Life’s Living Conversation

Riding my mobility scooter up the paved path, along the Ashokan Reservoir. Gorgeous here in the Mid Hudson Valley, with the Catskill Mountains encircling this body of water.  So many monarch butterflies fluttering in the breeze, over the water. Knowing that this is a nesting place for bald eagles, I am hoping to see a bald eagle, the totem animal that has meant the most to me in my dream life, and in my waking world. But not wanting to exercise expectation. And he comes. An adolescent, gracing my eyes and the skies with his presence. It is Yom Kippur, a fast day, the day of atonement, where we pray to be forgiven, to forgive, to forgive oneself which for me this year has been Paramount, and to be sealed in the “Book of Life.”

I lost my dog last Saturday, on Shabbes Tshuva. The holy Sabbath of our return to our essence, to the G-d presence.  Return again, return again, return to the light of your soul. So hard to let go of a beloved friend after 13 years. So loyal and protective, so smart and loving! I felt him slip away into the universe. From almost no determinable breath but still warm, to losing the warmth of life, and becoming cool to the touch. What an honor and a blessing to be able to have my hands on his body, in his fur, as he crossed the threshold.

So my grief has been deep, I am grateful for our new kittens in our lives who are helping me heal.

And yesterday was the autumnal equinox. Striving for balance. Reaffirming myself to the work I have yet to complete in this lifetime. No more fog of sadness and disability. Time to rally, time to write, time to work.

Although I always try to stay positive and optimistic, there are times that life is hard and unforgiving, and I forgive myself for feeling the strain of living. Remembering life is a great gift! And our challenges are chosen by us to overcome in this school called earth.

I converse with nature, as I have often said, life is a living conversation with a responsive universe!

Butterflies for transformation, as the Choctaw tradition teaches. They seem so delicate, but are strong enough to fly to Mexico from the US! I can learn so much from the butterfly!

No longer Just Caterpillar. She has blossomed from her Chrysalis.  Have I? I feel a transformation. Where once I was just Catapillar, and wrote a poem about it.  

Just Caterpillar

Forget about the one day transformation

The ability for emergence in flight

The nectar drinking, egg laying, flutter breezing freedom

You, in all your fuzzy potential

With nowhere to go

Crunching leaves, and crawling belly down

Are just Caterpillar

 

Now spread your wings and trust that the breeze will carry you in the right direction, where you need to go. Trust that even in your delicateness, you are sturdy enough to embark on this journey! That is a renewed faith. Always praying for healing for self and others, trusting the unfolding, and now recognizing that only I can do my work. Only you can do your work. Nobody is going to do it for me or you. As Rabbi Tarfon in the fourth century said, “The work is not for you to finish, but neither are you exempt from trying”.

And here is a great work that has been all encompassing in my life, as you may know, I have been struggling with multiple sclerosis for 22 years. My prayer is to heal completely, and my faith is strong! I am on a new medication called Ocrevice. It is an infusion that has potential to not only halt disease progression but possibly to alleviate symptoms as well. But my great hope of course is to reclaim lost functioning and I think through stem cell treatment that will be possible, but it  is a relatively new medical technology, and remains to be seen. Recently somebody asked me, if you stayed just where you are In your disability without further disease progression, could you live with that?

So it is making me take stock in where I am today. My walking is hampered. I often drag my right foot behind me because it is difficult to lift at the right knee, and also I have drop foot.  My equilibrium is off kilter. My right hand is quite compromised. But perhaps if it didn’t progress any further than this, I could live this way.., Though it would take greater acceptance of my handicap for me . So the answer to that question is yes, that would be a great blessing. Still I hold my deeper hope that I can hike again! Hiking for me was time to cry out to God, Hitbodedut, A term coined by Rabbi Nachman, the great grandson of the Bal Shem Tov, The founder of Chassidut. Hiking is my time to write poetry, and repeat it line for line as in the rhythm of my walking so that I remember the poem enabling me to recall it later as I transcribe it into the written word, and to share it as spoken word poetry. Taking stock in my work that I have yet to embark on. Glad to be writing, as always. Hope to go to open mic nights as I had done 25 years ago. And going to share ideas in a spoken forum in a new podcast called The Stream, with Dr. Carla Mazzeo. Stay tuned. Many good things to come. Now what will you do to further your journey? I look very forward to seeing!

Walk the walk

Unsteady

Been a tough weekend for mobility, but inspiriting!! Bernie Sanders stumped for Zephyr Teachout (running for the 19th congressional district.) At a local park in my town. I stood on the grass on this lovely late summer day,in the strong sun. After these 2 motivating progressive activist’s speeches, I realized walking would be a struggle, and it was, every step. My groovy leg brace, and olive wood walking stick, are little help in the face of body fatigue!

