Pain Entrusted to Us

Sufi Master Pir Vilayat Inayat Khan advised his students about the pain we all have and carry with us and share through life.

Not directly-quoted, as there are many versions from various sources:

Overcome any bitterness…                                                                             

because you were not up to the                                                     

magnitude of the pain                                                                       

entrusted to you.

Like the mother of the world who carries the pain of the world in her heart,

you are sharing in the totality of this pain                         

and are called upon to meet it

in compassion and joy

instead of self-pity.

 

 

 

Hope – Excerpt from the Book I Never Finished

As people dealing with the ongoing struggle with our bodies, hope is a quality that is sure to enter our life at one point or another. When we wake up to the too-familiar pain in our joints or the weakness in our heart, or whatever is still waiting for us, it is easy to touch or give into fear, despair or bitterness. Hope is a wish that arises from the heart and offers us a chance at something better and keeps us going. Hope reminds us we often do not know the outcome of our illness, that science and technology are always expanding, that there are so many alternatives out there still to try. Hope whispers to us of all sorts of possibilities, and that whisper propels us forward and encourages us to not give up.

That being said, my own relationship with hope is not always an easy one. There have been times when I’ve lost hope, when I’ve given up hope, when I’ve clung to it. There’ve been times when it seems to me that to have any kind of hope that my health would ever change for the better was a dangerous tactic to take, as it could become a set-up for disappointment and then a plunge into dark emotions.

It is a good idea to look at our own relationship with hope and ask ourselves a few questions: What are we hoping for, exactly? A cure? A healing? An improved condition? A full recovery? Should our hope be “realistic” – whatever that is? Should we let go of hope altogether, because it creates a striving in the heart that just perpetuates more suffering? Perhaps if we’re to hope for anything, we should hope for an open heart to our on-going experience… but if that’s all we hope for, does it shut us down to any physical change?

At the onset of our illness, before we understand that it is a chronic condition, most of us hope for a full recovery or cure. Let’s be honest. We want our bodies to function as well as they did before we got sick. We miss how active our lives were and we yearn to “get back into the game”. But, as time goes by and we try various treatments and practitioners, we start to see that maybe a cure isn’t in the cards for us. We begin to see that yearning for such a thing takes us out of our life and away from the possibility of experiencing any happiness with things as they are right here and now. As we listen to our body’s needs and stories with compassionate awareness, we realize what we’ve been longing for all along is a healing and that healing is a wholeness that includes everything we experience as a human being: our bodies, our stories about our bodies, our fears, desires, our ups and downs, etc. This kind of healing doesn’t mean our bodies will suddenly be cured. “Healing” and “curing” in this case, mean two different things.

It can take us a while before we come to this conclusion. We begin by exploring beneath the surface of hope where there is often fear, loss and sometimes, desperation lurking. Having the courage to meet these powerful emotions from the soft places in our heart, encourages us to cultivate a kind of hope that buoys us, rather than feeds our fears of never getting well. Through the lens of this sort of exploration, we move into the spaciousness that allows the ultimate hope, the ultimate healing: We come into alignment with our innermost essence, from which all possible outcomes are born. This kind of open hope moves us away from a fear-based one that clutches at one particular outcome. Sharon Salzberg, Buddhist teacher and author, calls this “fixated hope”. She writes: “Fixated hope”…. like hope itself, resembles faith in that both sparkle with a sense of possibility. But, fixated hope is conditional, circumscribing happiness to getting what we want… when our hope for relief from suffering is based only on getting what we want, in the precise way we want it, we bind hope to fear, rather than to faith.”

“Buddhism regards fixated hope and fear as two sides to the same coin. When we hope for a particular outcome to arise or a desire to be met, we invariably fear it won’t happen. Thus, we move from hope to fear to hope from fear in an endless loop.”

