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Zen & The Art Of Alzheimer's
Posted: Wednesday, October 28, 2015 5:51 AM
Joined: 7/24/2015
Posts: 3020

When one is diagnosed with dementia, it can hit like a ton of bricks. We made it through testing and diagnosis, we researched and found out that we are on the slow road to death...we process our emotions. As the disease takes our brain and makes tasks difficult, it is easy to get lost in the minutia of it all. But somewhere in all that is our soul.

Thanks to the disease, it becomes increasingly difficult for me to hang onto my spirituality, and the word "practice," in spiritual practice, takes on an ever deepening meaning.

This thread is my effort to retain some element of spirituality in the disease/end of life process. If it offends, I am sorry.


Day 1

 Zen Proverb - The Obstacle IS The Path

Today's mantra, "The Obstacle IS The Path."

The obstacle is Alzheimer's and the dementia it causes and all that entails from difficulty completing tasks, to how others perceive dementia. The obstacle is, within the decreasing ability of my brain, how to retain and maintain what is the essence of who I am, my spirituality.

I think of walking meditation. Walking meditation is where you walk mindful of each step, mindful of the ground beneath your feet, mindful of your breathing as you walk, mindful of the weather, mindful of the environment. It helps to quiet the mind, and the discipline is meant to quiet the ego. When I became sick and walking was hard to do, it became about being able to complete each step. As walking becomes more difficult, I have to be mindful of even more...balance, how to move each muscle, remembering how to place my feet. In this way, dementia can increase mindfulness in walking meditation. A hidden gift.

As I go through my day and face difficulty after difficulty and challenge after challenge, the mantra "The Obstacle IS The Path," will be my ever present companion.


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Posted: Wednesday, October 28, 2015 8:21 AM
Joined: 3/7/2012
Posts: 1747


When-ever my beloved saw a dandelion struggling to emerge / to come through a small crack on a concrete sidewalk, he would stop always and contemplate it, in reverence and awe... And smile. A most beautiful smile. "This is Tao Te Ching," he would say.
If he saw tiny little ants busily struggling and courageously moving forward to go from one side of our Zen garden to the other side, he would contemplate this activity for hours on end.... And smile.

He was a philosopher by training. A thinker and an artist of life. His life was a long quest for wisdom and spirituality and inspirations.
I can still see him sitting on a rock, under a tree, on a hill in Delphi... pondering.
The Chuang -tzu, The Lao-tzu,The Teachings of Don Juan, Persian Poets, Rodin, Matisse, Henry Moore. And so many, many others. For lack of better words, may he forgive me for trying to label him, he was kind of "ancient-renaissance-existential-phenomenology" man, living in a post-modern world.
He had many passions... Smells, tastes, sounds, visuals, feelings, and thoughts.
His passions; they remained alive and well until the end. In spite of a shrinking cortex, I believe it was his intuitive intelligence (the very essence of his being) that kept him going...
He was a beautiful dandelion in the path.
I miss him terribly.

Posted: Wednesday, October 28, 2015 1:24 PM
Joined: 7/24/2015
Posts: 3020

I am so sorry he is no longer here, your love of him comes through in all your writings. He and I would have gotten along fabulously. It is rare to find another who knows, or likes, Castaneda's work. We probably would have gabbed on and on about all that stuff.

I am sort of fond of Thich Nhat Hanh these days. I just love the way he is always in that space...and every word he utters, brings one to that space too. I also like Erhard, his language is so perfect that there is no room for anyone to ever misunderstand what he is saying. I can't remember who else I had liked.

It has been a real struggle to maintain a sense of spirituality as the disease has progressed. I *THRIVE* there. In the body, however, in trying to deal with doctors, in the minutia of life, I shrink and feel yuk...I don't like living there, and I don't want to live there. Finding a way back to the spiritual hasn't been easy, and is still not perfected...hence, the word practice takes on a new meaning and depth.

One of the hard parts of this disease is we NEED others to cue us, to say something, that will help us make connections to things we know...because we still know them, just have trouble accessing much is lost to me. Being sick you sort of drop out of your normal life and friends slowly drop away too...eventually I had no one to talk spiritual stuff with and it went mostly absent. Until a while back someone called and reminded me of things I thought I had forgotten and I was encouraged to find a way to hold onto this for myself.

Anyways, no wonder you and I get along.

Posted: Thursday, October 29, 2015 10:45 AM
Joined: 7/24/2015
Posts: 3020

Day 2

Daily Zen - Impermanence


There is a wonderful Buddhist practice, that I never thought much of. That is, until I was diagnosed with dementia, a fatal progression of brain failure. That is the spiritual practice known as Sand Mandalas.   The teacher and student monks spend days, painstakingly, pouring sand into these wonderful, huge, beautifully intricate, mandalas. When they are finally done, the teacher monk surveys his masterpiece, and in the single swipe of his hand, wipes across it, destroying it. The lesson is one of “impermanence.

