“In Case No One Told You Today”

“In case no one told you today”

In case no one told you today:

– You’re beautiful

– You’re loved

– You’re needed

– You’re alive for a reason

– You’re stronger than you think

– You’re gonna get through this

– I’m glad you’re alive

– Don’t give up

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Possible Author – Live Life Happy
www.livelifehappy.com

Victor

I arrived at this hospital yesterday. When checking in, I told them I had been feeling suicidal. Someone put me in a wheelchair and brought me up to the 4th floor: the psychiatric ward. Someone else went through my belongings and found a pair of draw-string pants and pulled out the thin, cotton strip that would cinch around my waist. Did they really think I would kill myself with that?

Then, I was shown to my room with a single bed, the only window looking out at a drab grey building. I was told someone would check in on me every fifteen minutes. Instead of this unnerving me, I felt a great sense of relief. I felt safe for the first time in what seemed a long time.

The next day, I meet the other patients. There’s Andrea, who has obviously either been here for some time, or has come here before. She shows me “the ropes”: where to do laundry, where to shower, what time meals are. She rooms with Jasmine, who appears to be about Andrea’s age and it’s clear they have formed a friendship. One time, I hear a commotion, so I poke my head out of my room. Jasmine is in a wheelchair and Andrea is pushing her hard and fast down the corridor. They are both laughing and whooping it up and I find myself smiling a much-needed smile.

Then there’s Oscar with his droopy mustache and shuffling walk, who hangs out often with the waif-looking Toby; the two of them often having private conversations.

And then there’s Henry, who is wall-eyed and Asian, whose black, untended hair stands straight up. He can’t bear to look anyone in the eye and his whole body language is apologetic. He exudes both sweetness and confusion.

Victor is the only patient I am afraid of. He exhibits that kind of behavior that you see on the street that you want to avoid. He stands in a corner and argues with someone – someone the rest of us can’t see. Sometimes his voice becomes louder, turning to rage. Because I am so very anxious, and because there often seems to be no orderlies around, my fear escalates. I wring my hands; will he become violent? Will he unleash his violence on someone here? Me, even?

The other patients and I keep our distance from him. We all, excluding Victor, gravitate to one another, forming a kind of short-term family, while he remains a loner. I don’t know about the others, but I want it to remain that way.

But on my third day here, something changes that.

We are all gathered in the community room, including Victor. We take our places – Victor in the corner arguing, the rest of us sitting around the table, loosely interacting.

The TV is on, as usual. Today, someone has put in the DVD “Ghost”, which we look up at occasionally. Then the famous scene comes on with Demi Moore at the potter’s wheel, while Patrick Swayze comes up from behind, puts his arms around her, his hand joining hers. Then the familiar song, “Unchained Melody”, by The Righteous Brothers starts up, enhancing the scene.

Suddenly, Victor stops arguing. He turns from his corner and walks towards us and looks at the screen. He listens for a second, then opens his mouth and starts singing. His voice is full. His voice is tender. His voice is full of feeling. He knows every word, and every word is pitch-perfect. His gaze, usually hard and glazed over, becomes bright and clear, his blue black face is beatific and glows with an inner light. He is angelic.

The rest of us watch him, our jaws dropping. We are transfixed. We can’t believe what is happening. We know we are experiencing some sort of miracle.

And then the song stops – and when it does, Victor’s demeanor changes, and he turns away and goes back to his corner, resuming his argument.

For a full moment, no one says anything. We are stunned into silence. For a full moment we drop our roles (and our guard) and fall into that silence.

And then the moment passes. Patrick Swayze removes his arms from Demi Moore. Andrea and Jasmine look at each other and giggle. Oscar and Toby exchange glances. I bite my nails, my nerves returning. Henry hangs his head, as if embarrassed to be alive.

∗                  ∗                  ∗                  ∗                  ∗                  ∗

Now, looking back at that incident, I realize many things. The first, most obvious realization is that music has the power to heal, if only for a few minutes. Everybody knows this, to a degree. If I’m feeling funky, I can, for example, listen to Al Green’s “Belle” and my whole mood shifts. When his beautiful, soulful voice enters the room and for some time afterwards, I feel uplifted, changed.

The second realization is that for as long as “Unchained Melody” lasted, Victor was no longer “other” – someone to be feared and avoided. For those few minutes, he became a part of our weird, dysfunctional family. He became a part of us, and we were a part of him.

For years afterwards, I thought about that incident and wondered about Victor: How did he get that way? Why was he so angry? Was it purely a “chemical imbalance”? What was his life like before he came to the hospital? Did he live on the streets? Does he now? Did he ever fall in love, have a family?

Of course, I don’t know the answers to these questions. I only know he is my brother of sorts. I know his metamorphosis made me believe in miracles. I know I want beauty to be always a part of his life.

And, wherever he is today, I hope he is singing.

Unchained Melody by The Righteous Brothers/Produced by Philles Records (1965)

Belle by Al Green (producer, 1977)

∗                  ∗                  ∗                  ∗                  ∗                  ∗

No Separation

 

If you think you are

not the drunk at the post

office reeking of alcohol

and loneliness, you got

another thing coming.

Pain is pain.

Nobody wakes up one day

and decides to be homeless

and carry around a bottle.

What happens in that space

between the precious baby

and the stumbling man?

If there’s one thing I know,

even though at times it

may seem otherwise,

is that there is no such

thing as “us” and “them”,

and until we realize that

there will be no peace.

So lend a hand, a smile,

some money, sign a petition,

say a prayer, tip higher

if you can.

Each act helps us yield

to the simple truth that

there is no separation

between me and you.

No one is going

to come along

and save us from our

own undoing but ourselves,

interconnected reflections

of each other, each of us

a part of the holy web.

                        ~ Maluma

 

 

Faith

Here is another quote from the book I was writing on chronic illness, that never came to fruition.

“Faith includes noticing the mess, the emptiness and discomfort, and letting it be there until some light returns.” ~ Anne Lamott, 2016

In writing this book, I realized it would not be complete without a chapter on faith. Growing up in a family where there was disdain towards anyone with any religious or spiritual beliefs, faith was a sticky topic for me. Of course, upon examination, faith has more than one meaning. Putting aside religion for the moment, one of Webster’s definitions is “allegiance to any duty or a person”, or another; “complete trust” (Merriam-Webster Dictionary). The New Oxford American Dictionary has this one also: “a strongly held belief or theory”. I realized, too, there are many kinds of faith: blind faith, unshakeable faith, to name a few. Along with that, we can have faith in all kinds of things besides God or a Higher Power: one’s own goodness, one’s marriage, one’s friends. We can have faith we’ll make through the night.

In the realm of chronic illness however, what do we put our faith in? Do we, for example, put our faith in our health practitioner, our new medication, our new diet? Perhaps, but living in the western world, where there are so many choices out there, it can be overwhelming – which modality should we trust? Because we so badly want to be well, and therefore want to believe in the experts and what they have to offer, we may end up putting our faith into someone or something, that if it doesn’t work out for us, can leave us disillusioned, and/or helpless.

