Day: Saturday, 21 May
Time: 3:00p – 4:00p Pacific Time
Where: the entrance to the Purdy Spit Bridge, on the green in front of the “Welcome to Purdy!”‘sign.
Special addition: we will have petitions for Initiative 1741, Whole Washington‘s effort to get our State Senate to talk about making WA the first state to adopt Single Payer Universal Healthcare. If you’d like to sign this petition please stop by the rally or contact us!
By Lorraine Hart
About two decades ago now, I was in a dangerous whirlpool of my daughter being so sick with Borrelia etc, while doctors insisted it couldn’t be Lyme, despite her symptoms, despite knowledge of the bites and bullseye rashes she had. Even with the small amount of knowledge we had then, we were leaving doctors in the dust. Their response was to close their eyes and write a prescription for any particular symptom she had mentioned. Frustration at the many spins we had taken with doctors who parroted, “But we don’t have Lyme out here,” frustration at not being heard when I tried to tell them of the horrendous days and nights we were having. Some days she writhed on the bed with so much pain, my husband and I had to stand on each side of the bed, making sure she didn’t throw herself off–and then the next day she couldn’t move one muscle in her body, only blink her eyes for yes or no answers to my questions. As a parent, you spin. As an intelligent human being, you spin. Infections from ticks were real, and right in front of me, and yet we were treated as idiots by many, many medical professionals.
One Saturday in May (National Lyme disease Awareness month) I found myself needing to DO something, rather than the talking we’d been doing for years. I grabbed a sign we had made that said, “Lyme Lives Here,” and told my husband and daughter that I was going down to a very busy intersection in Purdy, to protest. There’s a safe, grassy edging on the Northwest corner, where I could hold up my sign and wave to the many cars going through the lights, or turning onto the Key Peninsula. I stood there, danced there, waved there, yelled thank you to hundreds of drivers who honked or waved back as they passed, and thoroughly wore myself out in four hours of my solo Lyme protest. Finally exhausted, I threw my sign on the passenger seat and drove up the hill towards home.
I know I’m not Chicken Little, yelling that the sky is falling. Lyme disease is on the rise all across America, all across the world. I want my community to know about it, learn about ticks and their habitat of moist woods and grasslands, learn the early flu-like symptoms of Lyme, and learn how to keep themselves safer by pulling socks over pants, wearing light-coloured clothing, putting clothing in a hot dryer when you come in, and most importantly, to check one another for ticks that can be tiny in their Spring nymph stage, tiny as a poppyseed, or speck of dust. I wanted to do something to help people learn.
If we wait for others to organize, to make sure we are in a crowd before activism, well, we may never actually act! Who says you need a crowd? All we ever need is ourselves and our own convictions to help our communities. Oh yes, and a sign that could start a conversation. You can stand or sit in front of your own house, all by yourself, and you are a protest, speaking your truth and asking for a conversation. I can tell you from experience of that day, and the nearly twenty Mays since, that it is worth the sore back from standing, worth the sore shoulders and neck from waving to my community. Each year, drivers and passengers in the cars that go by, wave and honk back to let me know they hear me. Each year someone stops and asks for more information.
We can be our own protests, our own parades, our own seeking to reach and teach our communities, asking to be heard. My protest is about the lack of knowledge and care for patients of Borrelia etc. My protest is about the pain of watching my daughter be treated as “less-than” by the medical system. It hurts. My protest is about wanting to save other families from this journey. My daughter joins me now, and my son brings his sons. Sometimes other patients and their families have joined us, and our community now recognizes our stand. All you need is conviction, and the desire for a respectful conversation. Go. Do it. Your soul will be content to stand in loving truth.
This year’s Lyme Awareness Month started out with a bang! Niagara Falls and the Helmsley building both lit up green!
Ticks are found in all countries on all 7 continents (yes even Antarctica, on penguins and other birds who fly to and fro) in the world.
