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In the several years I have been away from this blog, my life has changed completely. I no longer teach yoga and am now a full time caregiver to my son with late stage Lyme disease. I am restarting this blog as part of a 30 day Writing through Grief project. I will be posting some of my writing and poetry as part of the program. I am looking forward to writing consistently again as it is incredibly healing and empowering for me, and helps me hear my inner self speak. I always learn so much about myself and life when I write.

Here is a poem I wrote recently about my son’s weekly IV treatments, and hanging out at the clinic with the other patients. The clinic where my son goes for treatment primarily treats cancer patients.

 

difficult IV

Infusion day

There is no way to look bad ass

under these faultering

flickering lights

that cast my face in a pale shade of green.

Beauty is beside the point here.

We all look ghoulish, just one step away from undone,

even the ones who sport straight white teeth and spray tans.

 

I did not invite these people to my disease.

I did not send out invitations to their failing parts-

this one a kidney, that one a pancreas, that other one a lung.

Such odd company to keep,

a brotherhood of bodies

that have betrayed each of us

in ways too intimate to speak of.

 

We exchange nods and knowing looks

as the needles push in

breaching the thinnest barriers of skin,

the penetration so public,

exposing small ropes of blue and green snaking their way up arms

and around hands.

 

In the bright red container

where the used needles go

the DNA mingles and merges in random ways

Here, the staff might say to us , this is as close as it will ever get to sex.

 

We size up each other’s chances and

mark time as the hours chase one other around the clock,

making small talk awkward

as any one night stand,

speed dating for the terminal.

 

 

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What if you were more than your physical body- your muscles, your senses,  your bones?

And, what if you were more than your actions, your accomplishments, your achievements?

How about your feelings, your connections to other people, your relationships? What if you were more than those?

Lastly, imagine that you were more than your thoughts, your perceptions, your judgments?

What if all of it went away? Who, or what, would you be then?

These are questions I pose to my yoga students all the time. And they think they get it- yes, I am More than all of this.  I thought I did too, I knew the right answer- if you take it all away, what I am is pure consciousness, pure awareness. 

I knew the right answer, in my brain. And having a sense of knowing something can be helpful because it points you in the right direction. But, but….knowing is not the same as direct experience.

Recently I had one of those direct experiences of yoga that turned my world upside down, again.  I had a much deeper experience of my mind/body connection than I had previously had. After this profound experience,  I am so much more humble toward the practice of yoga, toward what is actually possible. Once again, I feel like an absolute beginner.

Matt Sanford is paraplegic, and he is a yoga teacher. He teaches that it is possible to do yoga poses without moving your muscles, which is very contradictory to the way yoga is typically understood and practiced. I recently took a training with him, and began to understand what practicing yoga from the inside out might be like.

Imagine practicing half moon without moving your muscles, or teaching it to someone who is in a wheelchair, How on earth would you do it? The way I had always approached teaching it in the past was like this: find the best physical adaptation of the pose that you can, using props, the chair, the wall. This can be helpful, but its a very limited way to approach adapting yoga, because what you end up getting is purely the physical look of the pose, which is very different from the experience of half moon, and is basically exercise. What if I want to practice or teach an experience- the experience of freedom in half moon pose, for example? Or the experience of complete openness and expansiveness in wheel pose? How can I experience that without moving, or help my student, who can’t move their muscles, have that experience? Turns out that that is the right question to ask when teaching adaptive students with any kind of physical challenge.

The possibilities are endless. Citing Iyengar’s teaching, upon which his teaching is based,  Matthew taught that prana follows consciousness, so where you put your attention, your energy will flow there. If I want to experience freedom, what do I put my attention on?

In the workshop, we helped a group of wheelchair users onto the floor. Spending most of their time in the chair, the wheelchair users expressed that that can be limiting for them, so one of the things we did was to safely assist them in transferring to the floor. So now you have a student safely supported on a mat. The next thing we did was to pull hard on their hands and feet, stretching them out way past where they could get to on their own. The expressions of spaciousness, joy, freedom on their faces were what you often observe in students who skillfully practice half-moon pose. Matthew also mentioned this pose as an expression of tadasana with arms extended overhead. For students who can neither stand nor reach their hands overhead, this is a way for them to have the physical experience of the pose- grounded through the feet, extended and open through the torso, and expansive through the arms and head. And the energetic experience of integration and wholeness.