I understand that loop intimately. And I understand another kind of hope; one that takes us out of that loop and inspires us to move forward. Some years ago, I had to detox from an antidepressant I had been taking for sleep, because it no longer worked for me. The process had left me anxious and fragile and my sleep worse than ever. On top of that, I had lost hope and became despairing that anything could help me as I had tried so many different remedies and medications – some of which worked for a while and then at some point, my body would habituate to it and no longer be of any help. This kind of process was a long and difficult one – one I’ve repeated again and again – first lifting my hopes, just to have them dashed again. The fragile physical state I was in at this point, deeply affected my emotional and mental states, and not only that, the specialist I had been seeing inferred that he had run out of things to try with me. What was I to do? Seek out yet another doctor? Find a new practitioner? I felt completely overwhelmed and was in a state of great anguish. As I often do when in dire straits and can’t see my way out, I called on people from my support system. One night a good friend came over to help out and when I told her all of my fears (what if there was nothing out there for me and I’d have to live this way for the rest of my life), she gently reminded me none of us knew what was around the corner, that the future held all kinds of possibilities beyond our knowing at this time. I listened to her intently and later stood out on my deck and looked up at the dark and clouded sky. Just then, like a schmaltzy movie, the clouds parted and revealed this glowing golden moon that I hadn’t noticed before, because I had been too caught up in my own despair. In that moment, my energy shifted, and that despair left my body. And in its place, hope moved in. Soon after that, I went back to my original doctor who determined that the combination of medications I had been on might have caused a reaction in me that made my sleeping more difficult than usual.

I want to be clear here. I am not suggesting that just because I was able to shift my energy, I was able to find better solutions — there are too many variables to know why any outcome comes to pass (see my January 3, 2020 blog post Creating Your Own Reality). I am suggesting that by moving into an open hope that has no set outcome in mind, aligns us with that which will work best for us in whatever condition we find ourselves. It allows us the ability to receive a new answer, whether it be acceptance or a step in a direction we may not have considered (or noticed) before. By letting go of fear (not always an easy feat for us) we bring about a greater potential for change.

Another element we would do well to cultivate here is equanimity. Living with the ups and downs of difficult symptoms, it is easy to emotionally feel on a roller coaster as well. We’re ecstatic when our blood work comes back negative after a long struggle with cancer, only to be devastated when, six months later, those same test results come back positive. Cultivating a kind of hope that is centered in equanimity, gives us an emotional balance with which to deal with the volatility of our lives. A good example of this, is the story of the old farmer. One day his horse ran off. When his neighbors heard, they dropped by. “How awful!”, they said, hoping to comfort him. “Maybe”, was all the farmer answered. The next day, the horse came back with three wild horses in tow. This time, when the neighbors came by, they said, “What great luck!”. “Maybe”, said the farmer. The next afternoon, his son attempted to break in one of the new horses but was thrown off and broke his leg. The neighbors showed up. “I’m so sorry, what a terrible loss!”. “Maybe”, replied the old man. The following morning, two military men came by looking to draft young, able-bodied men into the Army. When they saw his son, they moved on to the next farm. The neighbors congratulated him on his good fortune. “Maybe”, said the farmer.

Maintaining a hope with this kind of equilibrium while we deal with all our physical discomforts may feel like an impossibility, but I find it a good model to look toward. After years of struggle with getting good sleep, I’ve noticed that when I stumble upon a new remedy, etc., that helps me get a decent night’s sleep, there is always something inside that asks “Will this last?”. It so far never has. I have learned to develop a “maybe” attitude. Maybe it’ll be this way for the rest of my life, but maybe it’ll be better at times, and maybe worse. Meanwhile, whatever happens, my mental and spiritual goal is to maintain an even-keeled attitude, understanding like the farmer, that all mind states pass, eventually.

You can also practice the quality of equanimity to help you along. Just as with loving kindness meditation, you can construct phrases to meditate on (see my April and May 2019 blog posts Introduction to Loving Kindness and Loving Kindness, Part II). Jack Kornfield, Buddhist teacher and author, offers these phrases:

“May I be balanced and at peace”.                                                                                             “May I learn to see the arising and passing of all nature with equanimity and balance”.

Of course, you can create your own phrases that better reflect your circumstances.

“May I meet the arising and passing of phenomena in my body with ease and balance”.

Just like with loving kindness meditation, the more you practice, the more the phrases become a part of you instead of just wishful thinking.

In the end, I have found hope to be an essential ingredient on the spiritual path of chronic illness. Hope has come to mean for me a way of holding space for all possible positive outcomes. I make sure I leave space for miracles.

On the one end of my personal spectrum of hope, I Ieave space for the possibility of deep sleep and no seizure activity, to enough sleep to keep me functioning well enough and little seizure activity. Failing that, I hope to have an attitude and a relationship towards my health that is kind, compassionate and equanimous. Hope then, is an antidote to despair, bitterness, and a closed and fearful heart.

