Nine Years or Ninety, I Dedicate My Life

December 3, 2011

December 3, 2020

Nine years. And a lifetime ago. Time means absolutely nothing with brain injury. Except that it’s all we have. It’s forever. It’s yesterday. It flies by. It’s at a complete standstill. Day to day is meaningless as progress is measured in inches and ounces over years and years.


Before the accident and after the accident are my only sources of reference in our lives. Then and now. I can’t stop saying those words  even though I absolutely hate it when I hear them come out of my mouth.

Before the accident is always followed by a story, as though I feel I need to prove something to the person I’m talking to.  As though I need to explain that Damon wasn’t always this way. That we weren’t always this way.   “Before the accident,” I say, “Damon was the best skiier, the fastest runner, the most incredible mountain biker.” Or: “Before the accident, we were so happy, we traveled, we had everything.” “Before the accident, Damon built this, he said that, he had everyone peeing in their pants.” And, of course: “Before the accident, Damon took care of his friends, he was nerdishly brilliant and freakishly strong.”  Before the accident has become some rose-colored and perfect lens from which I view my son and that life. Then. 


Of course it was anything but perfect. Damon was a typical 17-year-old boy and not the herculean god I make him out to be. Our lives were shallow and not the matrimonial bliss we portrayed. Reality was tainted. So much time spent in keeping up appearances.  A phony marriage. Teenage girls. A college freshman leading the way to the dreaded empty nest. Fake friends. Too much alcohol. So much frivolity. So much waste. Before the accident (if I were being truthful) I didn’t really care much for myself or my life. Before the accident, life was kind of meaningless.  I did, however,  love my children to death…teenage girls and all.


After the accident we changed. All of us. Damon, of course, the most drastically. He lost so, so much. Every dream. Every opportunity. Just about every friend. He lost the ability to walk and speak well and drive his beloved Jeep. But weighing it all on the after scale, he gained something else. Something non tangible but very much there in his eyes, maybe behind his eyes, deep, deep inside.  He shines a different light than he did before. He emits a softer color. A sweeter soul. And for all his inappropriate words and unfiltered, spoken-out-loud thoughts, he projects an innocence he never had. I often tell him something touched him as he hovered between life and death. Something or someone left their mark. A sort of peace. A calm. Maybe a form of pure happiness. And being near him, we feel it too. We feel better just being close to him. But don’t ask him about it. 
A very (extreme) Christian man talked to him once about him being in a coma. What do you remember, Damon? “I saw Jesus,” was Damon’s answer. Oh, the man was ecstatic. He didn’t understand what Damon said next, but I did.  This man took Damon to a nearby friend, before I had the chance to intervene. Praise be to God, they both said, this boy is a testament to Our Lord. I said nothing until we came home. Damon, did you say Jesus took you into a record store? Like Nardone’s Gallery of Sound? “Yes.”

Damon, wasn’t that from a Family Guy episode?

 “Ha,” he said. “Yes.” 


So, after, he still has the best sense of humor and still makes me laugh. Many of our jokes are old, inside jokes that no one else gets. But they are always funny to us. And I probably appreciate his humor even more, because he has a brain injury, and nine or ninety years ago he couldnt even smile, let alone talk, and it’s wonderous and marvelous and just amazing that he is still so funny.


The girls changed after and then changed again, and again, and again. They are spread across the globe right now,  and I miss them. Are they better or worse or miserable or happy? They’re changed. I search into their souls to find a piece of the innocence they possessed, the innocence that smashed into pieces the day the car hit the cement wall. We all became as mangled as the car for a while, I think. But their journey is their story to tell, not mine. I don’t own their stories. Only Damon’s and mine. 


I’d like to think that I am a better person after. I sold my soul to the highest bidder in that first year, to whomever would heal my boy. I was weak and fraught and then strong and determined. I wonder what price I’ll eventually pay.  I’ve already lost a marriage, two parents, and an adopted grandfather. What more?

I’ve learned so much over the past nine years about what matters and who doesn’t. I have very few close friends but an over abundance of virtual ones across the world. Sometimes I’m not sure which group is more real.