Further you can find “hot spots” in a lot of countries like Germany, the USA, Canada, the UK, Kenya, India, Norway, Romania, Russia, France, Greece, Serbia, Bosnia, Turkey, Ethiopia, Finland, Mozambique, and I’m sure many others I just don’t know about.
Please be careful when you travel, or when you go to and from work. Or when you play in your yard. 75% of Lyme cases in the USA are from tick bites in our own yards. (I’m in the minority of getting infected while out or on vacation.)
The CG and I will be at the Purdy Spit Bridge on 21 May at 3p for the Annual BorreliaEtc Rally!
TickSpotters reported that the first nymph ticks of the year were spotted and reported to them on the third week of April in New Jersey. They could be carrying diseases. Please be careful.
This is a collage of just a few places ticks can be found. Please use proper precaution, tuck your pants into your socks, wear arachnid repellent (ticks are not insects!), when you come inside, throw your clothes in the dryer and get into a shower where you look for ticks on your body. Water will wash unattached ones away. Have someone check the places you can’t see. (Your head, neck, back, etc.)
This time of year they’re so small they go undetected. Nymph ticks start out the size of a period at the end of a sentence. They’ll be size of a poppy seed in May and June. Most people don’t see the ticks.. but feel the effects for years and years. Stay on trails. Be aware. It’s far easier to treat acute infections than letting it fester for weeks, months, or even years.
#Lymediseaseawareness #lymedisease #BorreliaEtc #mayislymeawarenessmonth #blogpost #ticks #tickbornediseases
It’s been a week since the general support group and I can say: it was a big success.
I was feeling over the moon when we ended and that feeling is still carrying me today.
11 people attended from 3 countries: the US, Canada, and the UK. All of us had disabilities to some extent, but what surprised me was how many are also full-time or live-in caregivers. I’m not sure why it keeps on surprising me; I suppose in my own brain it’s such a feat, it takes energy that I don’t have. But I was reminded: I am my own kind of caregiver, just not a live-in one.
Though the CG might disagree with me here, I do not consider myself her caregiver. I’m often taking care of her when she needs it, yes, but she takes care of me daily, whether or not she’s feeling tired, achy, etc… I couldn’t fill that sort of role day and night.
That said, I was made keenly aware of just how much I am contributing to my communities. I don’t feel like the drain I once-upon-a-time thought I was.
The group talked for two and a half hours! Thankfully with the years of experience I have as a support group leader (I started in 2003) I was ready for just about anything to unfold. Usually I will politely interrupt if someone is monopolizing the time, throw a question out to give everyone something to think about, ask people who haven’t had the chance to speak if they want that chance, etc.. but it’s pretty easy to tell when someone needs to talk. Not wants to talk, needs to. This group was so considerate of each other that when someone needed the space to talk, everyone respectfully gave it. Only once did we all talk on top of each other, but it was towards the end and we were all getting tired by that point ~ especially the ones from the UK, it was about 1:30a British Standard Time when we finished!
Though our disabilities vary (I always come from a chronic illness lens where I carry many different kinds of physical and mental disabilities… others come from single physical disability lens, others live and work with mental disabilities, etc) still we all found common ground in our struggles.
The next day during Kim’s show, Burn It Down With Kim Brown so many people thanked me (and at least three people were upset that they missed the first group!) that I couldn’t stop smiling.
We will continue next month, keeping it to the second Monday at 2p Pacific, 5p Eastern, 10p British. Please get in touch if you want to be on the list for next month, or if you’d like your own group for your show’s audience!
The CG and I are working on our introduction video (for people who haven’t been following us for years) but we learned something very important on our first go — we both need microphones. 😂 When we are more than a foot from the phone, its mic no longer picks up our voices clearly. So we are waiting for some parcels to arrive with a lapel mic and an extension cord.
(Written January, 2019)
Papa Matt’s credit card expired and he got a new one recently. It’s bringing to the surface just how much my parents pay for me to live “comfortably” and somewhat close to “normal” even though I’m one of those ‘entitled liberals who lives off the Government’s teet’ – yanno, SSI Disability.