“When my house burned down, I gained an unobstructed view of the moonlit sky.”                                                                                                             ~ Zen Poet Mizuta Masahide

 

For more information:

Jack Kornfield (equanimity, loving kindness meditation) https://jackkornfield.com/meditation-equanimity/

Sharon Salzberg (fixated hope) Faith: Trusting Your Own Deepest Experience. Riverhead Books (2003)

 

burn burnt candle candlelight
Photo by Tucu0103 Bianca on Pexels.com

Another Excerpt from My Never-finished Book – “Creating Your Own Reality”

I am a man and I am with a few other men. We are all wearing coarse, long, brown tunics. We are in a desert-like place and there is very little vegetation. We are running away from somebody or something and are all very frightened. We want to find a place to hide, but there is nowhere to do so. I feel a strong sense of doom. Other men come upon us; they seem to come out of nowhere. There are many more of them than us. I know we are done-for. The next thing I remember is sharp, stabbing sensations through my wrists, like someone has driven something through them. The fear takes over and becomes pure, raw terror, then I feel myself spinning, spinning, spinning. I realize at some point that I am dead, which frightens me even more, if possible. I keep spinning in fear for what seems like forever. I then slowly think of how I can stop feeling so frightened. I remember love. I try to conjure up the feeling of love, which is hard to do in my state of mind, so what I do manage to summon is off the mark; a kind of caricature of love.

            Then some time elapsed, because the next thing I remember is that I am in a new body; once again, a man. I am young, probably in my twenties. I am what could be called “The Village Idiot”: I have little intelligence, but am overly affectionate in inappropriate ways, like going up to strangers and hugging them.

I wake up. I have been in a deep sleep, which is highly unusual for me. I don’t think I’ve moved all night. I understand that what I just went through is not really a dream but two past life experiences. I have no doubt about that. In fact, I can’t even call it a memory, because what happened is I somehow entered those two time periods when I was in other bodies. I am also very clear that I have a seizure disorder, in part, because of the fear and terror I experienced from when I was killed and I understand that in this life, I have the opportunity to work through that fear. I also understand that the “Village Idiot” lifetime was a result of having conjured up a cartoonish feeling of love. All these realizations enter my mind at a rapid rate, and I am completely overwhelmed.

Years Later

There was always a part of the first life that bothered me: How exactly did I die? What was that sensation in my wrists? What was going on? I have since learned that during the time of Jesus and other times throughout history, crucifixion was a common form of punishment and that stakes were put through the wrists, as well as the palms and feet. When I heard of this, I felt this is what happened to me. I was also quite sure that what had actually killed me wasn’t anything physical, but that I had died from sheer terror.

It is through this direct experience I had years ago, that I learned how it is that we can create our own reality. What is a “seizure disorder” and my tendency towards worry and anxiety during stressful situations in this lifetime can on one level be seen as the embodiment of terror that spun me out of my body so long ago. I also understand that instead of thinking that I am being punished for “bad karma” from a past life, I see it as an opportunity to work through that fear and come into the full power of my being. That experience was so powerful for me. I can never dismiss it as just a dream, but a way for me to directly experience different concepts: creating one’s own reality, karma and past lives. I am very grateful for these understandings.

However, the concept of creating our own reality is a very sensitive and complex subject; one that’s certainly worth exploring, but with care and compassion.

Recently, I’ve become aware of a resurgence of this belief; the premise of which is wherever we are in life, we’ve attracted  our set of circumstances with our thoughts, whether conscious or unconscious. From this point of view, it therefore follows that we create any illness we have. If we want perfect health, they say “All we have to do” is to uncover our negative beliefs and replace them with positive ones, focusing on good health.

While I can see the truth to this, based on my own experience, I also believe the verdict is out on just how much we can create our own reality to our liking. While it’s true that there are people who have had miraculous recoveries from their illness, due to focusing on positive awareness, there are many who have not, and I don’t think it’s due to their not trying hard enough, as sometimes is implied. It’s also true that we only use a small portion of our brain, and who knows what would be possible if we used more or all of it? Investigating our belief systems and affirming a positive outcome for our health is always worthwhile, yet I think it’s important to be unattached to the outcome of our efforts and just when they might be manifested. I have seen psychological harm occur in myself and others when, after much effort, we still remain ill. We then start to question our abilities to heal ourselves, and fear, judgement and doubt sneak in: Just what dark secrets are still lurking in our psyche? Have I tried hard enough? Am I good enough? Am I being punished for a past life? IT is difficult enough to deal with our health challenges without producing new emotional ones on top of it.

