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Chronic Pain/ Disability





noun  re·vi·sion  \ri-ˈvi-zhən\

Simple Definition of revision

  • : a change or a set of changes that corrects or improves something

  • : a new version of something : something (such as a piece of writing or a song) that has been corrected or changed

  • : study of information that was studied before

The past few days found me waxing poetic; a combination of spring fever and the overdue calming of a recent series of severe lower back exacerbations,  on what was declared in 2008, after a 3rd lower back surgery, a "failed low back".  I have gradually adjusted to living with the chronic pain, and the hills and valleys; still, over the past few months I have had flare-ups which forced me immobile. Days separated the January tweak* and the February tweak, and the February tweak made the extra Leap day in the month feel as long as a month of sundays. I experienced the awaited respite, calm of healing just a week ago. 

The very real shift in pain and mobility which signals a healing pattern is so reassuring, as sometimes in the early days,  long nights of these reinjuries  I have a very real fear I may not heal; return to the level of lousy I had found an acceptance.  

I spent several years looking for solutions for the 'intractable/chronic back pain, failed lower back' diagnosis; physical therapy, aqua therapy, injections, second through umpteenth opinions.  Each and every opinion concluded there was nothing to do which would improve my spine, and many suggestions that further surgery,  even therapy would cause greater damage and decline.  My  surgeon suggested a three plus level fusion "may" stabilize the area, yet he was very hesitant and honestly stated it could make things worse.  A year ago he suggested it may become a necessary discussion.

The above backstory truly bores me, and only serves the purpose to try to convey how it feels to have yesterday afternoon, with no obvious provocation, my lowerback to go downhill in a barrel.  It is still declining, the pain gathering severity and momentum, each hour today.  

Yesterday morning I was planning my bath for today; I had hoped to finally attend my son's brainbowl match Thursday afternoon.  I have not made any other match this season.  I cannot rightly address how excited I was to feel not only stable enough for Thursday, but confident I was healthy enough to go without significant backlash, ie. provoking another flareup.  I would have gone even knowing the likelihood of increased pain for the next handful of days.  I have learned and relearned adapting my life this way; prioritizing activity with a calendar in my mind, always choosing events in a window which leaves me room to recuperate from the tiny amounts of activity which ridiculously impact my pain.  Yet this past winter (continuing a lousy 2015) this system has fallen through the cracks.  I have been lucky to get out of the house once every three weeks, when before this past year my disability still allowed me to see a friend once a week at a meeting, take a son to an activity (maybe even stay and take him home).  The difference between getting out of the house once or twice a week, not every week, but most, the difference between that and the past year is incomprehensible even to myself.  In a word it is 'bedridden'.

It is so much more than my life being compressed between a rock and a hard place.  It is my husband's and sons'.  My elderly mom who I have seen less than a handful of times this year, when a few years ago I could occasionally take her to some of her doctor appointments.  Every activity I cannot assist or engage in falls to someone else, mostly my husband, but also my saintly brothers. My younger brother has become the best uncle in the entire history of the world, more than partly for helping us maneuver life with two active boys.  My older brother put his life on the back burner to move in with my elderly mom.  And I recline in the supine. The kids barely blink when I miss an activity, which bothers me more than obvious disappointment. Yet my thirteen year old boy who is so good and smart and friendly and funny often seethes a resentment at me which even my husband has begun to notice.  Why, he wonders.  I know.  I am the mom from "what's eating gilbert grape".  Yes, an exaggeration, yet with a grain of truth which seems to keep crystallizing, accumulating negativity my quiet son internalizes.  He hasn't even seen the movie! 

He nor his brother have seen any movie, tv series, lecture in school, paradigm which can give them a construct to make sense of my immobile life.  What he and I and everyone see are parapalegics racing, athletes facing excruciating physical therapy to later win a gold medal.  I cannot even hold my situation and all those heroes in the same thought without shaming myself.  Yet I have done the grueling physical therapy, more than once; it did more damage to my back and was discontinued by PT and Doctors each and every trial. 

My surgeon has consistently helped me get to the real root of these problems, but as he has said repeatedly over the past handful of years, there are not positive outcomes available at this stage; any surgeries are only to prevent further damage to the spinal cord itself, not to mention the many many nerves which travel up and down and exit into my extremities.

So the whole REVISION concept not only applies to an openness to a surgery consult (again), but to a long and hard fought acceptance of living with spine disability and severe daily pain. It has taken months but eventually I get 'ok' with things.  I learn my limitations, I learn to plan accordingly, I slowly slowly at a snail's pace learn to accept myself as a decent, even courageous human, doing my very best, instead of living in shame.  And then I begin declining again.  F---!

