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)

 

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Another Excerpt from My Never-finished Book – “Creating Your Own Reality”

I am a man and I am with a few other men. We are all wearing coarse, long, brown tunics. We are in a desert-like place and there is very little vegetation. We are running away from somebody or something and are all very frightened. We want to find a place to hide, but there is nowhere to do so. I feel a strong sense of doom. Other men come upon us; they seem to come out of nowhere. There are many more of them than us. I know we are done-for. The next thing I remember is sharp, stabbing sensations through my wrists, like someone has driven something through them. The fear takes over and becomes pure, raw terror, then I feel myself spinning, spinning, spinning. I realize at some point that I am dead, which frightens me even more, if possible. I keep spinning in fear for what seems like forever. I then slowly think of how I can stop feeling so frightened. I remember love. I try to conjure up the feeling of love, which is hard to do in my state of mind, so what I do manage to summon is off the mark; a kind of caricature of love.

            Then some time elapsed, because the next thing I remember is that I am in a new body; once again, a man. I am young, probably in my twenties. I am what could be called “The Village Idiot”: I have little intelligence, but am overly affectionate in inappropriate ways, like going up to strangers and hugging them.

I wake up. I have been in a deep sleep, which is highly unusual for me. I don’t think I’ve moved all night. I understand that what I just went through is not really a dream but two past life experiences. I have no doubt about that. In fact, I can’t even call it a memory, because what happened is I somehow entered those two time periods when I was in other bodies. I am also very clear that I have a seizure disorder, in part, because of the fear and terror I experienced from when I was killed and I understand that in this life, I have the opportunity to work through that fear. I also understand that the “Village Idiot” lifetime was a result of having conjured up a cartoonish feeling of love. All these realizations enter my mind at a rapid rate, and I am completely overwhelmed.

Years Later

There was always a part of the first life that bothered me: How exactly did I die? What was that sensation in my wrists? What was going on? I have since learned that during the time of Jesus and other times throughout history, crucifixion was a common form of punishment and that stakes were put through the wrists, as well as the palms and feet. When I heard of this, I felt this is what happened to me. I was also quite sure that what had actually killed me wasn’t anything physical, but that I had died from sheer terror.

It is through this direct experience I had years ago, that I learned how it is that we can create our own reality. What is a “seizure disorder” and my tendency towards worry and anxiety during stressful situations in this lifetime can on one level be seen as the embodiment of terror that spun me out of my body so long ago. I also understand that instead of thinking that I am being punished for “bad karma” from a past life, I see it as an opportunity to work through that fear and come into the full power of my being. That experience was so powerful for me. I can never dismiss it as just a dream, but a way for me to directly experience different concepts: creating one’s own reality, karma and past lives. I am very grateful for these understandings.

However, the concept of creating our own reality is a very sensitive and complex subject; one that’s certainly worth exploring, but with care and compassion.

Recently, I’ve become aware of a resurgence of this belief; the premise of which is wherever we are in life, we’ve attracted  our set of circumstances with our thoughts, whether conscious or unconscious. From this point of view, it therefore follows that we create any illness we have. If we want perfect health, they say “All we have to do” is to uncover our negative beliefs and replace them with positive ones, focusing on good health.

While I can see the truth to this, based on my own experience, I also believe the verdict is out on just how much we can create our own reality to our liking. While it’s true that there are people who have had miraculous recoveries from their illness, due to focusing on positive awareness, there are many who have not, and I don’t think it’s due to their not trying hard enough, as sometimes is implied. It’s also true that we only use a small portion of our brain, and who knows what would be possible if we used more or all of it? Investigating our belief systems and affirming a positive outcome for our health is always worthwhile, yet I think it’s important to be unattached to the outcome of our efforts and just when they might be manifested. I have seen psychological harm occur in myself and others when, after much effort, we still remain ill. We then start to question our abilities to heal ourselves, and fear, judgement and doubt sneak in: Just what dark secrets are still lurking in our psyche? Have I tried hard enough? Am I good enough? Am I being punished for a past life? IT is difficult enough to deal with our health challenges without producing new emotional ones on top of it.

When the idea that we create our own reality first started spreading in the alternative community, it was quick to catch on and in many ways, was very beneficial. It took the focus off of the idea that all illness resulted from external forces and a new examination began. How did beliefs and emotional mind states create disharmony in the body? The mind-body connection was explored and there was a lot to uncover. One of my problems with this concept is that it became over-simplified and took over all the other ideas instead of being one of many of the influences of the body’s breakdown.

And there are many others: The environment, an accident, genetics, diet, to name a few. One could argue that there have been recoveries of the body’s health whatever the initial cause, by using techniques of the mind, but there are many people who have used the same techniques without success. We all know people who have done all the “right” things: eating healthy, exercising, meditating and examining oneself psychologically and spiritually, and still struggle with their health; just as we know people who do all the “wrong” things: smoke cigarettes, drink excessively, or have a poor diet, that have no health problems and live into their nineties. The truth of the matter is we don’t always know why some people get better and some people don’t. We are complex and multifaceted beings and what works for one person may not work for another. To declare that “disease cannot live in a body that’s in a healthy emotional state” or “you can think your way to the perfect state of health” is just not always true, and certainly not because someone is more advanced spiritually than another, as seems to be implied.

