Look who came to see me yesterday!
As people dealing with the ongoing struggle with our bodies, hope is a quality that is sure to enter our life at one point or another. When we wake up to the too-familiar pain in our joints or the weakness in our heart, or whatever is still waiting for us, it is easy to touch or give into fear, despair or bitterness. Hope is a wish that arises from the heart and offers us a chance at something better and keeps us going. Hope reminds us we often do not know the outcome of our illness, that science and technology are always expanding, that there are so many alternatives out there still to try. Hope whispers to us of all sorts of possibilities, and that whisper propels us forward and encourages us to not give up.
That being said, my own relationship with hope is not always an easy one. There have been times when I’ve lost hope, when I’ve given up hope, when I’ve clung to it. There’ve been times when it seems to me that to have any kind of hope that my health would ever change for the better was a dangerous tactic to take, as it could become a set-up for disappointment and then a plunge into dark emotions.
It is a good idea to look at our own relationship with hope and ask ourselves a few questions: What are we hoping for, exactly? A cure? A healing? An improved condition? A full recovery? Should our hope be “realistic” – whatever that is? Should we let go of hope altogether, because it creates a striving in the heart that just perpetuates more suffering? Perhaps if we’re to hope for anything, we should hope for an open heart to our on-going experience… but if that’s all we hope for, does it shut us down to any physical change?
At the onset of our illness, before we understand that it is a chronic condition, most of us hope for a full recovery or cure. Let’s be honest. We want our bodies to function as well as they did before we got sick. We miss how active our lives were and we yearn to “get back into the game”. But, as time goes by and we try various treatments and practitioners, we start to see that maybe a cure isn’t in the cards for us. We begin to see that yearning for such a thing takes us out of our life and away from the possibility of experiencing any happiness with things as they are right here and now. As we listen to our body’s needs and stories with compassionate awareness, we realize what we’ve been longing for all along is a healing and that healing is a wholeness that includes everything we experience as a human being: our bodies, our stories about our bodies, our fears, desires, our ups and downs, etc. This kind of healing doesn’t mean our bodies will suddenly be cured. “Healing” and “curing” in this case, mean two different things.
It can take us a while before we come to this conclusion. We begin by exploring beneath the surface of hope where there is often fear, loss and sometimes, desperation lurking. Having the courage to meet these powerful emotions from the soft places in our heart, encourages us to cultivate a kind of hope that buoys us, rather than feeds our fears of never getting well. Through the lens of this sort of exploration, we move into the spaciousness that allows the ultimate hope, the ultimate healing: We come into alignment with our innermost essence, from which all possible outcomes are born. This kind of open hope moves us away from a fear-based one that clutches at one particular outcome. Sharon Salzberg, Buddhist teacher and author, calls this “fixated hope”. She writes: “Fixated hope”…. like hope itself, resembles faith in that both sparkle with a sense of possibility. But, fixated hope is conditional, circumscribing happiness to getting what we want… when our hope for relief from suffering is based only on getting what we want, in the precise way we want it, we bind hope to fear, rather than to faith.”
“Buddhism regards fixated hope and fear as two sides to the same coin. When we hope for a particular outcome to arise or a desire to be met, we invariably fear it won’t happen. Thus, we move from hope to fear to hope from fear in an endless loop.”
I understand that loop intimately. And I understand another kind of hope; one that takes us out of that loop and inspires us to move forward. Some years ago, I had to detox from an antidepressant I had been taking for sleep, because it no longer worked for me. The process had left me anxious and fragile and my sleep worse than ever. On top of that, I had lost hope and became despairing that anything could help me as I had tried so many different remedies and medications – some of which worked for a while and then at some point, my body would habituate to it and no longer be of any help. This kind of process was a long and difficult one – one I’ve repeated again and again – first lifting my hopes, just to have them dashed again. The fragile physical state I was in at this point, deeply affected my emotional and mental states, and not only that, the specialist I had been seeing inferred that he had run out of things to try with me. What was I to do? Seek out yet another doctor? Find a new practitioner? I felt completely overwhelmed and was in a state of great anguish. As I often do when in dire straits and can’t see my way out, I called on people from my support system. One night a good friend came over to help out and when I told her all of my fears (what if there was nothing out there for me and I’d have to live this way for the rest of my life), she gently reminded me none of us knew what was around the corner, that the future held all kinds of possibilities beyond our knowing at this time. I listened to her intently and later stood out on my deck and looked up at the dark and clouded sky. Just then, like a schmaltzy movie, the clouds parted and revealed this glowing golden moon that I hadn’t noticed before, because I had been too caught up in my own despair. In that moment, my energy shifted, and that despair left my body. And in its place, hope moved in. Soon after that, I went back to my original doctor who determined that the combination of medications I had been on might have caused a reaction in me that made my sleeping more difficult than usual.
I want to be clear here. I am not suggesting that just because I was able to shift my energy, I was able to find better solutions — there are too many variables to know why any outcome comes to pass (see my January 3, 2020 blog post Creating Your Own Reality). I am suggesting that by moving into an open hope that has no set outcome in mind, aligns us with that which will work best for us in whatever condition we find ourselves. It allows us the ability to receive a new answer, whether it be acceptance or a step in a direction we may not have considered (or noticed) before. By letting go of fear (not always an easy feat for us) we bring about a greater potential for change.