I have to say though I still have the confidence of spirit which had slipped through my fingers for many months this past year I am not at all feeling ok about this.  I want to heal, get better! I want to have time in front of me when and after I have learned to live and accept shitty daily pain and a life unexpected, (without most of the activities I had always associated with joy and adventure and how I would parent).  I want to have TIME to LIVE with what I have ACCEPTED! NOT TO GET WORSE!  I AM TIRED OF GOING FROM BAD TO WORSE!,  SCARED SHITLESS of what is in front of me!

So revision.  I studied, really studied Buddhism.  I understand life is nothing but change.  I understand the root of all unhappiness is suffering, and that some of this suffering is optional, especially if one can get rid of their expectations and accept life as it is each day.  Thank Goodness I studied Buddhism.  

Revision.  Today my boys are healthy, typically self-centered enough to not suffer my suffering too much.  Today my husband still loves and cares for me and maybe knows as much as he has ever known how very much I love him and how he is the most courageous person in this house. Tomorrow my son can stay after school for brain bowl and likely get a ride home, so no more or different transportation problems than any other week this year.  My brother has offered to help next week when we might really need some help with rides, not to mention a cheerleader in the crowd.  I have many meaningful things I can do here in my comfortable bed, without moving: creative writing, going through my creative writing book of all books, WONDERBOOK, drawing with my gorgeous birthday pencils.  Writing on this blog; learning the patience to 'save as draft', reread, and post tomorrow.  Revision.  

Revision does not come easily to me; I am a first draft sort of person.  It has taken much time and more regret for me to learn that anything I create gets better when I take the time to reread,  revise. When I put aside any attachment I have to the first draft and trust I will not lose what is golden, I will only have the chance to shine it up a bit.  Maybe I can trust this process with my life as I have slowly but surely learned with writing and art.  Maybe I can apply the concept to my parenting, because in all honesty I still judge myself most often with my original expectation of myself as an able bodied mother.  I am not.  Able hearted yes; body, not even in the same ball park.  Maybe I can revise this; at least learn to pause, center my heart. But in the meantime, today I can be glad for a life spirit which reminds me in the midst of increasing pain, revision can be ok.  Sometimes it can even make things better.  

I thank you from the bottom of my heart for reading this far; comments welcome.  Until tomorrow!!



Is there a way to blog about pain without whining?


Is there a way to blog about pain without whining?


My goal beginning a blog focusing on my experience with chronic pain and becoming disabled was so simple.  I wanted to build connections.  Journaling has been an integral part of my life since I was young.  My experience has taught me as I write intuitively, without editing myself, I learn something hidden from myself however simple it may be.  For example, I may be journaling and writing a sense of being overwhelmed as a mother.  If the anxiety is great I tend to free associate, write with some pressure or speed.  I inevitably will laundry list some irritations leading into scolding myself for feeling anything but blessed.  A pendulum swing between exhaustion and shame.  Interspersed will be the occasional self soothing, reminding myself I am not the only overwhelmed mother who doubts herself.  I am not the only mother who can come up short when seeking the magical formula of discipline (no 'teaching' as discipline sounds too harsh).  Usually a page and a half in I will surprise myself by writing down some hidden in plain sight truth which speaks to either every aspect of my anxiety, or just as often a truth which is separate but shadows whatever topic in my life gives me the urge to put pen to paper and write.  My journaling has been as close to a prayer as anything else I do.  I spit it all out without censor and somehow I find some meaning.  Not usually answers, but something more basic which gives me a better perspective.  The best cases leave me with a sense of surrender and peace.  A realization the original problem or worry is at worst life happening and life has a way of throwing us both snowballs and snow cones.  

Life always changes.  Surrender happens when I see myself as a simple human doing my best; relief often is as simple as acceptance of the above, combined with an ease which occurs when I can move through the day without the background narrative judging, comparing. Magic happens when the surrender/acceptance opens up my vision to how very human I am, thus connected to others.

I was once at a conference of 50,000+ misfits where a very wise woman gently reminded the collective crowd, "there is really only one of us; you know", raising 50,000+ simultaneous goose bumps.  As One.  This was one of a handful of times I felt the presence of something sacred; a part of and kindly in the care of something sacred, and maybe even more importantly, something "good".

