Zebra's Child

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

Category: Changes

Glorious Autumn

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Hello Everyone,

It’s been six months since I’ve posted, and I’ve been reluctant to dive back in because I haven’t known how regularly I’d be able to post. The process of getting our house ready to sell with repairs and what-not, drastically downsizing, deciding on the small number of things to keep, then donating/selling/giving away 90% of our possessions, actually putting our house on the market, then packing, and moving 500 miles into a small apartment in a retirement community dug me into an exhaustion hole so deep that it took me two months of sleeping almost non-stop before I felt half way human again.

But here we are, my husband and I, relocated, happy, and mostly sorted. Although there are still a sizable number of boxes on the balcony yet to be unpacked, and some disorder within the apartment that we are trying to contend with. I do still have some intense periods of grief over the people and places I left behind, but as I make new friends and put down some fledgling roots here, the intensity of the grief lessens. And our lives here are so much easier. We no longer have the responsibility of the upkeep of a house, and are no longer completely responsible for all grocery shopping and meal preparation. We are 5 minutes away from our medical care, rather than the hour of driving required each way in Los Angeles traffic, and we are now living in a geographically compact city in which most things that we need are within walking distance.

Add to that the fact that the air is significantly cleaner, and the weather noticeably cooler, and I find that I am incredibly grateful that I am no longer living in the smoggy intense heat in which I had to walk the dog before 8am and after 8pm in order not to make the two of us ill.

And here in Northern California, the fall rains have already arrived. We had a glorious weekend of two storms sweeping in with a much needed steady rain that was able to soak into the earth. I covered the boxes on the balcony with tarps, and then opened the sliding glass doors in the living room and bedroom (our only two rooms) so I could more fully take in the wonder of water falling into our drought parched earth.

How have all of you been these past six months?

xoxo,
Hannah

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.

 

 

A Profusion of Beauty

A Profusion of Blossoms After the Rain

                    A Profusion of Blossoms After the Rain                                                                                         ©Zebra’s Child

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.

A Re-Imagined Garden

Drought Tolerant Plants

Drought Tolerant Plants in Southern California

Break Out the Champaign!!

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There still is enormous work to do to end discrimination and violence (more on that Monday). But for me the weekend started Friday morning, when the Supreme Court of the United States (SCOTUS) declared all marriages, both gay and straight, equal in the eyes of the law. So let’s take this weekend to CELEBRATE!!!!

A Civil Rights Victory Today!

My friend's wedding

My friend’s wedding

This morning, our United States Supreme Court ruled 5-4 in favor of granting both the civil liberty and the legal protection for all couples to marry in all 50 states, regardless of whether the couple is gay or straight. Married gay couples will finally enjoy the same legal rights and benefits as married straight couples. They will be able to have health benefits through one partner, death benefits, hospital visitation rights, inheritance rights, the ability to file a joint income tax return, be recognized on official documents such as birth and death certificates, and will finally have the ability to move to any state in the union and be able to have all those rights recognized.

Justice Anthony Kennedy wrote for the majority:

“No union is more profound than marriage, for it embodies the highest ideals of love, fidelity, devotion, sacrifice and family. In forming a marital union, two people become something greater than they once were.”

“[Same sex couples’] hope is not to be condemned to live in loneliness, excluded from one of civilization’s oldest institutions. They ask for equal dignity in the eyes of the law. The Constitution grants them that right.”

This has been a long road to equality, but today we celebrate a  great victory. Marriage is marriage. Period. And it is protected by law. For EVERYONE.

And to everyone of you out there who couldn’t get married before, but can now, my heartfelt love.
xoxo
Hannah

“A Pathway to Joy”

This quote comes from an wonderful post by fellow blogger Su Leslie at Zimmerbitch, which is entitled “Pathways to Light.” She ends the post by posting a YouTube link (above), which is an excellent performance of John Rutter’s Requiem Aeternam. Leading in to this video, she writes,

The religious music of John Rutter embodies for me much that is truly good in humanity; a pathway to joy.”  ~Su Leslie

That sentence echoes deep within me, and is a perfect description of how I feel about John Rutter’s music. I have been privileged to perform many of John Rutter’s compositions, but the highlight for me came 6 or 7 years ago when one rehearsal we all walked in and found the score of his Gloria in our boxes. It’s a 20 minute piece, and at the time was by far the hardest piece we had ever performed. I seem to recall that we spent about 2 months learning it, and our musicianship grew tremendously in the process. The second movement, opening with only the men’s voices, is so beautiful that it almost broke my heart, even in that haltingly imperfect first reading. It is the kind of music that haunts me with it’s beauty, and I literally began to hear it in my dreams once we had been rehearsing it for awhile. It was then the kind of piece that is given to you occasionally in your performance life, that stretches your skill almost to the breaking point. The kind of piece that reaches inside and changes you. So that from that point forward, there becomes the way you sang before that piece, and the way you sang after. John Rutter’s Gloria became such a piece for me.

Gloria, by John Rutter:
(You have to click on the tiles on the screen after the first movement finishes (I Allegro) in order to listen to parts II and II. Be careful, as the tiles are not arranged in order. Listen especially to the second movement: II Andante. That is the movement that is the most ethereally beautiful.)