Oct 31, 2013

Costumes and Changing Faces

I always thought Halloween was a peculiar holiday. As a kid you dress up and go door to door, taking hand outs from strangers—something that certainly defies all “stranger danger” rules. Nevertheless, the distraction of sugary treats can be enough validation to forget how weird the concept really is.

However, as an adult, I find Halloween even more mystifying. Not because of the creepy music or spooky undertones. I really just find it odd that people make such a fuss about dressing up. Spending exorbitant amounts of money perfecting a costume. Making sure everything  is “just right,” because “it’s only one day a year you get to dress up.”

Or is it?

Aren’t we all “dressing up” everyday as adults? Wearing our “costumes” to work and in our personal lives. People call it “changing hats” or a “different face.” Whatever the cliché, the truth is that we’re all acting a certain way for our certain role. Employee, Professional, Child, Parent, Student…the particular role dictates a particular “costume.” A certain way to dress, to behave, to talk. You wouldn’t dare curse at work or wear pajamas to a meeting. There are certain “supposed to’s” that we all adhere to. Certain aspects of the costume that we accept.

So to me, Halloween isn’t all that special. It’s just another day to dress us. You see, what I think is worth celebrating is the instances when you DON’T have to be anything other than yourself.

One of the few times when we’re not wearing a costume to fit a “supposed to” is with friends. People who you can be your true-self around. People you don’t have to censor yourself, your dress or your behavior around. People that have seen you at your worst and your best, but loved you the same in either scenario.

When my dad was sick earlier this year, it was a true eye-opener.  At a desperate time, when life feels like it was crashing down, we forget to arm ourselves with our costume du jour.  Life was hard, emotions were raw, sadness hovered over every new day and uncertainty over ever quiet night. There was no energy left to make sure I was filling a role. It was hard enough just to get through the days.

I recently ran into an old friend Meredith in the grocery store. She asked how my family was doing since my father’s stint in the hospital. I told her were all still trying to get back to “normal,” and she said something to me that shocked me.

“You know I want to tell you that your family handled the whole situation with such grace.”

I was shocked at her statement. It was the most chaotic time of my life. I feel like I had unraveled in a way that can only be caused by immense stress and desperation. “Grace” was certainly not a way in which I would have described those 6 months.  I had to have her explain. “What do you mean?” I asked inquisitively.

“I mean, you never had anything on facebook or social media that blasted your family’s private issues, you all quietly stuck together and put one foot in front of the other, like a united front.”
I smiled at her. “I’m glad it was perceived that way.”
To an outsider looking in, we had “grace.” To those of us inside, we were a wreck.
Worried, sleep deprived, anxious, waiting, anticipating death, anticipating a miracle, waiting, waiting, hurting, crying, and more waiting.
This is how I would describe that time in my life. When your parent is lying unconscious in an ICU room for almost 9 weeks, I wouldn’t dare say anything I did was “graceful.”

But maybe that’s because I was living it.

And every time one of us fell apart and “melted down” another family member pieced us back together. But after a while, it got too hard. And on those particularly hard days, the days that felt hopeless, the days when each one of us was too tired to keep ourselves together, let alone piece another together, we leaned on our friends.

The day my father was put in a comma, my friends (my boyfriend included) showed up at my house. I didn’t ask them to come. I didn’t have to. I don’t know what they were doing when I told them or what they have to adjust in their own lives to be here, but they were. Within hours they were literally by my side. That day they physically showed up, but they stayed by my side through everything. They didn’t let me fall completely apart. They wouldn’t allow me to crumble.

I know that my mother, brother, sister-in-law, sister and brother-in-law, all had a similar experience.  We all tried to turn into ourselves, to submit to despair and negativity. But we wouldn’t let each other and neither would our friends.

They were people who knew the true weight we were carrying and who tried to carry a piece of it for us—even though it wasn’t their father. Whether it was letting us bend their ear, sob on the phone, scream in an angry fit of rage or just show up to “check” on us…they were there. And when they physically couldn’t be, they send cards, texts and emails. On the nights we forgot to cook dinner, they send home-made food and hoagie trays. These small gestures weren’t just the “glue” it was the “grace.” "

They were the reason we appeared to be “together.” They were our sanity at times, our punching bag, and our hard-truths. What came from that experience is only appreciated in retrospect. That we realize quite quickly who was there to support us, who was there to gawk or gossip and who was there to witness our despondency only because it made them feel better about themselves.  

We were blessed to have such an incredible support system and to have people working behind the scenes to help us hold onto our “grace.” Our friends are people who love us, not because they have to, but because they want to. People who know us, unmasked and uncensored. People who help us to be better versions of ourselves.

I’ve always believe that God doesn’t give you what you can’t handle…but I do believe that if often feels like it more than we can bear. When that happens, God send us Angels, to keep us intact…we just call them friends. 


We should celebrate time with our friends. A time when we don't have to "dress up" and be anything but ourselves. With all the supposed to's in life, it happens less frequently than it should. For they are the "glue" and the "grace" when we need it the most.