What would empower us more in this regard, is to put our faith in what we know to be true. In other words, if I am going to a doctor’s office for the first time, I know I’m going to feel vulnerable, so I will bring my partner, or a good friend, or caregiver along – someone who’s got my back. Because it’s easy to get off track once in the office, I bring a list of questions, any forms I may need. I may even record the session so that I don’t miss any valuable information and so I can stick to my agenda and get the most out of that appointment. Then I listen to what they have to say and how they respond to me. Besides listening to this information, they are giving me; possible medication to take, tests, etc., I listen to who they are and how they came across. In other words, do I trust them? Are they compassionate (Although compassion is not always necessary for me to get what I want in the modality of treatment, it is an added plus, and is part of the care I ultimately seek.)? I also ask myself if their response to my situation reflects an understanding that PTSD is a part of what I need to be treated for, as well as the neurological part. Do they hear I am sensitive to medications and that I want to start on a small dose, first? Essentially, what I’m putting my faith in is myself. I am using my experience and my intuition to determine if this is the right person for me to work with and if I believe what they are offering me is something I think could help me.

I learned to do this based on past mistakes and experiences. I could tell you many stories of what not to do, but I will recall only one, here. One time, many years ago, I made an appointment with a neurologist that lived nearby and had been recommended to me. It had been years since I had contacted a neurologist, because I had wanted to explore more alternative and natural choices, but I had been having partial seizures and they weren’t going away, and, as a last resort, I thought I might want to go back on medication, at least temporarily. Unfortunately, I went to the appointment alone. During the time I spent with him, he not only did not smile at me when we introduced ourselves to each other, but he never once looked me in the eye or made any real human contact with me. When he learned that I hadn’t been on medication for years, his tone was condescending and judgmental. I should’ve left right then and there, but I felt trapped and needy: to find and go to another neurologist would take time and effort; two things I felt I couldn’t afford. During his interview of me, he of course asked me about my symptoms. Because of my weakened state, as I described them in detail, I began to cry a little as it brought to mind all the difficulty I had been in for some time. I felt extremely uncomfortable doing so in front of this seemingly unfeeling man but found it impossible to hold back the tears. As I cried, he looked unconcerned, and continued taking notes, without a change in tone, an offer of a tissue, nothing. When I left the office, prescription in hand, I felt raw, exposed, unseen, and judged. Later, I was to find out that all doctors, at least during the time of his education, are taught to be detached from their patients, as to not become too involved. I believe a little compassion goes a long way, and that becoming skilled at being dispassionate can be detrimental to both doctor and patient.

Much later, I learned that he wrote in my chart that I was “emotionally disturbed”, which triggered a lot of anger in me: How is shedding some tears about one’s difficulty “emotionally disturbed”? Besides that, that kind of labeling had an effect on subsequent doctors; something I had to correct.

I learned a lot from that one office visit. I will never again go alone to a new doctor for the first time, especially a specialist and especially if I’m having a difficult time. That way, if I am too beat down by my symptoms to speak up for myself in ways I would normally, I have someone who will. I have also learned to look at my medical chart if I want, that it is my right to do so, and that I can clear things up if needed. I have learned, in essence, how to be my own advocate. I have learned to trust myself. In comparison to that doctor and the naturopathic doctor I am now seeing, I am treated with respect and compassion. I am asked about my emotional well-being, as well as my physical symptoms. If I am a little emotional, I am not ashamed because of it. I feel seen as a human being and not just another body showing up at her office. When I leave, I feel listened to and taken care of.

Blind Faith

Especially in the onset of our illness, we can be extremely vulnerable and uninformed, leading us to possibly act with blind faith. When we feel desperate or scared, we may make choices that end up creating more difficulty for ourselves. We can certainly have blind faith in doctors or practitioners, for example. We may take as absolute truth their diagnosis or recommendation without getting a second opinion or doing research on our own. We may, in our despair and brokenness, look for deeper meaning in our illness and turn to spiritual “experts” who abuse their power and wound us. We may get a psychic reading, for example, from someone who tells us that we are sick because we’ve embraced negativity and that all we need to do is to think positively, and in our fragile state we start to believe this is true.

Here is an example of blind faith: I once knew a woman I will call “Rose”. She began to have discomfort in her back, and, like most of us would do, she went to a chiropractor. After a series of adjustments, her discomfort only worsened. She then tried other practitioners; at first, only alternative. She was a true believer in the power of positive thinking and used affirmations as a daily practice. She had no doubt that she would return to perfect health. Yet, her condition worsened. Friends and family started to worry and encouraged her to seek out standard Western medicine and get some basic blood work done. She gave in, eventually, and it was discovered that she had bone cancer at an advanced stage. Undaunted, she continued with her affirmations and “knew” she would cure herself. After about a year, she died from the cancer, still, I was told, believing she would live.

It is one thing to have a positive attitude, and, since miracles are known to occur, it’s good to have an open mind to all possibilities. But it’s another thing altogether to live in a fantasy world with rose-colored glasses on, believing that only the outcome we want is one that will occur. After all, we will all die someday. If Rose had been willing to take off her own rose-colored glasses, she may have been diagnosed early on, and therefore, been able to get treatment and live a longer life. Or, barring that, she may have died facing reality: that her time on earth was coming to an end and to prepare herself emotionally and spiritually for that outcome.

“Yesterday’s faith does not wait for you like a dog with your slippers and the morning paper in its mouth”. ~ Anne Lamott, 2014

Losing Faith

What happens during those times when we lose our footing and we stumble or fall? What happens if we lose faith altogether? We may lose faith in our practitioners, our health regimen, or simply, if we’ll have another “good” day. We may lose faith in our body’s ability to heal after we get our test results back that reveal that cancer had returned.

This may lead to times when even greater doubt sweeps in and our spiritual beliefs are challenged. Suddenly, all the practices we used to cherish seem forced or uninspired. Meditation seems too difficult to pull off, because we just feel too lousy to concentrate. Perhaps we heard that the spiritual teacher we put our faith in has done something we think is a little, or a lot, shady. Or, even though we may have had experiences that reveal to us that there is something greater than ourselves that we can depend on, when unrelenting pain begins to take over our body or meditation doesn’t work anymore, those experiences become dim memories. “God” or “Spirit” or “Higher Power” now seem like mental constructs that hold no real meaning or comfort for us. Perhaps we feel that God had abandoned us. We can’t pray, because we don’t know who we’re praying to, and we’re not sure anyone’s out there. Doubt and fear move in and cloud our thinking. Now what?

For most of us, this is a difficult and uncomfortable place to arrive at. We need answers, we need something to rely on! In our vulnerable state, there’s a tendency to want to grasp onto something and yet there’s nothing there. This can feel confusing and frightening and leave us in a fragile state of mind.

But, re-examined with an attitude of great care, curiosity, and, if we can manage it, a dash of humor, this place can begin to feel spacious and even freeing. If we don’t know, or aren’t sure, we find ourselves floating in this space of unknowing, with nothing to cling to – not God, a teacher, a diagnosis, or a plan. We are free of any constraints, or even beliefs. There’s an openness there, a freshness we can bring to our life. Sharon Salzberg, Buddhist teacher and author, speaks eloquently about the differences between beliefs and faith: “With their assumptions of correctness, beliefs try to make a known out of the unknown. They make presumptions about what is yet to come, how it will affect us. Faith, on the other hand, doesn’t carve out reality according to our preconceptions and desires. It doesn’t decide how we are going to perceive something, but rather is the ability to move forward, even without knowing. Faith, in contrast to belief, is not a definition of reality, not a received answer, but an active, open space that makes us willing to explore. While beliefs come to us from outside – from another person or a tradition or heritage – faith comes from within, from our active participation in the process of discovery”.

