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.
I am a man and I am with a few other men. We are all wearing coarse, long, brown tunics. We are in a desert-like place and there is very little vegetation. We are running away from somebody or something and are all very frightened. We want to find a place to hide, but there is nowhere to do so. I feel a strong sense of doom. Other men come upon us; they seem to come out of nowhere. There are many more of them than us. I know we are done-for. The next thing I remember is sharp, stabbing sensations through my wrists, like someone has driven something through them. The fear takes over and becomes pure, raw terror, then I feel myself spinning, spinning, spinning. I realize at some point that I am dead, which frightens me even more, if possible. I keep spinning in fear for what seems like forever. I then slowly think of how I can stop feeling so frightened. I remember love. I try to conjure up the feeling of love, which is hard to do in my state of mind, so what I do manage to summon is off the mark; a kind of caricature of love.
Then some time elapsed, because the next thing I remember is that I am in a new body; once again, a man. I am young, probably in my twenties. I am what could be called “The Village Idiot”: I have little intelligence, but am overly affectionate in inappropriate ways, like going up to strangers and hugging them.
I wake up. I have been in a deep sleep, which is highly unusual for me. I don’t think I’ve moved all night. I understand that what I just went through is not really a dream but two past life experiences. I have no doubt about that. In fact, I can’t even call it a memory, because what happened is I somehow entered those two time periods when I was in other bodies. I am also very clear that I have a seizure disorder, in part, because of the fear and terror I experienced from when I was killed and I understand that in this life, I have the opportunity to work through that fear. I also understand that the “Village Idiot” lifetime was a result of having conjured up a cartoonish feeling of love. All these realizations enter my mind at a rapid rate, and I am completely overwhelmed.
There was always a part of the first life that bothered me: How exactly did I die? What was that sensation in my wrists? What was going on? I have since learned that during the time of Jesus and other times throughout history, crucifixion was a common form of punishment and that stakes were put through the wrists, as well as the palms and feet. When I heard of this, I felt this is what happened to me. I was also quite sure that what had actually killed me wasn’t anything physical, but that I had died from sheer terror.
It is through this direct experience I had years ago, that I learned how it is that we can create our own reality. What is a “seizure disorder” and my tendency towards worry and anxiety during stressful situations in this lifetime can on one level be seen as the embodiment of terror that spun me out of my body so long ago. I also understand that instead of thinking that I am being punished for “bad karma” from a past life, I see it as an opportunity to work through that fear and come into the full power of my being. That experience was so powerful for me. I can never dismiss it as just a dream, but a way for me to directly experience different concepts: creating one’s own reality, karma and past lives. I am very grateful for these understandings.
However, the concept of creating our own reality is a very sensitive and complex subject; one that’s certainly worth exploring, but with care and compassion.
Recently, I’ve become aware of a resurgence of this belief; the premise of which is wherever we are in life, we’ve attracted our set of circumstances with our thoughts, whether conscious or unconscious. From this point of view, it therefore follows that we create any illness we have. If we want perfect health, they say “All we have to do” is to uncover our negative beliefs and replace them with positive ones, focusing on good health.
While I can see the truth to this, based on my own experience, I also believe the verdict is out on just how much we can create our own reality to our liking. While it’s true that there are people who have had miraculous recoveries from their illness, due to focusing on positive awareness, there are many who have not, and I don’t think it’s due to their not trying hard enough, as sometimes is implied. It’s also true that we only use a small portion of our brain, and who knows what would be possible if we used more or all of it? Investigating our belief systems and affirming a positive outcome for our health is always worthwhile, yet I think it’s important to be unattached to the outcome of our efforts and just when they might be manifested. I have seen psychological harm occur in myself and others when, after much effort, we still remain ill. We then start to question our abilities to heal ourselves, and fear, judgement and doubt sneak in: Just what dark secrets are still lurking in our psyche? Have I tried hard enough? Am I good enough? Am I being punished for a past life? IT is difficult enough to deal with our health challenges without producing new emotional ones on top of it.
When the idea that we create our own reality first started spreading in the alternative community, it was quick to catch on and in many ways, was very beneficial. It took the focus off of the idea that all illness resulted from external forces and a new examination began. How did beliefs and emotional mind states create disharmony in the body? The mind-body connection was explored and there was a lot to uncover. One of my problems with this concept is that it became over-simplified and took over all the other ideas instead of being one of many of the influences of the body’s breakdown.
