Still Processing After All These Years

It used to seem to me that processing change should take only a short time — as in a few months or a year.  In fact, one of the things I require of myself when I have a major body change is that I wait a year before I decide whether or not I can live with it.  If I can’t, if I haven’t experienced moments of delight, if my change hasn’t become my new normal, then  I can re-examine the question of whether this life is worth living or not.

loss for words
Loss for Words by Joy Murray, 2013

I’m talking about major health changes, more than economic or relationship disasters, but sometimes they feel unbearable, too.  So much of life seems unbearable at times.  But they are usually bearable, often they make us stronger, wiser, wanting to live fuller.  Sometimes, of course, experiences, changes, hurts — they’re pointless and painful and have no lesson.  But we get over them in time.  In time, we process it, get our bearings right, and find a new way of feeling happiness and contentment.

We all carry sorrows with us.  Sometimes sorrow so heavy we can hardly move under the weight.  Sometimes, we dance while bearing that same weight, sometime with another who is also carrying unbearable sorrows.

Life lately has seemed to send me one challenge after another and I’m trying to process these and get on with it.  I have paintings to paint, stories to write, a life to live.  But I still feel confused and muddled about what to do next.  I keep having complications, either from my neurological disorder, or the treatments for it, or the endless bureaucracy and screw ups with my medications.

by Joy Murray, 2017

I feel like I’m caught in a state of constant processing.  And I feel bad that I’m still processing things that I should have already dealt with and moved on. (Oh, the sorrow spiral of feeling bad about feeling bad.)

I found myself last month watching a mystery series that dealt with the aftermath of a rape for the 8th time.  I knew I was using it to process past trauma and to escape the present complications of my medical problems, but it seemed weird and maybe self-destructive to keep looping through this drama again and again.

I called the National Suicide Lifeline, not because I felt suicidal, but because I felt I might be self harming and I wanted to talk to someone who didn’t know me about it.  I was reassured that people process trauma all kinds of ways and that there’s NO WRONG WAY, and NO DEADLINE.  Watching a woman regain her sense of self after a terrifying event is probably a benign way of helping myself grieve things that happened in the past and that are happening now and will continue to happen possibly for the rest of my life.  Not rape or sexual abuse necessarily, but things that make me feel utterly powerless.  And worthless.

I’m dropping and breaking things.  I’m running my wheelchair into door jambs and tearing up thresh holds.

Dragged in my front door thresh hold after working on the porch garden

I feel scattered.  I feel like I’m not reading enough or keeping up with the news enough or enough in general.  I’m not able to do a lot of the things I did before to make myself feel better.  (I may be romanticizing the past, though.  Because I have bi-polar disorder, I sometimes think I did things better before, but I can’t really tell you what those things are.  Toni Bernhard wrote a great article about that in Psychology Today Online:

I’ve spent a lot of time planting things for my porch garden and now I’m spending a lot of time looking at dirt, waiting for those first few leaves to break through.  Shouldn’t I be working on my something or something else?  While I still can?

I’m not writing this to get sympathy or reassurance.  I’m actually doing well.  Remaining productive while dealing with what feels like a rapidly deteriorating health condition in a slow, slow, slow health system.  I’ve experience such moments of bliss and joy in this past year that I could hardly keep from weeping  — even in this past month.  I feel loved and valued.  I am so grateful to everyone who supports me, those I know well, and those I only know marginally through the internet.

Still, I’m processing things and I can’t quite get my mojo working the way I want.  Does any one?  Do you?  How do you process change?

I talked to a friend, after talking to the kind person at the Suicide Prevention Hotline, and my friend said she did the same thing, watched things over and over.  She didn’t feel like she had to justify it either.  She just did it because it was what she felt like doing.  Ah, how I complicate my own life and emotions and needs.

Well, I’ll keep processing things.  And when I’m ready, I’ll do something else.

Processing by Joy Murray, 2018

(The National Suicide Lifeline is a great place to find someone to talk to, even if you’re not necessarily suicidal but standing on shaky ground.  Even if you have friends and counselors and doctors.  They listen and hold up a life giving mirror to reflect life in.  Hope is their specialty.  They also have a chat line.)


