Archive | November, 2011

Perform Action as Sacrifice

16 Nov

It has been longer than I intended since I wrote for the blog, but it has been a necessary time of silence for me.  I have been joyfully absorbed in all the family who have surrounded me with love (we have only had two nights without family in the guest room since the diagnosis, and more family is arriving today!  Such an outpouring of love.).  It has also been a time of deep contemplation for me, as I begin this journey, which path will I take?  How much will I share on the blog?  And why am I keeping a blog anyway?  I have a lot to say today.

Before I get into the heart of it, I want to be very clear in saying that I have decided to share my very sacred and personal spiritual journey through this blog, but I am not an evangelist.  I am not asking anyone to join any organization or believe in any doctrine or creed.  I have been harmed by such manipulative and arrogant forcefulness regarding god in my life and I refuse to take part in anything but love – and love is never forceful or judgmental. I regard myself as a mystic – by that I mean a person who is seeking direct, felt, intimate contact with the Divine Source of Life (which I sometimes refer to as God).  As a mystic, I regard myself as my own best authority on the Truth – and I regard each individual as the same for themselves.  I have spent the last 21 years seeking wisdom from all spiritual traditions – and I have found it and honored it in all of them.  I have found mysticism in ancient Greece, in Native American traditions, in the Kabala, in Catholicism, in the seeds of the Reformation, in Yoga, in Hinduism, all forms of Buddhism, Taoism, and from the Sufis of Islam. Wherever I find mystics I find them saying the same thing; that Love is all there is.  Of course, most of these traditions also have aspects I reject.  I hope that if you choose to follow my blog, or if you are a close friend or family member who can’t help but be exposed to my beliefs during this part of my journey, you will never feel oppressed, or judged or forced in any way.  I personally have a very strong belief in God, but I actually think that an atheist could follow an equally sacred path – it seems to me that there is enough sacredness self-evident in the Life-Force, in the beauty of Nature and in the amazing power we possess as Human Beings that if a pure secularist reflected similarly, we would likely end up journeying to the same destination.  I hope that you will consider sharing with me your own sources of wisdom, for I am certain I have more to learn from you than you could learn from me.

In the past two weeks since my diagnosis, and particularly since the “fear is sneaky” post where I wrote about total surrender, I have been struggling over a choice between two paths to take at this point in my life.  One path is to surrender to the evident end of my life, and use the time I have left to open to love & grace and bless my family & friends as much as I can, and to leave the best legacy I can muster.  This path would include many wondrous and worthwhile lessons, including how to connect with the Divine Source of Love even amidst circumstances that on the surface would seem to be unpleasant or even horrific. This first path would focus mainly on spiritual healing and growth, which would likely lengthen my time on earth and certainly make it more joyful.

The second path I have been considering has risen from a conviction I feel in my heart that I am being called to heal this ALS completely, on both the spiritual and physical levels.  As you can imagine, this conviction has been a bit intimidating to me – after all, I am just a REGULAR person!  The conviction has come to me, however, during times of deep meditation and prayer when I have felt very very close to my Divine Source and could hear her guidance very clearly (not like the Bill Cosby sketch about Noah hearing the booming voice of God, but from a very trustworthy and calm inner source of knowing that I have cultivated and followed safely in the past).  In my prayerful times of listening for guidance, I feel that this is a genuine choice – either path would be OK for me to take.  As I said, however, I feel called to the second path.

My mind has raised several points of hesitation around choosing the second path.  First, I am concerned that such a bold declaration will expose my family and friends to a great hope that I cannot guarantee I will fulfill.  What if I pursue this path without reaching a place of total healing?  Will I hurt my loved ones more, will I cause them to doubt the sacred power I believe is real and thereby keep them from its source of comfort?  I could not bear this thought.  In contemplating this, however, I was reminded of a conversation that takes place between the god Krishna and the warrior Arjuna in the Bhagavad-Gita.  Arjuna is on the battlefield of a civil war, and he shrinks from his warrior duty to take action against his kinsmen & countrymen.  Krishna appears before him to help him find his right path.  In the third teaching of this text, on Discipline of Action, Krishna tells Arjuna:

Earlier I taught the twofold

basis of good in this world –

for philosophers, disciplined knowledge;

for men of discipline, action.


A man cannot escape the force

of action by abstaining from actions;

he does not attain success

just by renunciation.


No one exists even for an instant

without performing action;

however unwilling, every being is forced

to act by the qualities of nature.


