I am all over the place lately, leaping from fear to peace. I am reflecting what is happening all over the globe: Chaos and fear, yet a slowing down of activities. Sometimes I obsess about all kinds of things: Will I get this illness? Will I die a horrible death? Do I have enough tp? What if one of my caregivers gets sick and spreads the virus to others? What if I am left with no caregivers? How do I clean properly? Did I wipe down the doorknobs after someone left? What if I forgot? Anxiety loves this kind of stuff. It thrives on it.
And then, suddenly I am peaceful and feel wide open and content. Calm. And more connected to nature. The trees around my house seem more vibrant than ever. I watch the ducks in the pond happily waddling about, and I breathe more deeply. The red-winged blackbirds sing their delight at being alive and dive in and out of the cattails. Sometimes I go outside and sit on the earth and cry. I don’t know what I’m crying about, but tears run down my face. I sob. It feels good to do so. And I feel supported by the earth when I do.
Yesterday, while I was out there, Simon, our cat, came and sat with me and then curled up in my lap. We both surveyed the pond, the meadow, the hills. And I thought: If all humankind died, the earth would heal and that thought gave me peace. I love my friends, family and community, and sometimes am able to love all humankind, but, as my mother used to say, “We are the most destructive species on the planet.” She was right and it’s a hard fact to sit with.
Sometimes, I open my heart to not knowing. Not knowing if certain people I know and love will survive. Not knowing if local businesses will survive. Not knowing how long the virus will survive. And these thoughts take me to the big “I Don’t Know” – the mysteries of The Universe. And this thought leads to Freedom.
“Remind yourself that it’s up to you whether you actually experience gratitude and the preciousness of your life. The fleetingness and the rareness of it, or whether you become more resentful, and harsh and embittered and feel more and more cheated. It’s up to you how the law of karma all works out.” ~ Pema Chodron
It is not easy to feel thankful when we are chronically ill; in fact, sometimes we feel cheated out of life when we have yet another bout of pain, or have to go through the red tape required to get the financial assistance we may need, or start on yet another medication with possible side effects. We may find ourselves comparing our capabilities to others’ and coming up short. We are affected by a society which tells us acquiring more possessions will make us happy, along with a flurry of activities, a driving ambition, and worldly achievements. The inner spiritual life is not spoken of; seemingly left to hermits, gurus, and other spiritual masters we have heard about. Keeping this in mind, it’s not surprising that we find ourselves complaining and wanting our lives to be different than what they are.
Therefore, in order to manifest gratitude, we must cultivate it by practicing it regularly. Like any other discipline, be it exercise or meditation, in order to get the best results, just by doing it once in a while, isn’t going to get it. With regular gratitude practice, we develop a greater appreciation for our lives, despite the struggle in them.
There are several ways I know to practice gratitude. The following is a short, yet powerful practice:
Before settling in for the night, think of three things you are grateful for. I found that no matter how hard it has been for me that day, I could always come up with three things. They can be as basic but as needed as the breath that moves through your body, or the roof over your head. This practice can wake you up to what you do have and what is working in your life.
Another practice I recommend to activate gratitude, is to make a list of things you are grateful for. Perhaps you could put this list on your fridge or your mirror – some place where you are most apt to see it, in order to remind yourself. Some items on my list are my partner of 25 years, my caregivers, and that I live in the country. When you really begin to think about it, a lot comes to mind. It can shake us up doing this practice, because it puts us in touch with all the little things we take for granted.
Another practice is to start a gratitude journal. Recently, for a week, I did just that. Before, I made lists, but I thought I’d take it a step further and see what would happen with journaling. I wasn’t sure it would bring me anything different. But it did. It allowed me to go deeper into the feeling of gratitude by going into the fine details instead of skimming the surface.
Instead of just saying “I am grateful for the rain”, I wrote: “This morning I am grateful for the rain, the way it soothes the ground, saturating it, smells of the earth rising up, greeting it, embracing it. The sound of it surging out of gutters.
I am grateful for the nor’easters I experienced when young, the way the clouds would gather and grow dark, grow purple and move across the Vineyard Sound, changing the color of the water rapidly, as white caps raced to the shore.
Then the clouds would move towards our house, lightning zig-zagging, thunder roaring, electricity in the air popping and fizzling, the surrounding leaves from tree branches turning inside out.
Then the rain would pound our roof, which seemed barely to protect us, our home uninsulated, magnifying the sound. Nature stopping us in our tracks, taking over, silencing us with its power”.
