Soul Mates

You are all my soul mates.

I cannot live without the

light that comes from your eyes.

If even one of you were to

turn away, I would not be able

to find my way Home.

 

So please, as tempting as

it may be, do not hide in

the cavern of dark secrets

and self-loathing.

I need you. You need me.

This is the raw Truth, my Loves.

 

I have tried many times to

go through life with only

a few cherished friends,

but each of you is essential

to me, and I know now

the same is true for you.

 

If we don’t realize this,

the Candle will either go out

altogether, or only flicker,

and not become the Beacon

it was meant to be.

 

Have I told you that

I need someone every night

by my side so I don’t die of fright?

Come close –

no closer still –

tell me your pain,

and I promise you,

I promise you,

I will not run.

 

My arms are spread out

like magnificent eagle wings.

I long to enfold you

in my wide wild embrace –

I am so eager to remind you

we are One, we are One.

by Maluma

My Offer to You

Would you like to have my poetry books?

Please comment if you are interested in receiving one or both of my books at no cost. For more details and to arrange shipment, I will use your contact information from your comment.

An excerpt from my poem “Savior

… “a small bird whose body

I could not see, saved me.

I sat in my recliner

with all my complaints,

when this tiny chirp

burst into the air.”…

 

Excerpts from my poem “Breakthrough

…”go through this messy and blessed life

thinking we can clean it up

and make it orderly”…

“and we don’t have a lot of say in the matter.

But there is one thing we can do

when grief sails by”…

Mariah Carey at Rite Aid

While standing in line at Rite Aid, I look over at the magazines at the counter. On the cover of People Magazine is a picture of Mariah Carey, with a caption revealing she has bipolar disorder. When I reach the counter, I take a copy and set it down with my other items to buy: a notebook and my favorite pens.

The cashier ringing me up glances down at the cover.

“Mariah Carey’s bipolar?”, she scowls.

“Seems like everybody’s bipolar these days. I think it’s just an excuse. They want attention, or they’re just weak-minded. Sometimes you just got to buck up”.

I look at her tight mouth and flashing eyes and wonder about her life. Does she just “buck up” and push through? Is that how she handles the difficulties of her life?

I must have a shocked look on my face, or maybe my mouth is tightening, because when she looks at me again, she says, modifying her tone, “or maybe she is bipolar”.

“Maybe more people are coming out about it, are being braver”, I suggest.

And with that exchange, I leave.

The conversation bothers me. It’s attitudes like hers that keep brain disorders and mental illness in the closet. All chronically ill people have to push harder to go through life. Mentally ill people have the added difficulty of having a stigma attached, making it hard to feel okay about having an illness that affects the mind.

Why is it such a stigma? The brain is part of the body, not separate from it. So why do we get so judgmental or frightened about mental illness and not as much or at all about other illnesses? Unless someone is violent, it seems no point in being afraid or protecting ourselves. Are we all just frightened of losing control, ourselves? Aren’t we all trying to keep it together on some level, at least some of the time?

Strictly speaking, bipolar disorder is a mood disorder, not a mental illness. For that matter, so is an anxiety disorder. If I’m honest, I feel a sense of relief that I am not labeled “mentally ill”, because I don’t want to be lumped with “those people”. I’m not a psychiatrist, but it seems to me that there is some sort of spectrum. You have people like me on one end, and a paranoid schizophrenic on the other. Am I a better, more respectable, likeable, deserving person because I’m more functional in the world? No.

Personally, I’m happy Mariah Carey is on the cover of People, telling her story. Kanye West gives no apologies for his bipolar disorder. I’m happy Howie Mandell is honest about his plethora of anxieties, even making us laugh about them. When well-known people are outspoken about their mood disorders and mental illness, I think it encourages others to do the same. Maybe by doing so, the stigma of mental illness can slowly slough off because of their willingness and courage; to be vocal about it and be themselves.

We have a long way to go. There needs to be a lot more education about all kinds of brain disorders, until shame is ditched and replaced with compassionate understanding. Everyone can come out of the closet and not fear condemnation. We all deserve to be respected, accepted and treated well by our doctors, friends, and community. We are all part of a greater whole and deserve to be recognized as such. Otherwise, there will remain a fracture in our humanity and we will all suffer from it. And I don’t want that. Do you?