Often, the way the concept of creating your own reality is presented is that we have total and absolute control of it; in fact of anything in the universe. To me, that conjures up the image of an all-powerful God, ready to intervene in any situation and create whatever (S)He wants. From what I observe, I don’t see that we or God have that kind of power. I think a better way to explain this is that we are cocreators of reality. That is, we cocreate with that which is larger than ourselves (God or Spirit), along with being affected by our DNA, other people, societal beliefs, our environment, etc. Therefore, we can influence our reality, we can direct our energy, we can become channels, but there’s a mysterious element involved in the alchemic process of manifestation that’s beyond our complete understanding

I’d also like to state the obvious here, and that is that being in a body is a limited experience. Even if we have exemplary health all our lives, at some point, we die and shed these bodies. I believe we are spiritual beings adapting to physical form and part of what we are learning here is how to live within the confines of that form. Therefore, it also follows that what is possible to create in this physical realm is also limited.

Now, let’s investigate for a moment, those implied beliefs that our health challenges could be due to bad karma from a past life and if we just focus enough positive energy on ourselves, we could heal our bodies. Buddhist teachings state that some illnesses are due to our past lives, and how we handle these conditions will not show up until the next life. Now, this viewpoint might not always be true either, but it gives us a different perspective for a moment, doesn’t it? We don’t all heal in the body in one lifetime. In fact, my own spiritual teacher has suggested to me that the reason we have many lifetimes is that it takes us that long to integrate the many lessons we need to learn.

Another Buddhist perspective is that instead of seeing illness as bad karma from a past life, think of it as karma ripening, and therefore, something one can be grateful for, so that now we can be ready to explore the teachings that come with it and grow spiritually. This viewpoint allows us to see illness as an opportunity and a sign of evolvement, not a punishment. In this sense, we are spiritual warriors, not victims or spiritually deficient in some way. We can now shed any shame that we’ve taken on due to statements like : “Love and gratitude can dissolve any disease”, after we have diligently practiced those very attitudes and still remain ill.

I have heard it said that to maintain perfect health, one must “think perfect thoughts” —- but what does that mean, anyway, and how does one go about doing that? From my many years of meditating, I have come to see that our minds are full of all kinds of thoughts from “I wonder what I’ll eat for lunch today” to “I hope Uncle Irving doesn’t get drunk again this Thanksgiving”. Would either of those qualify as an “imperfect” thought? And, to be mindful of our thoughts and how they affect us is one thing, but to try to control them as this way of thinking suggests to me, is another thing altogether. Have you ever tried not to think certain thoughts? They just persist with a vengeance. I prefer a gentler technique, which is to watch one’s thoughts and simply allow them to be, understanding that who we are is beyond thought. We all have all kinds of voices in our minds; ones that praise, ones that criticize, ones that doubt, ones that warn, etc. My experience tells me that we are better off understanding that that’s how the mind works, instead of trying to manipulate, which only backfires on us anyway. When we allow all our voices simply to be, we develop an expansive mind; one with humor and delight: “Oh, here comes that thought about my father again!” and cultivate a sort of benevolent tolerance to whatever arises, creating a healthier approach to not only our minds, but to life itself.

The one-pointed view that we each create our own reality, besides being over-simplified, often feels cold-hearted to me – an attitude that we’re here on our own; you create your reality, I create mine, and if one of us ends up in difficult circumstances, we’ve brought it upon ourselves, and it’s up to us and only us, to bring ourselves back to some imagined state of perfection. I feel this misses the mark: It doesn’t speak to our interconnectedness, the fact that we need each other, or rely on one another. It bypasses our humanness. It doesn’t speak to the deeper questions we could be asking ourselves. Yes, it’s good to question if we have had a part in creating our illness (or any difficult situation), but let’s add other questions to the mix, like: How can I use my illness to become a better human being? How can this experience deepen my capacity to love? How can I learn to love unconditionally? How are we all interconnected? How can I tap into my innermost self?

I’ll end with a quote from Marianne Williamson’s book A Return to Love.

“Our bodies are merely blank canvases onto which we project our thoughts. Disease is loveless thinking materialized. This doesn’t mean that people who have contacted a disease thought lovelessly, while the rest of us didn’t. Great saints have contacted terminal illnesses. The lovelessness that manufactures disease is systemic; it is laced throughout racial consciousness. Which soul manifests illness is based on many factors.                                                                                                                                       Let’s say an innocent child dies of environmentally-based cancer. How was lovelessness the problem here? The loveless thinking was not necessarily in the child, but in many of us who, over the years, lived without reverence for the environment, allowing it to be polluted by toxic chemicals. The child’s physical sickness resulted, indirectly, from the sickness in someone else’s mind. Our loving thoughts affect people and situations we never dream of, and so do our mistakes. Since our minds do not stop at our brain casings – since there is no place where one mind stops and another starts – then our love touches everyone, and so does our fear.”

