JUNE 9, 2012 11:45PM

FEAR

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This is the sound of the voice I did not have back then, at the height of my suffering. Either because I literally had no voice (disabled by a tracheostomy), or because I had no power to speak up for myself in the vulnerability of my situation. This is for me. I make no attempt to understand others to mitigate or forgive, to present the bigger picture which is the fair and reasonable thing to do. 

Today, 8 years later, I have no voice again, having lost it temporarily to a throat infection, or strep, or whatever this painful condition evolves to prove itself to be. This condition struck me while writing about "The Return of My Voice", which followed "Speechless". It is ironic that writing about the return of my voice brings me more powerfully to the feeling of helplessness that defined my experience in the burn ward. It brings home the point that hope can trigger more anxiety then having no hope; when I had no voice at all there was less struggle because the situation was so hopeless, and because drugs sedated my will and muffled my experiences under their heavy fog.

The return of my voice coincided with increased consciousness, and my suffering increased in proportion to my ability to register it. Under the circumstances, the greatest fear was losing my voice again, the memory of its helplessness still vibrantly vivid. My voice was my one and only means of interacting with the world, of being able to manipulate my situation to reduce my intense suffering. Completely immobile, I could not get up to do anything to remedy whatever my circumstances were. With no movement, I could not even create the illusion that I could somehow escape from the intense pain of my experience. Not even to shift my weight to relieve the pain of a position my body was condemned to. Not even to press a freaking call button.

I was at the complete mercy of others. Of their indifference, their kindness, their harshness. I did not even have the one tool babies have to call attention to their needs - to cry.

It was awful. As drugged as I was, it was awful. I would not wish it on anyone.

I give thanks that I had the blessing of grace to endure this period without going mad. Maybe I'm confusing the effects of drugs with grace. No. There was grace. And I have no idea how I became a beneficiary of it, except to speculate. And there were the drugs. Thank goodness. And it was still awful enough for me to be terrified of losing my voice again, once I was removed from the ventilator and given a valve that redirected my breath back up through my voice box.

It was very hard to speak. But I could. I was no longer invisible. At least I was no longer as invisible.

Rosa Luxemburg said “Those who do not move, do not notice their chains.”

Using my newly returned voice quickly taught me that I would still go unheard. 

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In the last year, I have had several bouts of deep anxiety at night. Always in the stillest, darkest, quietest of night where there is absolutely nothing to conceal the unclossetted fears. Fears of not being able to breathe or move. They bolt me upright to grip the edge of my bed as I steady myself with focused breathing. Then I respond to the urge to move, proving I am not helpless. I get up and go to the bathroom, turn on the light which seems to dispel the shadows of fear and allowing me to see where they are living inside me. I talk to myself. I know it is all irrational, which makes me afraid - how do I deal with the irrational? At least for now I can get up and take action, in effect, creating a sense of taking control, which is very reassuring. It doesn't take long before I can return to bed restored to some semblance of centre, where my bed is just my bed and no longer a narrow, constricting coffin, and I can stretch to antidote my contractures as proof they will not strangle me, and breath deeply as proof I am not drowning.

I never had episodes like this before my burn. The very first experience of something like this was the night before returning to Westchester Medical Center for my first corrective surgery several months after discharge. The surgery would immobilise me. It was the immobilisation, and the fact that the surgery was to my chest, where I breath, that triggered the panic. It was the first time I experienced the depth of my trauma as a powerful ghost that did not respect the demarcations of past and present.

I dealt with it. Same way I dealt with all the other difficulties; with a sort of ruthlessness that allowed me to move on, legacy of my Irish-Chinese stock, I presume. The anxiety did not return for a long time.

When it happened again last night, at a time when I am fresh with the memories that I am writing of, I knew with clarity their place of origin. 

It is not enough to get through the episode. I want to go in, as far as I can, and hold it. So I may release it with understanding. With the unshed tears it may be calling for. I am afraid it will haunt me forever, and that one day, perhaps when I am dying and I can no longer take action, it will rage a new fire to consume me in. So I must make friends with it now. While I have freedom. So I may die in freedom when it is time to die. That's the newer Buddhist side of me. My old habits want me to gear up and go to fucking war with this. My fingers are twitching to grab a battle axe. But those old habits also kept my fears in hiding. Those old habits don't work here.

I am very tired now. It is hard to write this, to concentrate on this difficult place. Even second hand, buffered by time. When the anxiety occurs it does not occur to me as I am. I cannot say, "Let me meditate, bring my meditation to it" because I have no idea where the mind that trained in meditation has even gone. I am stripped of my usual coordinates and references. Is the fear just a habitual response to groundlessness that knows a terrific story in my burn to feed off?

I don't know. I know that when I resume a sense of control by taking action, it brings my chin just above water and affords me just enough breathing room to meditate, which allows me to be more open to what I am experiencing.

I suspect these episodes are surfacing now because I have suficient capacity to permit them with compassion.

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I keep getting up to do something else when I'm at the entrance to my pain. This is difficult.

Do you want to say anything, Maria? You are safe saying it here. Anything.

Yes. Why did the techs make me feel bad for being afraid?

It is safe here, Maria. You do not have to make a case for yourself. You do not have to be right to validate your suffering. You do not have to validate anything. Everything you experience is complete, is true, is yours alone. Your feelings are not a democracy and not subject to vote. It is safe here to speak your truth.

I am angry. Worse, I am broken to know indifference to suffering. To witness my own extreme suffering met with indifference.

Lying there
incapable of any movement
on that stainless steel debridement table.

