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Kieran Jordan's Healing Fund

$39,095 of $15,000 goal

Raised by 436 people in 12 months
Created May 17, 2018
Kieran Jordan's Healing Fund
on behalf of Kieran Jordan
In July, 2017, our friend, step-dancer Kieran Jordan got sick with a “flu” that never went away. Symptoms included debilitating fatigue and body aches, night sweats and insomnia, low blood sugars, nausea and low appetite, tingling, twitching, shooting pains, anxiety and palpitations.

In April, after seeing eight doctors and many holistic therapists, she was diagnosed with Lyme Disease. Like many people with Lyme, Kieran was never aware of the tick bite and never had the classic circular rash. Lyme is often missed or misdiagnosed because the symptoms can be vast and can look like many other illnesses. Late-detection can make the disease more difficult to treat and heal.

Kieran is now seeing a Lyme-literate nurse practitioner and receiving antibiotic treatment. Her visits, specialized lab tests, and treatment are not covered by insurance. This comes after nine months of illness and distress, which have forced her to give up much of the work she loves — teaching jobs, performances, and more.

Kieran and her husband Vincent are both self-employed and an illness like this brings overwhelming financial stress. They have made incredible contributions to our flourishing Boston music/dance/art scene and it is times like THESE when we, as a community, are able to give back and help ease the burden.

Funds raised will go directly towards recouping out-of-pocket medical costs and lost income, and for continuing expenses including non-covered doctors’ visits, lab tests, and supportive therapies for Lyme Disease treatment.
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Hello Friends

It has been exactly one year since this GoFundMe was started by my friend Hanneke to support me in my struggle with Lyme Disease. So I thought I would check in and say hello with an update. May is also Lyme Disease Awareness month ( https://www.lymedisease.org/lyme-basics/lyme-disease/about-lyme/). Please do educate yourself and your family, and take care to prevent tick bites — not just in the woods, but in local fields, trails, and even your own garden.

It’s just over a year since I was diagnosed with Lyme and Babesia, a co-infection. It’s almost two years now since I first got sick. What a wild and bumpy ride. Truthfully, I had hoped to be “all better” by now, but I am still struggling along. Today I met with a new Lyme doctor for a second opinion, and he gave me back some hope. What can I say? I have heard about plenty of people who DO regain their health and get their lives back. But I’ve had some dark, dark times these last two years, debilitated by fatigue, weakness, nausea, pain, and disrupted sleep that never leaves me feeling rested, restored, or able to get “ahead” of this. I’ve tried LOTS of everything, from energy work and meditation to herbs, antibiotics, and heavier drugs too. There are still more to try! Here we go!

I am so grateful for all the support from my husband Vincent, my family and friends, and acquaintances and strangers too, who have sent kind messages or unexpected offerings of kindness and generosity. I am grateful EVERY DAY for this fund, which has paid for my doctors’ visits, lab tests, medications, holistic therapies, and supplements. None of this is covered by insurance! There are angels around me, that is for sure.

My little studio in Hyde Park is holding its own, and I am clinging to it like a life line. I’m still teaching a few classes every week and practicing and creating a bit on my own. Thank you to my students who keep on coming to class, even when I am pale and weak and unsure if I’ll make it through the hour! I rally all my strength for classes, and (usually) feel a bit better afterwards.

Work — a sense of purpose, skill, and a job well done — is such a gift. It also lifts my heart to see all the friendships and collaborations that have formed in my classes over the years. It comforts me to know that my dance work is out there in the world, living and unfolding creatively in new ways, through others.

I’m also still picking at the piano… progress there is slow, but rewarding and so much fun. And my daily walks are a balm… “my” woods (see below) are truly sacred ground.

Here’s a photo I found the other day. This was on stage with the Green Fields of America at Symphony Space, NYC, back in 2014. I remember this feeling of being “in the flow.” Happy, vital, and strong — music flowing through me — connecting to my collaborators, feeling my Source, and flirting with the audience! I miss this life SO much and I am working steadily (but gently) to get back to it.

Anne Morrow Lindbergh wrote in Gift from the Sea, “We have so little faith in the ebb and flow of life.… We leap at the flow of the tide, and resist in terror its ebb. We are afraid it will never return. We insist on permanency, on duration, on continuity; when the only continuity possible, in life as in love, is in growth, in fluidity — in freedom.”

I have grieved and resisted in terror for a long time now. I’m doing the deep spiritual work of accepting and letting go, and also welcoming new forms of expression, and integrating new (or previously silent) parts of myself. I’m grateful for all the spiritual friends, healers, and guides who have come into my life during this time.

There’s a nice hornpipe called “The Ebb Tide.” I’m gonna work on that on the piano. Maybe I’ll check back in when I’ve got it :)

Blessings, and thank you,
Kieran
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Hello Friends!

It’s a wet, wintry night here in Boston. I hope you are cozy and well, wherever you are.

