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
“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” – The Dalai Lama
The other day I wrote in my blog that I was happy. I had slept well enough for me, was able to spend quality time with 3 friends and I felt like a “normie”. But that kind of happiness, although welcome, is conditional: if I’m not anxious, overly sleep-deprived or seizury, I feel happy.
Recently, I had an exchange with an old friend via email. I had noticed before that he seemed quite cynical and I suggested a book he might want to read that I found uplifting. In the exchange, I told him I wanted him to be happy. He responded that “happiness is a strange thing” and went on to say that in many ways his life was blessed. But a few years ago, his son died in a tragic accident and there were times he felt devastated and had a hard time functioning. He said that next time we talked he would try to be more upbeat.
I had to think about what I wrote. How can we be happy when a loved one has died, especially tragically? How can we be happy when our lives are diminished, when our activities are limited, when we are in pain? Is happiness even a realistic goal? And is happiness only based on outside circumstances?
I instantly wrote back to my friend that I didn’t want him to be inauthentic. I didn’t want him to pretend to be “upbeat”. What I wanted, I realized, was for him to not get stuck in bitterness, which I feared was what was happening. I’m afraid of that in myself sometimes, or that I’ll fall into a pit of despair and not be able to come out of it.
I think a deeper, more intrinsic kind of happiness is based on kindness and compassion. Suffering and hardship will come to all of us some way or another. If we hold ourselves and each other with kindness and compassion, we tap into what could be called our true nature, and that is based on not only no conditions, but is comforting and always available.
And yet, I know how hard it is to deal with an on-going illness, and how it can lead to bitterness, depression, despair, and other difficult mind states that can overwhelm us. Therefore, to get in touch with our innermost self, we need to cultivate kindness, compassion. This takes practice, continual practice.
This, in my opinion, is what leads to true happiness. If we strive towards a happiness that is only based on outside circumstances, we are eventually going to be disappointed; for these circumstances are bound to change. But when we strive for happiness that is based on our own natural resources, we will be tap into something that can never be taken away from us.
What does it mean to be spiritual? I meditate, do yoga, read books on Buddhism and spirituality. I also watch TV, dance to loud rock and roll and occasionally read People Magazine. When I engage in these latter activities, does this mean I am not being spiritual?
One day I watch a DVD documentary about Thich Nhat Hanh, a well-known Vietnamese Zen monk. I am deeply moved and inspired by this wise and gentle soul. I feel this burning desire to be like him. I vow then and there to be more “spiritual”; perhaps meditate longer and more often, pray daily and more fervently.
But then the next few nights my sleep is more disturbed than usual, which triggers my seizure threshold, and my anxiety is heightened. From there, feelings of dread and despair threaten to take over. Instead of meditating, which I feel I should do, but requires focus and concentration I do not have, I binge watch “The Kardashians”. Where did my resolve go? I feel bad about myself. Maybe I don’t have what it takes to be a truly spiritual person.
And yet upon reflection, those times when I give in and watch TV, I realize that I’m doing what my mind and body need to do. As someone who is chronically ill, I spend a lot of my time, like it or not, inwardly focused, probably more than the average person. I suspect this is true for most people with chronic illness.
For me, this can lead to depressive and anxious states and sometimes, despair.
I do use meditation practice to investigate these difficult emotional states, but sometimes, I need a break! I need distraction and I can get that quite easily with TV.
Many spiritual teachers warn of being distracted through all kinds of activity as a way of separating oneself from what’s going on internally, but for me there is a danger in getting too caught up in difficult emotional states. And this can lead towards hopelessness and despondency.
By watching reality shows like “The Kardashians”, I get a lot of breathing room by entering someone else’s “reality”. It gives me space. It lightens my mood. There is so much drama and antics packed into one show that it takes up most of my awareness: Will Scott Disick stop drinking? Will Kourtney and Scott get back together? Why does Kim act so superior? Will Khloe be successful with her new fashion line? Will Kris stop meddling?
By immersing myself in such trivial things, I lighten up. I take myself and my life less seriously. I get my needed break.
So, can we meditate and watch TV and still be spiritual? Can Thich Nhat Hanh and the Kardashians be part of my spiritual path? My answer is yes.