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Waking Up the Body with Matthew Sanford

Among other things, I am re-reading the book Waking by Matthew Sanford.  It’s such a gift to those of us who have paralyzed parts — it gives me such a profound respect for the parts of my body that aren’t working, and also for the struggles I’ve had to endure in my family life.  
I have seen several wonderful photographic images lately of flowers wilting and losing their leaves, but I always want there to be one more image — that of the seed growing.  It comes clearer to me as I observe and experience life that with every change there is a new beginning.  Sometimes it’s excruciating to get from one phase of life to the next — and you never look the same.  But if you hold on to your soul, you will arrive.  I hang on to all my bad experiences, not out of bitterness anymore, but because they add to the content of my character, give me empathy and keep me aware of the miraculous nature of all nature, even human nature.
This is a repeat review from my old blog, Chronically Inspired.  It’s a great read for this season.  It puts things in perspective — the gift of life is rare and complex.  Kindness to oneself and others is the greatest gift we can pass on.

I recently became aware of the work of Matthew Sanford when a friend of mine sent me a link to an interview with him on Krista Tippet’s radio show On Faith (It’s now called On Being).  After listening to this wise and thoughtful man, I got his book at the library.
Waking: A Memoir of Trauma and Transcendence, was published in 2006, and is the story of Matthew’s journey to healing after being in a horrific car accident when he was 13.  His family’s car skidded off an overpass, killing his father and sister and leaving him paralyzed from the chest down.
Both his mother and his brother escaped serious physical injury but had to recuperate and reconstruct their lives along with Matthew.  The difficulty and horror of that journey is handled deftly and philosophically by a man who has looked very deeply into the workings of the body and soul.  He has intimately studied the mind-body relationship.  He eventually found a healing path through a yoga practice that got him back in touch with the silent part of his body.  Here’s a quote from the introduction:
“I now experience a different, more subtle connection between mind and body.  It does not require that I flex muscles.  It does not dissipate the presence of increasing inward silence.  In fact, the connection depends on it.  It does require, however, that I seek more profoundly within my own experience and do so with an open mind.  It means that I must reach intuitively into what may feel like darkness.
“Two important descriptive terms appear throughout my story: silence and healing storiesSilence is the word I use to describe the empty presence we experience within our experience – between our thoughts, between each other, between ourselves and the world.  We feel the silence when we daydream, when we appreciate the beauty of a sunset, or when the love of our life truly walks away.  It is an inward sense, often experienced as a longing or an ache.  It is a feeling of emptiness and fullness at the same time.  The silence is the aspect of our consciousness that makes us feel slightly heavy.  It is the source of the feeling of loss, but also a sense of awe.
“A healing story is my term for the stories we have come to believe that shape how we think about the world, ourselves and our place in it.  They can be as simple as “Everything happens for a reason” or as sharp as “How come nothing ever works out for me?”  Healing stories guide us through good and bad times; they can be both constructive and destructive, and are often in need of change.  They come together to create our own personal mythology, the system of beliefs that guide how we interpret our experience.  Quite often, they bridge the silence that we carry within us and are essential to how we live.”
What an incredible amount of wisdom. And that’s just one part of the introduction.  This memoir follows not only the trajectory of Matthew’s life after his injury, but also follows the creation of his healing story and personal mythology.  It gives exquisite insights on maintaining a soulful relationship with our bodies and with our awareness of death.  Death is such a scary and taboo subject.  I appreciate Matthew broaching it with such clarity, and articulating the healing nature of developing a relationship with death.
There are elegant passages about the connection each individual has to family and community.  Often this is as much a story about the healing of family as it is the healing of Matthew.  When the body has been mangled and will take years to recuperate, will never be the same and forever require assistance, there must be, for everyone, a desire to give up.  Young Matthew is buoyed by brother and mother.
His mother moved Matthew to another hospital after a group of nurses informed her that her son was not getting good care.  His neck wasn’t even stabilized.  The nurses mutinied behind the doctor’s back while the doctor was advising Mrs. Sanford to let her son die.
After a short, swift legal battle to get him transferred, Matthew’s mother and brother “poured everything imaginable – love, prayers, hope fear, desperation and, most powerfully, imprints of themselves – into my fragile state of being.  They needed to tip the balance toward living….  Finally I reached a place where I could grab the other end.  I pulled hard and fast.  I didn’t want to feel my body.  I wanted to feel my family instead.”
It required months of intensely painful healing and invasive medical intervention for Matthew to stabilize.   In the process, he learns the defensive technique of “leaving the body.”  His description of the pain he suffers is as harrowing as it is brilliant for his ability to shed light on what severe trauma does to a body.
After the worst of his suffering is over, though, he has to deal with the deadening effect of both his injury and his damaged psyche.  “This is an instance where the absence of a healing story is itself a healing story, although not a very good one.  The silence was left to fester.  The same thing occurs if we fail to stay present as we move into old age.”
What he never entirely loses is his belief that his paralyzed parts have feeling.  Every time he tries to discuss it with his doctors or physical therapists, they squash the idea for fear of making him think he might walk again.  But over a lifetime of dealing with “phantom” feelings, he begins to redefine what his feelings are and what it means to heal.
The practice of Iyengar yoga allows him to finally reconnect to his body.  The most important lesson of it, too, is to find balance, which he learns painfully after pushing himself so hard he winds up broken again.
The forces of life and death, of health and illness, of wholeness and brokenness are all with in us at any given moment.  Finding balance between the two and having compassion for our bodies are the most vital lessons we can learn – it’s an education that can take a lifetime.  Matthew’s story is incredible not only for the insight into life but into how a healing mythology can be created from chaotic and painful elements of life.  His story ends with the birth of his son which so fits the story of his life – life, death, transcendence and loss – that I knew I had been given a sacred story and a deep look into the mystery of life and death and eternity.
I am more connected to my body for having read it even though I doubt I will embrace yoga in the same way he has.  Right now, I’m happy with my chair exercises – although I did love being taught how to shake hands with my pained neurologically damaged feet.
What Matthew is emphatic about is that our bodies are not working against us.  Anyone with a long term illness or disability has to, at some point, hate and fight with their bodies.  I remember literally beating my lower abdomen when I developed neurological damage in my bladder, trying to get it to empty.  It never helped.  I had to have medical intervention – thank science for catheters – but it took me at least 20 years to stop thinking if I did more sit ups and Kegel exercises, I’d get those nerves back.
I will close with another quote from Matthew Sandford’s Waking.  It’s the quote I’m posting on my bathroom wall.  He is speaking of the body’s need for gratitude and appreciation for the trauma it absorbs and the beautiful effort it makes to adapt to injury.
“When I ‘left’ my body during my traumatic experiences, it was my body that kept tracking toward living.  It was my body that kept moving blood both to and from my heart.  Often, as we age and can no longer do what we once could, we say that our bodies are failing us.  That is misguided.  In fact, our bodies continue to carry out the processes of life with unwavering devotion.  They will always move toward living for as long as they possibly can.”
If you’d like to hear Krista Tippet’s interview with Matthew Sanford, follow this link.
If you’d like to see his website, follow this link.