I am grateful for the rain.
We can come to gratitude in other ways, as well. Ironically, living with chronic illness can lead us to appreciate the ways our bodies are working well. For example, one day after picking some berries, I noticed a small thorn had embedded itself in my finger. It began to become sore and inflamed. I started to wonder if it was infected and considered making an appointment to see a doctor. But then, after a few days, it began to heal, and the redness and soreness subsided. I felt grateful to my body that in this small way, it was working well and taking care of itself; something I would’ve easily taken for granted if I was able-bodied.
Small occurrences like the above take place in our bodies daily, without our recognition of them and stopping in wonder. By practicing gratitude, we begin to see all kinds of things in our life that we can give thanks to: The caring attitude of a pharmacist, the trees growing in our backyard, the shoes on our feet.
Feeling grateful allows us to feel complete and satisfied. We are no longer searching for something or someone to fulfill our ongoing needs, but feel the grace that comes from the acknowledgement of our appreciation. We feel restored and even empowered by the inward calm that is a by-product of this practice. Giving thanks is a way of blessing our own lives.
Gratitude and generosity go hand-in-hand. As we begin to experience abundance we attain from gratitude, it feels natural to give back. On our gratitude list is surely our support system. Can we do something special for them? Perhaps we can’t afford a gift, but can we craft them a poem, create a collage? Sharing our sincere words of thanks can allow them to feel acknowledged and appreciated, and may be the biggest gift of all. Another unusual way we have to give to people that help us out that we may not notice at first, is to allow others to give. Many is the time I’ve had to ask for help when feeling seizury or recovering from a seizure. It has always been difficult to do when expressing that to my caregivers. I’ve often been told that it made them feel good to give in this way and they ended up enjoying the quiet and reflective time that came from it.
Also, with all that we know in coping with our illness, can we share our insights and knowledge gained by experience to others who are in a similar place? A kind word here, a thoughtful suggestion there? We can share our stories with others who are new to chronic illness, which can lead them to feel understood and lessen their loneliness?
We can also, of course, listen to their stories. Simply bearing witness with an open heart can allow others to feel heard, which can lighten their load. I once spoke with a woman surviving breast cancer, who had been through tremendous hardship. I asked her how she was doing, and she told me in great detail what her experience had been with surgery, chemotherapy and other medications and the side effects she had to endure. Her story was difficult to listen to and yet, having practiced sitting with my own difficult and weighty emotions made it easier not to run from hers.
Another way to help is to call others we know who are struggling with difficult symptoms and check in with them when we are feeling a bit better. We know from experience how uplifting that can be for us during more acute times of our illness, so if we have a little energy one day, this is certainly something we can do to contribute to others’ well-being.
Giving back in these simple yet profound ways gives us the opportunity to see we have something to offer our community, which increases our self-esteem, gladdens our heart and adds to our sense of purpose in the world.
This morning I go to my friend Rainbow’s house to pick up a CD she has made with her “old man” Donovan. Rainbow is an old hippie who has basically tie-dyed her hair purple and green recently. We get to talking about all sorts of things and then she says, “We’re both the sensitive type. And sometimes that’s hard when life gets really dark.”
I nod my head agreeing, and give her arm a squeeze, wondering what she’s been going through lately.
“But I think that sensitivity is also a gift,” she adds. Yeah, I think. I forget this, but it’s true. “We feel things so deeply, don’t you think? And others! Real empaths.” I nod again. “Sometimes I feel I don’t have any skin.” “Yes, yes!,” she says enthusiastically. She can become easily excited. “That’s it exactly! But that sensitivity gives you the ability to write poetry. And the free hugs you used to give at Mariposa.”
I consider this. “I guess you’re right. That sensitivity we share has a positive side, although when things become really difficult, I forget that.” “I know! I know!” She’s almost jumping up and down. “Me too! But we can’t forget the flip side! Energy is energy! Sometimes we name it “anxiety,” other times we can name it – oh I don’t know – “The buzz of creativity.” We can’t forget that buzz! It’s magic!” Rainbow has a unique way of putting things. “Like you and your music and your big heart,” I say.
She ducks her head momentarily embarrassed, then says, “When we feel other folks’ pain, that can be draining sometimes. But it also means we can offer folks a lot of love.