It had a central ridge created by the slight gradient necessary to run water off the sides of the table. The ridge may not even have been visibly perceptible. I don't know. To my burned, skinless body that had lost all fat and fascia and was exposed to the bone in my sacrum, that ridge was a blade on the raw, oozing of my back, a screwdriver in the open wound of my sacram. When the cocktail of narcotics was peaked in me I would not feel the ridge. But the forcefield of my narcotic shield would start to disintegrate quite quickly, allowing the return of pain in a rapidly building rebellion of pain.

I could not escape the ridge. I could only shift my weight slightly to one side by pulling on the raised guard of the table with the only hand I had, just to shift the blade to a different line of me, sacrificing up this part of me to buy reprieve for another. There was nothing I could do about the screwdriver eating into the open wound of my sacrum. The pain got louder and louder until all I could do was moan.  Others talk about the pain of the wounds being scrubbed. In the screaming din of my sacrum being eaten, I could not feel my wounds. I don't know if this was the mercy of lost nerve endings or the curse of worse evils. The pain made the 2 hour sessions very, very long.

I would go into the debridement sessions knowing what was coming. Torture begins in the mind, in the anticipation. It creates a viscious cycle. I also never knew exactly what time my debridement sessions were going to be, so I had no way of really focusing my own preparation. The fear free floated.

The techs would enter my room in a flury of activity, as if they were working an assembly line with a quota they had to race toward. I was the next slab in a line of slabs. A diificult case, time consuming, inconvenient. Transferring me was difficult - it took up to 4 female workers, each holding a corner of a sheet I was on, somehow reaching over or around the bed to get me onto the metal table. The table was hard. I could not move to see if it was cushioned but it felt as if it were not. By the time the techs came in they were geared for action, the logistics of assembling 4 people was difficult and allowed only a small window to get the transfer done. There was always a sense of a rush, with no time for me in the equation. There was no time or energy to consider my experience. Once someone lowered me too abrubtly on the table. It was excruciating, pain screaming through me in reverberations that I thought would fracture me apart. I became scared after that of transfers. There was too much rush, none of the careful planning that moving cared-for-cargo inspires. Anything I said during this transaction was an interferance, an annoyance. My concerns, my fears were dismissed, treated as symptoms of a neurotic, difficult patient. This was terrible, as bad as the pain. It made me very afraid to know that I did not count, that I could not speak up and be heard. I would beg for cushioning on the table. I was told there was cusioning. I could not see but my body felt only terrible blades and screw drivers and hard metal that bore into me. If there was cusioning, it was not enough.

Don't tell me there's cusioning. Listen, for God's sake, LISTEN! I'm telling you it hurts like hell. Whatever is there is not enough. LISTEN! Put more cusioning on the fucking table for me! Don't dismiss me with your indifference!

What is the difference between torture and treatment when both may hurt as much?
- Motive. Intention. One aims to help, the other to hurt.

How do I tell them apart?
- When I tell you I am suffering you respond with compassion.

That's how I know you are not my torturer. You don't even have to have the solution. Your willingness to hear me, to feel sorry that you must inflict pain, this assures me you will do your best to not inflict pain as you do the work that must be done. Your indifference tells me you will make no such effort. Your indifference fills me with terror. Now I must survive my burn, must survive this terrible pain. And I must survive YOU, you that holds my life in your hands.

In my mind I am walking a fine line between madness and survival, always looking for a place to stand, turning the world upside down to do so, making my torturer my keeper, trying to connect with you in the hope you will not hurt me anymore then you have to. There is no place for my fears, I have no where to put them, no sympathetic ear to pour them into, no safe place to harbour them, no one strong enough to hear them without breaking and strong enough to help me without breaking anything else. It is a delicate position, being a hostage. I am invisible, no one, unimportant, anyone can come into my room and give me scorn or inflict pain on me. All it takes is an indifferent and inept nurse or technician. They know I cannot do anything about it. I might even be dead soon. So my terror is deep. I cannot afford it. Surviving is too difficult. My mind is like water, going where it needs to go to hang in another hour, another day. I turn away from the fears I cannot afford. I forsake myself the way others have forsaken me. It is so terrible I cannot deal with it and expect no one I love to be able to handle knowing what I suffer. I cannot afford the people I love to crack, I need them fuctioning. I do not tell anyone. It is hard enough as it is for them too. So I forsake my feelings in an unconscious Sophie's choice.

My unconscious will to live finds conscious strategies for physical and mental survival. My whole life has trained me to deal this way when the odds against me are stacked too high; don't try and deal with it all, only deal with what I can.

The mind is most important. My control center that is capable of conspiring with and actualizing the will to live. It is where the giving up or holding on take place that determine the continuity of the game. I was not about to give up. So I smiled and tried my best to be likeable, a begger of kindness. But the fear was there, also like water, finding cracks, coming out in the way I spoke. My fear and poverty combined to portray me as neurotic, as difficult. Even my husband thought so. I could see it in their faces, in their tone. They did not have to tell me. It was crushing. Even my gentle attempts at helping others be kind to me was failing. I did not know how to demand. I was too afraid of my jailors. As afraid of them as I was of my dad who also did not see or hear my suffering and trained me to wipe all expression of disagreement off my face to save myself from public flogging. To actually voice disagreement to him would guarantee physical injury. It only took one word from my sister to earn her a slap so hard she could not turn her head back to face forward for 10 days. My survival instincts gave me a healthy fear of confict when I had no chance of escape or defence. So I survived this the way I survived my childhood, swallowing the fear as my own weakness. Suffering the compounded suffering of forsaking myself, the compounded suffering of knowing I was not worth the care of those who inflicted pain on me in indifference. And now, now, I have many threads to untangle. Threads that go back much further then my burn and all the way to the childhood that bred misunderstanding.

