Living With Common Variable Immune Deficiency and It's Autoimmune Friends
This was taken September 8, when the AQI (Air Quality Index) was Moderate at 95. The air is much worse now. Yesterday (September 11), the AQI was Very Unhealthy at 247. The City was invisible.
Image: Hannah A Keene
George FloydFor the turning of the tide.
Life is filled with longings, hopes, dreams, and waiting. Always waiting it seems. When my husband and I were young and newly married, it seemed we waited a lot. Waited for the next pay check, waited to start a family, waited to be more financially more secure. Waited for things to be easier. We didn’t stop living, but we were so conditioned and focused toward working toward a future goal, a better life, that I think often we didn’t savor what we did have in the moment. We were happy and deeply in love but were always looking forward, forward, to when times might get easier.
But I wonder now, a year after my husband of 44 years has died, if we also lost a little in the process. This holiday season, I have been missing him terribly and thinking back to those early years together when so many things seemed like a struggle that we sometimes forgot to live in the present. I think back now and wish that I could have appreciated a little more then, what was then.
On this Christmas afternoon just past, as it stretched into the fourth night of Hanukah for my young grandchildren, my heart was aching for those early years of marriage and children and hope. Yet the sorrow was vying with the fact that I knew that I was in the process of making new memories with them. I hope they will remember the Hanukah/Christmas that I began to teach the 7 year old how to use a sewing machine and helped the 4½ year old make a unicorn purse and string a heart necklace.
I hope that they will remember. Because now it seems that time is moving in reverse. I used to dwell in the future. But now if I dwell too much in the past, I will still not be able to fully live in the present. Surely there is a balance to be had, of looking forward and hoping, while holding onto the memories and love of the past. And not losing either.
The tide comes in and nourishes the seaweed on the rock, then temporarily withdraws, allowing the seaweed access to light and air. It seems so simple when looked at like that. But it is anything but simple. It is, in fact, a complex ebbing and flowing that has taken eons for nature to perfect. How do I learn to manage that, keeping the delicate balance between holding and letting go?
Don’t blow too hard. Holidays can be difficult when loved ones are no longer with us. The grief seems larger than the joy. I hope it gets easier as the years pass.
Here in the States, November 11 is Veterans Day. Originally it was established as Armistice Day, the day Germany formally surrendered at the end of WW I: November 11, 1918. In 1954, the name was changed to Veterans Day, to honor U.S. veterans and victims of all wars.
In 2015 my husband and I took a long awaited trip to France. One of the places we visited was the American Cemetery in Normandy. The cemetery covers 172.5 acres and contains the remains of 9,388 American soldiers. There are graves of Army Air Corps crews shot down over France as early as 1942, and graves of 4 American women. But most of the graves are of those soldiers who died during the Invasion of Normandy.
It is a sobering place, as you look out over row upon row upon row of crosses and stars of David. My husband said, “There is such sadness here.” My thought was of all those men, overwhelmingly young, who would never have a chance to have a career, or fall in love, or get married, or live to see their children grow up. They would never see their lives open up before them.
Here is a closeup of an infinitely small section.
Posted for the Ragtag Daily Prompt: Bravery.
I often cry these days. Not just because my husband died a year ago, although that’s the occasion for tears on some days. But I more often cry out of despair and fear, and a feeling that my life’s work has been in vain. I spent my career as a teacher of 4th and 5th graders. Two thirds of my teaching years were in underserved neighborhoods where I tried with everything I had to give the necessary skills to my students so that they would be able to break out of a cycle of poverty. And for all my students over the years, whether middle class or below the poverty line, I tried to instill in them a love of learning, and a curiosity about the world. Each year I worked to create a cooperative classroom where students could learn from their mistakes, take risks, and help each other succeed.
These days I sometimes wonder if my 20+ years of teaching made any difference at all. I do know that I made a difference in my individual student’s lives, but I find myself wondering if that made any difference in the wider world. Across the globe I’m seeing genocide, bigotry, hate infused rhetoric, riots and protests caused by the desperation of ordinary people who can’t make ends meet. I see the very rich becoming the super wealthy while ordinary people can end up on the streets because of one medical bill too many, or an expensive car repair that is necessary in order to get them to their underpaid job. I see the 1% of the world’s wealthiest people buy influence and power that subverts democracies. I see desperate immigrants arrive on the shores of more stable countries because of climate change and violence in their land of birth. And I see the more stable countries genuinely unable to take in an infinite number of refugees. I also see some leaders, especially in my home country, the United States, flat out deny science and refuse to work toward limiting the carnage that will be unleashed by a warming planet if we do nothing.
I am the first to admit that I am more fortunate than most. My husband and I had access to good educations, and although we each had times of unemployment while rearing our children, we were never both without a job at the same time. We had access to good and affordable medical care when our younger child faced a host of serious medical problems shortly after birth. And for most of our working years we each worked in jobs that had a decent salary and excellent benefits. Money was often tight. Sometimes very tight, and we did without a lot of things. But we knew that we could keep a roof over our head, put food on the table, and send our children to school. That counts as well off in most of the world.
I took that knowledge, that we were privileged compared to most of the world, and dedicated my life to working for justice, trying to level the playing field through education, and believing that while no system of government is perfect, democratic and parliamentary systems of governments are the best options we’ve got. And I now see them crumbling into authoritarian and autocratic systems that seem to disproportionally benefit the most well off of citizens. It’s not much of a surprise, then, that societies world wide are devolving into a us vs them mentality with each side of the spectrum not trusting the other.
I have some theories as to how this has come about, but unfortunately I don’t have any nuts and bolts ideas as to how to fix it. Because it’s not just the United States, or France, or Venezuela, or Hong Kong that’s falling apart because of inequitable resources and whole segments of the population that have been left out of the power loop. It seems to be global. I keep trying to work on equity, kindness, seeing each person for who they are and trying to have honest conversations about where we disagree. I work every day at showing each person that no matter where they are on the income scale, or what the color of their skin is, or whether they have made serious mistakes in their lives, or whether they are immigrants or native born, they matter. I can do this on an individual basis, person by person. But I feel overwhelmed. And I feel like it’s not enough.
A flower cries, the stones cry out, and I weep. Who will remember the forgotten of the world?
Posted for Ragtag Daily Prompt – A Flower Cried.
Far and away my true love lies
Just beyond the hill
And many a day I long for arms
That would hold me tightly still.
But far and away the grey gull flies
Quite far beyond the hill
And brings sweet memories back to me
Of a love that lingers still.
~Hannah Keene 2019.
Posted for K’lee and Dale’s Cosmic Photo Challenge: Misty Memories (Photos and Poems).
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?
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.
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.
Zebra's Child 