Tag: caregiving

Broken Hearts and Orange Popsicles

11265519_880811915347021_2824170095754737272_n

You never expect it although nothing in life comes with more certainty.

I joked with my dad that night as I drove him to urgent care, asking him why he picked the coldest night of the year to not feel so great. A closed sign on the door made me turn to him and say, “How bad are you? Should we go to the ER?”

“Nah. Let’s find another urgent care place.”

“What exactly are your symptoms?” I asked him.

“I’m not sure,” he said. “I’m just not right.”

He didn’t look just not right; he looked just wrong. I drove him to the emergency room.

Chest pains I told the lady behind the desk. I said it to rush their response time. I said it because he looked weak. I said it because deep down perhaps I knew.

He joked with the nurses. He joked with the doctor. Stop joking, I thought, or they won’t be thorough. They’ll think you’re fine.

But the tests weren’t a joke. The results didn’t make anyone laugh.

Can’t be my heart he kept saying. No one in my family had heart issues. They all died of cancer. Maybe they didn’t live long enough because of the cancer for anyone to know they had heart issues.

This came from out of nowhere he said. It’s been building for a while they told him.

Blindsided. All of us. Even him. Especially him. I’ve always taken care of everyone he said. Who’s going to take care of everyone? You’re not going anywhere I told him. Not now. Not yet.

And my brother and I talked to the doctor and my brother remained calm and something inside me just broke and something inside me twisted and something inside me that for three years since my son’s accident held the floodwaters at bay became unplugged and every emotion rushed out, poured out, and I was reliving three years ago with my son but it was three years later now with my daddy and I couldn’t keep anything in check. I couldn’t keep anything under control.

And I rubbed his forehead and I held his hand and I held up his head so he could sip some water. And I stared at the monitors that I knew so well and I watched his vitals make a slight comeback. And I screamed at a nurse for her incompetence and I took turns with my brother trying to make him laugh, trying to make him smile.

And I washed his hair and I helped him walk down the hall when he was given the ok to stand. And I reassured my mom that everything was alright and my brother reassured me.

There is no option I said later when the doctors gave us options. There is no option. He needs the surgery. Because he acted like he was 60, and looked no older than 70, everyone forgot that he was 86. Even us. Have the surgery, Dad, we told him because they told us there was over a ninety-five percent chance of success. They told us without it that there would be a ten percent chance he’d make it past the next six months. My father was a gambler – he always loved to go to the nearby casino and play craps. He read books on craps and studied the odds. “Ninety-five percent success rate? You bet those odds all day long, Dad,” said my brother.

“What choice do I have?” he asked. “I’ll have the surgery. And I want to have it done here in Wilkes-Barre.”

And we all gathered together that morning of, and we all joked around as families do. My brain-injured son sat in his wheelchair; my daughters sat on the foot of the hospital bed, one being calm and one being funny, coming in scrubs and donning surgical gloves, just to make us all laugh. We stripped him of his jewelry. My mother, one hand on her cane, the other shaking as she held his wedding band, terror in her voice as she asked, almost pleading, “You’ll wear this again, won’t you?”

I took his cross and put it around my neck, the gold mixing with my silver, a combination I’d never do, and now won’t do without.

We waited in the waiting room for the three long hours, but my mom waited at home because, at 88, she was too weak and her health was too poor to wait in that hospital. We nervously joked and we nervously laughed and we waited and we waited. My oldest did some yoga poses and my youngest played on her phone. My son had long gone by then, being given a reprieve from the wait, needing his own care. When the doctor told us all was well and my dad was in recovery, my brother left to pick my mom up from her nearby house and when we were able, we all rushed to see him in the recovery area. I held his hand and I shushed the others. I was so experienced in this role, the only one who knew hospitals and recoveries and the searing pain of seeing your loved one attached to breathing tubes and wires and monitors and bells and whistles. I took charge and after a while I kicked them all out, with the promise that I, too, would go right home and rest. But I didn’t. I stayed until after midnight. Until his blood pressure stabilized. Until I made sure that those on duty knew the worth of this man to his family, to me, and would take the very best care of him. I held his hand until 1:00 AM.

“He wants me to turn on CNBC,” my brother told me on the phone the next morning, around 7:00. “He’s in a lot of pain, but he wants to watch the stock market.”