 

In the white-tiled debridement room that looked like a cross between a mortuary and a mechanical garage, lying on that metal table, mostly looking up at the ceiling at the track that housed several hoses that the techs could slide into position to hose me down. Mostly because looking up was the only position I was capable of. I would hear the hoses clank in their tracks, see them pump rigid with water, my body mirroring the rigidity in anticipation of its cold. I lost my ability to regulate body temperature. Once my bandages came off and I lay there, my limbs incapable of strainghtening out, a cesspool of leaking wounds, incapable of even lifting my head up, I knew that once the water started trickling over me it would rapidly suck away the little body heat I had. The debridement room was kept very warm to slow down my temperature loss. And the techs would wet only the parts they were working on, focusing on bits at a time.

I did not mind getting cold because it was the least of my suffering and because I hated being a stinking, sticky mess. I loved personal hygiene and to have to the spend the majority of each day in foulness, rotting, steeped in my own toxicity divorced me even from the memory of the wholesome wholeness I used to possess. So I did not mind the uncontrollable shivering that followed each debridement and lasted an hour or two despite piling on blankets. At least I was shivering in my own bed, now euphorically soft after the painful hardness of the table, now clean and crisp with its fresh sheets and no longer the stinking sticky wet sheets I left. It was as good as my debridement was hard. I could rest as the pain abated, exhausted. Very exhausted. At least this was true when my bed and room had been prepared in the 2 hours I was gone, which was almost without exxception. The exception was unforgettable though - I had been abandoned on the hard metal table in the hallway, pain screaming in me. All pain killer spent. My room had not been cleaned, was not being cleaned. No cleaner was in sight, or at least no one told me that one was. Already at the end of my rope, I was left in the hallway with no idea if anyone was even looking into getting my room ready, with no idea how long I was to hang on with no more rope to hang on to. I was delirious with pain. The unit was abuzz with acitivity, everyone too busy to pay me any attention. My husband's childhood friend came to visit and this is how he found me, in the hallway, rocking my head from side to side because it was the only movement I was capable of and I had no way of dealing with this terrible pain. He started small talk with me. I was not capable of engaging, and knew he had no way of even relating to what I was going through. I tried to pull myself together as best I could, and asked him to please look into whether my room was being cleaned, my bed being made. And urged him to press whoever he found into ensuring it got done ASAP if it was not already being done.

Steve had no way of understanding that my experience at this point was far more excruciating then the burn was. No one would dream of trying to have a conversation with someone in flames, that situation would solicit a crisis response. What I was going through, abandoned in the hallway was more painful then the burn. How could anyone walk past that as a non-event, just because it would not kill me?

I understood Steve not understanding. How could he. But this was how a lot in the burn unit also responded to me.

The techs would move in a relaxed way, having conversations about their everyday life. While I lay there suffering excruciating pain from the procedures they were inflicting on me. How could they have conversations about their children, their cars, their shopping while I am in so much pain I almost wished I was dead? How could they be so indifferent to my suffering? Their indifference terrorised me. With my head hanging back on the hard table, in a pain I cannot pin point - later it was found I had a stage 4 bed sore on the back of my scalp - my trache hole exposed to the risk of water trickling into it to choke me, I felt as if I were set up for a drowning session. I hated having my head fall back. It filled me with terror. Already paralysed, I was further stripped of the line of sight to what was happening to my body, further exposed to another source of suffering from the choking of water in my trache. And this was all terrifying because I was with people that demonstrated no sensitivity to my experience. I begged for a pillow for the soft relief it offered and for the precarious gravity fed angle it saved me from. But I was scolded for asking the techs who were already gowned and gloved up, and to go get a pillow meant disrupting their routine.

Then why wouldn't they just always give me a pillow? Why did I have to beg and get reprimanded? Again, a demonstration of the complete lack of any sensitivity to my experience. If they were in my place for one hour I find it hard to imagine them reprimanding me or showing annoyance at my request. They'd get me the fucking pillow without me having to ask, they'd line the hard tray with enough cusioning without my having to beg, they'd work as quickly as they could focused entirely on speed, to cut short my suffering. And they wouldn't make me feel bad for feeling afraid.

With Jim, Mary, Jerry, Judy, Marie, with Anne, Charise, Millie, I always felt safe. I was not invisible to them. When I was in pain, even if they could not remedy it, they at least heard me and I could see that they waanted to help. I did not feel terrorised with them. They did not disqualify my fear. Jim and Jerry had the bonus of being big and strong men. They could lift me up as if I were a doll, and place me down gently without struggle. For this reason alone, I loved it when they did my dressing change. It was a rare treat. They brought care to what they did, examining my wounds with the light of their own being turned on, with seeing eyes.

They heard me from a place of humanity, confirming my own.

They would even ask me how I was doing.

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The comments I have received, with gratitude, have compelled me to add this:

As I stated in the first paragraph, this writing is the backlash release of a stored suffering I was helpless to deal with at the time it happened. It does not attempt to be fair.

In fairness, I would explain that I was in the burn unit for more then 6 months which meant I got to experience a wide range of behaviors in each person and a full spectrum of personalities in the staff. While I would recommend a few people leave the caring profession for jobs they are better suited to, most simply were straining under difficult circumstances in a very difficult job. No one was unredeemable and it made me appreciate the professionals who were consistently good for the saints that they are.

In the near future, I hope to be able to write about this experience  in a way that conveys the suffering of not being heard as a vulnerable patient and the power that care-givers possess to heal or hurt, without blame or causing others to blame. I would rather show why it is important to care, rather then condemn for not caring.

Here, on OS, I am so grateful for the caring of this community, to you, for bearing witness to the difficulty of this experience for me so that I may find my way to more constructive expression.

