Inspiration Fail

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Sitting on my son’s lift recliner the other day, a heating pad on my lower back because I had pulled or twisted something doing nothing I could remember; wrapped in a hospital blanket, the thin sheet kind that is not too heavy but weirdly comforting maybe just for me because I had spent so many nights wrapped in them in the hospital rooms on different cots while the professionals took care of both me and my son, and unearthly responsibilities had not quite yet settled on my bare shoulders; cotton in my right ear because of some strange infection that I keep meaning to have checked out tomorrow, except tomorrow never gets here; my hair mussed; my clothes a splattered work of art from whatever I had served or cleaned, both human and K9, earlier that day; a box of tissues within reach;  extra-large dropping white socks covering my feet, when the doorbell rang.

Really? My friend said to me after just one glance.  Really?  I feel like I’m visiting my grandmother in a nursing home.

Not sure whether to laugh or cry, I did both.  I don’t feel well, I said.  I’m so tired.  My voice came out much whinier than intended, which made me laugh and cry even harder.

Relentless, knowing I needed to laugh more than cry, my friend kept firing at me. Old lady jokes, the ludicrousness of what I looked like, the difference between me now and me then, offering soft foods, lotions and Jean Nate, until my tears stopped and the laughter hurt.

And my gratitude for having that one person in my life who doesn’t tell me how inspiring I am; who doesn’t view me as super woman; who knows that miracle dust and angels do not actually dance above my shoulders and hearts of love and laughter do not float like bubbles throughout my house;  who knows how often I fail and continually picks me up from ground level so I can fight the next battle; who can see me at my worst and not judge but just point out the absurdity of the situation; who lets me feel sorry for myself, but only to a point; who, at the last moment, steps in front of me to block my nose dive into oblivion by kicking me in the ass to keep going….my gratitude is beyond measure.

I do not ever feel like the inspiration I hear so often that I am, and it is nice to have someone recognize that I am often struggling, unsure, exhausted.  That I am merely surviving.

“You’re such an inspiration” takes everything I do, every moment I suffer, I cry or I laugh and wraps it all up in pretty paper with a silk bow.  And makes it less ugly.  Less real.  Even though it places me on a pedestal of sorts, a pedestal of words, I actually feel I am condensed, marginalized, defined by my role.  And I feel as if I don’t rise every day, I am failing.

Most days, I’d prefer my heating pad and my hospital blanket to being someone else’s inspiration.  I’d prefer to be made fun of for failing than feel weighted down and stressed out by the added responsibility of pretending to be supermom.  It’s just so much easier to cope that way.

I wonder if I could get a senior discount.

 

The Burden of Fear

Why are your braces on the outside of your pants, I asked him when he drove himself into the garage onto the wheelchair lift. Why aren’t they underneath?

That’s how he put them on, he told me. He put them on over my pants.

Oh. Do you like them like that? Are they more comfortable?

No. Not at all. I prefer them the other way.

Why didn’t you say something? Why didn’t you tell him?

Because I can’t move. And I need him to take care of me. And I don’t want to get him mad.

I felt punched in the gut. Stabbed in the heart. All the clichés swooped down on me at once. I knelt on the floor next to him and said, You’re the boss. We are here for you, to make you comfortable. It’s your body. It’s your life. You need to tell us if something is wrong. You are in control of your body.

Even if I can’t move, he asked me? Even when I depend on everyone else?

Especially because you can’t move. We are your arms and your legs, but you are the brain, what controls our actions. Unless it is bad for your health, we will do whatever you ask. You cannot be afraid to ask.

Are you afraid to ask me, too? I asked him. Are you afraid to tell me to do something a different way or not at all? No he answered. Never.

But I wonder. I wonder if that’s true. He depends on me more than anyone. He depends on me for his every basic need. I know he’s not hesitant to ask for something, even two or three things at once, but I wonder if he’s nervous to ask me to not do something or to change the way I do something.

I saw him slightly wince yesterday, while I was getting him dressed. After I was finished, he said to me, you hurt me a little before, getting on my pants. Why didn’t you tell me? I asked him. Right there and then, why didn’t you tell me so I could know exactly what I did wrong and never do it again? It’s ok, he said. It doesn’t hurt much now. I didn’t want to make you feel bad, he said.

