Hope – Excerpt from the Book I Never Finished

As people dealing with the ongoing struggle with our bodies, hope is a quality that is sure to enter our life at one point or another. When we wake up to the too-familiar pain in our joints or the weakness in our heart, or whatever is still waiting for us, it is easy to touch or give into fear, despair or bitterness. Hope is a wish that arises from the heart and offers us a chance at something better and keeps us going. Hope reminds us we often do not know the outcome of our illness, that science and technology are always expanding, that there are so many alternatives out there still to try. Hope whispers to us of all sorts of possibilities, and that whisper propels us forward and encourages us to not give up.

That being said, my own relationship with hope is not always an easy one. There have been times when I’ve lost hope, when I’ve given up hope, when I’ve clung to it. There’ve been times when it seems to me that to have any kind of hope that my health would ever change for the better was a dangerous tactic to take, as it could become a set-up for disappointment and then a plunge into dark emotions.

It is a good idea to look at our own relationship with hope and ask ourselves a few questions: What are we hoping for, exactly? A cure? A healing? An improved condition? A full recovery? Should our hope be “realistic” – whatever that is? Should we let go of hope altogether, because it creates a striving in the heart that just perpetuates more suffering? Perhaps if we’re to hope for anything, we should hope for an open heart to our on-going experience… but if that’s all we hope for, does it shut us down to any physical change?

At the onset of our illness, before we understand that it is a chronic condition, most of us hope for a full recovery or cure. Let’s be honest. We want our bodies to function as well as they did before we got sick. We miss how active our lives were and we yearn to “get back into the game”. But, as time goes by and we try various treatments and practitioners, we start to see that maybe a cure isn’t in the cards for us. We begin to see that yearning for such a thing takes us out of our life and away from the possibility of experiencing any happiness with things as they are right here and now. As we listen to our body’s needs and stories with compassionate awareness, we realize what we’ve been longing for all along is a healing and that healing is a wholeness that includes everything we experience as a human being: our bodies, our stories about our bodies, our fears, desires, our ups and downs, etc. This kind of healing doesn’t mean our bodies will suddenly be cured. “Healing” and “curing” in this case, mean two different things.

It can take us a while before we come to this conclusion. We begin by exploring beneath the surface of hope where there is often fear, loss and sometimes, desperation lurking. Having the courage to meet these powerful emotions from the soft places in our heart, encourages us to cultivate a kind of hope that buoys us, rather than feeds our fears of never getting well. Through the lens of this sort of exploration, we move into the spaciousness that allows the ultimate hope, the ultimate healing: We come into alignment with our innermost essence, from which all possible outcomes are born. This kind of open hope moves us away from a fear-based one that clutches at one particular outcome. Sharon Salzberg, Buddhist teacher and author, calls this “fixated hope”. She writes: “Fixated hope”…. like hope itself, resembles faith in that both sparkle with a sense of possibility. But, fixated hope is conditional, circumscribing happiness to getting what we want… when our hope for relief from suffering is based only on getting what we want, in the precise way we want it, we bind hope to fear, rather than to faith.”

“Buddhism regards fixated hope and fear as two sides to the same coin. When we hope for a particular outcome to arise or a desire to be met, we invariably fear it won’t happen. Thus, we move from hope to fear to hope from fear in an endless loop.”

I understand that loop intimately. And I understand another kind of hope; one that takes us out of that loop and inspires us to move forward. Some years ago, I had to detox from an antidepressant I had been taking for sleep, because it no longer worked for me. The process had left me anxious and fragile and my sleep worse than ever. On top of that, I had lost hope and became despairing that anything could help me as I had tried so many different remedies and medications – some of which worked for a while and then at some point, my body would habituate to it and no longer be of any help. This kind of process was a long and difficult one – one I’ve repeated again and again – first lifting my hopes, just to have them dashed again. The fragile physical state I was in at this point, deeply affected my emotional and mental states, and not only that, the specialist I had been seeing inferred that he had run out of things to try with me. What was I to do? Seek out yet another doctor? Find a new practitioner? I felt completely overwhelmed and was in a state of great anguish. As I often do when in dire straits and can’t see my way out, I called on people from my support system. One night a good friend came over to help out and when I told her all of my fears (what if there was nothing out there for me and I’d have to live this way for the rest of my life), she gently reminded me none of us knew what was around the corner, that the future held all kinds of possibilities beyond our knowing at this time. I listened to her intently and later stood out on my deck and looked up at the dark and clouded sky. Just then, like a schmaltzy movie, the clouds parted and revealed this glowing golden moon that I hadn’t noticed before, because I had been too caught up in my own despair. In that moment, my energy shifted, and that despair left my body. And in its place, hope moved in. Soon after that, I went back to my original doctor who determined that the combination of medications I had been on might have caused a reaction in me that made my sleeping more difficult than usual.

