Freedom and Trepidation

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It feels like this: You have been living in a wire cage for months. You have a bowl of food and a bottle of water, which seem to replenish themselves, and a decent bed. You can see through the bars, contemplating the things outside. Thinking of all the things you might do “out there”. You wonder about the choices existing in the freedom of time/space, as you complacently (or not) perform your daily routines, knowing that one day, late in June, the door will be open, and you will be free for TWO MONTHS plus a few days. You know that, most likely, this freedom will expire in September and you will return to the same place, same bowl, bottle, bed. But will you have changed? Will you be happier and better able to cope?

Summer for a teacher who is, to borrow a phrase from an adjunct professor I once knew, “untethered”, begins with trepidation. For me, just like one summer a couple of years ago, it is also beginning with vertigo. No sooner had I walked out the door on the last day of school when my head began spinning so to speak. I went to sleep early and sick. There are a few issues to consider here, but one is that the free time to come has scared me a bit.

Everyone has an inner life, and a past which is not completely dealt with. My inner world waits for me. Susanna, by the way, is there. She is there somewhere always but in the free summertime I can hear her more clearly.

I relaxed yesterday, hoping to heal my dizzy woes, and turned on a Netflix movie called “Brain on Fire”. The protagonist was named Susanna(h). With an H. I watched Chloe Grace Moretz portray her, a likeable young lady, and relished hearing everyone say this name. I became lost in the idea of an alternative story, as I sometimes do. A story about my Susanna living her life to become twenty one, to grow up and graduate from school and have a job and all, to have a woman’s body, and then be stricken with a brain illness. A tragedy, but with more years for me to be with her. If she had to die, at least could it happen later?

Other times, I imagine writing another story. Susanna has had her brain aneurysm and is cognitively and physically impaired, not able to speak again, living in a wheelchair. But she is happy and smiles when I tell her I love her, and she lives longer than me. This is something else that might have happened. Of course, I wonder too what would be if my daughter did not get sick at all. This, unfortunately, though what I want, is something I cannot see anymore. Frankly, imagining that hurts too much. I can see up to the horizon beyond my wire cage, but not the majestic mountains beyond there, where I am with her. That will have to wait.

So, I kept watching and saw Susannah with an H suffer, her parents not getting answers about what was wrong. Then, I saw the smiles as healing became possible, and Susannah with an H got better and used her memoir to help others (a true story, worth knowing about). I cried the tears I had been storing up and wanting to release as soon as this June approached its end. I cried because my Susanna did not get better, she died, after less than a day of anyone being aware that she was sick. When I have fewer obligations, I let these kinds of tears out and I think they will always grow back. There is no end to this, nothing makes it better.

I cried also for this young woman who healed and noted that she had become stronger. You know what? I have done that too. I have done it for me and for my Susanna, the one without an H, but the one who walks with me every day and survives in my heart. I made it through a school year and this year I did not feel too anxious to get out of bed in the morning, even once. I talked about a future and began to prepare for one. I did my job and earned my pay. I lived a little, played the flute, read and wrote some and took care of myself and my family. I am unequivocally still here. I cry for this too, because I did not know if I could make it this far, but here I am. No longer dizzy this morning. I miss you Susanna, but I know you are with me, and that you and I will continue until we are completely free. I will see you on the pinnacles, and every step along the way.

 

A Greenwood Cemetery Story

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greenwood photo“When Tibor died, the world came to an end. And the world did not come to an end. That is something you learn.”    -Maira Kalman

The air does not feel the same at a cemetery as it does at a park or other green space. Whether you have a somber purpose to be there or happen to be walking by on a peripheral sidewalk, the atmosphere is quieter and your mind attentive to where you are. Even if the stones are hundreds of years old, there is no escaping mortality when you can see graves. You not only smell the purposed earth, but you are aware of the possibility of your own return to it.

Yesterday was the third time I visited historic Greenwood Cemetery. The first time was April 30, 2014, when I stood next to my mother and tried to shelter her from the driving rain as my five- year old daughter Susanna’s body was buried in a grave with her paternal grandmother. I do not remember when I swore that I would never again visit this place. It may have been on that day, but more likely was during the following months during which it dawned on me that this unthinkable nightmare had indeed happened. I built my resolve on my belief that Susanna was with me in spirit (which I do believe) but moreover, inwardly, I felt that acknowledging her grave would be like giving up. I refused for my daughter to become a headstone, erasing her and relegating her to the same past as, say, the revolutionary war heroes I studied in my New England elementary school. We visited their resting place to make gravestone rubbings with large black crayons on rice paper.