When the idea that we create our own reality first started spreading in the alternative community, it was quick to catch on and in many ways, was very beneficial. It took the focus off of the idea that all illness resulted from external forces and a new examination began. How did beliefs and emotional mind states create disharmony in the body? The mind-body connection was explored and there was a lot to uncover. One of my problems with this concept is that it became over-simplified and took over all the other ideas instead of being one of many of the influences of the body’s breakdown.

And there are many others: The environment, an accident, genetics, diet, to name a few. One could argue that there have been recoveries of the body’s health whatever the initial cause, by using techniques of the mind, but there are many people who have used the same techniques without success. We all know people who have done all the “right” things: eating healthy, exercising, meditating and examining oneself psychologically and spiritually, and still struggle with their health; just as we know people who do all the “wrong” things: smoke cigarettes, drink excessively, or have a poor diet, that have no health problems and live into their nineties. The truth of the matter is we don’t always know why some people get better and some people don’t. We are complex and multifaceted beings and what works for one person may not work for another. To declare that “disease cannot live in a body that’s in a healthy emotional state” or “you can think your way to the perfect state of health” is just not always true, and certainly not because someone is more advanced spiritually than another, as seems to be implied.

Often, the way the concept of creating your own reality is presented is that we have total and absolute control of it; in fact of anything in the universe. To me, that conjures up the image of an all-powerful God, ready to intervene in any situation and create whatever (S)He wants. From what I observe, I don’t see that we or God have that kind of power. I think a better way to explain this is that we are cocreators of reality. That is, we cocreate with that which is larger than ourselves (God or Spirit), along with being affected by our DNA, other people, societal beliefs, our environment, etc. Therefore, we can influence our reality, we can direct our energy, we can become channels, but there’s a mysterious element involved in the alchemic process of manifestation that’s beyond our complete understanding

I’d also like to state the obvious here, and that is that being in a body is a limited experience. Even if we have exemplary health all our lives, at some point, we die and shed these bodies. I believe we are spiritual beings adapting to physical form and part of what we are learning here is how to live within the confines of that form. Therefore, it also follows that what is possible to create in this physical realm is also limited.

Now, let’s investigate for a moment, those implied beliefs that our health challenges could be due to bad karma from a past life and if we just focus enough positive energy on ourselves, we could heal our bodies. Buddhist teachings state that some illnesses are due to our past lives, and how we handle these conditions will not show up until the next life. Now, this viewpoint might not always be true either, but it gives us a different perspective for a moment, doesn’t it? We don’t all heal in the body in one lifetime. In fact, my own spiritual teacher has suggested to me that the reason we have many lifetimes is that it takes us that long to integrate the many lessons we need to learn.

Another Buddhist perspective is that instead of seeing illness as bad karma from a past life, think of it as karma ripening, and therefore, something one can be grateful for, so that now we can be ready to explore the teachings that come with it and grow spiritually. This viewpoint allows us to see illness as an opportunity and a sign of evolvement, not a punishment. In this sense, we are spiritual warriors, not victims or spiritually deficient in some way. We can now shed any shame that we’ve taken on due to statements like : “Love and gratitude can dissolve any disease”, after we have diligently practiced those very attitudes and still remain ill.

I have heard it said that to maintain perfect health, one must “think perfect thoughts” —- but what does that mean, anyway, and how does one go about doing that? From my many years of meditating, I have come to see that our minds are full of all kinds of thoughts from “I wonder what I’ll eat for lunch today” to “I hope Uncle Irving doesn’t get drunk again this Thanksgiving”. Would either of those qualify as an “imperfect” thought? And, to be mindful of our thoughts and how they affect us is one thing, but to try to control them as this way of thinking suggests to me, is another thing altogether. Have you ever tried not to think certain thoughts? They just persist with a vengeance. I prefer a gentler technique, which is to watch one’s thoughts and simply allow them to be, understanding that who we are is beyond thought. We all have all kinds of voices in our minds; ones that praise, ones that criticize, ones that doubt, ones that warn, etc. My experience tells me that we are better off understanding that that’s how the mind works, instead of trying to manipulate, which only backfires on us anyway. When we allow all our voices simply to be, we develop an expansive mind; one with humor and delight: “Oh, here comes that thought about my father again!” and cultivate a sort of benevolent tolerance to whatever arises, creating a healthier approach to not only our minds, but to life itself.