So you might ask what does my history of journaling, stumbling and recovering have to do with the above title, "is there a way to blog about pain without whining?".  Even I have to wonder why journaling about pain has defied the above parallel.  No doubt, journaling in a blog makes it more than a bit harder to quiet my ego.  Yet I have a wealth of personal experience of sharing my heart, my vulnerabilities in public settings and finding a close parallel to the surrender, acceptance, magic outcome I have described above.  EXCEPT, when in these same forums my experience has more to do with my pain.  My pain; not our pain, the pain we all share.  Is that where the difference lies?  So how could I get so comfortable sharing foibles which I know alot of folk do not speak freely about, yet chronic pain somehow falls outside my comfort zone which had grown to be quite large. 

Ahh.  Duh, I am not comfortable with my experience of chronic pain.  I am not comfortable.  I am not alone here, as I am pretty sure You are not comfortable later.  But until I accept my experience of living with daily pain, pain which escalates with activity, pain which inevitably feels more than I can handle, until I accept this as an aspect of my humanity I will not be free to share this experience.  

Why such an urge to share?  Simple; sharing when vulnerable has been my path to learning my open and honest vulnerability is not an isolated experience, but rather a few of my fellows will tentatively or boldly approach me to thank me for reminding them of their own humanity. And visa versa!  

The experience of chronic, intractable pain is not as broad of an experience as the discomfort of learning to be honest in a partnership, learning to accept my imperfections as a mother, etc. So what?  Why not look for the similarities instead of the differences.  Why not remember the intrinsic compassion in most of humanity.  My "pain" antennae is high and probing for judgement though my experience has repeatedly taught me this is not the reality.  It may be a reality, but it is definitely not the reality of those certain folk I have found in my path who always smile and offer a kind word pretty much regardless what I say.  They are kindred spirits.  

I have not given up on this blog nor my intention to create connections and help destigmatize chronic pain.  Destigmatize; what a word and the first time I have used, expressed this idea. Yet this is the crux of the matter; sharing my humanity in the midst of living with severe pain. Believing there are others who are trudging this path with me who can use this blog to express their own journey.  Knowing that pain is universal.  A humbling sense which has overtaken my heart and breath after writing the last, which reminds me my pain which is often physical in the first impression has many shadow pains; depression, sleeplessness, hopelessness, a fear of the future, isolation, etc., etc., etc.  

Is there a way to blog about pain without whining?  Yes.  And no.  I think I have to be brave enough to express what pours through my fingertips without too much of an ego editor, without deleting for fear of being judged as whining.  I am the judge.  Am I afraid to be vulnerable? Yes.  Am I afraid to be judged? Yes.  Am I still holding the judgement which has been shared? Definitely.  Who the **** cares?!  I am drowning in isolation, loneliness, and pain which limits my movement when biting and acute.  I am even more lost in those moments when the pain is more of a foreshadowing threatening my movements, making me feel in the same moment both lazy and cautious, scared and confused.  Above all, lonely.  

I cannot underestimate how much joy and love I receive and share with my Tim and my two young boys.  I have immersed myself into jewelry making, a craft and activity which gives me much satisfaction.  Yet the loneliness is so real, strong.  It is a haunting loss of friends I used to see often who I haven't seen this calendar year.  It is the knowledge I do not know when I will be strong enough to maintain such friendships with the ease of simply showing up like the 'good ole days'. It is the preoccupation with the pain which wraps me in a straitjacket.  It is the worry of finances, aging, needing another surgery.  It is a thousand different ways my life is different from what it was and what I always had thought it would be. 

In the clear knowledge the last rant I wrote falls clearly in the domain of whining, I will end with it as it is as honest as I get and what many or most moments, most days feel like in a nutshell.  In a nutshell of a very blessed life.  Please share in whatever way you can if your relate.  Thanks.





It seems I am at the point in my blog to either fish or cut bait.  I have shared my intentions of writing honestly about my struggles with chronic pain and disability, and the first two introduction style posts were both uplifting, even soothing;  reinforcing the idea to share my vulnerabilities as an avenue of spiritual connection.  

Today I have a neck-head-scalp migraine which is hard to smile through.  I just put both of my sons into the car with my husband.  One has baseball practice and the other has a band concert for elementary school kids at the local high school.  My husband typically works on Tuesday evening and I had felt able to push through and do the transporting and attend the concert.  Still my husband seeing flexibility with his evening work rushed home as I was about to leave with the boys and took over so I didn't have to.  His help, no his consistent super hero efforts juggling so much of our lives, is something I cannot begrudge, though I cannot push down the shame either.

