Zebra's Child

Living With Common Variable Immune Deficiency and It's Autoimmune Friends

Tag: Grief

Tidal Waves

My husband and I are in the midst of a multitude of changes in our lives. Not little changes like the new, clean bedroom carpet we installed to replace the 15 year old one that bore the brunt of many accidents our puppy had when she was new. No, I’m talking about huge, sea changes. The tidal waves. The ones that smash into to you and pull you under and leave you desperately struggling toward the surface, hoping that you can reach the air before you lose consciousness and your lungs fill with water. The events in life that you survive, but leave you forever changed.

Due to various medical conditions each of us has (in my case, CVID), each of us are exhibiting symptoms and illness that are more typical of someone 10-15 years older than we each are. Admittedly, our children are in their 30’s, and it’s true that we would no longer be considered young, but we’re not considered old either. We in fact know several people 15 – 20 years older than we are who are in far better health. Certainly each decade of aging after age 40 or so leaves your health and physical strength a little diminished. But it is especially hard when it catches you unaware because what is happening to your body shouldn’t be happening for at least another 10 years. The poor balance that causes falls. The eyesight that’s no longer clear. The job loss due to poor health, the surgery that didn’t go well, the occasional inability to make it to the market when you need food, the necessity of caring for an injured partner when you yourself are ill.

So many things that taken individually seem small in and of themselves, and indeed might be if they were happening to only one of you, but they are things that become insurmountable when when added together between you both. They start out happening here and there, but then one day you realize that some of the simplest tasks of daily living have consistently become amazingly difficult. You go on with the business of living as best you can, but there are empty spaces that used to be filled, and you realize that you didn’t fully notice the common things. The little things that bring glory to everyday and you don’t notice that they are there and a glorious until one day they’re not. Then you realize that you didn’t say goodbye properly, or whisper “thank you” often enough for the blessed ordinariness of each moment.

And then with one thing and another, and all those ordinary things that you that you took for granted but can no longer reliably do, you one day realize that you have to give up things that you deeply love and can’t image living without. You start by changing the little things, the things that won’t cause you huge amounts of grief. You give away a single large piece of furniture that was causing one of you to trip and fall, and you hope and pray that that will be enough. Enough to enable the two of you to go on with life in the new normal. Then you find that you have to make another change, and then another. And gradually you realize that none of these little changes are going to be enough, and you are going to have to change major portions of your life. You think you can’t possibly, but you do. You do because you have to. But it hurts. It hurts when both of you age before your time. All you want is your old life back, and things to be as they were. But there comes a time when you know that they never will be. And what do you do then? How do you navigate through a series of decisions that you know are going to cause you such pain in the process of letting go?

Grief

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Arlington National Cemetery, Arlington, Virginia

I have returned home from burying my mom in Arlington National Cemetery in Virginia. For those readers outside the US, Arlington is our national cemetery for soldiers (and their spouses) who have died while on active duty or are fully retired from 20+ years of active service. It has been 6 months since her death, but things take awhile with Arlington. The last 6 months have been difficult for layers upon layers of reasons, with no time, energy, or emotional reserve to write. Our lives have been a swirl of emotions and change, for reasons in addition to my mother’s death. I’ll have to unpack all of it bit by bit, though I don’t know how much of it I will do publicly. The trick as a writer is to write from your heart without giving away too many pieces of yourself. Always a tricky balancing act.

What I can say now is that it has been years since I have been to Arlington, and I arrived with certain expectations. I expected Arlington to be full of sorrow, much as the US Military Cemetery of World War II was in Normandy, France, which we visited last year. I also expected my mom’s burial to be wrenching, because the anticipation of it had opened up fresh grief. What I found instead was that Arlington is actually a very comforting place. Perhaps that is because my grandparents are also buried there, as are some of my husband’s family. It feels familiar, even though much time has past since I last have been there.

