The Agony and the Ecstasy
I have already described the agony of the last few days of my mother’s life. I look back now and think that through all that pain, she had to feel the ecstasy in death. To watch her drugged out of her mind, drugged only to allow her to not feel the pain that we were witnessing, was probably the most terrifying visual I have ever experienced in my life. I spent three days coming in and out of the hospital, eating the food from the cafeteria, getting moments of sleep on hard cold floors and watching her, praying that she would wake up and tell me that it is over now, we can ALL go home. We did have some bright moments in that hospital room. Many loved ones came. My mom’s sisters and brother arrived at intervals to see her. Even as a surprise, my uncle Gene and cousin Rob showed up as they were in Florida coincidentally on vacation. Friends came to support us as well.
I really thought that this visit would be like the first time we were there. The first time, after a full week, she got her strength back to the point where she was able to eat, sat up and demanded to go home. I remembered it well. The time came when the physical therapist was called in to assist her with walking. We did not realize that after a week in the hospital, it would be difficult for her to get around on her own. Her legs were still very swollen because the tumor on her liver limited the blood flow. This made it very difficult for her to balance herself. The young overeager physical therapist appeared at her hospital room with an irritating smile, carrying with her a walker to show my mother how to steady herself so that she could walk. While I can imagine that this young girl wanted to motivate my mom, she certainly did not know her audience. While doing her job, she was treating my mother like an invalid and my mother was not amused. But, she wanted to go home more than anything. She wanted to be in her own surroundings, in her own bed, and in her own home. So, she got up, grabbed the walker and set out to prove that she was able to make it around the oncology ward fighting us the whole way. Then, when the young overeager physical therapist started to talk to her as if she were an infant, my mother became more and more annoyed by her chipper demeanor. I cringed as I was sure that if the physical therapist did not back off, my mom was going to take the walker and hit the girl with it. I remember my mom biting her lip and whispering under her breath for the young Asian girl to get the hell away from her, and that she could get around by herself. That was the same spirit and fight that I was looking for now. But, it was not there, she was not there.
After they gave her the painkillers on the first night of her second visit, she slipped away from us I suppose to prepare herself for the inevitable. I have often reflected that maybe she was preparing us with her silence. She never closed her eyes. The entire time she was in what appeared to be a coma, she never closed her eyes. I wondered whether this was a normal occurrence, but then again none of this was a normal occurrence for my family and me.
On the evening of April 11, 2011, after a full day by her side, I made the decision to go home and get some sleep in that it had been a rough few days and I was feeling the delirious effects of insomnia. My sister Aimee stayed with my mother that night. We refused to leave her alone in the hospital without one of us looking out for her. I had spoken with a healer that I had met nearly 5 years earlier and asked her to assist with another healing for my mother. I explained to her what was going on with my mother. In light of the emergent circumstances, she said that she would do it that night. I still had a lot of faith that everything would be all right. That somehow my mother would experience the miracle of a second chance. I believed that the healing session would somehow get to her spirit and convince it not to let go of her physical body yet. I wanted my mother to heal and return to us whole. We left the hospital that night after a few days of sleepless nights, looking to get some rest so we could come back with an added vigor.
The next morning I received a text from the healer setting forth that something happened but she was not allowed to share the information with me at this time. She would do so when she was given permission from her guides. I thought that this was good news for my mom. Subsequently, we received a phone call from the night nurse that we has hired to stay with her saying that we needed to come quickly back to the hospital. It was 6 in the morning, we got dressed and everyone headed back.
The events subsequent to her death were surreal. Who am I kidding the events leading up to her death were surreal. I remember thinking that the suffering that my mother was experiencing must have been what Jesus felt as he walked towards his death. My mother passed away right before Easter so it was not a total stretch that I would be thinking about the crucifixion of Christ. While this was different in that she did not have to physically carry an actual cross, her physical journey towards her last day was no less painful and no less symbolic. For she carried another kind of cross, breast cancer.