A day later, I sat on the grass again, in the strong sun, to watch my little boy’s first soccer game. Coaching myself: legs, engage, muscles, hold the body up, walk forward, take another step. “I think I can, I think I can…”

The question of “what is my life’s walk,” Comes to mind. Or more importantly, “how can I be of service in the world?” or as Jewish sages call it, Tikkun, or repair of the world. In the wise words of, Howard Thurman,

“Don’t ask what the world needs. Ask what makes you come alive, and go do it. Because what the world needs is people who have come alive.”

Answer: do what you love! So I am facilitating a dream group at the Center for Symbolic Studies, a new venue for me to host at, but I’ve been coming to the dream group at CSS, under the masterful tutelage of Stephen and Robin Larsen for 19 years! (Since I moved to the Mid-Hudson Valley.) Substitute facilitating when so honored.

Steve certified me to be a dream group facilitator 6 years in, of a direct lineage of teacher to student to Carl G. Jung, whose picture adorns his office, I have also had the great, good fortune of learning with, and being certified by master teacher and minister, Jeremy Taylor, of MIPD, and dream shaman, “the maestro”, Robert Moss.

And a further report on these symptoms caused by MS, the pain level in my right shoulder is high! wow- an electric pulse coursing through me, my right side of my jaw has joined the fray- maybe the Medical Marijuana takes the edge off? (see previous blog post: Medical Marijuana Today, I went for my first session of Qi Gong with a phenomenal woman, Helen B., who is offering this ancient knowledge as her service in the world

A little later in the season with the changing leaves in this pic.

. Though my body is limited in the motions it can make to gather the energy, let this serve as a baseline from which to only improve, and may this martial art bring renewal in mind, body, breath!.

Here is the event invite for the next dream-sharing circle I’m hosting: https://www.facebook.com/events/210249016059245/
If you find yourself in New Paltz, (which I highly recommend), Come do dream work with us!

Medical Marijuana

Oh, how I long to be a cannabis oil success story. I have my card! But, the medicine is very expensive. I have budgeted for my healing, and am trying to find the combination of healing products that will help me. In NYS, the 23rd state in the union to legalize medical marijuana, the program is very restrictive on the ailments that can obtain medical marijuana at the dispensaries. Similarly, the way to imbibe the products, as well as what is offered is limited.

There are 3 levels of THC to CBD oil concentrations. The high THC one is called Forte- it’s very nice, helps alleviate pain! The equal parts THC and CBD is called Balance. It is very good at releaving  stiffness and spasms in my calves. the low THC to CBD is called Dolce. (I’ve not tried this one- but I do find it interesting that in order for the CBD oil to be effective, the product does need to have some THC in it!) That is like the “whole plant” advocates, who feel the medicinal qualities of cannabis are best experienced through having all of the elements of the plant involved.

I would have gone to the dispensary today, but my son really didn’t want to, and short of bribing him with an ice cream, I decided I’d go this weekend, when he is out of town w/ his dad/ my estranged husband. In the last blog, that I reposted, I was grateful for partnership. But here I am, single parenting, because life is not a fairy tale. Our little boy is starting a new path this school year, at public school.

I am a Waldorf Early childhood educator. I did my training as a young woman in my early twenties. I also taught for 13 years- until the MS made it too difficult to meet the children’s needs. This is a big change for both of us, My older son had 3 more years of Waldorf, before he too transferred into public school. The transition from Waldorf early childhood (N & K), to public school first grade may be extreme. Not bad, nor too challenging, just ahead in academics (before, he got none.) I am so grateful for what he did gain! A freer childhood, with outdoor play, crafts, rhythm, and community as focus. But he is learning to read at home. Only yesterday, as we were driving in a much less liberal town than the one we hail from, he read his first sign! He said, “Mama, that says Trump!” Can never forget the election of 2016!

On that adventure, we swam in salt water in the rain! As above,so below. And today, it is so crisp out, that one can feel this other transition, heralding in new. And though the humidity is much less, and the temperature has gotten much cooler, my hampered walking/mobility/ equilibrium/shooting shoulder pain dis-ability might be worse? (or the same, which could have still had improvement.) Here is what’s happening- my right foot is dragging. Where as before I felt that wearing a foot brace was re-training my leg how to walk again- from body memory and the assistance, now I feel I need to be wearing it all the time. Which is good, because it is helping, but I certainly don’t want to become reliant on it. This is a custom made brace, fitted to my leg’s specifications, exactly.

I have been practicing incorporating the pain of my shoulder, in my movements. I’m striving to integrate the  hot sensation (see previous blog post: ‘Ability’) I must say, that the sensation is at times, overwhelming! But again, I am grateful for the medical marijuana for alleviating some of the discomfort.

 

The Day the Yellow  Died

Something shifted in me

When I found the light body, of the Monarch butterfly

Lying perfect in the garden

I put it in a silk, beaded box

He found an empty chrysalis in the grass under the swing set

What are the chances they are from the same life?