Songs that Rise Above it All

I got word from Dean Brantley Taylor  that he’s got a new song out on the Chronic Fatigue Songs site. This is a site for songs he wrote and produced specifically for CFS/FM/Lyme suffers and chronically ill people in general.  The rest of ya’ll can enjoy them, too, because life is difficult and sometimes a good song about difficulties lightens the weight of it all.  The new song is called “Take Off.”

I’ve enjoyed Taylor’s music for a few years now and am happy to pass on this link to the new song.  He wrote it with Morgen La Civita, whose strong voice gives no hint that she suffers from Fibromyalgia.  She says,  “While I was only diagnosed with Fibromyalgia in the summer of 2011, like most people with chronic pain conditions, I suspect I’ve had it for much longer than that. I got the usual “You’re just a worrier” or “You just need more sleep” to the ever popular, yet unhelpful “Are you sure this isn’t all in your mind?”  I grew up with a mother that suffered from chronic conditions like CFS and Fibromyalgia and as a mother myself, I now see all the challenges that she had to cope with. People like us live for those rare and all too brief, pain free moments. And for me, music makes the time in between go by a little faster.” (Morgen La Civita)

The song represents the dream of Morgen and Dean to… untie the ropes of this illness so we can all “Take Off”  I think it speaks to a universal  yearning to be freed from the things that bind us in life.