A Journey into the Dark

Sometimes things come together: I sleep well enough to enjoy my day, and, after checking my daily to-do list, see that there is nothing that really needs to get done. It suddenly occurs to me that I could visit my friends Jesse and Shay, who live a little more than an hour north from me, and have my caregiver Jenna drive me.

When she arrives, I tell her my idea and find out she’s up for it. Let’s get out of town!

The day is perfect for an outing. It’s nearly the end of August and there’s a bit of coolness in the air, the heaviness of summer lifting for a bit.

We leave town and immediately get on the highway. We pass steep hills full of leaning redwoods and pines and I feel my senses awaken. Traveling – even a short trip out of town, always opens up my world, reminding me there’s more to life than the inside of my mind and the confines of my home.

Image T Redwoods

Jenna and I converse on the way there. She’s only been working for me for a short time and this gives me a chance to get to know her better. She tells me a little about her unhappy childhood – growing up as an only child in a small town outside of Madison, Wisconsin and how she tended to her lonely spirit by climbing trees and watching all kinds of critters. I learn that she has moved around a lot since an adult, until she arrived in Mendocino County ten years ago and realized she had finally found her home.

I tell Jenna I need a break from conversing, knowing that when we arrive at Jesse and Shay’s, there’ll be plenty of it. I don’t want my brain to go on over-load before we get there and spoil the visit.

I turn and look out the window. We are passing through the tiny town of Laytonville, which holds not a whole lot more than a gas station, a general store and a few small restaurants. Old hippies live here side-by-side with rednecks pretty much amiably, it seems to me.

The road flattens out as does the scenery – there are less trees here, revealing gentle hills that are golden brown from parched grasses.

Finally, we reach Bells Springs Road and I direct Jenna to turn right onto it. The car immediately climbs, pavement turning to dirt and gravel. The washboard road jostles our bodies as we drive up and up, rounding one curve after another, a cloud of dust following. Occasionally, there is a break between madrone and manzanita on the right, revealing spectacular views of ridges spreading out for miles, with no houses in sight.

Eventually, just as I am becoming impatient, the road straightens out and we arrive at their driveway, which is steep but short, guarded by a large gargoyle leering at us at the base. We park at the top at level ground and get out.

Image gargoyle Strasb Cath

I am always struck by the quiet here. I pause and take a moment, breathing in the stillness, which is settling after such a long and bumpy ride.

We stretch our legs and look around before nearing the house. Two large goddess statues line the pathway, almost as tall as full-grown women. Flat rocks nearby them have been carefully stacked creating a natural tower.

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Photo by Pixabay on Pexels.com

The house is unusual – what I would call a Northern California home, probably built back in the 70’s. It is weathered and rambling with two stories and sits amongst trees. Two decks are connected by a narrow walkway, which leads to the front door. As we walk in that direction, we pass potted plants and a large stack of wood, forcing us to walk single-file.

I hear voices call out and see Jesse and Shay out on the front deck. When Jenna and I reach them, I introduce everybody, then hug my friends hard – it’s been too long since we’ve gotten together.

A big oak tree bends over the deck, one of its huge branches almost touching it. Beside us is a carefully and lovingly constructed ornamental terraced garden. There are small, meandering pathways and a tiny pond with a run-off that’s gently burbling. It’s truly a thing of beauty.

Gardening has always been one of Jesse’s passions Faerie GardenIMG_3808 and has kept her busy over the years, but now that she’s in a wheelchair, she can no longer tend to this incredible creation of hers and has taken to making what she calls “faerie gardens”, that line the deck.  These miniature gardens that she has worked on meticulously are made up of tiny plants made to look like trees, with elfin bridges, houses, and even people, and not one of them is the same.

Faerie GardenIMG_3751 They reveal the patience Jesse has, Faerie GardenIMG_3811 which is one of her most admirable traits, along with her great intelligence.

We take our seats and immediately launch into deep conversation. I have known these women for a very long time, so there is no need for small talk and pleasantries. Although I haven’t seen them for months, in many ways it feels like yesterday.

Inevitably, the conversation turns to health. Last year, Jesse was diagnosed with cancer. Surgery became necessary and she has recently finished rounds of chemo. Her hair has just started coming back and when I rub my hand across her head, I’m surprised with how soft it is. She talks about frequent doctor visits, anticipating test results, and the hardship of having to go to Ukiah for appointments, almost 2 hours away. As she talks, I check out her appearance more closely and realize she’s lost a lot of weight, which concerns me. Nevertheless, she seems cheerful and talkative, and my concern, at least for her emotional well-being, begins to wane.

Locally: Cancer Resource Center of Mendocino County https://crcmendocino.org/

It’s Shay, really, that worries me more. She has suffered from depression since she was a teenager. Her voice is often flat, and she sleeps a lot and has little vital energy. Jesse’s cancer has certainly added to her mental state, and so our talk turns to her struggles.