How do you put into words an experience of integration and wholeness? When I did these practices myself, which was the first part of the workshop before we started working with students, it was one of the most demanding and challenging yoga practices I have ever done. I didn’t move my muscles much, but the level of concentration and focus it took to be present in every moment was beyond anything I had done in a yoga class. I kept wanting to focus on my muscles, and Matthew kept guiding us back to our inner experience of the pose, where our energy was flowing (or not), how every micro movement we made influenced our energy flow, and how awareness and energy united as one produces a felt, experienced sense of integration and wholeness.

I have been re-inspired and re-ignited in my practice and teaching of yoga. Thank you, Matt Sanford and the staff at Mind body Solutions for your skillful and heartfelt teaching.

To learn more about Matthew Sanford and Mind Body Solutions, go here:

www.mindbodysolutions.org

This is amazing insight around disability and ability from a man who has ALS and who has also practiced yoga.

Dis Ease Diary

Sometimes, the choices presented by ALS’s complexity are overwhelming. This past couple of weeks have presented this reality, and while it is not been difficult to write, it has been difficult to write in a way that might effectively communicate the complexity at hand. This is my latest attempt, and if a little bit of anger peeks through, I hope you will be forgiving and know how hard I tried.

I just finished Until I Say Goodbye by Susan Spencer – Wendel, a journalist from South Palm Beach, Florida. In 2011, she was diagnosed with ALS. She is brave, with chutzpah and bravado, and that most human of desires to remain independent, to choose her own path even as ALS paves the road ahead of her. I get this attitude. It is incredibly difficult to make space for dependence in our lives, especially when we are used to the independence…

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There is a part of me that is untouched by pain, and that is what keeps me moving forward on the really difficult days.

I can feel this part of me, I can sense that its there, I know it and have always known it.  This part of me- call it what you want- keeps me asking questions, looking for answers as if my life depended on it,  keeps me reaching out toward any point of light I can find.  This whole part of me keeps looking for other things that are expressions of wholeness: an amazing poem, an inspiring yoga class, my dog when he is curled up on my lap, plants unfolding new growth, a child’s determination in the face of incredible odds, a kindness expressed in the midst of cruelty.

While I struggle with every other aspect of faith, and that is happening all the time, I keep coming back to this part of me that absolutely will not give up, no matter how much I want to .  When you experience a lot of pain in life, bitterness and despair are very seductive.

Yet, this whole part of me will not let me give up. Its made of sterner stuff than the rest of me.

 

Larry Levis muses on this in his poem “The Quilt” :

He had stopped believing in the goodness of the world. -Henry James

I think it is all light at the end, I think it is air.

Those fields we drove past, turning to mud in April,

Those oaks with snow still roosting in them. Towns so small

Their entire economy suffered if a boy, late at night,

Stole the bar’s only pool cue,

In one of them, you bought an old quilt, which, fraying

Still seemed to hold the sun, especially in one

Bright corner, made from what they had available in yellow

in 1897. It reminded me of laughter, of you. And some woman

whose faith in the goodness of the world was

Stubborn, sewed it in. “There now,” she might as well

Have said, as if in answer to the snow, which was

Merciless. “There now,” she seemed to say, to

Both of us. “Here’s this patch of yellow. One field gone

Entirely into light. Good bye…” We had become such artists

At saying good-bye; it made me wince to look at it.

Something at the edge of the mouth, something familiar

That makes the mouth turn down. An adjustment.

It made me wince to have to agree with her there, too.

To say the day, itself, the fields, each thread

She had to sew in the poor light of 1897,

were simply gifts. Because she must be dead now, &

Anonymous, I think she had a birthmark on her cheek;

I think she disliked Woodrow Wilson and the war;

And if she outlived one dull husband, I think she

Still grew, out of spite and habit, flowers to give away.