Which brings me to this - please take away with you a message of strength - I survived this and do not identify with suffering. It is my strength that recognizes the suffering that remains, allows its nakedness, and heals it. I am alright with my suffering, which frees it too. If I have PTSD, that is alright too. I will work with it. I am proof of what can not only be survived but transformed - I am happy. Part of my joy is the ability to embrace suffering. When I read your sympathetic comments my heart grows wider. I do not want you to feel sad or angry - remember the strength I got from my difficult experiences and the empathy it has allowed me to develop.

And finally - I must emphasize I also had the benefit of wonderful nurses. Professionals as fine as our own OSer AJ Calhoun. I had no idea back then that I could write and would - but I sure was being set up with the material!

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I have come up against a hard place in the writing of my burn experience. This journal entry was an attempt to open myself up more to what I was struggling with. Posting it here is a way of setting it free a bit. I hope. Do not read this if you are feeling bummed. But, then again, reading this might improve your perspective on whatever you are going through.
You are bold and courageous to post this piece of writing of your deep pain. I see many positive signs in here that spell healing.
I hope that writing this has given you much healing.
rated with love
You and I met for no more than a day or so, at Mohonk. Your grace and strength have been with me since.
I would like to believe, deeply, that, for you, this writing, this, reflects some healing.
Bless you, friend.



r.
As a medical professional I can never read or hear enough of this sort of remembrance. It is critical to the development and maintenance of the caregiving human to remain fully mindful of the agonies other humans may be subjected to. It matters. It matters, of course, to you, the victim, the tortured, the unheard, and is, as you say, a way of setting it free. It is not disappeared into the ether, though. Someone has heard. Someone who always listens anyway, but can never hear acutely enough, move deliberately enough, spend enough time trying to listen down into each patient and drawing, to the extent possible, the person in there back to the surface. For that reason this has been a walk through the fire with you. I thank you for that. It is a grace.
I'm filled with sorrow that this was your reality for so long and that it's now a part of your memories. Such a thing is truly unimaginable though you've written it well, to add the indifference of others to your agony is even more unimaginable. I don't want to understand what kind of people can chit chat and take their time, or scold you, when you are suffering.

I think of you often and wonder how you are. I think of your Emerald Dream post and so vivid was it, I can feel the same giddiness I felt when reading it, perhaps it's time for me to read it again. Having read this I can understand your fear, it seems completely rational, the mind reviews every experience along with the feelings that came, as it must to reconcile all events. Now for some reason it sound as if it wishes to go back further and reconcile more of your past.

I don't really know what to say except I honor your fear. Peace and healing to you.
It has been a while since you posted, but you came back real and powerful. Excellent piece, Maria; good to see you. R
RP, Jonathan, and AJ, and the 2 non-commenting raters - thank you so much for bearing witness and for responding to this naked post with your kindness. I'm especially grateful you took the time to read it despite the length.

@ Romantic Poetess - healing is inevitable for me - I seek it. But it is hard all the same and I appreciate your love - there is nothing as powerful to help the healing journey along. Thank you.

@ Jonathan -writing this was part of my healing. daring to post it is part of my healing. your reading and gently embracing response is the softest, nurturing part of my healing and I thank you.

@ AJ - I really wish you had been my nurse. It is the hardest job and yet you do it with all of you, well, with the awareness and sensitivity and respect that only the best of carers have. I marvel. And I know you understand exactly what I am talking about. Thank you.
Intimate, disturbing, beautiful and terrifying. Just the way I like it.
@ L'Heure Bleue - hello friend. This piece was a necessary journal vent for me and so did not present the conditions that would help forgive the techs their lack of sensitivity. I could always see behind the behaviour but it is true that the lack of sensitivity creates a lot of suffering and so I do want to address this. I hope to be able to eventually do this in a way that does not solicit blame or guilt. I embrace all of my journey with gratitude. I continue to learn peace with pain and peace with joy. Thank you L'Heure.

@ Thoth - that's a fine compliment you gave me. Thank you very much.
@ L'Heure Bleue - hello friend. This piece was a necessary journal vent for me and so did not present the conditions that would help forgive the techs their lack of sensitivity. I could always see behind the behaviour but it is true that the lack of sensitivity creates a lot of suffering and so I do want to address this. I hope to be able to eventually do this in a way that does not evoke blame or guilt. I embrace all of my journey with gratitude. I continue to learn peace with pain and peace with joy. Thank you L'Heure.

@ Thoth - that's a fine compliment you gave me. Thank you very much.

@ Leslie - Thank you - big smile.
It's just hard. The only way to live was to go through this, and you did, and it's agony hasn't left you. I don't see why they couldn't have been more generous with the medications, they can put people under for a colonoscopy and a dental cleaning.
Somehow, you have to let yourself know that you aren't going to relive this, even as you remember it, you aren't going to relive it. And healing from it and slowly letting it go doesn't make it less valid. Always, some fear, that if you let go and surrender that the rest of the wave will come in and drown you. Or that maybe it wasn't that bad if you can get better.
I got a rolfing session last week. The first of what I hope to be the series. I want a new relationship with my hip, my back. My fucking sacrum. I have to accept that at some point, while he's toiling away on my fascia, and having me breath, release and move, I may remember the whole bloody thing. So, Maria, if I let go and fall into the ethers, and you let go, and fall into the ethers, I will meet you there and we can have a drink, watch the sun set, watch the Milk Way rise, and keep letting it fall away.
Maria, all my best wishes are with you. "I was not invisible to them. " and this is so imρortant...the feeling of love and being loved is a healing remedy in any case. And I want to thank you for sharing , cause, indeed this work and your life changed my ρersρectives. I am glad to meet you and I admire your strength.
There aren't enough right words to say here. Your writing is raw and refined, mad and sane. The self control almost always present, that screaming incoherent one just licking the edges. I know you've changed the way I think. I will never see a silent sufferer without an echo of thse words to remind me to have compassion.
Some how, some way this should be required reading for every person in the field or entering the field of medicine. There are people inside and even if they cannot move, they are present to your every move...
Compassion requires so little sometimes. This makes my heart ache. ~r
I am speechless, compassion to yourself in your healing process seems like the way...I can't even imagine...you are so strong....prayers and thoughts are with you!
I could not have imagined any person other than you, Maria, I would allow to guide me into the fires of the hell you experienced, and even then I put off reading this because I knew how honest and real - excruciatingly read - it would be. Of course, I took the trip, just now, and am still reeling, back in the illusion of safety and even comfort but with a heart scarred from empathy you ignited in me with such piercing eloquence. So many flashes of insightful brilliance here. I started trying to remember them so I could list a few, but now am hesitant to appear to give more weight to those I list as examples. I will, anyway.