And there are many others: The environment, an accident, genetics, diet, to name a few. One could argue that there have been recoveries of the body’s health whatever the initial cause, by using techniques of the mind, but there are many people who have used the same techniques without success. We all know people who have done all the “right” things: eating healthy, exercising, meditating and examining oneself psychologically and spiritually, and still struggle with their health; just as we know people who do all the “wrong” things: smoke cigarettes, drink excessively, or have a poor diet, that have no health problems and live into their nineties. The truth of the matter is we don’t always know why some people get better and some people don’t. We are complex and multifaceted beings and what works for one person may not work for another. To declare that “disease cannot live in a body that’s in a healthy emotional state” or “you can think your way to the perfect state of health” is just not always true, and certainly not because someone is more advanced spiritually than another, as seems to be implied.
Often, the way the concept of creating your own reality is presented is that we have total and absolute control of it; in fact of anything in the universe. To me, that conjures up the image of an all-powerful God, ready to intervene in any situation and create whatever (S)He wants. From what I observe, I don’t see that we or God have that kind of power. I think a better way to explain this is that we are cocreators of reality. That is, we cocreate with that which is larger than ourselves (God or Spirit), along with being affected by our DNA, other people, societal beliefs, our environment, etc. Therefore, we can influence our reality, we can direct our energy, we can become channels, but there’s a mysterious element involved in the alchemic process of manifestation that’s beyond our complete understanding
I’d also like to state the obvious here, and that is that being in a body is a limited experience. Even if we have exemplary health all our lives, at some point, we die and shed these bodies. I believe we are spiritual beings adapting to physical form and part of what we are learning here is how to live within the confines of that form. Therefore, it also follows that what is possible to create in this physical realm is also limited.
Now, let’s investigate for a moment, those implied beliefs that our health challenges could be due to bad karma from a past life and if we just focus enough positive energy on ourselves, we could heal our bodies. Buddhist teachings state that some illnesses are due to our past lives, and how we handle these conditions will not show up until the next life. Now, this viewpoint might not always be true either, but it gives us a different perspective for a moment, doesn’t it? We don’t all heal in the body in one lifetime. In fact, my own spiritual teacher has suggested to me that the reason we have many lifetimes is that it takes us that long to integrate the many lessons we need to learn.
Another Buddhist perspective is that instead of seeing illness as bad karma from a past life, think of it as karma ripening, and therefore, something one can be grateful for, so that now we can be ready to explore the teachings that come with it and grow spiritually. This viewpoint allows us to see illness as an opportunity and a sign of evolvement, not a punishment. In this sense, we are spiritual warriors, not victims or spiritually deficient in some way. We can now shed any shame that we’ve taken on due to statements like : “Love and gratitude can dissolve any disease”, after we have diligently practiced those very attitudes and still remain ill.
I have heard it said that to maintain perfect health, one must “think perfect thoughts” —- but what does that mean, anyway, and how does one go about doing that? From my many years of meditating, I have come to see that our minds are full of all kinds of thoughts from “I wonder what I’ll eat for lunch today” to “I hope Uncle Irving doesn’t get drunk again this Thanksgiving”. Would either of those qualify as an “imperfect” thought? And, to be mindful of our thoughts and how they affect us is one thing, but to try to control them as this way of thinking suggests to me, is another thing altogether. Have you ever tried not to think certain thoughts? They just persist with a vengeance. I prefer a gentler technique, which is to watch one’s thoughts and simply allow them to be, understanding that who we are is beyond thought. We all have all kinds of voices in our minds; ones that praise, ones that criticize, ones that doubt, ones that warn, etc. My experience tells me that we are better off understanding that that’s how the mind works, instead of trying to manipulate, which only backfires on us anyway. When we allow all our voices simply to be, we develop an expansive mind; one with humor and delight: “Oh, here comes that thought about my father again!” and cultivate a sort of benevolent tolerance to whatever arises, creating a healthier approach to not only our minds, but to life itself.
The one-pointed view that we each create our own reality, besides being over-simplified, often feels cold-hearted to me – an attitude that we’re here on our own; you create your reality, I create mine, and if one of us ends up in difficult circumstances, we’ve brought it upon ourselves, and it’s up to us and only us, to bring ourselves back to some imagined state of perfection. I feel this misses the mark: It doesn’t speak to our interconnectedness, the fact that we need each other, or rely on one another. It bypasses our humanness. It doesn’t speak to the deeper questions we could be asking ourselves. Yes, it’s good to question if we have had a part in creating our illness (or any difficult situation), but let’s add other questions to the mix, like: How can I use my illness to become a better human being? How can this experience deepen my capacity to love? How can I learn to love unconditionally? How are we all interconnected? How can I tap into my innermost self?