I want to share with you my performance from BCMFest (the Boston Celtic Music Festival) a few weeks ago. It’s an 18-minute dance solo, called “Lyme: A Journey Through Illness and Healing.” It’s storytelling through music and movement — with all original choreography — and I suppose you could say it is “work-in-progress,” as my healing is still in progress.

My goals in taking on this project were to regain some of my dance strength and stamina, to focus my mind on something positive, and to reconnect with the work I love, while continuing with the long and involved treatment of this disease.

In making this work from October to January, I was deeply reminded of the transformative power of art. The creative process required me to relive the trauma of getting sick — to step right down into the pain of it — and then find a non-verbal way to express it. Over time, by showing up at the studio, brainstorming ideas, trying out music, improvising, and composing, I found that I was able to take some of the pain out of the experience (by taking power over it?), by MAKING something of it.

I could feel my body getting physically stronger, as challenging sections of the dance started to feel easier over time. And it was empowering to realize that my BODY — the very same one that felt sick and broken — could be the vessel for this form of artistic communication and transformation.

By the time the piece was rehearsed and ready, I just wanted to have FUN on stage. But it’s not all jigs and reels — some of it involves very raw and personal ways of moving. Being able to share that vulnerability with an audience, and to feel the attention in the room, was the greatest privilege. And revisiting aspects of performance that I know and love so well — the grid of the stage lights above me, live music surrounding me, my own public offering of breath and percussive sound — felt like coming home.

Thank you to all the hometown friends who were able to be there on the day. And thanks to everyone who has some time to watch this and share the experience!
As always, love, Kieran
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There have been some recent donations to this fund, so I just wanted to say a quick hello and THANK YOU. And Happy New Year to you all! I continue to be gobsmacked by the kindness and generosity from everyone here — from family and dear friends, to people I don’t even know.

A year-and-a-half into this, I am continuing to experience symptoms of infection, and continuing with what seems like it will be long-term treatment — now a mostly herbal and nutritional protocol — for Lyme and Babesia. My monthly visits to the Lyme doctor are $250, and the supplements she prescribes are about $800 per month. Occasional lab tests are $300-$500. None of this is covered by insurance, so I can’t emphasize enough what a life-saver this Go Fund Me campaign has been. Supportive therapies I’m doing, like neurofeedback and acupuncture, are of course, out of pocket, and I don’t even like to think about those weekly and monthly costs. They do feel like helpful and worthwhile therapies. I often think fondly and gratefully of YOU when I go.

With all of these appointments, and the regimen I am on, life is busy. I read something recently about the healing power of “experiencing stillness,” and that really struck me. I never realized illness could be such a full-time job.

Anyone who knows me know that stillness is NOT my default mode. And I have also found that one of few things that makes me feel better with Lyme is not stillness, but movement. In my past updates here, you’re heard me mention Irish dancing, daily walks, biking, swimming, and even ballet.

When I move my body, I feel whole. Is it the circulation, the blood flow to the brain, the rhythm in the movements, the expanded breathing, the detoxing sweat? Yes. All of that. But too much of anything can easily exhaust me, so I learn — and try to listen to — my limits, every day. And maybe healing won't entirely come from all this trying and moving and doing, but also from being still?

January 1st was the two-year anniversary of me opening my dance studio in Hyde Park, Boston. The photos from 2017 popped up on Facebook, and I got a little bit of a shock — realizing that I have been sick for almost all of these two years, and that I have not been able to give the studio all that I dreamed and imagined when I opened. But also, realizing, with great pride, that I am still open — struggling along, but head-above-water — and still believing in my original vision for the space. The volume of business and my energy for teaching may be pretty low, but we certainly have had some special dance classes, music gatherings, and art-making experiences in my sweet little space.

The most recent art-making experience was today — a rehearsal for BCMFest (the Boston Celtic Music Fest). I will be performing a new solo at the festival next weekend. It’s a dance depiction of my journey with Lyme … a work-in-progress, you could say, just as my healing is in progress. I committed to this project a few months ago, thinking that it would be a good motivation, a manageable goal, a positive mental focus, and a way to reconnect to who I am through the creative process. It has been all of that, and more… I suppose it has also been kind of a physical progress report for me. There is one section that is fairly challenging to dance. I composed this part mostly in my head back in November and could barely dance it in my body. Now I can. That must be a sign of healing. Baby steps, but steps.

So if you’re around, the piece is scheduled for 4pm on Saturday, January 19th at The Sinclair in Harvard Square. I’m ever so grateful to Christine Hedden and Matt Heaton for making the music with me. Here we are from today, in my studio. (We worked hard to get this selfie!) On we go.
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Here’s the latest from my Lyme doc. While I am making some progress, she believes that I still have an active Babesia infection. This is disappointing, but no surprise to me, as I am still experiencing symptoms of that tick-borne illness every day!

