Book Excerpt “I Am…”

The following is an excerpt from I Am, I Am, I Am – Seventeen Brushes with Death – a Memoir by Maggie O’Farrell. She had many brushes with death and this excerpt is about her recovery from encephalitis. Her description of recuperation is brilliant.

“Writing about this is hard, not in the sense that it is a difficult time for me to revisit. It’s not that it’s unwieldy or painful material to think about or mould into sentences and paragraphs. It’s more that the time I spent in hospital is the hinge on which my childhood swung. Until that morning I woke up with a headache, I was one person, and after it, I was quite another. No more bolting along pavements for me, no more running away from home, no more running at all. I could never go back to the self I was before and I have no sense of who I might have been if I hadn’t contracted encephalitis as a young child.

The experiences you live through while gravely ill take on a near-mystical quality. Fever, pain, medicine, immobility: all these things give you both clarity and also distance, depending on which is riding in the ascendant.

I recall my encephalitis, in its most acute phase, in flashes, in staccato bursts, in isolated scenes. Some things are as raw and immediate as the moment they happened; these, I can inhabit as myself, in the first person, in the present tense, if you like. Others I have almost to force myself to confront and I watch them as I might a film: there is a child in a hospital bed, in a wheelchair, on an operating table; there is a child who cannot move. How can that child ever have been me?

Of its aftermath, the rehabilitation, I have a stronger sense. The coming home from hospital, the weeks and months of being at home, in bed, drifting up and down on currents of sleep, listening in on the conversations, meals, emotions, arrivals and departures of family life below. The visitors who came, bearing books and soft-toy animals and, once, a man from over the road bringing a basket of baby guinea pigs, which he let loose in my bed, their tiny, clawed, panicked pink feet skittering up and down my wasted legs.

Convalescence is a strange, removed state. Hours, days, whole weeks can slide by without your participation. You, as the convalescent, are swaddled in quiet and immobility. You are the only still thing in the house, caught in stasis, a fly in amber. You lie there on your bed like it draped stone effigy on a tomb. As the only sound you hear is that of your own body, its minutiae assumes great import, becomes magnified: the throb of your pulse, the rasp of hair shaft against the cotton weave of your pillow, the shifting of your limbs beneath the weight of blankets, the watery occlusion when eyelid meets eyelid, the sylvan susurration of air leaving and entering your mouth. The mattress presses up from underneath, bearing you aloft. The drink of water waits beside your bed, tiny silvered bubbles pressing their faces to the glass. Distances that used to appear minor – from your bed to the door, the stretch of landing to the loo, the dressing-table to the window – now take on great, immeasurable length. Outside the walls, the day turns from morning to lunchtime to afternoon to evening, then back again (O’Farrell, 2005, p. 226-228).

 

 

The Interrelated Structure of Reality

“In a real sense, all of life is interrelated. All persons are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly. I can never be what I ought to be until you are what you ought to be, and you can never be what you ought to be until I am what I ought to be. This is the inter-related structure of reality.” ~ Martin Luther King, Jr.

 

 

 

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.

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

“Suchness” – As You Are

“Suchness” – As You Are

“… the most special gift
you have to offer is the
living quality of your
presence, the indescribable
spark that makes you you.
Each soul has its own
multifaceted, jewel-like
character, its own ‘suchness’.
Even though no one can
exactly pin down this
‘special something’,
it’s what people
love when they love you.
Suchness means ‘just so’.
You are just so in your way
I am just so in mine.
We are all just what we are,
and cannot be other than
what we are in the end.
This is cause for celebration”.

– John Welwood
                 
                 
 

 

 

Adaptations: Who Am I?

The following is an adapted excerpt from Ken Wilber’s adaptation of Roberto Assagioli’s version of “Who Am I?”.

            “I have a body, but I am not my body. I can see and feel my body, and what can be seen and felt is not the true Seer. My body may be tired or excited, sick or healthy, heavy or light, anxious or calm, but that has nothing to do with my inward I, the Witness. I have a body, but I am not my body.

            I have emotions, but I am not my emotions. I can feel and sense my emotions, and what can be felt and sensed is not the true Feeler. Emotions pass through me, but they do not affect my inward I, the Witness. I have emotions, but I am not emotions.

            I have thoughts, but I am not my thoughts. I can see and know my thoughts, and what can be known is not the true Knower. Thoughts come to me and thoughts leave me, but they do not affect my inward I, the Witness. I have thoughts but I am not my thoughts.

            Then affirm as concretely as you can: I am what remains, a pure center of awareness, an unmoved Witness of all these thoughts, emotions, feelings, and sensations.”

Roberto Assagioli is the “founder of Psychosynthesis” (Ken Wilber).

Adapted from “Grace and Grit: Spirituality and Healing in the Life and Death of TREYA KILLAM WILBER by Ken Wilber”, p. 125 

Essay: Who Am I?

When I was quite young, I sometimes wondered who I really was. At the time, I didn’t have words to make sense of what I even meant by this. I was called “Katie” by those who knew me. But was this who I was, really? I was the daughter of 2 people called “Lydia and “Bill”, but did that make up who I was? I had a body I walked around in, that got me from one place to another. But my body certainly wasn’t all of who I was. I had developed likes and dislikes: I hated eggs but loved root beer Popsicles. I hated school but loved reading. But those things didn’t completely define me, either.

            These questions, organized around thoughts & feelings & sensations, scared me. If I wasn’t these things, then who was I? Was I nothing at all? That thought really scared me. I knew intuitively, that the adults around me wouldn’t know the answers to all these questions. This concerned me, because usually, adults had all the answers. And if they couldn’t answer this Big Question, then I’d have to walk around with an uneasiness without getting any resolution. I didn’t like that.

            It was not until I reached my 40’s that I realized the questions I had about having a fixed self was called “self-inquiry”. I learned this from reading books on eastern philosophy and some of my experiences meditating. When meditating, I sometimes lost my usual sense of self. Gone was my hold on my identity with my body and mind and all its expressions and projections. I understood that who I was couldn’t ever really be pinned down, but that it didn’t vanish altogether, either. This was a great revelation. It gave me a feeling of great peace and comfort.

            It still does; when anxiety becomes overwhelming, being reminded of a vaster consciousness softens my experience and makes it less frightening. Bringing space to the anxiety begins to relax the knot of tension in my solar plexus, giving the sensations there – room to move. From there, tenderness moves in. Staying with spacious awareness allows the contracted body (in this case, what I’ve labeled “anxiety”) to relax and feel held.

            In writing all this (which took some time), I really had to reflect on all that this brought up for me. So, I asked myself this question: How do I apply this to my daily life? How do I remind myself of vast awareness?

            Letting that idea float in my mind, I put my pen down for a moment and decided to do some yoga. My back has been bothering me for a while, so when I started doing the poses, I paid close attention to those places that felt tense. Ah – I thought – contraction. Yoga places an emphasis on breath, so I breathed into those areas as I went from pose to pose. Breath… Yes – that’s a way to open the body/mind and create space to let those knotted areas have room to loosen up. After a while, some tension was released, and those constricted areas let go a little. When I ended the session in a relaxation pose, my attention was more able to take in the whole of my body, rather than just the painful part. Contraction leading to expansion.            

How about you? Did this post open you up? How did it affect you? What can you do today to bring a bigger perspective into your life – for example, the pain you experience (whether physical or emotional), that’s happening right now? Experiment. And, if comfortable, let me know what happens.

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.