there are times I feel
like there’s a monster
in me squirming around
living in my belly taking
over my life
it’s evil – that’s what it
it also feels like my soul
can’t decide whether to
live or die
that it’s trapped
that it sits in some
kind of purgatory
(not that I believe in
purgatory not that I
am being punished)
today I don’t want to write
about how to lift my spirits
but how this monster
lives inside me
all day all night
epilepsy for me isn’t
about having seizures
or not having seizures
it’s about something other
than myself ruling my body
something I have no
*#>&%!! control over
something that doesn’t
wish me well
that’s how it feels
stuck being life and death
but then here I am living
on the planet and I gotta
pay bills and eat and bathe
and feed the cats and do errands
and try to act like a normal person
I’m not normal
and it’s hard you know
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
“Babies Laughing at Dogs” https://youtu.be/PuNLqr0oZeo
“Someone Should Start Laughing”
I have a thousand brilliant lies
For the question:
How are you?
I have a thousand brilliant lies
For the question:
What is God?
If you think that the Truth can be known
If you think that the Sun and the Ocean
Can pass through that tiny opening
Called the mouth,
O someone should start laughing!
Someone should start wildly Laughing –
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.
Ryan Niemiller, Comedian https://www.cripplethreat.com/
Humor can be as simple and spontaneous as this:
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.
Kataria, M., Dr. (2010, June 11). Dr. Kataria explains laughing yoga & steps [Video file]. Retrieved from https://www.youtube.com/watch?v=oskT-EAkwl4
Nichols, M. (Producer, Director). (1996). The Birdcage [Motion Picture]. United States: United Artists.
Niemiller, R. (2019, December 1). The triple threat of comedy: Ryan Niemiller comedy reel. Retrieved from https://www.cripplethreat.com/
Reynolds, GailsAvon. (2012, October 10). Babies laughing at dogs [Video file]. Retrieved from https://www.youtube.com/watch?v=PuNLqr0oZeo
Rudin, S. (Producer), & Duke, B. (Director). (1993). Sister act 2: Back in the habit [Motion Picture]. United States: Touchstone Pictures.
Sedaris, D. (2018). Calypso. New York, NY: Little, Brown and Company.
Smith, J. S. & Key, F. S. (1918) Star Spangled Banner. Oliver Ditson. [Notated Music] Retrieved from the Library of Congress, https://www.loc.gov/item/ihas.100010134/
Susan Types. Dalai Lama image from http://www.susantypes.com/well-hello-dalai/ “Well, Hello Dalai”.
“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 satisfy a 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
DEAFinitely Dope: Handing rap music to the deaf
Matt Maxey was diagnosed with profound hearing loss at an early age but has made music his life’s passion. DEAFinitely Dope: Handing rap music to the deaf Matt Maxey was diagnosed with profound hearing loss at an early age but has made music his life’s passion.
Cameron, J. with Bryan, M. (1992). The artist’s way: A spiritual path to higher creativity. New York: Publishers J. P. Tarcher/G.P. Putman’s Sons.
Cameron, J. (1996). The vein of gold: A journey to your creative heart. New York: Publishers J. P. Tarcher/G.P. Putman’s Sons.
Frida Kahlo (1945). Without Hope. From www.fridakahlo.org
Goldberg, N. (1986). Writing down the bones: Freeing the writer within. Boulder, CO: Shambhala Publications, Inc. Also online at: https://nataliegoldberg.com/
Pablo Picasso quote.
Sunny Skyz (2016). They Start By Rubbing Their Palms Together. You’ve Never Heard ‘Africa’ Like This Before: The Angel City Chorale uses a very unique intro for this outstanding performance of Toto’s “Africa.” From https://www.sunnyskyz.com They Start By Rubbing Their Palms Together. You’ve Never Heard ‘Africa’ Like This Before: The Angel City Chorale uses a very unique intro for this outstanding performance of Toto’s “Africa.”