I’ll end with a quote from Marianne Williamson’s book A Return to Love.
“Our bodies are merely blank canvases onto which we project our thoughts. Disease is loveless thinking materialized. This doesn’t mean that people who have contacted a disease thought lovelessly, while the rest of us didn’t. Great saints have contacted terminal illnesses. The lovelessness that manufactures disease is systemic; it is laced throughout racial consciousness. Which soul manifests illness is based on many factors. Let’s say an innocent child dies of environmentally-based cancer. How was lovelessness the problem here? The loveless thinking was not necessarily in the child, but in many of us who, over the years, lived without reverence for the environment, allowing it to be polluted by toxic chemicals. The child’s physical sickness resulted, indirectly, from the sickness in someone else’s mind. Our loving thoughts affect people and situations we never dream of, and so do our mistakes. Since our minds do not stop at our brain casings – since there is no place where one mind stops and another starts – then our love touches everyone, and so does our fear.”
“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.
“The artist is a receptacle for emotions that come from all over the place: from the sky, from the earth, from a scrap of paper, from a passing shape, from a spider’s web.” ~ Pablo Picasso
The following is another excerpt from my unfinished book.
Years ago, during a meditation session, I realized we are beings that are constantly creating, if only in our thoughts. I also realized that when we are in the act of creating something, we are connecting with Creation itself. A special relationship is forged as we link up with that essence, and we feel energized, plugged-in, an open channel. Any act of creation begins with that connection and ends with an outer expression of that connection. This process is healing as we feel those creative juices flow through us and we find yet another way to connect with our innermost self.
Finding a creative outlet can be very useful for those of us with chronic health challenges. Instead of vegging-out in front of the TV, getting lost in cyberspace for hours, or spiraling into depression or anxiety, we can focus our energy toward something that really nourishes our spirit. When we are being creative, we can shift our mood and
redirect that energy, transforming the chaos of fear or despair into the exciting chaos of creativity and by doing so, free up any numb, stuck places. It gives us a constructive outlet for all that we experience.
Being creative doesn’t require a certain level of expertise. Anyone can pick up a pen or a paintbrush. What is required, is a desire to play, to experiment, to explore, and to listen to what wants to be expressed. It also doesn’t mean you have to end up with a polished finished product. The outcome is often beside the point. Being creative can be as simple as playing your favorite music while dancing in your kitchen, or doodling on a piece of paper while you wait in a doctor’s office. It doesn’t mean you have to write a novel or to be published to write, or paint a landscape and have an art show to dabble in watercolors, which is really good news for those of us with limited energy. What’s important is to be engaged in the process and to allow the creative force to move through you with as little constraint as possible.
Most of us, at one time or another, experience blocks in our creativity. I think a large percentage of the time the reason for this is the critical voices in our head: “I’m too old for this”, “I’ve never taken a class”, “this is stupid”, or “Debra is really good at this – I’ll never be as good as her”.
During meditation, when critical voices arise, I try to recognize their tones for what they are, and to the best of my ability, take note of them and continue meditating. They can be handled the same way in regard to creativity. When the critic starts in, we can just say hello and continue what we’re doing. If it persists, we can set aside what we’re doing and take out a journal and let the voices have their say. We can write it all out as if they were talking and write until we can’t write any more. We may uncover something useful: We may recognize the voice of our mother, or our second grade teacher. Then, when we’re through, we can go back to writing that poem, creating that dance, painting that picture.
Another way of freeing up blocks is to try a different outlet for a bit. If we’re blocked with the still-life we’re painting, we can try our hand at a clay sculpture, or pick up the kazoo. There is something about trying out a different venue that can free up stuckness in another. It may be just that by taking a break from your particular creative endeavor and putting your attention elsewhere that makes a difference, or just allowing space for the flow of creativity, but I’ve seen this happen many times within myself.
Tapping into the creative can be a powerful and intense process that can have the side effect of bringing about a healing catharsis. I have a friend who began to have memories of early childhood sexual abuse. She started to make abstract pictures – nonverbal expressions of what she went through so long ago. She had never tried her hand at art before, but suddenly felt a compelling need to do so. During the process, she became possessed – spending hours working on them, for weeks. Afterwards, she had a series of probably ten pictures, which she shared with friends. The pictures were haunting and disturbing, especially the first ones, and then they became lighter and more hopeful, reflecting her inner process.