“There is nothing I would not do for those who are really my friends. I have no notion of loving people by halves, it is not my nature.” ―Jane Austen

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
― Henri J.M. Nouwen,

Sep 10, 2013

The ICU (Squeeze, Squeeze, Squeeze)

“I (squeeze), Love (squeeze), You (squeeze).” Hands have always held a bit of importance in our family. We have a code of “Three Squeezes” something we routinely do as we kissed each other goodbye. Something I did as I ran out the door with friends or my boyfriend. “See you later,” (Squeeze, Squeeze Squeeze). Something that I never paid much attention to. It was just a tradition, a habit, a routine for us. One of the many quirks that families have. But  everything turned upside down when my father was admitted to the Intensive Care Unit (ICU) fighting for his life.

When change is anticipated, we welcome it—A graduation, an engagement, a new house, a new car, an arrival of a baby or a new job.  In those instances we celebrate change. But when change comes abruptly and unexpected, we want to hide from it, only to find out there is no where to hide.

That’s how I felt anyway when my father was hospitalized and put into a coma. I wanted to hide. I wanted to sink into myself, like a turtle gently tucking into a protective shell.

You see, my father was always a heavy breather. He smoked like a chimney and suffered from sleep apnea for as long as I remember. But in early January his breathing was worse. He seemed confused and couldn’t walk more than a few steps. He was finally too weak to resist our insistence that he go to the doctor. Our family (with coaxing and friendly “encouragement” from my 6 foot 3inch brother, and instruction for me to drive directly to the hospital) was able to get my dad evaluated.

It was just my dad and I in the ER waiting room. I was anxious and scared. I knew something was wrong, but didn’t know what. I knew that if he had the strength he would have walked out, but he was too weak. That was both a relief and an encumbrance. I waiting for the arrival of my mom, after my brother called and told her we were finally able to get dad to the hospital. She arrived within minutes; a few hours later, after much evaluation, they intubated my father, put him on a ventilator and diagnosed him with ARDS.

Acute respiratory distress syndrome (ARDS) occurs when fluid builds up in the tiny, elastic air sacs (alveoli) in your lungs. More fluid in your lungs means less oxygen can reach your bloodstream. This deprives your organs of the oxygen they need to function. Many people who develop ARDS don't survive. The risk of death increases with age and severity of illness. (The Mayo Clinic)

I went home and looked up his diagnosis. Something the doctors, and my friends in the medical field, encouraged me not to do. I did it anyway. I couldn’t help myself. The thought that more information was out there for me to read, lured me in. Within minutes I was “Googling” away. I read the above passage from the Mayo Clinic. My heart sunk and the lump in my throat grew larger. Then I read, “ARDS has a 70% mortality rate.” The sentence registered in my brain in slow motion—each word taking a moment to sink in. That meant my father only had a 30% chance of waking up. I then noticed that my hands were wet. Tears were streaming down my face onto my hands, onto my computer. I closed the screen, put my head in my hands and wept. That was the first time I felt the feeling of wanting to sink into myself. When I realized that I had no way of helping my father. All I could do was wait.

The next 9 weeks, were agonizing. My family always went to the hospital together. Safety in numbers, although no one said it, was the reason. We needed someone else there in case something was revealed and we needed to hold each other up. My sister had given birth to my nephew via C-section only 2 weeks prior, and she wasn’t cleared to go to the ICU. She, her husband and my perfect new nephew stayed away from the ICU.  I was always accompanied by my brother, mom or my sister-in-law. Only immediate family was allowed in the ICU and we were allowed only two at a time. But whomever I went with, we held hands; to give each other strength and to remind each other NOT to sink into ourselves because the person holding our hand needed us too.

As we walked down the hallways, the smell of rubbing alcohol burned your nostrils and the air was cold. The hospitals efforts to keep the unit sanitary, but really made it feel like “death” was hanging in the air. Maybe because it was. “Everyone leaves ICU” one nurse told us. “It just depends on what doors, they go through.” The front door was to the “Step Down Unit,” the unit for recovery. The other door was in the back, to the morgue. There were no doors in the ICU rooms themselves. They didn’t want to waste time pushing thru a door, time was of the essence, so each patient was only separated by a piece of glass and a muted blue curtain.

Even when the curtains were open to other patient’s rooms, I didn’t feel comfortable even glancing in. Everyone in ICU was fighting for their lives, hooked up to machines and ventilators, mostly unconscious. In some weird way it felt disrespectful to that patient’s family for me to look in and see their loved one in their most vulnerable state. So I kept my head forward, eyes to the ground, tried my best to hold tears back, and held onto the hand of my family member. The funny thing was, no matter who accompanied me, as we neared my father’s room number, just before we could look into see him, we squeezed each other’s hand. (Squeeze, Squeeze Squeeze…I LOVE YOU). Reminding each other that together we could face what ever was on the other side.