The one-pointed view that we each create our own reality, besides being over-simplified, often feels cold-hearted to me – an attitude that we’re here on our own; you create your reality, I create mine, and if one of us ends up in difficult circumstances, we’ve brought it upon ourselves, and it’s up to us and only us, to bring ourselves back to some imagined state of perfection. I feel this misses the mark: It doesn’t speak to our interconnectedness, the fact that we need each other, or rely on one another. It bypasses our humanness. It doesn’t speak to the deeper questions we could be asking ourselves. Yes, it’s good to question if we have had a part in creating our illness (or any difficult situation), but let’s add other questions to the mix, like: How can I use my illness to become a better human being? How can this experience deepen my capacity to love? How can I learn to love unconditionally? How are we all interconnected? How can I tap into my innermost self?

I’ll end with a quote from Marianne Williamson’s book A Return to Love.

“Our bodies are merely blank canvases onto which we project our thoughts. Disease is loveless thinking materialized. This doesn’t mean that people who have contacted a disease thought lovelessly, while the rest of us didn’t. Great saints have contacted terminal illnesses. The lovelessness that manufactures disease is systemic; it is laced throughout racial consciousness. Which soul manifests illness is based on many factors.                                                                                                                                       Let’s say an innocent child dies of environmentally-based cancer. How was lovelessness the problem here? The loveless thinking was not necessarily in the child, but in many of us who, over the years, lived without reverence for the environment, allowing it to be polluted by toxic chemicals. The child’s physical sickness resulted, indirectly, from the sickness in someone else’s mind. Our loving thoughts affect people and situations we never dream of, and so do our mistakes. Since our minds do not stop at our brain casings – since there is no place where one mind stops and another starts – then our love touches everyone, and so does our fear.”

“In Case No One Told You Today”

“In case no one told you today”

In case no one told you today:

– You’re beautiful

– You’re loved

– You’re needed

– You’re alive for a reason

– You’re stronger than you think

– You’re gonna get through this

– I’m glad you’re alive

– Don’t give up

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Possible Author – Live Life Happy
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Victor

I arrived at this hospital yesterday. When checking in, I told them I had been feeling suicidal. Someone put me in a wheelchair and brought me up to the 4th floor: the psychiatric ward. Someone else went through my belongings and found a pair of draw-string pants and pulled out the thin, cotton strip that would cinch around my waist. Did they really think I would kill myself with that?

Then, I was shown to my room with a single bed, the only window looking out at a drab grey building. I was told someone would check in on me every fifteen minutes. Instead of this unnerving me, I felt a great sense of relief. I felt safe for the first time in what seemed a long time.

The next day, I meet the other patients. There’s Andrea, who has obviously either been here for some time, or has come here before. She shows me “the ropes”: where to do laundry, where to shower, what time meals are. She rooms with Jasmine, who appears to be about Andrea’s age and it’s clear they have formed a friendship. One time, I hear a commotion, so I poke my head out of my room. Jasmine is in a wheelchair and Andrea is pushing her hard and fast down the corridor. They are both laughing and whooping it up and I find myself smiling a much-needed smile.

Then there’s Oscar with his droopy mustache and shuffling walk, who hangs out often with the waif-looking Toby; the two of them often having private conversations.

And then there’s Henry, who is wall-eyed and Asian, whose black, untended hair stands straight up. He can’t bear to look anyone in the eye and his whole body language is apologetic. He exudes both sweetness and confusion.

Victor is the only patient I am afraid of. He exhibits that kind of behavior that you see on the street that you want to avoid. He stands in a corner and argues with someone – someone the rest of us can’t see. Sometimes his voice becomes louder, turning to rage. Because I am so very anxious, and because there often seems to be no orderlies around, my fear escalates. I wring my hands; will he become violent? Will he unleash his violence on someone here? Me, even?

The other patients and I keep our distance from him. We all, excluding Victor, gravitate to one another, forming a kind of short-term family, while he remains a loner. I don’t know about the others, but I want it to remain that way.

But on my third day here, something changes that.

We are all gathered in the community room, including Victor. We take our places – Victor in the corner arguing, the rest of us sitting around the table, loosely interacting.

