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.
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.
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.
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.
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.
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?”
“Mary Brown. What’s your middle name?”
“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 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, their heels clicking coldly on the hard vinyl floor.
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.
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 thoughts 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.
He opened his golf umbrella on that sunny, blustery day as he walked toward us, meeting us for the first time. “To keep the wind away from him,” he said.
I looked into his eyes and searched his face, not quite believing he was that concerned. Not after the other school bus driver. Not after the Troll.
The Troll, with his fuzzy reddish hair standing up on the very top of his head, had said nothing to us as he helped as little as possible to secure us in the bus, closing the doors and starting the engine before we were totally buckled. He drove way too fast considering his riders, speeding through the windy country roads. He dropped us off on the cul-de-sac in front of my long, snow covered driveway, with the sleet hitting our faces, the wind whipping around our ears, and he drove away without a word, with me staring at the back of the bus wondering how I was supposed to push the 100-pound wheelchair which held my 170-pound son, the distance through the driveway slosh and up the steep, icy ramp at the back of the house, and carry my huge, purple Nike duffle bag at the same time.
Tears poured down my face at the unfairness of it all that day as I struggled to get my son into the empty house, knowing he was cold and uncomfortable. Knowing I was not strong enough to do this on my own. We had just gotten him back to high school for his senior year after more than a year off, most of it spent in acute care rehabs and ICUs. He was not supposed to even be alive. At the most, he was supposed to just exist as a vegetable, if you believed the doctors, but here he was back in school, and I wouldn’t, couldn’t, leave his side.
I had been so excited for him to return to school, but at that point, at the end of that day, I was exhausted and had little strength to be excited for anything. I had no strength to push the chair. The end of the driveway may as well have been the end of the school parking lot. And the Troll drove away, leaving me there. Leaving us there.
So, that next day, in the windstorm, I was reluctant to even hope it would be different.
“Can he communicate?” this new driver asked me.
I nodded. “He understands everything. He speaks just a little.”
“My name is Tony,” he said to my son, bending down to make sure Damon heard him. My son surprised him by reaching his only working limb up in a handshake, the strength of that handshake never failing to shock most people as they never expect such strength to come from such a compromised body.
“Backwards,” he continued, “Tony is spelled YNOT. My friends call me Ynot.”
Damon smiled slightly, his gorgeous lopsided half smile. And a friendship was born. The best kind of friendship. Beautiful, pure, and totally unexpected.
“Do you mind,” Tony-Ynot asked me. “How did this happen? I just want to know.”
“Car accident,” I answered. “A year ago.”
That day and every school day after that through Damon’s graduation day, he drove us home from school, to the top of the driveway, and insisted on pushing the wheelchair to the back of the house and up the ramp, making sure my son was safe, making sure I was ok. He wouldn’t let me lift a finger. You do too much, he’d tell me.
Some days he drove us to the school, when we had no other appointment before class. Other days he arranged to pick us up at the rehab facility when we were finished with our 8:00 am appointment, so I wouldn’t have to arrange for other transportation to get us from rehab to school. Often he’d stop with the school bus next door to the rehab at the Dollar Store, and run inside to do some shopping or bring Damon a gift. A train whistle, a hand exerciser, a fedora hat or an umbrella hat.
He was always early and we were always on time for Damon’s Chemistry class, his only class that marking period. From the windows of the bus, we watched winter turn to spring and spring turn into summer, the three of us together that year. He purposely drove past horses and fields, dropping any other students he might have that day off first, so that Damon could see the sights, so Damon could be last to get off the bus, and Tony could visit with us a bit on my back deck. And he would talk.
I learned so much about him through his stories, the stories that 80-year-old men tell of their lives, with that far-away look in their eyes reliving the past, the happy, the sad, the memories. I knew he had been walloped with the passing of his wife a few months back. He would never get over that loss that devastated him, that rocked his world off its axis.
I learned about his daughters, of whom he was so proud, his sons-in-law, and his own sons. I learned of his grandchildren, his great grandchildren and his friend from Arkansas. I learned of the lengthy list of jobs he had had through the years to support his family.