“We’re one but we’re not the same. We need to carry each other”.  ~ Mary J. Blige

Vermont Memory in the 70’s

One day while living in upstate New York, I decide to go with a group of friends to Vermont to stay at one of their parents’ home, who are away for the weekend. I am excited about this, because it is a house in the country and it’s mid-October and I know the colors in the surrounding hills will be bursting with colors. However, as usual, I haven’t been sleeping well and so when my friends decide to go for a hike, I feel too weary to join them, and instead, opt to lie down and rest in one of the big, cozy beds.

I must have dozed off, because the next thing I know is complete disorientation and a sensation of being caught in between worlds – the living and the dead, you could say. I feel incapacitated by fear and that is all I know. I don’t even know my name. I look around me and I can’t recognize anything – not the floral bedspreads, the bedside lamps, the room itself. The fear is so intense, yet so familiar, and then I begin to identify its movement and texture and how it relates to seizures. Am I going to have a seizure? The idea of this further frightens me and I grab onto the bed covers, as if holding on to something solid will help me stay here instead of leaving my body. I struggle again, to make sense of my surroundings, but again, I recognize nothing.

I call out again and again, but there’s no answer. My panic rises as I realize I am all alone.

After a bit, I remember a phone number, but I have no idea whose it is; but in the midst of my intense confusion, it feels like a life saver. Luckily, there is a phone on the bedside table, and I find I am able to retain the numbers long enough and the ability to punch in the numbers, to complete the call.

Someone picks up. “Hello?” – a woman’s voice.

“H – hello?”, I say tentatively, “Do you know who I am?”

I have happened to call my parents in California and my mother immediately recognized my voice. It is a difficult conversation – for me, because I am trying to form thoughts to put into words, and for her, because she is 3,000 miles away and there is very little she can do to help me. Throughout our exchange, I realize that I had a seizure, not that I was going to have one – a phenomenon that repeats itself throughout my life. Although she cannot help me find out where I am, just knowing what happened and who I am is, for the moment, enough for me to calm down a little. Her voice is an anchor for me, and I hang on to it for dear life.

Soon afterwards, my friends arrive, and I sort out where I am and where I live and other basic information.

The rest of the weekend, though, is spent in recovery. I am depleted through and through. I don’t fit into the human realm, yet. I am just a wounded animal, licking my wounds – a scream lodged in my beaten body.

Introduction to Tonglen

The following is an excerpt from my “book” that I wrote years ago.

Introduction to Tonglen

         There are times when, in the midst of recovering from a seizure or getting out of bed after another sleepless night when not only do I feel I can’t face one more minute of my life, but I ask the question many of us ask at some point in time: Why this senseless suffering? What good can come from this? At times like these, it can feel that all I am is an embodiment of suffering taking up space in the world. You may feel this way at times as well, or perhaps you come to these kinds of questions when hearing a news story about war or some other facet of brutality. For me, the Buddhist practice called “tonglen” provides an answer. Tonglen takes that feeling of senseless suffering and gives it a purpose: transforming it into compassion.

Tonglen (a Tibetan Buddhist practice) means giving and receiving in Tibetan or exchanging oneself for another. I find the latter a more accurate description, as one of its benefits is developing empathy. When I am having the most difficulty with my health, tonglen is a meditation practice that has helped me greatly, over the years.

When we practice loving kindness meditation, we tap into that part of ourselves that truly cares about our well-being and that of others. When we practice tonglen, we use that same desire for well-being and deepen our capacity to care. Tonglen, above all else, develops compassion.

But just what is compassion? As Sogyal Rinpoche says in The Tibetan Book of Living and Dying (1992), “True compassion is the wish-fulfilling jewel, because it has the inherent power to give precisely to each being whatever that being most needs, and so alleviate his or her suffering, and bring about his or hers fulfillment”. It may not always be easy for us to experience this valuable and precious quality, for we may have guarded our heart well, thinking that by doing so, we can protect our self from pain and suffering. And, just as we discovered in loving kindness meditation, we may also feel we are undeserving of any kind of tenderness; in part perhaps, because we may feel that on some level, we brought this illness upon ourselves. This way of thinking couldn’t be further from the truth. Because of feeling unworthy, we are more in need of compassion than ever. As people with chronic illness, we have also been on the receiving end of toxic responses, such as fear, pity, shame and judgment (some of which may come from ourselves). These experiences can spark a disconnect with others, bringing with it a feeling of isolation and loneliness. Compassion, on the other hand, is a shared connective experience that brings with it a deep understanding. When we are touched by compassion, we feel seen and accepted. Compassion, and in turn, tonglen practice asks of us to instead of turning away from our pain and suffering, to come towards it, feel it, and in fact, embrace it with the utmost love and attention and with the express desire and intent to transform it. Just as we found in loving kindness meditation, at times it takes great courage and effort to practice tonglen, because it asks of us to not only acknowledge our pain and suffering but know it intimately.

