group in DC. She signed up as a member of the public to speak virtually at one of the meetings. She presented to us in her sincere, down-to- earth, manner the problems patients were facing, and suddenly, there was a noisy interruption and roosters were loudly crowing. No one knew quite what was happening, and TC made a joke about the roosters outside her home joining in the meeting to have their voices heard about the injustices of Lyme. She was not flustered at all, and later, she sent an apology email to government members, because that was her nature. But she heard back from the officials present at the meeting. They said that it made their day. When I hear about roosters or hear them crowing, I always think about TC and the Lyme rooster-advocates.

Despite sometimes daunting opposition, TC never backed down. In our many conversations over the years, most of the time, we were in agreement as to how to proceed with a Lyme issue. If we didn’t agree, we worked it out and either chose separate paths for that issue or worked together in the long run. On Lyme issues in Maryland, where she lived then, she was very knowledgeable. For various reasons she herself did not feel comfortable educating the Maryland legislature on a particular Lyme issue. She felt I would best represent the Lyme patients in that State. She educated me to the government positions in Maryland and persuaded me to travel to Maryland to go before the legislature instead.

She will be sorely missed by her family, friends, Lyme groups, Lyme patients and physicians. A humanitarian extraordinaire who fearlessly confronted the evil faced daily by those with Lyme, she never backed down and always followed through. TC always exhibited compassion and humor to those in need.

Moving forward, I will always try to maintain those attributes in my Lyme work knowing that somewhere, TC is there. I can hear her little laugh now at 2am, then telling me, “get busy, there’s more work to be done and you need to do it!”

 If you would like to send Tincup (Aka Lucy Barne’s) family a note please click here.