Taggart, Emma (September 6, 2018). My Modern Met. Artist Illustrates His Battle with Depression as a Mystical World of Spirit Animals. https://mymodernmet.com/depression-illustration-jungle-animals-dawid-planeta/
Vincent Van Gogh (1889). Starry Night. From Starry Night
YouTube (May 27, 2016). “Everyday People”, produced by Playing for Change with Turnaround Arts. youtube.com
YouTube (April 13, 2018). “Love Train”, produced by Playing for Change with Turnaround Arts. youtube.com
YouTube (February 7, 2011). “Redemption Song”, produced by Playing for Change. youtube.com
Playing for Change http://www.playingforchange.org
There are times when dealing with our health concerns that surrendering comes into the picture and becomes a quality that would serve us well to cultivate. When we are waiting for our test results from the laboratory or wake up with a migraine on a day we planned to get a lot done, we learn to give up control and let go. We have learned from the past that pushing ourselves in this state only increases our pain and that worrying about the outcome of our test results only causes us more distress. Often, excruciating symptoms can bring us to our knees and give us no choice but to relinquish control and surrender.
The act of surrendering is a humbling one. We are reminded that something bigger than ourselves is holding the reins and that by recognizing this, we find a way to allow our life to unfold, instead of forcing our will onto it. Twelve-step programs have developed the slogan “Let go and let God” and turning it over to a higher power greater than oneself, when we end up getting too much in our own way to do us any good. For those uncomfortable with the word “God”, they can exchange it with the concept that we are not always completely in charge of our circumstances and may have to put into place a different way of handling our present challenges, than worry and agitation.
The act of surrendering doesn’t mean we roll over and give up and do nothing. It means we allow energy to move through us and not manipulate it, thereby allowing The Great Mystery to unfold and leaving room for spirit to come into our life. When we become open like this, our intuition can be tapped, new solutions can come to us or just the understanding that for now, maybe all we need to “do”, is rest or putter around in the garden that day or get some support from a friend.
Surrendering control may be something we have to do over and over again, if we are particularly anxious; like waiting for those test results. Surrendering takes practice like any other spiritual discipline and we may need constant reminders. We may notice that the way we are going about finding an answer to resolve our health issue has become too obsessive, i.e., going from one practitioner to the next without taking time to reflect on why this might be happening in the first place. It may be better for us in this case, to slow down a little and recognize that underneath this behavior is fear, and we might be better off to explore that fear and see what that has to teach us, rather than go about our health care in a frantic, grasping way. When fear rises again and again, surrendering can become the anecdote that calms us down.
Story on Surrendering
When I was in my twenties, I lived communally on land, with a small group, during the 70’s. I loved living there at the time, but for various reasons, the community was breaking up and individuals were moving on. I was unhappy with this idea, but I had no choice but to move on, too. I realized I relied on the others to be there in case of a seizure, but who could I rely on now? On top of that, with the stress of the dissolvement of the group and the stimulation that came from living communally, I had had a few seizures and came to the conclusion that I couldn’t take care of myself. Appallingly, it seemed to me, my only option was to pack up all my things and go stay with my parents – the very people whose way of living I felt estranged from and who I felt lived the opposite to what we had been trying to create on land, where I had been living. Not only that, but I needed help packing and couldn’t fly on my own – my mother had to come and get me! For a young woman out in the world on her own, developing new ideologies with others that branched away from the norm (with a lot of judgement towards others, I might add), this was beyond humiliating!
Once at my parents’ house, it took months for me to fully recover. Not only did I have to put aside my youthful ideals, but I had to let go of the elemental independent way of living we all usually take for granted. Most of the time, I couldn’t prepare meals for myself; my mother did. I couldn’t drive, so I had to rely on my father to get anywhere. Some part of me knew I was fortunate; that I had loving parents who could take me in, but my false pride wouldn’t allow a full appreciation of this fact. I chafed against their ways that I perceived as outdated and steeped in sexism, but felt I had to keep my mouth closed, because I was reliant on them for my basic needs. At times, I resented this, making it easy to resent them.
Although I wasn’t very good at it, I was forced to surrender. I had to put aside my beliefs and my prized independence in order to get my needs taken care of. I felt ashamed and humiliated to be in this position, and because of this, couldn’t fully give in to the feeling of surrendering, which made everything that much harder.