Perhaps the difference also lies in the fact that that all the soldiers buried in Normandy were cut down in the prime of their lives. So many of them were 18, 19, 24 years old, with their whole lives ahead of them. In France one feels the death of dreams amidst the knowledge of the bravery and sacrifice. It is a place to be reverent, a place to be grateful. But it is also a place of regret and deep sorrow. And while Arlington does indeed have graves of soldiers who have died in war, the majority of the graves are of those who have lived full lives and have died after they have retired from active service. Most of those buried in Arlington lived to an age where they were able to look back on a long life and remember days fully lived. I know my mom was ready to let go of pain and the struggle of her failing body, and that also brings comfort. But make no mistake, grief is a long road, and is not easy, even when your loved one was ready to meet death.

 

 

Let Us Not Forget

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Les cierge votives dans L’église de la Madeleine, Paris, France     ©Zebra’s Child

I have more posts in my head about the Charleston mass shooting, but I am finding them difficult and painful to write. Many of my thoughts are tangled and sorting through those tangles is taking time.

But at the moment I want to call attention to the fact that we need to honor two sets of victims of the mass shooting at Emanuel African Methodist Episcopal Church in Charleston, South Carolina: those who were murdered and those who survived.

We are good at remembering the dead. That is in part because of the horror we feel when we think about how nine innocent people were gunned down in a place of worship simply because they were black. We are also good at remembering the dead because we think the dead no longer require anything of us. Few things could be farther from the truth, but that is the subject of another post.

We are not so good at remembering the living. We have seen pictures  of those who died, and have both read and heard their names many time. That makes it easier to think of them as individuals. Remembering the survivors of the mass shooting at Emanuel AME Church is more difficult. To begin with, most of us don’t even know, or can’t remember, how many survivors there were. I certainly didn’t. I had to look it up. According to the Wikipedia article, 4 other people were in the same room. Three were uninjured. The fourth was injured but survived. Unlike those who died, we have not seen these names listed multiple times, nor have we seen their pictures. This is as it should be. Their privacy should be both respected and honored. But it does make it harder for us to remember them as people. Harder to remember that they were each witnesses to something that no person should ever have to see or experience: the sight of friends and loved ones being gunned down at close range, and the horror of wondering if they were going to be the next to be killed. That is an experience they will have to live with for the rest of their lives. An experience that typically produces feelings of intense relief that their lives were spared, and also feelings of guilt that they are still alive and others are not.

We need to remember those four survivors, as well as Rev. Pinckney’s wife and daughter who were present in another room of the church during the shooting. It is harder to remember the survivors, but we must. We must continue to hold them in our thoughts and prayers because they have had unspeakable violence perpetrated against them as well. We need to continue to remember the living as well as the dead, and work harder than we have ever worked to reduce the racial hatred and violence that exists in our country. We need to learn to recognize ourselves in each other, no matter the color of our skin, so that terrorist acts against those who are different do not continue to repeat themselves. We need to do all of this not only to honor the dead, but to honor and remember the living.

Loss

After

After

It’s hard, loss. It just is. I’m still a little weepy from encountering the about-to-be-fifth-grade student in the produce section of the market on Monday. When I allow myself to think about it, tears start to form. I could just push the feelings down and ignore them, but I have learned that if I do that, it just makes things harder later. Strong feelings that are suppressed don’t just go away. They lurk in the darkness, gathering strength, so that when they do surface, it takes far more resources to deal with them than it would have originally. I spent my childhood having to bury emotional reactions, so I count myself fortunate that I now can allow myself to feel appropriate grief and mourn a loss.

But that doesn’t mean that it is easy. And I’ve learned that it doesn’t matter whether the rest of the world judges something to be a major or minor loss. Only the person experiencing it can know how much a given loss affects them.