I remained firm on my avoidance until now, although I agreed on one occasion to join my significant other to visit on Susanna’s birthday in January of 2016. I spent only a moment outside of the car, doubled over in grief and got back in to weep, avoiding the heaviness in the cold air. This strengthened my vow to stay away.

Despite my resolution to never do so, I have come a long way in accepting Susanna’s death. There will never be a moment when I do not wish she could be here, erasing what happened. There will never be a day where I will not wonder what we would be doing together or wonder what kind of spectacular woman she would have become. But I do acknowledge that the person whose body Susanna’s spirit inhabited is gone, just as we all will be when the time comes. I made the decision to go to Greenwood Cemetery because I did not want fear and denial to keep me from any place. I also had begun to wonder if there might indeed be some peace there.

I am not from Brooklyn originally but have made various parts of it my home for nearly twenty years. This is why the one bus and two subway trips were a snap. I needed to make this pilgrimage alone, on foot. My first two hazy visits to Greenwood did not entail me going to Susanna’s spot alone, nor remembering at all how to find it. I had read the map on the internet and knew the section and numbers, but these are not marked. I walked up the sometimes steep, picturesque foothills, feeling some sadness and a hollow drop in my stomach. There are peaceful names like “Lake Road” and “Magnolia Trail”. Remarkably, though, I felt no resistance to being there. Above all, I marveled at the miracle of healing that has happened within me. Grief has changed me permanently, but I believe always in life and purpose and the universe’s ability to heal, especially when you ask for it. Things are not perfect and never will be, but somehow, I have survived.

I followed the map on my phone and found the right section. I could not remember where to look for the grave. For some reason, I remembered standing on a hill at the burial, but this did not make sense. I called S.O. to ask for help, but we sometimes struggle with our language barrier over the phone. I wondered if I would have to go home without having reached Susanna. I wanted some supernatural assistance, which would have seemed fitting. An inner voice, a fluttering red breasted robin. I asked my mother-in law and Susanna for help from beyond. Help arrived in the form of a groundskeeper driving by, who absolutely could help me. I do live in the physical world among the living, after all.

I scouted out some trees that I will inquire about adopting in Susanna’s memory, which was part of this mission. As I left, I thought about the reality of choosing a pink flowering tree, which I am leaning toward. In the years to come, I would need to visit during this season when Susanna left, or I would miss the beautiful but transient blooms. I think I am okay with this. This cemetery is peaceful. Quiet, uncrowded and an acceptable place to grieve and cry and exist in more than one world. I think the first time I was there, in the rain with my mother, I remember standing on top of a hill (there is no hill) because I needed to picture myself detached from the exact spot, elevated and removed. From there, I watched my partner weep right into the rainy grave, but I was not ready to be there. Not yet.

S.O. has returned, at times, to visit Susanna and his mom, on holidays when it feels right to him. We have figured out how to grieve both together and in our own universes. Each time he has brought home loaves of bread baked the way he likes it, airy inside with hard crust, and told us they were from Susanna. I stopped at the bakery and bought some bread. I headed home to my loved ones, including the amazing son who has been able to stay here with me. I continue to be the mother of two children, who has been broken but is still here, here to tell this tale. There is more to life than life. Thank you, Susanna, for coming here for as long as you could. I love you forever.

 

 

Pinnacles and Kaleidoscopes

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I have not much wisdom to share today. There has been much living going on at our house, but as this day, Susanna’s fourth anniversary on the other side, has approached, I have not many  words. I am preparing to begin the real work which I hope will lead to a memoir. I look forward to this work, and have known all along that I want nothing less than a book, the best book I can write. For me and for Susanna. Being that I am not feeling very bloggish, I dug this up from the summer of 2014.

Susanna today I am wishing so much love for you. Love much bigger than a million suns. I care very little about most things. I am somewhat afraid to tell anyone this, because they might worry about me. There was the dream I had where you described heaven as “pinnacles”. Are you dancing and bouncing over golden rainbow mountains? I was at Coney Island with your brother, by the red spinning cars which weave and dip around a tent-like center. Around, around, I watch for him and watch the waves of light and color and sound and feel the workings of the universe. I believe there are co-existing worlds of waves and color. I believe that matter is energy moving at a slower vibration, soul incorporated in bodies. Just like I believe solid matter is full of molecules in particular motion, as I learned in elementary school science class. Why, dear Susanna, do I have to be here to talk and worry about so many things which now seem petty and will not mean anything in eternity? I cannot. Perhaps people may miss the actions and words of the me who lived in a finite human world. However, there will be no going back because in that limited time/space you are not there and that is not only unacceptable but pure rubbish.