More than twenty years later, things have changed a great deal. I am more apt to be honest with myself about my limitations and needs, although, there often seems a layer of resistance before I let go and accept my circumstances. I no longer carry around the arrogance I used to have in my twenties that made me feel I was somehow more evolved than others. Having had to, time and time again, ask for help over the years, has led me to replace humiliation with humility and a letting in of others in my life I may not have otherwise, which expands my spiritual path that much more. When we only let in those who have the same ideology and lifestyle as ours, we develop a narrow way of being and living. I believe I have a more developed sense of gratitude in general, because of having to let others in, by way of caregiving for me. All this I’ve gotten from the gift and act of surrendering.
Buchanan, M., Numerology Guidance Cards. https://www.michellebuchanan.co.nz/numerology-oracle-cards/
Hazelden Betty Ford Foundation. Letting go of our need for control frees us. https://www.hazelden.org/web/public/hff11022.page
Here is another quote from the book I was writing on chronic illness, that never came to fruition.
“Faith includes noticing the mess, the emptiness and discomfort, and letting it be there until some light returns.” ~ Anne Lamott, 2016
In writing this book, I realized it would not be complete without a chapter on faith. Growing up in a family where there was disdain towards anyone with any religious or spiritual beliefs, faith was a sticky topic for me. Of course, upon examination, faith has more than one meaning. Putting aside religion for the moment, one of Webster’s definitions is “allegiance to any duty or a person”, or another; “complete trust” (Merriam-Webster Dictionary). The New Oxford American Dictionary has this one also: “a strongly held belief or theory”. I realized, too, there are many kinds of faith: blind faith, unshakeable faith, to name a few. Along with that, we can have faith in all kinds of things besides God or a Higher Power: one’s own goodness, one’s marriage, one’s friends. We can have faith we’ll make through the night.
In the realm of chronic illness however, what do we put our faith in? Do we, for example, put our faith in our health practitioner, our new medication, our new diet? Perhaps, but living in the western world, where there are so many choices out there, it can be overwhelming – which modality should we trust? Because we so badly want to be well, and therefore want to believe in the experts and what they have to offer, we may end up putting our faith into someone or something, that if it doesn’t work out for us, can leave us disillusioned, and/or helpless.
What would empower us more in this regard, is to put our faith in what we know to be true. In other words, if I am going to a doctor’s office for the first time, I know I’m going to feel vulnerable, so I will bring my partner, or a good friend, or caregiver along – someone who’s got my back. Because it’s easy to get off track once in the office, I bring a list of questions, any forms I may need. I may even record the session so that I don’t miss any valuable information and so I can stick to my agenda and get the most out of that appointment. Then I listen to what they have to say and how they respond to me. Besides listening to this information, they are giving me; possible medication to take, tests, etc., I listen to who they are and how they came across. In other words, do I trust them? Are they compassionate (Although compassion is not always necessary for me to get what I want in the modality of treatment, it is an added plus, and is part of the care I ultimately seek.)? I also ask myself if their response to my situation reflects an understanding that PTSD is a part of what I need to be treated for, as well as the neurological part. Do they hear I am sensitive to medications and that I want to start on a small dose, first? Essentially, what I’m putting my faith in is myself. I am using my experience and my intuition to determine if this is the right person for me to work with and if I believe what they are offering me is something I think could help me.
