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 louse 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.

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