When his senses are controlled

but he keeps recalling

sense objects with his mind,

he is a self-deluded hypocrite.


When he controls his senses

with his mind and engages in the discipline

of action with his faculties of action,

detachment sets him apart.


Perform necessary action;

it is more powerful than inaction;

without action you even fail

to sustain your own body.


Action imprisons the world

unless it is done as sacrifice;

freed from attachment, Arjuna,

perform action as sacrifice!

— (The Bhagavad-Gita, translated by Barbara Stoler Miller, stanzas 3-9)


No matter which path I take, wisdom tells me to take action without attachment to the outcome.  Surrendering to the Divine Source of Love, and embracing what it serves up on my path does not equal inaction.  Surrender to God is not the same as relinquishing my power – in fact, surrender to God is the surest path to realizing and manifesting the power of the Divine Source that wishes to act through us.  Being detached does not mean living without heart.  It means boldly following your heart, but offering your actions as a gift, without attachment to their outcome.  So, I intend to follow the second path, seeking to create total healing, but I will offer every action and thought as a gift to the world, as an example of the beauty and peace of a life lived in surrender, and I will remain detached from the final outcome.  If you are someone who is going to read my blog, support me in prayer, or walk beside me as a friend, I hope you will find your own way to believe in my mission, but detach from the outcome.

My heart has also offered a point of hesitation around the second path.  There is something that seems far too selfish about asking people to pray for my healing.  There are so many people suffering far more than me in the world who deserve our prayer, attention and resources.  Right here in Arkansas, there are people every day who do not have enough food.  Why would I seek to heal my own insignificant suffering before theirs?  I just don’t think it works that way.  When I sought to pray and listen for guidance on this, I got a rather intimidating answer.  First, that my healing would be less selfish if I would be willing to share my honest journey with the world (thus the blog).  And second, that I should focus my path on pursuing a healing that can help everyone in the world heal from ALS.  In the Native American teachings, there is a phrase “mitakeye oyasin” which means “we are one” and that whatever happens to you, happens to me and whatever happens to me, happens to you. We are all in this together, as it should be. This means not only that if I have ALS, we all share in this experience, but if I can demonstrate a path to healing ALS it will be available to all of us.  This is my greatest wish.  After receiving this guidance, I consulted the Shaman I have been working with and asked her to check in with my Spirit Guides about my prognosis.  Interestingly, she described the same choice I had sensed between the first and second paths. She also heard that if I choose the second path to total healing, then my motivation must be selfless, as an offering to the world.  If my first priority remains to offer this to the world (not to have longer on earth with Jack & John and all my beloveds), then my Spirit Guides say that 100% healing is possible.  As you can imagine, I needed a few days to consider whether I was up to this or not.  For most of my journey, I have been very private about my spiritual beliefs, and fairly allergic to bold declarations about certainty in knowing what God wants of us.  There is sacredness in mystery, in silence, and in finding your own path.  What I have come to is that I will offer my journey as honestly as possible.  I will share my moments of fear, doubt, and confusion.  I will admit that I have no definite assurance of the outcome.  Yet I think you will see that if nothing else, I will be able to offer you the overflowing joy and hope for myself & the world that is pouring into me by choosing this path over all the others open to me.

I know some of you will be tempted to worry for me because I am taking this path.  Remember my first letter and my request that we banish fear.  I hope it will reassure you to know that I am not retreating into a hermit cave, just waiting for God to magically grant me total health through the pure force of my belief.  I remain here in my body, and I will care for it tenderly with the best medical care I can find.  I have an appointment at the Leahy Clinic and at Mass-General in Boston, with their ALS specialists.  I am getting regular massage and energy medicine treatments.  I have a cadre of friends who are food scientists who are helping me to research the optimal approach to nutrition & supplements that will nourish my nervous system.  My dear husband is reading medical journals in his spare time.  I will consider clinical trials as I become aware of them.  I am using psychotherapy to support my mental health.  I am disciplining the schedule of my days to include time for prayer, meditation, contemplation & rest. I do not limit my healing to coming about through a purely mystical miracle of God where I will wake up suddenly healed.  If my spirit would like to lead me to a clinical trial that shows great promise, this is just as Holy.  I will be praying for all the doctors and researchers involved with ALS to join my quest of healing ALS, 100%, for the world.  You have probably heard the joke about the man who dies in a flood on the roof of his house, even though he prayed to God for a miracle.  He gets before God and asks, “why didn’t you save me?”  And God points out that he sent an evacuation warning, which the man ignored because God would save him.  He sent a boat, which the main had refused because God would save him.  He had even sent a helicopter which the man had refused because he was waiting for God.  That is not going to be me!

