Zebra's Child

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

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.

Wordless Wednesday

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L’Abbaye du Mont Saint Michel, Normandy, France   Image: Zebras Child 2015

Succulents and Reflections

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Image: Zebras Child

While I was waiting for my hair stylist one day, I noticed that not only was the green of the succulents against the orange cover of the book stunning, but as an added bonus, there was both an image of the window showing what was inside, overlaid by a reflection of what was outside. I could philosophize about how that is a perfect image for our lives, but right now I’d like to just stick with the beauty of the photograph.

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.

Appearences Can Be Deceiving

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Image: ZebrasChild

Any guesses as to what this tree is? Or the fruit? No fair if you are a person who knows the name of every flower, bush and tree.

I was taking a picture of this while I was walking the dogs (which is when I take most of my photographs), and a woman walking by asked me if I knew the name of the tree. When I responded that I had no idea, she told me the name and said, “Since you were photographing the tree, I thought you might like to know the name.” She was right, of course, I did want to know the name, especially since I was going to put the photograph in a post.

Ready for the big reveal? It’s an Irish Strawberry tree! (Arbutus unedo, if you’re interested.) And apparently you can actually eat the fruit; you can even find recipes for it online. Who knew that a kind of strawberry grew on trees? And especially looking at this unripe fruit, I never would have guessed what it was in a million years.

Many disabilities or rare medical conditions are like that – you can’t necessarily tell from just looking at a person whether or not they are healthy. A person with a serious heart condition, for instance, might not appear to need additional help opening a heavy door. And in my case, having a Primary Immune Deficiency doesn’t always show, if I’m relatively healthy at the moment. People passing me on the street have no idea that I need IV infusions every three weeks to stay alive. When people do find out that I have CVID, I usually get the reaction, “But you look so healthy!” For a long time, I didn’t know what to say to that other than “Ummmm, well….. actually I’m not.” Which made me feel a little silly, because it didn’t feel like I was adding anything either to the conversation or to their understanding. And giving a scientific explanation of gamma globulin levels, B cells, T cells, number of known genetic mutations, etc, which I love to do, usually has the effect of making people’s eyes glaze over. I usually end up saying, “Well, when I’m not doing well, I don’t come out of the apartment, so you usually only see me when I am doing well.” Which people here in the building usually do understand because there are many people in their 80’s and 90’s living here. And their medical condition is, well, being old.

But life can be extra tricky to navigate when you have been diagnosed with one of the “invisible diseases.” It’s hard to explain why you can’t always come to social functions, or why you need naps during the day and many hours of sleep at night. And it can be awkward to find that you sometimes have to cancel commitments at the last minute.

People often don’t know what to say when you explain that you have a managed, but incurable and life threatening disease. For those of you wondering, the most helpful response is the same as when a friend is going through any other difficult time. A simple, “I’m so sorry that you are living with this. Is there anything I can do to help?” goes a long way toward making us feel seen. Above all, we need to feel like people rather than A Person With A Disease. We have interests, goals, passions for things just like a healthy person. And we are so grateful when you see us for who we are: people. People with special needs, yes. But people. Like you.

Fairy House, Bear or Pig?

What do you see? Maybe all three?

Please weigh in with your comments below.

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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.

Pictures in Mud

One of my callings, or gifts, or weirdness, I don’t know which, is seeing beauty in the mundane. Or sometimes even seeing beauty in what other people would consider ugly. I was walking home from the grocery store today, and noticed that a tree was reflected in a mud puddle. I thought it was beautiful.

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