For information and to learn the symptoms of depression: https://www.apa.org/topics/depression/

She has been on antidepressants for some time. At first, she had a hard time adjusting to one medication, but then they gave her some relief. But not long after, the effects abated then stopped working altogether. The doctors wanted to increase her dosage, which she did, and that helped briefly, but then again, stopped working. Discouraged, she cut back, but found it difficult on her body and even though she’d like to go off altogether, it became too hard to do, so she has given up and stayed on them, even though she no longer feels any relief.

She has also gone to therapy, read countless books on depression, quit sugar altogether and changed her diet. But all this has had no effect on her body/mind.

“The only thing that really helps”, she says, “That really gets me out of my head is being creative.” She closes her eyes for a moment. “I can get in this zone and it takes me away from everything and into this other world.”

Shay is an incredible artist, with many interests. Her main focuses have been jewelry, painting and drawing. Her studio is a work of art itself: Sketches are set up here and there. Cups and cases hold pens, colored pencils and brushes in various shapes and sizes. Tiny drawers hold all sorts of beads, necklaces, chains and clasps. Easels lean against walls. There are leather-bound journals with her creations in them, reams of paper for watercolors, as well as others’ artwork – from small sculptures to paintings to help inspire her.

After Shay speaks, Jesse adds, her voice becoming soft, “What’s hard for me is seeing how her depression affects her self-esteem. She’s so damn hard on herself!” Tears spring to her eyes.

I know this to be true. Shay constantly puts herself down, downplays her artistic abilities, compares herself to others in many areas of her life, and often, in her mind, coming up short. It’s painful for me to see this in her. I love my friend dearly and know her not only to be talented, but extremely kind, sensitive and thoughtful. I only wish she could turn those qualities towards herself.

Jenna chimes in, “Well, I’m not clinically depressed, but I have my days and my cycles with it. When the days turn into weeks, I start to microdose myself with magic mushrooms. It works for me. It interrupts the cycle.”

We’re all interested in what she has to say, and barrage her with questions. What kind of mushrooms? How much do you take? Do you get high? Can you take it with antidepressants and other medications?

Jenna answers carefully. “I can only speak from my own experience. I take a teeny weeny bit of psilocybin and I don’t get high. But, I feel…” She thinks a bit, “I feel better, is all I can say. Different. Something shifts inside, and my brain resets itself.” She shrugs, as if to say, “That’s the best I can do to explain myself”. “And I want to be clear here: I don’t know if it will work for you. I don’t know if you can take it with your meds. I don’t have all the answers.” She shakes her head with a sad expression on her face. “And unfortunately, I’ve run out of mushrooms myself and don’t know where to get any.”

We’re all quiet, taking in all this information.

“I do think,”, Jenna adds, “That if you ever try it – don’t do it alone. Have someone there with you. I’d be willing to do that with you, if you’d like.”

“But you don’t have any,”, Jesse says, making sure. “No. But I’m looking. I could let you know if I find anything.”

Shay sighs, sounding weary, but says “Well I like the idea of taking something natural…” She drifts off, “I’m not sure if I’m up for something new.”

I understand this reaction. I’ve tried so many other things over the years and got my hopes up: Maybe this will work. Often, I don’t get the results I want, or it makes me feel worse and/or gives me intolerable side effects. Even something as simple and benign like vitamin B-12 to help feed my nervous system, took me a long time to try out. I just did not want to be disappointed yet again.

There’s a lull in the conversation and suddenly, seemingly out of nowhere, their scraggly black, Noche (with a tiny spot of white on the tip of his tail), shows up demanding attention, putting smiles on our faces. More shadows have moved in on the porch, taking over most of the sun spots. As much as I don’t want to leave, it’s best that we get on the road before it becomes too dark.

We reluctantly say our goodbyes and as we pull out of their driveway, I look back and see Shay holding Noche and waving at us.

We’re quiet as we head home as I process the visit. Seeing these beloved friends always warms my heart, but breaks it, too, if that’s possible. I realize I want to “fix” Shay, as others seem to want to “fix” me, but I know it’s not possible and that hurts. Maybe, if Shay wants to try them, those mushrooms will help, I think, as we whiz by trees and hills. And maybe they won’t.

Microdosing – disclaimer:  I am not endorsing the use of illegal or potentially dangerous drugs/medications. The subject of microdosing is only to inform my readers.

Psychedelic Times: “How to Find Psychedelic Treatment for your Psychological Disorder” Posted by Wesley Thoricatha April 28, 2017  Articles, Psychedelic Integration, Psychedelic Therapy 3 https://psychedelictimes.com/find-psychedelic-treatment-psychological-disorder/

“It’s also important to know that not all psychological disorders lend themselves well to psychedelic treatment. While there is no scientific basis for the propaganda that psychedelics can “make you crazy,” it has been suggested that those with latent schizophrenia could have their condition triggered early by a strong psychedelic experience. Keep in mind this is still a new frontier of research, and people with certain medical conditions or on certain medications should absolutely not take certain psychedelics. Any properly run treatment clinic will have a full physical and mental health screening before treatment, and walk you through any  contraindications that may be revealed. We do not endorse any illegal behavior, but from a harm reduction perspective, anyone who chooses underground treatment should exercise extreme levels of research, discernment, and safety precautions throughout the process.”