He didn’t want to make me feel bad for hurting him.

I felt that familiar anger bubbling to the surface. Followed by hate. For the circumstances that got him here. For the current situation. For the people along the way who made him feel as though he may be a burden.

For the overnight aide who complained that she had to get off her ass and off her phone and walk into his room each time he called because he couldn’t get comfortable himself, because he needed her to adjust his pillows or fix his legs or rub his ankles.

This had better be the last time you call me, she said to him that night. I’m done coming in here. I will call your mother down and she’ll be very angry.

She’s right. I would have been furious. But not with him. Never with him. When he told me the next day what happened, I made sure she didn’t come back again. It’s your job, I said to her. It’s why you’re here overnight, getting paid. If he calls you 50 times an hour you need to tend to him 50 times an hour. How is he going to get comfortable by himself with only one arm that works? He depends on you.

He can’t toss and turn. He can’t adjust his head pillow. He can’t do the things everyone else does in order to find that place, that comfortable place where sleep eventually comes. He can’t go to the bathroom without calling someone. He can’t pick up something that falls. He can’t survive without help.

What can it be like not to be able to move? Not to be able to do anything independently? To lie in the dark at night hoping someone is at the other end of the monitor, awake, in case he needs to pee, to move, to vomit, to scratch an itch, to turn over. Sometimes I think he calls excessively at night while heading off to slumber just to make sure someone is there. To make sure they hear him. Because he’s scared. He’s scared no one will answer.

Behind that smile, that good nature, that humor, are real fears of being alone. Of being a burden. Of being afraid to upset the caregivers lest the caregivers stop caring. Even the caregivers that he knows love him unconditionally and forever.

 

Monitoring Hope

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My son, Damon, lay in the hospital bed, his body sometimes relaxed as if in a deep sleep and other times so stiff and toned from the storming and seizures in his brain that it looked as if he were elevated off the bed.  A trickle of blood had puddled and dried inside his ear.   He was bandaged loosely over the flap of skin where the large piece of his skull had been removed, and some blood had seeped through the layers of the bandage. He didn’t have another scratch on his face or his body.  No broken bones.  No bruises.  Just a broken brain inside a fractured skull.  Just.

Tubes had been shoved down his throat, tubes that connected to a ventilator, the white machine that breathed for him.  “Doesn’t that hurt him?” I questioned the nurse with the short dark hair and the huge gold hooped earrings.  “He’s going to gag when he wakes up.”  I tried to swallow my panic, clenching my thumbs inside my fists.  I tried to breathe.

“He isn’t responding,” was her sharp answer. “He can’t feel anything.”

My questions were obviously not welcomed. The ICU nurses had a job to do, specifically, to keep their patients from dying.  I’m sure we were in the way.  But I didn’t know what to do or how to act or what to ask or what to say or where to put myself.  This was my son and  I didn’t know how to help him.  When will he wake up?  When can he go home? I was totally out of my realm. Not able to make anything out of the chaos around me.  I knew nothing of hospitals or ICU’s or brain injuries or comas. I knew Band-Aids and how to kiss the boo-boo to make it better. I stepped back.  I sat down.  I stood up. I watched. I got in the way.  I apologized. And then repeated the same actions.

IV fluids and medicines dripped through tubes in his right arm; and his left arm and chest were hooked up to heart, blood pressure, respiratory, and oxygen monitors.  His temperature was constantly being recorded rectally, adding even more insult to his seventeen-year-old body.  And he had a needle-like probe sticking into his head to monitor the pressure in his brain.  This monitor was the most important one, the male nurse told me.  The only nurse, in those beginning days that took the time to explain, to ask if I needed anything for me, to offer water or an ear for concerns. He was new to the ICU.  In training, under the not kind watch of gold hooped-earring nurse.  Too much pressure inside his injured brain, too much fluid buildup, and he could stroke, he said.