I want to be clear here. I am not suggesting that just because I was able to shift my energy, I was able to find better solutions — there are too many variables to know why any outcome comes to pass (see my January 3, 2020 blog post Creating Your Own Reality). I am suggesting that by moving into an open hope that has no set outcome in mind, aligns us with that which will work best for us in whatever condition we find ourselves. It allows us the ability to receive a new answer, whether it be acceptance or a step in a direction we may not have considered (or noticed) before. By letting go of fear (not always an easy feat for us) we bring about a greater potential for change.

Another element we would do well to cultivate here is equanimity. Living with the ups and downs of difficult symptoms, it is easy to emotionally feel on a roller coaster as well. We’re ecstatic when our blood work comes back negative after a long struggle with cancer, only to be devastated when, six months later, those same test results come back positive. Cultivating a kind of hope that is centered in equanimity, gives us an emotional balance with which to deal with the volatility of our lives. A good example of this, is the story of the old farmer. One day his horse ran off. When his neighbors heard, they dropped by. “How awful!”, they said, hoping to comfort him. “Maybe”, was all the farmer answered. The next day, the horse came back with three wild horses in tow. This time, when the neighbors came by, they said, “What great luck!”. “Maybe”, said the farmer. The next afternoon, his son attempted to break in one of the new horses but was thrown off and broke his leg. The neighbors showed up. “I’m so sorry, what a terrible loss!”. “Maybe”, replied the old man. The following morning, two military men came by looking to draft young, able-bodied men into the Army. When they saw his son, they moved on to the next farm. The neighbors congratulated him on his good fortune. “Maybe”, said the farmer.

Maintaining a hope with this kind of equilibrium while we deal with all our physical discomforts may feel like an impossibility, but I find it a good model to look toward. After years of struggle with getting good sleep, I’ve noticed that when I stumble upon a new remedy, etc., that helps me get a decent night’s sleep, there is always something inside that asks “Will this last?”. It so far never has. I have learned to develop a “maybe” attitude. Maybe it’ll be this way for the rest of my life, but maybe it’ll be better at times, and maybe worse. Meanwhile, whatever happens, my mental and spiritual goal is to maintain an even-keeled attitude, understanding like the farmer, that all mind states pass, eventually.

You can also practice the quality of equanimity to help you along. Just as with loving kindness meditation, you can construct phrases to meditate on (see my April and May 2019 blog posts Introduction to Loving Kindness and Loving Kindness, Part II). Jack Kornfield, Buddhist teacher and author, offers these phrases:

“May I be balanced and at peace”.                                                                                             “May I learn to see the arising and passing of all nature with equanimity and balance”.

Of course, you can create your own phrases that better reflect your circumstances.

“May I meet the arising and passing of phenomena in my body with ease and balance”.

Just like with loving kindness meditation, the more you practice, the more the phrases become a part of you instead of just wishful thinking.

In the end, I have found hope to be an essential ingredient on the spiritual path of chronic illness. Hope has come to mean for me a way of holding space for all possible positive outcomes. I make sure I leave space for miracles.

On the one end of my personal spectrum of hope, I Ieave space for the possibility of deep sleep and no seizure activity, to enough sleep to keep me functioning well enough and little seizure activity. Failing that, I hope to have an attitude and a relationship towards my health that is kind, compassionate and equanimous. Hope then, is an antidote to despair, bitterness, and a closed and fearful heart.

“When my house burned down, I gained an unobstructed view of the moonlit sky.”                                                                                                             ~ Zen Poet Mizuta Masahide

 

For more information:

Jack Kornfield (equanimity, loving kindness meditation) https://jackkornfield.com/meditation-equanimity/

Sharon Salzberg (fixated hope) Faith: Trusting Your Own Deepest Experience. Riverhead Books (2003)

 

burn burnt candle candlelight
Photo by Tucu0103 Bianca on Pexels.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.

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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

 

 

A Word or Two on Surrendering; Story on Surrendering

There are times when dealing with our health concerns that surrendering comes into the picture and becomes a quality that would serve us well to cultivate. When we are waiting for our test results from the laboratory or wake up with a migraine on a day we planned to get a lot done, we learn to give up control and let go. We have learned from the past that pushing ourselves in this state only increases our pain and that worrying about the outcome of our test results only causes us more distress. Often, excruciating symptoms can bring us to our knees and give us no choice but to relinquish control and surrender.

The act of surrendering is a humbling one. We are reminded that something bigger than ourselves is holding the reins and that by recognizing this, we find a way to allow our life to unfold, instead of forcing our will onto it. Twelve-step programs have developed the slogan “Let go and let God” and turning it over to a higher power greater than oneself, when we end up getting too much in our own way to do us any good. For those uncomfortable with the word “God”, they can exchange it with the concept that we are not always completely in charge of our circumstances and may have to put into place a different way of handling our present challenges, than worry and agitation.

The act of surrendering doesn’t mean we roll over and give up and do nothing. It means we allow energy to move through us and not manipulate it, thereby allowing The Great Mystery to unfold and leaving room for spirit to come into our life. When we become open like this, our intuition can be tapped, new solutions can come to us or just the understanding that for now, maybe all we need to “do”, is rest or putter around in the garden that day or get some support from a friend.