When looked at more deeply, this free-floating openness may feel familiar – we may have come here before. We may have come to it for other reasons than our health or crisis of faith. Maybe it happened the first time we developed strong feelings for someone. We didn’t know what to expect – we never felt this way before! Maybe we weren’t sure how the other person felt and that made us feel vulnerable. Now, we realize, we are experiencing that same sort of vulnerability – we’re not sure of anything! We may have developed new symptoms and have no diagnosis, or feel conflicted about our spiritual beliefs, but in exploring that vulnerability, we also experience a certain kind of innocence. It’s as if we are looking at life with new eyes. If we look back on those other times, we can see that, eventually, we got answers. Eventually, we understood what was happening. We got a diagnosis. We found out that the other person we had feelings for felt the same way and we ended up developing a relationship with them. The unknown became known. This in-between place, where we float freely, is called faith. In other words,

“When you have come to the edge

of all the light you know

and are about to drop off

into the darkness of the unknown,

faith is knowing

one of the two things will happen:

there will be something solid

to stand on,

or you will be taught how to fly”.

                                                ~ Patrick Overton

Meanwhile, while we take that leap of faith, we are in that between place, whether waiting for test results, wondering if we should see one more practitioner, or struggling with our spiritual beliefs, what we can always rely on, what we can believe in, is this present moment. We can always trust what’s right in front of us and bring our presence to it. By doing this, we fully commit our entire being to be with what is, right here and now, and come into our spiritual power. In other words, I can, without a doubt, know the texture of this moment: my fingers moving across the keyboard, the sound of my cat eating her breakfast, the openness of the white page before me. Or, if confusion and doubt are what’s arising, I can explore these mind states with the compassionate awareness I’ve come to know in meditation. I need no proof from any other sources to guide me. By becoming present, I am not borrowing beliefs from someone whose spiritual knowledge I perceive is more advanced than mine… Here is this moment before me with everything it holds. Understanding that, I believe in the next moment and the next. In this way, I am putting my faith in all these moments strung together. I know I can make it through this moment, which gives me the confidence to make it through the next. Just as in meditation, we build a kind of faith by strengthening our ability to sit with whatever arises; fear, impatience, the ache in our knee, etc., we begin to trust in our innate ability to handle the unfolding of our life, whether gracefully or clumsily, and always courageously.

Twelve-Step programs offer the sage advice “one day at a time”, but for people living with chronic illness, sometimes it comes down to one moment at a time. In fact, this is one of the biggest lessons and gifts of chronic illness and one of the highest and honorable spiritual teachings we can receive as human beings. Even if we’re doing better lately and not facing any new crises with our health, we don’t know how we’ll fare tomorrow or perhaps even later today (Of course, this this is true for anybody, whether chronically ill or not; it’s just that truth is more in our face than those whose health is more predictable).

By living in the moment, life slows down and we come to appreciate the preciousness of life in all its simplicity: sunlight streaming through colored glass, our heart beating in our chest, the sound of a hawk overhead. I remember, for instance, one time when I was recuperating from a seizure at my parents’ house, I would often lay on their couch and look out the window. Directly in my view was an elegant redwood tree. I would focus on this tree until it became a part of my healing. At times I felt I “entered” the tree and became its beauty as I lay there with nothing else to do, nothing I could do. To this day, when I visit my parents and sit on the couch and take note of that tree, I feel a special connection with it, as if we are friends.

This kind of slowing down can be applied even when we are doing better, it can permeate our life. If we are stuck in traffic, for example, instead of getting worked up about the inconvenience, can we take the time to watch the breeze move through the grass alongside the highway?

Here is my own story on faith and relying on the present moment: One day, I had to go to the next town, 30-minutes away, for a doctor’s appointment. Although I felt tired that morning, I felt completely able to drive. But, before I left, two friends of mine came over for a visit. Although I was happy to see them, the visit was a little chaotic – we hadn’t seen each other for a long time and there was certain time constraint, because I had to leave soon after they arrived. That led to all of us talking at once and interrupting each other in excited and sometimes loud ways that only close friends can do. When I left, I felt happy, but a little overwhelmed and realized that the visit had taken its toll on me. I questioned my ability to drive, for a second, then dismissed it, because just twenty minutes ago, I felt quite capable. Once in the car a short time later, I pulled to the side of the road, realizing that I felt too tired and unsafe to drive. Luckily, I had my cell phone with me, so I called my partner and told her of my predicament. She told me to stay put, that she would come and get me. While waiting for her, I began to feel slightly seizury. Not figuring I would need any, I hadn’t brought any anti-convulsant medication with me. I knew it would be about a half hour before she would show up. Because of the seizury sensations, I felt very uneasy and exposed parked there beside the highway all alone. I knew I needed to put to use my spiritual practices, but at the moment, they all seemed too complicated to do and involved too many steps. What came to me to do was the very basic meditation techniques of becoming present. Just the thought of remembering this brought a certain peace of mind. I knew, based on many experiences before in meditation, that just being aware of whatever came up in the present moment would stabilize my mind, and it did so in this case, too. Although I was frightened, by bringing my mind to the present, I was able to let fear float, allowing space around it, making the wait much more tolerable. This kind of remembering is based on repeated experiences that allow us to have faith in not only our practices, but in having the confidence in our innate ability to face whatever arises in life.

Crises of Faith

“As human beings, not only do we seek resolution, we feel that we deserve resolution. However, not only do we not deserve resolution, we suffer from resolution. We deserve something better than resolution: we deserve our birthright, which is … an open state of mind that can relax with paradox and ambiguity”.                                                                                                               ~ Pema Chodron

I have found in working on many chapters of this book that whatever the topic was, those topics happened to be up for me. This is one of those chapters. During the time that I started working on this chapter, I struggled with two crises of faith. Because of this, I sometimes felt anywhere from uneasy to plagued with doubt, lost, afraid, or like the rug was being pulled out from under me. The first aspect of faith that was being challenging for me was within Tibetan Buddhism. Although it is dear to me, there have been certain aspects of it that I don’t necessarily agree with. And yet, because I’m not an expert in the field, and consider myself a work in progress, I can doubt my own gut feelings and experiences, which can shake me to my core. When I began to look for answers by reading different books on Tibetan Buddhism, and talked with experts on the topic, I became further confused, as they didn’t all agree. Who was I to believe? At times, I felt as if I was up against dogma, yet I found it hard to trust my own instincts.

The second crisis of faith was my marriage. After thirteen years of partnership, we came up against issues that neither of us knew how to resolve. Were we going to end up another broken-up couple? Did we have whatever it took to make it through this particular hardship? As I finished touching up this chapter, we ended up healing and solving our problems, but in the process, I felt very lost, confused, angry, guarded and scared. Deep survival issues were at stake for me – if we broke up, I wondered how I would fare, as besides being my life partner, she can act as a part-time caregiver.

With both cases, remembering that with past experiences, some resolve would come eventually. I fell into that unknown space, at first with fear, but then I applied a certain curiosity to the state. When I didn’t project into the future about the state of my marriage, and when I let go of fear about my spiritual beliefs, I found myself free-floating in that space, and, when I really let go, it felt quite liberating, as if I were unattached to anything. Sure, I wanted my marriage to succeed and I wanted to resolve my conflicts with Tibetan Buddhism, but since I was up in the air about both, I sought to become as comfortable as I could in that in-between place; that place of unknowing. In fact, it reminded me a little of the one and only time I went skydiving. Determined to leave my fears behind (and attached to a well-seasoned professional), I jumped out of an airplane thousands of feet above the earth, into space.

When the parachute engaged, I felt this giddy sense of freedom, and intense aliveness as I floated towards the earth. When I landed safely on the ground, I was still high from the experience – a feeling that stayed with me for a long time.