When the boys came home from school I greeted my 12 year old like I try every day with a happy how was your day.  I was lying down with ice on my neck and head and I swear part of me sensed a look on his face which I can only describe as resentment.  How can I blame him? My husband tells me it is my imagination, yet he does not see my son's eyes when they fall upon me.  My 12 year old is in a moody phase; has been for a while now.  I worry so he is burdened by what he may see as my helplessness.  I occasionally try to open up a conversation, telling him I get it if my condition bothers him. All of my fantastical hopes to raise the boys in a way which encouraged their openness seem to be fading behind his moodiness.  I wonder when, why the joyful back and forth where he wanted to share every part of his day slipped behind us.  I get he "is at that age" but I also get he is growing up in a home with a mom who is different, disabled, in pain.  Often simple routines become juggling acts burdened by short tempers and frustration as my husband operates as a single parent in a two parent home.  

My younger boy cheerfully tells me with what seems genuine indifference he does not mind I am not going to make his concert.  I tell him how I really would like to go, but.....

The choice is hard.  I could go.  The headache does not make my attendance impossible, it is more it makes it so hard for me to face traffic, sunlight, noise.  The hour of sitting prior the concert would be difficult; sitting always shoots my lower back pain through the roof.  The concert would finally start and I would be there trying to desperately hold back tears and a grimace.  Other families from the school with their smiles and camaraderie would make me want to hide.  A kind word from someone I know a bit better would inevitably trigger my tears.  He really seems not concerned if I miss.  He is nine.  I wonder if this is where the gulf began with my older boy.  I try to remember how often I missed and his demeanor?  I worry this might be how he began resenting me.

Perspective begs me to share we are not an obviously broken family.  I believe I can say with honesty, we are a family who is often mishapened and exhausted by efforts born of love.   I keep a mental tally of how often the boys have missed opportunities because of my disability; rarely.  More often I have missed participation in their lives away from home.  The disability entered our lives with such a subtle force we began shaping our life around where my body could be more comfortable.  Our bedroom has become the dining room with a blanket on the floor and the family room where we share with laughter one netflix series at a time.  The boys often argue who sits closer to me, though the littler one has a force which his elder brother cannot match.  They both know how much they are loved.  They are both brilliant and behave magically everywhere, but in our own home.  They bicker constantly and whine incessantly and in many ways seem "ok"; pretty typical of boys their age outside their unusual intelligence and aptitude.  

I would like to do better, be more.  My mantra this past month has been to push myself further into activity, less concerned with pain's repercussions.  My attitude has been upbeat if not jolly, with the hope of truly putting this into action.  Today I could not meet my mantra.  I could have pushed through if my husband had not been able to match this particular juggling trick, but I would not have been jolly.  I hate it when the pain is so dominant to squash my happy spirit.  I am shamed to say the pain can squash my hope.  I am crying just wondering if my pain has created disappointment in my son.  

My husband just called to say he got the younger boy to the concert, and then the older boy to his practice.  He was driving back to the concert and wanted to apologize he did not see anyone at the baseball practice, which finishes first, to give our son a lift home.  I would need to pick him up.  Which is fine!  I can do that!  I want to do that!  Maybe we can chat about his practice, how he is working on his slide.  Maybe he can hear my love in my voice and remember I am still trying.  I have not given up.  I will never give up on these boys!  The tricky part is not giving up on myself.  



Point(s) of Departure

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Point(s) of Departure

An idea is a point of departure and no more. As soon as you elaborate it, it becomes transformed by thought.
— Pablo Picasso

The phrase 'point of departure' was a phrase which echoed in my mind as I began framing the focus of my blog.  Like the opening page view of ships at sea (or not) I wanted to explore the disconnect between my wide open dreams and the present realities which have felt akin to being landlocked. As I shared in my original entry, I am still finding my way accepting the physical limitations which are so disparate from the spirit of who and how I see myself.  Likewise, the point(s) of departure from my fellows as my body simply could not reach the faces I wanted to reach has been difficult to resolve. I began to see just how many levels I was experiencing a separation.  One step forward, limp lag fall back.  

I googled 'point of departure' sure this phrase was larger than my own conceptions only to find the opening quote attributed to Pablo Picasso. Of course I congratulated myself for finding highbrow company.  

