My Love

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My love,
the decades have been so
very good to us.
I am amazed in this time
that my love for you
is the constant in my world.

My love,
I am amazed that such a sensitive soul
has learned to be
such a fierce warrior
and has vowed to
fight for those who need protection.

My love,
I wish for you rest from this
crazy battlefield
upon which the enemy
is not always clear.
Time to be at ease
only makes you stronger in this valiant fight.

My love,
I see the reflection of your hands
gently holding my heart
after all this time and it swells with love.
No matter what craziness finds its
way into my world you
love me without judgment.

My love,
I so long to hear your words
whispered in my ear
when I lay down at night.
This distance keeps me from
feeling your embrace though I know it’s there.

My love,
you are my most mighty and enduring love.
Your warrior heart
And gentle way
reminds me in each moment
of why you have my heart.

1/17/18
To PJP

 

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How to Suffer Well

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“Train in taking and sending alternatively; put them on the breath” How to Be Sick:  A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard.

I used to joke in graduate school that in my study of existentialism taught me that life is suffering and you need to suck it up but my study of Buddhism taught me that life is suffering and be compassionate anyway.  My plan was to marry both.

I love the practice of Tonglen, that I was introduced to in the work of Pema Chodron.  Now there is a very specific way of practicing Tonglen but Pema talked about “on-the-spot” Tonglen and I found that I liked that a lot and try to practice it when I can.  The point of the specific practice, like any other practice, is to get it to become second nature to you so that when a situation arises, you have the skills.

Think about CPR.  You will probably never need it but if you do, you will remember the chest compressions should be 100 beats per minute because you have had to get re-certified every year.

Conventional wisdom, when it comes to relaxation, tells us to breathe in and think of concepts like peace, love, compassion, relaxation, a warm hug, etc and breathe out negativity, stress, fear, etc.  Tonglen actually teaches the opposite and it can be a bit counter-intuitive.  Let me give you an example I have used in the past.

I hate going to the dentist.  Hate is not strong enough of a word.  I had dental appointments as a kid like everyone else.  I also had two years of orthodontics.  I hated the orthodontist’s and that I think that’s when I developed so much anxiety about it.  I’ve had a lot of other dental work done and for me, there are few things worse.

When I had to get a bunch of dental work done while I was working for hospice, I “brought my patients with me”.  What?  Let me explain.  Hospice is pretty terrific at helping patients with both pain and suffering through the use of an amazing group of professionals, medication, volunteer support, etc.  But there is still so much pain and suffering involved in the dying process.

When I would go to the dentist, I would play music on my iPhone and I would focus on my breathing.  As feelings came up — anxiety, fear, physical pain, achiness in my neck, etc I would breathe it in.  I could imagine that my patients and their families might be feeling very similar things at that very moment and I would focus on being present to those experiences.

As I breathed out, I would focus on a warm, soft blanket, or the sound of my mother’s heart beat, or calm, relaxation, peace, etc.  And I would say, in my mind, if I am going to experience this anyway,  which apparently I was going to, let me experience it and give my patients a break.

To me this practice was similar to The Prayer of St Francis (Let me be light where there is dark, where there is despair let me sow hope, etc).  Did I really take any suffering away from any patient or any family member?  I don’t know.  But, it was my intention that there should be something positive that comes from my suffering.

And this I try to remind myself every day when I wake up in pain.  “Ok universe, if it is going to be one of those days, let my pain be for some benefit.  Let me have pain so my mom doesn’t.  Let me sit with these side effects hoping that it keeps someone else from having these side effects.  And even if it doesn’t, let me send out, in addition, the intention of comfort, relief, or solace.  For me, it helps give some meaning and purpose to  something that I cannot avoid, my own pain.  And who knows, maybe if there is such a thing as karma, I’ve helped someone else by sending out good will.

So today, I ask you:

  • What are you experiencing right now?
  • Can you imagine any one in the world having the same experience right here and right now?
  • Can you breathe in the pain, darkness, dis-ease, frustration, depression (whatever it may be)?
  • With your out breath, can you imagine exhaling something positive that another person could use?
  • It could be warmth on a cold night for homeless vets.  It could be deep, cleansing breath for an asthma patient.  Maybe the idea of a trusted teddy bear for a fearful child.

 

May you have ease and comfort in your life.  May the merit of all of the positive thoughts, feelings, and actions you have come back to you a thousand-fold.

 

 

Creating a Compassion Society Out of Suffering

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Thich Nhat Hanh opens his book No Mud, No Lotus with these words:  “In fact, the art of happiness is also the art of suffering well.  When we learn to acknowledge, embrace, and understand our suffering, we suffer much less.  Not only that, but we’re also able to go further into understanding, compassion, and joy for ourselves and for others.”