         The Practice

         Preliminary information to practicing tonglen may be found in the “Loving Kindness Meditation” section of my Loving Kindness, Part II blog posted on May 5, 2019.

There are many ways to practice tonglen: The methods I present here are what I consider the most suitable for those of us with health challenges. In some places, I’ve made modifications. If you want to further explore this valuable practice, I recommend you read Sogyal Rinpoche’s descriptions of it in his book The Tibetan Book of Living and Dying or Pema Chodron’s in The Places that Scare You: A Guide to Fearlessness in Difficult Times (2002).

To begin, get in a comfortable position and start with the basic meditation techniques of becoming aware of body sensations and listening to sounds. Then pay attention to breath, becoming aware of its movement throughout the body. Then, for a brief time, note your thoughts and feelings. Become the observer, allowing your body/mind to become expansive as these thoughts and emotions move through you. Align yourself more and more with that expansiveness.

Maintaining this vastness, bring your awareness to your mood. Are you anxious or depressed? Are you feeling irritable because of pain? On the inhale, breathe in any difficult mental or emotional states to your heart, allowing them to dissolve. On the exhale, breathe out calmness and compassion for yourself, cleansing the quality of your mind. It may be that you are only able to touch your hurt or sorrow or pain for a moment here, a moment there, and that’s okay. You may not be used to being so tenderly attentive with yourself, but luckily, you can practice this technique again and again, and by doing so, become more familiar with it. If you have a hard time opening to this self-compassion, you can also start with loving kindness meditation and/or the “jump-start” (see below for quote from Loving Kindness, Part II post) techniques that precede it; remembering you are worthy of love, a time when someone was kind and helpful to you, and then proceed with this practice.

“Traditionally, we begin these phrases with ourselves, then move on to others, building up loving kindness in our hearts. But, although the idea of showering ourselves with loving kindness may seem simple enough at first glance, we may have difficulty with it. We may not be used to such gentleness with ourselves. If this is true for you, or if the words become mechanical, take time to recall an incident where someone was kind to you. It can be as simple as someone letting you into the flow of traffic, or a gentle tone someone used with you when you felt out of sorts. Connect with that feeling and then begin the phrases that work for you”.

I find that by offering compassion to these vulnerable parts of oneself is what’s been needed all along, and if you’re at all like me, you never knew that, or need reminding. There’s a sadness that can come with this awareness – a sadness that we’ve separated ourselves from our own love for a long, long time. What we’ve always yearned for – true understanding – we can best receive from ourselves; for who knows pain better than us? By practicing self-tonglen, we are coming back to our own heart. We are coming home.

For the next stage, you can use your physical symptoms to bring about a transformation: On the inhale, breathe in some physical difficulty and visualize it dissolving in your heart. On the exhale, send that ailing part your love, compassion and healing. Keep this up for as long as you want, or can, and move your awareness throughout your body, the same way. Again, you may be able to do only so much, but that’s okay. Your physical symptoms may remain much the same as when you started, but has your attitude softened? You can add another component to this stage if you wish: any pain you experience, imagine all the people who are experiencing the same pain, and when you inhale, take in their pain as well, and then let it dissolve in your heart. On the exhale, breathe out tenderness and understanding and any other calm that comes to mind and send it to all those people. You can also become creative here and send an image instead, if that makes the practice more intimate. A blanket to snuggle in or a warm hug by a loved one might be good images to send, for example. Sometimes when I include others who are in the same emotional and/or physical boat as me, I feel less isolated, less like I’m the only one on the planet that feels this way, and any loneliness I have begins to diminish or fade away. This may happen to you, too. It’s also possible that the opposite is true – that including others’ pain feels overwhelming. If that’s the case, just come back to doing the practice for yourself or breathe in that feeling, letting it dissolve and breathing out calm.

