Pretending Life

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“We spend a lot of our days pretending,” he wrote to me, in response to my questions regarding his daughter’s unrecoverable traumatic brain injury.
“You know how that is.”

He didn’t know me, but he knew me. Better than I knew me.

I felt my sharp intake of breath, as though my mask had been ripped off, and I watched, frozen, as my well-built facade cracked and then crumbled into pieces on the floor around me, until I was totally exposed, totally vulnerable to the one person I’ve pretended to the most for the past five years. The most important person from whom I’ve hidden every emotion, every lost hope, every broken dream, every frustration, and every heartache.

Me.

“Yes, you know how that is, don’t you?” I asked myself not without anger. I tried to be honest with myself for a split second, before I began to quickly rebuild that facade, brick by brick.

I spend much of my days pretending that caring for someone 24 hours a day is normal. That my son will find his abilities just around the corner. That all is always well. That others actually care and it’s just today they are not showing up, physically or emotionally; surely they will be here tomorrow.

I pretend that I am not exhausted. That my daddy did not die. That my mom is well.
I pretend that I am happy and present.

I pretend that each punch from the universe just makes me stronger and each knife in my heart makes me care more.

I pretend that as we are on our way out the door, on time, an “oops, Mom, I need a change” is just part of everyone’s normal day with their typical 22-year-old, requiring a complete change of clothes, after a transfer back to bed from wheelchair, to remove shoes and braces and all clothes and then having to reverse the entire procedure until he is back on his wheelchair, ready again to leave, now 20 minutes late for that appointment.

I pretend that your “God only gives us what we can handle” or “God has a plan” doesn’t  make me want to shake you and scream uncontrollably.

I pretend those little pills I take to help me sleep at night actually do help me relax and that I bounce out of bed at 6:15 am, eager and happy to face the world, on yet another groundhog day.

And no, your oils and aromatherapy and herbs will not help me with this “stress”. I pretend to be sweet when I say no, thanks.

I pretend that you do not judge me or my daughters, because I pretend you know better, are able to comprehend what we have all endured, or endure,  even without trying on our shoes, let alone taking a few steps in them.

I smile. I laugh. I have a sense of humor that allows me to poke fun at me. I also have a vault inside my head where I store all the grief and pain and a massive cover-up as to my reality.

“Who are you most afraid of?” I was asked the other day over a delicious Starbucks latte, decaf with nonfat milk…a hint of vanilla, pretending to fit into this chic setting, as I broke down explaining my pretense, my sadness, my fear of being “found out”.

“Me,” I replied, not even shocking myself at my answer. “I’m most afraid of becoming vulnerable to me. I’m afraid of the vault exploding with that last weight I try to shove inside and then what will become of me or Damon or the girls? Who will hold up our fort?”

Maybe you need professional help.

Maybe I do. But I’m terrified to face the contents of that vault. Terrified of the realities. The what-ifs the what-if-it-nevers.

In the first few days when they told me my son would die, or be in nothing more than a vegetative state in the best case scenario, I refused to look over that edge into their darkness, not because I was strong, but because I knew I was too weak to face their reality. So I pretended they were wrong. I pretended he’d get well again. I pretended I knew best.

I still pretend to be strong.  I pretend a cure is right around the corner. I pretend that your actions or words or a dire prognosis doesn’t hurt me.  I pretend that all of our lives are absolutely fine, and the aftershocks that just don’t stop, don’t exist.

It’s just easier to pretend, isn’t it?  As long as the vault stays sealed.

“You know how it is.”

In Response to Another Heartbroken Mother

 

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Photo credit http://www.thehopeline.com

No it’s not fair. It’s not what you wanted. It’s not how your life should be. You ache all the time. Physically and emotionally. And the pain never goes away. People are there for you at first, but they go on with their own lives because of course they can, and that’s ok, but it hurts when they forget you and it hurts worse when they judge you later…your decisions and your choices…. from their pedestal of normalcy.

No matter how close they once were to you, even family members, they will never fathom your life and how affected you are by the day to day to day, and they will never see that your smile has dimmed and your heart always hurts. They will judge you as though you are the same you, the you you once were, or judge you as if they were in your shoes – which they are not because they cannot even imagine the horror and the hope, and God willing, never will. They convince themselves that you are the same, but you are changed and they are not.   How dare they judge the you who you are now?  The you who is crumbing inside. How dare they question your behavior in a life for which nobody is ever equipped to handle?

You smile and say I’m fine because you don’t want to burden them with the burden you live.  And they accept that you are fine because you say so and they don’t question your fineness because then they may have to deal with it, so they think of you as fine.  And by thinking of you as fine they feel the right to judge you as if you were fine, so they make no provisions for the you who is not at all fine.  They give you no leeway, instead they walk away and talk away and stop calling because you are no longer fun or interesting or the life of the party.

And you hurt more and feel more and think more.  You see hate and unkindness and it affects you more deeply because you live day to day with the reminder of the fragility of life. Their actions stab you in a heart that’s already broken.  A heart that’s already bitter.  Their stabs, although pinpricks compared to the original slashing, renew your pain and remind you all over again that your life is so different and not at all what you expected it to be.