I breathed a huge sigh of relief. I smiled. That was Dad. He’ll be just fine. We all suffered through years of having to be quiet and listen to the news and the stock market reports. In the car, in the family room. My son, when he relearned how to speak after his accident, always brought a smile to my dad’s face when he’d greet my dad with “Hi, Pappou. How’re your stocks doing?” The market and my dad were one; when I heard stock market, even after I moved out of the house, I smelled my dad’s aftershave. I pictured the man who had shaped my life, who told me from a very young age that I could be whatever I wanted to be and I could accomplish whatever I decided to accomplish. The man who was my safety net even in this fifth decade of my life. The man who always said everything will be fine…don’t you worry about that. The man who gave me confidence and wisdom and a smile and story after story and unconditional love, the special love only given to daddy’s little girl.

I pictured this very successful businessman at his desk, in the office in his house, with the yellow sheets of lined paper and the green accounting tablets, long before computers were introduced into his world and long after. Writing down the numbers. Adding the profits or subtracting the loss. He always had a smile on his face, either way. This was his game. This was his talent. We of course all complained when forced to listen to the business news, but on that morning I was thrilled at this normalcy. I told my brother I’d be in in in a while after I had arranged care for my son. I got to the hospital around lunchtime to relieve him and my daughter and mother. “His smile was biggest when he saw you,” my daughter told me later. “He knew you’d know what to do. He was so happy to see you.”

But he was in such pain. So much pain that he told my brother that if he had known the pain would have been so bad, he’d never have had the surgery. Did you tell him a few days of pain is worth living at least 10 years more, I snapped. Did you tell him that?

“Do you want a popsicle, Daddy?” I asked him that day after what minutes before the doctors had told us was a very successful open heart surgery, and that the pain was to be expected. I had just sent my brother home with my mother, right after the doctors had left, telling him that Mom didn’t need to sit there any longer, that I’d stay through the afternoon and he could relieve me later that evening. “The nurse said you could have a popsicle.” He nodded yes and I ran out to the nurses’ station to ask for one. The nurse behind the desk unwrapped an orange ice pop on a single stick and handed it to me to give to him.

“Here, Daddy,” I said as I put it toward his mouth. “Take some of this and your mouth won’t be so dry.”

Instead of licking it, he bit into it from the top, making me wince at the thought of the cold hitting his teeth. A piece fell down and landed on my hand. I licked it off my finger, tasting long-ago summers, the covered back porch on the beach house; kids running up the steps shrieking, kicking up sand. It was sugary sweet, but not my favorite flavor. More the flavor of baby aspirin, not citrus as orange suggests, and I wondered briefly as the cold ice hit my tongue, why they called it orange-flavored; oranges never tasted that flavor. Maybe orange was named for the color, but then why not purple flavored, instead of grape; why not red and not cherry?

I gave him another bite, but this time he had trouble getting a piece off because he was too close to the stick. “Maybe you should hold it, Daddy. Maybe it would be easier if you fed yourself.” But at that instance something happened, something that the doctors told me later I didn’t see, but I knew I saw because I was there and they were not. I was there, holding his hand and holding the orange popsicle. I watched as his eyes shut and then flew open, almost in terror; I watched as his hand couldn’t find his mouth, and I listened as his words slurred all together. I glanced over at the monitors he was plugged into, the monitors that I knew so well, the monitors that turned you from a living person to just a machine with numbers, and I watched as the numbers fell. I watched as his blood pressure rapidly dropped from 110 to 80 to 40 and I screamed to the nurse whose back was to us, who was too involved in whatever it was she was doing, I screamed something is wrong, something is very wrong, and she turned and she kicked me out so I wouldn’t be in the way, so I wouldn’t see, and someone else led me outside the unit into the empty waiting room, but not until after I heard the call. Not until after I heard Code Blue.

And waiting in that waiting room, for a while all by myself, shaking with fear and with pain and wondering what do I do now, what do I do without my daddy, I bit my nail, the nail of the finger that had caught the orange popsicle, and it no longer tasted of summer and beaches. It no longer tasted of baby aspirin. It tasted of death.

dad2

Nicholas J. Pyros

July 14, 1928 – February 24, 2015

Scrolling through life

20160104_160357

As I scroll down my news feed during my ‘in between this and that’ hours, I realize that Facebook is doing to me what the women’s magazines have done to me for years.

That feeling of inadequacy.

That feeling of I’ll never be good enough, I’ll never make the cut, I’ll never get a passing grade. Judging myself for years (and falling so short I couldn’t even pick myself up off the ground) against airbrushed faces and bodies on magazine covers and advertisements has left that stamp of imperfection on my mind and soul that will probably never be overcome.

