Writing

When I first met still.being.moved, her name was Embody. She was just being born into this world and I was among those invited to attend the birth. She came into being through the genius of my friend and teacher, Sarah Marshank, about ten years ago.

We’ll start wherever we are.

Already, there are movements your body knows and feels safe doing.

Maybe you dance, practice yoga or Pilates or Nia, engage in martial arts or Five Rhythms. Maybe you’ve done Jazzercise, hoop dance, or other aerobic workouts to music. Breathwork. Rowing. Weight lifting. Barre. Maybe you enjoy walking. We can start there …

Maybe you have yet to discover the movement forms your body feels happy and safe with.

Perfect either way.

Contact Kathryn with questions: kathryn@wellwisestrong.com

Where is our base? That depends. Sometimes it’s our two feet. Other times, it can be hands and knees. Our back body — as in lying down. Our buttocks and thighs — as in sitting. So many options …

In this playshop, we begin by embodying a variety of bases, so we’ll have several to choose from when the music starts. During the 21-minute playlist, everyone is free to choose a base to begin and then to allow the song’s beat to move us from there.

When we feel curious, we can change to a new base to see how the beat comes through now. When the next song — with its new beat — comes along, which base will we choose to play with? The choice is always ours.

Contact Kathryn with questions: kathryn@wellwisestrong.com

The Medicine Moves Playshop series might be for you if …

• you love music (and are ready to hear some new tunes)

• you need more movement in your life (but not in a public setting)

• you would enjoy a friendly community experience (facilitated by an experienced leader)

• you are interested in freeform movement (and are looking for guidance and inspiration)

• you can spend 1.5 hours on Mondays, April through mid-May

Yes? Maybe? Read on.

Men! I’m inviting you to move with me to music. In an online community. (Which to me feels like the only safe way right now … )

Why do this? Well, for starters, for enjoyment, exercise, connection, tension release, increased neuroplasticity, circulation of life force energy, motivation, inspiration, an opportunity to hear new music … feel free to add your own benefits to this list.

Here is my vision, still taking shape.

*A sense of community within a safe, private space.

*Guidance and modeling from an experienced leader.

*Freedom of movement and expression.

*Inspiring music.

Read the expanded post for details.

BTW, it’s free (or by donation, if you prefer).

In this slow-paced, gentle playshop, we practice safe movement in our spine and explore how music can inspire this movement into something else. Something possibly resembling a dance, possibly not. My hope is that your body will decide, based on your sensation of comfort and pleasure.

We begin with a teaching: three motions from yoga, each done in two directions, and each presented with options for sitting, standing, and reclining. If you prefer not to sit on the floor, it might be helpful for you to have a chair, cushion, or ball to sit on. A mat or rug would be good for reclined exploration.

Next comes a 20-minute playlist, when we can continue to play with spinal movement, alternating with stillness and witness, as our bodies choose.

Contact Kathryn with questions: kathryn@wellwisestrong.com

In this event, we play with our breath, allowing the music in the 28-minute playlist to inspire varying patterns and intensities. I will provide a bit of guidance and a few ideas up front, but what you do is completely up to you. Nothing is expected of you. You can turn off your camera for privacy and you will be muted while the music is on. If you stay for the whole event, there will be a few minutes at the end for voluntary sharing.

As always, no previous experience — in breath work or in movement — is required.

First, a brief intro. I’ll guide you through some OPTIONAL, VOLUNTARY exercises designed to help your voice emerge in a way that is pleasurable and creative. If you prefer, you can just witness me doing the exercises. Then I’ll sample the playlist for you, giving background about the songs and suggesting ways to interact with them when they come up in the playlist.

Next comes the music itself: 35 minutes of tunes, chosen for the various aspects of voice: gorgeous, goofy, hypnotic — some for listening and others that invite a singalong. While the music plays, the invitation is to slip in and out of movement, stillness, and witness, as we choose. As always, we conclude with brief optional sharing.

Play: “To engage in activity for enjoyment and recreation rather than a serious or practical purpose.” We play to circulate our life force energy, to let go of preconceived ideas of what’s “normal” or “proper,” and to joyfully connect with others.

My aim for this playshop is to help stimulate movement creativity by providing opportunities for pretending to move like an animal, a fantastical creature, or a force of nature — or to try on and play with various emotional states in the safe container of our movement space. Juicy, liberating, and fun.

