Activism and Retiring

Why did I choose activism? Hmmm, I didn't. It chose me. I never set out to become an activist. I simply was pissed at this situation.

I think it started the very week I got diagnosed when the neurologist yelled at me and told me I was manifesting Lyme symptoms from reading about it then turned around and called the doctor and yelled at her for diagnosing me. That very moment something in me changed. I was not going to be a victim of doctors anymore. I yelled right back at the neurologist. I went into his waiting room and informed the patients sitting their that the doctor they were about to see, "sucked." I stood in the parking lot of that clinic and yelled to everyone who would listen how no doctors there cared about their patients. My mom and sister had to physically get me back into the car.

At that moment I was determined to channel my anger into a postiive force for change.

I started looking up good Lyme websites. I started copying any good Lyme information and mailing it to any doctor office I could find an address too, and to HMO adminisators too. I made a "Myspace" Lyme page. Ironically, years later I made a Facebook page that was not supposed to be about Lyme, it was supposed to be a break from Lyme but you see how that turned out. :) That is what I mean by activism chose me. It was my path in the universe I suppose. My purpose. We each have different purposes or paths, not everyone is meant to be an activist just as not everyone is meant to be a doctor, housewife of gardener. We all have our own gigs. This was just mine, at least for this part of the journey.

Here is my activism timeline. It seems really self promoting, but I wrote it out for someone who asked me how I got to become the Worldwide Lyme Protest US coordinator. I just througt, wow, I don't even know, so he told me I should write out what I have done in activism for the last couple years and  I did. So if you're interested here it is. http://lisaschultzhilton.blogspot.com/p/about-me_18.html

But I don't really want to talk about the things I have done, with the help of some very awesome people. I want to talk about what I learned from it all.

I have learned that love is what matters. I never had any foundations, organizatoins or any big powers backing me up. I simply get an idea in my head and act on it. But only if it seems like it will help someone or do something to improve our situation in the Lyme community or the situation for any one individual. If you act out of love, you can't go wrong.

Then again, in the eyes of some people anything you do is going to be wrong, that is another subject I'll touch on shortly.

But to the main point, every little act that we all do influences the other. We are all energy and we are all connected. If you go on Facebook for example and see a happy post of a smiling baby, you all say.. "Awww <3' and your heart is happy. You have spread the happy "love" energy. If you go on and do nothing but complain and bitch about what's happening, then you draw out people's energy and leave them feeling drained.

Now I think there is a place for both things, you have to boast and celebrate the happy things in life and you also need to vent and bitch about the negative things in life. That is just being human. But you have to be realistic and you have to be balanced. You can't do one all the time and not the other, otherwise you are doing the opposite of attracting people to you and your cause. You have to give and you have to recieve is what I have learned with some hard lessons along the way.

When you do something it can't be for selfish vanity reasons. You have to leave ego out of it. There is no point in fighting for credit over a picture you made or an idea you came up with. It doesn't matter. We have to work as a whole within our community. It doens't matter if you are a big well known Lyme foundation. You have to get down in the dirt and talk to Lyme patients. It doesn't matter if you are a Lyme patient and you feel like nobody knows who you are, you have to get out their and let your concerns be known with your loudest voice. We all matter. It doesnt matter if you write articles for a newspaper, if you are a tv producer, a celebrity, or if you are  homebound patient who tweets lyme awareness tweets all day or whatever. It all counts and coming together as a whole is going to be what gets things done. All these big and small actions will all lead up to the truth eventually coming out about why we are all so sick. And each of your voices is going to count.

Now onto the subject of retiring. 
(I won't be disappearing just cutting back)

There are a couple reasons I have decided now is a good time to take a break.

#1.  I feel sick. I'm older and have less energy. Whether because of Lyme or aging or whatever else is wrong with me. It doesn't matter. I just feel weak. I want to take the time I do have left and share it with my family and Paul now. I have spent ten long hard years doing nothing but activism. I literally spend every waking moment online answering Lyme questions, working on Lyme Websites and planning Lyme Awareness events. I have no time dedicated to Paul, my pets, or my family. Literally I have spent every minute of my time trying to help patients with Lyme. For that I am blessed but I also feel drained. It's time to dedicate the time I have left to my family. I have a grandaughter to be a grandma to now afterall. :) <3

#2. New Ideas: There are so many new people with Lyme now. The more I talk to people the more I see all these younger more hip people throwing out these new awareness ideas. Really awesome cool ones that I think could get lots of attention. It's like this....out with the old in with the new.