Because there’s such an intricate relationship between the emotional and the physical, you may want to include both of these steps in one. Also, if you have symptoms like I have sometimes, where much of the body is affected, you can do tonglen for the entire body as a whole. I encourage you to be creative here and throughout the practice. There are probably ways to practice that have never occurred to me that will occur to you. Trust your instincts. This practice may bring up deep sadness and you may want to cry. Please give yourself permission to do so; there is no need to be completely formal about this and tears can be so cleansing.

You may want to stop the practice right here and that’s fine. But, if you’re up for it, you can go to the next stage, which is similar to the one for loving kindness meditation, where we practice for others. Envision a loved one, someone dear to your heart, who is going through some difficulty. On the inhale, breathe in their suffering, whether it be cancer or the heartbreak of divorce, depression or a bum knee, and allow their pain, their struggle, to dissolve in your heart. Besides their suffering dissolving, allow any judgments or fears to dissolve as well. One time, when I was practicing tonglen on someone who was sick, I saw that I had judgment towards her, because at the time, she was still smoking cigarettes. I saw how this judgment blocked my compassion for her and I breathed that in, too. You may fear that by breathing in someone else’s illness, despair, suffering, that you will become depleted in the same way they are. Breathe in this fear, too, and allow it to melt within and dislodge from your heart, remembering to breathe out compassion, peace, etc.

At any point in practicing tonglen for others, you can include, just as you did for yourself, all others who are experiencing the same sort of suffering. For example, if you are doing tonglen for your mother who has Alzheimer’s, you can include all others with the same disease. By adding this piece in, we begin to expand our focus of awareness, causing our hearts to expand as well.

If you still have energy, you can move on to the next stage. Visualize someone neutral in your life; this time someone who you noticed is experiencing some difficulty. Perhaps it is the receptionist at your doctor’s office whose hand is in cast or the bus driver who seemed grumpy one morning and go through the same routine: inhaling their discomfort, letting it melt, exhaling and sending them love. If you can’t think of someone neutral who you know is suffering in some particular way, consider any neutral person – there is probably some difficulty in that person’s life, even if minor. Remember, just as in loving kindness meditation, part of the reason we do this practice in its entirety, is to awaken our heart to all people; not just those that are like us or believe the same things we do.

Then, we turn to a difficult person to practice tonglen for. Again, this can certainly be someone you know, but can also be someone in public office you disagree with or a group of people you don’t know. I have actually used my partner’s health insurance company, who has consistently denied payment on expensive medication that they have repeatedly said they would cover. When I did this practice for them, I saw how angry I was and how that anger hardened my heart, cutting me off from love. What good was hanging on to it doing for me? Although difficult for me to do, I was able to soften my heart and send them some of that soft-heartedness (soon after, they sent a letter saying they finally approved the coverage. Coincidence? Hard to say). Again, perfection is not the goal here – but being aware that we all have our areas of prejudice, fear, and judgment that are difficult to open to and to do the best we can to awaken compassion to those parts.

Instead of practicing tonglen for a difficult person, we could practice for a more difficult scenario, in order to build on our compassion. This might mean someone who is dying, or someone in constant pain. By practicing tonglen for a severe situation, we strengthen our compassion muscle, which is the gift of this practice. By imagining the most difficult suffering and bringing it into our heart on an inhalation, we are able to dissolve our deepest fears about suffering in general and can offer as we exhale, our most tender and heartfelt wish for the well-being of this person or persons in this mental or physical condition.

The next stage of the practice is to imagine all the people you have included up to this point and breathe in their suffering and breathe out compassion, imagining all of them well and whole – similar to the same stage in loving kindness meditation.

After you have finished with this aspect of the practice, you can move on to the other phases – for those in your hometown, country, and the world. The length of time you spend here depends, as usual, on your energy level and the time you have set aside for practice. When you are finished with this last part, bring your mind back to the vast awareness you experienced at the beginning of your practice.

If you have explored the entire practice, you have included all beings into your practice. In doing this, one can see that we all suffer in some way, that as human beings, this is something we all share. Tonglen puts us in touch with universal suffering in other ways, as well, as we begin to see that “my” suffering and suffering in general, all have the same component, whether it comes in small disappointments like losing our car keys to ongoing, grueling pain. Understanding this can have the effect of making us feel less alone and walled-off in our misconception that we are the only one that feels the way we do.