“You’re right,” I say. I’m glad to hear these words from her right now. Lately, I have only seen the downside of sensitivity: The inability to use computers for too long because how it affects my nervous system, how I get almost every flu and cold in the winter because of a compromised immune system from too little sleep over too many years, and anxiety that shows up too frequently as far as I’m concerned. Not to mention epilepsy.
“Plus,” she goes on, “It seems like other folks don’t experience deeply the sweetness of the world. Like dew: It’s fantastic how it sparkles! Or how the sun can pierce through the dark clouds and right into your heart. They see it, they feel something, but it’s not a Big Event, you know? They’re on to the next thing.”
“I get what you mean. I often wonder what it’s like to be other people. To feel not what they feel, but how. Often, they seem to me – oh, I don’t know – not hardened exactly – but… more protected somehow. Some people hardly ever cry.”
“I know,” Rainbow says, “Can you imagine?” Her eyes widen in wonder.
I think about my mother whom I could count on one hand the number of times I saw her cry. And I never saw her sob. I remember her saying once, “Why do people have to talk about their feelings all the time?” She wasn’t a cold person. Warmth emanated from her. She just had thick skin – she was born that way.
We go on to other things: her upcoming gig, what movies we’ve seen lately, our very different upbringings: hers Catholic and strict, mine, unorthodox with few boundaries.
I then tell her I need to get back home and we hug and say goodbye.
When I reach my car, she yells, “I love you!”
I blow her a kiss.
“Keep writing poetry,” she adds as I’m about to open the car door, “The universe needs us!”
I toss the CD into the car and turn towards her, fashioning my hands into the shape of a heart.
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
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.
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.
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.
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 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.
They reveal the patience Jesse has, 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.
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.
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.
“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.”
… “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.”
“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.”
“All of my teachers have had a great sense of humor and have valued humor as an important part of the spiritual path. It is a key part of being friendly to ourselves. Many of us go through our days haunted by imperfection. We think there is something fundamentally wrong with us… when we laugh at ourselves… all our terrible flaws become less solid and serious.” ~ Pema Chodron
The other day, I went to a book sale at my local library and picked up the newest David Sedaris’ Calypso. I bought it, figuring I would like it since I enjoyed his others. Plus, I had been depressed lately and thought this could be just the thing to lift my spirits, as I have found his books to be funny. And by funny I mean hilarious.
And by hilarious I mean hysterical!
This book was no exception. I laughed out loud often, then afterwards realized I couldn’t remember the last time I laughed like that. That got me thinking about humor and its role in our lives. Living with chronic illness can make us feel sad, lonely, and depressed, and oftentimes, humor gets kicked to the side of the road without our realizing it. It seems to me that humor is an important human trait, perhaps as necessary to our health as the remedies we may take to make us feel better.
Have you ever seen pictures or videos of the Dalai Lama or met a Tibetan lama? You’ll notice that often they are smiling, and their eyes are twinkling. They seem to have an inside joke that the rest of us don’t know about, which leads me to think that humor is a natural, intrinsic part of our very being. When we lose our sense of humor, we are losing something essential; something we actually need in order to experience the wholeness of our being. So, how do we bring back our sense of humor? How do we cultivate it? How do we encourage it? Can we even include humor and lightness into our spiritual practice? Fun, even?
Everyone has their own sense of humor and every culture has their own sense of humor. What I find funny may leave you dry and vice versa.
I once had a friend over who is from Scotland. She brought with her a Monty Python movie, which we popped into the DVD player. While watching it, she laughed uproariously, in a way I’d never seen before. And although I found the movie somewhat amusing, it was not my thing. I got more amusement out of watching her.
Another time, I went to an international deaf conference. At one point, I decided to go to a large gathering where people would get on stage and share jokes. Although I am not fluent in American Sign Language (ASL), I knew enough that I understood the jokes, but didn’t find them particularly funny, but all, and I mean all of the deaf folks there could barely keep it together.
One thing that always works for me is to watch comedies. As I said, I know we all have different senses of humor, but just in case our tastes are similar and you could use a laugh, here’s a list of movies and actors that might work for you:
– I love Robin Williams. Two of my favorites are The Birdcage and Nine Months.
– All Marx Brothers movies
– Meet the Parents and Meet the Fockers
– Whoopi Goldberg in Sister Act and Sister Act 2: Back in the Habit
– Steve Martin
– Chris Rock – especially his stand-up
– Larry David (if you’re looking for politically incorrect humor)
– Lily Tomlin
– Hugh Grant (if you’re looking for dry humor)
– Margaret Cho, stand-up routines (if you’re looking for irreverent humor)
And I don’t particularly like her movies, but I love Ellen DeGeneres. She’s a goofball.