There are now 10 songs on the Chronic Fatigue Songs site. 

I thought this was a great opportunity not only to share the new song, but re-post two earlier reviews of Taylor’s music that were posted on my old blog Chronically Inspired, and a guest blog he wrote himself.   

I am not a music reviewer, but I know what I like, and I always enjoy these songs. I’m also deeply grateful that we have the technology to share our music without having to be financed by music corporations.  If these songs move you, consider buying them and supporting the people who are so generously bringing music to us.  Enjoy the song and read on.

From January 2011:

Here’s a new video called “800 Yards Around,” written by Dean Brantley Taylor and performed by Bill Guance.  Taylor is going to write a guest post for Chronically Inspired next month on remaining creative and capturing the life that is given.  I find this song amusing and sad; there’s a little love and a bit of zen acceptance.  There’s a great epilogue where Taylor talks about the simple grace of his 5% capacity.
Enjoy! (I recognize several of the medication bottles that are featured.)

From February 2011

Dean Taylor writes songs about life — his life happens to include chronic illness and fatigue.  That’s the material he uses for his soulful songs. I asked him to do a guest blog and share some of his creative process.  I love that he works on scrap paper — my whole creative life is on post-it notes and notebooks scattered around the house.  His song 800 yards around is a wonderful song of how we have to live within our limits, but within them, there is time for music.  We all need songs like these.   There should be more songs about our struggles with illness — perhaps with song writers like Dean around, there will be. ~Joy

Hi. It is an honor to write this guest blog. My name is Dean Brantley Taylor. I am a songwriter who has had Chronic Fatigue Syndrome (CFS-ME-Lyme) since 1993. By 1999, I became too fatigued to work. I had to quit most everything and severely limit everything else: walking, standing, talking, typing, reading, watching TV … everything.

I even tried to stop listening to music because listening makes my symptoms worse. Apparently, my subconscious mind didn’t like this, because it started creating music in my head, and I became a songwriter. It’s funny but CFS created something that actually helps me deal with my CFS. Here are a few ways that songwriting helps:

1.      Gets the emotions out. A lot of my songwriting is influenced by my CFS experiences. The words, the melodies and singing the songs in my head all help me to express the emotions, the frustration, the confinement, etc. Some of the songs I sing in my head are streaming here: . “Fragile,” “Faith” and “800 Yards Around” are good examples of songs that get my emotions out. “800 Yards Around” is particularly cathartic for me. I’ve sung it thousands of times in my head. It’s strangely fun to sing. I even did a video for it .. .

2.      Makes me feel productive, passes the time. I have to sit alone, quiet, doing nothing for hours every day. As you know, that can get very boring and very hard to do. Writing songs in my head helps me pass the time and makes me feel productive. Over the years I have scribbled down lyric ideas on lots of scrap paper .. lol. I’ve got a lot of melodies in my head.
3.      It’s a work substitute. By taking baby step after baby step over the past decade, I’ve been able to put together a pretty nice song catalog and have established internet working relationships with co-writers, as well as producers, vocalists and musicians. Working on songs gives me the teamwork feeling that I used to get from my job or playing sports. We all have a common goal and work toward it, supporting each other and sharing in the successes, failures, fun and frustration along the way. Our songs are even starting to make it onto CDs and into films and TV shows. Here are some songs I co-wrote with Marc Blackwell; we put together a CD .. It’s even on iTunes and Amazon. I think that’s pretty cool! Most of my other co-writes stream here: .

4.      Meeting friends. Since I got CFS, I haven’t made many new friends in person. It’s too tiring to go outside my apartment or talk (in person or on the phone). But over the years, I’ve made quite a few good friends on the internet by working on songs with them.
Well, that’s all for now. Thanks for letting me blog at you.
Dean Brantley Taylor

From December 2011- Holiday Help

I got an email a few days ago from Dean Brantley Taylor, a songwriter with Chronic Fatigue Syndrome, Myalgic Encephelomyelitis, Fibromyalgia, Lyme, Multiple Chemical Sensitivity and Gulf War Syndrome, with a link to a new video of his song Fragile, performed by Lee Johnson.  It’s a tender, mournful song and a nice respite from the overly bright manic music of the season.