When I think of the destruction going on in my brain, that is the image that comes to mind…the hand of my soul, wiping it all away…as if to say, “there now, you are free to go.”




Posted: Friday, October 30, 2015 4:17 AM
Joined: 7/24/2015
Posts: 3020

Day 3

 Daily Zen - Popular Kiirtan - Baba Nam Kevalam

In short, a Kiirtan is the singing of a mantra.  The mantra used for this kiirtan is Baba Nam Kevalam.

Which, broken down, means as follows: "Baba" means, "my most beloved one;" "Nam" means "to identify with," and "Kevalam" means "only."  Put together in a phrase, it means "My most beloved one (G-d) is the only one."  And is thought of or idealized to mean, "Everywhere I look, in everything I hear, feel, see, taste and smell, in all things everything I perceive is that one Supreme Consciousness."

So the Baba Nam Kevalam Kiirtan, that is popular among yoga practitioners, is the singing of a mantra aloud reminding us of our connection to the Supreme Being. Doing this generates feelings of bliss and is said to prepare the mind for meditation. It can be done anywhere, any time, but the best time is just before meditation.

Kiirtan has many benefits. I find that it helps lift my spirits, and it re-centers me on my spiritual practice...which these days I can use all the help I can get.


Posted: Saturday, October 31, 2015 9:11 AM
Joined: 7/24/2015
Posts: 3020

Day 4

Daily Zen - Letting Go


Sometimes we can become attached to things, to ideas, to ways of being, to ways we used to be.  This is generally considered in Buddhism to be the root of suffering.  So the practice people undertake is one of letting go. 

When one has Alzheimer's/dementia, one is going to lose a great many things one is likely very attached to, up to and including one's life.  This is a hard process, but one that I feel is important to undertake (for myself), in order to come to terms with my upcoming journey. 

Below is a meditation from Castaneda that helps me to remember what the elements of my spiritual practice are, and why I am doing them.

It goes:

"I am already given to the power that rules my fate.

I cling to nothing so I will have nothing to defend.

I have no thoughts so I will see.

I fear nothing so I will remember myself.

Detached and at ease, I will dart past the eagle, free."


The elements of my practice, and why I do them:

* To let go of my control over how things turn out;

* To reduce, minimize, and otherwise get rid of ego;

* To silence my inner thoughts (meditation);

* To remove my sense of self; and

* That I am ultimately working to liberate myself from the birth-death cycle of reincarnation. 

It will likely mean different things to different people, that is just what it means to me.

People have a hard time letting go of their suffering. Out of a fear of the unknown, they prefer suffering that is familiar.”

― Thích Nhất Hạnh



Posted: Sunday, November 1, 2015 5:59 AM
Joined: 7/24/2015
Posts: 3020

Day 5

Daily Zen - The Buddha's 5 Remembrances

I use the Buddha's 5 Remembrances as a meditation.  In particular, I use it when I have trouble achieving inner silence during meditation, I find it helps to have something to focus on. 

The 5 Remembrances help to remind us that we cannot take our bodies with us, and to help us let go of our attachment to them, to help free the spirit from the body.

The 5 Remembrances are: 

"I am of the nature to grow old.  There is no way to escape growing old.

I am of the nature to have ill health.  There is no way to escape ill health.

I am of the nature to die.  There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.  There is no way to escape being separated from them.

My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground upon which I stand."


Posted: Monday, November 2, 2015 5:19 AM
Joined: 7/24/2015
Posts: 3020

Day 6

Daily Zen - Smile

There is a sign by where I sleep, put there so when I wake up it is the first thing I see, that simply says, "smile."  By the sign is a couple of sticks and rocks, elements of nature.

No, I ordinarily do wake up smiling, all on my own.  However, after my Alzheimer's dementia progressed to a certain point, I began waking up a bit confused and disorientated to where I am.  This sign helps not only to re-orient me to me, but also re-orients me to my spiritual practice which has always been very important to me. 

The practice of "smile" comes from Thich Nhat Hanh, and this is what he has to say about it:

Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.

― Thích Nhất Hạnh 

Smile, breathe and go slowly.”

― Thích Nhất Hạnh

Waking up this morning, I smile. Twenty-four brand new hours are before me. I vow to live fully in each moment and to look at all beings with eyes of compassion.”

― Thích Nhất Hạnh



Posted: Monday, November 2, 2015 5:12 PM
Joined: 11/1/2014
Posts: 127

Thank you. This thread made me smile. It made me cry. It made me think. Thank you.
Posted: Monday, November 2, 2015 6:15 PM
Joined: 7/24/2015
Posts: 3020

You are most welcome. Namaste.