Of course, there’s always YouTube: Giggling babies
I don’t know about you, but there have been times when I have become too solemn in my spiritual practices. When meditating, for example, I have sometimes gotten too rigid in my approach, chastising myself when my mind wanders a lot during a session. Or, once, I took up a practice that required chanting a mantra for 103 times, and I found myself obsessing about whether I did it 108 times, or 107, or maybe even less. Maybe it’s just my Virgo personality, but I think there can be a tendency to get too strict and heavy about these things. Spiritual practices after all, are supposed to bring us to an open and warm-hearted place, not a demanding and austere one.
The following is a story my teacher told me that speaks to this:
There was once a very dedicated spiritual practitioner. However, try as she may, the enlightenment she sought seemed to escape her. She meditated diligently, and yet felt little or no reward. She decided she needed a new spiritual teacher and through word-of-mouth, set an appointment with one that came highly recommended.
“Oh venerated teacher”, she said, bowing before the master, “I follow the teachings religiously, and yet, I can’t seem to make any progress. Can you help me?”
The teacher looked at her for a while, pondering, then smiled. “I know just the practice”, he said.
“Yes?”, said the student, eagerly awaiting his wise counsel. “What is it?”
“For the next week, I want you to chant all day, using the mantra “Sensa”, then come back to me.”
After repeating the word several times to make sure she had it right, she said, “Thank you, thank you”, and made sure she bowed again. She rushed back to the meditation room and immediately began chanting.
The following week she returned, looking dejected. “Well”?, said the teacher, “What happened?”
The student hung her head. “I did as you instructed, venerated teacher, but nothing happened.”
“Hmmm…” thought the teacher. Then he smiled. “This week, I want you to say the mantra “huma”, then report back to me.”
The student was happy to receive new guidance, and felt sure that this time she would succeed.
But, one week later she returned feeling yet again dejected.
“Teacher”, she said, “I did what you instructed and yet I still didn’t make any progress. Isn’t there anything you can do to help me?”
The teacher’s eyes sparkled. “This week I want you to put the two together, saying the first mantra and then the second mantra right after it.”
The student nodded, happy there was still something she could do. She bowed deeply and left the room eager to start the next practice. She sat on her cushion, positioned herself correctly and began anew.
“Sen- sa hu-ma. Sen- sa hu-ma. Sense a huma. Sense a Humah.” Then, suddenly she got it. “Sense of humor!” The old teacher had been playing with her all along! Didn’t he know she was serious about her practice? All this time wasted! A fury rose up inside her. She picked up her few belongings and stormed out of the monastery.
For several weeks afterward she was still angry. Then, little by little, she went over the scenario in her mind and her perspective began to change. After a while she began to chuckle, thinking of what the teacher had done and then came to understand that he was a great teacher, after all, and had passed down some great wisdom, allowing a lightness in her practice she’d never been able to have before.
For those of you who want to add some fun to your spiritual practice, Dr. Madan Kataria, from India, developed a type of yoga called “Laughter yoga.” By including breath exercises, chanting “ho, ho, ha, ha”, playing silly exercises, participants begin to laugh, releasing built-up tensions.
Besides feeling lighter afterwards, Kataria says that laughter boosts the immune system and fights depression. It can also reduce high blood pressure and is a good workout for the muscles, improves circulation, and increases the production of endorphins.
Finding out about this type of yoga reminded me of a children’s game I used to play. Although I haven’t played it since I was a kid, I’m sure I would get just as much pleasure from it now as I did then. Perhaps you’ve played it too. Gather some friends and lie in a circle, each person placing their head on the belly of the person next to them. One person starts out by saying “ha”. The next person says, “ha, ha”, and so on, each person adding an extra “ha” to the last one. Pretty soon, of course, everyone is laughing hysterically until your belly hurts and you think you might pee your pants.
“Being able to laugh at ourselves connects us with our humanness. This in turn helps us connect to and have empathy with other people. We realize how all of us are fundamentally equal.” ~ Pema Chodron
I must admit that because I have epilepsy, my favorite jokes are epileptic ones. Some might consider this type of joke politically incorrect and therefore off limits, but for me, it gives me a chance to make light of my condition that I can take all too seriously.