I am very fortunate to have a Granny that has demonstrated spiritual healing many times in her life.  Most recently, in October 2010, she was hospitalized with a blood sugar over 300 and with 100s of pulmonary embolisms clotting her lungs.  The doctors told us she had a 1% chance to live.  I was very lucky to be able to spend a week in the hospital with her, and watch her listen to the doctors give their warnings and prescriptions, without ever feeling that their predictions or beliefs had to apply to her.  She boldly told them that she would take the medicines they gave her for now, but that she firmly intended to be off of them within a few months.  She told them she believed in the power of prayer even as she checked her blood sugar daily, and implemented dramatic dietary changes.  She was fully recovered, 30 pounds lighter and off all medications by March, a feat that all the doctors had told her was impossible.  In remembering my time with her that week, I am most struck by the absolute sense of peace and lack of fear that was palpable in her hospital room.  How lucky am I???  My Granny’s very close friend had this to say when she heard about my diagnosis with ALS: “We are 100% with you—all of you. I don’t know what ALS is, but I can come up with my own metaphysical counterpart: All Loving Spirit. “Perfect God-perfect man” is all there is! ”

I am embracing this name for ALS (All Loving Spirit).  As I quoted at the end of my first letter, God is All-in-All.  This means that God is even in ALS as All Loving Spirit.  It is a mystery to be revealed, but I do not believe that ALS has joined my journey to harm me. It is here to teach me, to uncover my sacred calling in this lifetime, and to bring a very great source of hope to the world.  Because I regard myself as a part of the unlimited power and presence of God, I do not recognize ALS as having any power over me.  Rather, I see it in my mind as a benevolent entity that is walking beside me on this part of my journey.  I do not “have” ALS.  I am visited by it, I am offering it my love, acceptance and compassion, and I am inviting it to leave as soon as its purpose in my life / in the world is complete.  Wouldn’t it be amazing if the purpose of this mysterious disease, whose cause and mechanism is not known to modern science, which has no effective medical treatment or cures, turned out to be here among us in order to demonstrate our true nature as powerful beings who can overcome fear and disease?  I think it’s worth the risk of undertaking this experiment, this path – with pure, innocent, unbridled faith.

Now that I have chosen my path for this moment, and shared it with you, I hope you will consider helping me.  First, if you or anyone you know are praying for me, please pray first that this journey of mine will be for the benefit of the earth, that any blessings that come to me will be equally available to everyone affected, with the goal of bringing about an end to ALS for everyone everywhere.  I think that if this is possible, it will require a shift in consciousness that is larger than what one person can achieve.  We jointly believe in the destructive power of ALS and we must jointly overcome this belief as we claim the power of healing.  This is not only an exercise in prayer, but must be an exercise of disciplined thought, and there is plenty of room for people from all religious, spiritual, philosophical and secular traditions to participate.  If you hear the letters ALS, think “All Loving Spirit, Love is all there is”. Or some hopeful version of this that works for you.  Second, please share the blog with someone you know from another country or another tradition who would be open to hearing about my quest.  I have the goal that we will have people praying for the end of ALS in every country, from every religious, spiritual, philosophical and secular tradition.  I plan to add a page to the blog where we can keep track of this (soon!).  Third, if you have a source of wisdom or inspiration that you would like to quote from your tradition that echoes the sentiment that “God is All-in-All”, that “Love is all there is”, that “the source of Divine Love lies within us” or “that we are called to free ourselves from fear” –then please share that on the blog.  I am going to create a dedicated space for this soon. Fourth, as soon as I can figure out the technology, I am going to create a space where others with ALS can share their picture and first name, so that they can be specifically added to our disciplined thoughts and prayers. Finally, because knowing that so many people are supporting my quest is so comforting and so powerful, I hope you will leave a short comment on this blog post, and I hope you will subscribe to my blog (email address below).  I promise I will never share those email addresses for any other purpose – it is only for you to get notification when there is a new post.