We had to wear gloves, a mask and a plastic gown to enter his room. He was so critically ill, we couldn’t risk compromising him with outside germs. Everything about this ritual felt foreign. To “gear up” just to see my dad…

Seeing a loved one, hooked up to a heart monitor, a ventilator, a feeding tube, IV bags, a cooling blanket and machines you can’t even identify, WAS NOT the hardest part of that day. It was the noise. The beeps, the alarms, the codes, the cooling blanket (an ice blanket hooked up to a generator that sounded like a lawn mower) a desperate attempt to bring his fevers down. Meanwhile, the doctors and nurses were talking at us; giving us reports in what sounded like a different language. I didn’t know what any of the noises meant. The beeping and buzzing was low in volume, but somehow deafening. You couldn’t ignore it. I tried though.

I tried to focus on my dad’s face; but his color was gray and his had a tube coming out of his nose and anther tapped to the side of his mouth. I couldn’t “see” him with all of that hospital paraphernalia. Meanwhile the beeping felt like it kept getting louder. It gave me anxiety. Should it be this loud? Should everything be making so much noise? 

I looked down to his chest. It moved in an unnatural rhythm forced by the ventilator. He was on a bed that continuously moved him and provided percussion to his back in an attempt to stimulate his lungs. I knew he was in a coma, but the bed and the ventilator kept moving him and that kind of thing plays tricks on your mind. I made me uncomfortable. I looked away. The beeping continued.

I looked down now to him hands. They too were marred by the effects of the ICU; the hospital bracelet and the IV sticking out. It felt almost hopeless. Like the person in room 3304 wasn’t my father, it felt like he was already gone—unrecognizable from the effects of the hospital.  But then the bed moved him and his hand turned over. His palm face-up and this time, it looked familiar. Unscathed by the illness of ARDS. It was his hand. His big “bear-paw” that always dwarfed my hand; His same hand that reached out for mine when we crossed the street when I was a kid; The hand that gave me a high-five after a dance competition; The hand that picked me up, helped me with homework, and grabbed me for a hug. The hand that I knew. Suddenly I was able to block out the noise, the beeps and the alarms. I found a piece of familiarity.

Without thinking I grabbed his hand. I squeezed it three times. (Squeeze, Squeeze Squeeze…I LOVE YOU).

But he didn’t move. It was the first time in my life that he didn’t squeeze back. The moment of solitude was over; I noticed the noise of the room again. The machines, the tubes, the IV’s, the monitors. It was louder this time, and I couldn’t take it to stand in that room any longer. All I wanted was to sink into a safe shell and hide, and yet, all that was happening was my father was sinking away, and he looked like a shell of his former self. I ripped off the plastic gown, threw it in the trash, and stood outside the room. It was overwhelming. It was awful. It is indescribable to stand physically next to someone, whom you love with all of your heart, and not be able to do SOMETHING.

Each visit went very similar to the one before. Everyday, was the same exhausting experience. Until about the 4th week of the coma.

They were trying to ween my dad from the ventilator he was on, to a less intense version. His color seems to be better, or maybe I just told myself that. There was no tube coming from his mouth or nose anymore. The tube to his nose was now something they called a PEG tube that allowed tubal feedings to be done through his stomach. They also removed the tube taped to his mouth by performing a tracheostomy; the placement of a semi-permanent tube into his neck to create an opening in his windpipe, so the ventilator could work more efficiently. At least now I could look at his face and “see” him. 

The nurses told us they had brought his sedation down a bit and suggested that we talk to him. They thought it would be good for him to hear us, even if it was subconscious. I didn’t know what to say.

            “Hi Daddy, it’s me.” I squeaked out. My voice cracked and I knew that with the next words would be a flood of tears. I chose to say nothing more. Instead I took off my glove, pushing up the sleeve of the plastic gown I have to wear, and I grabbed his hand. (Squeeze, Squeeze, Squeeze). I didn’t expect him to react. I have been doing this for weeks, and there was nothing. It really felt like he wasn’t even in there.

But then I felt the faintest pressure. I thought it was just the movement of the bed or the percussion on his lungs. So I did it again. (Squeeze, Squeeze, Squeeze). And again, I felt three small twitching/faint bits of pressure in a succession of three.

            “Dad, you’re there, you can feel me.” I literally said through tears and squeezed his hand. He didn’t wake up or answer or move again. He was back in the paralytic coma. But in that moment, he fought through, to remind me he was there. He was fighting. He was getting better. The doctors and nurses told me that it may have been just a reflex. “Don’t be overly optimistic. We have to talk about the real odds and outcomes.” They were preparing us for death, so it wouldn’t be blow. They warned us not interpret this as anything but a fluke, but I knew better. I knew it was my dad’s way of telling me he was going to pull through.

It took a long time for my father to wake up. But he did. He defied the odds, he was part of the 30%. When he was awake, he had months of recovery and rehab in three different hospitals. It was the hardest time for my family, but through every visit we held hands. We reminded each other with three Squeezes that we loved one another and that we would hold one another up.

Over the past few months, my family has had consultations, appointments, meetings and conversations with a slew of doctors and nurses. Experts in their field who know even detail about their niche of medicine, biology and patience care; but they didn’t know The Morelli’s and the importance of our (Squeeze, Squeeze, Squeeze). In our darkest hour, we stood together, we held hands and we reminded each other that we were there.