If laughter is adult, and adjustment to loss,

I think she could laugh at the worst. When I think of you both,

I think of that one sqaure of light in her quilt,

Of women, stubborn, believing in the goodness of the world.

How next year, driving past this place, which I have seen

for years, & steadily, through the worst weather, when

the black of the Amish buggies made the snaow seem whiter,

I won’t even have to look up.

I will wince and agree with you both, & past the farms

Abandoned to moonlight, past one late fire burning beside

A field, the flame rising up against the night

To take its one solitary breath, even I

Will be a believer.

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I have been having an ongoing conversation with my shadow side about pain for the past 2 weeks. It’s been a very long, drawn out conversation in which I have had to dig way down into lots of things besides the sensation of pain: negativity, suppression of feelings and energy, entitlement, and despair, to name a few. Once the ball of yarn started unraveling, it unraveled fast and furiously! The universe has also been giving me so many opportunities to confront pain recently that I have been practicing, practicing, practicing…

So here is a snapshot of what that conversation looked like:

Me:  OK Pain, I get that I have been taking you personally, and feeling like you are out to get me from our last conversation. I am starting to understand that this is nothing personal, that you don’t have a vendetta toward my family.  I guess where I am now is questioning why some people-including our family- seem to get so much more than others, that there entire lives are spent facing and fighting with you.It’s the fairness idea. Even though I know it doesn’t happen that way, I still want the distribution of pain to be “fair.”

Pain: Hmmm. Makes sense, I don’t make judgments about  fair or not fair when I visit people, I just appear when the conditions are right.  Like night follows day when the timing is right. I’m just a physical law, like gravity. In a physical body when things are awry, I show up.

Me: Why the hell would we be designed to experience more than our “fair share?” Why isn’t there a way to rerout pain when it goes beyond its usefulness as a warning, like a circuit breaker that would flip when the system gets overloaded?

Pain: I didn’t design the system. I don’t know.

Me:  I won’t get into “who” designed you and why, that is another discussion entirely. I will ask,  how can you bring so much suffering to the world and not know why you are doing it and what your purpose is?

Pain:  I will say it again, I am a force, like gravity, that responds to a stimulus when the conditions are right. I have no moral or ethical judgments or intentions when it comes to doing my job.

Me: Pain as an impersonal force is a really hard idea for me to get my head around. I guess I always had the idea that when people were having pain it was because they somehow earned it, but I see now that that’s not true.  I believed the Universe was just and that it unfolded in a harmonious fashion, because for most of my life it was that way for me, never mind other people. Karma made sense when it was an abstract concept.  Now that I live with you day in and day out, I don’t believe that anymore. It seems like there is randomness. At this point I don’t believe that there is a cosmic arbiter of fairness and justice. You show up in our lives when the conditions are right, and its up to us to make sense of you and decide how we will respond to you in our own lives, and in the lives of those close to us.  End of story.

Pain: It seems like it would be easier to see it that way. The same holds true for my twin, Pleasure. Sometimes She shows up, sometimes I do, both of us come and go like the tides moving in and out on the shore. We give you the information you need at the time you need it.

That is where the conversation has ended for this round. I have a feeling there is still more to this conversation, and on a lighter note,  there is a tattoo idea emerging out of all of this!

I would really love to hear readers’ perspectives on this, and your experiences on skillfully working with pain, especially if you are working outside of the ideas about karma and God.

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In Yoga, 2 of the obstacles to freedom are attraction and aversion. I had an epiphany yesterday that I was having a lot of aversion to my experience of pain, specifically, watching people I love in pain and not being able to do anything to change the situation. There is pain, which it is natural to try to alleviate as best we can, and then there is our reaction to pain, which is often unconscious and also habitual.

It seems so justified to me to be annoyed, inconvenienced, and even outraged at the fact that this pain exists. So I decided to dig into this experience to see if I could learn anything more about how I am habitually responding, and also, what might be going on that I am not aware of.