Numerology Guidance Cards by Michelle Buchanan
Surrender

Surrendering control may be something we have to do over and over again, if we are particularly anxious; like waiting for those test results. Surrendering takes practice like any other spiritual discipline and we may need constant reminders. We may notice that the way we are going about finding an answer to resolve our health issue has become too obsessive, i.e., going from one practitioner to the next without taking time to reflect on why this might be happening in the first place. It may be better for us in this case, to slow down a little and recognize that underneath this behavior is fear, and we might be better off to explore that fear and see what that has to teach us, rather than go about our health care in a frantic, grasping way. When fear rises again and again, surrendering can become the anecdote that calms us down.

 

Story on Surrendering

When I was in my twenties, I lived communally on land, with a small group, during the 70’s. I loved living there at the time, but for various reasons, the community was breaking up and individuals were moving on. I was unhappy with this idea, but I had no choice but to move on, too. I realized I relied on the others to be there in case of a seizure, but who could I rely on now? On top of that, with the stress of the dissolvement of the group and the stimulation that came from living communally, I had had a few seizures and came to the conclusion that I couldn’t take care of myself. Appallingly, it seemed to me, my only option was to pack up all my things and go stay with my parents – the very people whose way of living I felt estranged from and who I felt lived the opposite to what we had been trying to create on land, where I had been living. Not only that, but I needed help packing and couldn’t fly on my own – my mother had to come and get me! For a young woman out in the world on her own, developing new ideologies with others that branched away from the norm (with a lot of judgement towards others, I might add), this was beyond humiliating!

Once at my parents’ house, it took months for me to fully recover. Not only did I have to put aside my youthful ideals, but I had to let go of the elemental independent way of living we all usually take for granted. Most of the time, I couldn’t prepare meals for myself; my mother did. I couldn’t drive, so I had to rely on my father to get anywhere. Some part of me knew I was fortunate; that I had loving parents who could take me in, but my false pride wouldn’t allow a full appreciation of this fact. I chafed against their ways that I perceived as outdated and steeped in sexism, but felt I had to keep my mouth closed, because I was reliant on them for my basic needs. At times, I resented this, making it easy to resent them.

Although I wasn’t very good at it, I was forced to surrender. I had to put aside my beliefs and my prized independence in order to get my needs taken care of. I felt ashamed and humiliated to be in this position, and because of this, couldn’t fully give in to the feeling of surrendering, which made everything that much harder.

More than twenty years later, things have changed a great deal. I am more apt to be honest with myself about my limitations and needs, although, there often seems a layer of resistance before I let go and accept my circumstances. I no longer carry around the arrogance I used to have in my twenties that made me feel I was somehow more evolved than others. Having had to, time and time again, ask for help over the years, has led me to replace humiliation with humility and a letting in of others in my life I may not have otherwise, which expands my spiritual path that much more. When we only let in those who have the same ideology and lifestyle as ours, we develop a narrow way of being and living. I believe I have a  more developed sense of gratitude in general, because of having to let others in, by way of caregiving for me. All this I’ve gotten from the gift and act of surrendering.

 

Citations:

Buchanan, M., Numerology Guidance Cards. https://www.michellebuchanan.co.nz/numerology-oracle-cards/

Hazelden Betty Ford Foundation. Letting go of our need for control frees us. https://www.hazelden.org/web/public/hff11022.page

 

 

 

 

Life as a Crip

I wrote the following as a writing exercise, and ended up liking it. I realized, too, that it is based very loosely on my partner, who deals with chronic pain.

Life would be much easier if I were a cartoon character. Let me explain: I’ve been disabled ever since a car accident in 1972. A drunk driver slammed into me, and I haven’t been the same since. My right leg got crushed and I have to walk with a cane. I’m always in pain. Plus, I ended up with some brain damage, (my girlfriend Ellie teases me – friendly like, that I’m not right in the head) so I can’t carry on long conversations or I get overwhelmed, and my memory is for shit. So, I’ve more or less become a hermit. People tire me.

I spend most of my time watching cartoons and sometimes I get so involved, I think I’m part of the show. I like Sponge Bob a lot – but mostly, I like the old ones, like the Flintstones or The Jetsons. So, if I were a cartoon character, I wouldn’t feel like I had to fit in the way people expect you to. I could go beneath the sea like Sponge Bob, or soar through space in my space mobile, like George Jetson.

Of course, I like all those super heroes too, because they can do whatever they want, whenever they want, and people look up to them. They can save the day instead of waiting around to be saved. Ellie asked me once if I could have one super power, what would it be. I didn’t have to think about it – I’d have the power to be invisible. That way, nobody would bother me, and I wouldn’t have to answer to no one. Ellie told me she thought I’d say being able to fly, and I could see her point. If I could fly, I wouldn’t have to drag this shriveled old leg around anymore.

Ellie is the only person I want to have anything to do with. She seems to know when to leave me alone (which is most of the time), and when to hang out with me. She puts up with the TV and my cartoons, she laughs at my stupid jokes, and sometimes, I actually think she enjoys my company.