I want to close by offering the contents of a word document that I have been keeping for over a decade, whenever I found a powerful quote that might help me find my calling.  I looked at it today and found it strikingly relevant:


The path arose around me until I was on walking in the direction I was meant to go. This is how it is when we are following our call.  (Florence Nightingale)


Only YOU limit yourself. No one else does that without your permission. Follow your dreams wherever they may lead.


“Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.” ~ Isa. 41: 10


My bounty is boundless as the sea,

My love as deep; the more I give to thee,

The more I have, for both are infinite. ~ William Shakespeare Romeo and Juliet, II : 2


Anything is one of a million paths.  Therefore you must

always keep in mind that a path is only a path; if you feel you should

not follow it, you must not stay with it under any conditions.  To have

such clarity you must lead a disciplined life.  Only then will you know

that any path is only a path, and there is no affront, to oneself or to

others, in dropping it if that is what your heart tells you to do;.  But

your decision to keep on the path or to leave it must be free of fear or


I warn you.  Look at every path closely and deliberately.

Try it as many times as you think necessary.  Then ask yourself, and

yourself alone, one question.  This question is one that only a very old

man asks.  My benefactor told me about it once when I was young, and my

blood was too vigorous for me to understand it.  Now I do understand it.

I will tell you what it is:  Does this path have a heart?

All paths are the same:  they lead nowhere.  They are paths

going through the bush, or into the bush.  In my own life I could say I

have traversed long, long paths, but I am not anywhere.  My benefactor’s

question has meaning now.  Does this path have a heart?  If it does, the

path is good; if it doesn’t, it is of no use.

Both paths lead nowhere; but one has a heart; the other

doesn’t.  One makes for a joyful journey; as long as you follow it, your

one with it.  The other will make you curse your life.  One makes you

strong; the other weakens you.

The trouble is that nobody asks the question; and when a man

finally realizes that he has taken a path without a heart, the path is

ready to kill him.  At that point very few men can stop to deliberate,

and leave the path.

A path without heart is never enjoyable.  You have to work

hard even to take it.  On the other hand, a path with heart is easy; it

does not make you work at liking it.

For me there is only the traveling on the paths that have

heart, on any path that may have heart.  There is travel and the only

worthwhile challenge is to traverse its full length.

And there I travel looking, looking. breathlessly.

~ Don Juan, A Yaqui Warrior, as told to Carlos Castaneda


Choosing Love

9 Nov

Hard to believe that it is less than two weeks since we learned that Kim has ALS. The days last much longer when you are deeply immersed in each moment. Every touch, smell, and casual glance has more meaning and there is such solace in being absorbed in those moments that we hunger for them when our minds drift. When my mind does wander it tends to land on either regret or fear. Fear and regret are very real obstacles that we process every day.

A few days ago Kim was deeply engaged in conversation with my brother so I went outside with Jack and the rest of our visiting family to tend to some fall cleanup. As I was sweeping leaves out of the garage I uncovered a blue paint spill on the floor. I knew exactly what it was from: a couple years ago Kim had saved a set of outdoor table and chairs from some combination of trash and thrift stores and was refinishing them for our back deck. I noticed she had not covered the floor as well as I would have liked and of course paint spilled out on to the garage floor. I never said anything at the time but every time I saw that paint spill I felt a pang of annoyance.

This time I was so grateful that the paint spill was still there and it reminded me of how artistic and creative Kim is. I was transported back to all of Kim’s other thrift store projects that dotted our home and how fond Kim is of pointing them out to guest. I loved that paint spill, and then cried for all the time I spent wasted on being annoyed about it. My life is filled with memories and moments that have a loving side to the story, but so often I turned away from it and let myself carry those memories around with regret or even anger. I used to think that emotions like fear and regret were simply assigned to moments, and then we had to live with them that way. As if some spiritual bureaucrat was sitting behind a desk handing out emotions based on a checklist, “your wife spilled coffee grounds on the counter again, that will be 10 minutes of quiet brooding, followed by an undercurrent of general annoyance…next!” But it turns out that by really attending to moments like this you get to choose how you feel about them – what a revelation that is.