Teams of medical professionals took turns appearing and disappearing in and out of the room, heels clicking on the cold floor.  No one acknowledged our presence except to tell us to step out of the room when they had to re-position him or change his bedding. No one reported to us.  I stared at these strangers whose responsibility it was to keep my son alive and tried to listen in on their conversations. My eyes darted back and forth between each person, searching faces, dissecting medical jargon, trying to figure out on my own what the hell was going on, what they were thinking, and if I even trusted them, if they were qualified.

Each team performed the same tests on Damon, sometimes within minutes of each other, never coordinating with each other, or maybe not trusting each other’s results.  ICU team, neurosurgeon team, nurses going on and off shifts.  “Who’s in charge?” I asked one of the neurosurgeons.  “No one person seems to be in charge.  One team doesn’t seem to know what the other team is doing. You walk in and prescribe one thing and then the ICU doctor prescribes the opposite. Who is in charge?”  Tempers flared. At me.  I learned quickly that being questioned or asking for the hows and whys was a thing they were not used to and could hardly tolerate.

So each team performed the same testing. Sometimes five or six times each day.  We never referred to it then as testing, however.  We referred to it as torture.  Sickening torture. I wanted to vomit.

They pinched his arms.  They pinched his thighs. They jabbed picks under his toenails and on the bottoms of his feet. They screamed his name to startle him and they flashed light in his eyes.  The first time they did this in front of us I had to grab my husband and hold him back from flinging himself across Damon’s bed onto the resident standing on the other side.  “What are you doing?” he screamed.  “What are you doing to my son?”

Damon didn’t move. His pupils reacted slightly to the light — “sluggish” was the word they wrote in his charts– but little else. “No response.”  I watched it all in a nauseated, silent horror, wondering how much pain my son was silently enduring.  Wondering why their methods were so barbaric.  Wondering what kind of sick fucks would inflict pain on someone obviously suffering so much.  I hoped he didn’t feel it, but I prayed he did.

In between the torment and the re-positioning, and any other tests I didn’t understand, I stood at Damon’s bedside, holding his hands, rubbing his arms or his forehead or any space I could find free of tubes and wires.  I talked softly to him, repeating the same thing over and over again, in case he was awake somewhere deep inside his head, “Damon, you’re in a hospital.  You had an accident. You have a bump on your head.   You have something in your mouth to help you breathe.  You’re going to be okay.  We’re all here, and we love you so much.”  Over and over again I repeated those same words, day in and out, just in case that next minute was the minute he awakened. I didn’t want him to be scared. I didn’t want him to panic.

I put headphones on his head and played anything I could think of playing that might cause a reaction, a flicker of movement, any type of response, whatsoever. Never, not even for one second, did I believe he could not hear.  No matter how deep he was inside his mind, or how close his soul was to leaving this world, I always believed he could hear, that he was “in there” (1).

The surgeon who had operated on Damon, ultimately saving his life, was called out of town the day after Damon’s surgery for a family emergency and was gone from the hospital for about a week.  A few days later, the on-call neurosurgeon on his afternoon rounds took us into the waiting room to answer our questions, because we refused to let anyone talk about his prognosis in front of Damon.  How much damage?  “Look at him,” he said brusquely.  “What do YOU think?  He’s not waking up. The damage in his brain stem is severe.”

He told us that he was very surprised his colleague had even bothered to operate at all on Damon when Damon was brought in, in the condition he was because, “We aren’t usually in the habit of operating merely to create vegetables.”

He told us all of this without having yet performed an MRI.

I fell to the floor wailing, heaving sobs, and curled up in a fetal position.  How could we begin to hope when the doctors had no hope?  What was there to hold on to? Searing pain shot across my entire being and that was the only time I looked over the edge into the darkness of the total loss of my son.  It was the only time I almost gave up on Damon and gave into that darkness.

What do we do now, I moaned to my husband, to my daughter, to God, all three of them witnesses to the doctor’s abhorrent remarks.  What are we supposed to do now?  And my husband, completely rattled by my sudden loss of control, scared to death himself, got down on the floor next to me in tears and said, “Karen, we need to pray more.  We need to keep hoping and praying.”