There are days when my suffering seems so great that the practice of tonglen seems insurmountable. You may find this is true for you sometimes. On those days, I don’t formally practice, but try to distract myself with other activities, if possible. However, I like to keep in mind the concept of tonglen to help inspire me and remind me that all suffering can serve to open my heart and awaken me to compassion. One way I do this is, I write the word “tonglen” on a piece of paper and put in on my fridge. That way, when I walk into my kitchen and see my sign, my body and mind immersed in the chaos of great difficulty, I can, for a minute, shift my awareness. And it is my profound belief that this makes a difference, not only for myself in the moment, but for great suffering everywhere. When we keep in mind the concept that all we are is energy; something scientists proclaim and something we see glimpses of in meditation, when we can shift even a little bit of suffering, we are adding a little more peace and clarity to the world.

Many practical and spontaneous ways of doing tonglen present themselves regularly to us, if we pay attention. As a result of our practice, we begin to see how we can be more connective in the world than perhaps we’ve been in the past and how that benefits us. We notice too, how often we shield ourselves from others’ pain and how we can change that.

There are times we can do tonglen spontaneously, using our own suffering, along with others’. I remember one such time when I was detoxing from a strong medication that had ceased its effectiveness for anxiety and insomnia. It took over a month to complete this process and most of that month it seemed every minute of my waking day was extraordinarily difficult, but the nights were even worse. I got very little sleep and my anxiety was off the charts.

All this was happening at the same time Hurricane Katrina hit the Gulf Coast. I watched a lot of TV during that time, because I was capable of little else, and the images I saw of all the poor, abandoned people left me feeling even more disturbed. I felt surrounded by suffering with no sense of relief. Seeing their struggle and pain only seemed to increase my own. On one day a certain story in particular haunted me: A makeshift hospital was created at the airport for some of the victims of Katrina. Because of the large number of patients and the under staffing of volunteers, a place was set aside for the most stricken and the least likely to live, while the ones who had a better chance at survival were attended to. This horrified me when I heard it and when I couldn’t sleep again that night, I remembered this story and it filled my heart with dread. How could it be that these people were left alone to die without the comfort of friends and loved ones? I tossed and turned, wondering about their own despair – what was going on with them now? What was going on in their minds at this exact hour? At the time, I was hooked up to an oxygen machine, set up as a result of a sleep study that showed I have mild sleep apnea. I laid there with my disturbing thoughts, listening to the machine whose rhythmic push-pull of air was somehow soothing – like a giant person next to me, breathing. Then I remembered tonglen and its basic teaching of breath, and that any suffering could be used to transform into compassion. Bit by bit, I chipped away at the claustrophobic, emotional state I was in. At times, waves of panic or despair would wash over me. Most of the time I was unable to concentrate on both the breathing and the transformation of pain to compassion, and many times the intensity of feeling was so great, it overtook any of my efforts. But now and then, I felt some relief from my emotional agony and also felt this remarkable connection with the people at the airport who were also lying there, perhaps facing even more despair. “My” suffering and “their” suffering began to blur and merge until they were indistinguishable from each other. I felt we were in the same room, doing the best we could and somehow, that felt comforting; I wasn’t all alone with my desperate thoughts and feelings. I also had the sense when I felt this connection strongly, and felt the depth of my compassion, that I was somehow enabling them to cope and open to this tenderness, as well. Although I still managed only a little sleep that night, something in me had changed and softened, and this had to do with my ability to meet such difficulty with the depth of tenderness it needed in order to transform.

I have noticed after many years of practicing tonglen, how it sparks in me, not just spontaneous responses like the above, but active ones as well. As an example of this, one day I went to a local store to pick up some items and saw the husband of a woman who had worked there for years, had suddenly died of a heart attack. Because I live in a small town, I knew that they had been childhood sweethearts and had been together for probably forty years or more. I imagined his suffering was great. In the past, prior to doing tonglen, probably because I had no real connection with this man, except a passing nod of recognition in the store from time-to-time, I most likely would’ve tried to avoid him, feeling awkward in his presence, because of his pain. Instead, I felt a confidence arise in me and I approached him. I looked into his eyes and spoke from my heart about his loss and even reached out with my hand. He immediately took my hand in his and spoke from his heart. I felt a true connection in that moment, and when I left, I felt something important had taken place between us, even though (or maybe, because) we were practically strangers. I believe my practice gave me the confidence to reach out and take action, which only deepened my sitting practice all the more.