Who cares that I graduated from a prestigious university? That I had a great job in my twenties and amazing kids in my thirties? I never could fit into a size 2 bathing suit; I still have no idea how to properly apply contouring blush; and my hair, no matter what, frizzes in a rainstorm.

I have to work hard to keep in shape and when I gain weight, I gain it in all the wrong places and when I lose it, I lose it in all the wrong places, as well.

My news feed at times brings about the same levels of inadequacy onto me. The picture perfect meals on a plate. The Pinterest house decorations. The knitting accomplishments, the fancy hors d’oeuvres. The workouts. The spotless homes. The vacations. And the glamorous lives!

I want to post pictures of the dead flowers in the vase next to my kitchen sink that I haven’t gotten around to throwing out; the dog hair clumps on my bedroom floor; the piles of laundry needing to be put away and the bills and paperwork I just threw into a cardboard box and hid because company was coming. The weight I’ve gained.

But I don’t. I succumb to the social, nonexistent-except-in-my-mind pressures and post happy smiling pictures of people who honestly don’t smile all the time. The dogs at their cutest, not after they’ve been sick all over the rug or they’ve rolled in something that takes hours to wash out. I push the clutter out of the way before I shoot pictures of Damon’s recovery, while he’s in the middle of doing something incredible. With almost a professional photographer’s eye, I survey the background to make sure the setting is Facebook acceptable. Wait, hold on, keep that stand, Damon, while I move everything that will show people that my house may not be in perfect order. Or any order.

Am I being judged? Held to Martha Stewart standards? Especially now in this new role in my life?

Probably not, but it only takes one slight negative to pull down all the positives. It takes one comment regarding my recovering-brain-injured son such as “Damon, you need better oral care” to reverse the 30 other comments about how handsome he looked in his selfie with his new hair cut. That day I scrutinized that picture that the not-so-sweet woman commented on, and then also his mouth afterward, and even though I knew she was wrong, I knew he had beautiful and clean teeth, I allowed her to put a damper on my pride.

I allowed it.

I allow others’ holiday pictures to put a low on my own holiday; I allow vacation shots to send me back to the days before the accident when vacations were plentiful and exotic and, if I’d had Facebook back then, would have been plastered all over my wall. I allow happy smiling faces of my past friends living it up at bars or concerts or parties to bother me, because, one: they are no longer in my physical life, two: they obviously did not need me in theirs to have a good time; and three: well, I just don’t have that freedom any more to be much fun.

I wonder if my posts and pictures of Damon’s recovery bother others in that same wistful way….others whose loved ones haven’t made as much or any progress after their own brain injury. Or others who have lost a child. …do they feel I’m gloating because mine is still alive? Do they judge themselves against me more than against their friends whose kids are in perfect health? Do the people who have progressed much further gloat to themselves? Do they feel more blessed?

I don’t want to nor do I try to be a measuring stick for anyone, in or out of my shoes. Not so long ago my posts regarding Damon’s attendance backstage at a concert bothered a fully able bodied young person, to the point she told me I was rubbing it in her face by posting that Damon had Luke Bryan’s autograph. I was shocked that we were on that side of the measuring stick. That others would compare themselves to our not-so-glamorous life.

Do I need to word things about my compromised, dependent, brain-injured child as he and I are going through the slow process of his recovery, a journey I wouldn’t wish on my worst enemy, so as not to instill any jealousy in anyone else?

It sounds crazy, but others (as I do in my times of insecurity), may interpret something totally different than the writer’s intent. Like me, the reader needs to understand as she peruses her newsfeed and compares herself to what she reads that it’s not always, if ever, about her, about me. I also need to understand, like my picture perfect backgrounds in pictures of Damon, it’s not always real. It’s just what I allow myself to show, to see, what I allow it to be.

The poem ‘Desiderata‘ by Max Erhmann, that I had hanging in my college dorm and then years afterward in my apartments and my house says, ‘If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself.’

I loved that line forever, but I never took its advice fully. Or at least I never felt worthy of being vain, only bitter.

Don’t get me wrong, I count my blessings every day. My three biggest blessings of my children are super huge, and of course my blessing of watching my son recover, albeit slowly, rather than the alternative as bleakly misdiagnosed by the doctors almost four years ago, takes me to my knees daily. But those glamorous Facebook pictures of those glamorous lives! Why can’t I have that as well?