I don’t have much of a work history as my 2 known tick bites happened at 17 years old. I worked in a local bakery for 6 months until I ended up passing out in the back of the store after I threw up so much it tore my esophagus.
So when I applied for disability, of course I had to do the SSI kind. And I got it. I don’t think I should be getting 5 figures each month. I’m not that naïve. But what I don’t get is the expectation that we could take a monthly income of $747 and feel like we are (1) providing for ourselves, (2) helping the community and (3) helping the economy.
The holidays have come and gone. I borrowed money to be able to buy things for my nephews and family. We don’t do huge Christmases. I’m so thankful that we keep the reason for the season simple – Yule is love in our family. And a time to teach our younger generation that there is much to do in this world. So many need help, and when we are privileged in so many ways it’s our duty to turn around and help others.
Gandalf: He’s suffered a defeat, yes, but… behind the walls of Mordor, our enemy is regrouping.
Gimli: Let him stay there. Let him rot! Why should we care?
Gandalf: Because 10,000 Orcs now stand between Frodo and Mount Doom. I’ve sent him to his death.
Aragorn: No. There is still hope for Frodo. He needs time… and safe passage across the plains of Gorgoroth. We can give him that.
Aragorn: Draw out Sauron’s armies. Empty his lands. Then we gather our full strength and march on the Black Gate.
Éomer: We cannot achieve victory through strength of arms.
Aragorn: Not for ourselves. But we can give Frodo his chance if we keep Sauron’s Eye fixed upon us. Keep him blind to all else that moves.
Legolas: A diversion.
Gimli: Certainty of death. Small chance of success.. What are we waiting for?!
-The Last Debate, Return of the King
When I have an episode, emergency, whateverwewannacallit, it takes a while for the medicine to start working, or for the brain to correct itself, or many other ways of getting past said emergency to happen…
So what to do?
I distract myself. I divert my attention from the thing making me miserable. This isn’t easy, but it works. Having a list on hand of the things I enjoy makes it that little bit easier of a choice.
One of my favorite distractions is Tolkien’s Lord of the Rings. I have artwork on my walls, maps of Middle-earth framed, every Tolkien book or movie that comes out… I try to get as much as I can. My caregiver knows that when all else fails, the answer to, “do you need to go to Middle-earth?” will be yes at least 90% of the time.
If you have a suggestion to add to this list, please leave a comment!
This group is open to anyone who lives with at least one disability. Whether by chronic illness, injury during service, genetic disabilities, hearing, sight, etc etc.. we want to get to know each other on another level, talk about a few things including ableism, how you deal with judgment, and whatever might be on your mind.
We are also open to caregivers, friends, and family.. If you want to understand a loved one a little bit more, we welcome you!
Please email me (Anna Hart) if you would like to join the meeting!
When you see a glass in front of you, do you view it as half-full or half-empty?
This really is a serious question you should look at; how do you view life?
When you are faced with a dire situation do you spring into action… or shut down completely?
Do you take flight, or do you fight?
When dealing with tick borne infections you need the self-discipline and the drive to shape your own life for the best possible outcome. No one else can do this for you.
If you need, reach out to an advocate, a mentor, or a Lyme Life Coach. (Yes, they exist!) You can write into a BorreliaEtc group for your area, or inquire at places like GLA’s Peer program.
In fact, if you are a patient (or if you have a family member with tick infections) please do yourself a huge favor and get The Lyme Ease Survival Guidebook by a dear friend of mine, Jenn Hyla.
It is a small book packed with great information on BorreliaEtc. And it’s very affordable. It will help you in “Separating Facts from Fiction to Educate and Empower Lyme Patients”
Jenn is a Lyme Conqueror who mentors Lyme Warriors. She’s been down this path herself, she has a lot of brilliant ideas and she holds online classes/workshops – or she will work with you directly via phone and/or email if she’s able! I cannot stress enough the value of this book.