I heard the call of the wild turkey

Or a hunter’s turkey call, more likely

Andfound the deer slain by the road

She had been eating our carrot tops

So from the near frozen ground

We pulled, and then cooked the sweet roots as a tribute

The yellow pony died of old age, she was 45

Water, earth, wind, fire

Repost from tumblr: Mindfulness MS

The heavenly blue morning glories that graced our garden for so long; blossoms big as the child’s hand at their peak, have died with the first frost, leaving but a brown, tangly reminder.

In 1995, 25 years old, and though long realized (9 years of remissions and recurrences), the grief I experienced when my mother died was overwhelming, more than I could handle- though handle it I did, and thus started my MS journey. Grief was my trigger for an illness I was hereditarily and karmically destined for

I’ve been engaging in dream work- keeping a dream journal since I was in my late teens, and exploring dreams in groups since I was in my mid-twenties. I don’t always remember my dreams because I have a three and a half year old who wakes up with me, but also because I enjoy ‘medical marijuana’ which I feel is unparalled for stiffness and tremors, and helpful with pain. But the jury’s still out on how good it is for balance, and not so good for memory.

So, these days dreams are a real treat to me, and instruct me loudly. Torsos have made an appearance lately. It’s changed the way I walk, my posture maybe, and my awareness of my body. As I’ve written, I work out thrice weekly at the gym. I’ve been doing this for a year and a half. It is an activity I enjoy but falls short in replacing hiking. It is from strengthening my core that I know I can hold up my body. Wobbly as my legs may be, trees teach that a strong center can weather any storm.

My other healing modalities of late are Water! Lately, my fluid intake is minimal- two even one glass of water each day. But every health advisor- either in person or by the written word- advocates for drinking more, more, more! 8 glasses a day. So, I have very recently started trying to do just this. (Excuse me while I take this opportunity to hydrate.) I look forward to seeing if this is helpful and healing.

These days, mantra brings me closer to the Divine. Chanting keeps me present in the moment. I’ve been saying/singing, “Manorah ha makom ha zeh…” in Shefa Gold’s melody. These are the words Jacob speaks on the night he wrestles with the angel. “G-d was in this place and I did not know it.” Transpose ‘G-d’ to any life giving, awe-inspiring affirmation. I did not open myself up to the divine guidance in this moment.

And the other thing on my mind a lot of late is the beginning of the fire building season, I’m anticipating getting splinters in my hands from the wood stove all winter long! I’ve heated with wood for over 20 years now (from the wilds of New Mexico, the mountains of Colorado, Lake country in N.J, bear country in Mass., and now (home for 16 years, the Mid-Hudson Valley of New York State.) Fire warms, soothes, occasionally gives messages (see previous post), and is so very messy! The autumn wind keeps blowing the doors open and the sun is streaming in the kitchen windows. As a younger woman, I learned that life is like a river. Your past is that which flows away from you, your future is that which flows towards you, and you are standing in the water.

And so I walk to the stream on the side of our house. It is my physical therapy. Drop foot, walking stick, and balance issues aside, I am setting myself the goal of walking in an M.S. walk on May 4, 2014. By that time, in my sterling imagination, I should be capable, competent, healed of all mobility issues and this illness that manages to challenge me immensely. The terrain is uneven, rocky. The fallen leaves have make it slippery and slick, but the water is cool, flowing from yesterday’s rains, and musical, and here stand I. HiNeni

 

Twilight

The sun crosses the sky, earth rolls away from the sun

Like tulips openning and closing in day and dark

I open and close

Because she is so impersonal, ama d’a alah, the Great Mother

Through her fire, she renews the garment world each night

I breathe in, she breathes out

Grasping the copper vessel from my hands

Like a shadow-fox

Slipping between sound, and the smell of spilt ceremony tea

She is the Queen in the field, lighting the altar candle

A yellow warbler flies in the temple window

A stone heart lays hidden in the soft moss

Growing stars, and florets, and clover

The blue- expansive sky

The illuminating, deeply familiar dream of the black spider

In this place, in a velvet chair, in her infernal grace

The wakeful world has presence

I sit in her door way, the mouth covered with leaves

Trees in the wind creak- like an openning door

by, Yiskah Koock

 

Ability

MF MS 10

It starts like an electric shock boring into my right shoulder, like a bolt of lightning! The pain is intense, electrifying! And then it passes, washing over me like a hot rushing wave. Like a chilling release. I bear it bare it, grit my teeth, brace myself. Or I rub my right shoulder vigorously, and thanks to my dear friend / spiritual advisor,  I know to move my arm more, move my body, be as water.