Kim was told at one point that there is a path through this experience that includes making ALS her friend. I have to admit that when I first heard that I thought it was the stupidest and most callous thing I ever heard. But then I watched Kim turn her whole being towards this bright light of love. Just as my instinct was to circle the wagons she opened herself up bigger and bigger until there was room in her being for everything to have a place. Even the fear is not banished by rejecting it – she simply lets it pass through her, experiencing it, acknowledging its presence and then inviting it to move on. Someday I will write more about how we do that together because I have learned so much from her.  — John

Fear is Sneaky

3 Nov

Was it only yesterday I posted a link to the blog on Facebook?  According to my husband, there are already over 500 hits on the letter.  And I had already emailed the letter to at least 100.  What is happening?  I am so humbled by the response from so many people who have written to me and my family.  I am in awe myself from the words that have come out of my mouth and the full heart, peace and strength I feel from the miraculous grace that has been given to me.  I feel compelled to continue to share this with you, although I truly do not understand why I have been chosen for this blessing.

There is one very peculiar feeling that I want to tell you about.  I am done trying to heal myself.  This is not a hopeless statement, it comes from the complete sense of peace I feel, that there is nothing I need to heal.  Don’t get me wrong – I hope I do heal on the physical level!  It’s just that I’ve finally realized that it won’t come from me (small m = material ego self) if it comes.  All I will seek is surrender, and a closer, more continuous connection with the source of this Peace.  My Soul and Divine Mind have given me this path – who am I to know if it will be best for Me and my family if my physical body heals or not? I would have never chosen ALS and yet it is clearly the most amazing blessing I have ever experienced in my life.  (I have so much to tell about this and my fingers can only type so fast! I can’t even tell you 1/10th of it.)

I am only one week since diagnosis today, and already my relationship with my family has changed forever.  Why do we wait for this to so openly embrace one another, appreciate one another, and share ourselves without reserve? I already had good, close relationships with my husband, brother, parents, & step parents.  But the week we’ve shared has been no holds barred love.  I have been enjoying myself!?  I have this image of me and all the souls I am on this journey with – we are sitting around a table together between our last incarnation and this one.  We are recounting our last adventure the same way I have after skiing down a crazy cliff in Utah and being 100% thrilled, ready to do it again.  There we are at the table, and someone says “so who wants to go through the crazy ordeal this time that will open us all up to love and help us remember again?” – and I jump up and say “ooh ooh ooh I will! Let me do it this time!  And this time, let’s do it even bigger!” Of course, I have no idea if this could have happened.  I believe in past lives, but I’m not psychic or anything.  I don’t think it matters whether I’m right. What fascinates me is the human capacity to face what I am facing and feel the joy, peace, safety and even bizarre enthusiasm that I am feeling.  Does it matter whether God is real? Whether it is my Soul speaking to me or just the highest capacity of my physical brain/mind?  To me it doesn’t.  I believe in the realness of what I am feeling.  I call that source of inspiration and power “Divine”, but I feel it coming from within my self – the same self I had with me last month and all my life.  The same Human self that is available to you to draw from.  Don’t wait!

I came face to face with fear this morning.  It is so sneaky.  Jack woke up crying for me in the night.  He would not take his Bubbie (grandma) who was sleeping in his room.  He would not take John.  I hauled my sorry old body there as fast as it would wobble and took him in the rocker – “mommy’s here”.  And it got me. “I’m here now but I won’t always be here.  There will be a day you call for me and I won’t be here, and what will daddy have to go through?”  As I thought these things, I lied to myself and said that they were not fears, they were legitimately sad thoughts in response to the facts I am facing.  I am entitled to grieve.  I am entitled to a good long life and my son is entitled to my protection.  As you can imagine, I couldn’t finish the lullaby without a few tears, which I did my best to hide.

This is what good husbands are for.  When I finished putting Jack down, John comforted my sobs and reminded me that I am here now, I took care of Jack today. I came back to the present moment and remembered – entitlement is a negative instinct.  It is one I am working hard to relinquish, because it breeds the rejection of our sacred path – which only separates us from love.  The power of acceptance is that it puts us directly in contact with the source of love that gave us our sacred path and is waiting for us in this real and present moment.  I don’t think the problem came from the fear that ALS might kill me.  I mean, some fear is actually real and meant to protect us.  If you meet a lion in the jungle, you should be afraid.  I am holding open the possibility of physical healing, but I also accept the experience of ALS.  The problem came from my fear that there would be a moment when there wasn’t enough safety & peace for my boys.  I overcame it this morning when I decided to imagine them strong and brave, and full of enough love to survive this storm together.  And in the morning light this alternative seems much more likely given what I have witnessed this week.  The capacity of my husband to jump on this train with me would truly stun you.  His courage and strength makes my own seem paltry.  He is so steadfast. I am so blessed. – Kim