Questions? Ask.

Contact Kathryn to register: kathryn@wellwisestrong.com

In this one-hour workshop / playshop, we experience the relationship between physical sensation and music. We begin with a guided meditation on the range of somatic responses to various soundscapes. Next comes a 20-minute playlist, when we may slip in and out of movement, stillness, and witness, as our bodies choose. We conclude with brief optional sharing.

Your role? Relax, receive, and allow your unique response to arise. All responses are welcome.

The photo is from the plaza in San Pancho, where Christina worked for a decade in a hair salon.

I received this update from her today. She is asking the universe for buena suerte — good luck. She could really use some.

 hi dear friend

ive been living in my car pretty much all the time and its just a big cluster fuck of bags

my friend said she sent 20 bucks for gas so i came on to paypal to see and i realized you sent this amazing donation and others that i didnt respond to … im sorry

im trying to get a plea for basically “bad operating” of a vehicle so . . . that wouldnt be a felony or damn jail time,. or 6 months plus with no license . . . and a way smaller fine

i am asking the universe and all its magic and all its friends to send me so much buena suerte

I’ve been avoiding writing about Christina. I cannot find any hope to highlight in this story of hers, as her life continues to fall apart. She’s stuck living at home with her parents — which, by the sound of it would be intolerable even for a week-long visit, let alone two years and counting. With no transportation, she is isolated — she can’t visit friends or even take Ollie to the dog park.

And her body. She now has issues with her lungs requiring antibiotics and prednisone, three accessed teeth …

Somehow she has retained the capacity for joy in small things and a bit of hope for the future. I can’t see it, but I’m glad she can.

I am not sure why I’m writing this, aside from a commitment I made to myself in August 2020 to tell her story.

Christina fell asleep at the wheel and smashed her van into a telephone pole, breaking her sternum. The police mistook her for a junkie and are charging her.

I wish I was dead.

My van is gone.

My way to escape the stress here at home is gone. 

The tiny bit of freedom I had is gone.

I don’t know what to do.

I'm really scared.

Worried.

Done.

I can't breathe.

I am really just wanting to die. 

This has been a summer of anguish for Christina. Respecting her privacy, I’ve captured only what she has written about her physical state.

Please send some magical vibes my way. I'm really worried. I'm feeling bad I adopted Ollie. He hasn't played with another dog in forever.

This painful and scary thing has been happening. My tense leg muscles won’t extend all the way. They shake involuntarily when I stretch them just so far. They ache in the bones and I can’t stand for more than five minutes.

I feel like I could sleep for years. My POTS symptoms make it worse. Standing up almost puts me to the floor from lightheadedness. I can’t go upstairs without reaching a heart rate of over 140 bpm. I can’t make my bed or do laundry …

A sweet young man from Christina’s distant past has shown up in a way that seems to offer both possibilities and complications. She is weighing these on her delicately balanced scale of survival.

I'm broken. Van life has been painful. The van is totally unusable for two people to live in. I made it as comfy as possible with sleeping bags and blankets. But still too many metal hooks and bars on the floor that hurt, blankets or not. If the van was set up for living in it with cubbies and storage, we would at least have to places to put stuff. I've been trying to show him. Keep clothes together, food over there, electronics and charger there, blankets there, and dirty things there. He’s like where's my phone and just rips around looking for it and then it's messy AF, a disaster pile of crap.

So ya. Losing my mind. Gonna have to tap out soon. Can't do my life like this.

Took Ollie for a ride today. He was an anxious mess. I figured a Petco trip might leave a happy memory. On the way home my van was shaking so hard I almost started crying. Someone was tailing me and it felt like the tire was gonna blow. Trying so hard to stay calm, say the right words. I drove with one hand to keep an arm on him and the leash cuz he kept trying to jump off the seat and go on the floor and under the middle console. So ya phew was too much and I just wanted him and me back in my room — my bubble — safe from stress.

I'm gonna check tomorrow and hopefully it's just the same tire that keeps going flat. I can NOT lose my wheels. That was probably why I teared up once the van started convulsing. It was going 60 and I hadn't felt the shaking in town so ... hoping it's just a damn tire.

Thus far, most of what I have posted about Christina I got through stealth. She writes me random stuff at random times about her day and her life, not thinking I will use any of it in a blog.