Another friend of mine had a car accident and suffered head trauma. She ultimately had to leave her job, because of her incapacitating symptoms. The accident changed her life completely and she was obviously distraught. She, too, began to make abstract pictures with an urgent need to express herself. Making these pictures became her main focus, churning out several pictures daily.
Creating an expression of your particular health challenge may be something you want to do.
Also, finding an outlet that is non-verbal can reach into the deepest parts of ourselves that are beyond words, and
can satisfya profound need in us.
One particular hard time in my life, I was experiencing partial seizures regularly. Because of cognitive problems, describing in words how my body felt was too difficult for me, so I drew a picture instead that was
much more expressive of my inner experience. Everyone I showed it to, had a visceral reaction to it that gave me a sense that they understood how it must feel to be me, leaving me feeling more connected with them and less isolated, altogether.
When I’m not feeling well, but want to dabble in something new and different, I can easily become overwhelmed and can’t think of what I’d like to do. When that’s the case, I choose from a list of things I made up when I was feeling better. You might want to do the same for yourself. The following is a list you might want to consider, made up of activities that range in energy level.
Try this: Take a small jar and fill it with some dried beans. Put on your favorite music and shake your new, instant percussion instrument.
Try this: Take out a pad of paper and pick a topic, any topic, and for the next ten minutes, write without stopping and no crossing out. Just let your mind take off. This technique was developed by Natalie Goldberg, who has written many books on writing as a spiritual practice (1986). To stimulate your creativity, I highly recommend Julia Cameron’s books.
Try this: Make a collage. Your library or your doctor’s office may have old magazines that they’ll let you have. Bring the magazines home and cut out images and/or phrases that appeal or inspire you. Have fun with it. You may want to have a theme in mind when you do it, or just want to create something of beauty you can look at later.
Try this: Buy a cardstock and envelopes at a craft store. Use some of the images you cut out for collages and in no time flat, you have pretty cards for various occasions.
Try this: Make a model from a store-bought kit.
Try this: Buy adult coloring books at your local bookstore. Instead of using crayons to color with, buy a small set of watercolors, instead.
Try this: Buy a set of colored pencils and a pad. Put on your favorite music and let yourself go.
Try this: Go to the library, to the arts and crafts section and peruse. If something catches your eye, check it out.
Try this: Make a list of all the creative hobbies you’ve always wanted to do. Remember how you’ve always wanted to knit a sweater? Now’s the time.
Try this: Go for a walk. Collect pine cones, sticks, shells, a feather. Buy an embroidery hoop at a craft store. Make a mobile.
Consider this: Creativity with others.
The other day, when feeling too ill to write, I took out my colored pencils and pad of pages, and my caregiver and I made some drawings. I decided my cats were the perfect inspiration.
Try this: Using watercolors, colored pencils, pastels or??? and a big pad of paper, create an abstract picture of your symptoms. Don’t overthink this … just grab colors that speak to you, and go. Because symptoms fluctuate, you may want to do a series of pictures. What was it like to do this? How do you feel afterwards?
“The idea is like a blueprint; it creates an image of the form, which then magnetizes and guides the physical energy to flow into that form and eventually manifests it on the physical plane”. ~ Shakti Gawain
“In a general sense, all artists are shamans, insomuch as they are channeling images or concepts on behalf of the collective”. ~ Vicki Noble
I haven’t read many blogs or read much of the ones I’ve looked at, because my sensitive nervous system becomes too agitated when online. I also haven’t seen something that has sparked my interest on the topic I was looking for; chronic illness & spirituality and how they intersect. Therefore, I thought I’d start my own blog with the help of a caregiver who will set it up and type out all my entries.
I’ve written a lot about chronic illness & spirituality, particularly about my own experience which includes seizure, anxiety and sleep disorders. I even tried to write a book on the subject but found it too much for me to pull off. I thought a blog might be a better way to express myself – more manageable. This way too, I could include essays, stories, poetry and journal entries, and in this way, hope I can connect with others, perhaps starting “conversations”. My caregiver could read or print out any responses. This too, would give me a sense of purpose and a project to focus on that I could carry off.
So, I will start with the following entry – an excerpt from my “book”.
I am thirteen and in the eighth grade and it is recess. It is raining, so instead of going outside, I am in the classroom watching a few classmates pitch pennies against the wall. The next thing I know, I am waking up in the nurse’s office groggy, confused and with a splitting headache.