This story speaks to the idea of compassion in action. We may question whether doing tonglen meditation is enough – is it really bringing about any change, except within us? Shouldn’t we be doing something more to affect change? As with loving kindness meditation, we may never know the effect we have on another, although I certainly believe there can be one. When you think about it, the same holds true for actions. We may never know how a kind word we say may affect another. Just as we may never end up telling a teacher how they changed the course of our life, others may never tell us how our efforts have impacted them. I do believe however, if we are moved to do something for another, and it’s in our capacity to do so, we might as well act on those impulses. A word of caution here; make sure you’re not acting from a place of guilt or martyred sense of duty. That’s not true compassion. In other words, if you offer your cousin a place to stay indefinitely, and then resent him, neither of you is truly benefiting from this act. As people with chronic health challenges, we particularly need to make sure our energy isn’t drained, as it can take a toll on our bodies. Sometimes we may be moved to do something for ourselves on the physical plane, like reaching out for support, or seeing a new practitioner, but even if “all” we do is self-tonglen, we are doing something very powerful. By changing our inner world, we create meaning in our lives that may not have been there before.

However we practice tonglen, whether for ourselves or others, whether in a formal practice or in spontaneous fashion, not only do we find a purpose for our suffering by developing and strengthening our capacity for compassion and empathy, but we uncover our true nature, which includes this aching tenderness and with it an awareness of the preciousness of life itself. In this way, our lives are infused with meaning.

Synapses and a Few Words More

         Tonglen: breathe in suffering, allowing it to dissolve in the heart of compassion

Breathe out compassion, peace, and tenderness. Start with self, then a loved one, a neutral person, someone (s) you’re at odds with, all of the above, your town state, country, world

Consider this: true compassion leads to true happiness and the awareness of our true nature.

Consider this: we can only begin to relieve our suffering by knowing it intimately, not ignoring it.

“Compassion practice is daring. It involves learning to relax and allowing ourselves to move gently towards what scares us. The trick to doing this is to stay with emotional distress without tightening into aversion; to let fear soften us rather than harden into resistance.” ~ Pema Chodron

Grand Mal

1.

For one second before I seize

I can feel it approach

like a hawk encircling its prey

with one exacting purpose.

At the same time

I am overtaken by an animal terror

for my body knows of what’s to come.

The hawk, with skillful acuity

dives in for the kill

and as I leave my body,

forced out by fright,

it grabs me with its talons,

attacks me with its beak

and strips me of muscle, thought,

bone, fur, awareness.

2.

A few minutes later I return

to my shaking animal body

discarded by the hawk

rejected by death

and knowing only terror.

Restless and raw,

groundless and homeless,

pieces of fur and bone

lie scattered amongst fragmented thoughts.

3.

Slowly,

bit by bit,

piece by piece,

every muscle spent

every neuron used up,

I put myself back together:

tendon to bone to flesh

to thought to awareness,

memory by memory,

I begin to recognize

who this self is.

I tremble and cry

at once overcome

with the horror and wonder

that is life.

Envy

A Climb at Hongshou

I am seriously envious. My sister just came back from China. She went to a huge Chinese wedding. She climbed a mountain that looks just like the pictures you see; swirling fog at the base of the mountain, steep inclines, wild orchids growing on the side of the cliff. She hiked the Great Wall. She ate exotic foods and met all kinds of people. My sister is 52 but has the energy of a 20-year-old. She lives in Massachusetts and in five days will fly out here to California for 5 days!

I’m bright green with envy. Glowing. You can see me from miles away. I want to travel too. And often. And go just about anywhere. She sounded upbeat and as full of enthusiasm as a puppy. I told her “I wish I had about 1/3 of your energy!”.

I grew up in a family where travel was our middle name. We lived in California 9 months out of the year and 3 months on the east coast. Before I had problems with seizures and severe sleep deprivation, we went to Europe: Denmark, France, Italy, Greece. I went to Jamaica with my parents and Trinidad and Tobago. Guatemala and Honduras. Traveling is in my blood. And now? Now I don’t drive outside of my hometown. If I go anywhere else, I have to have a caregiver take me, and then usually for a doctor’s appointment a half-hour away. I did manage a trip back east last year with two caregivers, but it was brutal getting there: I felt like I had to slay a few dragons to get there.