Reading Picasso's quote is heady stuff, lifting the phrase into the clouds.  Each reading spins my mind more than a bit, and when I think I grasp his 'aha' I find it has slipped away. With one exception; without any doubt I find Picasso's 'point of departure' a more freeing view than my original brain storms around these few words. It seems to me to express expansion where I saw limitations.  The counterpoint between visions seems to me where the answers might be found.

I was reminded just how ethereal any concept of self actually is.  It is little more than an idea, yet it seems the trappings of self convinced me rather of the all together different 'ideal'.  It awakens me once again to the pitfalls of attachments of most any kind, especially if I limit myself to an ideal. Life or better put, living!, is all about the elaboration, the transformation, the unexpected conversation. 

(Note to reader!  I am in cerebral outerspace; please breathe deeply so you may not die of lack of oxygen.  Or boredom.)

What I sense with the force of a butt kick is the universal condition of becoming disconnected with ourselves for infinite reasons.  I am truly not all that unique!  The particulars of each of our conditions which may throw us in deep water may be as infinite as the shades of blue reflecting off the calm sea; it is still the same sea. No matter if adrift for loss of compass, mutiny, iceberg, or foreclosure on our dream ship, the point seems to be "so what now, what next?".  

I blush with the heart knowledge I have been beached for many years and though I have dabbled in 'what is next?' I forgot about 'why not!'. Idealizing, romanticizing what seems improbable somehow prevented me from reaching into the grab bag of this universe to discover new dreams, different dreams, better dreams.  Big Dreams!!  I hang my head a bit, admitting to myself, deep inside I felt I did not deserve them.  Such a subtle, almost imperceptible shame for having become disabled. No worries! I realize the limitations I have operated from, knowingly or not, for far too long are nothing more than...

a point of departure and no more. I believe it is time to elaborate. I know it is time to transform!

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Whimspun, a blog

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Whimspun, a blog

Enchantment, silliness, wonder and the everyday simplicity of a subtle "ahh" moment have always been the stuff of life which allows me to detach from the mundane and find a spiritual humility; gratitude and perspective.  Having found myself in the prime of my life disabled with decreasing mobility and daily intractable pain, a whimsical moment, or more to the point, the ability to look and find a whimsical moment has been a literal saving grace. Writing, essays, short fiction, poetry, and of course the occasional rant offers me a reliable path to see and believe the everpresent whimsy in my life.  

Often of late, my condition leaves me home bound or even room bound for several weeks at a time; each day out and about with even mild activity can rebound directly into 'flat on my back'  again.  It can be lonely.  

I began having the recurrent train of thought, that if seeking, spinning whimsy can help me reconnect with the best parts of myself, why wouldn't sharing these words and stories help build connections with others?  It is a simple premise; not all that original.  Yet aren't the best ideas simple?  Simple, yes; easy, not so much. 

I previously learned in the course of accepting help in another type of suffering derailing my life the power of sharing my experience with others. Walking headfirst into my fears and sharing honestly my vulnerabilities were often the most fertile meeting ground for forming connections and better, offering another a similar sense of hope, relatedness. Somehow becoming physically disabled and having crazy pain seemed at odds with the fellowship I had already found, trusted.  The worse my spine deteriorated the more and more difficult it became for me to show up in the arenas of life I loved and aspired to be committed.  Room parent in school, volunteer in pto, coffee maker in meeting, even primary homemaker in my house; these roles I loved and took pride in became increasingly difficult until they became shadows and shames.  So many activities I engaged in when my children were young which they have no recollection of other than my stories and some photographs.  The first bridge was making the connection from my head to my heart, accepting I was not going to be able to do many things I could barely imagine as not a part of my life.  A parallel bridge is accepting there is no shame in this.  

It has taken a handful of years and increasing disability for me to push through my hesitation to identify myself as someone with chronic pain and disability.  It is not easy.  The gulf which I struggle across between my sense of what life would be and what life is; the canyon I can lose myself in as I learn to accept my body and its limitations as a characteristic, not a label, these are the fears which turned inside translate to a shame not so subtle.  I understand not all will relate. Whimspun is in search of those who do, or perhaps those who want to.

Whimspun, a Blog is a newborn work in progress.  While I will be exploring the topics I touched on above, I promise WHIMSY in all of its glory will be the heart and soul of this particular note in a bottle. Striving for an ebb and flow between reader and myself, pursuing whimsy and honesty, can ideally increase the compassion, laughter, joy, acceptance and of course, Ahhaa moments in all of our lives.  That is a very good thing!

Whimsy Is Hope!                                                                                      Pass it On!

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