Because the issue in my relationship did resolve, I felt stronger in my marriage than ever. With Tibetan Buddhism, I am not completely resolved, but am learning to trust my own spiritual experiences and validate them as real. When we face our fears full-on, when we don’t run screaming in the other direction, we discover new territories within that can expand our ways of meeting the unknown.

I’d like to end this chapter with a story about three blind people and an elephant. Each part of the elephant that they can feel is what they believe is the elephant in all its entirety. But only one feels its trunk, one feels its side, and one feels its leg. Each only knows a part of the elephant.

Learning from the mistaken conclusions of their perceptions and applying that to illness, we come away with the understanding that at least for now, we may not know the bigger picture, but sense there is one. That is to say, we may not know how we got ill or why, or if we’ll get better. We may not even have a diagnosis, we may not know if the regimen we take up will improve our condition, do nothing, or completely cure us, but we fumble in the dark with the piece of knowledge we do have anyway, trusting in the process as best we can. We may lose our way at times, forgetting that our part of the “elephant” is not the only reality and fall into the darkness around us. Because of that, we need reminding again and again, to have faith. When I need reminding, I rely not only on spiritual teachings and practices, but my partner, intimate friends, caregivers, and my therapist/spiritual teacher. Eventually, holding the hand of others, I become more confident facing the unknown, and the fears that often come along for the ride.

Prism

Refracted light is like the human soul –

it can never know its full capacity.

We come to this earth plane

again, and again

seeking wholeness,

not understanding that in these separated forms

we can only find limitations in our surroundings.

Like rainbows that splinter off of crystal

we are denser creations

born of that greater light

left yearning for what we remember.

Faith then, becomes the link

that reconnects us back to that wholeness,

that moves us forward through this life,

that flicker of memory

still lingering in our minds.

~ Maluma

 

Citations:

Chodron, P., When Things Fall Apart: Heart Advice for Difficult Times. Shambhala (2016).

Edison, M., Poems by Maluma (2013).

Lamott, A., from @ANNELAMOTT tweet November 16, 2016.

Lamott, A., Small Victories: Spotting Improbable Moments of Grace. Riverhead Books (2014).

Maluma’s Leap of Faith personal video. Clips (edited). Original video NorCal Skydiving.

Merriam-Webster Dictionary from https://www.merriam-webster.com

New Oxford American Dictionary, 3rd ed., 2010. Oxford University Press.

Overton, P. – from QuotedHD  http://www.quotehd.com/quotes/patrick-overton-quote-when-you-have-come-to-the-edge-of-all-light-that-you-know

Salzberg, S. – Faith: Trusting Your Own Deepest Experience. Riverhead Books (2003).

Links for meditation:

https://www.pocketmindfulness.com/6-mindfulness-exercises-you-can-try-today/

https://psychcentral.com/blog/1-minute-mindfulness-exercises/

https://www.headspace.com/meditation/body-scan

https://www.headspace.com/meditation/sleep

https://blog.mindvalley.com/best-guided-meditations/

 

Cari

Cari Looking to the Right (2)

I walk into Cari’s room. The lights

are dim and the TV is on. When she looks

up at me from her recliner, I notice she is

squinting.

“Oh. Migraine”, I say, keeping my

words to a minimum.

She sighs. “Yup”.

“Again”.

“Yup”.

“I’m sorry. I’ll be quick. I want to let you know a caregiver won’t be coming today, after all”.

“Oh. Who was on”?

“Liza”, I say.

And then I quietly leave the room, closing

the door gently behind me.

As I return to the living room, I reflect on our relationship. Cari and I met through a mutual friend. I had heard she had epilepsy, too, and I really wanted to know how she managed.

I had a lot of compassionate friends, but I knew it would be different if I met someone who dealt with the same issues that I did. I wanted to know: how did she cope? Did she have seizures often? What kind? Did she take meds? Were they under control?

We eventually got together and shared information, and shortly thereafter, became friends. The friendship turned into attraction and we fell in love. A year later, we exchanged vows in a wedding ceremony in our front yard.

When I knew we were falling in love, when I knew this was a relationship I wanted to pursue, I realized at some point we would need help (I had learned in the first few months of knowing her that she had other health challenges, including debilitating migraines, chronic sinusitis, and what eventually culminated in arthritis throughout her body, due to past injuries and years of playing sports. On top of that, she occasionally walked in her sleep!). At first, this help came from friends who were willing to step in when we were both down for the count, mostly to do needed errands. But I knew as we aged, we would need more assistance.

Evening is my favorite time of day, because it means that Cari will come out of her den and we’ll watch TV together for a couple of hours before the caregiver shows up for the night. One of our cats (Reggie) curls up between us as we watch our favorite programs. It’s family time for us.

I love this ritual. We may not talk much, but that doesn’t matter; her presence is really all I need. She gives me something that no one else can, because she understands what it is like to live with chronic conditions and because some of those conditions overlap.

Over the past 25 years, we have seen each other through seizures, pain, emotional ups and downs, struggles with doctors, changes in medications and even menopause. We have figured it out. We get each other. And that gives me incredible comfort, and that is what has kept us together.

There are times, though, when one of us becomes insecure and wonders: Am I too much for her?

Here’s my response when it’s she that feels this way:

 

My Rock

 

You are my rock

not my hard place.

I lean back on your

solid stone so I can

feel the sun on my

face and the breeze

on my skin.

You are an artist.

You take the pieces of me

that are broken

– shattered shards –

and make them into

stained glass

the light singing through

all of the colors

not leaving even one of them out.

Cari and Maluma Peaceful (2)

 

Another Excerpt from the “Book” I Never Finished: Chronic Illness and PTSD

All people I know who have chronic illness challenges struggle at some point or another emotionally. There are times when our emotional suffering can overtake our physical suffering. Fear can grab a hold of us and spiral out of control, turning into anxiety or panic attacks. Thoughts turn dark and the spiral becomes depression or despair.

We’ve already explored the difficulties one faces at the onset of our illness; loss and the fears that often go hand-in-hand with it (refer to my previous post of April 8, 2019 Excerpt from My “Book” “Introduction and Initiation to Loss”). But, there are other scenarios that can cause difficult emotional responses, making it hard to maintain our equilibrium. One might be that we’ll go through a period of time when our symptoms are minimal and we have more choices available to us, our life opens up again. We might start to make plans, we may think we can get our career back on track. We may even believe that we are restored to perfect health, never to deal with the illness again. Then gradually, or perhaps suddenly, something shifts again, and we take a turn for the worse. It’s easy to see that these sets of circumstances could trigger our old fears of isolation and dysfunction or launch us into depression.

But sometimes, even if we’re doing okay physically, intense, dark emotions seem to rise out of nowhere and we are carried away by despair, hopelessness or dread. What’s going on here and what can be done to ease our minds and hearts in all types of scenarios?

First of all, it’s important to understand that because of the intricate relationship among them, when the body is in a weakened state, so is the mind and therefore, the emotions, creating an atmosphere that most of us find very challenging. I notice this with able-bodied people as well and more clearly, when they get something like the flu. At first, they’re unperturbed, and take remedies or pills and rest, knowing it will pass. But then, as the days go by and they realize this particular strain of flu might go on for a few days, they become grumpy. But then, if the flu goes on for weeks and the symptoms are difficult; high fever or stomach cramps, accompanied by sore muscles, for example, their usual cheery and determined disposition changes. They become a little nervous: When’s this going to end? They exhibit insecurity and question their significant other: Do you still love me? As people dealing with chronic illness, our challenge is on-going, which includes our emotional and mental reactions to our ill health, as well.