This, reverberated with startling resonance - still does: It was the first time I experienced the depth of my trauma as a powerful ghost that did not respect the demarcations of past and present.

And this profound and perfectly revealed discovery: It is ironic that writing about the return of my voice brings me more powerfully to the feeling of helplessness that defined my experience in the burn ward. It brings home the point that hope can trigger more anxiety then having no hope.

So many more, so many. You are an amazing woman. So wise and courageous and loving. It is worth enduring all the spam in the world to have found this place - OS - if only to have met someone as wondrous as you.
you are hardly 'unheard'.....
not any more!

The return of my voice coincided with increased consciousness, and my suffering increased in proportion to my ability to register it,

true for me, metaphorically.
my dad had a trach
you are hardly 'unheard'.....
not any more!

The return of my voice coincided with increased consciousness, and my suffering increased in proportion to my ability to register it,

true for me, metaphorically.
my dad had a trach
YOU are what OS is all about.

Your "voice" is loud and clear.
The very difficult things, those which we can hardly speak of, that we do not want to remember, are sometimes the things which teach when we remember, about ourselves and others. To be human is to recognize that so many of us are different. Different in our awareness, in our response, in how we value others. We are shown the value of our differences. In some we see that they are natural healers and they are in their real profession. In others we see why they are not where they might be best serving. They cannot identify with their patient and cannot reach empathy for true caring.

More than their deficiencies, we see how others are victims of their caregivers deficiencies not being served as they should be, as would be more human and with respect. Your experience is one very painful to hear about and even more painful to understand that you might not be alone. Everything we can learn from this and how we can share that learning might make it better for someone else in that position. The real element here is caring. Teaching each other the depth and necessity of caring, the proper sense of responsibility and level of real empathy.

We are all teachers, we are all students, as we travel through our lives we experience many things. As we age we understand so much and as we reflect on what we have seen, we become, all of us, teachers. Giving that ability to see, sharing it with others, we can make life better for all. The ugly things, the painful things are in a light with the intention of being able to learn from them, and change things for the better.

Your life touches many lives, your experience teaches many things and your sharing is valuable to humanity.
I read this and find myself wanting to go back in time and kick some serious asshat ass. Burn unit caregivers are supposed to be the best. Yet yours subjected you to pain and indignities that were horrifying and inexcusable. Your courage is beyond inspirational. I'm so glad you're finally exorcizing those horrendence demons. They belong in the ashes from which you have risen with such beauty and grace.
@ Oryoki – I was given pain medication it just could not keep up with my pain cycle. Later, I was so concerned of developing addiction that my nurse had to explain pain cycles to me and reassure me that it was alright to allow my next injection. The one time I insisted on my shot was for the debridement – I wanted it ASAP and maxed! I memorised the cocktail recipe that worked best for me, and knew exactly when it should be administered to account for time lag. Trouble was techs were not allowed to administer it. I loved it when the “good” nurses did my debridement – they had the POWER! This whole process of healing, while it can be aided by the rational, is really not a rational process. When the fear comes up, it really surprises me – a jack in the box. As interesting afterward as it is frightening in that moment. I believe it is what I'm coming to understand as body memory. My capacity to meet it at the level it alone dictates seems to be determined by the capacity for genuine, ingrained, compassion I have developed and continue to develop. That compassion can absorb and embrace anything to the extent of the stretch of its arms. Because I am committed to developing this compassion, I do not doubt I will heal. I have to continue to allow, to exercise the courage to allow. I like our date in the ethers where the cocktail will be yummy and the view divine. See you there.
@ Olga – hello and thank you for coming to my blog to bear witness to my experience. You totally get it. And I am deeply satisfied to also read that what I have written has impacted your perspective. I'm glad you came.

@ Dianaani – Thank you so much for your comment – all the right words to encourage me to keep going with the difficult writing. Deeply appreciated.

@ Linnn – I wish... I remind myself I must do this for the good care givers that do not know that may one day read wht I hope to put out there. And then see the incredible power of the impact of their work.

@ Joan – yes. So little for the open and trained heart. And yes, it is in the small things. Yet I recognize the challenge for someone who is stressed or burned out or unaware or exhausted, especially when they do not know.

@ Anne – welcome Anne, and thank you.
@ Matt – can I adopt you? Thank you so much for trusting me enough to take this painful trip with me. The suffering in me thanks you for voluntarily witnessing what I would never have volunteered to experience, for allowing the scarring of empathy to hold my heart. The writer in me thanks you for reading my words with intelligent sensitivity and the applause of your feedback. All of me thanks you for seeing the best in me and for telling me I am worth eduring spam for – I seriously feel incredibly valued!