“Finding Integration Support – Beyond the psychedelic journey itself, integration of the experience after the fact plays a critical role in ensuring that the insights, progress, inspiration gained are translated into daily life in a sustainable way. Whether you are fresh out of an underground ayahuasca ceremony that helped you deal with childhood trauma, or a recent outpatient of an iboga center that helped you detox from an opiate addiction; a few weeks or months of integration support from someone who understands psychedelic treatment is immensely beneficial in securing your new goals, perspectives and commitments.” …

“Releasing the Stigma – One of the most insidious aspects of mental illnesses is the stigma that surrounds them. Despite the statistics that show how common these disorders are, our culture still often adopts a “toughen up and go it alone” approach, leading many to isolate themselves and be fearful of speaking up about their condition, much less seek help. Psychotherapy, prescription medications, and conventional rehab centers do help many people stabilize their lives, but sometimes these routes are not enough to fully eradicate the pain, trauma, and stress that lay at the core of the disorder, leading people to simply numb their symptoms without seeking true healing.” “Radical shifts in behavior, self-image, and wellbeing are something that psychedelics excel at when used appropriately, but not everyone is able to travel abroad for psychedelic treatment or willing to find underground options. The single most important thing that anyone suffering from an addiction or mental disorder can do is to speak up about it to their loved ones and seek help. Shame and stigma surrounding these issues should be forever discarded, as these conditions are an  integral part of the human condition, and everyone faces stress, challenges, and addictive habits in their own way.”

Glamour Magazine website: “Microdosing, Depression, and the Trippy Future of Mental Health Treatments, Psychedelics are a fringe frontier of mental health treatments. But are they safe?” By Deanna deBara, September 5, 2019 https://www.glamour.com/story/microdosing-for-depression-does-it-work

… “Carina*, a 59-year-old therapist in Oregon, sees the ripple effects of the anxiety and stress of our current cultural climate every day in her work—and in her personal life. She has struggled with depression for much of her career, managing it with regular therapy sessions and movement practices like yoga and dance, but when she found herself struggling with a particularly challenging depressive episode in the wake of the #MeToo movement, she began exploring alternative treatment modalities.”

“That’s when she was introduced to microdosing for depression. “So much of depression is feeling stuck,” says Carina. “Microdosing has helped me get out of preservation mode; it helped me get out of the stuck places and see that there are options.”

“Shrooms (aka psychedelic mushrooms) and LSD have a rich résumé of providing a hallucinatory high, and we’re in the midst of a psychedelic resurgence. The recent interest in psychedelics isn’t a throwback to the ’60s so much as it is the potential future of mental health treatment—especially for depression and anxiety.”

“The goal of microdosing is not to get you high. As the name implies, the practice involves taking a small amount—a microdose—of psilocybin (in the form of mushrooms) or LSD every few days. Unlike higher doses of psychedelics, which typically produce the “trip” experience these substances are most known for, the effect of microdosing is much more subtle. Most people start with “around 10ug of LSD (around a tenth of a tab) or 0.1g of dried psilocybin mushrooms,” according to The Third Wave, a psychedelic education resource. (The “right” dose varies from person to person. You should never take any substance without consulting your doctor first.)”

“Psychedelics aren’t legal—they’re currently classified as Schedule I drugs by the U.S. Drug Enforcement Administration, meaning there’s “no currently accepted medical use and a high potential for abuse.” (For the record, cannabis is also classified as a Schedule I drug by the DEA.) That poses some considerable risks. Because psychedelics aren’t legal, they aren’t regulated. There’s no way of knowing what you’re getting, where it’s coming from, or how strong it is, which can put your safety in jeopardy.”

Medical News Today “Psychedelics: Risks and benefits of microdosing revealed: New research, published in the journal ACS Chemical Neuroscience, finds both potential benefits and risks of using psychedelic microdosing to treat mental health problems. The study reveals effects on cognitive skills and sociability, as well as metabolic and neuronal consequences.” By Ana Sandoiu on March 4, 2019 https://www.medicalnewstoday.com/articles/324609.php#1

“An emerging body of research is making a case for using psychedelic drugs to treat mental health issues.”

“For instance, two studies published last year showed that psilocybin, the active psychedelic compound in magic mushrooms, alleviated symptoms of treatment-resistant depression.”

“Moreover, the psilocybin did so without causing any side effects of conventional antidepressants. Such side effects typically include emotional blunting or apathy.”

“People who use psychedelics to improve their mental health and boost their overall well-being tend to do so with a technique called microdosing. Taking microdoses of a psychedelic drug means taking only a fraction of a dose that is required to have a full-blown psychedelic experience, or “trip.”…

“The lead researcher is David Olson, Ph.D., an assistant professor in the departments of Chemistry and Biochemistry and Molecular Medicine at the University of California, Davis.”

… “conflicting results may suggest that an acute dose of psychedelic substances affects the brain differently from intermittent microdoses.”