Secondly, it’s important to understand that some of the emotional and mental challenges that arise for people with chronic illness can be symptoms of Post Traumatic Stress Disorder. This understanding took me years to realize. It wasn’t until I saw a tv program about a Vietnam vet with PTSD, that I recognized myself – a lot of his symptoms were similar to mine: insomnia (although I believe mine is partially due to my neurological makeup), hypervigilance (for me, during the night: what if I have a seizure?) and occasional panic attacks (heart pounding, stomach in knots, persistent anxious thoughts). To come to the understanding that I have PTSD, was an enormous revelation for me and extremely validating.

In the past, when I exhibited these symptoms, I felt a certain shame with it: Why am I so weak-minded? Why can’t I sleep like everyone else? Why am I so fearful? Now I had a name and a reason for these particular reactions, which made me feel better about myself and therefore, more compassionate. I understood that for me, having grand mal seizures are traumatic, and that even though it’s been 20 years since I last had one, the fear of grand mal seizures is still great.

Because of this understanding, I could become kinder to myself and admit, with less shame (I’m still a work in progress), that I needed help. So, I hired caregivers. This way, at night, for example, when my anxiety becomes too much for me, when depression enters the room once again, I don’t feel like I have to “power through” – I can get up, wake up my caregiver and we can talk, have a cup of tea, and I can calm down more, and maybe even laugh!

Here are some of the classic symptoms of PTSD:

Emotional expressions

irritability, angry outbursts, guilt, shame, despair, disgust, anxiety, panic, nervousness, sadness, loss, depression, and overwhelm

Overall symptoms

sleep disturbances, hypervigilance, difficulty at work, impulsive destructive behavior, problems with concentration, strained relationships, changes in personality, loss of identity and sense of purpose

Physical symptoms of PTSD

headaches, colitis, and respiratory issues, ulcers

Of course, some of these things could be attributed to other causes, as well. It’s probably best to talk with a practitioner who is familiar with PTSD in people who are chronically ill, but if you have some of these symptoms and something resonates in you that their cause is PTSD, then I’d say chances are you are right.

As people living with chronic illness, we can feel we no longer trust our bodies, that they aren’t safe or reliable. This feeling affects the very core of our being. We feel unprotected. We live with the fear of a recurrence of our worst symptoms. We sometimes feel unsupported and misunderstood by our friends, family and doctors who think it’s all in our head, or that we aren’t trying enough to get well. This can further compound our doubts, fears and shame about our innermost selves and cause further isolation from community and society at large. Our financial position may change drastically, which affects us on a core survival level: How will we pay for any medical help? All this can be very traumatic and shouldn’t be minimized.

A direct quote from Counseling and Psychotherapy reads:

“A recent study showed that people whose worst event was a life event such as chronic illness, had more PTSD symptoms on average, than people whose worst life event was typically traumatic, such as an accident or disaster”. I feel the truth of this statement in my bones and I believe the reason for this truth is that our trauma is on-going, not a one-time occurrence.

According to studies, treatment for PTSD is multi-faceted, using a combination of education, medication, and therapies to address the effects. This is certainly true for me. In order for me to have any hope of even a fair night’s sleep, with my psychological and neurological makeup, I need a combination of hypnosis techniques, emotional support, medication and remedies. If you think you suffer from PTSD, it’s probably best to tell your practitioners (ones that understand this phenomenon) to get the help you need. It may take experimentation to figure out what works best for you, and what might make the best combination of therapies, support, medication and/or remedies. Understand that you may not ever “get over” the feeling of being traumatized but can look towards improving the quality of your life.

Love Matters

One day, my caregiver drives me to Ukiah – a half hour away – to go to the Social Security office. I anticipate a long wait, as I don’t have an appointment, but we get there early and only have to wait 15 minutes. When I go to the window to talk with someone, our exchange is even more brief.

I had planned to have lunch afterwards, but it is too early for that, and I don’t feel like going home. It occurs to me that I could visit Josephine, who has dementia and lives in one of the facilities in town. I tell my caregiver my idea and off we go.

I haven’t seen Josephine in a long time. I first met her in Massachusetts when I was 13 years old, about 50 years ago. She is the mother of my first boyfriend, Mark, who, long story short, ended up living with me and my family until he graduated high school. When Mark and I broke up a few years later, I ended up renting an apartment from her back east for a short time. Our families have interacted with each other over the years: Josephine bought land in the tiny town of Elk, CA, where my parents moved to, and Elizabeth, her daughter, moved there once a house was built. Josephine continued to live back east, but she came to visit Elizabeth often, and, while there, saw my parents too, and sometimes I’d make an appearance during these visits. Mark and I stayed in contact over the years and he would occasionally call my dad, whom he had made a strong connection with while living with us.

When my caregiver and I arrive at the facility, I start having doubts: Will she remember me? Why am I doing this?

Putting these questions aside, I go up to the front desk and ask the woman behind it if I can see Josephine Mitchell. She lets me know she’s in the middle of an exercise class, but it would probably be okay if she came out for a visit.

While I am waiting, I look around: The lobby looks clean and spacious, but what about the rest of the building? Does she share a room with others, and if so, how many? I don’t think Josephine had a lot of money, so I don’t know what she can afford.

In the midst of these thoughts she shows up in the hallway that leads to the lobby. I’m surprised at how young she looks. She doesn’t appear much older than the last time I saw her – probably 15 years ago. I approach her tentatively, not knowing how this is going to go. I have never been in this situation before and I don’t know how to act.

As I get nearer, I notice that, although physically she looks the same, there is something in her manner. Josephine always seemed sure of herself, confident and outspoken. Instead, the woman before me looks a little lost, a little frightened and as awkward as I feel. She has a small, uncertain smile on her face, which makes her seem young, almost innocent.

“Do you know who I am?”, I ask.

She shakes her head.

I explain my relationship with her, mentioning her son’s name. When all I get is a blank look, I add a little more: where we met, that I know her daughter, as well. But I can tell this doesn’t trigger any memories at all.

“Well”, I say, feeling foolish, “can I give you a hug”?

She shrugs and then gives a little nod as if to say, “I don’t have any idea who you are, but you seem like a nice person, so why not”?

And so, I give her a gentle hug and then we just stand there looking at each other, both of us unsure what to do next.

“Well, I guess you might as well go back to your class. It was great to see you”, I say, lamely.

When I leave, I continue to feel foolish. What was I thinking coming here? It meant nothing to her.

But, as the day wore on, I realized it meant something to me. I gave myself the gift of respecting my own memories that are still with me, as she edges towards death, leaving hers behind. Those memories connect me to an impressionable and precious time in my life that left a positive imprint, which compelled me to reach out to Josephine.

Memories link us together. When we think of someone in some significant way, it is our memories of them and what they stand for that causes us to act or feel a particular way. Somewhere deep inside of us, we sense that this interconnection leads to interdependence for all of us. Simply said – we need each other to survive and thrive.

It was also a good lesson for me to be on the other side of things. I thought that because of my own experiences of loss of memory after seizures, I would know exactly what to say and how to act with Josephine. But I didn’t. It was humbling. And it also gave me insight into what my caregivers, friends, and family sometimes go through when they struggle with how to be with me when I am feeling seizury or extremely sleep deprived or anxious. I now know how they felt.

Love isn’t always straightforward.

Relating to others can be awkward or confusing. We will sometimes feel foolish in our interactions.