For me the sight of this 10 year old did not just trigger the feelings of the loss of my fifth grade classroom after my immune system collapsed. It triggered the feelings of loss over my life as I knew it.  The loss of my independence to be able to go where I wanted to go and do what I wanted to do. The loss of being able to plan an outing and knowing that I had a 99% chance of actually following through on the plans. The loss of feeling that I was making a positive difference in the world each day, and the loss of the sense of pride that I was able to do a meaningful job and contribute to the financial health of the household.

After my immune system collapsed, I wasn’t sure of who I was any more because I couldn’t teach, or work in any capacity. For several years I couldn’t go to medical appointments or the grocery store without help. I couldn’t even depend on my body to do what it is hard wired to do: stay alive. Even catching a common cold could, and sometimes did, lead to an intractable infection that would take months to resolve, and even longer to fully recover from.

When that happened, I knew that the only thing I could do was to put one foot in front of the other, each hour, each day, each week. If I survived, great. If I didn’t…. well, it would be regrettable, but not unexpected. I was too sick to do, or accomplish anything. I couldn’t read the newspaper or a book. I couldn’t make any plans for the future beyond the next few minutes. I no longer knew my place in the world, and had no idea how I would put my life back together, or if that would even be possible.

This was my life after my immune system collapsed. There was a Before, and then there is an After. My health has improved markedly in the years since then, and I have slowly been inching toward a more normal life. I have now taken a wonderful trip to France, and many days I find that I can write, or I might have the energy to walk around with my camera around my neck taking photographs of beautiful things. But I never know. The past several days my body has just sort of shut down and I’ve had to clear everything off my schedule except medical appointments. I’ve had to rest a lot, and can not even be sure if I will have the energy for using the tickets my husband and I have for a play tonight. We can exchange them if necessary, but still….

There was a Before, and there is an After. And seeing the 10 year old in the produce section reminded my heart of the Before. I am deeply grateful that I so passionately loved the last years of my career, and it is good that I am able to cry over the loss. But that doesn’t mean that it is easy.

A Stab of Grief

Grief and Beauty

Grief and Beauty

Yesterday I was in the produce section of the market, and noticed a child helping her mother. She was reaching up, trying to grab ahold of a plastic produce bag from the dispenser, but she just wasn’t quite tall enough. Even on tip toes, she missed by about  2″. I smiled at both her and her mom, and commented that she needed to grow just a little more. They smiled back, and I could tell by the girl’s reaction and her height that she had just finished fourth grade and would be entering fifth grade in the fall. I felt a stab of grief. Her face so perfectly expressed the common energy of  10/11 year olds, and I realized again how much I miss a classroom full of those faces, eagerly looking at me, waiting to laugh at my jokes, learn new things, and to let their minds blossom into abstract thinking that is a whole new way for them of looking at the world. They are just beginning to see the interconnection of different ideas, facts, and applications. And when their faces light up with excitement over understanding something new, it is one of the best highs in the world. Fifth graders are the best students on the planet to teach, and I still miss it. If my collapsed immune system hadn’t forced my early retirement, I would still be teaching for a few more years. I haven’t yet hit normal retirement age. It’s not that my current life isn’t joyous. It is. And there are new experiences that are open to me now. But when you have lost something you love, through no choice of your own, it hurts. Over time, the loss gets less intense, but it is always there. Sometimes it rises up inside, surprising you with its intensity, and you find that you have some more grieving to do.

In Memoriam: The Mother Emanuel 9

IMG_1775It has been 3 weeks since the mass shooting at Emanuel AME Church in Charleston, South Carolina. In our modern world with our instantaneous social media and 24/7 news cycle, three weeks is a long time. Our various electronic devices ping and swoop and chime, constantly clamoring for our attention, each one urgently trying to convince us that something earth shattering has just happened. As often as not, we find out that the momentous event is only a picture of what a friend just ate for lunch. Then we move on to the next thing. We have become a nation with a very short attention span.

