Stark Beauty

Stark Beauty
Stark Beauty

We all have images inside our head of things that we find the most beautiful: our favorite flower, a painting that makes us catch our breath and stand mesmerized, a memory of a gorgeous sunset. When I think of an ideal garden, for instance, I think of the lush gardens I saw in front of country cottages in small villages in England many years ago. Of course the gardens got that way because it rains in England. A lot. Almost all the time, in fact. Or at least sometimes it seems that way. I’d love to reproduce just such a garden in my own backyard. But I have something of a problem: Southern California is in the midst of a severe drought. So if I am going to rip up the small patch of grass in my backyard for anything, it has to be for the purpose of replacing it with drought tolerant plants. Sigh. Drought tolerant plants do not fit my definition of “beautiful backyards.” At all. But as I have been walking around the neighborhood with my camera over the last month or so, I have begun to notice just how beautiful such plants can be. They don’t fit my preconceived notion of beauty. But there is nothing like a camera lens to help you focus on things that you might otherwise pass by. And pretty soon you realize that you are noticing the unusual texture of bark, or of a rock. Or that the light is hitting an ordinary leaf at just the right angle to make the leaf translucent. And you can never look at the world in quite the same way again, because you begin to see that everything is made up of small pieces of unique beauty. One day you look at a cactus growing in the midst of rocks and realize that it is starkly beautiful. Although I’m still not sure I want to plant it in my backyard.

Self Criticism

Cream in my coffee
Cream in my coffee

Such an interesting thing happens when we start to judge ourselves or our work. At first we might be really satisfied with the result, but then we often quickly devolve into finding something wrong. Or we set ourselves impossibly high standards, or we compare ourselves to others instead of comparing ourselves to ourselves. Or…….

That’s especially true, I think, for those of us with an anxiety disorder with a manifestation of OCD. I think everything I do has to be perfect. I have been working many, many years to internalize that perfectionism is not only not necessary, it’s not even attainable. Even if you excel at some things, you don’t excel at everything. In fact, the more expertise you have in one area, the more likely there are other areas of knowledge that you know very little about.

My husband once knew an aerospace engineer who was a world expert in liquid rocket fuel. If you asked him,  “What do you know about liquid fuel?” he would look at you, and without any hubris whatsoever, he would reply, “Everything. I know everything there is to know about liquid rocket fuel.”

If you followed that with the question, “What do you know about solid rocket fuel?” he would answer without the slightest trace of embarrassment, “Nothing. I know absolutely nothing about solid fuel.”

We can’t be great at everything we do. It’s impossible. So why do we think we can? What harsh standards we often impose upon ourselves in an effort to measure up to some imaginary bar rather than simply drinking life in, in all it’s gloriousness.

Yesterday and the day before I was happy with the start I had gotten on this new layout. It is a start. And I was super excited to share some of the images I have captured over the last month or so with my camera. Then I put up this photo of the cream swirling around on the surface of my coffee, and I noticed that it wasn’t perfect. It wasn’t, after all, the work of a professional photographer.

In what universe should I be comparing myself to a professional photographer???? I who have never taken a photography class, who have no formal training in art or graphic design, and who hasn’t done even semi-serious photography in about 40 years. It makes no sense at all!

But our emotions often seem to make little, if any sense. They do, however, often give us windows into our psychies, if we let them. And this window into my psyche told me several things:

  • I was too tired. Way, way too tired, and I probably needed a nap.
  • I’d been working at the computer too long without a break.
  • I’d definitely been trying to cull far too many photographs all at once, so my head had become muddled.
  • And…… I probably needed to grab my camera, and take the dog for a walk. Both of those almost always help.

So here is my cup of coffee one morning, with the cream wonderfully swirling and making patterns on the surface for a few scant seconds, offered imperfectly to you with hope that you will be gentle with yourself today. That you will relish new things that you see, or understand, or a new skill you learn. And at the end of the day that you can look back and find at least one thing that you are grateful for. I am grateful that I captured the patterns of the cream swirling on the surface of my coffee.

Welcome to the New Layout

View from the top of Le Mont-Saint-Michel
View from the top of Le Mont-Saint-Michel

I chose this theme because it not only showcases text and photos without much distraction, but also because there is a lot of flexibility in the layout. I can easily alter the appearance of a post depending on whether I am posting text, photos, videos, etc., without having to learn how to write CSS code!  So grab a cup of tea (or coffee or hot chocolate), pull up a chair, and settle into this for awhile. Scroll through some older posts, especially the ones that have pictures, and then let me know what things you like, don’t like, and changes you would like to see.  Please be patient while I try out new things, but give me your feedback.  With your help, I’d like to make the new layout stunning.