The plan is for a new post every day, for as long as I am able...

Posted: Tuesday, November 3, 2015 4:43 AM
Joined: 7/24/2015
Posts: 3020

Day 7

Daily Zen - Courage

"Courage doesn't always roar.

Sometime courage is the little voice

at the end of the day that says,

"I'll try again tomorrow.""

Every night, for the last few years, I have said this quietly aloud to myself as I go to bed at night...and this helped me be ok with the transition into being my own caregiver. 

Sometimes people I meet and talk to think that I have my life is easy, and rarely do they realize the life behind my words. 

When my health was failing and I ought medical care, I had one request of doctor - just keep me functioning enough to care for my mom.  As my brain was also failing I was susceptible poor doctor care, and couldn't figure out how to access the care I needed.  At one point in the journey I was losing my ability to walk.  My legs didn't work right, I often had to crawl, and my gait was very embarrassing.  This was a very low point in my life because I also had to find a way to accept that I wasn't going to be able to access the medical care or help I needed, and forgive myself for what my brain could no longer figure out, and just find ways to cope the best I could as my heart was sinking and I was losing hope.    

Others had spouses, or family.   My neighbor who had cancer, had tons of support.  I was by myself...and I was long pat being physically able to revive any old friendships.  I didn't want anyone to see me like this anyways.  If it wasn't for my old dog needing to be let out to pee, or my mom, I probably wouldn't have gotten out of bed again.  *Something* had to give, but nothing did.  Eventually I thought, I will just say to myself what I wish a friend would say...and what I needed most for someone to  say to me, is that we will try again tomorrow.  So I started the practice of saying this quote, out loud, to myself as I lay down to sleep. 

When I could no longer remember the lines, it was one of the first signs I made for myself.  I lay it on my bed, so that I have to handle it in order to get into bed.  This way I will be sure not to forget. 

Courage isn't being right, or knowing how to have it all...courage can fail, and be all wrong...but it is in the willingness to keep getting back up, no matter how hard it is, and try yet again. 

It might seem a silly trick, but it works.

Today's Mantra - It is ok, I will try again tomorrow.




Posted: Wednesday, November 4, 2015 6:42 AM
Joined: 7/24/2015
Posts: 3020

Day 8

Daily Zen - Be Good To Yourself

The two truths about dementia and Alzheimer's are they are both 1) progressive; and 2) fatal.  Being diagnosed with a terminal illness is difficult to process emotionally, even in the best of circumstances.  Often times there is little or no emotional support for the person diagnosed in coming to terms with this.  Sometimes even we can know something is really very wrong, but we are lied to and told we are ok...this may further sink and disconnect us from being able to process this through.

One thing that helps one swallow the bad stuff, is by being good to one's self.  I *love* this saying by Mary Anne Radmacher, I say it to myself every morning before I put my morning notebook away:   

speak quietly to yourself & promise there will be better days.

whisper gently to yourself and provide assurance that you really are extending your best effort.

console your bruised and tender spirit with reminders of many other successes.

offer comfort in practical and tangible ways - as if you were encouraging your dearest friend.

recognize that on certain days the greatest grace is that the day is over and you get to close your eyes. tomorrow comes more brightly...

― Mary Anne Radmacher   





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Posted: Thursday, November 5, 2015 6:53 AM
Joined: 7/24/2015
Posts: 3020

Day 9

Daily Zen - The Art of Just Breathing

There is a breathing practice that I do of simply being aware that I am breathing.  Whatever else in the world that is going on, I am breathing.  In, and out. 

Many try to add more to it than just that, but more is not needed, for it is at its heart an exercise in awareness.

Whatever you are doing, you are doing that AND breathing.  You could be washing dishes AND breathing.  Driving AND breathing.  Walking AND breathing.  Watching TV AND breathing. 


For caregivers it could be that their loved one is repetitively asking a question...they are asking this question AND you are breathing. 

For people with the disease you could be struggling with something, you are struggling AND breathing.  Which may or may not be difficult to do.

For anyone, people may be arguing...they are arguing AND you are breathing. 

Doing this, it creates a gap in your awareness that allows you to get in front of any reactions you might have...and gives you a split second to perhaps make different decisions in how to respond.    


It has other fun purposes too, for those who practice it. 

For what it is worth.




Posted: Thursday, November 5, 2015 10:12 AM
Joined: 9/12/2013
Posts: 3608

Sun and W/E - beautiful and HELPFUL.

I practiced mindfulness for 25 years and the teachings you discuss bring back that sense of peacefulness.

I became Orthodox after diagnosis and often experience the church service  as a "healing machine" - now realize it is a group meditation, repeated chants and prayers in unison, in different "tones" and all the icons and incense, the little building with golden windows...