Another element we would do well to cultivate here is equanimity. Living with the ups and downs of difficult symptoms, it is easy to emotionally feel on a roller coaster as well. We’re ecstatic when our blood work comes back negative after a long struggle with cancer, only to be devastated when, six months later, those same test results come back positive. Cultivating a kind of hope that is centered in equanimity, gives us an emotional balance with which to deal with the volatility of our lives. A good example of this, is the story of the old farmer. One day his horse ran off. When his neighbors heard, they dropped by. “How awful!”, they said, hoping to comfort him. “Maybe”, was all the farmer answered. The next day, the horse came back with three wild horses in tow. This time, when the neighbors came by, they said, “What great luck!”. “Maybe”, said the farmer. The next afternoon, his son attempted to break in one of the new horses but was thrown off and broke his leg. The neighbors showed up. “I’m so sorry, what a terrible loss!”. “Maybe”, replied the old man. The following morning, two military men came by looking to draft young, able-bodied men into the Army. When they saw his son, they moved on to the next farm. The neighbors congratulated him on his good fortune. “Maybe”, said the farmer.
Maintaining a hope with this kind of equilibrium while we deal with all our physical discomforts may feel like an impossibility, but I find it a good model to look toward. After years of struggle with getting good sleep, I’ve noticed that when I stumble upon a new remedy, etc., that helps me get a decent night’s sleep, there is always something inside that asks “Will this last?”. It so far never has. I have learned to develop a “maybe” attitude. Maybe it’ll be this way for the rest of my life, but maybe it’ll be better at times, and maybe worse. Meanwhile, whatever happens, my mental and spiritual goal is to maintain an even-keeled attitude, understanding like the farmer, that all mind states pass, eventually.
You can also practice the quality of equanimity to help you along. Just as with loving kindness meditation, you can construct phrases to meditate on (see my April and May 2019 blog posts Introduction to Loving Kindness and Loving Kindness, Part II). Jack Kornfield, Buddhist teacher and author, offers these phrases:
“May I be balanced and at peace”. “May I learn to see the arising and passing of all nature with equanimity and balance”.
Of course, you can create your own phrases that better reflect your circumstances.
“May I meet the arising and passing of phenomena in my body with ease and balance”.
Just like with loving kindness meditation, the more you practice, the more the phrases become a part of you instead of just wishful thinking.
In the end, I have found hope to be an essential ingredient on the spiritual path of chronic illness. Hope has come to mean for me a way of holding space for all possible positive outcomes. I make sure I leave space for miracles.
On the one end of my personal spectrum of hope, I Ieave space for the possibility of deep sleep and no seizure activity, to enough sleep to keep me functioning well enough and little seizure activity. Failing that, I hope to have an attitude and a relationship towards my health that is kind, compassionate and equanimous. Hope then, is an antidote to despair, bitterness, and a closed and fearful heart.
“When my house burned down, I gained an unobstructed view of the moonlit sky.” ~ Zen Poet Mizuta Masahide
For more information:
Jack Kornfield (equanimity, loving kindness meditation) https://jackkornfield.com/meditation-equanimity/
Sharon Salzberg (fixated hope) Faith: Trusting Your Own Deepest Experience. Riverhead Books (2003)
While standing in line at Rite Aid, I look over at the magazines at the counter. On the cover of People Magazine is a picture of Mariah Carey, with a caption revealing she has bipolar disorder. When I reach the counter, I take a copy and set it down with my other items to buy: a notebook and my favorite pens.
The cashier ringing me up glances down at the cover.
“Mariah Carey’s bipolar?”, she scowls.
“Seems like everybody’s bipolar these days. I think it’s just an excuse. They want attention, or they’re just weak-minded. Sometimes you just got to buck up”.
I look at her tight mouth and flashing eyes and wonder about her life. Does she just “buck up” and push through? Is that how she handles the difficulties of her life?
I must have a shocked look on my face, or maybe my mouth is tightening, because when she looks at me again, she says, modifying her tone, “or maybe she is bipolar”.
“Maybe more people are coming out about it, are being braver”, I suggest.
And with that exchange, I leave.
The conversation bothers me. It’s attitudes like hers that keep brain disorders and mental illness in the closet. All chronically ill people have to push harder to go through life. Mentally ill people have the added difficulty of having a stigma attached, making it hard to feel okay about having an illness that affects the mind.
Why is it such a stigma? The brain is part of the body, not separate from it. So why do we get so judgmental or frightened about mental illness and not as much or at all about other illnesses? Unless someone is violent, it seems no point in being afraid or protecting ourselves. Are we all just frightened of losing control, ourselves? Aren’t we all trying to keep it together on some level, at least some of the time?
Strictly speaking, bipolar disorder is a mood disorder, not a mental illness. For that matter, so is an anxiety disorder. If I’m honest, I feel a sense of relief that I am not labeled “mentally ill”, because I don’t want to be lumped with “those people”. I’m not a psychiatrist, but it seems to me that there is some sort of spectrum. You have people like me on one end, and a paranoid schizophrenic on the other. Am I a better, more respectable, likeable, deserving person because I’m more functional in the world? No.
Personally, I’m happy Mariah Carey is on the cover of People, telling her story. Kanye West gives no apologies for his bipolar disorder. I’m happy Howie Mandell is honest about his plethora of anxieties, even making us laugh about them. When well-known people are outspoken about their mood disorders and mental illness, I think it encourages others to do the same. Maybe by doing so, the stigma of mental illness can slowly slough off because of their willingness and courage; to be vocal about it and be themselves.
We have a long way to go. There needs to be a lot more education about all kinds of brain disorders, until shame is ditched and replaced with compassionate understanding. Everyone can come out of the closet and not fear condemnation. We all deserve to be respected, accepted and treated well by our doctors, friends, and community. We are all part of a greater whole and deserve to be recognized as such. Otherwise, there will remain a fracture in our humanity and we will all suffer from it. And I don’t want that. Do you?
“We’re one but we’re not the same. We need to carry each other”. ~ Mary J. Blige