He was a New Yorker at heart and no matter how far away he lived from the City, he would always be a New Yorker at heart. He had driven cabs, had an oil company, a printing company, a landscaping business. He took care of the love of his life through her very last breath. He had a story a day, and better yet a great sense of humor. Self-depreciating humor. “I only use nickel words,” he’d say. But he had million dollar stories. He had million dollar advice.
He had bad hearing back then before his hearing aids, and I would have to scream from the back of the bus to tell him something. We laughed then and still do at the day about one week after we met, after four bus rides home, when he looked at me in the mirror of the bus and told me about the house sale he was having. “Where do you live?” he asked me.
What? I thought, He’s driven me home for a week and today is asking me where I live?
“Um…..” I answered, yelling from the back, “……with Damon?”
“I know,” he yelled back, not quite hearing and definitely not understanding. “But where do you live?”
This went on for a minute or two. “I’m his mom,” I said, praying that dementia or senility hadn’t set in so quickly. “I’m Damon’s mom.”
“What?” he yelled back. “What?”
“I live with Damon. I’m his mom,” I was screaming at this point.
“Oh my,” he laughed when it finally hit him. “I thought all this time you were his aide. I never thought you were his mom.”
“And I thought you were losing your mind,” I laughed.
From that day on, even though he was younger than my dad, I adopted him as my Grandpa and Damon’s great Grandpa. Because he had thought I was too young to be Damon’s mom. Because he felt like family.
When he told me he ate Dollar Store cans of soup for dinner I made sure I made a little extra food when I was able to cook dinner, taking him some the next morning. Greek salad was his favorite in those days when I had more time to make something.
I laughed at most of the stories and told him I’d write a book someday. A book on his life and his stories.
When the lady at the front desk of the high school told him she’d like to introduce him to her dog, because he loved dogs, I teased him that that pick-up line was better than “Would you like to come to my apartment to see my fish tank?”
Two years later, wanting to give Damon the fish tank he had for years in his house, he wrote to me, via text, “I can’t stop laughing,” he said. “I really need you to come over and see my fish tank to see what you think of it for Damon’s room, and I keep thinking of your comment when the lady wanted to introduce me to her dog, and I can’t bring myself to ask you if you want to come see my fish tank.”
So many stories, but the story he couldn’t get enough of was Damon’s story…..the story of the miracle boy he drove home from school every day.
When both newspapers ran articles that winter on Damon and his recovery, Tony was first to ask for his autograph, his glee obvious as Damon wrote “To Grampa Ynot; Love, Damon.” I gave him a 120 page printout of every update I had ever posted to Facebook on Damon’s accident and recovery. He wasn’t a reader, but he couldn’t put it down. “What an inspiring story. You can help people. You have helped me,” he told me. “You don’t know the people you’re helping.”
He named Damon “Rocky” and me, Mrs. Stallone. And he says he will be the one when the time comes to drive Damon to the Court House stairs so Damon can run up those stairs with the music of Rocky blasting in the background. It will happen, he keeps saying. Write a book he always tells me…except the last chapter isn’t ready yet…the last chapter when he runs up those stairs.
When I told him that first spring with tears in my eyes that Damon had a beautiful date and would be attending the senior prom, a miracle in itself, he insisted that he would be in the driveway with the school bus and drive him and his friends to the event. I laughed. They won’t allow that, I said. You watch me, he said. And the bus was delivered the morning of the prom so we could decorate it with streamers and balloons and he showed up later in his dapper suit, playing the role not of bus driver but chauffeur.
I had planned a pre-prom party to get some pictures of my boy who was not expected to be alive let alone go to his senior prom. I nervously fretted about the weather for two weeks prior to that day.
“I’ll get you sun,” Tony told me. “I have an in with the guy upstairs. He owes me.”
And it rained all day. “Where’s my sun?” I texted Tony in the morning.
“Believe,” he texted back.