@ Kate O'hehir – Thank you for coming to read this. I popped over to your blog and, wow, what a coincidence the post I see is on the self immolation of protesting Tibetans. My own severe burn gives me great empathy for them. I scanned it and will return to read again, and comment there.
My own jaw and teeth went “owwwwwchhh” reading about your surgery – that's no joke. The chanting is incredibly helpful, working like the aural version of a mala – each syllable a bead for the mind, each bead leading to the next, the mala of syllables encircling the mind in its protection. The mind can only do one thing effectively at a time. Giving it something else takes it away from the dark rabbit hole of fear. When that something else also carries personal an transcendent meaning then it is all the more powerful in its ability to protect. I also use chanting. But those middle of the night attacks were so strong chanting was not enough – I had to literally move my body, move to release and buy a bit of space. Eventually I could use chanting, then silence. Sort of step down strategies. And it seemed important to actually experience the disruption of the fear, to let it knock me sideways and to experience being out of control, without actually losing it. Don't know if any of this makes sense to you. The healing process is a true education for me. When you spoke of the impact of the noise of dental reconstruction I knew you could understand. Om Mani Peme Hung is my favourite saving chant for all challenges. Incredible what its helped me through. Thanks for understanding and for cheering me on, Kate.
@ James M. Emmerling – Thank you for “hearing” me. You'd know what the trache means. And yes, waking up to life does not discriminate between good and bad – it all gets experienced more vividly. May you be fearless in the experience of your own vividness.

@Safe Bet's Amy – thank you for your awesome compliment.

@Sheila – I suspect you speak from the experience of a life dedicated to caring and learning and teaching. So very true, everything you have said – I'm getting that. I could have been on the other side of my bed, I have been on the other side of the equation, and I have been oblivious in my own life. I am grateful for my lessons that continually show me both sides of a coin, the many facets that make up one shape, that allow me to more deeply appreciate the need for caring and the obstacles to it. Thank you, Sheila.

@ Sally, if I'd known you then I'd have made a phone call with a special request for THE Swift Kick to be delivered by your long legs in high boots, and swinging cape please. God, why did I not have your lines back then, the one you gave that doctor of yours that took care of his dismissing arrogance and got you in on the team of your own care. My husband has told me I need to work on developing NY directness – I've been practicing on him with some success. Not absolutely sure he's applauding though. In fairness (the post did not aim at fairness so I must make adjustments here), I've been told that a burn unit is probably the hardest place to work. Extremely demanding on every level for medical workers– professionally, emotionally and psychologically. One sweet nurse, new to the unit as she filled in, actually broke into tears in front of me. God bless her – may she learn to take care of herself without hardening into indifference. And being a patient in one for more then six months it was inevitable I would see the good, bad, and ugly and often all in the same person. The ones that were consistently good were saints – extraordinary human beings. I could see how conditions heavily influenced care-givers. While some who took care of me should probably consider changing career, some just needed more support and education to improve how they did their job.
I can not imagine, truthfully I do not want to imagine the pain you were in. My first husband was burned by a steam cleaner and it was a small round spot on his leg and his pain was unbearable...No I do not want to imagine your pain and I am so incredibly sorry you had to go through this. I truly hope writing helps set you free.
I am so glad to know you are 8 years out and so sorry to know that you still suffer. Your writing brings the pain so close and clear for those reading. I hope that for you it excises it and lets you move forward, never doubting your bravery, your grace, your humanity, or your voice.
Maria, full of grace, your tale is so harrowing and specific. Can you send this to the hospital?
I do hope you are writing a book. This would be catharsis for you, and a revelation for readers.
@ Lunchlady – writing is setting me free from the suffering I did not even know had lingered within me. It sets me free through the revisitation of the pain. Please do not imagine my pain. Only remember that I survived it and it made me stronger. It is O.K. I am O.K. And thank you for your gentleness.

@ jlsathre I do not suffer. I only have moments of suffering of recollection that are doorways to greater healing should I choose to walk through them. I am figuring out how. Writing is one of the ways, your witnessing with your openness gives that way power, and I thank you for that.

@ Lea I would never send this to the hospital as it is because I feel it it would be unfair. I must first figure out how to tell my side completely while being able to also bring understanding to the other side so that not just the problem is presented but that the bigger, macro, solution is pointed to. Posting this here as it is, amongst the kindness of this community and with dear friends like you, is entirely for my own healing. And as a way of also freeing myself to figure out how to be able to write about this in a way I actually would send to the hospital. In a way that can honor and thank and present problems in a context of understanding. I think that is not only right but will increase the chance of its message being heard by those who need to hear it. You have felt the destination I wish for this. Wish me luck.
Oh god, this was hard to read. I can scarcely imagine your living thru such pain, plus the humiliation and disregard of 'caretakers'. I suppose there's some very good reason they couldn't give you a general anesthetic for the debridement procedure?
PTSD can be no small matter to overcome. When I feel overwhelmed, I tend to get the pen out and write like there's no tomorrow in my journal. If anything, this proves most useful if I need comfort but it's at the wrong time for me to be calling friends or family. It is like my second voice, that pen.
I applaud each effort you are making toward a resolution to this residual pain that is leftover from your ordeal.
Peace and Blessings to you
Rated
Writing through a silence is probably one of the most difficult experiences there is. Because one wants to let something out but it refuses that exorcism. Breaking through is most difficult but extraordinary. Liberating, in some ways.

I think Joanie has said it best.

People whose work is to serve should always remember the power they hold over those who need them. As strange as it seems, we tend to see those who serve as "lowly" but they hold great power, for their ministrations provide health, education, life, even to some extent, happiness. Faith.

I keep repeating the Talmud when I come across situations like this: He who saves a life saves the world entire.

You are a life-teacher, Maria. May we sit in companionable silence and listen and understand your words.

