Zebra's Child

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

Tag: Loss

Beginnings

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Image: Zebras Child 2019

For the first few months after my husband’s death, I could think of nothing other than the loss of him. It invaded both my waking and my sleeping and was intensified by the bone deep exhaustion that permeated every cell of my body. But gradually, over the months, I started to notice that there began to be room for other things. I began to be able to eat with friends and stay still long enough to observe the fog slowly retreating up the hills in the mornings. It’s not that I hadn’t seen the color of the world in the early months of grieving, it’s that the color and beauty were merely observed rather than taken in. Somewhere around the seventh month since the fall that took the essence of him away, which was also the fifth month after his death, I began to notice that every once in awhile I would feel a flash of joy. I didn’t quite know what to do with that. Should I feel guilty that I was beginning to feel comfortable in the world again or be grateful for it?

I’m Looking For Some Hope Today

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View of a rainbow from my living room                       Image: Zebras Child 2019

I’m still devastated by the shooting on Saturday at the Chabad Poway Synagogue in Southern California. This quote, copied from the New York Times, says it better than I can.

And yes, I have put this post under the category of Civil Rights because the first Amendment of the Constitution of the United States guarantees the free exercise of religion.

“This shooting is a reminder of the enduring virulence of anti-Semitism. It must serve as a call to action for us as a society to deal once and for all with this hate. People of all faiths should not have to live in fear of going to their house of worship. From Charleston to Pittsburgh to Oak Creek and from Christchurch to Sri Lanka, and now Poway, we need to say ‘enough is enough.'” —Jonathan A. Greenblatt, CEO of the Anti-Defamation League, in a statement.

I Don’t Understand Hate

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Shadows                                                                     Image: Zebras Child 2019

Once again an attack of hatred has occurred in a house of worship. This time at the Poway Synagogue near San Diego, California. This shooting occurred exactly six months after a gunman killed 11 people at the Tree of Life Synagogue in Pittsburg, Pennsylvania.

I don’t understand hatred. Especially hatred based on faith. Over the last few weeks the world has seen hate crimes perpetrated against people of all three of the Abrahamic faiths: Muslims, Christians and Jews. But it seems that antisemitism especially is once again rearing its monstrous head. I had not thought to see this level of hatred against Jews in my lifetime.

I was born not long after my father returned from helping to liberate France in WWII. I was raised as a child of a military officer, and growing up, almost every man I knew had served in the war. It wasn’t talked about much; most of those who served in the combat zones of WW II wanted to forget the trauma of their experiences.  But as a result, I paid more attention than most children my age when the war was occasionally mentioned or when I studied WW II in school.

I first learned about the Holocaust in 8th grade American History. I couldn’t emotionally understand why anybody would try and annihilate 6 million people based solely on their religion. But I did understand that my father, and anyone else who had fought in Europe, had helped to put a stop to the Third Reich’s unfathomable mass killing machine.

This hatred and rage still does not make sense to me, many decades later. But having grown up in the shadow of WW II and knowing about the atrocities committed in both theaters of the war, I honestly thought that we, at least the countries who had participated in the war, had learned a lesson. I truly thought that “Never Again” had been inscribed on our souls.

I was, and am, apparently naive. Where has this burning hatred emerged form? I have some complicated philosophical theories that I won’t go into here. But I’m still heartsick and confused. Why do we hate at all? Why do we continue to terrorize and kill because of differences of faith? How has it once again come to this, that people need to fear when they walk into their houses of worship?

The Return of Grief

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Unexpectedly, this week has been an especially hard one in terms of the death of my husband. It has hit me hard, because, well, as I mentioned, it was unexpected. I don’t think that it is necessarily this hard because it is Holy Week, although I’m sure that doesn’t help. Rather it seems to have been a series of seemingly small things that have hit me like small blows, one after another, each one adding to the impact.