I learned to do this based on past mistakes and experiences. I could tell you many stories of what not to do, but I will recall only one, here. One time, many years ago, I made an appointment with a neurologist that lived nearby and had been recommended to me. It had been years since I had contacted a neurologist, because I had wanted to explore more alternative and natural choices, but I had been having partial seizures and they weren’t going away, and, as a last resort, I thought I might want to go back on medication, at least temporarily. Unfortunately, I went to the appointment alone. During the time I spent with him, he not only did not smile at me when we introduced ourselves to each other, but he never once looked me in the eye or made any real human contact with me. When he learned that I hadn’t been on medication for years, his tone was condescending and judgmental. I should’ve left right then and there, but I felt trapped and needy: to find and go to another neurologist would take time and effort; two things I felt I couldn’t afford. During his interview of me, he of course asked me about my symptoms. Because of my weakened state, as I described them in detail, I began to cry a little as it brought to mind all the difficulty I had been in for some time. I felt extremely uncomfortable doing so in front of this seemingly unfeeling man but found it impossible to hold back the tears. As I cried, he looked unconcerned, and continued taking notes, without a change in tone, an offer of a tissue, nothing. When I left the office, prescription in hand, I felt raw, exposed, unseen, and judged. Later, I was to find out that all doctors, at least during the time of his education, are taught to be detached from their patients, as to not become too involved. I believe a little compassion goes a long way, and that becoming skilled at being dispassionate can be detrimental to both doctor and patient.
Much later, I learned that he wrote in my chart that I was “emotionally disturbed”, which triggered a lot of anger in me: How is shedding some tears about one’s difficulty “emotionally disturbed”? Besides that, that kind of labeling had an effect on subsequent doctors; something I had to correct.
I learned a lot from that one office visit. I will never again go alone to a new doctor for the first time, especially a specialist and especially if I’m having a difficult time. That way, if I am too beat down by my symptoms to speak up for myself in ways I would normally, I have someone who will. I have also learned to look at my medical chart if I want, that it is my right to do so, and that I can clear things up if needed. I have learned, in essence, how to be my own advocate. I have learned to trust myself. In comparison to that doctor and the naturopathic doctor I am now seeing, I am treated with respect and compassion. I am asked about my emotional well-being, as well as my physical symptoms. If I am a little emotional, I am not ashamed because of it. I feel seen as a human being and not just another body showing up at her office. When I leave, I feel listened to and taken care of.
Especially in the onset of our illness, we can be extremely vulnerable and uninformed, leading us to possibly act with blind faith. When we feel desperate or scared, we may make choices that end up creating more difficulty for ourselves. We can certainly have blind faith in doctors or practitioners, for example. We may take as absolute truth their diagnosis or recommendation without getting a second opinion or doing research on our own. We may, in our despair and brokenness, look for deeper meaning in our illness and turn to spiritual “experts” who abuse their power and wound us. We may get a psychic reading, for example, from someone who tells us that we are sick because we’ve embraced negativity and that all we need to do is to think positively, and in our fragile state we start to believe this is true.
Here is an example of blind faith: I once knew a woman I will call “Rose”. She began to have discomfort in her back, and, like most of us would do, she went to a chiropractor. After a series of adjustments, her discomfort only worsened. She then tried other practitioners; at first, only alternative. She was a true believer in the power of positive thinking and used affirmations as a daily practice. She had no doubt that she would return to perfect health. Yet, her condition worsened. Friends and family started to worry and encouraged her to seek out standard Western medicine and get some basic blood work done. She gave in, eventually, and it was discovered that she had bone cancer at an advanced stage. Undaunted, she continued with her affirmations and “knew” she would cure herself. After about a year, she died from the cancer, still, I was told, believing she would live.
It is one thing to have a positive attitude, and, since miracles are known to occur, it’s good to have an open mind to all possibilities. But it’s another thing altogether to live in a fantasy world with rose-colored glasses on, believing that only the outcome we want is one that will occur. After all, we will all die someday. If Rose had been willing to take off her own rose-colored glasses, she may have been diagnosed early on, and therefore, been able to get treatment and live a longer life. Or, barring that, she may have died facing reality: that her time on earth was coming to an end and to prepare herself emotionally and spiritually for that outcome.
“Yesterday’s faith does not wait for you like a dog with your slippers and the morning paper in its mouth”. ~ Anne Lamott, 2014
What happens during those times when we lose our footing and we stumble or fall? What happens if we lose faith altogether? We may lose faith in our practitioners, our health regimen, or simply, if we’ll have another “good” day. We may lose faith in our body’s ability to heal after we get our test results back that reveal that cancer had returned.