So, on we go, with a multi-faceted treatment of herbs and detox and diet and exercise and nutritional supplements. I’m now in my 17th month of dealing with this life-altering disease, but who’s counting? It’s interesting to try to find the right perspective … on the one hand, I have to hope for, and work towards, a full recovery. On the other hand, I have to accept that THIS IS my reality right now, and that it has changed my life dramatically.

As the year comes to a close, I want to thank you again, for your prayers, encouragement, and generous support, but also just for reading these updates. I didn’t intend to write these long sagas or to be so public about my health. But I will admit that it has become a therapeutic outlet for me. I was an English major in college, and I wrote professionally for newspapers and magazines in my 20s. It has been comforting, in a way, to return to writing as another form of expression.

I also think that the performer in me needed an audience, one way or another! Since I have not been able to get out, tour, or perform much since getting sick, these written updates have become a new kind of creating and sharing. Some of you have suggested that I write it all up in a book. If I ever do decide to do that, I have the title in mind already — From Stage to Page: One Dancer’s Journey Through Lyme Disease. How’s that?

Something funny happened the other day. I checked the mailbox at my dance studio. I don’t get a lot of mail there, since I use my home address for business mail. So amid a handful of junk mailings and notices for my landlord, there was a small soft package from a dance supply company — one I have not heard of and not ordered from before. Oh, that’s nice, I thought. They found me somehow. Inside was a catalogue of their products, and, a pair of pink footless ballet tights. I wondered if they had made a mistake, but it seemed like a free promotion — to send along a legit pair of adult dance tights.

The color, the feel of the fabric, everything about those tights rattled something deep in me. I have said privately to myself all along through this illness, that if I make it through this ordeal and really regain my strength, I want to dance again to the Tulla Céilí Band in Ireland, and I want to take a ballet class. I’m a ballet beginner. I did not study ballet as a child and really only had a couple years of classes here and there as an adult. But showing up at the ballet barre for a morning class is a beautiful practice that can benefit any dancer, or any human!

The tights in the mail made me cry a little, but also felt like a good omen, and a silent prayer to keep on going.

So, speaking of keeping on, I am planning to perform at BCMFest (the Boston Celtic Music Festival) here in January. I’ve been working on a new solo piece… a dance exploration of my journey through illness and healing. I’m grateful to fiddle player Christine Hedden who is working with me on the music. The whole thing feels very vulnerable, personal, a little premature, and a little crazy right now. But it is one small project that is jiggling my choreographer mind again, and pushing me to just be in the studio, with my body — as it is — while I try to gently increase my agility, fluidity, stamina and strength. Riverdance, it is not! But if you’re local and you want to see something different, come along to the Sinclair in Harvard Square on January 19th. My performance slot is at 4 pm.

We have a saying in dance, “Fake it ’til you make it.” (Well, I know the saying from dance, but I’m sure you may know it from other facets of life). I love that sentiment because it really does imply, 1) that all of us are faking our way through, all the time. Life is an improv, and we just give it our best shot. And 2) that we WILL make it eventually. Someone recently told me that I have become used to being a sick person. And now it’s time to act like a well person, or at least to fake it ’til I make it. So, I am trying to take this on. I have years of dance experience to show me how.

Another quote I’ve been thinking about a lot recently is a motto of Mother Teresa’s. “Not all of us can do great things. But we can do small things with great love.”

I used to love at least ATTEMPTING to do great things. Let’s make a show from scratch. Research the ideas, pick the tunes, make all the dances, book the theater, make the poster! Wear all the hats — producer, choreographer, director, and dancer. Let’s bring in 10 dancers and five musicians and a lighting designer and Vincent to do the sets … and I’ll plan all those details and know everyone’s parts, and my own … I loved this! I think I was good at it!

I am so far from being able to do this right now, and I miss it. I have grieved it deeply over this last year. But I am doing small things, much much smaller versions of this, and trying to do them with great love. It helps. It keeps me going. I’m grateful that I have my studio as a base for this work, and I’m grateful for everyone who shows up to join me there. I opened my new studio in January 2017, and seven months later I got flattened with Lyme. So business-wise, I’m just treading water … fake it, fake it, dance tights, great love.

As we get ready to say goodbye to 2018, I’m giving the last word here to my friend, button accordion player James Keane. If you know James, you know that he is a passionate guy with great zest and an insatiable appetite for music and the communities that make it. And also, that he has faced several health challenges of his own over the years. James, I think about you and your words EVERY SINGLE DAY. When we bumped into each other on the street in Miltown Malbay this summer, you said, “As long as you can get out of bed on your own in the morning, THERE ARE MORE JIGS AND REELS TO BE HAD!”

Happy Holidays everyone, and Happy New Year!
Love Kieran
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$39,095 of $15,000 goal

Raised by 436 people in 12 months
Created May 17, 2018
Kieran Jordan's Healing Fund
on behalf of Kieran Jordan
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