If you live with pain or disease Thich Nhat Hanh’s words are the cliff notes version to what you might learn in pain management or MBSR or CBT or even DBT.  Life is going to happen and suffering is your choice.  In the midst of chronic daily pain or especially in the midst of acute pain, I would want to punch someone for telling me that.  I wouldn’t do it but anger might take over how colored my view might be at the moment.  I remember saying to someone, in a very hateful manner, “meditation, that $%^ doesn’t work.”  And it wasn’t true.  It was just I was so deeply frustrated, anxious, in pain, and fearful that I wasn’t even treading water anymore.  I was drowning and it didn’t seem to matter to anyone.

The one thing that I have learned in the past six months is that we ask way to much of people who are ill and struggling.  What do I mean?  I think back to living on my own for my job and having no one around to stop at the grocery store because I was dehydrated or picking up a prescription that a doctor called in after hours of waiting and being in pain for days.  I remember sleepless nights because I was afraid I would not wake up for work the next morning, having no sick days and working in an unkind environment that had no flexibility for problems like that.  I would get so anxious, I would have 6 alarms set so that I would finally crawl out of bed.

And what about med changes?  I worked and got a higher degree and completed half of a second degree while living with chronic daily pain and the subsequent med changes.  Has a doctor ever had to get to work on time or “played well with others” after being put on 5 different meds or even adding one or two meds or taking one away?  Sometimes, you aren’t sure if the meds, the side effects, or the illness will kill you first?  Please hear me, I’m not saying that doctors are wrong in what they do.  I’m just not sure they maintain their compassion while doing it.  How can they?  A patient is going to scream out in pain when you reset their leg, but you still have to do it.  You end with a bit of a callous on your soul, in order to save your soul.

And all the things that people have suggested, (similar to things I will say in this blog), are tough to do when you are wondering how you are going to pay a bill, or what you can eat that won’t make you throw up, or losing a document at work, or feeling utterly alone in your misery.  They are tough to do when you don’t even have your basic needs met (Think Maslow).

Nhat Hanh says, “If, however, we are preoccupied with the fear and despair in us, we can’t help remove the suffering of others.  There is an art to suffering well.”  And that is what I am trying to learn how to do.  I have a disease that causes me to be in pain; that won’t change but I can live a lot better with it than I had been.

But all that worry and day to day stuff, my friends, all of that is suffering.  Well, they are all hassles and my interactions with those hassles (the fear, anxiety, fretting, etc) was suffering.  And much of it needless but given our society today, it is very much a real concern for so many people.  Why is it so tough for so many people to get disability?  Why do sick people have to fight with insurance companies?  Why do we have to move away from our communities and our families, are safety nets for things like work?  I am thinking back to another time, decades ago, when people who were ill were at home, when family and a community took care of people rather marginalized them?

I think back to when I grew up.  We lived in the same house as my land lady and when she was diagnosed with cancer and my family took care of it.  It was a labor of love because that’s what you do for others.  We helped with getting groceries, giving medication, feeding her, changing her, etc.  Her kids came to visit but they lived 45 minutes away and we were right there.  There were two adults and a high school senior (my sibling) and they took turns.

But in today’s world with living so far from work or not knowing neighbors or grocery stores in the suburbs and rural areas are so far.  And people have so many more medical appointments.  Why do we not have a national system for this?  You want to help put people to work?  You want to take people’s social security away?  You want people to work until they are 76?  Why not pay retired people to help their parents or church members or neighbors?  Why not employ a stay at home mom to check in on a neighbor and make sure they are taking their pills?  Or pay their gas milage to pick up a few groceries?  Why don’t we think about those who are not active, producing, and healthy?

Thich Nhat Hanh, (or Thay, as his followers call him affectionately – Thay is Vietnamese for teacher) says in No Mud, No Lotus, “The hardest thing to practice is not allowing yourself to be overwhelmed by despair.  When you’re overwhelmed by despair, all you see is suffering everywhere you look.  You feel as if the worst thing is happening to you.” Can you imagine having some of the pressure taken off, not worrying about how you are going to get to an appointment in the snow or how you are going to drag yourself to the store while you’ve been vomiting all day?  Imagine what it might be like to have someone stop by and make sure you had a pitcher of water by your bed and to let you know that you are not alone.