This may lead to times when even greater doubt sweeps in and our spiritual beliefs are challenged. Suddenly, all the practices we used to cherish seem forced or uninspired. Meditation seems too difficult to pull off, because we just feel too lousy to concentrate. Perhaps we heard that the spiritual teacher we put our faith in has done something we think is a little, or a lot, shady. Or, even though we may have had experiences that reveal to us that there is something greater than ourselves that we can depend on, when unrelenting pain begins to take over our body or meditation doesn’t work anymore, those experiences become dim memories. “God” or “Spirit” or “Higher Power” now seem like mental constructs that hold no real meaning or comfort for us. Perhaps we feel that God had abandoned us. We can’t pray, because we don’t know who we’re praying to, and we’re not sure anyone’s out there. Doubt and fear move in and cloud our thinking. Now what?
For most of us, this is a difficult and uncomfortable place to arrive at. We need answers, we need something to rely on! In our vulnerable state, there’s a tendency to want to grasp onto something and yet there’s nothing there. This can feel confusing and frightening and leave us in a fragile state of mind.
But, re-examined with an attitude of great care, curiosity, and, if we can manage it, a dash of humor, this place can begin to feel spacious and even freeing. If we don’t know, or aren’t sure, we find ourselves floating in this space of unknowing, with nothing to cling to – not God, a teacher, a diagnosis, or a plan. We are free of any constraints, or even beliefs. There’s an openness there, a freshness we can bring to our life. Sharon Salzberg, Buddhist teacher and author, speaks eloquently about the differences between beliefs and faith: “With their assumptions of correctness, beliefs try to make a known out of the unknown. They make presumptions about what is yet to come, how it will affect us. Faith, on the other hand, doesn’t carve out reality according to our preconceptions and desires. It doesn’t decide how we are going to perceive something, but rather is the ability to move forward, even without knowing. Faith, in contrast to belief, is not a definition of reality, not a received answer, but an active, open space that makes us willing to explore. While beliefs come to us from outside – from another person or a tradition or heritage – faith comes from within, from our active participation in the process of discovery”.
When looked at more deeply, this free-floating openness may feel familiar – we may have come here before. We may have come to it for other reasons than our health or crisis of faith. Maybe it happened the first time we developed strong feelings for someone. We didn’t know what to expect – we never felt this way before! Maybe we weren’t sure how the other person felt and that made us feel vulnerable. Now, we realize, we are experiencing that same sort of vulnerability – we’re not sure of anything! We may have developed new symptoms and have no diagnosis, or feel conflicted about our spiritual beliefs, but in exploring that vulnerability, we also experience a certain kind of innocence. It’s as if we are looking at life with new eyes. If we look back on those other times, we can see that, eventually, we got answers. Eventually, we understood what was happening. We got a diagnosis. We found out that the other person we had feelings for felt the same way and we ended up developing a relationship with them. The unknown became known. This in-between place, where we float freely, is called faith. In other words,
“When you have come to the edge
of all the light you know
and are about to drop off
into the darkness of the unknown,
faith is knowing
one of the two things will happen:
there will be something solid
to stand on,
or you will be taught how to fly”.
~ Patrick Overton
Meanwhile, while we take that leap of faith, we are in that between place, whether waiting for test results, wondering if we should see one more practitioner, or struggling with our spiritual beliefs, what we can always rely on, what we can believe in, is this present moment. We can always trust what’s right in front of us and bring our presence to it. By doing this, we fully commit our entire being to be with what is, right here and now, and come into our spiritual power. In other words, I can, without a doubt, know the texture of this moment: my fingers moving across the keyboard, the sound of my cat eating her breakfast, the openness of the white page before me. Or, if confusion and doubt are what’s arising, I can explore these mind states with the compassionate awareness I’ve come to know in meditation. I need no proof from any other sources to guide me. By becoming present, I am not borrowing beliefs from someone whose spiritual knowledge I perceive is more advanced than mine… Here is this moment before me with everything it holds. Understanding that, I believe in the next moment and the next. In this way, I am putting my faith in all these moments strung together. I know I can make it through this moment, which gives me the confidence to make it through the next. Just as in meditation, we build a kind of faith by strengthening our ability to sit with whatever arises; fear, impatience, the ache in our knee, etc., we begin to trust in our innate ability to handle the unfolding of our life, whether gracefully or clumsily, and always courageously.