This time, I asked her to write. She forgot, and then she remembered, and then she forgot … so what follows is mostly unfiltered Christina, as usual, but with encouragement to just keep writing. And as usual, I find her words both heartbreaking and wickedly funny.

For the back story, see the previous blogs. This update features what pooping can be like for a person with EDS, the hazards of unfamiliar hot tubs, a pinball date, and a motorcycle fantasy.

What shines through is the spirit of a woman who still loves life when some others (definitely including me) would have given up.

Six weeks ago, I predicted that Christina would have to return Ollie, her adopted pup. I’m happy to say that I was wrong. While the situation isn’t perfect, the bond seems worth the pain. For example …

When the family was together I wasn't watching and had Ollie’s leash in one hand and was looking the other direction and my dad came around the corner and Ollie went to go to him forgetting I had his leash and wow. Took my shoulder out and I tipped over on my stomach. I was sitting in the grass and then knocked and dragged sideways. I'm not mad lol. Just hurting.

My aunt from South Carolina invited me to visit for a few weeks. Have to think about it, as it’s a bit pricey to have Ollie down below on the plane.

For most of us, “surviving” the winter entails discomfort, inconvenience, perhaps loneliness. For Christina, survival takes on a more literal meaning. She has told me that the cost of heating her parents’ uninsulated house to any degree of comfort for her body would cost around $1000 per month. This amount is out of reach for her family. There is also increased isolation to consider and the depression that ensues. As Christina already often feels suicidal, staying in NH in her parents’ cold house – alone in a small minimally heated bedroom – poses a risk to her survival.

Her vision, as it has been for the past decade, is to be in a warm place among friendly people. Her default – the apartment in San Pancho – is unavailable. So what are her possible options now? I can envision a couple. Maybe you can think of others. If so, please tell me ...

Oh my sweet sweet girl, I can close my eyes and see her in the pond, or taking a bow over and over without being asked, cuz she knows it's cool and she wants treats. So many memories. She always would just put her two front legs into the car, and peer back like, I'm your baby, I know it, so lift me in haha.

She could of course do it herself, not easily in her final years but, when she was more than capable, ya. It would just crack me up A big ass dog with its legs on the seat, looking back at me, wanting me to "pick her up." Half the time I'd just put my hands by her legs and back end, and she'd jump in. She just wanted that littttle extra spoiling. I soooo didn't mind doing it.

You may have been wondering about Christina. I haven’t reported since she left for Mexico in December. Many reasons for that. First, things kept shifting, so it was hard to know what to say about her experience. Then, as I began to get clarity, I felt that the story was just too depressing. Pain constraining her engagement in the community. A creepy guy repeatedly harassing her. A friend who promised companionship and support utterly abandoning her. A landlord refusing to fix broken things. The water supply running out …

So now, she’s getting ready to head back home to her parents in New Hampshire. This year’s trip to San Pancho has been … a learning experience.

Here are her words, which I have chosen from among her messages, describing her current state. And yes, donations are still most welcome and appreciated.

I am planning to go. I have to try. I need this. It always has seemed to work out so I’m really trying hard to worry less. Block out the fear I hear in my head and the fear I hear from my family and just go for it. I can make it. And with my new hot-pink cane to bring with me …

And now I have Dylan, who gets me and I think will be helpful. This year he has promised to make food once a week for me and also to introduce me to a few new trusted friends. He has high hopes for me. Without that, I’m not sure I’d go in my current state. But I’m going to make a leap of faith and do it. With your help and the donations and with the attitude and understanding Dylan has about me and my life and my needs.

I’ll deal later with my tears of missing my sweet mom and dad.

Still, I get scared.

Reading this blog may help you understand what it’s like for me and the thousands of others who may look healthy and fine, but are actually suffering from chronic illness, pain, fatigue, mental issues, inability to do basic things and all that comes with that.

Understanding that some things just don’t go away one day. that maybe certain things will never get better, no matter how hard we try or how many things we do, vitamins taken, treatments tried, affirmations spoken, prayers asked, specialists seen, etc., etc. All they or I can do is to try to manage the best we can, every single day. Even hour to hour. But having support and some understanding really does help us.

