Zebra's Child

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

Category: Acceptance

You’d Think It Was Fall

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Fallen Flowers                                                      Image: Zebras Child 2019

But these are only fallen flowers and buds in the Spring. Some flowers fall before they’re completely withered, and some buds fall before they’ve even had a chance to open.

Fuzzy Focus

The photo below is extremely fuzzy. I only had my phone with me, when what I really needed was my good camera with the telephoto lens attached. The photo that I was able to take showed this egret as a mere speck in the picture. By the time I had enlarged it enough to actually be able to see the bird and its reflection in the water, everything was terribly out of focus. But I love the photo, and decided to use it anyway because two things occurred to me.

1. I am a perfectionist. I have to constantly remind myself that rarely do we achieve perfection in what we do. “Good enough” is also beautiful.

2. During intense grief, everything inside and outside your head feels out of focus except the grief. Your brain can barely process what you see and hear from the outside world. Even the thoughts inside your head are totally jumbled and you feel incapable of rational thought. (Which you more or less are,  actually.) Thankfully, after my husband’s death, both the hospice workers and friends who had been through this themselves told me that all this was normal. Even though that period of constant intense grieving is mostly gone, there are still moments, or days, or sometimes several days when missing him overwhelms me, and everything else in the world feels off kilter and fuzzy.

I decided that this picture, imperfectly capturing beauty, could be a touchstone for me. A reminder to not judge myself too harshly. And a reminder especially to have some compassion for that part of me that still grieves.

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Schubert Bliss

Almost 7 months to the day since my husband died, I am finding  that a sense of peace often settles over me. I’m not saying that there is not still grief, or that I don’t still miss him. There is, and I still do. But I am finding that as time goes by, I am remembering more and more often our many decades together when he was not sick, and remembering less the awfulness of the illnesses that preceded his dying.

Last night I went with two friends to a small concert venue to hear an evening of music written by Schubert. As an Austrian composer of the late 18th and early 19th century, he was unusual in that he not only composed music for small and large orchestra, but also wrote transcendently beautiful art songs for voice. Saturday was an evening of both.

I am fortunate. Much of music speaks directly to my soul. It bypasses my analytical brain and goes straight to my heart and fills me with a sense of peace and beauty. Sometimes it feels as if the music inhabits me and I sense little boundary between me and it.

Such was last night, and I realized, not for the first time, that the intense grief of my husband’s death has continued to lessen, giving me space to exist in the world. Such is the grace of time, I think, and love. As I sat there fully present in the music, I realized that this is exactly what he would want for me. He would not want me to stop living after his death, but rather fully embrace life for the both of us.

Health As We Age

To say that a lot has happened in my life in the last two years would be an understatement. But today I would like to focus on something good: the fact that our moving back north and into a retirement community has improved my health significantly.

My husband and I had lived in a communal living situation before we were married. While no one had the full responsibility of the house, or meals, repairs, etc, we all needed to pitch in and help. But living in a retirement community, especially in the heart of the City of Oakland is very different. Essentially our monthly fee takes care of almost all of those chores. It has given me the wonderful freedom of time that I did not have while living  in our house. I no longer have to spend hours at the grocery store, as dinner, the most complex meal, is provided in our monthly fee. The few things I do need in drug stores, grocery stores, or hardware stores are only 2-5 miles and about 5-15 minutes away. And while I prefer to support local merchants, if I am ill and cannot get out of the apartment, I can always order things on line – something I find I am doing with more regularity now. Oh, and our medical care? We specifically chose a retirement community that is very close to our Kaiser: only 1 mile away!! Also, I am no longer responsible for repairs. While it still gives me great satisfaction to fix things so that they work again, the whole process of finding the replacement part you need, and then of course almost always discovering that the repair takes way more time than you thought it would, is exhausting. I’m willing to give up that “It actually works!” thrill in exchange for being able to pick up the phone and have the repairs done by the staff in the building. Each time I am able to do that, I realize that it has saved me several hours of hard work. And more importantly, saved me the extreme exhaustion that comes from that.