But you will meet others.  You meet others who feel, who didn’t know you then and can accept you now. You now being the only you they’ll ever know.  So many will lift you up and make you laugh and will truly want to know the you behind the mask of “I’m fine”.  You will see the good of humanity as in the time the small white guy and the large black guy took it completely upon themselves, not knowing you or each other, and stopped the flow of mob traffic leaving the concert, so your child could exit in his wheelchair, the littler guy ahead tapping shoulders to move out of the way, the bigger one clearing the path right in front of you, making you feel like a running back with the best blockers in the business.  You will feel the smiles of humanity when someone takes the time to stop you and ask for your story, not afraid to hear the truth, and then hugs you because no words are ever enough.  You will feel the good as you’ve never know it to exist. And this is what you need to concentrate on.  What you need to believe in.

The goodness. The light.  The hope.  And the love.  Especially the love.  It still exists in your new world, but to see it you need to feel it, you need to open yourself up to it and try to dilute the bitterness of how you feel, of what you feel.  You need to let go of that other life, hard as it is, because that other life is nothing more than a memory and no longer can exist for you.  You need to let go of the people who let go of you and let go of the old dreams and the old plans for a future that has drastically changed.  You need to somehow accept.  To somehow move on.  To somehow move forward and create new dreams and a new life and look at a new future.  You need to make the new future sweet and beautiful and, although different, not any less.

You need to believe that you can still be happy in your new sadness.  You can find laughter while in pain and you can find love within the heartbreak.  Take one small step today toward something, anything, that makes you feel better.  It will take you many steps and many days and many months and maybe years to reach a new happy, but if you look for it, and walk toward it, it will be there.

No.  It’s not fair that you need to reconstruct and recreate your dreams.  But it’s possible.  And that’s what matters.

You’ll be fine.

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.

Angels, Hope and Bagels

 

We were by the bagels.  I was pulling out the wheat kind from the bin, the waxy sheet of paper in my hand, and placing them, two at a time, in the paper bag.  Damon was a few feet away in his wheelchair, playing on his phone.  He was excited this morning when I told him we had no plans for the day, except for a haircut, that it was his day to choose whatever he wanted to do.   The world was his oyster today and where did my son choose to go? Wegmans Market.  Seriously, I asked him.  Wegmans?  For their Chinese food buffet, was his answer.  We enjoyed our lunch there, and decided to do some grocery shopping, starting with that bagel aisle. And that’s when I heard the voice say, “Are you Damon?”

This isn’t unusual for us.  It’s actually quite common.  Wherever we go, Damon is spotted by someone who either follows us on Facebook, has read about him in the newspaper or knows someone who knows someone who knows him.  I wistfully joke that I only ride his coattails of fame, but I absolutely love when someone stops him because Damon loves nothing more than to meet new people, or meet people in person he’s talked to online.

It usually goes something like this: “Hi Damon, I’m Mary.”

“Hi Mary.  What’s your last name?”

“Brown.”

“Mary Brown.  What’s your middle name?”

“Ann.”

“Mary Ann Brown.  What’s your maiden name?”  And then that’s repeated as well.  Repeated and locked in the steel vault that is his new mind, to be taken out the next time he sees that same person, whether it be the next day or the next year.  I swear his memory is better now than before his accident, as though he has accessed some previously unused part of his brain. Names of people I’ve long forgotten come so easily to him.

Sometimes, after meeting someone for the first time, Damon will immediately log in to his Facebook account to look that person up and send him or her a friend request.  Other times he may talk a little more and answer their questions or ask a few of his own.

“How are you, Damon?  You look great!”

“I am great!   You look pretty good yourself!”

Unless, of course, you’re Luke Bryan, backstage at his own concert.  “Hey, Luke,” Damon greeted him first, in the meet and greet line last summer.  “How you doin’?”

Damon always has a smile on his face.  He always is very pleasant to talk to.  And people just love conversing with him.  I call him The Mayor.

I was expecting the same type of thing today when I heard that voice say, “Are you Damon?”  I turned to see who had approached my son, and the bag of whole wheat bagels almost fell from my hand.

I hadn’t seen her in a little over four years, although I’d thought about her often.  I never had a way to contact her.  I spoke of her in the speeches and presentations I gave on brain injury, at schools and hospitals.  She was my first angel here on earth after Damon’s accident.   At my lowest point, she had been a light in my darkness.  The only hope in my crashing world.

She worked on the floor in the intensive care unit and she came into our room sometimes two or three times a day, every week day during the five weeks we were there.  She is a tiny thing, not weighing much more than 90 pounds and stands no taller than 5 feet high.  But she had a strength within her that was immeasurable.  A strength in her faith and in her beliefs.

She wasn’t a doctor or a nurse or even any part of the medical staff.  She wasn’t anyone who most people would even notice.  She was the woman who cleaned the hospital rooms.