My parents are told I went into convulsions. Although they say nothing about what they are feeling, I feel their worry tighten around me like a pack of nervous dogs. I feel no concern myself — after all, the next day after sleeping deeply I am fine and feel “normal” —what’s there to be afraid of? However, my mother and I go to a doctor who refers us to a neurologist, and I take a test called an EEG (short for electroencephalogram) where wires are attached to my head and my brain waves are recorded. Nothing unusual shows up in the results. The incident remains a mystery.
But not for long. That summer I have another episode. This time I have a feeling before it (what I later learn is called an aura) and a not unpleasant sensation of spinning out of my body—much like the feeling younger children get after twirling around and around. Again, I come to groggy and headachy and all the muscles in my body ache like I’ve run a marathon.
This time my parents witness me convulsing, which of course escalates their fear. Another appointment for an EEG is made. Before I have a chance of going in for the test, I have another episode. At this point I am still unaffected emotionally and don’t understand my parents’ mounting agitation. Like the second incident, I get a split-second warning and then again feel the rush of spinning out of my body. Yes, I come out of it disoriented and by body aching, but again the next day I am fine. It never occurs to me that this could turn into any great difficulty. Up until now I have been quite healthy and vivacious, the thought never enters my mind anything would change that.
This time when I take an EEG, the brain waves show up very spiky. I am given a diagnosis: epilepsy, and I am put on medication. Unbeknownst to me, I have taken my first step onto the path of chronic illness. My life has changed forever.
INTRODUCTION AND INITIATION TO LOSS
It took me many years before I realized my condition was chronic. At first I thought my seizures would go away. I had been “normal” up until then, and with that sense of normalcy came the assumption that I would return to that way of being. Long term illness disability happened to other people…people to be pitied. That wasn’t me. As first, when I started on medication, I assumed that would fix by condition, but it didn’t and on top of that, there were side effects. When I was in my twenties and still having seizures, I discovered “alternative medicine”. I was very drawn to the concept that if one followed a natural course of treatment, one could cure oneself of anything. There were plenty of testimonies that claimed this to be true. I had no doubt if I followed a natural pathway to health that my body would “balance out” in some sort of magical way and I’d be seizure free. I plunged wholeheartedly in this direction and giving up my anti-convulsant medication, which I believed would damage my liver, I began to take homeopathic remedies. Along with that I stopped eating junk food and ate whole organic foods as much as possible.
Yet still my seizures continued. When homeopathy wasn’t the cure-all; I assumed it would be, I just figured another alternative to Western medicine would be the one for me. It was a long grueling process of trial and error with numerous medications and remedies before I came to realize that I would perhaps never cure my seizures, but instead find a way to manage them and that in fact my condition was chronic. And until I would admit that, I couldn’t acknowledge loss.
Perhaps your story is like mine. Or perhaps you’ve had a car accident or have suddenly contracted a debilitating illness. Whichever the case, your symptoms persist no matter what you do. At some point you realize your life has taken an abrupt detour and may never get back on track. Wherever we are in the process we realize our lives have been changed. And with that change we experience loss.
Our loss comes in many forms. The obvious one is the physical changes we experience: we no longer function the way we did in the past. Our bodies don’t move the way they used to, we experience pain, have nausea. When our symptoms are severe enough, it affects us to our core: what can we depend on now? It is not unlike experiencing an earthquake: the very ground under our feet is shaky when we’ve always relied on it to be solid and assumed it would remain so.
But that’s not all. We may lose our job and our financial security, which of course effects us also on a survival level. We may have to go on disability, unemployment or workman’s comp. Often getting the help we need financially takes time, is a source of great frustration and adds to the fear we are already feeling. If we had health insurance through our job, we may lose it. Medical bills pile up and we’re not sure how we are going to pay them. Sometimes we feel ashamed of our loss of financial footing. Along with the loss of job security can be a loss of identity. If our job was meaningful and fulfilling, we not only question how we can support ourselves, but who are we without this job title? We start to lose our place in the world, and we’re not sure where we belong.
We may have started on medications for our on-going symptoms, which may help, but have side effects. Ironically, something we take in hopes of improving our condition, may in other ways hinder us. Pain medications may leave us in a fog. Other medications may keep us up at night or cause our joints to ache. This too adds to our loss. We weigh it out if it’s worth it to keep up with the medications, and the process can be agonizing.