When I dreamt that dream, Susanna gave me two words. One was pinnacles and one was kaleidoscope. I could not articulate that I remembered kaleidoscope until much later, it did not seem like the right word. I also remembered that when I asked her what heaven was like, she said, “wonderful”. I picture Susanna (as I try to avoid dwelling on memories of ambulances and cemeteries) running through snowy mountains, just like Elsa, belting out “Let it Go”. Mountains, pinnacles and rainbow fractals. Science provides sacred knowledge and evidence for many things, but has only scratched the surface of what is on the other side. No one knows definitively but we will all know more someday. Save me a spot, Susanna. I love you.

The Good Things of the World

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There are drills, as there now are in every school. We call them “lockdown” but they might also be known as “active shooter” drills. I wonder about the missing pieces in the plan, such as how we cannot put full grown students in wheelchairs into cupboards to hide them. We can not silence students who make involuntary noises throughout the day because of their disabilities. And, can you really follow procedures that save you from assault rifles anyway? More often, I think of how I do not want to survive any more traumatic events. I am not sure I can do it anymore, begin again to heal the PTSD once I wake to it. Sometimes, I feel one hundred years old and beyond ready to leave.

It is coming on four years now since Susanna died. Without a doubt healing has happened. To try to explain it, there is peace existing alongside the immense gap where I thought she would always be. I had never imagined a world without her, but this new reality is less terrifying and fretful lately. Bushels of worries and concerns have been lifted, aspirations and appearances I used to care so much about have almost disappeared. I have always been pretty good at tolerating others, and more than ever I am able to let people be. I observe people becoming stressed over situations that are quite real to them, but I feel out of place because I do not share the same feelings. I am grateful for this reduction of anxiety, and grateful for the courage I have mustered to go to therapy, refrain from anything harmful and let in the love that can help. I cannot survive any other way.

I still do many of the same things to soothe my heart every day. I still painfully miss her. Walking, music, fresh air and trees. The truth remains that, for five short years, Susanna’s life was happy and well-lived. I remember the details and the details make me cry, but I have not lost them. Still, I am here to make my son feel loved, listened to and cared for. Still, I live with my children’s father, who often looks at me the same way he did when we met twelve years ago. I am even creating things, I even see a future which includes things I want to do.

Reflecting, this world has severely disappointed me these last four years. Horrendous news events, an unthinkable government situation and disappointing behaviors of large segments of society. I have already lost my daughter. My mother has reached almost ninety years old and has lost her ability to make sense of the world for more than a sentence or two, and her ability to take care of herself after so many decades of independence and people relying on her. I find this unfair. There is so much I do not understand.

The wounds of what I saw happen to my little girl, on that night when I knew her heart had stopped, along with all the others I have accumulated from living for more than half a century, these are real and these are sacred parts of my life. Susanna’s death has made me mortal, all day long. I do not need to be reminded that anyone can leave at any time, because they have the flu or because they are shot in a school or shopping mall, because they have a heart attack or one of the cancers we try to screen so often. I know this. What I know less about is what comes after we leave here. I am convinced, though, that it all will mean something. I am convinced that listening to the ways the earth and sea and ethers communicate, the song of the birds, the inspired or mysterious words that pass through the lips of our friends, the art in the museums, the stories, the good things in the world. I believe these things can save us while we are here, and these are things we cannot really lose.

Rain, and Surprises

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I feel surprised lately. Surprised about how I feel about things, and about how I have changed my mind about things. Somewhere within the vast trail of self-help books in my past, there was discussion of how “changing your mind” is more literal and important than how it sounds. We all come here to change and heal and grow, and I believe this even on days which I do not. Brain and soul and body, we are all beings in search of healing, and healing happens.

I did not realize until a couple of weeks ago that there were so many videos and recordings of rain sounds available on all my devices. There is soft rain, heavy rain, rain on the ocean, rain while trains are approaching. Rain in the city with an open window. There is rain on a tent or rain on a car, which has always been my favorite. What surprises me is how real my responses and feelings are when I hear the sounds. They cannot be expressed in words. This is true for both the real experience and the electronic version. The only difference between the two is that with one I do not have to wait for a rainy day.