Namaste.
Dear Maria: I am on my second reading of your piece, but I paused before the last quarter, because I had to breathe and let you know now, that I am beyond words to convey my feelings and thoughts. It's your incredible writing that captures such an extraordinary experience and presents it so palpably, expressing every excruciating detail of your pain and your spirit's fight for overcoming.

You say : “. . [You] have many threads to untangle. Threads that go back much further then [your] burn and all the way to the childhood that bred misunderstanding.”

I hope writing this has been healing for you as continue your journey and wish you well. Thank you for sharing your generous heart and your invincible soul, Maria.

♥Rated with love.
This is a brave, intense piece. I like how you play the metaphor of being speechless against the reality of it throughout the piece.
Maria, I am astounded at how you write about this. I can feel the terror and can also feel how you have gained some distance. It's an amazing feat of bravery to have survived and now to revisit it with your words.
Drema
Dear Myriad, Poor Woman, Vanessa, Heidi, FusanA, Caroline, and Drema,
I am out of time for responding to each of your generous comments as much as I would wish to. I read them each with appreciation. I'm hoping I will be able to tomorrow night. But your feedback did inspire me to add on a note at the end of my post which i hope you will read if you return here to see this comment. For now I can only convey my appreciation for you reading and commenting. Thank you.
Maria:
I read your post earlier today. I resisted the urge to respond immediately; I wanted -- needed, actually -- some time to let your words and the experiences they describe to coalesce inside me.

I read your post with a sense of terrified awe. Just when I'd think no human being could be required to suffer any more horrendous pain or dehumanizing treatment than what you describe, you would document another horror, more extreme than the last. I saw my left hand clench at your words, a physical response that surprised me. It was beyond my control. An instinctual response. What the body does to discharge energy it can barely comprehend. A version, I suppose, of the fight-or-flight response. Compelled to read, I wanted to run from your story. And I felt anger flare up in me in response to the way your were treated. Maybe that was the fight-AND-flight response. Though you eloquently describe your experiences, I cannot fathom how you survived the physical pain. And to hear how mechanically you were treated by the people who should have known better took me to the brink of disbelief.

I hope you someday find a way to confront these people. I know you could do it without rancor. These people need to know not just how they treated you at a particular time but how there's every reason to believe they're continuing to behave this destructively today. They could be killing people with their indifference. And while I'm loathe to put the burden on you to tell them, I also think yours is the only voice that might have a chance of penetrating their professional armor. Nobody who's ever been hospitalized needs be reminded of how important nursing care is. Nobody, it would seem, but the people charged with providing that care.

As I said, I hope with all my being I haven't burdened you any further. And I hope -- such a freighted word -- that your generous and brave exploration, your deep-diving into the pain, gives you the relief you deserve.
I celebrate your strength. This is moving and yet, nearly clinical in its descriptive prose. It achieves the balance of dealing with the pain, the suffering and the awful condition of your situation with the cold, analytical indifference to that. Wow.
--r--
No words. Just holding you in my thoughts. Tenderly.
So much of burn care is torturous... and the scars it leaves behind go so much deeper than the disfigured skin... your explicit post captures this with amazing constructs of language. Hoping you continue to progress in every aspect of your recovery.
@ Myriad – Caring for burn patients is very difficult work. The pressures of coping with its difficult demands can easily squeeze out sensitivities in those in whom this is not already a firmly established habit. I wrote from my perspective, but can also empathise with the care givers. In the long run, it helped me that I could.
GA is very hard on the system and carries serious risks of its own – not at all something that can be administered daily. I had almost 20 surgeries while in an induced coma, all requiring GA which probably already taxed my body heavily.

@ Poor Woman – I love journalling – a lifeline to sanity and insight. Thank you, and peace and blessings to you too.

@ Vanessa – I am compelled to write about this experience and it has been a surprise to me that it has bonused me with cathartic healing, it has been a surprise to me that I was even in need of healing. I've always ha such a good attitude I had no idea that there could be parts of me that are independent of my conscious will. I'm getting to know myself better, and to respect the unfolding process that I am a beneficiary of. I do my best to care for the soil and let nature take care of the seeds. Except I don't have much experience “gardening” and am learning as I go.
You really got to the kernal of what I want to address when you wrote of the power that those who serve have over those that need them. This piece here is a vent that demonstrates that but probably leads my sympathetic readers to blame. I would consider it my highest goal to instead leave all my sympathetic readers of my suffering with the focus on their power to help instead. Thank you for identifying this clearly for me. Much respect for the Talmud. Namaste, Vanessa.

@ Heidi – thank you.

@ FusanA – Thank you on so many levels – as a writer, as a subject of this experience, as someone who values you and what you think and feel.

@ Caroline – Thank you.

@ Drema – Thank you very much. It did and does take courage to remain present to what I would rather not. And yet it does not – I can't imagine any other way, if that makes any sense.
@ Jeremiah - Unclench. That is exactly what the purpose of my writing has been for me. To unclench from the fear suffered when my vulnerability was so intense that it registered deeply in my body, unreachable by the rational I kept trying to unsuccessfully lasso it with, but which at least successfully prevented me from investing in my suffering. A rational that knows this - my survival is a miracle made possible by ALL the players in that burn unit. There are people that may not have known how to do the job in the best possible way, but they still did their job to the best of their ability. We are all fallible human beings. A composite of conditions and empowered or limited in direct proportion to our awareness IMO. This voice of appreciative reason helped keep me sane. But the BASIC suffering had no respect for it. I must emphasize that this post if the voice of that suffering, and in its need for release, has not engaged the voice of reason. I feel badly that I have not presented "fairly". Yet I have been brutally honest. I'm till working this out. But I certainly do not want to unclench at the expense of your clenching! And my ultimate goal is to not at all confront, but to empower - to help care givers be aware of and to embrace the power they have to help heal or hurt. I do feel compelled to share for the goal of waking others to what their powers are - because I now know I have a voice that has the ability to reach out. Thank you, dear Jeremiah, for consistently shaping this conviction, and for consistently opening your heart to me.
@ dunniteowl – Wow. I have no idea how to evaluate my own writing objectively. I feared I was way too “indulgent”. It surprises me you found it nearly clinical and have no idea why I find that reassuring. Thank you for your feedback.