She was brought into the hospital that first night still able to communicate and still demanding that her needs be met. She was writhing in pain. Her legs were so swollen from the edema that it was not longer possible for her to find a comfortable position on the bed. I remember her reaching out and begging for relief. And, relief came in the form of a drug, a sedative that would cut off her ability to speak to us to tell us what she needed. God, how barbaric it seemed to me that Western medicine is so far from understanding this disease and how to care for the patients that were afflicted by it. My only hope for the future is that there are people out there who are looking for a better way. Perhaps, there are individuals out there who have been impacted in some way by this terrible disease, making it their lives mission to find a more humane treatment. That is at least the hope.
My mother spent the last four days of her life in a hospital bed with her eyes open in a comatose state. When she was gurgling to breath, we would lift her so that she could cough and not asphyxiate on her own saliva. I imagine that this must have been what it was like as Jesus hung on the cross, all his bodily fluid overtaking him as he bled to death slowly. My mother would come to reach her death slowly as well. And, how exhausted we all were as we stood by her bedside, getting reprieve to actually sleep in a bed when we could not take the deprivation any longer. However, my mother never had reprieve from her cross. She could not take a break from the anguish that she was experiencing. I felt as I look back, that I was one of the apostles who went up to Gethsemane with Jesus to pray with him through the night. As the story goes, Jesus was so fearful and needed the companionship of his closest friends. As he stayed up to pray through the night, the apostles slept. I often wondered whether I failed my mother by abandoning her in her time of need as we returned home to sleep? Did we give her permission to let go by showing her we could no longer stand by her side in her moment of greatest fear? Like Jesus, did she know her fate the night before, did the apostles and did we? Did we know that she would die he next day and went home to sleep anyway?
The night before she passed away, after praying by her side for hours, as stated before, we did return home and left a night nurse that we had hired to sit by her side and watch her. My sister Aimee also remained by her side. We were called back early the next morning, as there were serious changes in her vital signs. I thought perhaps this might have been a sign of improvement as her blood work showed an improvement in the liver. But, who knew the extent of the damage that the cancer had caused at this point and who knew the extent of the damage that the sedatives had caused over the last four days. My sister faced a different reality. Very early the next morning, the night nurse urged Aimee to call all of us to return to the hospital as my mother was in fact taking her last breaths.
When we got the call to return, I still did not believe that she was dying. I really believed that there would be a miracle of some sort. Then again, what kind of miracle did I expect after days of a struggle. We did not know if her brain was deprived of oxygen and we did not know whether she would be able to come out of the serious state that she now found herself in. Nevertheless, after receiving the call, we all got dressed to go back to be by her side. That morning, surrounded by her husband, her daughters and her immediate family, her soul released itself from this physical experience and she became a part of a spiritual dimension that we will not know fully until it is our time. My father and sister were with me in her hospital room. I lay on her chest, holding her hand. I don’t even remember at that point if there was anyone else near me. And then, it was over.
What came next is a blur. I remember my dad asking us to reflect on what we will remember the most of my mom. What an overwhelming question. I remember my sister and I commenting that the worst thing hat we could hear at this time was “I am sorry for your loss” and “she is at a better place”. When her oncologist came to pay his respects, he said just what we dreaded most- “ I am sorry for your loss” and “she is at a better place.” I looked over at my sister and rolled my eyes. Is this God’s idea of comic relief?? Or perhaps my mother, free at last, thought we needed a reminder of laughter and levity. While I feel a lot of compassion for her doctor in that he is tasked with caring for individuals who are facing life-threatening disease on a daily basis, I still wish that he had shown more of that same compassion when he was with her. But, ultimately, he is the one for whatever reason that my mother chose and placed in his hands her life and her trust. And at that point, there was nothing that we could do about it.