I shot back at him, my voice shrill with panic and a creeping anger, “I don’t know how to pray. I don’t know how to fucking pray.”

I managed to get up off the floor, needing to be by my boy, needing to touch his face, his hands, to smooth his eyebrows. I left that waiting room and I walked back into Damon’s room, tears pouring down my face, and I sat next to his head and I demanded forcefully, almost angrily, in his ear, “Damon, you have to fight for me.  You need to fight.  Don’t do this to me, Damon.  I need you.  I need you to come back to me.”

My eyes flew open in terror as all the bells and alarms on all the monitors immediately began blaring.  His heart rate shot up.  His respiratory rate shot up. His pressures shot up in his blood and in his brain.  All the rates on the monitors were way too high, well over their acceptable limits.  My best friend,  who had been visiting in the room with Damon; a four-year RN who previously worked almost exclusively with trauma patients, froze, staring at the bed, staring at me, believing the worst, believing I had killed Damon with my words.

The nurses flew into the room in a frenzy and kicked me out, and they did whatever it is they do, and once they had everything under control tuned to me as I hovered, wringing my hands and shaking outside the glass of the room, and chastised me for overstimulating him.  “You are causing his pressures to rise,” the female nurse with the huge gold-hooped earrings spewed. “He could have had a stroke.  You need to stop talking to him.”

At first I said nothing but apologized. I was engulfed  in anguish and dread at what had just happened, at what I could have caused to happen. But as I thought more and more about it, I slowly began to concentrate not on what might have occurred, but on what actually had transpired.

I stood up from my corner in the room where I had retreated to lick my wounds, and right then had my first taste of the power inside me, the courage I’ve relied upon every day since then, the ferocity of a mama bear with a wounded cub. I walked over to the nurses’ station, looked the nurse  in the eye and I said with as much confidence as I could muster with my heart still pounding out of my chest, “How can you tell me I’m overstimulating him by talking to him when you tell me he doesn’t respond to anything?  And how can you tell me he doesn’t respond to anything when he clearly responded to me?”

She said nothing.

On that day, for the first time since we received the phone call that Damon had been in an accident, I tasted hope.  I believed my son was “in there”, and that he heard me, and he wouldn’t dare not listen to his mother. I realized it would be up to me, as his mom, to bring him back, because I knew him best, far better than any doctor or nurse or monitor.  On that day I decided that I would not just sit back and put Damon in God’s hands and allow Him to determine if Damon would live or die. I would fight like hell to keep my son.

What saved Damon ultimately was my ignorance.  My lack of knowledge of the severity of the situation allowed me to hope without restraint and refuse to give up regardless of what we were told on each step along the way.  My refusal to believe what I didn’t want to believe and my willingness or my need to only believe in Damon saved his spirit and his soul and eventually brought him back to us.

I never found out until months later, late at night, in another hospital room two hours from home, when I finally decided to Google brain shearing, and axle tears, and traumatic brain injury, that there is no full recovery.

But by then it was too late.  It was too late to stop believing in Damon.

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(1) “In there.”  A common expression of hope describing the prognosis of a brain injured patient.  A patient, like Damon, whose open eyes are not seeing, just staring; who doesn’t respond to commands; who doesn’t respond to much of anything at all is usually considered brain dead or “not in there”.

To me, “in there” was a place behind some secret locked doorway inside Damon’s head where Damon’s soul, what made Damon, Damon, was hiding.    We’d peer into his eyes, trying to see deeper, past his irises, through his pupils, to that secret place to see if Damon was actually “in there”.  We searched and searched for the right key, the right memory, the right song to sing, or joke to make to unlock his door.  In my thoughts, once the door opened Damon would come tumbling out of “there” and no longer be trapped inside his mind, “in there”.  He’d be free. He’d be Damon.  He’d be whole.