Twelve-Step programs offer the sage advice “one day at a time”, but for people living with chronic illness, sometimes it comes down to one moment at a time. In fact, this is one of the biggest lessons and gifts of chronic illness and one of the highest and honorable spiritual teachings we can receive as human beings. Even if we’re doing better lately and not facing any new crises with our health, we don’t know how we’ll fare tomorrow or perhaps even later today (Of course, this this is true for anybody, whether chronically ill or not; it’s just that truth is more in our face than those whose health is more predictable).
By living in the moment, life slows down and we come to appreciate the preciousness of life in all its simplicity: sunlight streaming through colored glass, our heart beating in our chest, the sound of a hawk overhead. I remember, for instance, one time when I was recuperating from a seizure at my parents’ house, I would often lay on their couch and look out the window. Directly in my view was an elegant redwood tree. I would focus on this tree until it became a part of my healing. At times I felt I “entered” the tree and became its beauty as I lay there with nothing else to do, nothing I could do. To this day, when I visit my parents and sit on the couch and take note of that tree, I feel a special connection with it, as if we are friends.
This kind of slowing down can be applied even when we are doing better, it can permeate our life. If we are stuck in traffic, for example, instead of getting worked up about the inconvenience, can we take the time to watch the breeze move through the grass alongside the highway?
Here is my own story on faith and relying on the present moment: One day, I had to go to the next town, 30-minutes away, for a doctor’s appointment. Although I felt tired that morning, I felt completely able to drive. But, before I left, two friends of mine came over for a visit. Although I was happy to see them, the visit was a little chaotic – we hadn’t seen each other for a long time and there was certain time constraint, because I had to leave soon after they arrived. That led to all of us talking at once and interrupting each other in excited and sometimes loud ways that only close friends can do. When I left, I felt happy, but a little overwhelmed and realized that the visit had taken its toll on me. I questioned my ability to drive, for a second, then dismissed it, because just twenty minutes ago, I felt quite capable. Once in the car a short time later, I pulled to the side of the road, realizing that I felt too tired and unsafe to drive. Luckily, I had my cell phone with me, so I called my partner and told her of my predicament. She told me to stay put, that she would come and get me. While waiting for her, I began to feel slightly seizury. Not figuring I would need any, I hadn’t brought any anti-convulsant medication with me. I knew it would be about a half hour before she would show up. Because of the seizury sensations, I felt very uneasy and exposed parked there beside the highway all alone. I knew I needed to put to use my spiritual practices, but at the moment, they all seemed too complicated to do and involved too many steps. What came to me to do was the very basic meditation techniques of becoming present. Just the thought of remembering this brought a certain peace of mind. I knew, based on many experiences before in meditation, that just being aware of whatever came up in the present moment would stabilize my mind, and it did so in this case, too. Although I was frightened, by bringing my mind to the present, I was able to let fear float, allowing space around it, making the wait much more tolerable. This kind of remembering is based on repeated experiences that allow us to have faith in not only our practices, but in having the confidence in our innate ability to face whatever arises in life.
Crises of Faith
“As human beings, not only do we seek resolution, we feel that we deserve resolution. However, not only do we not deserve resolution, we suffer from resolution. We deserve something better than resolution: we deserve our birthright, which is … an open state of mind that can relax with paradox and ambiguity”. ~ Pema Chodron
I have found in working on many chapters of this book that whatever the topic was, those topics happened to be up for me. This is one of those chapters. During the time that I started working on this chapter, I struggled with two crises of faith. Because of this, I sometimes felt anywhere from uneasy to plagued with doubt, lost, afraid, or like the rug was being pulled out from under me. The first aspect of faith that was being challenging for me was within Tibetan Buddhism. Although it is dear to me, there have been certain aspects of it that I don’t necessarily agree with. And yet, because I’m not an expert in the field, and consider myself a work in progress, I can doubt my own gut feelings and experiences, which can shake me to my core. When I began to look for answers by reading different books on Tibetan Buddhism, and talked with experts on the topic, I became further confused, as they didn’t all agree. Who was I to believe? At times, I felt as if I was up against dogma, yet I found it hard to trust my own instincts.