The smart thing to do would be to post my updates and then close up shop for the day. But I can’t. I’m an addict. I need to know who adopted what dog, how cute the newest baby is, who broke up with whom, recipes and helpful hints I’ll never use, and funny memes. I don’t have time to read an entire book, or even a chapter at one sitting, so a quick article on what’s trending at the moment fills the perfect amount of time I have.

But mostly, the real reason I don’t close up Facebook and continue to allow myself these crazy feelings of inadequacy as I fall short in life’s comparisons, is because I’ve connected to the most wonderful people from all over the world. Some people I knew a different life time ago but lost years and years of being in touch. Other people I’d never have met if not for Damon’s accident or Facebook. Beautiful people who offer support and ideas and advice as far away as California, Australia and the UK. The virtual hugs and love and light sent to me from these total strangers, now Facebook friends, help counter my wistfulness at the exotic lives of others, making my jealousy dissipate and then sometimes almost disappear.

My closest friends today were mere Facebook friends right after Damon’s accident and total strangers before. Others are people who have reached out to me, or me to them, because we share life’s journeys and only we know what’s behind each other’s Facebook smiles and pictures of recovery.

“Are you awake?” The message rang close to midnight not too long ago.

“Yes” I answered my long ago friend whom I haven’t seen in almost 30 years. Another night of no sleep. “What’s up?”

“My dad passed today” was the answer.

I was never so grateful for the opportunity to be an ear. To be a shoulder. To virtually hug. I would never have had that opportunity outside of Facebook.

That’s my reason for constant scrolling, despite any feelings of inadequacy I allow my news feed to give me. I want those connections. I want those words of understanding. I want to help. I want to pay it forward. That and the fact I don’t have time for a more exotic life right now. But I just need to keep in mind that someday I will. And I’ll post all about it.

After I clean up the mess from the background.

Tunnel of Trauma

20151225_134208-2-1

It’s three years.  Three years.  We’re not through the tunnel, but the tunnel has side lights, it has lights wired in, it’s not total darkness all the time anymore; although the bright light at the end is still so far away, still so very dim.

As we journey past those side lights, life’s amazing windows in that tunnel, we see two beautiful sisters flourishing in spite of what life has handed them.  One highly achieving in school, in sports, becoming the most loving sister to her big brother, planning now her own future, based pretty much on his experiences.  I don’t know many adults that could have endured what she did throughout these last three years, and handled it with such grace and such strength.  Many can’t and won’t ever understand her part in this journey and may always continue to judge it, but they never, I am certain, could have filled her shoes, or walked her path.    We see the other sister redefining what she thought her life path would be; finding her inner peace, a journey on its own; helping others find their inner peace; opening her own yoga studio so close to home, so far from what and where she thought she’d be today, prior to that day, three years ago.

We forget, until we look back, the hidden toll this journey must have taken on both of them.  We forget until we look at the happy, before pictures:  a grinning brother lifting his sisters up in bear hugs, driving them in his Jeep, taking care of them both; a brother who appears stronger than life.  We don’t realize the extent of their loss until we compare it to the after pictures: sisters spoon-feeding that same brother, holding him up because he can’t sit on his own, pushing him in his chair.   We never see in any of the pictures what the past three years have emotionally cost these sisters, their inner turmoil, their demons, their struggle to accept.  What we only see is their beauty, not their strength; their smiles, not their pain.  We never see that both of them had to grow up way too fast, way too much on their own.  We don’t see their heart aching, their silent comparison of the brother that was to the brother that is.  We don’t see that they each face their loss anew every day, a fresh sorrow, as they walk down the stairs each morning, toward his bed.

The darkness still sometimes overcomes much of the light, as we move through our days.  Emotions constantly collide as grief slams into joy, anguish meets up with gratitude.  We lost the boy we had, there is no way around that, and we grieve for him, for us, and for his lost dreams and ours as well. On the other hand, our gratitude that he is still with us and our unconditional love for him is beyond measure….but it’s a teeter totter inside our minds, happy and sad, up and down, day by day, minute by minute.  We’re ok for a while, and then we’re not, and then we are.  Up and down. Up and down. The new norm.  Ever changing emotions, never finding their level ground.  The train speeds through the tunnel, speeds by the side lights, toward the light at the end, still so far away….scaring me sometimes that I am wishing away the ride so I can just get to the bright light.  I’m terrified to think what if after all endured, after all this time chasing the bright light, we never get there or it is not so bright.  What if it is forever dim?

Three years is forever.  Three years is a blink of the eye.  It just depends which side of the teeter totter you’re on that day, or which part of the tunnel you’re driving through at that precise moment.