Seeing her lying there, it all felt so surreal. I could not escape. I wanted to crawl out of my skin and leave this dimension as well and travel with her to where she had gone. Instead, I just went under the food cart by the door of the hospital room and hid in the corner and cried and cried and cried. I witnessed things happening all around me as if I did somehow leave my body. I remember my family meeting outside perhaps discussing the details of what comes next, thinking how could they she just died. I remember a man visiting our room to deliver rosaries to each of us and wanting him to leave. I was tired of being nice and trying to make everyone feel comfortable. My mom was dead. This was unbelievable to me.
I did take one of the rosaries from the kind stranger. I remember wrapping my mother’s hands with a blue one that this hospital ministry brought to the room. In a small way, I was hoping that life would return. But, all I felt was coldness where warmth once rested. She had gone. How do you capture this moment? I had to find some way because otherwise I was not going to let go. I remember taking a photo of her beautiful hands so that I would never forget what they looked like. I figured that if I could not remember her touch, the visual would be something tangible that could jog my recollection. My father presented me with my mother’s engagement ring to hold for my daughter Ava as she was the only granddaughter. My father took her wedding band and put it on the chain that he wore to carry it with him always.
Not being able to actually speak, I sent a text to my husband to tell him the news of my mother’s passing. Then, he called and sensed the pain that he must have been feeling as well. When I asked, no begged him to bring our kids to Orlando so that I could hold them in my arms when they heard that their Grammie was gone, what happened next was something that I never fully visualized. He told me that he did not think that it was a good idea. I was in shock. I just expected that those that loved me would do whatever I needed especially now. I just expected that they would do what I would do in that situation, be present. You hear all sorts of stories depicting the drama between family members after a momentous moment like the experience of death of a loved one. I guess I would have liked to believe that my family would be different. But, we experienced our own drama that Tuesday morning and I must say that I am grateful that the bond we share is greater than any animosity that may have arisen from words said in the heat of the moment.
Let me be the first to say that we were all exhausted at this point in time. Traveling back and forth many weekends in a row left us on edge with little to no energy to spare. I am grateful to my husband for making the four hour trek to Orlando from Miami many times over the course of my mother’s illness, but at the same time, was very disappointed when that morning he tried to talk me out of them returning again. I must admit I was not thinking clearly, we were not thinking clearly. My sister Mary was not planning on coming back to Orlando right away and tried to convince me that it was not necessary for my own family to be there as well. As my mother lay lifeless in the hospital room, my father, thinking that it was best for me told me to go back to Miami and be with my family until the funeral took place. I could not process any of what was going on around me. All I heard was that my husband refused to come up with my kids, my sister was interfering with the decisions made in my family, and my father was sending me home. In my head, I was screaming and yelling at my mother for leaving me here, to be with people who just did not understand me, who were sending me away. Perhaps it as all in my head. Emotions have an uncanny way of clouding our perceptions of our own reality as well as the reality of others. Clearly, I am grateful that during a time of high tension and overwhelming grief, my mother stayed there all along to make sure that her family did not fall apart. Never leaving our side, even though it clearly felt that way. There remained and still remains love at the core of our foundation. It will never leave us if we never allow it to, even in the hardest of times. And funny, all I wanted to do was be connected somehow to her still and be with people who felt the same way. Clearly I was, just could not see it. I just focused on the fact that I was so close to her and she understood me so well and accepted me as I am., now I was being sent away so quickly after she died???? I felt at that moment that I was left with a new reality, one where I had a father who did not communicate well with me, and one where my sister was trying to control the situation even though she was not physically there. I was too absorbed in my own pain to open my eyes and see theirs as well. I was too involved with my own ego to see that this profound moment in time had my strongest allies weak at the knees. And, yes there was yelling in the room where my mother’s body waited to be taken away. Not at all like the beautiful serene image of calm and collected individuals paying their last respects. I really believe that it was not yelling at each other, but yelling at the injustice of this incredible loss. Then again, I am a part of an Italian family, who feels passionately and loves passionately. If we had to feel a little louder than most, that was alright to, for perhaps this was unfolding as it should. It is the experience that we had as a family that we cannot change, nor do I really want it to because I learned a lot of acceptance of others and empathy during that time. For I was feeling the pain of the loss and they were too, just expressing it to each other differently, and even that too did pass.