Having been raised with Christian background based on sinfulness, and the idea of 100% forgiveness and turning other cheek, I suffered from a lack of common sense in some dangerous situations, zero boundaries, a sense of never being able to live up to the Ideal.

 When one finds a spiritual practice that suits them (including none) it is a huge help. One of the parts of Orthodoxy is "Fresh Start" - no matter how rotten I behaved or felt day before, when waking it is a fresh start, again and again - and the Path is not expected to have a destination or achievement, but a way to handle Life.

I also find it to my advantage to look at ALZ as part of my path, part of cycle of life, and a means to still be of use. 

 SUN, sharing this here is wonderful and thank you for bringing Mindfulness back into my consciousness.

Posted: Thursday, November 5, 2015 12:01 PM
Joined: 7/24/2015
Posts: 3020


alz+ wrote:
SUN, sharing this here is wonderful and thank you for bringing Mindfulness back into my consciousness.



You are most welcome.

Years ago in this disease process, I was really feeling the absence of my spiritual practice...and it is as though I lost the way to access it.  Like it was hidden in rooms, I no longer had the key too.  I have a friend who I used to speak to a lot and we talked endlessly deep on spiritual matters, and when he became involved with someone we talked a few times a year.  And I began to notice, that when he and I talked, it would all come I had never lost it. 

I agonized over how to get it back in my daily life for years, because on my own I just couldn't access it on my own. 

In the spirit of somehow always ending up having to be my own caregiver, I thought...f'it...Towanda! I will just make myself do it...kicking and screaming if I have to.  I figure, and hope, that the more I make myself focus on this each day...that I might get some of this back. 

I can't believe it took me years to come up with the idea, but I am as grateful for the idea as you are. 

Posted: Friday, November 6, 2015 3:59 AM
Joined: 7/24/2015
Posts: 3020

Day 10

Daily Zen -  Koans

Koans are sort of like puzzles or riddles that students meditate on, with the hope of achieving the answer.

My favorite koan is this one...


"The wild geese do not intend to cast their reflection.

The water has no mind to receive their image."



Posted: Sunday, November 8, 2015 6:46 AM
Joined: 7/24/2015
Posts: 3020

Day 11

Daily Zen - Meditation

Had an MRI the other night, and was reminded again about the importance of meditation...and thought I would make that a topic.  However, my words are not very good this weekend, so I find myself struggling to say the things about it that I want to share...please bear with me.

People use meditation in all kinds of ways...each way has its own set of benefits.  Some just stop and quiet themselves.  Some try to quiet their internal dialog.  The other night, I remembered that I used to use it to slow my brain wave pattern into the theta wave.  The theta brain wave frequency is the frequency you normally achieve during deep sleep. 

I count my remembering at all, a huge thing to celebrate and I consider this thread instrumental in why it happened at all...however, I can scarcely recall why I used to do that. 

Sitting in the MRI, that felt like 5 minutes, I went deep, deep, deep into meditation.  At first I thought, it was amazing because I hadn't been able to achieve that for years...and then I recalled.  Each time the tech would talk to me, I a few seconds to remember the old me...the way things used to be...and that this once had been sooo important to me. 

We live, waking, in alpha or beta brain wave frequencies. In sleep we hit theta and delta brain wave frequencies.  The reason it is important to learn to reach the slower levels manually, is because that is where change can be made.  Many people find it difficult to change things about their lives, that they want to change, hypnosis has some effect, but it is because it uses the lower brain wave levels.  We can achieve this ourselves. 

It helps to have access to a biofeedback machine that registers your brain wave frequency in order to know when you are there, and help you identify its feel, and be more able to repeat it on your own. 

I had wanted to say something about how you could do it...but this is all I could muster.  There is a disease ravaging my brain, hope you will forgive me.


Posted: Sunday, November 8, 2015 7:01 AM
Joined: 7/24/2015
Posts: 3020

Day 12 

Daily Zen - You Are A Unique Creative And Precious Being Unto Yourself 

It is Sunday now, and still my words are not working all that well, so my post is a bit not what I had hoped to make it.  Please forgive.

We are beautiful, light-filled, emotional, thinking, feeling, souls...and through some magic we became separate from each other as we came into human form.  We can never truly know what another thinks, or know how sad feels to another, or even know what color they truly see when they see the blue sky.  This inherent separation causes us pain, that we rarely acknowledge.  In the pain of separation, we may feel concerned for what others think of us, our feelings may be hurt, we may get angry, or maybe in that separation, we judge others...or we just simply react.  We forget that we are all one, and that on some level - the soul level - we all know and love each other.  Sometimes one's spiritual work is to try to re-remember this. 

But, if we find ourselves here on the internet, feeling hurt...thinking somehow that we are not the beautiful soul G-d created us to be, we may find ourselves in need of a bit of repair.  Or as I often say, licking our wounds.