I know, after, I care more and feel more deeply.  My mission is to help those on this journey or any journey, as best I can. Some days are seriously lonely, just me and Dame, and I wonder what we will look like in 20 years. Still the two of us, so much older, going to the same places, laughing at the same dumb jokes, singing the same songs? Who will take care of me when I can no longer take care of him? Will we share caregivers?


People see me in pictures and exclaim as to how happy I look! I love seeing you smile! You look so good!

It’s a picture. On Facebook. I’m not saying I’m not happy. But I’ll always be sad, too. I just post the smiles. Because I’m an ugly crier. And sometimes I just use the happiness filter on my camera.

Nine years or ninety. I’ll never feel life is fair. I’ll never believe things happen for a reason. I’ll never see what Damon’s potential actually was.  I’Il never know a future life without him by my side. 


I talked to my baby girl today and one of her comments to me about taking on more responsibilities in my life was, “You already dedicate your life to Damon, so you need to stop worrying about everyone else.” It hit me then, all over again. This is my life. After. Forever. Nine years, ninety years. I’ve chosen to dedicate it to Damon. I made that promise long ago and there will be nothing and no one who will cause me to break it. So time will continue to fly by and it will continue to be at a standstill. And I’ll age. And I’ll never know happy without sad and I’ll never know freedom without responsibility. But Damon will know love without condition.

And he deserves nothing less, after.

Seventh Inning Stretch

“It’s like the seventh inning stretch, Mom,” Damon said to me this morning, this seventh year anniversary mark of his accident.

Perfect, I thought. I am feeling it. That stretch. Emotionally. Physically. Mentally.

Stand up. Regroup. Reassess. Readjust. Take it all in. Stretch.

Seven years in and Damon is well. He’s healthy. He’s happy. But, most importantly, he’s comfortable in his new skin. He accepts where he is now. He believes in where he’s going. He’s strong. He’s smart. He has this uncanny ability to draw others in. To make them smile. To make them laugh. To make them feel so special, they come back for more. For more of whatever it is he has that makes them feel so good.

Seven years in and I have finally found my peace. Regrets have turned into anticipation. Sadness has changed to joy. My blessings of today have begun to surpass the hell of yesterday. What is has finally overtaken what could have been. I’m ok now. I’m really ok.

This past year I was on a mission to re-find me. Or perhaps re-invent me. And I have. A me I like a lot better than the me 7 years ago. A me who has learned so many things about life and love; hope and faith; beauty and ugliness; honesty; compassion…the real kind not just the lip service kind; weakness; strength; what’s authentic and what’s a facade; what matters and who doesn’t; and how to be real to others and true to myself.

In this past year I’ve shed people and places and their truths and their lies. I’ve shed walls that imprisoned me and a past that controlled me. Only when I let go of the monsters inside of me did I find the beauty outside of me. The glow to finally eliminate much of the darkness.

In this seventh inning stretch I reach high for the future I’ve always wanted and thought for most of these past seven years I was no longer capable of having. A future now in sight. I reach for my childhood dreams to become reality…. fairy tales and white horses, a real life love story, and a happily ever after, despite what’s happened….or maybe, in some twisted fucked up way, because of what’s happened.

I try to wrap my mind around the future of this boy who laughs, who loves purely and completely, who feels only happiness and nothing else. A gift so graciously bestowed upon him, to never feel sadness or anger or depression or frustration. Debilitating loss after devastating loss after shocking loss after unfair loss, and the closest he has ever come to showing a different emotion is to say, “That’s sad, Mom. If I could feel sadness, I definitely would be sad right now.”

Of course our story hasn’t ended. We are only stretching. We are only kneading muscles and relieving aches. We have innings to go. Love to give. Chapters to write. But what a difference now to look at our life as though we’re winning and not playing just to catch up. We’re confident. We’re thankful. Our energy has changed. And we’re up to bat.

Thank you for supporting us through these seven years. We love you all so much.

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.”

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.

****

(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.