Friendships may fall by the wayside. As first when we became ill, we got a lot of sympathy. But as the days, months and years go by, that sympathy may dissipate. Friends we had so much in common with before, now back off, not knowing how to relate to us now. Our former co-workers who we had so much in common with before, begin to fade from our lives. Someone we used to go to the gym with regularly may not know how to be with us. After not being able to go to social gatherings because we don’t feel well, the invitations slowly don’t come anymore. We may not be able to go, but we feel left out. We sense people’s fears and even judgement, or it may come out more blatantly. We feel their pity in the form of well-intentioned advice or awkwardness which may cause us to retreat and feel betrayed. We’re not sure how to relate either. Our feelings are hurt and yet me may feel too in need of companionship and too confused ourselves in this new emotional landscape we find ourselves in to know how to communicate our needs.
It may be hard to determine at first that what we are experiencing is loss. We tend to associate loss with the death of a loved one or a break up, but a decline in health, whether rapid or gradual is not as well recognized as such. There is much written about the phases of grief that Elizabeth Kubler-Ross presented when she studied those facing terminal illness. The same can be applied to people with chronic health issues—although with us we cycle through some of the stages time and time again, sometimes all during one day.
We begin with a kind of denial or shock, the feeling of disbelief that this is happening to us, that I spoke of earlier. Then we experience a range of emotions: anger, resentment, bitterness, at times, and certainly sadness and fear. We become depressed and experience shame and despair sometimes. We are affected physically—we may feel tired, worn down. We may lose weight, we may gain weight. A kind of raw vulnerability develops—small upsets can affect us deeply and we become too overwhelmed to perform even the simplest of chores: dishes and laundry pile up. We feel lonely and isolated. All these (symptoms) can come under the heading of “loss”.
We may not recognize ourselves and at times seem to lose even our personality. Feeling lousy most of the time, our patience wears thin, and we become disagreeable or argumentative when we used to be lively and playful. We are changing in front of our own eyes and we don’t like what we see. This of course has an effect on our relationships, for we no longer exhibit the type of behavior we once did that people expect from us.
We also grieve our potential—who we could have been if we had continued to be in good health: we may have got that promotion, bought that house. We may have traveled more, done more volunteer work. We may have had children, moved to our dream location. Or we may have just continued as we were, because what we had felt was more fulfilling than what we seem to have now. It is an odd phenomenon, this grieving for a possible future and yet it is as real as grieving for what once was. It is as if alongside our real life with all it’s limitations, there is another life that is active and full of endless possibilities. It is this life that we grieve for.
Acknowledging our health may never be what it once was and the components of loss that come with it is crucial to our moving forward in our life. Coming to terms with our quality of health takes courage and requires a sobering honesty with oneself. On the other hand, it also brings a certain amount of relief. We let up on ourselves and stop pretending we are able-bodied. We stop pushing ourselves so hard to try to live up to the expectations we once had when we had a higher level of energy. We can be honest about our limitations and therefore begin to reconstruct a life that better reflects who we are now. If we need financial assistance, we do what we can to get it. If the friends we had before we were ill don’t support us or understand us, we begin to set about finding ones that do.
CONTEMPLATION ON LOSS
When we take time to explore our loss, we find there is a poignant tenderness to it. It is a feeling so deep in us that it can feel almost private and we may feel an awkwardness in knowing how to express it. By investigating our broken heart, a moment here, a moment there, we have to set aside our fear constructed armor. When we are able to touch our grief with a kind of careful compassion as we might touch a beloved, we discover the sacred within. From this sacred place, can we see that the loss we feel is something we all share as part of the human condition? My loss may come from a different source than yours, but the feeling is the same. Can we, even if for a moment, recognize this shared awareness and let it move us in such a way that we can go through life with a heightened sense of compassion? When we see the face of loss on others, regardless of the reason, can we now draw from our connectedness rather than our (imagined) separateness and reach out to others any way we can? When we are able to do so, this kind of heartfelt awareness gives us a greater sense of meaning and purpose in our life.
Gradually, over time, we may come to realize that this sacred place is a place we’ve been longing to connect with and is a deep well of compassion that is endless and infinite. Can we see that our path of loss has brought us to That-Which-Is-Never-Lost? We have put up walls continually against such tenderness thinking it’s best to protect ourselves from pain, but now we realize that that never served us well. Now that we can dip into that sacred well of compassion, we see that therein lies a strength and knowingness that serves us far better than our wall ever did.