Therefore, an important practice for our daily well being, on the internet, and especially around this disease where situations differ so insulate ourselves from letting this things knock us off our path.  I saw this graphic a while back, and since then it has been a part of my daily practice to say to myself as I get on the computer, and as I leave it: "I Will Not Compare Myself To Strangers On The Internet."

For what it is worth, you are beautiful as you are - be at peace.



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Posted: Monday, November 9, 2015 6:23 AM
Joined: 7/24/2015
Posts: 3020

Day 13

Daily Zen -  Accept Where You Are

I am a real believer of living powerfully in reality.  But, to do that, one must accept reality as it is.  And, to do that, one must not make it mean anything. 

Example, the sky is just blue.  It is not blue to offend you.  It is not blue to make you happy.  Blue doesn't inherently mean anything, it is just blue. And it is not orange, or green, or red.

This goes for your dementia, and this goes for your spiritual path.  Accepting where you are in things, not needing to make it more or less than what it is, not needing to make it mean anything...but just letting it be where you are at the moment and being ok with key to your happiness. 

It is also the key to living powerfully with the disease....and with the real reality of the disease, not necessarily with the "believed" reality of the disease.  

I don't know about you, but I don't mind the disease so much or what it has done to my life, near as much as what people "believe" about the disease in me...which I find I don't like much at all.  Which is a real conundrum for my spiritual practice, of how do I accept that I have become *that* to you...when I am not *that*? How do I live in the I am *that* to you...when I am not *that*?  And, perhaps more importantly, how do I protect myself from slipping into your view, and inadvertently become *that* if I allow you to see me as *that* which I am not? And, with the disease raging havoc in my brain, *how* do I keep those things sorted out? 

The first reaction of being confronted with another's false view of me, because of the diagnosis, is usually one of hey wait a minute, I am not that.  It never fails to cause me to feel removed from the situation.  Others think they are interacting with *that*, but really I am *this* - so it is not me that they are interacting with.  And I feel alone. 

When I can get some distance, I can take a deep breath and reflect a little, and realize that there is no way to change this but to change it by sharing the *this* that is really me.  The reality of me contradicts the illusion of what people think someone with the disease should be like.  But I am not the disease, I never was...I was always me, and I just happen to also have the disease.  It is a companion to my life, not unlike my beloved dog is.  It is something I have to learn to live with, and to become at peace with, and overcome the difficulties it presents me.

The next reaction I have is to form a plan of action, of how I am going to meet this, yet another difficulty - other's perceptions of what they believe the disease does. But in this forming of a plan of action, I am confronted again with the ravages of this disease and I struggle to make my brain work  - and I need it to work better, and faster...because I know I know this stuff, and I know I used to be able to do this stuff...and yet, here I am struggling. 

Again, I take a deep breath and with some distance, reflect.  And I meander the pathways in my brain, sometimes for days...until I return to the place I used to reside at...and accept.  To accept that this struggle is where I am at.  It is not more or less than what it is.  It doesn't mean anything about me.  It doesn't necessarily fit others beliefs, but it IS just what is.

And in accepting that this struggle is just where I am at right now, I come to compassion for my brain...and compassion for my dying body, and a deep love and appreciation for all it is still doing.  This experience acceptance, compassion, and the resulting peace transcends other's beliefs...leaving them distant muffled noises that are hard to make out.  And I am again centered where I thrive.

Until I venture out into the world again, and again I am confronted with another's belief about what the disease should be in me...and this starts all over again. 

Such is my path. 



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Posted: Monday, November 9, 2015 8:13 PM
Joined: 3/7/2012
Posts: 1747

I am

 that I am

 who I am

 what I am.

 I am

 an ongoing infinite present.

 The fullness of being.

 Embraced by the universe.


Posted: Tuesday, November 10, 2015 7:11 AM
Joined: 7/24/2015
Posts: 3020

Posted: Tuesday, November 10, 2015 7:55 AM
Joined: 7/24/2015
Posts: 3020

Day 14

Daily Zen -  Peace

"Peace.  It does not mean to be in a place where there is no noise, trouble, or hard work.  It means to be in the midst of those things and still be calm in your heart."

The other day I saw this graphic going around facebook, and in many ways it was exactly what I needed to hear that day.  You see, beyond my own hectic schedule of appointments, I care for my mom and my dog, but I also live with my daughter and granddaughter, whom I love dearly, but add an element of chaos, clutter, and noise, that with this disease just send me into a state of agitation that feels sickening and engulfing.  I am often seeking any breadcrumbs I can find to lead me out of that space, and this graphic did just that. 