The holidays are the time when it’s easiest to fall into depression and to over-extend ourselves.  Perfectly healthy people are vulnerable, but those of us with chronic health problems, pain and fatigue are even more susceptible.

Even though we can be sane and thoughtful and careful all year long, this is the time when it really hurts not to be able to keep up with our healthier family members and friends.  So today is a good day to sit back, rest and listen to a song that honors fragility.  Think of how carefully you might treat a family heirloom ornament, or a delicate paperwhite narcissus.  Appreciate your own fragile beauty.  You are a gift to the world — your insights, your survival, your very being are all gifts to the world.  Take good care of yourself this season.

Lee Johnson

Book Review: How to Be Sick

I wrote this in October of 2010.  I still refer to How to Be Sick on a regular basis

Toni Bernhard: “There is sickness here, but I am not sick.”

Life is suffering.  It’s not a punishment, it’s not a consequence, it’s just life.  I was fortunate to read How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Care Givers by Toni Bernhard (Wisdom Publications 2010) at a time when I was having a severe bout of insomnia that led to depression and an inability to coherently review the book or work on my websites.

My insomnia is often exacerbated by pain because of arthritis in my hip, knee and feet.  I have tried to make a place for insomnia and pain in my life and not blame myself for it.  It’s odd how we blame ourselves for the medical conditions – we always think if we had exercised more, eaten better, been a better person then we’d be experiencing great health.  I use these times now to read, look at art books, treat myself to little indulgences.  Still, it’s hard after a few nights not to despair – I know the wired insomnia energy will end with a huge bout of fatigue.

My first night with this book, I read through to Chapter 5: Who Is Sick?  She recalls a story by the Theravadan teacher Kamala Masters about her teacher who was quite old and had to endure an arduous journey with no food or water.  “She asked him if he was all right.  He replied, ‘There is heat here, but I am not hot.  There is hunger here, but I am not hungry.  There is irritation here, but I am not irritated.’”

Bernhard reports, “I recalled Kamala’s story one day as I lay in bed after becoming sick, so I silently said, ‘There is sickness here, but I am not sick.’  The statement made no sense to me.  But, inspired by the story, I persevered, repeating over and over, ‘There is sickness here, but I am not sick…There is sickness here, but I am not sick.” After a few minutes, I realized, ‘Of course! There is sickness in the body, but I am not sick.’  It was a revelation and a source of great comfort.  After a time, however, I decided to investigate more deeply.  When I did, this question arose, ‘Who is this I who isn’t sick?’”

It’s very hard to see yourself beyond what is irritating, hurting or keeping you awake.  Years ago, I heard a scientist on some documentary say, Even when you’re dying a large percentage of your body is still working fine.

I began then to try to get myself to pay attention to the parts that were working well and not give all the attention to the “squeaky wheels” of my body.

How To Be Sick is a guide to help you become familiar with that person who is not a sickness, but an individual capable of a joyful life, even though that life may have turned out vastly different than what you planned.  It’s also a guide for discovering who you are even if you’re perfectly healthy.  Bernhard was a student of Buddhism before she got sick and had already done a lot of work toward the Buddha’s teachings on “no-fixed-self.”

There is a lot fight in her to maintain her sense of self, but she’s let the illness guide her to a fuller interpretation of self, that can include sickness.  She contracted an acute viral infection on what was supposed to be a vacation to Paris in 2001.  She never recovered and is now living a largely house-centered life.  Even sitting up for long periods of time can exhaust her.  She has tried numerous treatments from the medical and alternative health communities but is still sick and may be that way for the rest of her time on Earth.