However, the biggest improvement in my health since the move back to the coast of Northern California has been getting out of the terrible smog and traffic congestion of Los Angeles. While the Bay Area does have some smog, it is quite mild compared to LA. And traffic congestion, while it certainly exists, is also not as bad. And the bottom line? I don’t need to get on the freeway during rush hour.  (Insert very very happy face here.)

Friends are even more important as we get older, in part because we no longer have the daily interactions with people at work. In fact, in older age, one of the predictors of poor health in general, and poor outcomes of medical events in particular, is isolation. My husband and I were lucky enough to have moved into a 23 story building with 250 residents. We are a community with a common dining room and many activities, so I have the pleasure of meeting many friends. Far more friends, in fact, than I think I have ever had at one time. And with so many residents in the building, it’s possible to find a few close friends right here. And perhaps the best part? One of our daughters, her husband, and our grandchildren live only 6 miles away, so I am able to be very much involved in their lives. The presence of people I know and love has been wonderful.

As my husband’s and my health steadily declined over the years that we were living in the house in Pasadena, we invited fewer and fewer people in. It happened slowly, and so we didn’t recognize how isolated we had become until we moved into this retirement community. After only a couple of months here we realized that not only did we have family close by, but that we were once again surrounded by friends and had interesting things to do, all without leaving the building if we didn’t feel well enough to go out.

And on a final note, I just have to say that the weather here in the East Bay always feels as if it was created in heaven. The moderate climate has been a huge help. It rarely gets as low as the 30’s at night, and it is very unusual for it to be as high as the upper 90’s in the summer.  The area in which we first lived in Southern California for 25 years could get up to 114 degrees in the summer. I’m not making that up. The extreme heat would often start in April and last until the end of October. (With the June Gloom giving a short respite.)  It was routine during those months for the temperature to be 102 – 106 degrees. But 110 – 114 was a special hell. When we moved to Pasadena, the summers were at least better, but still ranged from 96 – 102 degrees. I have never tolerated heat well, and after my immune system collapsed, the hot summers left me constantly feeling ill and unable to do much of anything.  In the Bay Area’s temperate climate, I am able to be much more active, which in itself improves both my health and energy. Adding to that I can tell you that we have practically no flying bugs. I’n not saying that flies won’t buzz around garbage, but we have so few flies and mosquitoes that in general we don’t even have screens on our windows. The wall in the living room that opens out to the balcony is made entirely of glass. (Tempered glass in a temperate climate.) When I open the sliding glass doors, and there is not even a protective screen, I feel that there is no separation between me and the outside. Living on the 10th floor and standing just inside those open doors, looking out over roof tops and towards the hills makes me feel almost suspended in space, and gives me the sense that I am one of the luckiest people alive.

I am deeply saddened that my husband didn’t have longer to enjoy our life here, but I am  profoundly grateful that we moved when we did. He thoroughly enjoyed the two and a half years he did have here, and I am healthier, have half of my family close by, and am surrounded by many people who truly care for me. I sometimes think about what my life would be like if my husband had died while we were still in our house, and I realize that it would have been so much harder. If I had been left on my own in the house, I wouldn’t have eaten adequately, I would have wandered around in an empty house with only the dog, I wouldn’t have had the health or the energy to meet up with friends, and I would have become extremely depressed even beyond mourning the death of my husband. I would have known that I couldn’t have continued to live in the house alone, but would have had such feelings of conflict about the process of leaving, that it would have felt overwhelming to sort it out. Neither my husband nor I were blessed with good health, and at first I was angry that we needed to give up our beautiful Craftsman home and move into a retirement community when we were so young. But I am so very grateful that we did.

 

 

 

In Memoriam

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Mon mari à L’Arc de Triomphe, Paris, Printemps 2015

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

Married Is Married

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No matter which way you look at it. Or perhaps I should say, No matter what a particular couple looks like: Lesbian, Bisexual, Gay, Transgender, Queer, or Straight.

Just before midnight in my time zone, I’m giving one last weekend “Hurrah!” for the Supreme Court decision last Friday. It’s been a long time coming!

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