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.
All people I know who have chronic illness challenges struggle at some point or another emotionally. There are times when our emotional suffering can overtake our physical suffering. Fear can grab a hold of us and spiral out of control, turning into anxiety or panic attacks. Thoughts turn dark and the spiral becomes depression or despair.
We’ve already explored the difficulties one faces at the onset of our illness; loss and the fears that often go hand-in-hand with it (refer to my previous post of April 8, 2019 Excerpt from My “Book” “Introduction and Initiation to Loss”). But, there are other scenarios that can cause difficult emotional responses, making it hard to maintain our equilibrium. One might be that we’ll go through a period of time when our symptoms are minimal and we have more choices available to us, our life opens up again. We might start to make plans, we may think we can get our career back on track. We may even believe that we are restored to perfect health, never to deal with the illness again. Then gradually, or perhaps suddenly, something shifts again, and we take a turn for the worse. It’s easy to see that these sets of circumstances could trigger our old fears of isolation and dysfunction or launch us into depression.
But sometimes, even if we’re doing okay physically, intense, dark emotions seem to rise out of nowhere and we are carried away by despair, hopelessness or dread. What’s going on here and what can be done to ease our minds and hearts in all types of scenarios?
First of all, it’s important to understand that because of the intricate relationship among them, when the body is in a weakened state, so is the mind and therefore, the emotions, creating an atmosphere that most of us find very challenging. I notice this with able-bodied people as well and more clearly, when they get something like the flu. At first, they’re unperturbed, and take remedies or pills and rest, knowing it will pass. But then, as the days go by and they realize this particular strain of flu might go on for a few days, they become grumpy. But then, if the flu goes on for weeks and the symptoms are difficult; high fever or stomach cramps, accompanied by sore muscles, for example, their usual cheery and determined disposition changes. They become a little nervous: When’s this going to end? They exhibit insecurity and question their significant other: Do you still love me? As people dealing with chronic illness, our challenge is on-going, which includes our emotional and mental reactions to our ill health, as well.
Secondly, it’s important to understand that some of the emotional and mental challenges that arise for people with chronic illness can be symptoms of Post Traumatic Stress Disorder. This understanding took me years to realize. It wasn’t until I saw a tv program about a Vietnam vet with PTSD, that I recognized myself – a lot of his symptoms were similar to mine: insomnia (although I believe mine is partially due to my neurological makeup), hypervigilance (for me, during the night: what if I have a seizure?) and occasional panic attacks (heart pounding, stomach in knots, persistent anxious thoughts). To come to the understanding that I have PTSD, was an enormous revelation for me and extremely validating.
In the past, when I exhibited these symptoms, I felt a certain shame with it: Why am I so weak-minded? Why can’t I sleep like everyone else? Why am I so fearful? Now I had a name and a reason for these particular reactions, which made me feel better about myself and therefore, more compassionate. I understood that for me, having grand mal seizures are traumatic, and that even though it’s been 20 years since I last had one, the fear of grand mal seizures is still great.
Because of this understanding, I could become kinder to myself and admit, with less shame (I’m still a work in progress), that I needed help. So, I hired caregivers. This way, at night, for example, when my anxiety becomes too much for me, when depression enters the room once again, I don’t feel like I have to “power through” – I can get up, wake up my caregiver and we can talk, have a cup of tea, and I can calm down more, and maybe even laugh!
sleep disturbances, hypervigilance, difficulty at work, impulsive destructive behavior, problems with concentration, strained relationships, changes in personality, loss of identity and sense of purpose
Physical symptoms of PTSD
headaches, colitis, and respiratory issues, ulcers
Of course, some of these things could be attributed to other causes, as well. It’s probably best to talk with a practitioner who is familiar with PTSD in people who are chronically ill, but if you have some of these symptoms and something resonates in you that their cause is PTSD, then I’d say chances are you are right.