In my fantasies, I’d like to live back east part of the year. I’d like to travel to Asia – Bhutan maybe? Thailand, Nepal? I’d like to go to Africa, too, but I’m not sure which country. Europe: pick a country, any country. I’d like to go to Alaska and see the Denali National Park. I’d like to go to Nova Scotia – just ‘cause. Costa Rica for sure. Australia and The Great Barrier Reef. Tahiti. The Caribbean. I want to see the Taj Mahal. Machu Pichu. Findhorn. Stonehenge. Victoria Falls. I’d like to hike, swim, zipline, snorkel, scuba, snowboard, hang glide, surf and kite surf.

So… I’m just a tad envious.

Which brings me to the topic of complaining. As someone with chronic illness, I feel like I’m not supposed to complain too much. There are always others worse off than me. So, I should be grateful for what I can do. As a society we love the “super crip”- the differently abled people who not only never complain but are able to do extraordinary things. Someone without legs managing to run a marathon with prosthetics. Someone who is blind who climbed a mountain. Someone who has Crohn’s disease becomes a medical doctor. These are all commendable achievements to be sure, but what about the rest of us who don’t accomplish such feats?

Personally, I think for most of us, it’s a feat just to make it through the day. For someone who suffers from depression to get out of bed. Another to walk from the bedroom to the living room. To get through one more day of pain without thoughts of suicide. To be able to balance a check book, make a meal, sweep the floor. Hold down a job.

In the middle of writing this, I took a break and walked outside. It’s been raining lately, and everything is so green. There’s the dark green of the pine trees that line the driveway, the ends of which are lighter from new growth. Cattails below the house shimmer a soft green that sometimes darkens when clouds pass by. The tall grass in the meadow is a shiny lime green. Green is a beautiful color with so many shades.

So, are there various shades of human emotion: fear, irritation, rage, excitement, sadness, and yes, envy? It’s human to have and feel emotions. To get stuck in them and have them eat a hole in your stomach or heart is something we want to avoid.

When I came back from my short walk, I felt something inside shift. I sat down and listened to the rain that started falling – a beautiful sound. I glanced at my cats who were sleeping peacefully. And I sat with my envy, green and glowing. It’s a beautiful thing too! A human thing.

And so, when my sister comes to visit, I will hug her hard, and squeeze her hands, and ask her more details about her adventures and look at her pictures on her iPhone. And I will be happy for her. And I will be grateful I have a sister who I love and loves me back.

And I will probably bring with me a touch of green envy. Emerald? Perhaps ivy? I’ll decide then.

To Be Honest

 

When I started my “book” many years ago, I offered things I know like meditation techniques which were and are helpful for me, and I hoped, kind of for others.  And I guess I’ll include those kinds of things in my blog in the future.  But I feel there’s a tone sometimes in the “book” which makes it sound like I have all the answers.  I don’t.  I have been living with chronic illness for about 50 years, so I certainly have experience of which I’m willing to share.  But ultimately, we all have to find our own way. 

I don’t like spiritual or self-help books by people who think they have all the answers. It puts me off and makes me feel insecure somehow.  I especially don’t like books by doctors or professionals that act like they know what you should do.  There’s often good advice there to be sure, but they don’t know what it’s like to be chronically ill.  Only we do.

So, I want to be really honest with this blog.  I want to share my experiences and what has been helpful for me, in hopes it could be helpful to you.  But there are no guarantees.

And now I’m going to jump into another topic: Death.  How’s that for a topic?  I think death feels more intimate when you suffer from chronic illness.  It hangs out with you while you watch TV or garden or pet your cat, or when you eat Cheerios in the morning (or at midnight).  Sometimes this feels scary and sometimes it feels like a gift.  Sometimes we think of suicide, or at least I do.  But I suspect I’m not the only one out there that does.  But I also feel more connected with my body because I’m constantly needing to tune into it and attend to it.  There’s an understanding too, by seeing how my body responds when, for example, I’m anxious, that it’s easy to see how the body deteriorates.  I have developed an ulcer because of the many years of this intense anxiety.  It doesn’t take much of a stretch of imagination to see how the body will eventually break down altogether.  Maybe some of this understanding comes with age – I’m 64.  But I think I’m more aware of death than other 64-year olds who have had little or no health problems.  I look up from writing and see my cat Zoe washing herself methodically and my heart feels a soreness that is painful yet beautiful.  I think if I took life for granted, I wouldn’t experience this so poignantly.  I really do.  So, in a way, awareness of death is a gift.  So is chronic illness.  And yet, if I’m honest, it doesn’t always feel that way. 

Excerpt from My “Book”

MEMORY:  THE JOURNEY BEGINS

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.