Inspiration Porn

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A year and a half after his accident, Damon graduated from high school with his class.  The standing-room-only auditorium was on its feet, cheering, clapping, crying as he, with much help, rose from his wheelchair and  took a step with his right foot toward his diploma.  His dad and a therapist physically moved Damon’s left foot for him, and advanced the high walker which held much of Damon’s body weight.  Damon stepped again, shakily, awkwardly with the right and again the left was physically moved for him.  Cameras flashed.  The local news station took video for the 10:00 pm news.  Air horns, not permitted on the stage, blasted from the stage as fellow students led the cheering for their classmate.   Monumental.  Miraculous.  The brain-injured boy who was never supposed to survive, who, if he happened to survive, was never supposed to be more than a vegetable, had just stepped up to receive his diploma.

What are your goals, he was often asked in interviews, both before and after the graduation.  Where is your focus?  I want to walk was always his answer.  For the six months prior to the graduation ceremony, Damon practiced his graduation “walk” at physical therapy and at home.  For the three years after, as well.  His team’s (all of us) main focus was in moving his legs, so much so that many other aspects of his treatments were neglected.  We pushed him to walk at each therapy.  His therapists wanted him to walk.  He wanted to walk.

Recently, a few friends sent me a video of another boy, at another graduation, who stood up from his wheelchair to walk, with assistance from someone we can only guess to be a relative or a therapist or a girlfriend, across the stage to receive his diploma.  I don’t know the backdrop to this guy’s story….but I decided it had to be similar.  Maybe brain injury.  Another huge accomplishment.  My eyes filled.

But then, another friend directed me to a disability Facebook page where disabled members, their family, friends, and supporters were showing disgust toward this same video and the abled-bodied community’s reaction to the video, calling it inspiration porn.  “Karen, help me out here,” my friend said.  He was arguing with the members who were not hailing this as an accomplishment.  How could they not see that?  Why were they condemning this?

“What is inspiration porn?”  I asked almost with ridicule.  “He rose from his chair to walk! How can you condemn something without knowing the full story?  You don’t know if he’s brain injured or has a debilitating disease, if he is becoming better or getting worse.  It’s amazing that he’s attempting to walk.”

“What’s wrong with receiving a diploma in a wheelchair?” another member asked me. “He makes it seem as though there is something wrong with being in a wheelchair.”

“That’s not the point,” I answered from my fully able-bodied perch. “What’s wrong with him trying to walk?”

“They are cheering for the steps he’s taking, not the diploma he’s receiving,” said another.

I was angry, defensive, my claws were out.  “YOU DON’T KNOW WHAT HE OVERCAME,” I typed, in all caps. “YOU HAVE NO RIGHT TO JUDGE.”

“Look how loud Karen is,” one man typed, referencing my capital letters. “Let’s all be loud like Karen.”

“What’s to overcome?” said another.

I did not understand.  And I could not understand, because I am not disabled.

Inspiration porn, they explained, is the able-bodied-public’s goo-ing and gushing over only a disabled person’s “normal” physical and sometimes normal every-day accomplishments, while neglecting everything else.  What an inspiration, we say, that he took a step! What an inspiration that he stood on his own!  Let’s record it and put it on social media!  Let’s get a million “likes”! (Ouch.  I’ve done this with Damon. I paid more attention.)

“I achieved 3 graduate degrees after my spinal cord injury,” said a third wheelchair-bound-man, “and what do people concentrate on?  My physical therapy and how inspiring it is to see me working so hard to try to regain what I physically lost.  The inspiration is in my achievements after my accident,” the man tried to explain to me. “I earned 3 degrees, I married, I had a child.  But, ‘ooo what an inspiration’ that I am working out trying to become more physically ‘normal’.”

I stopped talking.  I switched my caps off.  I started listening.  Somewhere around this point in the conversation I had an *ahhhhh* moment.  I’ll never fully get it but I think I somewhat got part of it right then and there.  Was I pushing Damon more toward physical goals I have for him than toward life goals….. the wrong goals and perhaps toward failure?

I back pedaled a bit and said, at my son’s graduation we celebrated his life. We celebrated his return to school.  We celebrated that we were told he would not be much of anything, but there he was taking a few right-footed steps on stage.  Everyone cheered the moment his name was called.

But they cheered louder when he stood.  And louder after that when his right foot stepped.

Inspiration porn?

