Faith

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.

Blind Faith

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

Losing Faith

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.

Prism

Refracted light is like the human soul –

it can never know its full capacity.

We come to this earth plane

again, and again

seeking wholeness,

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.

~ Maluma

 

Citations:

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:

https://www.pocketmindfulness.com/6-mindfulness-exercises-you-can-try-today/

https://psychcentral.com/blog/1-minute-mindfulness-exercises/

https://www.headspace.com/meditation/body-scan

https://www.headspace.com/meditation/sleep

https://blog.mindvalley.com/best-guided-meditations/

 

I Said I Would be Honest

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

SLEEP!!!

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.

~Maluma

 

Cari

Cari Looking to the Right (2)

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

squinting.

“Oh. Migraine”, I say, keeping my

words to a minimum.

She sighs. “Yup”.

“Again”.

“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:

 

My Rock

 

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

stained glass

the light singing through

all of the colors

not leaving even one of them out.

Cari and Maluma Peaceful (2)

 

A Family Inheritance

Anxiety runs in my family.  I inherited mine from my father.

My mother often told the story of when my father first began his teaching career.  Every morning before work he would vomit from nerves.  Eventually he got this down to every Monday, and then when he became more confident at his job, he stopped.  Every time my brother and I were told this story, we would laugh, including my mother.  We didn’t understand.

He couldn’t stand being late.  When we would travel, he’d pack days ahead of time.  When going to the airport, we would have to arrive hours ahead of schedule, or he would get upset, often yelling at us.  His fear of being late carried over to other events when promptness was not called for – for example when going for an outing, he’d announce to the family what time we would “need” to leave, only to blow up when we weren’t ready a half an hour before the scheduled time.

His anxiety took the form of hypochondria.  If he got a headache or a slight fever, he’d worry about it as if he had some strange or daunting illness, asking my mother repeatedly to feel his forehead or listen to his heartbeat.  She’d roll her eyes and say, “You just have the flu for God’s sake!  You’re not dying!”  But by the look on his face, I could see he was frightened.

At restaurants, much to my family’s chagrin, he’d become agitated, running his hands through his hair repeatedly, waiting for dinner to arrive, long before it could possibly be ready.  He would flag down a server and ask them when our meals would be ready, his voice sounding a little desperate, while the rest of us hid behind our menus.

As he got older, his anxiety increased, along with his controlling behavior.  Once while I was visiting with my partner, his car was in the shop and was supposed to be ready early afternoon, but he got a call informing him that they ran into a snag and the car wouldn’t be ready until much later.  He exploded and berated the receptionist on the other end who was only relaying the news.  There was really no rational reason for him to be upset, he didn’t need to go anywhere that day, and, if that need changed, my partner and I had a car.

My parents lived about 2 hours from me.  When returning home after visiting them, he would often call my landline long before I would arrive to see if I made it back ok, and when he found out I wasn’t there, he’d become anxious.  I think it was my last visit there before he died, that he called my house three times before I made it home.  It didn’t matter how much my partner tried to reassure him that I was probably just fine, he didn’t calm down until he heard my voice.

It took me a long time to recognize that these behaviors were coming from a place of anxiety, especially when he acted controlling, impatient and angry.  It wasn’t until I began to analyze and compare my own feelings and behavior with his and recognize that they too stemmed from anxiety that I began to understand more fully his experience.  Although I try not to manipulate and control those around me like my father did, there are situations where I have to have things a certain way or I become very anxious.  There is a felt sense of great urgency when anxiety takes over, especially in triggering or stressful situations, and for me that happens most at bedtime.  I have to be in my bedroom at 9 and if my partner begins a conversation at 8:50, I get impatient and irritated with her because of this urgency.  I need to check and re-check to see if the front door is locked, the stove is turned off, and the cats have enough food and water before I turn in, or my stomach goes into knots.

I want to say here; I loved my father very much.  He was much more than his anxiety disorder and I hope the following poem I wrote 3 months before his death demonstrates that.

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.

Life as a Crip

I wrote the following as a writing exercise, and ended up liking it. I realized, too, that it is based very loosely on my partner, who deals with chronic pain.

Life would be much easier if I were a cartoon character. Let me explain: I’ve been disabled ever since a car accident in 1972. A drunk driver slammed into me, and I haven’t been the same since. My right leg got crushed and I have to walk with a cane. I’m always in pain. Plus, I ended up with some brain damage, (my girlfriend Ellie teases me – friendly like, that I’m not right in the head) so I can’t carry on long conversations or I get overwhelmed, and my memory is for shit. So, I’ve more or less become a hermit. People tire me.

I spend most of my time watching cartoons and sometimes I get so involved, I think I’m part of the show. I like Sponge Bob a lot – but mostly, I like the old ones, like the Flintstones or The Jetsons. So, if I were a cartoon character, I wouldn’t feel like I had to fit in the way people expect you to. I could go beneath the sea like Sponge Bob, or soar through space in my space mobile, like George Jetson.

Of course, I like all those super heroes too, because they can do whatever they want, whenever they want, and people look up to them. They can save the day instead of waiting around to be saved. Ellie asked me once if I could have one super power, what would it be. I didn’t have to think about it – I’d have the power to be invisible. That way, nobody would bother me, and I wouldn’t have to answer to no one. Ellie told me she thought I’d say being able to fly, and I could see her point. If I could fly, I wouldn’t have to drag this shriveled old leg around anymore.

Ellie is the only person I want to have anything to do with. She seems to know when to leave me alone (which is most of the time), and when to hang out with me. She puts up with the TV and my cartoons, she laughs at my stupid jokes, and sometimes, I actually think she enjoys my company.

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.