From The Hart
Living With Tick-Borne Infections in WA State
Worried, a poem
Am I worried?
Only all the time.
I lose myself in so many different ways. To medicine, to anger, to pain. Will I ever find myself again? Even a piece of me?
I search under rocks and in all the crevices of the wild, but still, I constantly disappear within a rhythm that has become second nature to me: slowly and steadily.
Slow and steady, like the heart at rest, like the drumbeat that calls us home.
I’m supposed to fight — fight the diseases, fight the doctors, fight the insurance, fight the system, fight the injustice, fight for me.
(For me? Am I sure?)
Most days.
But, right now, I’m exhausted. and I grow all the more weary of medical violence and trauma.
Anna
May 4th, 2024
New Logo!
A few months ago, Lorraine showed me some prints she had just purchased from an American artist named Elizabeth Guilford. All of the prints were moths – different types and beautiful colors throughout.
Elizabeth hails from Kentucky, USA, and received her Bachelors in Art in 2012 from Xavier University. She has illustrated children’s books, she paints, she draws, she sketches from photographs, she uses her paintings to create new prints with words of encouragement… she has an incredible portfolio, which can be found on her website.
At the bottom of the pile of moths was a Luna Moth, a really gorgeous Luna Moth!
When I saw it, I immediately wondered aloud, “Could we commission her to work on our logo?”
I had made the first logo by using Photoshop and sticking a green awareness ribbon over a luna moth. Nothing fancy:
(My first logo)
But I knew I wanted to work with an artist to create a real logo.
After a few messages, Lorraine and I officially hired Elizabeth, and we were so excited to see the process unfold!
Elizabeth checked in with us every step of the way. Every request I had, she worked her hardest to fit it in!
First, she sent me a sketch of the moth with an awareness ribbon wrapped around it. When we tweaked the details to my liking, next, she added in colors.
Now, as she was showing me the work she had done, I would get these little ideas – well, I thought that they were little. For example, some soft moonlight behind the moth’s antennas.
Just as I was starting to talk myself out of it, Elizabeth sent me this beautiful image:
She sent me one on a white background, one with a transparent background and the last on a black background.
All I have to do now is find a way to include the site’s URL.
I’ve also been playing around with different filters and having such a good time with the creative process!
I want to share a bit of an email I sent to Elizabeth:
22 November, 2023
Hello Elizabeth!
Don’t worry, this message has no requests, no changes.. only appreciation.
I’m in love with the moonlight. I can’t stop looking at the way it comes out on a black background (my phone is set to dark mode) …it glows!! It’s really pretty!
Your talent reaches so many different facets of artistry – shading, highlights, color, contrast, textures… I could go on and on, but it’s the way everything settles together.
Balanced and beautiful.
I want to say a special thank you for checking in as much as you have, for receiving the feedback with cheer and enthusiasm, and for following all these extra thoughts along the way. I lack the words to tell you how much it means to me, and to Lorraine, that you’ve given so much care to each request – no matter how small it seemed on this end.
I wasn’t expecting the moonlight to make it to the final product before I saw your latest images.. I had dropped it in my mind because I thought it was creating more questions than value.. and then comes along your email and.. wow.
Woooow.
I respect your process a thousand-fold because of how inviting and professional you’ve been. Your work brings tears to my eyes (the good ones!)
I can not thank you enough. But I’ll try!
Thank you, thank you, thank you.
♥️
Anna
If anyone out there is looking for an artist with an incredible eye for details — please try Elizabeth. I promise, you won’t be disappointed.
Good Grief – a Poem
GOOD GRIEF
The origin of the word trauma
Is not just “wound,” but “piercing” or “turning,”
As blades do when finding home.
Grief commands its own grammar,
Structured by intimacy & imagination.
We often say:
We are beside ourselves with grief.
We can’t even imagine.
This means anguish can call us to envision
More than what we believed was carriable
Or even survivable.
This is to say, there does exist
A good grief.
The hurt is how we know
We are alive & awake;
It clears us for all the exquisite,
Excruciating enormities to come.
We are pierced new by the turning
Forward.
All that is grave need
Not be a burden, an anguish.
Call it, instead, an anchor,
Grief grounding us in its sea.
Despair exits us the same way it enters-
Turning through the mouth.
Even now conviction works
Strange magic on our tongues.
We are built up again
By what we
Build/find/see/say/remember/know.
What we carry means we survive,
It is what survives us.
We have survived us.
Where once we were alone,
Now we are beside ourselves.
Where once we were barbed & brutal as blades,
Now we can only imagine.
Call Us What We Carry
Poems by Amanda Gorman
National Youth Poet Laureate
(Page 28)
42!
It’s my birthday!!!!!!
And I’m having a beautiful day already.
Looking At Maps
It shows that they are watching the spread of many tick-borne infections. But as a start, I only wanted to look at Borrelia burgderfori, so I clipped out that map.
Then I laid the Nat Geo’s map over IGeneX’s map — and, well — see for yourself:
Those maps match up extremely well.
24 October, 2022
The Alphabet of Caregiving
Lorraine has been working on a project — this will go in the Caregiver’s Corner eventually with alt text, but for now I only have images.
More to come..
New phone theme!
I have a new look for my phone, and I’m quite pleased. I love the luna moth especially since the CG and I first talked about it being a wonderful mascot for tick infections.
Support Seshes Coming Up!
In the past 5 months Lorraine and I have been working with a group of wonderful people, who are also disabled, to set up a general support group on the Second Monday of the month.
This is not a BorreliaEtc group, it doesn’t matter the type of disability one walks with.
Around The Fire Support Seshes were born.
If you’d like more information, please contact us privately by email.
