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).

 

 

Another Conversation with Dieuwke

Dieuwke, one of my nighttime caregivers, settles herself in the rocker next to my bed, as I sit up and pull the covers up around me. She tells me about her lunch date with her friend. I always like hearing her stories and look forward to them.

“She had this insight about herself”, Dieuwke says smiling. “She realizes she’s pretty tuned into the broader aspects of reality”, she spreads her arms out wide. “She meditates regularly for long periods of time, she can have all these revelations, and can be quite psychic. But the practical things in life, she’s not so good at”. She pauses and rearranges the blanket around her knees.

“You know, it’s funny – I was just thinking about the same sort of thing just today”, I start.

“How so”?

It seems to me that there are 2 realities going on at the same time. There’s this boundless dimension of reality you could say, and then there’s this concentrated, detailed reality. It’s hard for me to put into words”.

Dieuwke nods and looks at me intently as I sit up straighter.

I continue, “I can relate to your friend. I meditate, contemplate, I ponder about the Big Questions in life, but I have a harder time focusing on getting things done, even when I’m feeling ok”. I laugh “I can get these great ideas about what I want to write about in my blog and jot them down. But then the work of it is harder for me – the writing and re-writing, the editing. I’m not as fond of that as I am about the initial idea. I have to get my head out of the clouds and my feet on the ground”. I look at Dieuwke, who has a slight smirk on her face. She knows this about me already. She looks like she’s about to speak, but I put up my hand to stop her. “Wait a minute. There’s more”. Dieuwke raises her eyebrows.

I go on. “How does this understanding of the vastness of being help when we’re in the middle of great difficulty? When we feel like we can’t go on? When the pain, whether it’s emotional or physical, is just too much? For that matter, how does that kind of awareness help when we’re organizing our closet, cleaning out the fridge, or other kinds of chores”? I pause again. “I’ve been thinking awareness is kind of like a Maglite”.

“A Maglite”?, says Dieuwke skeptically. “Yes, a Maglite. If you twist it one way, the light becomes broad, like the vastness of the universe, but you can’t see the particulars around you. If you twist it the other way, you can’t see the bigger picture. To get things done in the physical world, you have to minimize the beam”.

Dieuwke tilts her head, considering this.

I continue. “Let me give you another example: I continue, “when I drive my car, I have to focus on driving, not the wonders of the Infinite, or else… I don’t know, I’d run off the road. Or, if I have to have a difficult conversation with someone, I can’t just focus on The Realm of Unlimited Possibilities – I have to say something”.

Dieuwke nods slowly (taking this in), but I see I need to say more for her to grok what I’m talking about.

“I remember one time when I had to go to my neurologist. I knew it was not going to be an easy visit, and that I needed to talk to him about a medication I was taking, so before I went into the office, I got very centered. When he came in, he already looked cross and in a hurry. I brought up how I wanted to handle my medication situation and he started to raise his voice, and even got a little angry. But, I immediately narrowed my focus – twisting the Maglite to one end, you could say – and stood my ground. I was not going to be intimidated! I was very, very tired that day and my stress level had been high or weeks, so I really had to use my energy wisely and not get distracted by his attitude, or veer off course. I didn’t back down, but I also didn’t retaliate. And although in the end we didn’t agree, and I had to go to another doctor who could better serve me, I felt good about how I handled myself. If the Maglite had been twisted the other way, I would’ve probably gotten scattered and spacey and maybe given in to how he wanted things to go down”.

Dieuwke responds, “Well… it’s like you said. The Maglite has the same power, whether you twist it this way or the other. It comes from the same source. My feeling is we have to be skillful about how we use that power. Every situation requires something different. It’s not really that there are 2 realities. There’s only one”. She nods, as if agreeing with herself. “Some people have an easier time in the physical world. Other people seem to have it easier in the unseen world. But, they’re both the same world, really – they just seem different. We all need a certain balance. Some people think that the physical world is pretty much all there is. Others pretty much dismiss the physical world, thinking it’s insignificant”.

I feel satisfied with this conversation and am starting to feel sleepy. I scooch down and get my entire body under the covers and position my pillow under my head.

“We’ve figured it all now, I’m sure of it. We finally got enlightened”, I say, and smile.

