On October 10, 2014 Lyme patients, friends and family members gathered in Philadephia to do a candlelight vigil to honor those we have lost to Lyme and other tick borne illnesses. The next night on Octobber 11, 2014 they gathered again in front of the convention center in downtown Philadephia to protest against the Infectious Disease Society of America (IDSA) to ask that they take a look into the science showing that Lyme diease is a persistant infection and asking them to change their guidelines. To learn more of The Mayday’s Project’s Mission Read Here.
We wanted to ask them some questions to find out what it means to each person personally to experience going to a protest, fighting for a cause that is so close to our hearts, and being able to interact with our online friends face to face. Some questions and answers will be serious, some sad, some will anger you, and some will make you smile.
If you attended and would like to add your pictures and answer a question just contact us and we will get a hold of you! Contact us Here.
Questions & Pictures
Sue Morbelli Bell
Lisa: I know you lost your sister because of Lyme disease. Im really sorry for that and cant imagine how much that would hurt. How did it feel to stand right where the very drs are, that control the guidelines to how Lyme patients get treated? Did you have a chance to tell Chris’s story to any of them?
Sue Morbelli Bell: ” I can tell you that I did meet some wonderful people there today. Many asked for Lisa and I to tell Chrissy’s story because of our shirts. I met a guy from Harrisburg’s Lyme group (30min from me) that I will get in touch with. Many people I talked with were surprised that I was there and didn’t have Lyme and they too thanked me for being that and I told them the same thing I told you. I was there for Chrissy. The hurt of missing Chrissy is there every day, it doesn’t go away. Some days are worse than others. To be where the drs were that made the rules of Lyme treatment and knowing that they didn’t care to talk to me was heart wrenching. You could tell they didn’t care or were in a hurry. I spoke to about three of them for a minute and had Mayday business cards that I gave them and asked them to please go to the site to learn more about Lyme. I did stand in the window and point to my shirt to a few that I could make eye contact with, most just looked down and walked away, so I did not have a chance to tell Chrissy’s story to a doctor.”
Lisa: Rick, can you tell me what made you attend the Mayday Philadelphia Protest?
Rick Urbanowski: “I have to admit my reasons are selfish. Five months ago my wife Chris committed suicide. The relentless battle against lyme disease became too much for her. She just couldn’t take it anymore. She had lyme for 20 years, and about a year and a half ago became antibiotic resistant. Doctors ran out of answers and Chris ran out of hope. I’m trying to deal with Chris’s death. Going to these protests are helping me mourn the loss of my wife that I loved more than anything.”
Lisa Hilton: Rick, that is anything but selfish. Chrissy is looking down on you right now watching all that you are doing for her! In fact I bet she’s right next to you, cheering you on.
Here are some of Rick’s pictures
Lisa Hilton: Julie, can you tell us where you are coming from, (what state) what was the most memorable thing that you witnessed at this protest?
Julie: “Drove from NJ Most memorable; The largest number of ID physicians who engaged in a dialogue were from Europe. Scariest moment; A physician who said he didn’t need to know about our Lyme; as he was a Pediatrician. (OMG scary)!”
Pictures from Julie
Rory Lyme Hubert Kahn
Lisa: I know how awesome it is to be at a protest and be able to fight for our cause, but how does it feel to actually meet our friends face to face and give them a real hug? How does it feel to feel part of a community that understands what you are going through and then to finally actually get to meet them while coming together to fight for such a cause?
Rory: Barney and I were just discussing that very thing. I find the most important part of the rallies/protests (besides trying to get the truth out to thick headed Doctors and Politicians) is the validation I receive from my Lyme brothers and sisters. The gentle hug from someone who truly knows what you are going through is invaluable. My sister Bunny came along for support and to experience a protest for the first time. She came away from it with a new compassion for me and my Lymee friends and a better understanding of this horrific disease.