Perhaps I have arrived somewhere now where I can tolerate being here, on this earth. Perhaps I am becoming unfrozen during this cold January as the light begins to come back. I do not think there is much pain to be unfrozen because pain has enveloped me, followed me and defined most of my moments for the past few years. There are tears falling inside and outside along with all the droplets and drizzles which I stream, but there always are and the difference is that I can hear music in them. I can feel a cool and swirly breeze. If I dare say, the tears are coming with some peace and joy. Despite everything, this earth experience brings me joy. This will always surprise me, but this is real.

I think I am on the cusp of something. I feel cuspy. I do not know where I will go. I do know that I intend to reach out and take more things which I like, and which make me feel good, because I will need this to offset the sadness which I will never erase. A mediocre life will not be tolerable if I must live it without Susanna. I want a bigger life with more spaces to find her, like the spaces between raindrops when they ripple in a pond, or the spaces between the curves of waves on a stormy ocean. I intend to find her. I do not want to pass time in a bubble of numbness. Our dead, and our guiding angels and forces, speak to us always, but we can hear them better when we get out of drudgery and oppressive nonsense.

I will even say that for the time being I am obsessed with my rain sounds. I plug my ear buds in and play them at any old time. I look forward to hearing them when I go to sleep at night. They will stream on YouTube with lovely imagery for ten hours or until someone turns them off. This habit is supported by my family. My S.O. and son seem to understand. I have always said that love is mysterious. I used to mean romantic love but love between any people is mysterious and much bigger than we know.

My son is a wonderful, kind soul (this is not a surprise to me, because he always has been). Recently I have said this to him, because I see him trying to save me and protect me when I am sad: “You do not have to worry about me. I will be okay. It is not your job to save me. There are plenty of adults to help me, you just need to be a kid. I will be okay.” I mean these words.  I have never wanted anything more than to change his life to one that does not include the loss of his sister. I know it is wrong for a child to feel responsible for my pain, and I will continue to say this to him and mean it.

And as I have said these words, he has interjected and repeated over and over, “No. No.” He will not agree that protecting me is not his job. I can neither change his loss or control his desire to save me. This I cannot change. This is mysterious. This is his way to love.

This is my daughter on a rainy day. I continue to be her mother. I think about her as often as any mother thinks about her child, nearly constantly. She is on the other side and I am here, and there is more to life than life.

830431_10200196436267666_1286063059_o

Wendy

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My son has a red lump on his left arm. It rose a bit at the site of a flu vaccine he received yesterday, when we visited the pediatrician for a benign ailment which has now disappeared. We waited for the doctor and I read the poster with charts: “Quantifying Morbidity and Mortality for Influenza”. (I know too much about morbidity and mortality, so I said yes when the vaccine was offered). A short time after, as we left, he sneezed. I asked if he was reacting to the vaccine (he was not), and, forgive me, my mind raced to the possibility of him having a rare deadly reaction and dying right there on the tiled floor. I imagine frequently that those I love will suddenly die. I see this partly as a feature of PTSD, and partly as direct knowledge which some people can avoid. This was a milder episode of panic than I sometimes experience, especially since I was already in the presence and consult of a doctor. This is a doctor who has been to the edge of hell together with me, so she understood.

When I was growing up, I always had knowledge of my first cousin, Wendy, who died long before I was born. This happened before the discovery of a vaccine for measles. She had the measles, with complications, and she died. She was five, just like Susanna.

Shortly after Susanna died, I sent a Facebook friend request to Wendy’s sister, who I had met once and knew little about, other than the appearance of her smiling young face in a couple of family photos. She accepted, herself ill and near the end of her life, and expressed her sorrow to learn that “once again tragedy had been experienced by the Freer family” in this way. Death itself is not a tragedy. We all die. The death of a child is a tragedy because of the unending pain it causes. I do not know that Susanna, in her location on the other side, laments not having lived longer. I tend to doubt that. I never will live a day without considering her absence a tragedy. My life is not a tragedy overall, but there will never be a resolution which does not include a missing piece, one which has left a hole with a painful jagged edge.

Many people think of Susanna, and feel heart- broken knowing what happened to us. Her death rippled and reached many, even those who did not know her. My family and friends grieve for her still, in their own ways. There will be times that they think about her, and times that they wish things had happened differently. For me, time moves on, but Susanna’s death is always there. It will greet me every morning, and color every event. In some ways, it will make me love a bit deeper and even seize moments I may have missed. It will make me less likely to attach importance to things which are not important. It will not remove me from life or the truth, it will make me reflect them more honestly.