“Side effects notwithstanding, say the authors, the current results are promising because they suggest that researchers can separate the psychedelic effects from the therapeutic ones.”

“Our study demonstrates that psychedelics can produce beneficial behavioral effects without drastically altering perception, which is a critical step towards producing viable medicines inspired by these compounds,” says Olson.”

“This is the first time anyone has demonstrated in animals that psychedelic microdosing might actually have some beneficial effects, particularly for depression or anxiety. It’s exciting, but the potentially adverse changes in neuronal structure and metabolism that we observe emphasize the need for additional studies.” David Olson, Ph.D.”

Refinery29 – “Can Microdosing Psychedelic Mushrooms Curb Your Anxiety?” By Cory Stieg, August 7, 2019 https://www.refinery29.com/en-us/2019/08/238497/microdosing-psilocybin-mushrooms-benefits-depression-anxiety

“Microdosing, or taking tiny amounts of a drug daily, does more than just get people mildly high. Specifically, psychedelics such as LSD (which is very similar to psilocybin, pharmacologically speaking) act on the neurotransmitter system, serotonin, which is widely used in traditional antidepressant drugs, says Harriet De Wit, PhD, founder and primary investigator in the Human Behavioral Pharmacology Laboratory at the University of Chicago. “So, there is some neurochemical rationale for the possibility that it improves mood,” she says. Compared to traditional antidepressants, which can take weeks to take effect, microdoses of LSD have been shown to have marginal subjective effects after just one administration”, she adds.”

“All of this points to the greater need for research into promising drugs like psilocybin. Most experts agree that psychedelic drugs have a lot of potential — either taken in microdoses or in combination with psychotherapy with psychological guidance. “This is an exciting new chapter in psychiatric research,” Dr. De Wit says.”

 

Gargoyle Image from https://pixabay.com/photos/gargoyle-cathedral-strasbourg-1663459/

Click the link below for cancer centers in your area. National Cancer Institute: NCI-  Designated Cancer Centers https://www.cancer.gov/research/nci-role/cancer-centers

 

Faerie GardenIMG_4051

 

 

 

 

 

 

Book Excerpt “I Am…”

The following is an excerpt from I Am, I Am, I Am – Seventeen Brushes with Death – a Memoir by Maggie O’Farrell. She had many brushes with death and this excerpt is about her recovery from encephalitis. Her description of recuperation is brilliant.

“Writing about this is hard, not in the sense that it is a difficult time for me to revisit. It’s not that it’s unwieldy or painful material to think about or mould into sentences and paragraphs. It’s more that the time I spent in hospital is the hinge on which my childhood swung. Until that morning I woke up with a headache, I was one person, and after it, I was quite another. No more bolting along pavements for me, no more running away from home, no more running at all. I could never go back to the self I was before and I have no sense of who I might have been if I hadn’t contracted encephalitis as a young child.

The experiences you live through while gravely ill take on a near-mystical quality. Fever, pain, medicine, immobility: all these things give you both clarity and also distance, depending on which is riding in the ascendant.

I recall my encephalitis, in its most acute phase, in flashes, in staccato bursts, in isolated scenes. Some things are as raw and immediate as the moment they happened; these, I can inhabit as myself, in the first person, in the present tense, if you like. Others I have almost to force myself to confront and I watch them as I might a film: there is a child in a hospital bed, in a wheelchair, on an operating table; there is a child who cannot move. How can that child ever have been me?

Of its aftermath, the rehabilitation, I have a stronger sense. The coming home from hospital, the weeks and months of being at home, in bed, drifting up and down on currents of sleep, listening in on the conversations, meals, emotions, arrivals and departures of family life below. The visitors who came, bearing books and soft-toy animals and, once, a man from over the road bringing a basket of baby guinea pigs, which he let loose in my bed, their tiny, clawed, panicked pink feet skittering up and down my wasted legs.

Convalescence is a strange, removed state. Hours, days, whole weeks can slide by without your participation. You, as the convalescent, are swaddled in quiet and immobility. You are the only still thing in the house, caught in stasis, a fly in amber. You lie there on your bed like it draped stone effigy on a tomb. As the only sound you hear is that of your own body, its minutiae assumes great import, becomes magnified: the throb of your pulse, the rasp of hair shaft against the cotton weave of your pillow, the shifting of your limbs beneath the weight of blankets, the watery occlusion when eyelid meets eyelid, the sylvan susurration of air leaving and entering your mouth. The mattress presses up from underneath, bearing you aloft. The drink of water waits beside your bed, tiny silvered bubbles pressing their faces to the glass. Distances that used to appear minor – from your bed to the door, the stretch of landing to the loo, the dressing-table to the window – now take on great, immeasurable length. Outside the walls, the day turns from morning to lunchtime to afternoon to evening, then back again (O’Farrell, 2005, p. 226-228).

 

 

Chronic Illness and Spirituality

Introduction

            I haven’t read many blogs or read much of the ones I’ve looked at, because my sensitive nervous system becomes too agitated when online. I also haven’t seen something that has sparked my interest on the topic I was looking for; chronic illness & spirituality and how they intersect. Therefore, I thought I’d start my own blog with the help of a caregiver who will set it up and type out all my entries.