It’s about time”, Dieuwke says. We both chuckle and I close my eyes.

 

 

What do you think?                  

sunlight beaming on green trees
Photo by WARREN BLAKE on Pexels.com

            

 

Commenting on Blog Posts

A few of you have told me that you are having problems with how to comment, and I really want to hear from you.

This is how you do it:

IF you are receiving new blog posts by email and reading them on your smartphone:

Mobile:

Open the email, scroll to the bottom of the post, click on ‘comment’ – Under the post, you will (hopefully) find the ‘Share’ buttons (click your preference, if any) and the ‘Like’ button under those. Scroll further towards the bottom of the page to find the comment box in which you type your message – “Please share your comments and insight”.

OR

Open email – Near the Post title, click ’72maluma’ (it’s a link), scroll all the way down and find “View Full Site”. Click the post title, scroll to the bottom of the post where the share and like buttons will be, scroll toward the bottom until you find the message “Please share your comments and insight” and the comment box.

Desktop:

Go to: https://chronicillnessliving.blog

To share, like or comment, click “Leave a comment” located under each post. Find and click the title of the post on which you want to respond.

OR

Google search the term “chronic illness as a spiritual teacher” Click the link – results from searching today:

“Chronic Illness as a Spiritual Teacher : “Do not turn away. Keep your …

https://chronicillnessliving.blog/

The blog site opens – same instructions as above.

Please read all of the posts by 72maluma on Chronic Illness as a Spiritual Teacher and while you’re at it, please share to Facebook. Thank you!

 

Another Excerpt from the “Book” I Never Finished: Chronic Illness and PTSD

All people I know who have chronic illness challenges struggle at some point or another emotionally. There are times when our emotional suffering can overtake our physical suffering. Fear can grab a hold of us and spiral out of control, turning into anxiety or panic attacks. Thoughts turn dark and the spiral becomes depression or despair.

We’ve already explored the difficulties one faces at the onset of our illness; loss and the fears that often go hand-in-hand with it (refer to my previous post of April 8, 2019 Excerpt from My “Book” “Introduction and Initiation to Loss”). But, there are other scenarios that can cause difficult emotional responses, making it hard to maintain our equilibrium. One might be that we’ll go through a period of time when our symptoms are minimal and we have more choices available to us, our life opens up again. We might start to make plans, we may think we can get our career back on track. We may even believe that we are restored to perfect health, never to deal with the illness again. Then gradually, or perhaps suddenly, something shifts again, and we take a turn for the worse. It’s easy to see that these sets of circumstances could trigger our old fears of isolation and dysfunction or launch us into depression.

But sometimes, even if we’re doing okay physically, intense, dark emotions seem to rise out of nowhere and we are carried away by despair, hopelessness or dread. What’s going on here and what can be done to ease our minds and hearts in all types of scenarios?

First of all, it’s important to understand that because of the intricate relationship among them, when the body is in a weakened state, so is the mind and therefore, the emotions, creating an atmosphere that most of us find very challenging. I notice this with able-bodied people as well and more clearly, when they get something like the flu. At first, they’re unperturbed, and take remedies or pills and rest, knowing it will pass. But then, as the days go by and they realize this particular strain of flu might go on for a few days, they become grumpy. But then, if the flu goes on for weeks and the symptoms are difficult; high fever or stomach cramps, accompanied by sore muscles, for example, their usual cheery and determined disposition changes. They become a little nervous: When’s this going to end? They exhibit insecurity and question their significant other: Do you still love me? As people dealing with chronic illness, our challenge is on-going, which includes our emotional and mental reactions to our ill health, as well.

Secondly, it’s important to understand that some of the emotional and mental challenges that arise for people with chronic illness can be symptoms of Post Traumatic Stress Disorder. This understanding took me years to realize. It wasn’t until I saw a tv program about a Vietnam vet with PTSD, that I recognized myself – a lot of his symptoms were similar to mine: insomnia (although I believe mine is partially due to my neurological makeup), hypervigilance (for me, during the night: what if I have a seizure?) and occasional panic attacks (heart pounding, stomach in knots, persistent anxious thoughts). To come to the understanding that I have PTSD, was an enormous revelation for me and extremely validating.