The TV is on, as usual. Today, someone has put in the DVD “Ghost”, which we look up at occasionally. Then the famous scene comes on with Demi Moore at the potter’s wheel, while Patrick Swayze comes up from behind, puts his arms around her, his hand joining hers. Then the familiar song, “Unchained Melody”, by The Righteous Brothers starts up, enhancing the scene.

Suddenly, Victor stops arguing. He turns from his corner and walks towards us and looks at the screen. He listens for a second, then opens his mouth and starts singing. His voice is full. His voice is tender. His voice is full of feeling. He knows every word, and every word is pitch-perfect. His gaze, usually hard and glazed over, becomes bright and clear, his blue black face is beatific and glows with an inner light. He is angelic.

The rest of us watch him, our jaws dropping. We are transfixed. We can’t believe what is happening. We know we are experiencing some sort of miracle.

And then the song stops – and when it does, Victor’s demeanor changes, and he turns away and goes back to his corner, resuming his argument.

For a full moment, no one says anything. We are stunned into silence. For a full moment we drop our roles (and our guard) and fall into that silence.

And then the moment passes. Patrick Swayze removes his arms from Demi Moore. Andrea and Jasmine look at each other and giggle. Oscar and Toby exchange glances. I bite my nails, my nerves returning. Henry hangs his head, as if embarrassed to be alive.

∗                  ∗                  ∗                  ∗                  ∗                  ∗

Now, looking back at that incident, I realize many things. The first, most obvious realization is that music has the power to heal, if only for a few minutes. Everybody knows this, to a degree. If I’m feeling funky, I can, for example, listen to Al Green’s “Belle” and my whole mood shifts. When his beautiful, soulful voice enters the room and for some time afterwards, I feel uplifted, changed.

The second realization is that for as long as “Unchained Melody” lasted, Victor was no longer “other” – someone to be feared and avoided. For those few minutes, he became a part of our weird, dysfunctional family. He became a part of us, and we were a part of him.

For years afterwards, I thought about that incident and wondered about Victor: How did he get that way? Why was he so angry? Was it purely a “chemical imbalance”? What was his life like before he came to the hospital? Did he live on the streets? Does he now? Did he ever fall in love, have a family?

Of course, I don’t know the answers to these questions. I only know he is my brother of sorts. I know his metamorphosis made me believe in miracles. I know I want beauty to be always a part of his life.

And, wherever he is today, I hope he is singing.

Unchained Melody by The Righteous Brothers/Produced by Philles Records (1965)

Belle by Al Green (producer, 1977)

∗                  ∗                  ∗                  ∗                  ∗                  ∗

No Separation

 

If you think you are

not the drunk at the post

office reeking of alcohol

and loneliness, you got

another thing coming.

Pain is pain.

Nobody wakes up one day

and decides to be homeless

and carry around a bottle.

What happens in that space

between the precious baby

and the stumbling man?

If there’s one thing I know,

even though at times it

may seem otherwise,

is that there is no such

thing as “us” and “them”,

and until we realize that

there will be no peace.

So lend a hand, a smile,

some money, sign a petition,

say a prayer, tip higher

if you can.

Each act helps us yield

to the simple truth that

there is no separation

between me and you.

No one is going

to come along

and save us from our

own undoing but ourselves,

interconnected reflections

of each other, each of us

a part of the holy web.

                        ~ Maluma

 

 

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/

 

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)

 

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.

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.

Bill

He smokes a pipe dangles

it from his mouth like a pacifier

Eating he leaves crumbs on

his face his lap the floor

He is Groucho Marx with his

black framed glasses and moustache

loves old New Orleans jazz

dance – shuffles to Bessie Smith:

“Gimme a pigfoot and a bottle of beer”

His fingers are bent from hurled softballs

his teeth brown from neglect

He drinks Jack Daniels and soda

loves chocolate and pies

leaves tobacco everywhere

can’t stand being late

He issues orders to family

and friends and anyone

who is there

He takes you out to dinner

flies first class wears a

red cashmere sweater with holes

When I was a child he was playful

made treasure hunts played Superman

his beach towel a cape

He taught me softball and Scrabble

told scary stories teared up

at sappy movies

Now he walks with a walker

slams it down when angry

has pee stains on his pants

He’s going deaf but denies it

plays solitaire with cards

grimy gray and worn

He becomes melancholy at twilight

And now since my mother’s death

his cat Zorro and the orphan moon

are his only nocturnal companions.