Our human brain can only hold a finite amount of recent information before it has to clean house and make room for more. And I’m afraid that our brains have already tidied up the clutter a number of times since the massacre in Charleston. We have moved on to more recent events: the US women’s team winning the World Cup, the fact that we need to remember to fill up the car with petrol on the way home from work, and Greece’s impending economic collapse, to name just a few. That makes me afraid that we will forget.

I’m afraid that we will forget the horror of a gunman entering a house of prayer and, with malicious intent, murdering 9 innocent people.
I’m afraid that we will forget how unconscionably easy it was for him to get a gun and ammunition for the sole purpose of ending 9 black lives.
I’m afraid that we will forget to look seriously at the societal factors that caused this young man to hold such violent hatred in his heart that he thought these 9 lives were of no account.

And we mustn’t. We must not forget these events, nor the hard conversations we must have so that we can face, and then work to change, the discrimination and violence so many still experience in this country.

We must, in fact, remember. Remember and understand the deep truth that President Obama expressed in his eulogy for Pastor Clementa Pinckney when he said that “My liberty depends on you being free as well.”

We must remember, and continue to hold in our hearts, The Mother Emanuel 9:

Cynthia Marie Graham Hurd

Susie Jackson

Ethel Lee Lance

Depayne Middleton-Doctor

Clementa C Pinckney

Tywanza Sanders

Daniel Simmons

Sharonda Coleman-Singleton

Myra Thompson

Discrimination and Grace

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Two and a half weeks ago, I wrote about singing at the memorial service of an elderly friend. A week after that memorial, I sang with 30 other people for a friend’s wedding. The wedding was glorious: a full church with both families present, wonderfully chosen organ and choral music, and palpable love and joy that were filling the church and spilling out of the doors. Both services, spaced exactly a week apart, were celebrations of life. The first was a celebration of the memories of a long life, fully lived. This second service, which occurred two weeks ago, was the celebration of a loving couple, starting their life together.

But here’s the thing. Until a week ago, with the United States Supreme Court’s ruling making same sex marriage legal in all 50 states, there were still 13 states in which my friend would not be legally married. Because he is gay. Because he married a man. Because he now has a husband. Because of this, all of us had been looking forward to the wedding. It would give us a chance to witness, and participate in, a celebration of equality.

And then just two days before my friend’s wedding, the mass shooting happened in Charleston, South Carolina at the historic Emanuel African Methodist Episcopal (AME) Church. A shooting in which nine innocent people were killed. Some politicians tried to put a spin on it by saying that it was an attack on Christians. Their statements are insulting, and make me incredibly angry. The shooter targeted the members of Emanuel AME Church not because they were Christian, but because they were black. It was a hate crime.

The mass shooting in Charleston is particularly painful because for us in the United States, it evokes the memories of other hate crimes. The 16th Street Baptist Church bombing of 1963 in Birmingham, Alabama, in which 6 little girls were killed, and 22 others injured. The shooting at a Sikh temple in Wisconsin in which 6 people were killed, and 4 injured.  The murder of Larry King, a 15 year old 8th grade student who was shot in the back of the head during a computer class by a fellow student who was 14. He was killed in school because he was openly gay.

These are just the sensational events. The ones that make the news. The reality is that more subtle acts of violent discrimination occur every single day. We just don’t hear about them. What kind of society do we live in, in which such acts of bigotry and hatred continue to occur?

Part of the answer is that we live in a country in which discrimination is endemic. African American slaves existed in Jamestown, one of the earliest American colonies. Even before that, as the Spanish Conquistadors arrived in the New World, their psychological dominance and superior weapons enabled them to enslave the indigenous population. This is the part of our early history that we don’t like to talk about, especially on the 4th of July. It is true that our country was, and is, founded on noble principles. But if we are serious about “Liberty and Justice for all,” as we say in our Pledge of Allegiance, then we must grapple with the fact that freedom and justice have existed for some at the expense of others, for as far back as our history takes us.