So here is a conversation with my shadow- which is my current inability to  fully make room for pain in my experience. According to Jungian psychoanalytic theory, anything that I cannot accept in myself or others constitutes my shadow, and I will continually try to suppress it or deny it or distract myself from it, instead of acknowledging it and facing it head on.

Me:  Who the hell do you think you are, Pain? Why do you continually hang around here, making life miserable for everyone?

Pain: I’m here to do what the body is set up to do-make some noise when something isn’t right in the body. Just like breathing or sweating or peeing, I’m just a physiological function of the body.

Me: Couldn’t you give off a different kind of signal, something that wasn’t exhausting and unpleasant? Why does Pain have to hurt so much?  Why couldn’t it be like a signal that was hard to ignore, but not quite so difficult?

Pain: I don’t know.  I only do what I’m told by the brain.

Me: Oh a whole lot of good you are! Trying to shift off your responsibility.

Pain:  Interesting way to look at it. I respond to what the brain tells me. If you have a beef with that, take it up with the Brain.

Me: This feels like I am being shifted around to different departments at a company, with no one wanting to take responsibility for the situation.

Pain: I could see how you would see it that way. Don’t take it personally, I’m not out to get you. I’m trying to do the best I can to let you know something in your body or mind isn’t working well so you can do what you need to do to make it better. It’s not easy for me, everyone hates what I do, it’s like being a mortician or something. No one wants to hang out with me, and people run screaming when I show up. not a very fun job. How would you like to be Me?

Me: I wouldn’t, in a million years. I like to make people feel good.

I can see that this conversation is going to go on for a while, so I will end this part here and continue later. So far I have learned that I am very angry at Pain, and that I take Pain personally, 2 things I was not aware of before I had this dialogue.

 

 

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I love my work, I love my work, I LOVE my work. And, this morning it was so hard for me to walk out the door to go to my job that I love and leave my son home in pain. There was nothing I could do to make it better for him, this is just where he’s at right now with his health. It’s been going on a long time, and I don’t know when it will end.  Before I found this work that I love I was a full time care provider for him and I felt good about that, I did everything I could to help him, took him to endless doctor’s visits, made the best possible food, and did everything I could to help his life be meaningful given his challenges.

He will be an adult next week, and although there is still a lot I can do for him, his health condition is out of my hands. I can’t fix it, I can’t make his problems go away, and life goes on. As a parent this is absolutely the hardest idea I have had to get my head around, and I still struggle with it mightily. I still have the very human desire to want to fix it, or at the very least, have someone or something to blame. In this circumstance, not only can I not fix it, there is no one to blame. This health problem  happened, and no one is at fault. For years I blamed myself, which is also a very human and maternal thing to do, because honestly it feels better to blame someone than to admit that sometimes suffering happens in this world and we have no one to point a finger at. But I have stopped blaming myself, and I am trying as best as I can to move on with my life and do what I am here to do.

I have a lot to offer out in the world,   and I need to be doing what I am gifted at and offering what I have to offer.  When I teach I feel absolutely unified with my purpose and have that sense of flow where time falls away.  And… and, it can still break my heart to set the boundary and admit that I can give my son only this much, and no more. To admit that I have limits, and there is no perfect solution in this situation, and to ask for help with what I cannot provide.  This is part of the normal process of  allowing him to grow up and grow into his own destiny, which I cannot know or grasp; I have to have faith that he will find his own purpose and meaning in being in this life, and although I can help him, I cannot do it for him. He has to do it on his own.

Here’s a poem on faith, which feels to me like the leap off the edge of what you think you know that parenting often is:

FAITH

I want to write about faith,
about the way the moon rises
over cold snow, night after night,

faithful even as it fades from fullness,
slowly becoming that last curving and impossible
sliver of light before the final darkness.

But I have no faith myself
I refuse it even the smallest entry.

Let this then, my small poem,
like a new moon, slender and barely open,
be the first prayer that opens me to faith.

— David Whyte

“The House of Belonging”

Many Rivers Press, 2007

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