It is funny to think of things like facebook as tools for our spiritual practice or growth, but things are really what you make of them.  And when you are looking for spiritual breadcrumbs, you will find them.  They used to say, "when the student is ready the teacher will appear," but it really means when a person is ready they open themselves and everything becomes a teacher of sorts, even facebook.

To be in the middle of all this noise, clutter, and chaos and still find and be in, and live from my center of peace and calm...used to be easier for me.  Now with the disease, with my increased sensitivity to movement, noise, and multiple things happening, makes this much harder to achieve...and something I have to be more intentional and purposeful about than before.

It helps, I have found, to achieve a state of peace and calm away from things.  And then create an image in your mind of that peace and calm, and try to hold that image for as long as you can while the noise and chaos is around you.  More importantly, it is vital to forgive yourself anytime you cannot maintain the inner peace and calm.  Retreat and try again.  It is why they call it a practice after all.  


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Posted: Wednesday, November 11, 2015 6:54 AM
Joined: 7/24/2015
Posts: 3020

Day 15

Daily Zen -  Beyond Right & Wrong

Today's zen is inspired by Rumi's quote:

"Beyond ideas of wrongdoing, and rightness, there is a field.  I'll meet you there."

I have always loved that quote. 

In life, people often do judgment.  They judge something to be right, and judge other things to be wrong.  This never made much sense to me, because things just are.  They are neither right nor wrong.  And they are both right and wrong at the same time, depending on how you look at them.  But always, things just are.  These things will continue to be, long after we with our judgments are gone.  So what were our judgments?  Just illusory creations that changes and limits the way people perceive things.  Because I valued awareness, and wanted as much of it as I could get, I never saw the point of altering or limiting my ability to perceive things.

Back then, the quote sang to me about meeting people in the space beyond judgment...where we are just two souls, from across the vastness come together. 

Now that I have dementia, and now that I deal with the stigma and the way people I encounter who treat me differently, I am left feeling always like a round peg in a world of square holes.  It can appear at times, to me, that my very existing is wrong.  People tell me that I shouldn't be able to talk so well.  I think, you have no idea how bad I talk now...or how good I used to talk...if you knew, you wouldn't say that.  They see me as ill-fitting and incongruent  to my diagnosis, rather than see me as the face of my the face of what my diagnosis has done, and not done, to me.  When I meet people, my existence is different than their belief.  Try as I might to share, they invariably hold fast to their belief.  And who am I to take from their beloved beliefs.  But still, to them, I am all wrong...and that leaves me feeling more alone than I am. 

Today, the quote means to me...I will meet you beyond the stigma and false beliefs. 

And may it be that one day, indeed, we can meet there.  Today's practice is to hold space there.

Much love.


Posted: Wednesday, November 11, 2015 11:44 AM
Joined: 3/7/2012
Posts: 1747

Sun, you are a splendor. You are a treasure to behold. You are enchanting music to my ears. Keep writing. Keep composing your music...We are listening.

Rumi said something like this: wean yourself from an embryo, to an infant, to a child, to a searcher after wisdom, to a hunter of more invisible game.

 My immortal beloved wrote on the side of the page of one of his philosophy books:

 "what is beyond wisdom?"

"Discernment," she said.

 "invisible game"...

 When I read recently those couple of words. Words of my beloved's heart and soul... my heart soared like a phoenix, with joy.



Posted: Thursday, November 12, 2015 5:36 AM
Joined: 7/24/2015
Posts: 3020

Awwwww, thanks. We all really are just walking each other home.
Posted: Thursday, November 12, 2015 6:13 AM
Joined: 7/24/2015
Posts: 3020

Day 16

Daily Zen -  Humor, Laughing IS Good For You

I saw this graphic on facebook the other day, and had to this is what I often feel like with people (doctors and workers) that I encounter.  Like yesterday, when the neurologist, in response to my poorly worded question (I had been trying to ask him how to slow this down, and he hadn't been understanding me, so I blurted out this question), "how do I keep from dying?"  He looked at me and said, point blank, "oh Alzheimer's doesn't kill you." In my mind, I am thinking, "are you f'ing kidding me? Did you really just say that?

Right then and there, I decided that the next topic would be humor, and the benefits of laughing. 

Sadly, I did not know how to respond to him in the moment (my brain is just not fast enough for that anymore)...which if it wasn't so tragic would be much funnier.  I really shouldn't be surprised anymore when this kind of stuff happens, since I have had years of really bizarre doctor behavior under my belt, but it never fails to take me off guard.  I often joke about going into stand up comedy, and since this diagnosis, I coin it as bad dementia humor. 

Like the other day when someone was saying how she was giving her female dog viagra, I couldn't help thinking that this is some seriously funny, and bad dementia humor.  Turns out it was completely legit.

We go through a lot of rough stuff in life.  When we hit the hard parts, we have two choices - to laugh or sink. 