Discrimination and its inherent inequality is our country’s demon. It’s the monster in the closet that no one talks about. And if it is talked about, the conversation often goes something like this:

“There’s a monster in my closet.”
“I know you’re scared of that monster, but it will be alright. It will go away if you just ignore it.”

The trouble is, the monster doesn’t go away. Not as long as it is left in the closet. Especially if the closet is locked and boarded up so that the monster has no way to get out. But letting the monster out of the closet will force us to face our fear. And so we keep the monster out of sight and try to forget that it is there.

I am a survivor of childhood violence, and I tried to keep my own monster stuffed down, out of sight, and locked up for years and years. I thought the best thing I could do was to just get on with my life. But finally the internal havoc wreaked by trying to keep that monster under lock and key was so great that I had to let it out and engage it. That process sometimes brought me to the extreme edges of pain and I often wondered how I would be able to keep going. I know the devastation violence can bring to a life, and the tremendous effort it takes to move toward imperfect healing and forgiveness. But you can’t do any of that until you let the monster out.

I also am a woman of faith, and my faith calls me to be a fierce fighter for dignity and justice. A society is made up of people, and people are messy. Each society has it’s own history, and histories are messy. We are complex social creatures. We want life to be simple. We fear change. We fear shifts of power. This attitude is not bad of itself: it contributes to our survival. But fear can cause us to do terrible things, hateful things. And we must not let it.

We are more than our fear. We are beings who can also embody love, hope, forgiveness and grace. President Obama gave the eulogy at the funeral of Clementa Pinckney, the Pastor of Emmanuel AME Church. In it, he talked about grace. Amazing grace that can come both from God and from each other. He cites the grace of the families who lost loved ones, and goes on to say that by making the moral choice to change, we express God’s grace. He talks about how we need to make changes in our laws so that we can curtail the carnage of gun violence. He challenges us to talk and to work openly to end the systemic prejudices of our society that result in ruined lives that are absent of hope. He reminds us that as we fight for dignity and justice for everyone, we embody God’s grace.

But that embodiment can be difficult. It requires commitment. Grace is not some amorphous sense of contentment that makes us feel good. The embodiment of grace requires action. We have to act in order to let the monster out of the closet. It won’t get out by itself. That action can be both painful and terrifying. But slowly we will discover that letting the monster out opens us up to grace. We will learn that the pain and fear can sometimes crack us open so that grace can pour in.

Below you can listen to President Obama calling us to let that grace into our lives so that we can bring freedom and liberty to all. And then remember the victims of the mass shooting at Mother Emanuel Church. I can think of no better tribute to our great country on the 4th of July than to commit ourselves to not let their deaths be in vain.

Photogrpah courtesy of the author. First appeared in Zebra’s Child, July 4, 2015.

In Requiem

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Les fleurs dans Le Jardin des Tuileries

On Saturday I joined a group of 24 singers to sing for the memorial service of an elderly friend. I didn’t expect to cry as much as I did – I hadn’t put any kleenex in the pocket of my vestments, and had to ask for some from a fellow singer. I hadn’t expected to cry that much because the service was indeed a celebration of a life that had been joyfully and fully lived.

My friend had led a life filled with service to others, and he found some of his greatest pleasure in listening thoughtfully and unhurriedly to people as they worked through both their tangles and their celebrations. He was so present when you talked to him, and his children attested to the fact that he was that way at home as well, both during their childhood and after they became adults. He deeply believed that God was revealed in each of us, and he thought it a privilege to sit in the presence of someone as they talked to him. He was fond of quoting St. Irenaeus using inclusive language; “The glory of God is a human being fully alive.”

Fully alive. It is what the French mean by the phrase Joie de vivre, although a lot of the meaning is lost in the translation into English. It doesn’t just mean the joy of life. A closer translation would be “the joy of being fully alive.” Being embodied, grounded, delighting in each moment as it comes, whenever that is possible. And when it’s not, whether due to health conditions, pain, trauma or grief, to do our best to still find some beauty or kindness in the world, despite all. Or even more so, perhaps, in the midst of all.