I’ve written a lot about chronic illness & spirituality, particularly about my own experience which includes seizure, anxiety and sleep disorders. I even tried to write a book on the subject but found it too much for me to pull off. I thought a blog might be a better way to express myself – more manageable. This way too, I could include essays, stories, poetry and journal entries, and in this way, hope I can connect with others, perhaps starting “conversations”. My caregiver could read or print out any responses. This too, would give me a sense of purpose and a project to focus on that I could carry off.

So, I will start with the following entry – an excerpt from my “book”.

Excerpt from My “Book”

MEMORY:  THE JOURNEY BEGINS

I am thirteen and in the eighth grade and it is recess.  It is raining, so instead of going outside, I am in the classroom watching a few classmates pitch pennies against the wall.  The next thing I know, I am waking up in the nurse’s office groggy, confused and with a splitting headache.

My parents are told I went into convulsions.  Although they say nothing about what they are feeling, I feel their worry tighten around me like a pack of nervous dogs.  I feel no concern myself — after all, the next day after sleeping deeply I am fine and feel “normal” —what’s there to be afraid of?  However, my mother and I go to a doctor who refers us to a neurologist, and I take a test called an EEG (short for electroencephalogram) where wires are attached to my head and my brain waves are recorded.  Nothing unusual shows up in the results.  The incident remains a mystery. 

But not for long.  That summer I have another episode.  This time I have a feeling before it (what I later learn is called an aura) and a not unpleasant sensation of spinning out of my body—much like the feeling younger children get after twirling around and around.  Again, I come to groggy and headachy and all the muscles in my body ache like I’ve run a marathon.

This time my parents witness me convulsing, which of course escalates their fear.  Another appointment for an EEG is made.  Before I have a chance of going in for the test, I have another episode.  At this point I am still unaffected emotionally and don’t understand my parents’ mounting agitation.  Like the second incident, I get a split-second warning and then again feel the rush of spinning out of my body.  Yes, I come out of it disoriented and by body aching, but again the next day I am fine.  It never occurs to me that this could turn into any great difficulty.  Up until now I have been quite healthy and vivacious, the thought never enters my mind anything would change that.

This time when I take an EEG, the brain waves show up very spiky.  I am given a diagnosis:  epilepsy, and I am put on medication.  Unbeknownst to me, I have taken my first step onto the path of chronic illness.  My life has changed forever.

INTRODUCTION AND INITIATION TO LOSS

It took me many years before I realized my condition was chronic.  At first I thought my seizures would go away.  I had been “normal” up until then, and with that sense of normalcy came the assumption that I would return to that way of being.  Long term illness disability happened to other people…people to be pitied.  That wasn’t me.  As first, when I started on medication, I assumed that would fix by condition, but it didn’t and on top of that, there were side effects.  When I was in my twenties and still having seizures, I discovered “alternative medicine”.  I was very drawn to the concept that if one followed a natural course of treatment, one could cure oneself of anything.  There were plenty of testimonies that claimed this to be true.  I had no doubt if I followed a natural pathway to health that my body would “balance out” in some sort of magical way and I’d be seizure free.  I plunged wholeheartedly in this direction and giving up my anti-convulsant medication, which I believed would damage my liver, I began to take homeopathic remedies.  Along with that I stopped eating junk food and ate whole organic foods as much as possible.

Yet still my seizures continued.  When homeopathy wasn’t the cure-all; I assumed it would be, I just figured another alternative to Western medicine would be the one for me.  It was a long grueling process of trial and error with numerous medications and remedies before I came to realize that I would perhaps never cure my seizures, but instead find a way to manage them and that in fact my condition was chronic.  And until I would admit that, I couldn’t acknowledge loss.

Perhaps your story is like mine.  Or perhaps you’ve had a car accident or have suddenly contracted a debilitating illness.  Whichever the case, your symptoms persist no matter what you do.  At some point you realize your life has taken an abrupt detour and may never get back on track.  Wherever we are in the process we realize our lives have been changed.  And with that change we experience loss.

Our loss comes in many forms.  The obvious one is the physical changes we experience:  we no longer function the way we did in the past.  Our bodies don’t move the way they used to, we experience pain, have nausea.  When our symptoms are severe enough, it affects us to our core:  what can we depend on now?  It is not unlike experiencing an earthquake:  the very ground under our feet is shaky when we’ve always relied on it to be solid and assumed it would remain so. 

But that’s not all.  We may lose our job and our financial security, which of course effects us also on a survival level.  We may have to go on disability, unemployment or workman’s comp.  Often getting the help we need financially takes time, is a source of great frustration and adds to the fear we are already feeling.  If we had health insurance through our job, we may lose it.  Medical bills pile up and we’re not sure how we are going to pay them.  Sometimes we feel ashamed of our loss of financial footing.  Along with the loss of job security can be a loss of identity.  If our job was meaningful and fulfilling, we not only question how we can support ourselves, but who are we without this job title?  We start to lose our place in the world, and we’re not sure where we belong.

