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)

 

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

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.

What is Happiness?

“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” – The Dalai Lama

The other day I wrote in my blog that I was happy. I had slept well enough for me, was able to spend quality time with 3 friends and I felt like a “normie”. But that kind of happiness, although welcome, is conditional: if I’m not anxious, overly sleep-deprived or seizury, I feel happy.

Recently, I had an exchange with an old friend via email. I had noticed before that he seemed quite cynical and I suggested a book he might want to read that I found uplifting. In the exchange, I told him I wanted him to be happy. He responded that “happiness is a strange thing” and went on to say that in many ways his life was blessed. But a few years ago, his son died in a tragic accident and there were times he felt devastated and had a hard time functioning. He said that next time we talked he would try to be more upbeat.

I had to think about what I wrote. How can we be happy when a loved one has died, especially tragically? How can we be happy when our lives are diminished, when our activities are limited, when we are in pain? Is happiness even a realistic goal? And is happiness only based on outside circumstances?

I instantly wrote back to my friend that I didn’t want him to be inauthentic. I didn’t want him to pretend to be “upbeat”. What I wanted, I realized, was for him to not get stuck in bitterness, which I feared was what was happening. I’m afraid of that in myself sometimes, or that I’ll fall into a pit of despair and not be able to come out of it.

I think a deeper, more intrinsic kind of happiness is based on kindness and compassion. Suffering and hardship will come to all of us some way or another. If we hold ourselves and each other with kindness and compassion, we tap into what could be called our true nature, and that is based on not only no conditions, but is comforting and always available.

And yet, I know how hard it is to deal with an on-going illness, and how it can lead to bitterness, depression, despair, and other difficult mind states that can overwhelm us. Therefore, to get in touch with our innermost self, we need to cultivate kindness, compassion. This takes practice, continual practice.

This, in my opinion, is what leads to true happiness. If we strive towards a happiness that is only based on outside circumstances, we are eventually going to be disappointed; for these circumstances are bound to change. But when we strive for happiness that is based on our own natural resources, we will be tap into something that can never be taken away from us.            

What do you think?

Edited to include an additional paragraph

 

How Are You?

 

For many (say 4) nights in a row I have slept pretty good, for me.  I know if others experienced these nights, would probably have something else to say.  But I’m happy with how I feel.  Wow.  Happy.  That’s a miracle to me.  I almost feel like a “normie” – what I call an able-bodied person.  And yet.  There is also a nervousness in me like I’m looking over my shoulder wondering how long this stretch will last.  Another night?  Please?  The rest of my life?  Please?  I know the last plea is highly unlikely, but I like to hold out for a miracle.

Do you ever have good days?  What do they look like?  Do you get nervous about another shoe dropping like me?

So today I’ll have a “good” day I imagine.  I’ll be more active.  I won’t feel this pressure to act “normal” around others like I usually feel.

Which brings be to this topic: “how are you?”  I’ve come to hate that question.  It makes me feel squirmy.  And sometimes resentful.  Do people really want to know the answer.  Sometimes I bump into others at the local natural food store, people I don’t know really well, but well enough to stop my cart and say hi.  And as usual they ask, “How are you?”.  Sometimes, because I just don’t feel like getting into it, I’ll say “fine” – it’s easier that way.  Sometimes I’ll just shrug my shoulders and make a face which translates into “not so good”.  Sometimes I’ll be bold and say “shitty”.  Sometimes I’ll say, “Right now, I’m good”, which really means “I’m doing my best to stay present because I know when we do everything is pretty much ok that way.” 

But mostly, unless it’s a good friend, I won’t get into the details.  I don’t think most people really want to know the details. They don’t want to know I’ve been awake most of the night and that anxiety, dread and self-hate took over.

I have a good story about this kind of thing though.  Once I was in Safeway and saw a woman from afar, I knew (not well) who had cancer and was going through treatment.  Our eyes met and after that you can’t pretend you didn’t see each other.  So, I waved and smiled and proceeded to push my cart up to her and she shook her head vehemently and turned away.  I received her message loud and clear, that she did not want to interact whatsoever.  I didn’t take it at all personally.  I understood.  And I appreciated her honesty.  Perhaps next time someone I don’t know well asks me how I’m doing and it’s a difficult day for me, I can be just as honest and say something like, “Not well.  And I don’t want to talk about it.  And I don’t want to know how you’re doing because I’m too tired to listen to your story, whatever it is.  I can’t be polite.”  And then walk away. 

What do you think?

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.