This is something I wrote a few years ago.

When I go to heaven, I hope I can do the following things:

  • Make a box of macaroni and cheese for Susanna and watch her eat the whole thing. We will have come home before her father and brother from the playground (Susanna will not be crying like she used to if she had fallen or become tired, and I will not feel confused and bored, nor will I be missing her in despair like now. This is heaven, after all). We will watch an episode of “Peppa Pig” with that song in those beautiful English accents. “Peace and harmony, around the world…….”
  • Open a cassette from one of those long plastic boxes from Caldor, put it into a boom box and play it over and over again because the whole thing, every note, is perfect and all I can think of is “Again!” It may be Bruce Springsteen, or New Order. It doesn’t really matter.
  • Have many massages with hot towels and aromatherapy. Or the equivalent of that for someone without a body.
  • Talk to all of my students who cannot speak now. I want them to have the opportunity to comment on whatever we did in class, at least once.
  • Talk to my uncle and aunt who I never met, and tell them I am so sorry they lost their five- year-old daughter to the measles because I know how they felt (though they are dead, and I am hoping the dead have healed from losses. I want to do it anyway). Then jump over to thank whoever invented the measles vaccine.
  • Perhaps float in clouds made of vanilla ice cream, like I used to imagine when I was Susanna’s age. I digress.

 

 

 

 

 

Ordinary People

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Johann Pachelbel’s Canon in D. I first heard it in 1980, after it was mentioned in my freshman English class by the name by which I will always know it, “the theme from Ordinary People”. Ordinary People is still one of my favorite films. The story of a family who must come to terms with the trauma of a child dying, and begin to heal so that they can save each other from despair. I did not know, in 1980, that this situation would become ordinary for me, too.

On this Saturday before Thanksgiving, there is a lovely rain hitting my windows. I became lost tonight in that music of rain as well as some classical pieces, including Canon in D. In a surprising turn of events, I have resumed a hobby of playing the flute, after putting it down in ninth grade. I forsook band to take an art class (I would say that was an auspicious choice).

This all came about because my son had decided to learn the clarinet for his school band. Next thing I knew, I had ordered a flute from Amazon and begun searching up songs every day. I sit with my laptop in front of me and plug away, mostly at the first pages of things, which are free. Today I found Stairway to Heaven. Rock music melodies, without the vocal expression, amplifiers and fashion, are not as exciting as Bach or Mozart for a novice flutist. The notes miraculously reached my eyes and brain when I started again, and my fingers jumped into position as if 37 years had not flown by. I refer to a chart sometimes, but I have unmistakably kept some skills for all these years, beneath the surface.

This fall, with the short sunlight and long sadnesses, has been taking a toll on me. There seem to be few answers to my “why” questions. Why do people shoot up churches and elementary schools, and commit cruel and disgusting acts against others? Why has mankind chosen greed and nearly killed the planet? Why does my life feel like pointless drudgery, living to pay bills and crank out meaningless chores? Why do I have to do this, navigate this world with this horrendous, excruciating pain left inside of me in place of my precious daughter?

I need this opportunity to escape and peck away at the tiny notes. I need to be a part of something old and big and beautiful, accessible by a code developed long ago. Above all, I need to say things which words cannot. I need to breath my tears and turn them into songs. I did not plan the twists and turns leading me in this strange and complicated life, but here I am. I must do something, so why not do something that can make me feel good, and maybe someone else too? “I knew, if I had my chance, that I could make these people dance, and maybe, they’d be happy, for a while……”

Susanna was here, such an example of life well-lived. When she was a toddler, she would wake up early, singing, unable to sleep because she needed to sing so much. If you are lucky enough to have a child in your life, you have the world in front of you. You have the magic of cathedrals and mountains and oceans and cities, beautiful cities lit up like New York when you are on the subway rising beside the Brooklyn Bridge after dark. You yourself used to be a child, and you are the same magic as the sound of rain, and the glistening spectrum of each drop on a smooth surface. It does not matter what is happening or how you feel, still you live.

I don’t know why, why the terrible things. But I know why I must survive. Because life. Because the world. Nothing helps, nothing erases this loss I am faced with always, but living is worth it because it is still a beautiful world even on the worst days, the ones where all seems flat or even horrendous.  And there is so much more to come.