Think about it.  You might not be able to sit in an office all day if you are ill or maybe you are retired and don’t want to work all day.    You might not be able to go to work every day but what if we took the concept of care teams, like AIDS patients did back in the 80s and applied it more globally?  Now, back then, it was friends of the AIDS patient, often times because family had abandoned the patient.  But what if we had local hubs where a retired person could work once a week, similar to a hospice volunteer.  They could stop by and make a pot of soup or a paraprofessional could make phone calls to an insurance company for a patient.  We need to wake up and think about the elderly baby boomers who set trends, changed the world (for better and worse) and think about our new world.  We don’t manufacture anymore, let’s face it.  And I don’t care if you were a coal miner, a returned vet, or a young person, you could play a part.  We could help to end some basic suffering in the world.

The Four Noble Truths of Buddhism state, “There is suffering, there is a course of action that generates suffering; suffering ceases; and there is a course of action leading to the cessation of suffering” (From No Mud, No Lotus).  There is a lot of pain and heartache out there in the world.  We have to look creatively at how to solve today’s problems.  One idea is to come together as a community again.  And let’s face it, until our country moves to something like a few countries have just moved to where all citizens are given a stipend to live alleviate basic needs, we have to think of merging old worlds and new worlds.  We can be there for each other, even make some money doing it, and help raise each other out of suffering and aloneness.

So, tonight, I ask you these things:

  • If you didn’t have to worry about a pay check, what would you honestly be willing to do?
    • Would you visit a neighbor?  Make a pot of soup?
    • Would you take a community member to the doctors or stop by and pick up some cans of soup for an elderly person?
  • Why can’t we help people rather than marginalize them?  Why can’t we move to a society that is more inclusive, where people don’t have cracks to fall through?  What if we made a few extra pb & j sandwiches for the kids who stand outside our door waiting for the bus?
  • How do we move from our pain and more importantly our suffering to help others?
  • How do we foster a sense of belonging in those who have been told don’t matter?

 

May all beings be at ease and know an end to their suffering.

May all beings feel whole and know they are cared for.

May all beings be given the time and space to heal as thoroughly as they need.

May you be safe and at peace.

 

 

 

 

Losing

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About all I can hear is

the sound of the white birds.

I can hear cars in the far distance

and a couple of giggling children

across the river, but all I really

hear is god.

I hear the sound of the water

being splashed by the water fowl’s wings.

But all I really hear is god.

 

I sit where we sat only two months before.

The sun shines as brightly

as it did that day and the

winds have come back to greet me,

but now gloves cover my chilled

fingers and now you are not

before me, sharing your warmth and your life!

 

The sky and the water are about

the same color blue.

And the grass though sprinted with

more fallen leaves, is still as green.

Today is thanksgiving day and I sit

upon the bench we sat on once.

 

I saw you tan and glowing

much life still circling through you

and I was filled with joy,

even knowing that soon I would sit

on this bench and write a poem or letter

to you that no postman will be able to deliver.

 

How can one young as I,

have lost so much in such a short time?

And soon,

I may lose my sister?

 

11/26/97

For:  LPG

 

The Breath of Transformation

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The bell of mindfulness

Invited me to wake up

And remember my breath

For just one moment.

I knew the news before

I heard her voice.

This messenger held no

Surprises for me.

 

Breathing in,

Breathing out,

A transformation takes place.

Breathing out,

And releasing,

Just releasing,

Until departing becomes arriving.

 

I checked the calendar

to see if today was an auspicious day,

For some reason,

Any reason,

To help me make sense

of this awaited loss.

This present moment

Was arising and descending

Right before me.

 

I knew that my dear new friend had,

in one breath,

become a part of my ancestral heritage

and my future all at once.

I bowed to him with gratitude and honor.

I knew to see his smile again

All I needed to do was close my eyes

And smile as I had when he was

there before me just a few hours before.

 

I hear my own voice in my mind ask,

“Friend, are you there?”

A full and jovial voice answered

with no hesitation,

“Friend, I’m neither here nor there.

I just am.  That’s all we ever are.”

And with a tear and a smile I said in return,

using his own words,

“I like, I like it

It makes me happy

when someone believes. . . ”

And I knew we were now one.

9/20/2003

For TM

Friends Needed

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I’ve forgotten how much I need friends in my life.  For various reasons, I have not had any friends close by for the past 8 years.  Well, I do know why.  My pain got so bad and when it did, my world became smaller and smaller.