As tempers calmed and emotions settled a bit, we all bid farewell to my beautiful mother, saying our last goodbyes and praying that she was at peace. My father hugged me telling me that he loved me, something I desperately needed to hear. My sister told me that she did not want me to leave either. She too did not know how she was going tot face the next days in light of our tremendous loss. And, how was I just supposed to go back to my life, to work, as if nothing had happened???
For me, I was so grateful that my husband did agree to come that night with our children, something that I looked forward to as a way to heal and start to grieve buffered by love. But like I said before, this was still very surreal. It was not real. Perhaps I did not act in line with my highest self, yet how could I apologize for my behavior then when my feelings took on a life of its own. I certainly never intended to hurt anyone, I don’t think that anyone ever does in situations like these. I was just trying to figure it all, as I coursed through the spectrum of anger, fear, grief, and sadness all at once. My feelings and emotions taking on a life of their own, control of them running away from me at that time. Others also perhaps did not know how to act as well. This was a new experience for all of us. Hurting has a way of bringing out the best and worst in people. This is true, as I have experienced it first hand. Asking for forgiveness and forgiving is the only way I know how to get past what has happened in the past so that we can all learn from our experiences and move forward. The bottom line is that we all lost a very important and special person that day and we all were doing our best to cope. The bottom line is that I love my family beyond belief and we all needed to get past any and all resentment for what happened during those days and come together to support and love each other to prepare ourselves for what we were about to face.
When we finally left the hospital and returned home, I did get an email from the healer that I had spoken to the night before. What was said in the body of the text gave me great comfort at a time when I needed it most. In pertinent part, the e-mail read as follows:
“After Jesus had come through me and we laid her body back down, I felt us
Move up to the top of her head and give her a halo. It was all really
Also, I’m not sure if I conveyed that as I was going through this with her,
I just knew that she was aware of what was happening. I could really feel
It. I thought you would like to know.”
After reading this, I felt in a small way that I was given a gift, a glimpse into the great mystery of life. I was given a glimpse of what our faith tells us is waiting for us as we become purely spiritual beings again. As Wayne Dyer describes, “going from the now here to the no-where again.” It was her time to move on to the next realm. This information gave me a lot of comfort in that I had a sense that it was a beautiful and peaceful passing. Still, I was having such a hard time trying to figure out where I fit in with my family. It had been such a long and exhausting experience and I remember being terrified that without my mom, I was not going to be accepted for who I am with my dad and sisters. Out of fear and anger, I remember writing to my best friend the following that summed up how I was feeling at the time:
On Fri, Apr 8, 2011 at 5:50 PM, Margaret wrote:
We just left for Orlando- my heart is breaking a little more each day- keeping the faith, strength and hope alive for her-
On Apr 8, 2011, at 6:53 PM, Lisa Terranova Lommerin wrote:
Keep hanging in there bella! I love you.
On Fri, Apr 8, 2011 at 8:42 PM, Margaret wrote:
Everyone is so dismal in my family! I am fighting to stay hopeful- I am so angry right now- I wish I could just hug my mom- I do not know what to do- I feel like a pit in my stomach- I want to throw up!
On Apr 8, 2011, at 10:03 PM, Lisa Terranova Lommerin wrote:
That’s good. Don’t give up hope!
On Sun, Apr 10, 2011 at 4:31 PM, Margaret wrote:
I want to run from this place- take my kids and never look back – leave and never come back to Orlando – they have never loved me in this family like my mom and I don’t want to be a part of this anymore! Where is god in all of this?