But, that doesn’t matter. What matters is that we try. What matters is that we show up in difficult times. What matters is that to the best of our ability, we say and do things that add up to “I love you and I care”. What matters is that we don’t give up on ourselves and each other. We are all fools for love at some point or another; hopefully often.

Love matters.

Bill

He smokes a pipe dangles

it from his mouth like a pacifier

Eating he leaves crumbs on

his face his lap the floor

He is Groucho Marx with his

black framed glasses and moustache

loves old New Orleans jazz

dance – shuffles to Bessie Smith:

“Gimme a pigfoot and a bottle of beer”

His fingers are bent from hurled softballs

his teeth brown from neglect

He drinks Jack Daniels and soda

loves chocolate and pies

leaves tobacco everywhere

can’t stand being late

He issues orders to family

and friends and anyone

who is there

He takes you out to dinner

flies first class wears a

red cashmere sweater with holes

When I was a child he was playful

made treasure hunts played Superman

his beach towel a cape

He taught me softball and Scrabble

told scary stories teared up

at sappy movies

Now he walks with a walker

slams it down when angry

has pee stains on his pants

He’s going deaf but denies it

plays solitaire with cards

grimy gray and worn

He becomes melancholy at twilight

And now since my mother’s death

his cat Zorro and the orphan moon

are his only nocturnal companions.

Mariah Carey at Rite Aid

While standing in line at Rite Aid, I look over at the magazines at the counter. On the cover of People Magazine is a picture of Mariah Carey, with a caption revealing she has bipolar disorder. When I reach the counter, I take a copy and set it down with my other items to buy: a notebook and my favorite pens.

The cashier ringing me up glances down at the cover.

“Mariah Carey’s bipolar?”, she scowls.

“Seems like everybody’s bipolar these days. I think it’s just an excuse. They want attention, or they’re just weak-minded. Sometimes you just got to buck up”.

I look at her tight mouth and flashing eyes and wonder about her life. Does she just “buck up” and push through? Is that how she handles the difficulties of her life?

I must have a shocked look on my face, or maybe my mouth is tightening, because when she looks at me again, she says, modifying her tone, “or maybe she is bipolar”.

“Maybe more people are coming out about it, are being braver”, I suggest.

And with that exchange, I leave.

The conversation bothers me. It’s attitudes like hers that keep brain disorders and mental illness in the closet. All chronically ill people have to push harder to go through life. Mentally ill people have the added difficulty of having a stigma attached, making it hard to feel okay about having an illness that affects the mind.

Why is it such a stigma? The brain is part of the body, not separate from it. So why do we get so judgmental or frightened about mental illness and not as much or at all about other illnesses? Unless someone is violent, it seems no point in being afraid or protecting ourselves. Are we all just frightened of losing control, ourselves? Aren’t we all trying to keep it together on some level, at least some of the time?

Strictly speaking, bipolar disorder is a mood disorder, not a mental illness. For that matter, so is an anxiety disorder. If I’m honest, I feel a sense of relief that I am not labeled “mentally ill”, because I don’t want to be lumped with “those people”. I’m not a psychiatrist, but it seems to me that there is some sort of spectrum. You have people like me on one end, and a paranoid schizophrenic on the other. Am I a better, more respectable, likeable, deserving person because I’m more functional in the world? No.

Personally, I’m happy Mariah Carey is on the cover of People, telling her story. Kanye West gives no apologies for his bipolar disorder. I’m happy Howie Mandell is honest about his plethora of anxieties, even making us laugh about them. When well-known people are outspoken about their mood disorders and mental illness, I think it encourages others to do the same. Maybe by doing so, the stigma of mental illness can slowly slough off because of their willingness and courage; to be vocal about it and be themselves.

We have a long way to go. There needs to be a lot more education about all kinds of brain disorders, until shame is ditched and replaced with compassionate understanding. Everyone can come out of the closet and not fear condemnation. We all deserve to be respected, accepted and treated well by our doctors, friends, and community. We are all part of a greater whole and deserve to be recognized as such. Otherwise, there will remain a fracture in our humanity and we will all suffer from it. And I don’t want that. Do you?

“We’re one but we’re not the same. We need to carry each other”.  ~ Mary J. Blige

Introduction to Tonglen

The following is an excerpt from my “book” that I wrote years ago.

Introduction to Tonglen

         There are times when, in the midst of recovering from a seizure or getting out of bed after another sleepless night when not only do I feel I can’t face one more minute of my life, but I ask the question many of us ask at some point in time: Why this senseless suffering? What good can come from this? At times like these, it can feel that all I am is an embodiment of suffering taking up space in the world. You may feel this way at times as well, or perhaps you come to these kinds of questions when hearing a news story about war or some other facet of brutality. For me, the Buddhist practice called “tonglen” provides an answer. Tonglen takes that feeling of senseless suffering and gives it a purpose: transforming it into compassion.

Tonglen (a Tibetan Buddhist practice) means giving and receiving in Tibetan or exchanging oneself for another. I find the latter a more accurate description, as one of its benefits is developing empathy. When I am having the most difficulty with my health, tonglen is a meditation practice that has helped me greatly, over the years.

When we practice loving kindness meditation, we tap into that part of ourselves that truly cares about our well-being and that of others. When we practice tonglen, we use that same desire for well-being and deepen our capacity to care. Tonglen, above all else, develops compassion.

But just what is compassion? As Sogyal Rinpoche says in The Tibetan Book of Living and Dying (1992), “True compassion is the wish-fulfilling jewel, because it has the inherent power to give precisely to each being whatever that being most needs, and so alleviate his or her suffering, and bring about his or hers fulfillment”. It may not always be easy for us to experience this valuable and precious quality, for we may have guarded our heart well, thinking that by doing so, we can protect our self from pain and suffering. And, just as we discovered in loving kindness meditation, we may also feel we are undeserving of any kind of tenderness; in part perhaps, because we may feel that on some level, we brought this illness upon ourselves. This way of thinking couldn’t be further from the truth. Because of feeling unworthy, we are more in need of compassion than ever. As people with chronic illness, we have also been on the receiving end of toxic responses, such as fear, pity, shame and judgment (some of which may come from ourselves). These experiences can spark a disconnect with others, bringing with it a feeling of isolation and loneliness. Compassion, on the other hand, is a shared connective experience that brings with it a deep understanding. When we are touched by compassion, we feel seen and accepted. Compassion, and in turn, tonglen practice asks of us to instead of turning away from our pain and suffering, to come towards it, feel it, and in fact, embrace it with the utmost love and attention and with the express desire and intent to transform it. Just as we found in loving kindness meditation, at times it takes great courage and effort to practice tonglen, because it asks of us to not only acknowledge our pain and suffering but know it intimately.

         The Practice

         Preliminary information to practicing tonglen may be found in the “Loving Kindness Meditation” section of my Loving Kindness, Part II blog posted on May 5, 2019.

There are many ways to practice tonglen: The methods I present here are what I consider the most suitable for those of us with health challenges. In some places, I’ve made modifications. If you want to further explore this valuable practice, I recommend you read Sogyal Rinpoche’s descriptions of it in his book The Tibetan Book of Living and Dying or Pema Chodron’s in The Places that Scare You: A Guide to Fearlessness in Difficult Times (2002).

To begin, get in a comfortable position and start with the basic meditation techniques of becoming aware of body sensations and listening to sounds. Then pay attention to breath, becoming aware of its movement throughout the body. Then, for a brief time, note your thoughts and feelings. Become the observer, allowing your body/mind to become expansive as these thoughts and emotions move through you. Align yourself more and more with that expansiveness.