If you find it a good read, please get a copy for your local doctors and nurses! Or your library! This is information that should be available to all. I’m educating a new primary care doctor about these infections and am bringing her book in today.
But that will have to be a topic for another time, have to get dressed.
Here is my contribution to the subject of the social drama people who live with Lyme Disease face in terms of relationships. –João
Lyme Disease is rare in Brazil and people do not know what it means to live every day with the resulting suffering. The symptoms my partner has shown like Lyme’s poliarthrits and chronic fatigue are still mild compared to those of other Lyme Disease patients who have much more neurological damage, including memory problems and speech difficulties, mental fog and lethargy. Or those who have their heart compromised by the progression of the disease. There are cases of sudden deafness, loss of vision and facial paralysis.
We know that every chronic disease represents a great test in the life of the patient and his family. It takes courage and it takes a lot of strength to deal with the situation. Living with Lyme is not easy: the treatments are expensive and exhausting for the patient and family. The immune system is compromised and autoimmune diseases can unfold.
The prolongation of this disease weakens the patient’s body and brings enormous stress to both him and his family; the latter needs enormous dedication to take care of their professional work, children, household activities and provide the necessary attention to the patient who suffers from the disease of Lyme.
We are led to study as much as possible to know the disease and look for ways to overcome it, which consumes a lot of time and energy. We make many unsuccessful attempts at treatment, which brings frustration and discouragement. We need to seek the strength of faith, hope, and confidence renewed every day – every moment – so that we don’t get emotionally out of balance and don’t get sick even more.
Emotional imbalance aggravates the condition enormously and we cannot allow for the negative evolution of the condition, as new and more serious symptoms can always appear.
We know other people who suffer from Lyme Disease as my partner does. All of them have their life stories very marked by the suffering of this pathology, as well as our family.
Some carry a feeling of sadness for the way the people closest to them deal with their health situation. There is a great lament regarding the incomprehension on the part of partners, family, relatives, friends and known people, who either turn their backs and fail to give them attention and care, or react with indifference or anger in the face of the difficulty that arises. Stressed husbands, mothers and fathers who do not believe in the pain and fatigue caused by Lyme Disease (as they think it is purely “psychological”).
Friends who disappear, who abandon the patient during the most difficult situation of their lives, cause more trauma that only compounds the negativity of the disease.
For this reason I decided to write this text. As difficult as the situation we are going through, we need to seek patience, acceptance, calm and flexibility to deal with the challenges of Lyme Disease. Medical support and a wide range of therapies are necessary. But the fraternal presence of other friends, relatives, family members, partners and companions is very important to be able to face all the limitations and problems brought by this framework.
Our society unfortunately does not teach us to deal with the suffering of others. We often see someone close to us in a clear situation of despondency, weakness and pain, but we simply turn away and move on. We shy away from offering a smile, a consoling word, a conversation that distracts or just silent company and peaceful coexistence. We make snap judgments about those who are living the test of a very serious illness in the family, which borders on despair at many times, without trying to understand what they are really going through and why they are in this situation, without asking, ‘what we can offer as a form of help,’ if not at least respect and recognition for another human being and his afflictions.
Providing Lyme patients with care, attention, affection, understanding and tolerance is a gesture of love and a way to show the other that we care, that the person is valuable to us, that we nurture affection for them. Words are important vehicles of message, but they never substitute actions.
Acting on behalf of the one who is suffering is not as difficult as it appears. If each relative, friends and acquaintances can do something for the Lyme Disease patient within their circle, directing as much of their attention and time as possible, a huge current of love and care is formed that helps a lot in healing the patient.
João Augusto de Andrade Neto – Paraty, Rio de Janeiro, Brasil
January 23, 2021 (shortened and translated to English on July 13, 2021, and posted to Facebook: https://m.facebook.com/groups/1765246543770673/permalink/2581711442124175/ )