In Buddhism, there is a concept of things already being..."so when a cup falls from a table and breaks, it was as though it was always broken.  When we see the unbroken cup, we consider that it will one day be broken.  So when it breaks, we say, 'ah, but of course, it was always that way.'"  This is paraphrased (poorly) of course.  So when we hit those hard moments in life, when we are confronted with the rough stuff, we can think, "but of course, it was always this way."

I like that view, however metaphorical it is, because it allows me to see the humor in things rather than tripping over them.

Also, laughing is good for you.  It releases chemicals in your body that rejuvenate and heal you.  There is even a laughing yoga practice (I kid you not)...also very funny, bad dementia humor...but is where you go and just laugh for like an hour.  I am not sure I am keen on all that, but the idea does make me smile.

So yesterday at the neurologist, I felt very much like the old lady in the graphic with her tp glasses seeing through his bs...and was glad I had seen the graphic, so I had that image in my mind. 

While I will no longer be able to figure out *why* doctors sometimes do things like that, I can still laugh about it and move on.  I take it as a divine message of them standing up and answering whether they are the doctor for me or not, and I think, "ah, thank you for letting me know, and in such a funny way, that you are not the one for me."  

On the good note, I got all my tests to see if it is anything that will be fixable...which is all I really needed from him anyways...unless, of course, it IS something fixable...then I will have to suck it up and go back to him to fix it.  Maybe I will print the graphic and bring it with me if I have to go back, then he can laugh too when I call bs on him.  

My daughter and I laughed the whole way home.  Hopefully you can find something to laugh about today, and give yourself permission to enjoy that laugh. 


Sea Field
Posted: Thursday, November 12, 2015 8:25 AM
Joined: 8/5/2012
Posts: 1872

This thread is wonderful!  So very nourishing.

with deep appreciation,  Cynthia 

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Posted: Thursday, November 12, 2015 10:39 AM
Joined: 7/24/2015
Posts: 3020

Oh I love that, repaired with gold.  If only they could repair my brain the same way. 
Posted: Friday, November 13, 2015 7:51 AM
Joined: 7/24/2015
Posts: 3020

Day 17

Daily Zen - Positivity, Like Smiling, Just Do It

I don't have a picture for today, to try to find one would just get me lost wandering through the possibilities and I would likely not make my way back today. 

Thich Nhat Hanh tells us to smile, as a practice, and tweeking that I am applying that to positivity today. 

Even in the most ideal circumstances, when one has brain issues, one encounters a thousand negative messages a day.  From the many things we try to do, and cannot...from the struggle, and even sometimes from those around us and from the world at large.  We might not think of them or label them as negative per se, but they do accumulate and add up...even in the best circumstances.  

As the disease progresses, we become more sensitive to negativity...and less able to wash it off, and rise above it.  This is why, like the smiling practice, positivity may need to become a mindful practice that we do on offset the thousand negative messages we receive a day. 

If, for no other reason, be positive because those around you need it as much as you do.  Positivity breeds more positivity. 

There is always something in our lives that is good, no matter how bad things can get.  Search for that, find it, and focus on it.  You can even add that to things you say.  This went bad, but at least I still have this. If all else fails, you are still alive...and the sun still rises. 


Posted: Saturday, November 14, 2015 6:18 AM
Joined: 7/24/2015
Posts: 3020

Day 18

Daily Zen - Living In The Present

It is considered the point of many spiritual seeking and practices to be able to live in the present.  To be here now.  Many seek to quiet their internal dialog. We do it with long quiet walks, with personal work and reflection, with quieting and centering activities like yoga or meditation. 

One of the many great gifts of dementia and Alzheimer's, is as the brain's ability to store and process information diminishes, we are more and more only able to live in the present. In short, dementia achieves what spiritual seekers have sought. 

There is a peace and tranquility to it, especially if those around us can make it be ok.  Right now, the sun is shining with a light like summer, even though it is November and cold out.  The sun casts such a wonderful, yellow tinged light, and things today...everywhere my eyes looked...was so beautiful.  As though I had never seen beauty like this before.  And I think I shall never see anything so beautiful again.  But right now, is the most beautiful things my eyes have seen. 

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Posted: Monday, November 16, 2015 5:30 AM
Joined: 7/24/2015
Posts: 3020

Day 19

Daily Zen - Be Like Water

"Water gives life to the ten thousand things and does not strive.

It flows in places men reject and so it is like the Tao."

Tao Te Ching

This is one of the puzzles of the Tao (pronounced "daow") Te Ching.  Many meditate on the meaning of this. 

Another person wrote it like this: "The highest goodness is to be like water. Water benefits all the Ten Thousand Things, yet does not compete.  Water will go to the low places everyone despises and be content."

The concept of this of becoming like water and, I believe, being in harmony with the what is around you.