Maintaining this vastness, bring your awareness to your mood. Are you anxious or depressed? Are you feeling irritable because of pain? On the inhale, breathe in any difficult mental or emotional states to your heart, allowing them to dissolve. On the exhale, breathe out calmness and compassion for yourself, cleansing the quality of your mind. It may be that you are only able to touch your hurt or sorrow or pain for a moment here, a moment there, and that’s okay. You may not be used to being so tenderly attentive with yourself, but luckily, you can practice this technique again and again, and by doing so, become more familiar with it. If you have a hard time opening to this self-compassion, you can also start with loving kindness meditation and/or the “jump-start” (see below for quote from Loving Kindness, Part II post) techniques that precede it; remembering you are worthy of love, a time when someone was kind and helpful to you, and then proceed with this practice.

“Traditionally, we begin these phrases with ourselves, then move on to others, building up loving kindness in our hearts. But, although the idea of showering ourselves with loving kindness may seem simple enough at first glance, we may have difficulty with it. We may not be used to such gentleness with ourselves. If this is true for you, or if the words become mechanical, take time to recall an incident where someone was kind to you. It can be as simple as someone letting you into the flow of traffic, or a gentle tone someone used with you when you felt out of sorts. Connect with that feeling and then begin the phrases that work for you”.

I find that by offering compassion to these vulnerable parts of oneself is what’s been needed all along, and if you’re at all like me, you never knew that, or need reminding. There’s a sadness that can come with this awareness – a sadness that we’ve separated ourselves from our own love for a long, long time. What we’ve always yearned for – true understanding – we can best receive from ourselves; for who knows pain better than us? By practicing self-tonglen, we are coming back to our own heart. We are coming home.

For the next stage, you can use your physical symptoms to bring about a transformation: On the inhale, breathe in some physical difficulty and visualize it dissolving in your heart. On the exhale, send that ailing part your love, compassion and healing. Keep this up for as long as you want, or can, and move your awareness throughout your body, the same way. Again, you may be able to do only so much, but that’s okay. Your physical symptoms may remain much the same as when you started, but has your attitude softened? You can add another component to this stage if you wish: any pain you experience, imagine all the people who are experiencing the same pain, and when you inhale, take in their pain as well, and then let it dissolve in your heart. On the exhale, breathe out tenderness and understanding and any other calm that comes to mind and send it to all those people. You can also become creative here and send an image instead, if that makes the practice more intimate. A blanket to snuggle in or a warm hug by a loved one might be good images to send, for example. Sometimes when I include others who are in the same emotional and/or physical boat as me, I feel less isolated, less like I’m the only one on the planet that feels this way, and any loneliness I have begins to diminish or fade away. This may happen to you, too. It’s also possible that the opposite is true – that including others’ pain feels overwhelming. If that’s the case, just come back to doing the practice for yourself or breathe in that feeling, letting it dissolve and breathing out calm.

Because there’s such an intricate relationship between the emotional and the physical, you may want to include both of these steps in one. Also, if you have symptoms like I have sometimes, where much of the body is affected, you can do tonglen for the entire body as a whole. I encourage you to be creative here and throughout the practice. There are probably ways to practice that have never occurred to me that will occur to you. Trust your instincts. This practice may bring up deep sadness and you may want to cry. Please give yourself permission to do so; there is no need to be completely formal about this and tears can be so cleansing.

You may want to stop the practice right here and that’s fine. But, if you’re up for it, you can go to the next stage, which is similar to the one for loving kindness meditation, where we practice for others. Envision a loved one, someone dear to your heart, who is going through some difficulty. On the inhale, breathe in their suffering, whether it be cancer or the heartbreak of divorce, depression or a bum knee, and allow their pain, their struggle, to dissolve in your heart. Besides their suffering dissolving, allow any judgments or fears to dissolve as well. One time, when I was practicing tonglen on someone who was sick, I saw that I had judgment towards her, because at the time, she was still smoking cigarettes. I saw how this judgment blocked my compassion for her and I breathed that in, too. You may fear that by breathing in someone else’s illness, despair, suffering, that you will become depleted in the same way they are. Breathe in this fear, too, and allow it to melt within and dislodge from your heart, remembering to breathe out compassion, peace, etc.

At any point in practicing tonglen for others, you can include, just as you did for yourself, all others who are experiencing the same sort of suffering. For example, if you are doing tonglen for your mother who has Alzheimer’s, you can include all others with the same disease. By adding this piece in, we begin to expand our focus of awareness, causing our hearts to expand as well.

If you still have energy, you can move on to the next stage. Visualize someone neutral in your life; this time someone who you noticed is experiencing some difficulty. Perhaps it is the receptionist at your doctor’s office whose hand is in cast or the bus driver who seemed grumpy one morning and go through the same routine: inhaling their discomfort, letting it melt, exhaling and sending them love. If you can’t think of someone neutral who you know is suffering in some particular way, consider any neutral person – there is probably some difficulty in that person’s life, even if minor. Remember, just as in loving kindness meditation, part of the reason we do this practice in its entirety, is to awaken our heart to all people; not just those that are like us or believe the same things we do.

Then, we turn to a difficult person to practice tonglen for. Again, this can certainly be someone you know, but can also be someone in public office you disagree with or a group of people you don’t know. I have actually used my partner’s health insurance company, who has consistently denied payment on expensive medication that they have repeatedly said they would cover. When I did this practice for them, I saw how angry I was and how that anger hardened my heart, cutting me off from love. What good was hanging on to it doing for me? Although difficult for me to do, I was able to soften my heart and send them some of that soft-heartedness (soon after, they sent a letter saying they finally approved the coverage. Coincidence? Hard to say). Again, perfection is not the goal here – but being aware that we all have our areas of prejudice, fear, and judgment that are difficult to open to and to do the best we can to awaken compassion to those parts.

Instead of practicing tonglen for a difficult person, we could practice for a more difficult scenario, in order to build on our compassion. This might mean someone who is dying, or someone in constant pain. By practicing tonglen for a severe situation, we strengthen our compassion muscle, which is the gift of this practice. By imagining the most difficult suffering and bringing it into our heart on an inhalation, we are able to dissolve our deepest fears about suffering in general and can offer as we exhale, our most tender and heartfelt wish for the well-being of this person or persons in this mental or physical condition.

The next stage of the practice is to imagine all the people you have included up to this point and breathe in their suffering and breathe out compassion, imagining all of them well and whole – similar to the same stage in loving kindness meditation.

After you have finished with this aspect of the practice, you can move on to the other phases – for those in your hometown, country, and the world. The length of time you spend here depends, as usual, on your energy level and the time you have set aside for practice. When you are finished with this last part, bring your mind back to the vast awareness you experienced at the beginning of your practice.

If you have explored the entire practice, you have included all beings into your practice. In doing this, one can see that we all suffer in some way, that as human beings, this is something we all share. Tonglen puts us in touch with universal suffering in other ways, as well, as we begin to see that “my” suffering and suffering in general, all have the same component, whether it comes in small disappointments like losing our car keys to ongoing, grueling pain. Understanding this can have the effect of making us feel less alone and walled-off in our misconception that we are the only one that feels the way we do.