In a labor of love, my husband drove the four hours back to Orlando and showed up for me that same night. I fell into his arms. As my children looked to me for answers, I explained that their Grammie had returned to heaven and now would be our guardian angel to watch over us and protect us. I held both Michael and my daughter Ava in my arms that night. Holding each other through the challenging times made it easier to deal with the pain and welcome the joy back into our lives, accepting the slow healing process that would soon be a part of our reality.
The next two weeks were even more of a blur. I stayed in Orlando to help plan the funeral arrangements with my sisters. My children stayed by my side as we planned the ceremony that would honor my mother. Tangled, the last movie my mother saw in the theater about the adventures of Rapunzel, became a favorite for my daughter Ava as it would play over and over again accompanying the child in all of us over the next few weeks. Finding levity in our despair, keeping play as a part of our days, the children were so essential to getting us through that crazy time. And, I had dreams, vivid dreams. And in my dreams, I heard songs not fully understanding their significance at the time. I have come to believe greatly in the symbolism and messages that come from our dreams. I have come to believe that information is relayed to us from our loved ones through our dreams. I have come to be very grateful for the connections that we can make through communication received through dreams. And, my mother came to me in my dreams over the next few days assuring me that it will all be alright. I heard the song “A Horse with no Name” and can only decipher the significance as it relates to me, never clearly understanding the message that I was given.
It goes as follows:
“A Horse With No Name” by America
On the first part of the journey I was looking at all the life There were plants and birds and rocks and things There was sand and hills and rings The first thing I met was a fly with a buzz And the sky with no clouds The heat was hot and the ground was dry But the air was full of sound
I’ve been through the desert on a horse with no name It felt good to be out of the rain In the desert you can remember your name ‘Cause there ain’t no one for to give you no pain La, la …
After two days in the desert sun My skin began to turn red After three days in the desert fun I was looking at a river bed And the story it told of a river that flowed Made me sad to think it was dead
You see I’ve been through the desert on a horse with no name It felt good to be out of the rain In the desert you can remember your name ‘Cause there ain’t no one for to give you no pain La, la …
After nine days I let the horse run free ‘Cause the desert had turned to sea There were plants and birds and rocks and things there was sand and hills and rings The ocean is a desert with it’s life underground And a perfect disguise above Under the cities lies a heart made of ground But the humans will give no love
You see I’ve been through the desert on a horse with no name It felt good to be out of the rain In the desert you can remember your name ‘Cause there ain’t no one for to give you no pain La, la …
Maybe the message was simple and beautiful as it followed what had just happened to my mother and to us. She suffered like the heat of the desert, she met with death as the river dried up, and then her spirit was free as the water symbolizes a renewal of life. Now, it was our time to give love to each other and also feel the release rom the pain that she had experienced. For, with her death, she was no longer in pain.
It was a very mystical time. I felt her presence in the wind as huge gusts would pass and the leaves on the trees moved forcefully. I felt her watching over all of us, not leaving us quite yet. And, my father even shared with me that she came to sit next to him on the edge of their bed, reassuring him and loving him still. And then there was Zachariah, the sheltie that my mother and father had adopted towards the end of her illness. He was a quirky dog afraid of so much, but offered my father companionship during this very difficult time, never leaving his side. He would bark as if he knew there was a spiritual presence or energy that none of us could actually see. He would not leave my father’s side somehow knowing that this was his job, to take care of my dad for my mom.
Then, as a family, the Nocero tribe of my dad, Mary, Aimee and I, we went to the cemetery to make the arrangements for the internment and to choose the location that would be her final resting place. My mother chose to be cremated, so we had to pick out the urn as well. We chose the Madonna holding Baby Jesus, the same photo that hung over their bed for nearly 40 years. We chose Live, Love, and Laugh as the statement to remember her by. We chose the words that described her life in her obituary that would announce to the world that heaven claimed another angel. How surreal it must have been for my father to pick out the place where he too would be buried right at her side. Of course, because the irony was not lost on us, there was lot of laughter as well. And, there was a lot of synchronicities to confirm that the place we had chosen was the location that she would have wanted. Right above the square of the mausoleum was the final resting place of a family with the surname Santangelo, my mother’s maiden name. It was in the peace sanctuary, such a beautiful and happy place even though it was a cemetery. Right around the corner was an Italian restaurant called Positanos, one of my mother’s favorite places in the world. It was my dad and his girls facing this together. There were a lot of beautiful moments even in our pain. I am so grateful that I can appreciate now as I remember. Together, we chose a beautiful nameplate for my mother showing the symbol of marriage that was her life’s work and a picture of a sheltie, representative of our animal guides.