I remember her taking such pride in her work and cleaning her assigned rooms until they were spotless.  Monday mornings following her two days off, she’d come in and complain about the job the weekend crew had done, because she’d find dust curls or plastic wrappings under the beds.  She’d find spots in the sink.  Never on her watch. Never. And she’d work harder to get the rooms back to her level of par.

But it wasn’t her cleaning that I looked forward to every day.  It was her. It was the her attitude.  It was the way she came in, and spoke directly to my son.  She learned his name right from day one, when he was resting somewhere in the deep corners of his mind, in his coma.

Her name tag said “Joan”.

“Oh, you’re a handsome one,” she’d say to Damon, not caring that there was never a response.  “But don’t get any ideas. I’m old enough to be your grandmother.”

“Wake up, Damon.  Your mother needs you.  Wake up.”

And she’d turn to me and say, “He’ll wake up.  Just wait and see.  I’ve seen it all.  He’ll wake up.”

“But the doctors tell me there is little hope,” I confided in her.  “I’m scared of what they’re saying.”

“They don’t know anything,” she’d spit back at me. “Listen to Joan.  Listen to me.  He’s going to wake up and he’s going to be OK.”

And she’d pat his hand, and I’d see a tear drip down her face, and she’d say, “You’re going to be OK, Damon.  It’s time to wake up.”  She told me she prayed for him every night.

The medical staff would come in to our room without a greeting and talk above us as though Damon were an object, as though he were not a son or a brother or a grandson or a nephew.  They never told him to wake up.  They never patted his hand.  They pricked him and pinched him and said he’s not responding. There is nothing there. And they’d walk out, as coldly and callously as they had walked in.

Not Joan. When Damon’s one eye finally opened after a few days, she was as excited as a family member, as if she had known him for years.  I told you, she’d tell me.  He’s going to be OK.  I just know it.

“Now you can see this old lady, Damon,” she’d say to that one eye staring into nowhere.  “Now you can see me.  You’re going to be fine.”

She bitched to me about hospital policy of making employees get a flu shot.  She “didn’t need no flu shot,” and she refused to get one.  So they made her wear a mask.  And she bitched about that, taking it off and on while she cleaned and talked, because it bothered her.  She was irritated with it and the hospital staff in general.  Her feisty-ness made me laugh when there was so little to laugh at.  She was a fighter, no matter what the battle.

She had no medical background, whatsoever.  But I chose early on to listen to her instead of the neurosurgeons with their impressive degrees and their cocky attitudes and their prognoses of doom.  I chose to listen to Joan because I felt a power in her; I felt her power in her God.  Teams of doctors and residents and nurses and therapists passed through that door, but it was Joan I believed in.  And I hugged her when she walked into that room every day and I hugged her when she left.  I hugged her, probably against hospital policy, because I wanted her faith and I wanted her knowledge, and I needed her beliefs to transcend into me and then through me into my son.  I felt I was hugging hope and hope was tangible.

When we left that hospital for the next one after our five week stay, I had the ambulance driver wait until I found Joan. I said goodbye and I handed her the 8×10 framed school picture I had on the shelf of Damon, taken just months before.  I had brought it in to the hospital room from home in the beginning days so the doctors and nurses could look at it and see who they were treating and understand that he wasn’t just a patient in a coma; he wasn’t just a head wrapped in bandages; he was Damon.  I handed her that picture and I said, please, Joan, please take care of this and continue praying for my boy. And she wiped her tears and took the picture.

Today, she told me that she had placed it on her shelf in her house and whenever she passes by she says a prayer for my boy.  For four years, she’s been praying for my son.

For four years, I’ve thought of Joan when anyone in the medical profession tells us we are at the end of recovery, there is to be no more progress, what you see is all you’ll get.  I wonder, with all their years of schooling why they don’t see what I see, why they give up so easily. And I don’t listen.

So, this afternoon, when she asked, “Damon, is that you,” she wasn’t amazed at how far he’s come from those early days, although she was so incredibly joyful.  She had known from day one. She believed in her faith and in her prayers and in a boy she hadn’t even known.  She had believed in a mother’s love.  She was so gleeful to see him sitting in his chair with both eyes open, hear him say a few words and see him smile, but she wasn’t surprised.  There was never a doubt, she said.

31550 (1)She asked her husband to take a picture of her with Damon to put next to the picture she had at home.  She will continue to include us in her prayers, she told me

I will continue to include Joan in my own prayers and in my speeches and presentations I make on brain injury.  Because the medical world needs to know that sometimes healing comes from more than their science and their medicines. It doesn’t always follow the path of their charts or their graphs. Sometimes, even in the bleakest prognoses, it comes from hope and love and faith.  Sometimes, it rides on the backs of angels and prayer.   And sometimes, miracles happen.

I will be forever grateful for that one lone voice in the ICU, that life line thrown to me in the darkness, that tangible hope.  And I will be grateful that today Damon chose to go to Wegmans when he could have chosen to go anywhere else.