My friend didn’t have a perfect life. None of us do. But he had a way of living fully and delighting in other people’s joy. I met him in his elder years. I wish I had been able to know him when he was younger as well.

I think I cried as much as I did during the service because even though he was at peace and was ready to “cross over the river,” as he phrased it, a beautiful soul has departed this life, and I shall miss him.

Necessary Emotions

Getting to the point where we accept our medical condition does not mean that we don’t go through strong emotions getting there. Nor does it mean that we won’t continue to have strong emotions. Accepting the limitations imposed by our bodies dose not mean that all of a sudden we say, “Yea! I have a disease that could kill me at any time and puts me in daily pain.”

And it shouldn’t. To reach the point where we accept our current life means that we have to grieve the loss of our old one. And grieving is work. Hard work. Elizabeth Kübler-Ross, who wrote the seminal book, On Death and Dying, among others (and which was required reading when I was in nursing school all these many years ago) talks about the stages of grief. We now know that those stages do not always occur in the order that Kübler-Ross lists them, but all the stages are necessary. We may find that our natural process is to skip over some and come back to them later, but going through the stages is not an option. If we are to truly heal from grief, we must experience it.

There is, unfortunately, no shortcut. I wish there was. Oh, how I wish there was. And grief, as any strong emotion, has a sneaky way of surprising you. You think you’ve worked through it, and then wham! You read a passage in a book, or a memory surfaces, or you see someone doing something that you love to do, and no longer can, and all of a sudden you feel like you can’t breathe, the sense of loss is so strong.

But it is all necessary. Never feel guilty about grief. Or the feeling of anger, which is actually a stage of grief. Those feelings are cathartic, and help us heal. They help us reach a state of equilibrium where we can begin to discover how we can best live our new lives. Lives that may be circumscribed with unwelcome limitations, but lives which nonetheless still give us opportunities to live in the present, with whatever degree of Grit and Grace we can manage. Some days it is more than others. And that’s ok.

 

Tears on My Pillow

I woke up yesterday morning with my pillow wet.  I had been crying in my sleep and as I woke up, the dream was still so real that I was overwhelmed with sadness.

I wasn’t terribly surprised. I got through the day of subbing on Wednesday, but by the time I got home, I was exhausted. I probably won’t be as exhausted next time I sub because I will be in the familiar environment of my own school.  But Wednesday night I was discouraged. I had lain down and rested after I had gotten home so that I would be able to go to rehearsal.  Normally I might not have gone, but we are three weeks away from our Spring Concert and some of the music is quite difficult.  Perhaps more importantly, I almost always feel better after half an hour of singing.

But I was definitely discouraged.  And singing accesses my emotions at a deep level.  So at some point during the rehearsal I wanted to cry.  Kind of interferes with singing, so I didn’t.  But I did allow myself to be sad.  And scared.  How limited will my life continue to be?  And of course the answer is that I don’t know.  Which is even scarier.

So I woke up the next morning with the dream of my grandmother’s house in New York still vivid, and I knew what had been so upsetting in the dream.  I had been walking from room to room in the house one last time. That happens sometimes in my dreams, this process of saying goodbye to the house and to my grandparents.  In fact until about ten years ago, about twice a year I would dream so intensely that I was still living in the house that I would wake up disoriented and wonder where I was. But in this dream, people were talking about selling the house. And I wept.  I wanted to scream, “Wait, wait!  Please don’t sell it.  I want to come back!”

And then I knew that the tears were about loss.  I usually don’t allow myself to feel grief. Which works about as well as the large cap on the ruptured oil well in the Gulf of Mexico worked.  But every once in awhile something allows the grief to rise to the surface, and in this case it was a dream.  I lay in bed and cried for several long minutes grieving the life that I’ve lost.