This group has worked so well that we were asked if we could expand our scope. We have around 10 people per sesh, which is a good number for the 2 hours we have.. but some couldn’t make the original time (it is late for Europeans) and some people wanted to meet more regularly. Beyond that, we had caregivers join us and so we now have three groups:
1. The Original Sesh stays the same, the 2nd Monday of the month at 2p Pacific USA Time, 5p Eastern USA, 10p British Summer Time.
2. The Caregiver Support Sesh is on the Second Sunday of the month at the same time as the original group. (2p Pacific, 5p Eastern USA..)
3. The Additional Support Sesh is on the last Sunday of the month and is at a different time: 12 Noon Pacific Time, 3p Eastern USA, 8p British Summer Time, 9p Eastern France and German Time
September Seshes:
🔥 Around The Fire 🔥Caregiver Support SeshSunday 11 Sep5p EDT (2p PDT)
🔥 Around The Fire 🔥Disability Support SeshMonday, 12th September5p EDT (2p PDT)
Contact us for more information
🔥 Around The Fire 🔥
End of the Month Additional Sesh
Sunday, 25 September
3p EDT/12p Noon PDT
National Improved Medicare For All – Thursdays With Tracy 21 July, 2022
Last month a dear friend, Tracy, asked me to be the guest host for her 21 July, 2022 podcast whilst she was busy working on organizing her state’s Medicare For All march. Since M4A was the month’s topic, I quickly looked around for fellow advocates to join me on screen.
By some incredible divine intervention, I was able to scramble together an excellent panel!
There was myself, the CG*, Laura Fielding (craftivist, founder of Red Berets Medicare For All), Andre Stackhouse (Campaign director and board member of Whole Washington), and Congressional Candidate Rebecca Parson (WA-06).
When I do projects like this the CG is always at least in the room so she can be close by if something happens with me.
Best scenario: she helps me stay on track when my brain blanks, or can’t catch up.
Worst: she rescues me from a sudden onset of symptoms.
*And I want to say: Lorraine loves when I call her “the CG.” It’s using her professional title and said with nothing but love, honor, respect, and humility.
Here I have to stop and thank everyone that joined me; you all made time in your busy schedules to talk to me for a small podcast. You could have said you were busy, but you didn’t.. you all put in the effort and I cannot thank you enough.
The general subject was Medicare For All, but the discussion covered many topics:
- The many marches happening right now across the country (Indiana, Washington, California, New York, North Carolina, Washington DC, etc)
- Activism for state-wide single payer healthcare in WA State, how http://wholewashington.org got started
- Ballot initiative 1471
- National vs. State-by-State strategies and http://medicareforalleverywhere.org
- The documentary “Healing Us” about the for-profit healthcare system in the USA
We are all Western WA residents and the CG and I volunteer for Whole Washington’s 1471 ballot initiative campaign.
If we were to get single payer healthcare here in Washington State, it would be an incredible step forward for the many patients of tick-borne infections who live here. We need to see doctors who dare to treat outside the normal guidelines, therefore they don’t deal with insurance at all. In order to cover their practice, many charge hundreds of dollars per appointment. Some are even up in the thousands..
Most patients cannot afford that.
Insurance companies should not have the right to refuse you a treatment that you and your doctor have agreed upon.
But they do.
“Healthcare” is a misnomer in the USA; the for-profit industry is keeping sick people sick and the only motive that drives medicine is profit.
Since Borrelia is a bacterium, antibiotics are the main line of defense doctors use. But most abx for most bacterial conditions are prescribed for only 2-3 weeks. It’s not a long-term profit and therefore finding new abx is not a priority.
That is insane, to me.
In 1980 the US government decided to allow researchers to patent and profit from living organisms. For example, a scientist could discover the causative agent of an infection and then patent that organism so whenever vaccines are made, or new treatments are found.. that researcher could get their cut.
From that point on researchers and universities were no longer driven for the common good. They wanted their money.
That has to change.
#medicareforall #medicareforallEVERYWHERE #m4a #healthcare #medicalpatents #yeson1471 #wholewashington #lymedisease #borreliaetc #healthinsurance #forprofitmedicine #activism #marchforhealthcarejustice #capitalismkills #latestagecapitalism #2022election #universalhealthcare #peopleoverprofits #brandnewcongress #notmeus #Lyme #borreliosis #healthblog
The Stages Of Grief Simplified
Towards the end of April this year, my biological father, Douglas, died. One night he wasn’t feeling well, was dizzy and not making sense with his words, so his girlfriend called 911.. they brought him into hospital to rule out things like stroke.. only to find he had an abdominal aortic aneurysm and died on the operating table in the early hours of the morning. There is very little the doctors can do for you.
It’s been hard for me to process because I’ve been physically, mentally, and spiritually distant from him since he would not believe I am ill. He would take cheap shots at my mother; that was the only way he could express his pain from their separation. He drunk the rest of it away for most of his life.
But then there were times he’d play his guitar.. we’d both sing.. and all would be right with the world for about 3-4 minutes. I grew up listening to him play all kinds of music live, it was great.
But aside from music, we lost our connection. I would have to be the one to visit him, he never came out west save for once in 2002. I was 21 years old, getting married, and looking forward to starting a somewhat normal life.. he arrived right before the ceremony and left less than two hours later. Never even made an effort to spend any time with me.
But I wrote to him for years with no answers. I called him, sometimes from my hospital bed. My brother became so distressed at his lack of regard for me that he ended up moving out to the West Coast in 2008 so he could have me and our mother nearby.
Now the only time I find myself emotionally connecting is when music plays that I’ve heard him play. That will bring me back.. thank goodness for music.
A friend painted the following picture from one of my photographs.. so I added words of grief over it. Speaks perfectly to what I’ve been feeling since getting this news.
From The Hart 