If you have never suffered from prolonged pain, and I’m not sure which word to emphasize there. . . suffer, prolonged, pain. . . then you might not know or understand that the person in pain can develop tunnel vision.  You see, my life became a horrible ritual.  I got up every morning, exhausted, in pain from head to foot, angry, frustrated, hurt, sad, jealous, and crushed.  I went to a job that was not congruent with any part of my life, except possibly my purse and even that was questionable.  I prayed throughout the day for the day to speed by but instead, by the end, each moment ticked by in agonizing slowness.  Every experience chipped away at my soul and every encounter hurt — someone’s voice being too loud, someone’s stale cigar smoke and body odor was overwhelming strong, someone’s laugh bore right into my bones, or someone’s criticism or demands on me sent my spirit crashing because I had no energy to give to anything or anyone.

The other thing that I found is that nothing seemed to fill the voids.  Sleep didn’t solve exhaustion.  Medications didn’t relax muscles or take away anxiety like their names promised.  And it wasn’t just one medication, it was egg cartons of them.  Ok, that is an exaggeration.  But at one time, I probably took a total of 10 pills a day and still had horrible pain more than half of any given week or month.  I prayed a lot.  For sleep to come quickly.  For the hours of 5:30-10:30pm to speed up so that I did not have hours of pain after work that would be filled with sitting in a dark living room, just staring.  And it would start again the next day.  Every weekend, I spent time at my family’s house, checking in on my elderly parents, and trying to act semi-social and not let my pain ruin those relationships.

But, yes, other people meant pain or pain triggers.  I had no control over sights, smells, energy levels, etc.  And pain or pain triggers?  Heck, I had enough of them in my life, why would I want other people to contribute to that?  I remember saying to someone, “No, I’m not going to lunch.  I don’t like that person enough to possibly end up in a situation where I’d have pain because of them.”  When the pain was bad, things like going to the grocery store was a nightmare.  Yes, I had to gone down the aisle with all the scented products, that was bad enough.  But then there were food triggers I had to avoid and when you are tired, in pain, trying to avoid more pain, and just wanting to go home and cease to exist, every food seems scary and a pain threat potential.

So there was no room for people, places, and things.  That’s not an excuse, that’s just what life became and I had no one to talk to about this.  No one to say, take a deep breath, and let’s figure out a way to live with your chronic pain.  Instead, my world became just me.  I had an incredible send off at my last job.  So much love and so many well-wishes.  I got lovely cards and clients who were so sad to see me go.  At that point, I was still good at hiding my pain from just about everyone.  It was so nice.  And many of my colleagues were just as sweet, some very good friends.  And I pushed them all away after I left.  I didn’t answer phone calls or cards.  I didn’t have the energy to drive an hour to have lunch or visit with them.  And they were all people whom I loved.  What if they wanted to go out for Asian food?  What if they had on cologne or fabric softener?  What if they laughed too loud or god, what if they wanted or expected something from me when I was now running for years on empty.  So, I pushed everyone away.  I even pushed long distance friends away.

I’m away from that life now.  And I’m rebuilding.  I’m revising my healing plan, dealing with my chronic illness in new ways, stretching my spiritual self, trying to eat healthier, do yoga, exercise, search, pray or chant, meditate, do biofeedback, journal, blog, write poetry, listen to books, read when not in pain, take up hobbies again, etc, etc, etc.  But somethings been missing and I have had a hard time putting my finger on it.

And then tonight, I got a call from an old friend, someone who knows me from decades ago, before the pain issues, in a different world.  We reconnected because of a post on facebook and when we talked tonight, it was like being in college again, or shortly thereafter.  It was someone who didn’t laugh at my accent or question my choice of words.  This person loves me and my story, my her-story and I felt so blessed.  This is one of my very favorite people and despite our lives going in very different ways and our temperaments being very different, this person is genuinely and honestly dear from the inside out.  What I noticed as she spoke was such a gentleness of spirit and a tender-heartedness.  I was so glad that we had reached out to one another and I made sure before we hung up that we planned to be in touch again.

What our call reminded me of was that I had been so one’s friend in the past.  I had people who I cared about and who cared about me.  There was a time when people weren’t scary or associated with pain or potential pain.  I knew that she wouldn’t judge me for not wearing make up or being or for being in a foul mood.  She knows me.  She’d probably laugh, tell me to take a nap, and call her when I felt better or she’d just say that she knew I was hurting and wished it wasn’t so.  Ah, how I miss having people around who could say that.  “I’m sorry it sucks and when you’re up for it, I’m here”.

If you know someone who has chronic pain, please don’t feel bad if they disappear and re-emerge.  Don’t be put off if they cancel plans or aren’t always there.  We never know what someone else is going through and most people don’t tell you what they are going through, even when you are super close.  But don’t turn away as it could be just when you don’t close the door that you save someone’s life.

To my friend, thank you from the bottom of my heart for being there and sharing your story.  The greatest gift you have ever given me has been that you have shared your heart and your spirit with me.

