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