It rained as the beautiful girls in their stunning gowns and handsome boys in matching tuxedos piled into my house. “Tony? It’s raining,” I panicked.
“Believe,” he replied.
And it rained until, on cue, after everyone arrived, it stopped, and the sun broke through the clouds and heated everything up while it gave us chills. Immediately the ground dried, and it somehow was magical, unworldly, and pictures were gorgeous and the day was perfect.
We joked after that: Can you get me sun for graduation, as well, Tony? What about for Damon’s grad party? For the weekend? I told him he reminded me of George Burns in the movie, “Oh, God”.
He also managed to secure the bus for graduation that year and my entire family rode in style to the huge event, not having to worry about parking or anything for that matter. Television crews came to film Damon take a few steps across the stage. And we felt like celebrities and that school bus was our limousine.
Damon’s graduation ended our bus rides but not our friendship. Armed with donuts for Damon’s sweet tooth each time he visits, he never turns down a cup of coffee. We trade my Greek salad for his Easter pie. He stops by also to visit, unannounced, at therapy, noting Damon’s progress, cheering him on. Everyone knows his name. Tony-Ynot.
He plays the lottery for Damon. “Wait for that 11 pm call,” he always tells us. “When we win, I’m calling immediately.”
“Yo, Tony!” is Damon’s greeting, every time he sees him. “Antonio Josepe” Damon always says, using Tony’s Italian name and then reciting some of the Italian words and jokes Tony has taught him.
He’s 82, now, and celebrates his birthday each year by wearing a T-shirt that sports his age, and he increases the number on the shirt by hand with each birthday. I’ll wear this shirt on my birthdays ’til I’m 100, he jokes each year. He has a Facebook account and a smart phone and just a few times has needed instructions, but otherwise manages this new technology quite impressively.
We text instead of call, because I know his hearing won’t have any impact with texting, and besides he likes to use smiley face emoticons with mustaches.
He was there for me when my dad died, but I never told him about my husband leaving. He figured it out eventually, but with his Italian temper, I didn’t want to be the cause of him getting him riled up and upset when the leaving was fresh. He was the only one I thought of when I needed help with my daughter’s recent graduation, having to push my mom’s wheelchair, maneuver Damon in his power chair, take pictures and watch the event. “What time should I be at your house?” he texted back the minute I asked him his availability. He drove us in our wheelchair van like in the old days. He pushed my mom into the stadium even though he’s just a few years her junior. He made it all doable.
He just recently traded in his house for an RV, which has added a spring to his step and shaved years off his features. “I feel terrific…years younger,” he said. “I’m getting into the driver’s seat and just going he told me. No real destinations, no set plans. I’m taking off in the fall and I’ll return in the spring. Unless of course Rocky is ready to run up those stairs. Then, I’ll return immediately.”
So many people have come into my life, especially since Damon’s accident, and even more people have gone out of my life. But the special ones don’t come often enough. The special ones with their smiles and their stories, their huge hearts and their golf umbrellas are a rare find and a true blessing, especially for a 20-year-old disabled boy with a middle aged mom who pretends she’s young enough to have an 80-year-old grandpa.
This friendship is a true two-way street, two people helping each other, each thinking they have gained more than the other. This friendship, like Damon’s story, thankfully doesn’t have a last chapter yet, either. Somehow I am sure it will tie into the other last chapter of the other story I’m writing, on the Court House steps.
Believe. Because…. Ynot?
***update March 6, 2016*****
I thought my heart couldn’t break any more. I was wrong.
This is not how I had written the final chapter in my mind. But I am happy I wrote the rest while he was alive to read it.
“Get better,” I told him a couple weeks ago.
“Make sure you get Rocky to those court house steps,” he answered.
“I can’t do it without you.” I replied. “We need you to get better.”
“You will and you have to,” he wrote. “Don’t you dare let me down.”
My best writing came out of an online class I took last summer. It wasn’t so much due to the instructor because the instructor didn’t really instruct, and all her critiques on everyone’s pages seemed to be nothing but positive. It was moreso because the prompts were fantastic and could be tailored to my story and because I was forced to write at least 300 words a day for about four or five weeks. And it was because I was honest in what I wrote. Truly honest.