Did you hear about the guy that got trampled to death at Disneyland? He had an epileptic fit, and everyone jumped on him because they thought it was a new ride.
What do you call an epileptic on a bed of lettuce? A seizure salad.
What’s blue and doesn’t fit? A dead epileptic.
That last riddle is my favorite. Maybe my humor is a bit twisted at times, but I also think what this does for me is to exorcise my fear and release the power that fear can have over me at times.
Here’s another example of someone laughing at themselves, in particular, their disability. This guy cracks me up.
The other day, I was hanging out with Cari (my partner who also lives with chronic illness). I don’t know what got into us, but we started singing “The Star Spangled Banner”, as loudly as we could and completely off-key. We sounded like donkeys who had a little too much to drink. And then we laughed so hard, tears ran down our cheeks. Her face, usually drawn from pain, brightened and she grinned from ear-to-ear. I realized I hadn’t seen her smile in ages.
Every once in a while, when our lives feel too difficult, I’ll grab this juggler hat I have and walk into her room. It never fails to get a chuckle from her.
So, what makes you laugh? How can you lighten your day?
BBC. (1969-1974) Monty Python [television show]. Westminster, London, England: The British Broadcasting Corporation.
Barnathan, M. (Producer), & Columbus, C. (Director). (1995). Nine months [Motion Picture]. United States: Twentieth Century Fox.
Chodron, P. “All of my teachers have had a great sense of humor…” Quote. “Being able to laugh at ourselves connects us with our humanness…” Quote.
Hafiz (14th cent.). Landinsky, D. (2006). I heard God laughing: Poems of hope and joy: Renderings of Hafiz (Landinsky, D., Trans.). Walnut Creek, CA: Penguin.
Harris, B. “Two Nuns Laughing”. Photograph.
De Niro, R. (Producer), & Roach, J. (Director). (2004). Meet the Fockers [Motion Picture]. United States: Universal Pictures.
De Niro, R. (Producer), & Roach, J. (Director). (2000). Meet the parents [Motion Picture]. United States: Universal Pictures
Gilmore, A. (Producer), & Ardolino, E. (Director). (1992). Sister act [Motion Picture]. United States: Touchstone Pictures.
“The artist is a receptacle for emotions that come from all over the place: from the sky, from the earth, from a scrap of paper, from a passing shape, from a spider’s web.” ~ Pablo Picasso
The following is another excerpt from my unfinished book.
Years ago, during a meditation session, I realized we are beings that are constantly creating, if only in our thoughts. I also realized that when we are in the act of creating something, we are connecting with Creation itself. A special relationship is forged as we link up with that essence, and we feel energized, plugged-in, an open channel. Any act of creation begins with that connection and ends with an outer expression of that connection. This process is healing as we feel those creative juices flow through us and we find yet another way to connect with our innermost self.
Finding a creative outlet can be very useful for those of us with chronic health challenges. Instead of vegging-out in front of the TV, getting lost in cyberspace for hours, or spiraling into depression or anxiety, we can focus our energy toward something that really nourishes our spirit. When we are being creative, we can shift our mood and
redirect that energy, transforming the chaos of fear or despair into the exciting chaos of creativity and by doing so, free up any numb, stuck places. It gives us a constructive outlet for all that we experience.
Being creative doesn’t require a certain level of expertise. Anyone can pick up a pen or a paintbrush. What is required, is a desire to play, to experiment, to explore, and to listen to what wants to be expressed. It also doesn’t mean you have to end up with a polished finished product. The outcome is often beside the point. Being creative can be as simple as playing your favorite music while dancing in your kitchen, or doodling on a piece of paper while you wait in a doctor’s office. It doesn’t mean you have to write a novel or to be published to write, or paint a landscape and have an art show to dabble in watercolors, which is really good news for those of us with limited energy. What’s important is to be engaged in the process and to allow the creative force to move through you with as little constraint as possible.
Most of us, at one time or another, experience blocks in our creativity. I think a large percentage of the time the reason for this is the critical voices in our head: “I’m too old for this”, “I’ve never taken a class”, “this is stupid”, or “Debra is really good at this – I’ll never be as good as her”.
During meditation, when critical voices arise, I try to recognize their tones for what they are, and to the best of my ability, take note of them and continue meditating. They can be handled the same way in regard to creativity. When the critic starts in, we can just say hello and continue what we’re doing. If it persists, we can set aside what we’re doing and take out a journal and let the voices have their say. We can write it all out as if they were talking and write until we can’t write any more. We may uncover something useful: We may recognize the voice of our mother, or our second grade teacher. Then, when we’re through, we can go back to writing that poem, creating that dance, painting that picture.
