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.
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.
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.
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.
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!