I amazed myself that I wrote as well as I did considering most of the time I do not reside in a physically or mentally quiet place.
Sometimes I wrote in hotel rooms two hours from home, totally exhausted after tucking Damon in for the night after a long day of physical rehab. Sometimes I wrote at home, after a twelve hour day which included driving to and from rehab, again after Damon was in bed for the night. Sometimes I wrote during the rehab session itself, in the waiting room, in a panic that I was coming up on the class deadline and I wasn’t even near finished.
And sometimes I just wrote during the day at home amid the noise of Damon’s online games, his loud music and YouTube videos, and in between fetching this or that, doing laundry, cleaning, bathing, dressing, or feeding this 21- year-old, brain-injured son of mine.
I don’t ever have the luxury of a bulk of free time to dedicate solely to my writing. I do have a quiet room, a beautiful writing room, but never much opportunity to sneak into it to use it. Such is the life of a parent caregiving to her disabled child.
Damon has little patience and can’t seem to comprehend that if I am holding his urinal bottle in place for him chances are pretty high that I can’t get him his phone, get him a drink or stand on my head at the same time. I only have two hands, I say, and I wince, because that is double of what he has functioning, right now.
So he certainly doesn’t have the patience for me saying: One second. I’m in the middle of a thought. Or: How badly do you have to go? Can you hold it until I finish this sentence?
Even right now, during this short spurt of writing, I have been summoned to his bedside three different times to adjust his pillows, to fix his sleep mask, to rub his ankles. I write a sentence, I get up, I write two more sentences, I get up, and I come back to finally finish a paragraph.
During the online summer course, however, somehow, regardless of my ups and downs and ins and outs, despite the urinal bottle and the showers and the pillow adjustments and wheelchair transfers, I did find time to write every day for those four or five weeks. I felt so inspired by those online prompts and so hungry to get my words into sentences and paragraphs and essays that I wrote any and every few minutes I could find throughout my crazy day. Of course, I also didn’t want to be embarrassed that I failed to produce something on any required day even though grading for this course was not a factor.
And, even more amazing than all that, I was happy when I read what I had written. Seriously happy. Confident. Wowed by my own essays. I thought some of them were so good, I sent them on to friends, just waiting to bask in their adoration of my words. And bask I did. For those four or five weeks.
During the course, I was also required to read the other students’ writings and critique them. And they mine. I felt like a buffoon at first, critiquing English majors and “real” writers, because honestly, I had no clue as to how. I do not know about juxtaposition, split infinitives or allegories (Yes, I googled those. I’m an accountant for heaven’s sake). But as we got going through the weeks I realized, that like an average reader, I either like what I read, love what I read, or I don’t. Not because of juxtaposition, split infinitives or allegories; for no other reason than it’s a damn-good, well-written, truly honest story.
It was scary as hell to write for and be critiqued by those who knew so much more about everything literary. Even though I knew I had a damn good subject. And I knew I could write.
What I didn’t know was if I could be honest and raw and real….everything required to tell a story like mine.
I didn’t know if I could truly write from my soul, from seething pain to sheer joy.
Brain injury is a journey of emotional turmoil for the loved ones of the injured. We are thankful beyond measure our loved ones are still with us. We grieve beyond measure at the daily reminder of whom we lost. Neither emotion can be hidden; both need to be acknowledged for the story to be true.
I found it easy, after a few attempts, to be more honest in front of faceless strangers. Much easier than being honest in front of friends, Facebook or real. They didn’t know me. They had no expectations. And I felt they were not there to judge my topic, only my presentation. And therein lay the difference, the step-up in my writing. My honesty, transcribed into words.
Looking back today, however, I’m actually frightened of what I wrote last summer. I’m frightened not only in sharing what I wrote; I have little confidence now that I can continue at that honesty level, which is the level of writing I need in order to take the next step in actually writing the book.
