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/ )
By Lorraine Hart
It’s May, and I find myself wanting to be on that grassy triangle at the Purdy traffic lights. This will be the first time in fifteen years I haven’t held our Washington Lyme Rally, holding my, “Lyme Lives Here” sign, and waving to the cars. I began the rallies on my own, earlier in Anna’s twenty-plus years of dealing with Borrelia etc, before she was officially diagnosed—and my frustration with medical politics has continued to make me (and those who have joined me) haul out signs yearly, and wave at passing people. I’m not Chicken Little, the sky is not falling, but the first epidemic of climate change is already here. As our planet warms, cases of vector-borne illnesses double, triple, and we don’t know enough. Our aim is always to reach out to our community with education, not wanting other families to face what we’ve had to, for decades now.
But this is the year of Covid-19 and, trust me, I take the social-distancing very seriously with Anna’s lack of immunities. Though it breaks my heart to cancel, we must. Now, that doesn’t mean I don’t still want to shout from every rooftop:
1. Yes, there are ticks in Washington, and a good percentage of them carry diseases, both bacterial and viral. We have not responded to this crisis early enough! We need state-wide tick drags to gather statistics, and we need better testing. (That last phrase echoes weirdly in my brain)
4. Education—from the general public, to doctors, nurses, and the rest of the medical system. It’s time to UN-learn the, “difficult to get, easy to cure” mantra of those who seek profit over care. Time to learn the truth about these diseases, their origins (Bitten, by Kris Newby is an education in itself) and how to help patients who really, truthfully, suffer. It’s time for a public-awareness program to teach prevention, and what to do when bitten (save that tick, much easier to test!). This could begin with a Proclamation, declaring May, every year, as “Lyme-Awareness Month” with public-service announcements, perhaps programs through the Parks Department.You won’t see us at the Purdy lights this year, but rest assured, we activists are still working on behalf of our communities. We may not be able to get together in person, but we’re working on a Bill to present in Olympia. Nothing but the facts, ma’am—we’re turning our backs on the politics, and presenting a Bill about educating Washingtonians on the basics of preventing tick bites, recognizing ticks, and symptoms of infections. While we take care, specifically in this C-19 crisis, we still can’t stop trying to warn of the epidemic already creeping through the perfect climate of Washington today.
Update 2021: these classes have been discontinued due to strange new neurological symptoms I’ve been dealing with. If you are at all interested in learning more about Qigong please explore YouTube, there are many wonderful resources. Or send us a message at BorreliaEtc@gmail.com
AJ, Mum (my Caregiver), and I have been working on a gentle session of Qigong suited especially for the chronically ill.
Movements we explore:
If you are bedbound, let me ask you this: can you still close your eyes and use the power of your imagination? Think of raising your arms above your head, and move what is called your Light Body without any effort from your Physical Body. This will still move your energy around.
Make sure you have a chair or a bed close by so you can change positions when and if needed. These practices can all be done in bed, sitting down or standing up. You do what you can, nothing more.
Moving is a vital part to recovery, and I’ve not found anything else more suited to the healing process.
A couple of videos I’d love everyone in the BorreliaEtc Community to see are:
Viv is a BorreliaEtc patient and activist… but she fought for twenty years and without any recompense (spiritual or physical) ..so she became burned out. Then a friend mentioned Qigong to her and she was off on a quest of compassion.
Viv explains how she started to practice before she could move any part of her body and why that works. She also takes you through a little practice to relax the body.
If you have any questions please leave a comment below!
See you in the Qi field!