In the past, when I exhibited these symptoms, I felt a certain shame with it: Why am I so weak-minded? Why can’t I sleep like everyone else? Why am I so fearful? Now I had a name and a reason for these particular reactions, which made me feel better about myself and therefore, more compassionate. I understood that for me, having grand mal seizures are traumatic, and that even though it’s been 20 years since I last had one, the fear of grand mal seizures is still great.

Because of this understanding, I could become kinder to myself and admit, with less shame (I’m still a work in progress), that I needed help. So, I hired caregivers. This way, at night, for example, when my anxiety becomes too much for me, when depression enters the room once again, I don’t feel like I have to “power through” – I can get up, wake up my caregiver and we can talk, have a cup of tea, and I can calm down more, and maybe even laugh!

Here are some of the classic symptoms of PTSD:

Emotional expressions

irritability, angry outbursts, guilt, shame, despair, disgust, anxiety, panic, nervousness, sadness, loss, depression, and overwhelm

Overall symptoms

sleep disturbances, hypervigilance, difficulty at work, impulsive destructive behavior, problems with concentration, strained relationships, changes in personality, loss of identity and sense of purpose

Physical symptoms of PTSD

headaches, colitis, and respiratory issues, ulcers

Of course, some of these things could be attributed to other causes, as well. It’s probably best to talk with a practitioner who is familiar with PTSD in people who are chronically ill, but if you have some of these symptoms and something resonates in you that their cause is PTSD, then I’d say chances are you are right.

As people living with chronic illness, we can feel we no longer trust our bodies, that they aren’t safe or reliable. This feeling affects the very core of our being. We feel unprotected. We live with the fear of a recurrence of our worst symptoms. We sometimes feel unsupported and misunderstood by our friends, family and doctors who think it’s all in our head, or that we aren’t trying enough to get well. This can further compound our doubts, fears and shame about our innermost selves and cause further isolation from community and society at large. Our financial position may change drastically, which affects us on a core survival level: How will we pay for any medical help? All this can be very traumatic and shouldn’t be minimized.

A direct quote from Counseling and Psychotherapy reads:

“A recent study showed that people whose worst event was a life event such as chronic illness, had more PTSD symptoms on average, than people whose worst life event was typically traumatic, such as an accident or disaster”. I feel the truth of this statement in my bones and I believe the reason for this truth is that our trauma is on-going, not a one-time occurrence.

According to studies, treatment for PTSD is multi-faceted, using a combination of education, medication, and therapies to address the effects. This is certainly true for me. In order for me to have any hope of even a fair night’s sleep, with my psychological and neurological makeup, I need a combination of hypnosis techniques, emotional support, medication and remedies. If you think you suffer from PTSD, it’s probably best to tell your practitioners (ones that understand this phenomenon) to get the help you need. It may take experimentation to figure out what works best for you, and what might make the best combination of therapies, support, medication and/or remedies. Understand that you may not ever “get over” the feeling of being traumatized but can look towards improving the quality of your life.

Movie Review

Movie: Away from Her – synopsis by Google Search

“Long married, Fiona (Julie Christie) and Grant (Gordon Pinsent) find their mutual devotion tested by her struggle with Alzheimer’s disease. When it becomes apparent that the condition is worsening, she checks into a rest home. Grant visits her a month later and finds that his wife has grown close to Aubrey (Michael Murphy), a fellow resident. Jealous and hurt, Grant finally seeks help from Aubrey’s wife (Olympia Dukakis) when Fiona suffers a crisis.

Release date: May 4, 2007 (USA), Director: Sarah Polley, Screenplay: Sarah Polley”, and David Wharnsby, editor

My observance: Julie Christie is extraordinary in this role. You can almost see the deterioration of the disease by the expressions on her face as her memories slip and slide away from her. Great acting

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

Love Matters

One day, my caregiver drives me to Ukiah – a half hour away – to go to the Social Security office. I anticipate a long wait, as I don’t have an appointment, but we get there early and only have to wait 15 minutes. When I go to the window to talk with someone, our exchange is even more brief.

I had planned to have lunch afterwards, but it is too early for that, and I don’t feel like going home. It occurs to me that I could visit Josephine, who has dementia and lives in one of the facilities in town. I tell my caregiver my idea and off we go.