The second crisis of faith was my marriage. After thirteen years of partnership, we came up against issues that neither of us knew how to resolve. Were we going to end up another broken-up couple? Did we have whatever it took to make it through this particular hardship? As I finished touching up this chapter, we ended up healing and solving our problems, but in the process, I felt very lost, confused, angry, guarded and scared. Deep survival issues were at stake for me – if we broke up, I wondered how I would fare, as besides being my life partner, she can act as a part-time caregiver.
With both cases, remembering that with past experiences, some resolve would come eventually. I fell into that unknown space, at first with fear, but then I applied a certain curiosity to the state. When I didn’t project into the future about the state of my marriage, and when I let go of fear about my spiritual beliefs, I found myself free-floating in that space, and, when I really let go, it felt quite liberating, as if I were unattached to anything. Sure, I wanted my marriage to succeed and I wanted to resolve my conflicts with Tibetan Buddhism, but since I was up in the air about both, I sought to become as comfortable as I could in that in-between place; that place of unknowing. In fact, it reminded me a little of the one and only time I went skydiving. Determined to leave my fears behind (and attached to a well-seasoned professional), I jumped out of an airplane thousands of feet above the earth, into space.
When the parachute engaged, I felt this giddy sense of freedom, and intense aliveness as I floated towards the earth. When I landed safely on the ground, I was still high from the experience – a feeling that stayed with me for a long time.
Because the issue in my relationship did resolve, I felt stronger in my marriage than ever. With Tibetan Buddhism, I am not completely resolved, but am learning to trust my own spiritual experiences and validate them as real. When we face our fears full-on, when we don’t run screaming in the other direction, we discover new territories within that can expand our ways of meeting the unknown.
I’d like to end this chapter with a story about three blind people and an elephant. Each part of the elephant that they can feel is what they believe is the elephant in all its entirety. But only one feels its trunk, one feels its side, and one feels its leg. Each only knows a part of the elephant.
Learning from the mistaken conclusions of their perceptions and applying that to illness, we come away with the understanding that at least for now, we may not know the bigger picture, but sense there is one. That is to say, we may not know how we got ill or why, or if we’ll get better. We may not even have a diagnosis, we may not know if the regimen we take up will improve our condition, do nothing, or completely cure us, but we fumble in the dark with the piece of knowledge we do have anyway, trusting in the process as best we can. We may lose our way at times, forgetting that our part of the “elephant” is not the only reality and fall into the darkness around us. Because of that, we need reminding again and again, to have faith. When I need reminding, I rely not only on spiritual teachings and practices, but my partner, intimate friends, caregivers, and my therapist/spiritual teacher. Eventually, holding the hand of others, I become more confident facing the unknown, and the fears that often come along for the ride.
Refracted light is like the human soul –
it can never know its full capacity.
We come to this earth plane
again, and again
not understanding that in these separated forms
we can only find limitations in our surroundings.
Like rainbows that splinter off of crystal
we are denser creations
born of that greater light
left yearning for what we remember.
Faith then, becomes the link
that reconnects us back to that wholeness,
that moves us forward through this life,
that flicker of memory
still lingering in our minds.
Chodron, P., When Things Fall Apart: Heart Advice for Difficult Times. Shambhala (2016).
Edison, M., Poems by Maluma (2013).
Lamott, A., from @ANNELAMOTT tweet November 16, 2016.
Lamott, A., Small Victories: Spotting Improbable Moments of Grace. Riverhead Books (2014).
Maluma’s Leap of Faith personal video. Clips (edited). Original video NorCal Skydiving.
Merriam-Webster Dictionary from https://www.merriam-webster.com
New Oxford American Dictionary, 3rd ed., 2010. Oxford University Press.