For everyone else, I wish you a peaceful evening.

As a reflection for tonight:

Think about the people or person that makes you feel like no one else can.  Imagine that person’s smile, either a time in your life when you shared laughter or that person gave you a smile, letting you know that everything would be okay.  Remember the laugh lines near the mouth, or the way the light bounced off their eyes.  Remember the way they tossed their hair or held their head.  Remember the moments you shared silently, not having to say a word but understanding that there was a deep un-ending compassion and complete unconditional regard and love between you.  Remember that moment when you feel alone or when you are in your darkest time.  Remember that look at 2am when you can’t reach out or 1000 miles away when you can’t feel that person’s hug.  Remember that part of a cultivated and lasting friendship is that that person touches within you the deepest, greatest, and best part of you and you do the same for that person.  If you feel alone, allow yourself to get in touch with that part of you that was fostered in relation to that person.

May you rise tomorrow to light and warmth.  May you be at ease and be free from lasting suffering.  

May you remember that this moment is the only moment that matters and that it is fleeting so pay attention to it and know that if your mind labels it bad or off or wrong, it will be over before you know it.  

May you always know that things change and don’t last.  For better and for worse, nothing lasts, except for true uncensored love.  

May you find freedom in your relationships, comfort in each other’s words, solace in each other’s smile, and delight in each other’s triumphs.  

May you never go to sleep without saying I’m sorry or forgive me.

May you feel your connection to everything in the world and remember that you and I are made of the stuff of stars.  

May you allow yourself to simply be.

 

 

 

 

I’m back. . .

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So sorry I’ve been away for a few days.  Where I live the barometer has been bouncing all over the place for the past 10 days and I’ve been in a lot of pain.  I’m pretty sure that it’s been the weather as I’ve had no stress at all.  I’ve been doing yoga, meditation, on two new meds for pain, doing some biofeedback, and really watching my food intake.  I could also tell because my mom, who has fibromyalgia, has been in horrible pain all week.

I’ve downloaded a number of things from Audible.com including:  Kum Nye Relaxation (several things from this) by Tarthang Tulku.  I downloaded You Are Not Your Pain by Danny Penman and Vidyamala Burch, Energy of Mindfulness by Thich Nhat Hanh, and The World of Relaxation by Jon Kabat-Zinn.  I’m looking forward to checking this out.

One thing that I want to set up, before January is over, is a schedule for all of the things I’m doing:  meditation, yoga, biofeedback, etc.  And I want to schedule time each day to read and to write on the blog.  I have come to accept that I’m going to have times like this when I am down for the count for reasons beyond my control, like the weather.  I did all I could and still had a lot of pain.  Instead of getting ticked off or thinking that it will “always be that way”, I have to accept that it’s not a week or day or hour to read but maybe it’s the time to crochet or nap or do something else.  But it won’t last forever.  And I just have to have patience and wait for things to change.

Anyway, today I didn’t wait to get a migraine because I knew I had a dental appointment so I took my cycle breaker and went to the appointment.  Happily, I never got a headache and was in minimal pain today.  Yeah for the changing tides of weather. So we’ll see what my PA has to say.  I can’t be on a cycle breaker (meds that I take to break a cycle of migraines that has lasted for several days despite medication to abort it in its tracks) all the time so I’ll have to let her know that my preventative medication isn’t doing enough to counteract the weather fluctuations.

I’m doing everything else like I’m supposed… two meals a day, water, sleep, staying away from trigger foods, staying stress-free or with minimal stress, watching my BP with my new meds, etc.  So we’ll see what changes we’ll make medically and go from there.  I have to accept that I will have chronic pain, like my mom and my grandmother on each side of my family.  It is something that I have to live with but not be ruled by it.

If you are suffering from pain, living with HIV or cancer or some other disease, living with trauma or something else that shakes your mental health, know you are not alone.  Even when you do everything you are supposed to, you can still have bad days or suffering from illness and old age.  The one thing that you can learn from the Buddhist teachings is that we cannot escape illness, old age, and death.  We can put them off but never escape them.  And do you really want to live this life thinking the next one will be better so you just have to be patient?  No, you want to learn to live here and now and find some quality (spiritual, physical, psychological) in this life, in spite of what’s going on.

Here’s to much less pain in 2018 and seeking to fulfill dreams.

Until the next time:

May you be free from suffering.  May you find the way out of suffering and the roots of suffering.  May you be happy and safe.  May you be compassionate and feel others’ compassion for you.  May you be loved and never take for granted how loved you are.  May you always know that you are not alone.

Peace.