I haven’t seen Josephine in a long time. I first met her in Massachusetts when I was 13 years old, about 50 years ago. She is the mother of my first boyfriend, Mark, who, long story short, ended up living with me and my family until he graduated high school. When Mark and I broke up a few years later, I ended up renting an apartment from her back east for a short time. Our families have interacted with each other over the years: Josephine bought land in the tiny town of Elk, CA, where my parents moved to, and Elizabeth, her daughter, moved there once a house was built. Josephine continued to live back east, but she came to visit Elizabeth often, and, while there, saw my parents too, and sometimes I’d make an appearance during these visits. Mark and I stayed in contact over the years and he would occasionally call my dad, whom he had made a strong connection with while living with us.

When my caregiver and I arrive at the facility, I start having doubts: Will she remember me? Why am I doing this?

Putting these questions aside, I go up to the front desk and ask the woman behind it if I can see Josephine Mitchell. She lets me know she’s in the middle of an exercise class, but it would probably be okay if she came out for a visit.

While I am waiting, I look around: The lobby looks clean and spacious, but what about the rest of the building? Does she share a room with others, and if so, how many? I don’t think Josephine had a lot of money, so I don’t know what she can afford.

In the midst of these thoughts she shows up in the hallway that leads to the lobby. I’m surprised at how young she looks. She doesn’t appear much older than the last time I saw her – probably 15 years ago. I approach her tentatively, not knowing how this is going to go. I have never been in this situation before and I don’t know how to act.

As I get nearer, I notice that, although physically she looks the same, there is something in her manner. Josephine always seemed sure of herself, confident and outspoken. Instead, the woman before me looks a little lost, a little frightened and as awkward as I feel. She has a small, uncertain smile on her face, which makes her seem young, almost innocent.

“Do you know who I am?”, I ask.

She shakes her head.

I explain my relationship with her, mentioning her son’s name. When all I get is a blank look, I add a little more: where we met, that I know her daughter, as well. But I can tell this doesn’t trigger any memories at all.

“Well”, I say, feeling foolish, “can I give you a hug”?

She shrugs and then gives a little nod as if to say, “I don’t have any idea who you are, but you seem like a nice person, so why not”?

And so, I give her a gentle hug and then we just stand there looking at each other, both of us unsure what to do next.

“Well, I guess you might as well go back to your class. It was great to see you”, I say, lamely.

When I leave, I continue to feel foolish. What was I thinking coming here? It meant nothing to her.

But, as the day wore on, I realized it meant something to me. I gave myself the gift of respecting my own memories that are still with me, as she edges towards death, leaving hers behind. Those memories connect me to an impressionable and precious time in my life that left a positive imprint, which compelled me to reach out to Josephine.

Memories link us together. When we think of someone in some significant way, it is our memories of them and what they stand for that causes us to act or feel a particular way. Somewhere deep inside of us, we sense that this interconnection leads to interdependence for all of us. Simply said – we need each other to survive and thrive.

It was also a good lesson for me to be on the other side of things. I thought that because of my own experiences of loss of memory after seizures, I would know exactly what to say and how to act with Josephine. But I didn’t. It was humbling. And it also gave me insight into what my caregivers, friends, and family sometimes go through when they struggle with how to be with me when I am feeling seizury or extremely sleep deprived or anxious. I now know how they felt.

Love isn’t always straightforward.

Relating to others can be awkward or confusing. We will sometimes feel foolish in our interactions.

But, that doesn’t matter. What matters is that we try. What matters is that we show up in difficult times. What matters is that to the best of our ability, we say and do things that add up to “I love you and I care”. What matters is that we don’t give up on ourselves and each other. We are all fools for love at some point or another; hopefully often.

Love matters.

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.

 

 

 

My Offer to You

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An excerpt from my poem “Savior

… “a small bird whose body

I could not see, saved me.

I sat in my recliner

with all my complaints,

when this tiny chirp

burst into the air.”…

 

Excerpts from my poem “Breakthrough

…”go through this messy and blessed life

thinking we can clean it up

and make it orderly”…

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

But there is one thing we can do

when grief sails by”…