We may have started on medications for our on-going symptoms, which may help, but have side effects.  Ironically, something we take in hopes of improving our condition, may in other ways hinder us.  Pain medications may leave us in a fog.  Other medications may keep us up at night or cause our joints to ache.  This too adds to our loss.  We weigh it out if it’s worth it to keep up with the medications, and the process can be agonizing.

Friendships may fall by the wayside.  As first when we became ill, we got a lot of sympathy.  But as the days, months and years go by, that sympathy may dissipate. Friends we had so much in common with before, now back off, not knowing how to relate to us now.  Our former co-workers who we had so much in common with before, begin to fade from our lives.  Someone we used to go to the gym with regularly may not know how to be with us.  After not being able to go to social gatherings because we don’t feel well, the invitations slowly don’t come anymore.  We may not be able to go, but we feel left out.  We sense people’s fears and even judgement, or it may come out more blatantly.  We feel their pity in the form of well-intentioned advice or awkwardness which may cause us to retreat and feel betrayed.  We’re not sure how to relate either.  Our feelings are hurt and yet me may feel too in need of companionship and too confused ourselves in this new emotional landscape we find ourselves in to know how to communicate our needs. 

It may be hard to determine at first that what we are experiencing is loss.  We tend to associate loss with the death of a loved one or a break up, but a decline in health, whether rapid or gradual is not as well recognized as such.  There is much written about the phases of grief that Elizabeth Kubler-Ross presented when she studied those facing terminal illness.  The same can be applied to people with chronic health issues—although with us we cycle through some of the stages time and time again, sometimes all during one day.

We begin with a kind of denial or shock, the feeling of disbelief that this is happening to us, that I spoke of earlier.  Then we experience a range of emotions:  anger, resentment, bitterness, at times, and certainly sadness and fear.  We become depressed and experience shame and despair sometimes.  We are affected physically—we may feel tired, worn down.  We may lose weight, we may gain weight.  A kind of raw vulnerability develops—small upsets can affect us deeply and we become too overwhelmed to perform even the simplest of chores:  dishes and laundry pile up.  We feel lonely and isolated.  All these (symptoms) can come under the heading of “loss”.

We may not recognize ourselves and at times seem to lose even our personality.  Feeling lousy most of the time, our patience wears thin, and we become disagreeable or argumentative when we used to be lively and playful.  We are changing in front of our own eyes and we don’t like what we see.  This of course has an effect on our relationships, for we no longer exhibit the type of behavior we once did that people expect from us.

We also grieve our potential—who we could have been if we had continued to be in good health:  we may have got that promotion, bought that house.  We may have traveled more, done more volunteer work.  We may have had children, moved to our dream location.  Or we may have just continued as we were, because what we had felt was more fulfilling than what we seem to have now.  It is an odd phenomenon, this grieving for a possible future and yet it is as real as grieving for what once was.  It is as if alongside our real life with all it’s limitations, there is another life that is active and full of endless possibilities.  It is this life that we grieve for.                 

Acknowledging our health may never be what it once was and the components of loss that come with it is crucial to our moving forward in our life.  Coming to terms with our quality of health takes courage and requires a sobering honesty with oneself.  On the other hand, it also brings a certain amount of relief.  We let up on ourselves and stop pretending we are able-bodied.  We stop pushing ourselves so hard to try to live up to the expectations we once had when we had a higher level of energy.  We can be honest about our limitations and therefore begin to reconstruct a life that better reflects who we are now.  If we need financial assistance, we do what we can to get it.  If the friends we had before we were ill don’t support us or understand us, we begin to set about finding ones that do. 

CONTEMPLATION ON LOSS

When we take time to explore our loss, we find there is a poignant tenderness to it.  It is a feeling so deep in us that it can feel almost private and we may feel an awkwardness in knowing how to express it.  By investigating our broken heart, a moment here, a moment there, we have to set aside our fear constructed armor.  When we are able to touch our grief with a kind of careful compassion as we might touch a beloved, we discover the sacred within.  From this sacred place, can we see that the loss we feel is something we all share as part of the human condition?  My loss may come from a different source than yours, but the feeling is the same.  Can we, even if for a moment, recognize this shared awareness and let it move us in such a way that we can go through life with a heightened sense of compassion?  When we see the face of loss on others, regardless of the reason, can we now draw from our connectedness rather than our (imagined) separateness and reach out to others any way we can?  When we are able to do so, this kind of heartfelt awareness gives us a greater sense of meaning and purpose in our life.

Gradually, over time, we may come to realize that this sacred place is a place we’ve been longing to connect with and is a deep well of compassion that is endless and infinite.  Can we see that our path of loss has brought us to That-Which-Is-Never-Lost?  We have put up walls continually against such tenderness thinking it’s best to protect ourselves from pain, but now we realize that that never served us well.  Now that we can dip into that sacred well of compassion, we see that therein lies a strength and knowingness that serves us far better than our wall ever did.