#3. The negativity of some just leave me drained. I'm not talking about those that talk about symptoms or write me telling me their stories. I love each and everyone of you who reaches out. I am talking about the mudthrowers. The ones who will pick you apart no matter what you do. I swear I could put a heart in my status and there are some people that will find something negative about it.

I have been told again and again for years by many people that to do this work, you have to have a strong back bone or a thick skin. Well after ten years, if I don't have one, I'm not going to develope one. It really takes a toll on me. I can get a hundred nice messages in a day but then one person posts one negative thing and I take it personally and literally can't sleep for nights. I obsess over it, how I could of handled the situation better, if I did something wrong, or is the other person just crazy or mean or having a neuro flare?

The truth is, I don't know why some people are so hurtful but in every community including ours, there is those people. I think I must be empathic and not be able to let these negative comments and criticisms wash off my back. I take them very personally and they make me physically sick.

#4 This last month I have had lots of symptoms flare that hadn't in a long time. I believe stress is bringing out symptoms in me. I love planning events and communicating with so many people on a daily basis but I have to find time to relax too. I feel like Im in constant "go go go" mode and I dont know how to shut it off. I have a hard time saying no to people and Im in over my head with projects, websites, events, and on and on. So I am going to take some time to try to learn to just "be."

#5 I don't really know what I'm fighting for anymore. I'm not sure I know what "Lyme" exactly is. Are we sick from just Lyme or from a combination of things? Are we chronically ill because Lyme does so much damage to our nervous systems and autonomic systems that we are lucky if we ever feel better? Do we want the controversy exposed? I do, but I feel like other activists want to sweep it under the rug. Do Lyme treatments even work? Am I wasting people's money referring them to Lyme drs? I don't see enough people getting better to justify having them spend tens of thousands of dollars on treatments that don't really seem to be working. Yet, these doctors are the only ones in the medical community willing to help, God bless their hearts. I have no doubt they want to help us as much as we want them to help us. But we seem to be at a stand still in the Lyme community. We seem to have a generation of sick people who are not getting better and it's time to admit we just need more research. I don't believe that either sides of the Lyme camp have the answers yet. But again, God bless the ones that admit it's real and are trying their hardest to help the situation. I guess, recognition should be the biggest goal.

#6 I simply can't keep up. I get over 100 messages and emails a day asking me Lyme questions, asking me to moderate groups, asking me to help with fundraisers, or to promote events. New patients are desperate and want answers. I don't really know what to tell them that isn't on my website already. I would love to talk to each person personally but it is very hard. Phone calls make me really sick and trying to keep up with emails is very hard. I don't have enough time to respond to each person anymore and when I don't answer quickly people post on my wall, "Sent you an email." I guess people think I'm either ignoring them or don't care, I don't know but if I don't answer back right away people get upset. I am just too sick for that kind of pressure.

#7 Its time to get back to living now. Even if living just means sitting on my front porch watching the birds. Or holding my grandaughter. Or looking out at the ocean. It's time to "be"in life.

There are some things I will continue to do, I will update my website with any pertinent information, I will continue teleconferences with Jenny Rush and I'll answer emails still when I happen to go online. But I won't be online daily anymore. I want to retire from planning activism events. Next year I'd like everyone to just step up and do their own things. I don't need to help coordinate. I will be happy to post everyone's events on whatislyme.com and www.worldwidelymeassociation.com.I have everything I know on my website whatislyme.com. So anything anyone asks me is on there if you can't get a hold of me or if something is urgent. So I will be limiting how much time I put into the messages and emails to a normal amount. Right now I answer more then 100 messages a day, every single day and I get anxiety trying to keep up,  so I will limit the amount of time I put into it. I will still help Michael Rudy from Lyme Aid with directing him to fundraisers too. These are all things I can do still but just in a more limited way. I will continue to work on the international website Karen Smith and I started too. www.worldwidelymeassociation.com which we will probably be making into an International Non Profit Organization. So all that is behind the scenes stuff that I still do now..and will continue to do, just will do it at a much slower pace.