At the end of the protest today, Josh spoke firmly about the desperate need for many more people to attend these events. He said that the people and organizations that are trying to shut us down laugh at us when our protest only involves 100 people (the head count we took today). Whenever I see a posting where a fellow Lymee is suffering and feeling alone and hopeless, I’ve gotten into a habit of leaving a message sending healing love and prayers for their well being. Today, post protest, I decided that from now on, when I leave those comments of support and compassion, I will finish my statement by suggesting that the person visit the mayday project site …. first, to educate themselves.
.. second, to see that there are hundreds of thousands out there who are feeling the same way they are and are willing to offer support and compassion, and now
…thirdly, to suggest that they reach out and involve themselves in the events of the mayday project, attending the rallies and protests whenever possible and even go as far as to volunteer to help. I have found that all these things empower me, make me feel like I am not alone, make me feel like I am a part of something much bigger than myself, and put me in a position of receiving as well as offering compassion and support while giving the same. Hopefully those comments will get more people to attend our events (thereby increasing the effectiveness of our gatherings) and empower our peers in Lyme to do something that will help themselves and many others.
Lisa: Did you see any public interest at all at this protest? Did anyone come up and ask what this protest was about or stop and read the signs?
Bambi: “There was not a whole lot of walking traffic, mainly they were going in or out of the building. Actually, when I think about it, with each one of these IDSA rallies, we’re actually reaching more and more. I’ve noticed a definite increase in interest. The amount of members willling to stop and listen is increasing.”
Lisa: Why do you think its important for Lyme patients to protest? Why did you feel like you should be there to support the Mayday Projects efforts?
Janet: “I feel its important for us to attend and participate as much as possible in any event because we are our only voice. The medical community seems to be against us as well as the IDSA and CDC, etc and we have to do this in order to be heard. If we don’t, who will?? Nothing will change. Most of us have learned the hard way that we have to be our own advocates. I felt I should have been at this protest because it was my time…. Ive wanted to attend the others but have never been well enough to travel. Im from NJ so the protest in Philly was perfect for me. I am a warrior in this fight and I should be there. I am part of the solution for a big problem. This is my health along with millions of others out there. I have to do this for my children or at least try and make a change as best as I can. If going to the protest is the least I can do, so be it.”
Lisa: Deb, what state did you come from to get to the protest? How hard was it for you, as a Lyme patient, to make it to this protest? Tell us a little about how you have to prepare to get somewehre and then was it worth it to meet your online friends?
Deb: “I live in New Jersey. It is very difficult for me since I do not drive and am dependent on another to get me there. My husband works 6 days a week to support us; it isn’t easy to get time off or to financially afford the further distant protests. My son brought me to the Philly protest and made it possible for me to be there.
It takes quite a bit of energy for me to prepare to go out. I usually feel nauseous and sick by the time I am done getting ready, but I believe I need to try. It all takes much effort, but it is most definitely worth it. I am glad to show support where I can. It was awesome meeting everyone! My hope is that someday we will be meeting under different circumstances. Where we will all be able to connect in triumph of better healthcare and acknowledgement of Tick Borne Diseases.”
Lisa: Hi Nancie, I know you are the one who came up with the idea for the Lyme Quilt. I also know you have put a ton of work into it. How does it feel to see it being displayed at these Lyme Rallies. How do the Lyme patients react to it? And how does the public? Do they stop and ask what it stands for?
Nancie: Actually a Lyme patient in Frederick had the idea, when she became sick with cancer I asked her if she would mind if I tried to make it happen. It’s amazing to see it displayed. The colors really pop and you can’t help but notice it. The green squares are for those who have passed. Seeing their names is a reminder of why we do these events. It’s funny there are some patients who do not realize the quilt exists but when they see it I think they get excited to be part of something tangible. I’m excited when each square comes in, it’s a story, a battle that I get to bring to reality.. It was displayed at The Great Frederick Fair. When I stopped by to see it there were two ladies looking at it. I proceeded to tell the that each square was a person , and what Lyme does. One of the ladies said her daughter was just diagnosed with Lupus. It was neat to see that the quilt prompted conversation about awareness. The quilt won a first prize blue ribbon in the judging! I want this quilt to grow and for each section it becomes truth that Lyme is a bigger issue. I have 200 squares in my possession ready to be sewn into another quilt to be added. This should be happening within the next few months.