Honesty requires bravery and I’m scared to be so vulnerable.
It’s no longer just about me staying honest about myself, as I was last summer. I need to step it up now and go even further than that to tell the whole story. I now also have to be honest about others, regardless how they come across on the page. Honest about their reactions. Honest about their emotions and the way they impacted me and the situation.
Honest about the hell that comes with brain-injury and caregiving.
Honest about what happens when life shatters and then just keeps on shattering.
During the early days, actually the first few years after Damon’s accident, I wrote on Facebook every day. It was a cathartic healing for me, a way to deal with what was going on around me, to make sense of it, and to send out hope, to update friends. But I wasn’t always real. I was seldom totally honest. I couldn’t look over the edge into the darkness, so I wrote of light.
I stayed cautiously positive and hopeful, instead of writing what the doctors told us about vegetables and nursing homes and pulling the plug, because really, I thought, who wants to read the negative shit?
Responses and comments came flooding in, gushing about how inspirational we all were. How much love our family had. Our strength. How we exemplified the meaning of family. And I read them all as I sat in the rubble, the charred remains of my life, the crumbling of my family unit.
They wrote of my strength as a mother. They asked how I kept it all together. They didn’t see me go 4 or 5 days without a shower, sometimes unable to put one foot in front of the other. My total exhaustion. My heartache. The pains in my shoulder and back so bad that I couldn’t get up to walk. They didn’t see me throw things or cry myself to sleep. They didn’t see me wiping up vomit or shit or screaming at the top of my voice. They didn’t see it because I never wrote about all that.
I never wrote about it because writing of the negative wouldn’t serve my purpose. I couldn’t mention my shattered surroundings. Because, again, who wants a daily dose of negative?
I wanted my readers to come back. I wanted them to be happy and hopeful. I wanted them to follow the story. I needed to keep Damon in their minds, because by being in their minds, perhaps he remained in their prayers and perhaps the universe would shift and miracles would happen. Perhaps sending out the positive would cause the positive to be returned to us, to him, tenfold or more.
And we know that miracles did happen. Miracles the medical profession just could not believe. Miracles they never saw as remotely possible. Of course we have so far to go. But Damon is with us. He is alive. Damon can communicate. He can laugh and make us laugh. And most importantly, he can love and be loved so much right back.
But he’s not the son I had. And this isn’t the life I wanted.
I feel the time has come to tell the full story, complete with the darkness.
I need to share my fear, my panic, my broken heart, my broken home, my broken dreams. I need to write of the depression. My need to be in control. My losing control. My selfishness and my selflessness. The loss of marriage, of friends, of a life that looked so picture perfect from the outside. The shattered happiness and loss of such a bright future.
I need to entwine those truths with the miracles, the inspiration and the faith with the horror and the hell. And I need to tell it from my viewpoint. It’s my story. It’s my life. And it may upset a few people.
Why don’t they understand what I’m going through? I, exasperated, recently asked a friend about a close family member of mine.
Because you have made it look too easy on the outside, he responded. You’ve sugarcoated it.
It’s been anything but easy. It’s been anything but that. And I need to write it all down.Because the truth may help others. Others on this journey.
My ultimate wish is just that, to help others following in these footsteps. I can’t do that by glossing over the darkness. It will be no help to them if they read words of inspiration only without the words of despair pushing out from behind the inspiration.
I want to write an honest memoir and I want to try to fully open up. It is time. But, for me to write anything on a serious level, honest or not, I need to stop procrastinating. I need that kick in the ass. That pressure. Those deadlines.
So, I signed up, once again, for another online course. This time it’s ten weeks long. Ten weeks of writing every day. Of reading others’ writings every day. I can massage every prompt, like I did during the first session, to fit my story however I want. In this setting I hope to flourish. I plan to be as truthful as I can. I will piss people off. And I will try to write a damn-good, well-written and honest story.
I hope to include the essays I write over the next ten weeks in my blog, well, as many as I can without compromising my book. And I promise to…..
Hold on to that thought….I need to get Damon his breakfast.