Another way of freeing up blocks is to try a different outlet for a bit. If we’re blocked with the still-life we’re painting, we can try our hand at a clay sculpture, or pick up the kazoo. There is something about trying out a different venue that can free up stuckness in another. It may be just that by taking a break from your particular creative endeavor and putting your attention elsewhere that makes a difference, or just allowing space for the flow of creativity, but I’ve seen this happen many times within myself.
Tapping into the creative can be a powerful and intense process that can have the side effect of bringing about a healing catharsis. I have a friend who began to have memories of early childhood sexual abuse. She started to make abstract pictures – nonverbal expressions of what she went through so long ago. She had never tried her hand at art before, but suddenly felt a compelling need to do so. During the process, she became possessed – spending hours working on them, for weeks. Afterwards, she had a series of probably ten pictures, which she shared with friends. The pictures were haunting and disturbing, especially the first ones, and then they became lighter and more hopeful, reflecting her inner process.
Another friend of mine had a car accident and suffered head trauma. She ultimately had to leave her job, because of her incapacitating symptoms. The accident changed her life completely and she was obviously distraught. She, too, began to make abstract pictures with an urgent need to express herself. Making these pictures became her main focus, churning out several pictures daily.
Creating an expression of your particular health challenge may be something you want to do.
Also, finding an outlet that is non-verbal can reach into the deepest parts of ourselves that are beyond words, and
can satisfya profound need in us.
One particular hard time in my life, I was experiencing partial seizures regularly. Because of cognitive problems, describing in words how my body felt was too difficult for me, so I drew a picture instead that was
much more expressive of my inner experience. Everyone I showed it to, had a visceral reaction to it that gave me a sense that they understood how it must feel to be me, leaving me feeling more connected with them and less isolated, altogether.
When I’m not feeling well, but want to dabble in something new and different, I can easily become overwhelmed and can’t think of what I’d like to do. When that’s the case, I choose from a list of things I made up when I was feeling better. You might want to do the same for yourself. The following is a list you might want to consider, made up of activities that range in energy level.
Try this: Take a small jar and fill it with some dried beans. Put on your favorite music and shake your new, instant percussion instrument.
Try this: Take out a pad of paper and pick a topic, any topic, and for the next ten minutes, write without stopping and no crossing out. Just let your mind take off. This technique was developed by Natalie Goldberg, who has written many books on writing as a spiritual practice (1986). To stimulate your creativity, I highly recommend Julia Cameron’s books.
Try this: Make a collage. Your library or your doctor’s office may have old magazines that they’ll let you have. Bring the magazines home and cut out images and/or phrases that appeal or inspire you. Have fun with it. You may want to have a theme in mind when you do it, or just want to create something of beauty you can look at later.
Try this: Buy a cardstock and envelopes at a craft store. Use some of the images you cut out for collages and in no time flat, you have pretty cards for various occasions.
Try this: Make a model from a store-bought kit.
Try this: Buy adult coloring books at your local bookstore. Instead of using crayons to color with, buy a small set of watercolors, instead.
Try this: Buy a set of colored pencils and a pad. Put on your favorite music and let yourself go.
Try this: Go to the library, to the arts and crafts section and peruse. If something catches your eye, check it out.
Try this: Make a list of all the creative hobbies you’ve always wanted to do. Remember how you’ve always wanted to knit a sweater? Now’s the time.
Try this: Go for a walk. Collect pine cones, sticks, shells, a feather. Buy an embroidery hoop at a craft store. Make a mobile.
Consider this: Creativity with others.
The other day, when feeling too ill to write, I took out my colored pencils and pad of pages, and my caregiver and I made some drawings. I decided my cats were the perfect inspiration.
Try this: Using watercolors, colored pencils, pastels or??? and a big pad of paper, create an abstract picture of your symptoms. Don’t overthink this … just grab colors that speak to you, and go. Because symptoms fluctuate, you may want to do a series of pictures. What was it like to do this? How do you feel afterwards?
“The idea is like a blueprint; it creates an image of the form, which then magnetizes and guides the physical energy to flow into that form and eventually manifests it on the physical plane”. ~ Shakti Gawain
“In a general sense, all artists are shamans, insomuch as they are channeling images or concepts on behalf of the collective”. ~ Vicki Noble