It started on Monday night with a concert. We have concerts in our building every Monday evening, and since my husband’s death, I have been choosing to sit off to the side and in the back, rather than our normal place close to the front, so that I could leave discretely if I felt too tired or too overwhelmed with memories. But this past Monday night, there was an empty seat right next to a good friend and I chose to sit there. It was in the third row, a place where my husband and I often managed to sit by arriving as soon as the doors into the performance space were opened. Our favorite cellist was playing this past Monday, and in the past, I have always wanted to sit as close as I can to her so I could watch her fingering and bowing. So I didn’t give it a second thought as I sat down four nights ago, simply glad that I had found a seat so close when most of the seats were already occupied. But then the cellist and the double bass player bowed the first note, and within five measures I found myself weeping, partly because the music was so beautiful, but mostly because it was impossible not to remember all of the string concerts here that my husband and I had enjoyed together.

After that, the week just seemed to pile up one assault of memory after another. Tuesday I was taking the dog out for her last walk before bed because our friends who normally do the last walk of the day are away. As I turned around to walk back home, I saw the lights on our skilled nursing floor and remembered looking up every night a year ago to find the room that my husband was in. In April of last year, he was still alive and awaiting the surgery to remove his gallbladder. It was before the fall that proved fatal, and at this time last year, we had every reason to believe that after the surgery, he would recover well and return to our apartment on the 10th floor.

Everything about this time of year reminds me of the hope that I had for his full recovery: the fact that it is still light after dinner, the temperature that’s running in the high 70s, and the way the light hits newly blooming flowers. I have been crying hard every day this week, and I haven’t done that in months. Certainly I have moments and days now when his death hits me hard, but I thought I was done with this constant grief that presses down on me and makes it difficult to find joy in anything. Each night I go to bed hoping that I will wake up in the morning without this stone weighing down my heart, but for now, at least, it seems to have settled in.

My Heart Is With the People of France

 

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Un immeuble à Paris                                                      Image: Zebras Child 2015

 

Almost four years ago my husband and I got on a plane and flew to France. This was a trip of a lifetime for us, and one that we both knew might be the only long distance trip we both could take, given our health conditions. After hearing for over 4 decades about his two years living outside of Paris as a boy, he finally got to show me his beloved city and I, too, fell in love.

We spent the first week in Paris, and then joined a tour of Normandy for the second week. I wished we could stay in France an entire month, rather than a scant two weeks. I arrived feeling like I had the French of a two year old, and came home to California answering every simple question in French, because I had trouble moving the switch in my brain back to English.

I wish I were in Paris now. Just to stand in solidarity with the French as they mourn the damage to Paris’ heart. La cathédrale de Notre Dame is the symbol of constancy, of reliability, of soul, to the French. It is something that holds fast through plague, war and famine. Construction started in 1163. 1163! We Americans cannot conceive of a building that old unless we have traveled outside the United States. It took 200 years to build. Stone upon stone, upward toward the heavens, the walls so heavy they had to be supported from the outside in order to stand up. Everything else in life may come and go in France: kings, governments, invading armies. But Notre Dame stands constant, the heart of the city. That heart has been damaged, and France mourns.

Mon coeur est avec toi, mes amis.

In Memoriam

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                                                                        Image: Zebras Child 2019

Yesterday was Palm Sunday, the beginning of Holy Week for churches that follow a liturgical calendar. It is the most holy week of the Christian year and leads up to Easter Sunday. I have posted about Holy Week before, but each year the internal experience is a little different because our experiences of the past year have necessarily been different.

This is the first Holy Week since my husband’s death so this Holy Week is fundamentally different to start with. But adding to the already high emotion of the week, we lost two members of our retirement community over the weekend. In a retirement community that provides care for the rest of your life, it is natural for deaths to occur. But there are 250 people in our community and the grief of a death is not felt equally by all. The deaths this week, however, both hit hard. One person lived with his wife just two apartments down in our short hallway, and the other death was of a dear friend of both my husband and I. Both were 15 years older than my husband, so they had had a full life. But that doesn’t really soften the emotional blow of their passing. I feel the loss, and I grieve. But I also feel an additional lack, for normally I would be remembering these lives with my husband beside me and we would be able to tell the stories of our friends and grieve together.

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?

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