@ j.h. Robbins – Thank you, sincerely.

@ jmac1949 – You said it. And deeper even then the disfigured skin. Very few people understand what scarring even means, mistaking it for the superficial ugliness that is usually not the worst of its challenges. Thank you for your generous feedback on the writing and your empathy for the experience which I hope was not borne of intimate suffering.
THIS POST HAS RECEIVED A READERS’ PICK AWARD
A stunning piece giving your thoughts the voice to be heard. This piece will reside in my thoughts each day, reminding me of untapped kindnesses I must release.
I lovvve you, Maria. I could dance in a circle with you and Mark and Deb and my girls, heck, once a month; wordless, dizzy, happy right and good.

Let me nod emphatically at Leas's advice. Your book will be a iigament of love in a lost world.

As a writer you earn the right to say this, and so bluntly:

"Not even to press a freaking call button"

"I did not even have the one tool babies have to call attention to their needs - to cry."

You were always a firecracker, Maria, and you now share your best and truest accomplishment, of right life: you are still the best you always were. Everyone sees you, all the way through your story, with this and the complete version to come. And it is redeeming the way you express the truth here, the gritted sea of pain and helplessness. We who watched you struggle to stay ahead and on top, or relax deeply into the insistent reality, we were grateful every night for the skilled staff and good drugs and equipment and methods/ Again and again we saw how magnificently you ran with the whole program of getting Maria independent again.

I am sobered to read of your night anxiety. Talk to yourself! Why not you? You're a decent chap!

THIS:

"It doesn't take long before I can return to bed restored to some semblance of centre, where my bed is just my bed and no longer a narrow, constricting coffin, and I can stretch to antidote my contractures as proof they will not strangle me, and breath deeply as proof I am not drowning."

and other lines her are some of the finest writing I have ever read.

Not just the grit. Your truth, in this and in your comments, proves how beautiful a life can be, at least for we who read you. You are what Doren Weber expressed as "filled with wonder at the unfolding and eternal splendor of life"
@ Greg - dear friend - you were a witness to my experience in real time. More then a witness, you played a key role for me - an anchor, a buoy, a life saver. Your presence helped reassure me of my sanity and helped me survive the madness. Your love fed my will to live, reminded me of the goodness in the world through yours, at a time when that reminder had huge bang for buck. So I have many reasons to say I love you too, and any time you want a jig I'm coming over to join your good circle to celebrate! It is amazing, the roles you have played in my life over the years, all good, all I am so grateful for.
Praise for my writing from you is very high praise. I so hope to pull off writing at least the first 7 months of my burn experience, and to coming to you with the first copy of it in print.
My first comment is a bit of a mess. Wrote it just before passing out. As my earnest outpouring I leave it, typos and all. "ligament of love" was the intended, a necessary intrinsic part, and you are, Maria, as necessary as one human being can be, to all who know you.

"No one would dream of trying to have a conversation with someone in flames" and all of the last section, the excruciating parsing out of who and what and how, and the specificity you have here, is first-rate writing. You bring clarity to what actually happened, and bring us inside with you, tracking the moments and events. A remarkable essay, too, in how you never lose track -- and so neither do we -- of what is observation, what is response, what is later processing enhancing your improved ability to describe and understand. Might not seem like so much, but that's a special gift. We never lose sight of you, your inside-out perspectives, in spite of a dizzying set of facts and wrenching emotions.

I think you should write a new or select an older piece and read it, on camera, like I did recently with "Found" on my OS blog. So everyone can see the qualities you have: the plain old human Maria, and the remarkably alert and compassionate You we lucky ones know and cherish.

Very few works compare to this, and I expect even more so in its ultimate form as a book. Doren Weber's book about his son, and a handful of others, go where you go here. Some are more visceral, or sentimental, but your work is first-person. You make the horror and persistence of suffering completely present, and yet your coherency, your personal completeness, permits the reader to transcend the events, for a greater understanding and connection. Not just with you, but all who go through catastrophe. The work will do Great Good, for patients, caregivers, and all readers.
I have just learned so much of compassion from you, Maria. Thank you. & am so sorry for what you had to endure.
@ Trilogy - Your comment was very meaningful to me. My greatest wish in sharing the difficult part of my experience is to help awaken the need for greater compassion. FEAR was more for me, written to unbind me so I could eventually hope to accomplish that goal. I had not expected it to be read much at all. And while I am very encouraged that it is, and has impact, knowing that it has left some kind readers with anger and blame shows me that I need to modify the way I express this experience to meet my ultimate goal. Knowing that it has also deepened compassion in others encourages me that I'm heading in the right direction. Thank you Trilogy.
To my darling Maria. Some day I will have the words to describe my feelings about this piece. I remember the things you describe; the voicelessness, the introduction of speech into the dreary silence of that hospital box... the slow struggle to crawl back to life. And as I am reminded of those times and the journey since I can only say that I am amazed by you daily. You are the toughest most stubborn sweetie-pie - and a damn good writer as well. It is my privilege to know you to and to share a life with you. I leave the unbiased OS readers to comment on the amazing quality of your writing... for me, I am just speechless with pride.

Mark