As people living with chronic illness, we can feel we no longer trust our bodies, that they aren’t safe or reliable. This feeling affects the very core of our being. We feel unprotected. We live with the fear of a recurrence of our worst symptoms. We sometimes feel unsupported and misunderstood by our friends, family and doctors who think it’s all in our head, or that we aren’t trying enough to get well. This can further compound our doubts, fears and shame about our innermost selves and cause further isolation from community and society at large. Our financial position may change drastically, which affects us on a core survival level: How will we pay for any medical help? All this can be very traumatic and shouldn’t be minimized.
A direct quote from Counseling and Psychotherapy reads:
“A recent study showed that people whose worst event was a life event such as chronic illness, had more PTSD symptoms on average, than people whose worst life event was typically traumatic, such as an accident or disaster”. I feel the truth of this statement in my bones and I believe the reason for this truth is that our trauma is on-going, not a one-time occurrence.
According to studies, treatment for PTSD is multi-faceted, using a combination of education, medication, and therapies to address the effects. This is certainly true for me. In order for me to have any hope of even a fair night’s sleep, with my psychological and neurological makeup, I need a combination of hypnosis techniques, emotional support, medication and remedies. If you think you suffer from PTSD, it’s probably best to tell your practitioners (ones that understand this phenomenon) to get the help you need. It may take experimentation to figure out what works best for you, and what might make the best combination of therapies, support, medication and/or remedies. Understand that you may not ever “get over” the feeling of being traumatized but can look towards improving the quality of your life.
To give you a taste of where I hope to continue with this topic, here’s a wonderful poem by Naomi Shihab Nye and a quote by Pema Chodron, which, with a little tweaking, can fit your own life. And then I add something of my own along those lines.
Before you know what kindness really is you must lose things, feel the future dissolve in a moment like salt in a weakened broth. What you held in your hand, what you counted and carefully saved, all this must go so you know how desolate the landscape can be between the regions of kindness. How you ride and ride thinking the bus will never stop, the passengers eating maize and chicken will stare out the window forever.
Before you learn the tender gravity of kindness, you must travel where the Indian in a white poncho lies dead by the side of the road. You must see how this could be you, how he too was someone who journeyed through the night with plans and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside, you must know sorrow as the other deepest thing. You must wake up with sorrow. You must speak to it till your voice catches the thread of all sorrows and you see the size of the cloth.
Then it is only kindness that makes sense anymore, only kindness that ties your shoes and sends you out into the day to mail letters and purchase bread, only kindness that raises its head from the crowd of the world to say it is I you have been looking for, and then goes with you every where like a shadow or a friend.
Too often a side effect to chronic illness is the harsh way we treat ourselves. When we feel poorly, we often think and act poorly. On top of the difficulties we experience, we may feel we are somehow responsible for our illness or feel inept at coping with it. We think perhaps if we were someone else, we would be handling it better. We hear of spiritual masters who can transcend pain, why can’t we? Why do we still need medication? Why can’t we get a job done on time? Why can’t we do the simple task of washing dishes without it overwhelming us? On top of all that, we unconsciously send hateful thoughts to our afflicted body parts: “why won’t you just work?”
We may feel justified with these insidious self-accusations, or secretly believe we deserve the suffering we are enduring. We may wonder if maybe we did something in a past life that we are making up for now in the form of illness. Maybe we did something (or think we did) in this life that we feel is resulting in our present condition. We may even be doing something we know is contributing to our overall lack of health, like eating junk food, or smoking cigarettes.
The simple fact is even if some of these things have any credence, it never makes us feel any better to harangue ourselves. No one’s condition ever improved and no one has ever cured themselves from an illness by critical self-talk. Ask yourself this: would you ever treat a loved one as harshly as you treat yourself?
The following is an excerpt from my book about how we are unkind to ourselves when we have chronic illness. At some point, I hope to expand on this, including suggestions that have helped me, and continue to do so.