When the day of the funeral arrived, over 800 people showed up to remember the beautiful life that she had lived. She had touched many people and family and friends showed up to pay their respects to a woman who knew how to love. It was a beautiful celebration of her life. As she made it a point to welcome many priests into our family, it was quite a sight, perhaps a distinction that few members of the church are given; over twelve of them that were dear friends honored her on the deus as we all bid her farewell. My sisters and I presented the eulogy and her grandchildren elegantly stated how much she meant to each and every one of them. Right before we started to speak, the electricity went out in the entire church. I always believed that when we die our energy just changes form and I thought for sure that my mom was making her presence known right at that very important moment. Who knows the truth, I just know that it was quite impressive to have something like that happen right before her girls were to speak in front of the church community. At the very least, we able to pause and really take in the enormity of the moment as we honored my mother the best way we could. Each of us sharing from our heart, each of us reflecting on the beauty that was her life, finished off by my sister Mary leaving the message that now as a freed spirit she is able to shake things up in heaven and perhaps set the papacy straight on the direction of the Catholic church. Whether it is true or not, we all laughed to ourselves knowing that my mother certainly was a force to be reckoned with.
My beautiful friends showed up for me as well. They were present when I needed them most. I looked up from the altar and saw them looking back at me, telling me with their eyes that they shared my pain and that they loved me dearly. These friends appeared from all different stages in my life. There was a caravan that drove up from Miami to represent the love that would surround me when I went home. There were my friends who flew in to be with me from out of state from my college days. There were friends that appeared from my childhood and teenage years, people I have not spoken to for what would seem to be a lifetime. These friends remembered the love my mom showed them and remembered how it impacted their lives and wanted to be present for us in our pain. During that time, we received so many cards and so many phone calls. There was an outpour of love in our loss. And while it was very important that they were there for me and for my family on that day through their physical and spiritual presence, the message that remains with me over time has stayed with me, I am not alone nor was I ever. I am intimately connected with so many others, even in my most challenging of times, I can hold onto that love that surrounded me on the day of my mother’s funeral mass and for always. It is that important to show up for others to continually remind them that I am here for you and that I love you. We gathered for a huge celebration afterwards in the parish hall. We enjoyed an Italian feast, had an area set up where we displayed photos that depicted the different stages of her life, and encouraged people to come up to the front and speak about how she impacted their lives. It was a true celebration.
After the funeral service, the next day, we honored her in a private service where we gathered as a family to pay our last respects and released butterflies. I suppose this was the part of her story where she was freed from her pain with her death and her soul was resurrected into what we believe to be called heaven. I imagine that is what the butterflies symbolized for us. We released the butterflies with the awareness of my mother’s transformation from a caterpillar into something even more beautiful. This transformation certainly must have been a welcome experience for her after the suffering that she endured. Did she experience ecstasy? I believe in an after life and I can only imagine the glory that she must have felt when she met again her relatives that had passed away before her. We still felt her presence. She invades our dreams. She reminds us that her love is still present. But, the reality of this loss of communication of a mother and daughter was too much for me to bear. I felt that God abandoned me. I felt the loss of my faith. And, I felt that life would never be filled with joy again. It was time for me to leave and return home to Miami. It was time for me to face this new life without my mother. It was time for me to walk though the darkness of my life in search of light as I chartered my way through a grief I had never known before.