Just unsure about everything it seems. I’m not sure what the future holds for me, health-wise, and where I’m going to live and how I’m going to survive. That all gives me major anxiety and lots of panic attacks but I just try to make it one day at a time.

I really want to again thank you all for your continued support and care. It really means a lot to me and is a huge blessing I’m very grateful for. I send all of you my love and I wish you all the best.

I’m feeling very torn and emotional about leaving Mexico. I've been coming here almost nine years. A big chunk of my heart and soul will forever be here …I can’t leave the house without seeing familiar faces—locals or expats—who wave from across the street and smile or pass me in the street and stop for a chat. The human connection is really important to me.

NH seems like a different country, culture, and language from what I’m accustomed to here … If I was to walk five minutes outside my parents’ house, I would not be getting a smile or wave from anyone. If anything, I have to watch out for the crazies who love to speed down the back roads …

I don’t wanna get worse, but my shoulders and knees are loose and keep cracking. I did basic things yesterday and I can’t walk today. I thought of using a cane for the knee I can’t put weight on but then my shoulder keeps sliding over and out and I don’t know how I could even use a cane. Trying not to freak out.

Feels like going back to NH, I'm losing all my badass. I'm just a NH girl in a slow quiet blah druggy town. Errrrr.

But the nieces are there …

That’s life. Maybe I’ll hang out at our two Mexican restaurants.

You look so good

Whatever you're doing, it’s working.

Wtf

I'm underweight and alone all the time and don’t go out.

And I’m doing so good???

Another couple guys really pushed for haircuts.

Come on. U can.

People with EDS sometimes refer to ourselves as Zebras. According to the international Ehlers-Danlos Society, the reference to zebras is borrowed from a common expression heard in medicine: "When you hear hoofbeats behind you, don't expect to see a zebra." In other words, medical professionals are typically taught to look out for more-common ailments rather than testing for EDS.

I want to thank everyone who has been a part of my journey here. Especially sweet Kathryn and my new Chacala connections, and you all who are reading this. I never liked asking for help my whole life, and when I did need it, it wasn't there. But now I’ve had to learn now to ask for help and to accept it and not to think less of myself. Being unable to work and do hair has really hurt me emotionally, mentally, and, of course, financially. I also miss the human interactions and making people feel happy and pretty. They would leave with giving me a huge hug and smiling proudly to go show off their look.

I appreciate continued prayers and any help you would be able to offer, as the donations are keeping me afloat.

I am grateful for all the care and help from family and friends, and complete strangers with big hearts. Without the help of my family, Kathryn, and Eden and Lora and Natalie, and the donors, I do not know. My life would be even more unbearable and I’d really push to leave this life. I'm just so tired of never having a break from it. And if it was more predictable, I could get a better routine, but, it’s just all over the place. I try sooo hard to track patterns but I fail most times. Just feels like my vessel is broken, and it’s just breaking my heart and soul too. Too many years, too many surgeries, too many I’m sorrys.

As of Saturday 10/17/20, Christina is back in the warmth. I know she is fearful about being in Mexico alone this year with her new level of incapacity. Still, she needs to know whether her body’s accelerated deterioration over the past year resulted from being cold and cramped and isolated in New Hampshire or whether the increased level of pain and disability constitute her new normal even when she is warm and among her Mexican and expat friends.

It’s an experiment of great significance for her, not just a trip to the beach ...

Like me, Christina gets cold very easily. Her family home is in New Hampshire. She has been staying there with her parents since her neck surgery in January. Although technically it is still summer, already she bundles up in the daytime and routinely sleeps with heating pads and hot water bottles.

Christina bought a ticket to Mexico today. She leaves in less than a month for San Pancho, a village in the state of Nayarit. You may remember me saying that I met her there. She has spent the past few winters in San Pancho and has some friends there who will help her out by providing occasional meals or doing errands that would be difficult for her.

Christina has an incurable, progressive, painful condition that she spends the majority of her days and nights trying to manage … Although the isometric exercises and yoga she does—when her hyper mobile joints and chronic fatigue allow—do help, little by little EDS is claiming her ability to live a normal life. Already it is difficult for her to walk or to drive, hard to digest her food or to sleep, and challenging to play with her young nieces or to keep pace with friends her age. She now has trouble doing even simple things: opening the refrigerator, turning a door handle, reaching for items, holding her head up.