Overton, P. – from QuotedHD http://www.quotehd.com/quotes/patrick-overton-quote-when-you-have-come-to-the-edge-of-all-light-that-you-know
Salzberg, S. – Faith: Trusting Your Own Deepest Experience. Riverhead Books (2003).
Links for meditation:
I said I would be honest
So here it goes:
This is one of those days.
Those days I feel seizury,
which doesn’t mean I’ll have a grand mal seizure
but will feel like I can’t figure things out.
I will slur my words and feel blurry
and want to cry and feel like
I don’t belong in this world
and why am I here, really, why???
I am not suicidal, but I hope I don’t
live a long life so how’s that for honesty?
This blog helps me gives me purpose and
meaning and I just hope it helps
someone, even just one person.
Today is a “TV day” where I can’t
do much but watch reality shows and
shows that aren’t too complicated.
I have a caring caregiver here (better
than an uncaring one!) and so that
makes things better. I have a partner
that suffers too, who loves me and
has loved me for years and will love me
for years to come. There are three kitties
too: Reggie, Zoe and Simon, all of who
I adore, so I guess, why complain?
But today, right now, well I wish I
could feel better and think better and
and I know when I bring my attention
to the present moment
Right here, right now
I am ok
this epilepsy, insomnia, anxiety
can bring me to my knees
again and again
so while I’m here
I might as well kiss the earth
and say “thank you”
which breaks my heart open
which teaches me how to love
which is why we are all here.
I walk into Cari’s room. The lights
are dim and the TV is on. When she looks
up at me from her recliner, I notice she is
“Oh. Migraine”, I say, keeping my
words to a minimum.
She sighs. “Yup”.
“I’m sorry. I’ll be quick. I want to let you know a caregiver won’t be coming today, after all”.
“Oh. Who was on”?
“Liza”, I say.
And then I quietly leave the room, closing
the door gently behind me.
As I return to the living room, I reflect on our relationship. Cari and I met through a mutual friend. I had heard she had epilepsy, too, and I really wanted to know how she managed.
I had a lot of compassionate friends, but I knew it would be different if I met someone who dealt with the same issues that I did. I wanted to know: how did she cope? Did she have seizures often? What kind? Did she take meds? Were they under control?
We eventually got together and shared information, and shortly thereafter, became friends. The friendship turned into attraction and we fell in love. A year later, we exchanged vows in a wedding ceremony in our front yard.
When I knew we were falling in love, when I knew this was a relationship I wanted to pursue, I realized at some point we would need help (I had learned in the first few months of knowing her that she had other health challenges, including debilitating migraines, chronic sinusitis, and what eventually culminated in arthritis throughout her body, due to past injuries and years of playing sports. On top of that, she occasionally walked in her sleep!). At first, this help came from friends who were willing to step in when we were both down for the count, mostly to do needed errands. But I knew as we aged, we would need more assistance.
Evening is my favorite time of day, because it means that Cari will come out of her den and we’ll watch TV together for a couple of hours before the caregiver shows up for the night. One of our cats (Reggie) curls up between us as we watch our favorite programs. It’s family time for us.
I love this ritual. We may not talk much, but that doesn’t matter; her presence is really all I need. She gives me something that no one else can, because she understands what it is like to live with chronic conditions and because some of those conditions overlap.
Over the past 25 years, we have seen each other through seizures, pain, emotional ups and downs, struggles with doctors, changes in medications and even menopause. We have figured it out. We get each other. And that gives me incredible comfort, and that is what has kept us together.
There are times, though, when one of us becomes insecure and wonders: Am I too much for her?
Here’s my response when it’s she that feels this way:
You are my rock
not my hard place.
I lean back on your
solid stone so I can
feel the sun on my
face and the breeze
on my skin.
You are an artist.
You take the pieces of me
that are broken
– shattered shards –
and make them into
the light singing through
all of the colors
not leaving even one of them out.
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!
Here are some of the classic symptoms of PTSD:
irritability, angry outbursts, guilt, shame, despair, disgust, anxiety, panic, nervousness, sadness, loss, depression, and overwhelm
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.