Instead of referring new Lyme patients to me, please send them these links.

Where to Start? Lyme Info for Newbies
A questions and answers page for new Lyme patients.
http://whatislyme.com/where-to-start-lyme-info-for-newbies/

What is Lyme?
A website with everything I have collected including research, current news, support groups, fundraisers, treaments, symptoms, educational materials, events, and anyting Lyme related.
http://whatislyme.com/

Lyme Questions 
A Facebook group where you can privately post Lyme questions without your family and friends seeing them.
https://www.facebook.com/groups/121919717946352/

24/7 Lyme Hotline
A support group on Facebook run by Lyme patients.
https://www.facebook.com/groups/204870786211189/

Below is pictures of people and moments that were very special to me

Meeting my friend Erin at the Mayday Protest in 2013

Hanging with Chris and Angele at Mayday 2013

Chris and I crash after a long walk around the White House.

Tracy trying to gather energy at the Mayday Protest 2013

At a cook out at the Rainey's house with Aimee, Amy and Gary. All food friends.

Everyone marching down the road around the White House in DC.

At the first Mayday Protest in 2011.

IDSA doctors looking down on us and taking pictures at the Boston Protest.

A sweet and sad moment caught at a Lyme Protest.

Meeting my good friend after becoming friends online, Lisa and Lisa at the Lyme Gala. 

A moment when a child asks a Lyme Leader, if she will ever get better.

An IDSA doctor asks Kim and I if he could take a picture with us. 

A picture I took as Paul as protesting.

My friend, Laurie and her husband at the Boston IDSA protest. She has now been the Arizona Worldwide Lyme Protest leader for two yeares.

My friend Kimberly holds up a "Cure Lyme" sign.

Lyme Fest at Tracy's house.

All the kids playing at Lyme Fest. 

Getting to meet and hang out with Michael and Ilona for the first time after being freinds for a long time online.

My two wonderful daughters coming to support their mama at a Lyme Walk in Illinois.

My mom at the starting line at the Illinois Lyme Walk.

With Josh Cutler at the first Mayday Protest in 2011

With my son and his friend Jazmine at a Lyme Walk in Illinois.

My daughter painting a little girl's face at the Lyme Walk.

My dad has been to almost every Lyme walk that I have been involved with no matter in Illinois or Wisconsin.

My mom and I at the end of a long day after a Lyme walk.

Illinois friends, Lyme Support Network, the crew that put on a Lyme Walk.

Holding up a Lyme Flag for my friend Nancy at a Lyme walk.

My dad winning prizes at the Lyme walk.

Getting a hug from Kimberly the Lyme Support Network Support Leader.

Getting a trophy along with many other awesome Lyme warriors.

Hanging out with my friend Ms Diane at a Lyme walk at the Milwaukee Zoo.

A picture of all of us at the Mayday 2013 Protest. 

My friend Eileen and her girls at the Greenbay, Wi Worldwide Lyme Protest.

All my Wisconsin friends at the Greenbay Worldwide Rally.

Chicago, Illinois Protest 2013

With my daughter at the Worldwide Lyme Protest in Chicago.

My friend Jim who organized the Chicago Worldwide Protest.

My Aunt at the Chicago Lyme Rally.

Hanging out with Deb at the Lyme Gala, the first Lyme event I ever went to. My daughter drove me all the way to NYC. 

A great bunch of Lyme friends hanging out for the firest time in real life. Brittany, Helen, Lisa, Lisa, Chris, Ashley, Deb and Eric.

My buddy Chris.

Got to meet Jordon Sparks as we came out the restaurant we were eating at the night before the gala. She put on a Lyme bracelet that Deb gave her and posed for pictures. 

Deb, me and Tracy, the first time we all met was on this trip for the Lyme gala. Most of us were homebound and hadn't left our house in months.