“For me…reality meant having the symptoms that accompany a severe flu, including the dazed sick feeling and low-grade headache, but without the fever, the sore throat, and the cough.  To imagine it, multiply the extreme fatigue of a flu by an order of magnitude.  Add in a heart pounding with the kind of wired, oppressive fatigue that healthy people associate with severe jet lag, making it hard to concentrate or even watch TV – let alone to nap or even sleep at night.”  She lists all the varying diagnoses she’s had that are variations on the Chronic Fatigue Syndrome “garbage pail” diagnosis.

In 1982 she received a J.D. from the School of Law at the University of California, Davis.  She joined the faculty and served for twenty-two years and also served as Dean of Students for six years.  In 1992, she began to study and practice Buddhism.  She went on yearly retreats to meditation centers and led a meditation group of her own.

This practice allowed her eventually to see herself as no-fixed-self and not some idea of a “sick person.”  She writes: “When you are chronically ill…you have to make some very hard choices.  Ironically, people may think you’re giving up, when in fact you are simply giving in to the reality of your new life.”

She quotes Byron Katie, “You can argue with the way things are.  You’ll lose, but only 100% of the time.”
Instead of continuing to argue with reality, Bernhard  spends that energy sharing what she’s learned from her teachers and her own experience about the whole concept of life and suffering.  She affirms that we can find the joy in the lives we have.  She gleans wisdom not only from Buddhism but from stories she’s found from others on coping with illness and death.  She is supremely grateful to have insurance and a loving family.

Buddhism has taught me much, as have most of the spiritual disciplines I’ve studied.  But I’ve always had a monkey mind (I call it popcorn brain), and even after studying at the Buddhist Naropa Institute in Boulder in 1978, I was never able to successfully meditate in the traditional sense.   For one thing the lotus position hurt me.   I could never empty my mind unless I was reading or writing, and later in life creating art.
So I was thrilled when I read, “My online wanderings revealed that many people, regardless of their religious affiliation, found that starting a meditation practice was the single most helpful treatment they tried.  So, Buddhist or not, many people turn to meditation when they become chronically ill.  This devoted Buddhist, however turned away from it.”  It was just too hard when coping with her symptoms.  She began to focus on the “mindfulness of the present moment.”

I was 2 years into my neurological disability when I went to Naropa, my right leg had already started to weaken and atrophy.  I was on medication for epilepsy and had a lot of headaches.  I had “drop foot,” the right foot always in the down position, and my gangly galumphing walk.  The great thing was there were some wonderful people who could meditate and tell me their stories.  I learned even as my mind swung around from tree to tree.  I was there to study poetry first and Buddhism second.  I always felt I’d missed something valuable by not being able to sit more than a few times through the group meditations.  Later I realized it was the stories that remained with me, the lessons taught, more than the actual method I used to learn and rest my mind.

The stories Bernhard tells, the lessons she gives, the exercises she stresses offer such a soothing balm.  The reading is a meditation in itself.  There is a “Broken Glass” lesson that deeply touched my heart and gave me a profound sense of compassion for myself, others and life in general.

She has been blessed with a very supportive husband and caregiver who also practices Buddhism.  The lessons in How To Be Sick can help alleviate some of the isolation and resentment caregivers feel when a loved one is taken ill.  Life is change – a lot of the suffering of life is our inability to cope with change.  This book offers good coping exercises, even if you’re not Buddhist.

I had hoped that the writing of this book gave Bernhard a sense of well being, and it did, but the actual process of it was arduous and sometimes exacerbated her symptoms.  She wrote about this process in the preface of the book and how she was sometimes unable to work on it for months.

Hard-headed in my belief that art processes heal, I asked her through an email if she felt writing the book actually helped alleviate  symptoms, since that is my experience with pain.  She wrote, “You asked if writing alleviates my symptoms. I wish I could say ‘yes’ but, unfortunately, unless I’m very disciplined and pace myself, it can make them worse (as I write about in the Preface of the book). That said, I find it so satisfying that I’m willing to feel worse sometimes in order to finish working on a piece that’s important to me. So, the act of creating is healing — to my spirit and my mind — but, unfortunately, not to my body!”

Ah yes, the spirit and mind can not necessarily influence the stubborn agenda of the body.  But a creative discipline can make living in the body a deeper, richer experience, no matter the circumstances.