Posted: Monday, November 16, 2015 5:43 AM
Joined: 7/24/2015
Posts: 3020

Day 20

Daily Zen - What You Gain In Losing

From the PBS show, The Buddha

"There is no knowledge won, without sacrifice.

In order to gain must first lose everything."

Jane Hirshfield

When one is diagnosed with dementia, or Alzheimer's, one often feels like they just lost everything.  Indeed, we are told, and believe that we will lose the aspects that make us, us.  That we will lose our memories, our abilities, and even often our friends and loved ones. This can be a real challenge for those diagnosed to come to terms with.

At the same time, for those of us who have it, we often become aware of little gifts the disease brings us.  Like, staying in the present...something spiritual practitioners labor and strive for.  Or the ability to focus so intently on just one our ability to multitask goes away. 

But seldom do we realize, that the major goal of spiritual practice is to lose the self in order to gain enlightenment.  Even in the Tibetan Book Of The Dead, the very first spiritual "bardo," or spiritual test, we face in the afterlife is to completely give up self and merge back in with the cosmic consciousness...and it is only in failing this, in hanging onto self, that we are forced to reincarnate again...which Buddhists consider, inherently, to be be bound to the birth/death cycle which they call the Wheel of Time. 

So a hidden gift, perhaps a treasure even, for those of us with dementia/Alzheimer's who are on the spiritual path, is that we may inadvertently achieve this, though the loss of self. 

Posted: Tuesday, November 17, 2015 8:01 AM
Joined: 7/24/2015
Posts: 3020

Day 21

Daily Zen - Do Good Anyway

Today's topic comes from a quote from Mother Teresa, read so well and inspirationally in this video:

"People are unreasonable, illogical, and self-centered. Love them anyway.

If you do good, people will accuse you of ulterior motives. Do good anyway.

If you are successful, you win false friends and true enemies. Succeed anyway.

The good you do today will be forgotten tomorrow. Do good anyway.

Honesty and frankness make you vulnerable. Be honest and frank anyway.

People favor underdogs but follow only top dogs. Fight for some underdogs anyway.

What you spend years building may be destroyed overnight. Build anyway.

People really need help but may attack you if you help them. Help people anyway.

Give the world the best you've got and you'll get kicked in the teeth. Give the world the best you've got anyway."


When the road gets long, or hard...I like to listen to this video, because it reminds me of my spiritual path and how I have chosen to be in response to when others try to make my road longer or harder for me. It reminds me of my spiritual center...and restores me to that place, internally, where I thrive. 

All day long, every day, we each encounter numerous situations where (whether we realize it at the time or not) we are given a choice how to respond, and in what way to respond. 

While I used to think that no where did I encounter more discouragement than when I was involved with service to the community and various organizations trying to bring about positive change in the world.  I am now realizing that I receive even more discouragement for having been diagnosed with dementia and Alzheimer's, and in particular, for trying to live well with it. 

Although, I haven't quite sorted out (yet) why it is that the discouraging messages I often receive are so incongruous with my internal view of my abilities (and disabilities), but I think it has something to do with the stigma and negative view others carry of people with this disease.  Or perhaps it is because my living powerfully with this disease contradicts their view of how someone should live with the disease.  I am never really sure.  But I do know, that as the disease progresses, I am more susceptible and vulnerable to these negative and discouraging messages.

As I become more susceptible and vulnerable to negative and discouraging messages, I have to take a more active role in overcoming their affects within me...if I am to have any hope to overcome their negative impact.

I do this by first re-remembering that people rarely, if ever, realize just how they impact others...or that their words can have lasting negative effects.  I firmly believe that if people knew how they affected others, they would take greater care of the words they use. 

Then, I must re-remember me...and re-remember, and re-choose how I care to be in response to whatever the situation is.  This is why this video and quote.  Nothing brings me back quite like this lady's voice as she reads the words of this amazing quote, her voice adds something to it I can no longer find words for...but is just right somehow. 

May it do the same for you.


Posted: Tuesday, November 17, 2015 10:23 AM
Joined: 3/7/2012
Posts: 1747

Try not to get discouraged. You will not lose your power of being. You have within you the courage above every courage... Courage, my e-friend. Human encounters are, let us say, "tricky." There is a long road ahead. With boulders. Not a rose garden. Keep moving. Do not despair.

Paul Tillich wrote, "the courage to be is rooted in the God who appears when God has disappeared in the anxiety of doubt." You are, and you will remain, in the presence of the divine. 

Yes, sun, you are okay. You are a creation. A beautiful work of art, indeed.  

Posted: Wednesday, November 18, 2015 5:15 AM
Joined: 7/24/2015
Posts: 3020

Thank w/e, I really appreciate hearing that from you. Words like life jackets.