There are days when my suffering seems so great that the practice of tonglen seems insurmountable. You may find this is true for you sometimes. On those days, I don’t formally practice, but try to distract myself with other activities, if possible. However, I like to keep in mind the concept of tonglen to help inspire me and remind me that all suffering can serve to open my heart and awaken me to compassion. One way I do this is, I write the word “tonglen” on a piece of paper and put in on my fridge. That way, when I walk into my kitchen and see my sign, my body and mind immersed in the chaos of great difficulty, I can, for a minute, shift my awareness. And it is my profound belief that this makes a difference, not only for myself in the moment, but for great suffering everywhere. When we keep in mind the concept that all we are is energy; something scientists proclaim and something we see glimpses of in meditation, when we can shift even a little bit of suffering, we are adding a little more peace and clarity to the world.

Many practical and spontaneous ways of doing tonglen present themselves regularly to us, if we pay attention. As a result of our practice, we begin to see how we can be more connective in the world than perhaps we’ve been in the past and how that benefits us. We notice too, how often we shield ourselves from others’ pain and how we can change that.

There are times we can do tonglen spontaneously, using our own suffering, along with others’. I remember one such time when I was detoxing from a strong medication that had ceased its effectiveness for anxiety and insomnia. It took over a month to complete this process and most of that month it seemed every minute of my waking day was extraordinarily difficult, but the nights were even worse. I got very little sleep and my anxiety was off the charts.

All this was happening at the same time Hurricane Katrina hit the Gulf Coast. I watched a lot of TV during that time, because I was capable of little else, and the images I saw of all the poor, abandoned people left me feeling even more disturbed. I felt surrounded by suffering with no sense of relief. Seeing their struggle and pain only seemed to increase my own. On one day a certain story in particular haunted me: A makeshift hospital was created at the airport for some of the victims of Katrina. Because of the large number of patients and the under staffing of volunteers, a place was set aside for the most stricken and the least likely to live, while the ones who had a better chance at survival were attended to. This horrified me when I heard it and when I couldn’t sleep again that night, I remembered this story and it filled my heart with dread. How could it be that these people were left alone to die without the comfort of friends and loved ones? I tossed and turned, wondering about their own despair – what was going on with them now? What was going on in their minds at this exact hour? At the time, I was hooked up to an oxygen machine, set up as a result of a sleep study that showed I have mild sleep apnea. I laid there with my disturbing thoughts, listening to the machine whose rhythmic push-pull of air was somehow soothing – like a giant person next to me, breathing. Then I remembered tonglen and its basic teaching of breath, and that any suffering could be used to transform into compassion. Bit by bit, I chipped away at the claustrophobic, emotional state I was in. At times, waves of panic or despair would wash over me. Most of the time I was unable to concentrate on both the breathing and the transformation of pain to compassion, and many times the intensity of feeling was so great, it overtook any of my efforts. But now and then, I felt some relief from my emotional agony and also felt this remarkable connection with the people at the airport who were also lying there, perhaps facing even more despair. “My” suffering and “their” suffering began to blur and merge until they were indistinguishable from each other. I felt we were in the same room, doing the best we could and somehow, that felt comforting; I wasn’t all alone with my desperate thoughts and feelings. I also had the sense when I felt this connection strongly, and felt the depth of my compassion, that I was somehow enabling them to cope and open to this tenderness, as well. Although I still managed only a little sleep that night, something in me had changed and softened, and this had to do with my ability to meet such difficulty with the depth of tenderness it needed in order to transform.

I have noticed after many years of practicing tonglen, how it sparks in me, not just spontaneous responses like the above, but active ones as well. As an example of this, one day I went to a local store to pick up some items and saw the husband of a woman who had worked there for years, had suddenly died of a heart attack. Because I live in a small town, I knew that they had been childhood sweethearts and had been together for probably forty years or more. I imagined his suffering was great. In the past, prior to doing tonglen, probably because I had no real connection with this man, except a passing nod of recognition in the store from time-to-time, I most likely would’ve tried to avoid him, feeling awkward in his presence, because of his pain. Instead, I felt a confidence arise in me and I approached him. I looked into his eyes and spoke from my heart about his loss and even reached out with my hand. He immediately took my hand in his and spoke from his heart. I felt a true connection in that moment, and when I left, I felt something important had taken place between us, even though (or maybe, because) we were practically strangers. I believe my practice gave me the confidence to reach out and take action, which only deepened my sitting practice all the more.

This story speaks to the idea of compassion in action. We may question whether doing tonglen meditation is enough – is it really bringing about any change, except within us? Shouldn’t we be doing something more to affect change? As with loving kindness meditation, we may never know the effect we have on another, although I certainly believe there can be one. When you think about it, the same holds true for actions. We may never know how a kind word we say may affect another. Just as we may never end up telling a teacher how they changed the course of our life, others may never tell us how our efforts have impacted them. I do believe however, if we are moved to do something for another, and it’s in our capacity to do so, we might as well act on those impulses. A word of caution here; make sure you’re not acting from a place of guilt or martyred sense of duty. That’s not true compassion. In other words, if you offer your cousin a place to stay indefinitely, and then resent him, neither of you is truly benefiting from this act. As people with chronic health challenges, we particularly need to make sure our energy isn’t drained, as it can take a toll on our bodies. Sometimes we may be moved to do something for ourselves on the physical plane, like reaching out for support, or seeing a new practitioner, but even if “all” we do is self-tonglen, we are doing something very powerful. By changing our inner world, we create meaning in our lives that may not have been there before.

However we practice tonglen, whether for ourselves or others, whether in a formal practice or in spontaneous fashion, not only do we find a purpose for our suffering by developing and strengthening our capacity for compassion and empathy, but we uncover our true nature, which includes this aching tenderness and with it an awareness of the preciousness of life itself. In this way, our lives are infused with meaning.

Synapses and a Few Words More

         Tonglen: breathe in suffering, allowing it to dissolve in the heart of compassion

Breathe out compassion, peace, and tenderness. Start with self, then a loved one, a neutral person, someone (s) you’re at odds with, all of the above, your town state, country, world

Consider this: true compassion leads to true happiness and the awareness of our true nature.

Consider this: we can only begin to relieve our suffering by knowing it intimately, not ignoring it.

“Compassion practice is daring. It involves learning to relax and allowing ourselves to move gently towards what scares us. The trick to doing this is to stay with emotional distress without tightening into aversion; to let fear soften us rather than harden into resistance.” ~ Pema Chodron

Salt Heart

I was tired,
half sleeping in the sun.
A single bee
delved the lavender nearby,
and beyond the fence,
a trowel’s shoulder knocked a white stone.
Soon, the ringing stopped.
And from somewhere,
a quiet voice said the one word.
Surely a command,
though it seemed more a question,
a wondering perhaps—”What about joy?”
So long it had been forgotten,
even the thought raised surprise.
But however briefly, there,
in the untuned devotions of bee
and the lavender fragrance,
the murmur of better and worse was unimportant.
From next door, the sound of raking,
and neither courage nor cowardice mattered.
Failure – uncountable failure – did not matter.
Soon enough that gate swung closed,
the world turned back to heart-salt
of wanting, heart-salts of will and grief.
My friend would continue dying, at last
only exhausted, even his wrists thinned with pain.
The river Suffering would take what it
wished of him, then go. And I would stay
and drink on, as the living do, until the rest
would enter into that water—the lavender swept in,
the bee, the swallowed labors of my neighbor.
The ordinary moment swept in, whatever it drowsily holds.
I begin to believe the only sin is distance, refusal.
All others stemming from this. Then come.
Rivers, come. Irrevocable futures, come. Come even joy.
Even now, even here, and though it vanish like him.

Jane Hirshfield