Now it’s the time of the 2016 Summer Olympics in Rio. I haven’t been watching it, but when I do see a news brief, or a link to an article on the phone , I really want to pause and look at, and honor the strength of the athletes, the balance, grace, and grit, of those  who are competing. The Best of the Best. Ability, not dis-abled (very disempowering word.) I think maybe I should pay more attention to the Special Olympics, and not allow, “I can’t” in the door. I think I can, I think I can. Whenever I’m at the gym on the elliptical and see the Olympics on the TV before me (or any sports, for that matter) , I feel re-ignited to push myself more, because I must!

MS (emmes) means truth in Hebrew. I limp down the hall, lose my balance, drop glasses, and I can no longer type or write, eat or cut with my once dominant right hand. So I really feel the MS has evolved from RR MS, Relapsing Remitting, to Secondary Progressive MS. Whereas, I used to have such severe symptoms such as optic neuritis, seeing through an icy veil, losing the hearing in my right ear, losing the feeling in my hands and feet and torso, as well as other skin stuff -tingling and the’ phantom itch traveling around my arms, hands, collar bone, and back, the side of my face palseying, holding a grimace, to dizzying vertigo when I move my head too quickly, and the debilitating fatigue that sometimes accompanies me. Each of these symptoms would last six to eight weeks, and then mostly abate. It was a really hard road to travel, those first 15 years.. But now, I don’t seem to get those exacerbations, thank goodness, though my walking is compromised. I walk with a wooden walking stick, a ‘staff’, as it has been named, or a purple aluminum cane. And now, I wear my groovy new custom made, foot and ankle brace. Made to my body’s very specifications!

Oh, but did I used to walk! I was a hiker! I’ve hiked in the Wilds of the Colorado Rocky Mountains, California forests, and by the seas- both Pacific and Atlantic. New England forests, New Mexico mountains, the Hudson Valley woodlands, many many many walks. It was on these  hikes that I would write, speak, and memorize poetry. That was my time to cleave to the divine- devetkut hashem. Cry out to God, converse with the universe- so, God time, creativity time, physical activity time, inspiration time. I was once called, “Pride Walker”, by a master of movement and drama. Now that is a name I am glad to be called!

My neurologist will not change my MS designation from RRMS to Secondary Progressive MS. This is likely because the health insurance companies will refuse to pay for the medications with that title of disease. So tell me, what is a person with secondary progressive MS supposed to do then?
Again, left to the universe , I need to ask myself, is my faith so strong that I truly know that God will heal me? Or rather, through my body, G-d can shine G-d’s healing light. Send your emissaries, Most High one- mayachorai Raphael! I’ve put the healing Hebrew words to a lovely Lakota melody:  Ana Elna R’fanala- rfua  sh’layma. (a complete and total healing- body, soul, and spirit.

I’ve felt that these past twenty years of illness, and from earliest sensation and memory , of the body’s indelible art of being an instruments of the divine, and I also know that I need to take an active role in my own healing. so I work out at the gym, and I try to eat well, though I’m not on any particular diet: raw, vegetarian, gluten free, dairy free or otherwise. And I know, that my body has the innate ability to heal itself from any imbalance. So now, I’m doing the ondamed machine, ever grateful to the healers who are offering this to me. Ondamed. Is a biofeedback machine that tansmits electro-magnetic energy to my body, in the hopes that that will trigger such a reaction in myself that will bring about healing!

Here I am, ‘Hineni’, still hopeful, still believing, but I’m not really waiting- I’m just living, and sometimes I’m damned frustrated- . Still I’m smiling. As I sometimes say, I’m grateful even for the challenges. Every morning, when we thank G-d for restoring our soul to our body, we say, “abundant is your faithfulness.” “Raba Emunahtecha!” If G-d has faith in me, then shouldn’t I have faith in my body’s ability to heal!

 

Thank the Path

Hiking the back woods, an odd thing happened.I realized, that though I’ve walked these paths a thousand times before-Nothing looked familiar, and though I knew where I must be, I had no idea where I was.Maybe I was seeing with new eyes, as was suggested, but I think that everything- bush, tree, flower, stone, was not the same as it had ever been before! All was changed, an is continuously changing- as am I, as are you! This is not the same rose your father gave you at graduation, or that you carried down the aisle in your sister’s wedding, or that blossomed on the bedside, filling the room with its essence, the morning you mother passed away.

This rose presents itself to you! Touch its gentle petals, breathe deeply its life scent, see this loiving being burning in its divinity! I thank G-d, who illuminates my path. Those who hold me up along the sometimes overgrown and convoluted way. And the very path itself! The decomposing leaves pressed in mud, the bright orange eft scurrying away from dtopping acorns, the tiny spotted toad leaping onto my hand, and off again. The mushrooms that open as flowers, and the flowers that turn to sticky burrs. All this is new, and now, and me- honored here.

by, Yiskah Koock