Shouldn’t it have been enough for us and for Damon that he was on stage with his classmates…..that he received his diploma that year?  Were we wrong to take it a few steps further, with his right foot?  We all appealed to the able-bodied bar for achievement at that minute, the able-bodied focus of physical healing as the all-important goal. It made the 10:00 o’clock, the 11:00 o’clock and the next day’s news. Would it have, if he was wheeled across the stage?

Please, before anyone argues, of course we are inspired by his will to live and his fight to come back to us and the miracle that is him….but at that moment…at that moment… we all cheered because he took a step, didn’t we?

What’s wrong with cheering that?  I cannot and will not speak for any other disabled person’s situation.  But in Damon’s case, I will offer this:

On that particular date, those who knew his story (most of the audience) were very touched and very excited and very emotional. His accident, trauma and recovery had all been made very public (by me) and everyone felt involved, and we cheered and cried and Damon had his moment. He wasn’t supposed to ever recover anything, and here he was. And it was awesome. Because we all knew the story. But when the videos were played to a larger audience, on TV, on social media…to an audience who just saw a disabled boy rise from a wheelchair to collect his diploma after a few steps and the crowd going crazy, he was diminished to an inspiration only because he walked, not because he lived and fought and went back to school. No one else knew his story. So that’s where this turns from that emotional moment to that inspirational porn. Disabled boy walks. That’s where the disabled community has the issues, I think. Because so many see the walk and not the full story.

Should Damon’s ultimate goal be to walk? Or, while never giving up trying to become physically stronger or trying to reach that walking accomplishment, should his ultimate goal be wheeling toward a future of independence, a job, a life defined as successful outside the framework of physical ability?  Can Damon have a full and satisfying life if he never walks?  If he’s unable to ever walk again, I sure as hell hope so.

Damon is surrounded by only abled-bodies.  I really need to rethink this. Maybe he should hang with some successful disabled buddies….girls and guys.  At first I said no, Damon’s friends are friends he hung out with before his accident (even though the majority don’t stop by much any more); will he feel weird hanging out with disabled people?  Was I projecting my own feelings onto him?  I feel queasy with my own thoughts.

In that *ahhhh* moment I realized that going forward I can’t be the one to teach him how to be successful with a disability because I, myself, don’t have a clue. And neither do the therapists or the doctors or the case workers who are not disabled themselves.  We, the able-bodied, are biased toward normal every day physicality(s) as achievements.   So I need to find the right people to show him the right way.

I need his focus to first and foremost be on his future.  A happy, fulfilling life.  I need to rethink our treatment plans and the words I use toward him and in front of him.  I always tell people Damon will walk again, and I truly do believe that.  And I’ll never give up on believing that.  But perhaps walking should not be the goal.  Maybe it’s a tool.  A huge tool in my able-bodied mind, but just a tool.  And many successful disabled people have risen above having to use that tool.  And that is what is inspiring.  Not just rising up to walk.  Rising up while not being able to walk or while relearning to walk.

Damon has been told he is already an inspiration for so much for so many.  It’s a word I hate, but a word he likes to hear.  He’s an inspiration for his fight and his will and waking up with a smile every day.  He’s an inspiration for having graduated high school and having gone to a few college classes.  He’s an inspiration for his steps toward his goals, if not the steps, themselves.  I know he can he be an inspiration for those that follow in his brain injury journey.

I will applaud his every accomplishment, whether it’s a test score or learning to bridge his back so getting his pants on is easier. He could have given up and he didn’t.  He’s watched his friends go on with their lives, easily, while he works so hard to maintain the status quo. I can’t apologize that for me he’s my hero in my everyday life.    But I  get what they are saying.

I privately wrote to one of the men in that debate on that Facebook page and thanked him for taking the time to explain to me his idea of inspiration porn and helping me see through his eyes what I’m unable to see through my own.  I heard him.  I’m not pretending I understand totally.  I still envision the same beautiful and happy future for Damon.  But I see a different picture now.  And maybe a different path.  And maybe a different vehicle on that path.

March is Brain Injury Awareness Month. Please spread some love.