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.
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
“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.
I am seriously envious. My sister just came back from China. She went to a huge Chinese wedding. She climbed a mountain that looks just like the pictures you see; swirling fog at the base of the mountain, steep inclines, wild orchids growing on the side of the cliff. She hiked the Great Wall. She ate exotic foods and met all kinds of people. My sister is 52 but has the energy of a 20-year-old. She lives in Massachusetts and in five days will fly out here to California for 5 days!
I’m bright green with envy. Glowing. You can see me from miles away. I want to travel too. And often. And go just about anywhere. She sounded upbeat and as full of enthusiasm as a puppy. I told her “I wish I had about 1/3 of your energy!”.
I grew up in a family where travel was our middle name. We lived in California 9 months out of the year and 3 months on the east coast. Before I had problems with seizures and severe sleep deprivation, we went to Europe: Denmark, France, Italy, Greece. I went to Jamaica with my parents and Trinidad and Tobago. Guatemala and Honduras. Traveling is in my blood. And now? Now I don’t drive outside of my hometown. If I go anywhere else, I have to have a caregiver take me, and then usually for a doctor’s appointment a half-hour away. I did manage a trip back east last year with two caregivers, but it was brutal getting there: I felt like I had to slay a few dragons to get there.
In my fantasies, I’d like to live back east part of the year. I’d like to travel to Asia – Bhutan maybe? Thailand, Nepal? I’d like to go to Africa, too, but I’m not sure which country. Europe: pick a country, any country. I’d like to go to Alaska and see the Denali National Park. I’d like to go to Nova Scotia – just ‘cause. Costa Rica for sure. Australia and The Great Barrier Reef. Tahiti. The Caribbean. I want to see the Taj Mahal. Machu Pichu. Findhorn. Stonehenge. Victoria Falls. I’d like to hike, swim, zipline, snorkel, scuba, snowboard, hang glide, surf and kite surf.
So… I’m just a tad envious.
Which brings me to the topic of complaining. As someone with chronic illness, I feel like I’m not supposed to complain too much. There are always others worse off than me. So, I should be grateful for what I can do. As a society we love the “super crip”- the differently abled people who not only never complain but are able to do extraordinary things. Someone without legs managing to run a marathon with prosthetics. Someone who is blind who climbed a mountain. Someone who has Crohn’s disease becomes a medical doctor. These are all commendable achievements to be sure, but what about the rest of us who don’t accomplish such feats?
Personally, I think for most of us, it’s a feat just to make it through the day. For someone who suffers from depression to get out of bed. Another to walk from the bedroom to the living room. To get through one more day of pain without thoughts of suicide. To be able to balance a check book, make a meal, sweep the floor. Hold down a job.
In the middle of writing this, I took a break and walked outside. It’s been raining lately, and everything is so green. There’s the dark green of the pine trees that line the driveway, the ends of which are lighter from new growth. Cattails below the house shimmer a soft green that sometimes darkens when clouds pass by. The tall grass in the meadow is a shiny lime green. Green is a beautiful color with so many shades.
So, are there various shades of human emotion: fear, irritation, rage, excitement, sadness, and yes, envy? It’s human to have and feel emotions. To get stuck in them and have them eat a hole in your stomach or heart is something we want to avoid.
When I came back from my short walk, I felt something inside shift. I sat down and listened to the rain that started falling – a beautiful sound. I glanced at my cats who were sleeping peacefully. And I sat with my envy, green and glowing. It’s a beautiful thing too! A human thing.
And so, when my sister comes to visit, I will hug her hard, and squeeze her hands, and ask her more details about her adventures and look at her pictures on her iPhone. And I will be happy for her. And I will be grateful I have a sister who I love and loves me back.
And I will probably bring with me a touch of green envy. Emerald? Perhaps ivy? I’ll decide then.