Zebra's Child

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

Category: Photography

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.

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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In Memoriam

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

New Life

© Zebra's Child

                                              © Zebra’s Child

My husband and I just returned from spending a week with one of our daughters, her husband, our almost-3-year-old grandson and our brand new baby granddaughter. We rented a vacation flat that was close by, as there certainly wasn’t room in their small house for two more adults. That also enabled both us and them to have some privacy and to somewhat keep our regular schedules. We are no longer used to waking up in the middle of the night with a crying baby, nor getting up at the crack of dawn with a happily active pre-schooler. So renting a vacation flat worked out brilliantly for all of us.

We were there to meet the new little one, participate in her Naming ceremony, read stories and play with the almost-3-year-old, and generally help out. As my English Aunt has said to me, “Isn’t being a Grammy grand!” It is indeed.

Industrial Water #2

©Zebra's Child

                                           ©Zebra’s Child

Photo taken in Pasadena, California, 08/06/2015.

Eastern Building

Entrance          ©Zebra's Child

Entrance, Eastern Building               ©Zebra’s Child

Historic Art Deco, Eastern Columbia Building Entrance,  849 S. Broadway, Los Angeles, California.