Upcoming Construction

Hi guys,

Please pardon the dust while I experiment with different layouts for Zebra’s Child. I have begun to get back into a former hobby of mine – photography. While we were in France, I carried my camera everywhere, and I began to realize how much I both enjoy the process of taking pictures, and miss it. I’m more than a little rusty – it hasn’t been an avocation of mine in, ahem…. several decades. Busy raising children, pursuing a career, and all that. But I have been drawn back into the thrill of trying to capture that illusive shot in just a certain way. I’m no where near being a professional, and, as I say, I am certainly rusty. But I am wanting a format for the blog that will showcase my photos, as well as the written content.

To that end, I am going to try removing the header image of the three zebras at the water hole. I love the image, but my thinking process is that the cool zebra image is what grabs people’s attention, and I want to shift the focus to my photos and the written content.

So I’m going to experiment. Being a person with an anxiety disorder, I am someone for whom change is difficult. It is an understatement to say that change raises my anxiety level several notches. I have already spent hours experimenting with the layouts of different themes, and by midnight last night I was thinking that making a change was crazy, and I just should stick to the layout that I have. That would be the nice, safe option.

But when I woke up this morning, I was back to the fact that the zebra header is so prominent that it dwarfs any photos that I put up. And I want to highlight the photos.

So. Here it goes. I’m trying to embrace change. I know that is how we grow. (I will keep repeating that mantra to myself.)

And I tell myself that I can always return to the familiar layout, comfortably nestled in the Chateau theme, if I’m not happy with the new layout(s). I do, after all, really like the picture of the zebras. Give yourselves a few days to get used to a new format, and then please, please let me know what you think. I would very much like your suggestions and comments!

Slow and Steady Wins the Race

I’ve been talking a lot about fitness, and how we can try to stay fit and healthy when the very nature of our disease means that we’re not healthy. We depend upon blood donors to stay alive and even the smallest, random infection can lay us low for days, or worse, put us in the hospital on IVs. But we have to work to stay as healthy as we can, or we are even more prone to succumbing to a viral or bacterial  illness. I’ve talked before about managing our limited energy, trying to stay tuned in to our bodies and not overdoing it, trying to be careful about how much we schedule in a day, and trying to rest when we need to rest, even when we really want to get just one more thing done, like a “normal” person.

But lately, I’ve talked more about how we can systematically build up our strength. One of my barriers to this is that if I’ve done a lot during the day, and am exhausted, I think, “Well, I don’t need to exercise today, right? I mean, I’ve done a  lot, and I’m exhausted!”

Here’s the thing I’m learning, though. Scurrying around, squirrel like, from one thing to another all day is not the same as exercise. Sure, we use muscles doing things like lifting grocery bags, taking care of laundry, etc, but it’s not the same as targeted exercise.

Using grocery bags as an example, carrying them inside is not the same as using barbell weights to strengthen our arms and shoulders, no matter how much we wish it was. In fact, using the weights on a regular basis enables us to carry in the groceries without getting as exhausted doing so, because we’ve built up those muscles in our shoulders and back. My small step philosophy: If you hate using weights, follow the advice one of my nurses gave me a few years ago, and use them while you are watching a show. (Or my favorite, while you are listening to music.) You won’t mind them nearly as much. And don’t start out with the heavy ones.

A couple of years after my first hospitalization post-diagnosis, I had lost so much muscle mass that my regular 2 lb weights felt like they weighed 20 lbs. That’s not an exaggeration. So I tracked down a sporting goods store that carried ½ lb weights (which by itself was a huge effort back then), went in (also a huge effort), and asked them where their weights were. The sales clerk took me over to the display, and I picked up the half pounders, one in each hand, and was pleased. The clerk, trying to be helpful, suggested that if I wanted something lighter than the 2 lb weights I had at home, that I go for the 1 pounders because the ½ pounders were so light it would be like lifting nothing. I told him that I was going to purchase both the ½ lb weights and the 1 lb weights, but that I needed to start with the ½ pounders because I had been extremely ill, and even the half pounders were going to be a challenge. He seemed to mean it when he said he was sorry that I had been so ill, and that he hoped the weights would help to build up my strength. (Note here: You often can only find ½ lb weights in the children’s exercise section. They were so small my hand barely fit in the bar between the ends.)

Several days later I started to use the half pound weights. I found I could do 5 repetitions of several exercises without completely wiping myself out. That was my goal: weights that I would be able to use that would make me tired, but not wipe me out. I worked at upping my repetitions and number of exercises, until I was ready to graduate to the 1 lb weights, and eventually get back to my 2 lb weights. I might eventually reach 3 lbs, but at the moment I’m happy with 2. When a routine gets easy, I add more repetitions and/or more exercises.

You don’t have to be a fitness nut to do this, and you don’t have to think of it as fun. I can assure you that my reaction is definitely not, “Oh goody, now I get to use my weights!” But I love what the process enables me to do: lift a box that needs to be moved and not have to wait for one of my adult kids to be around, carry in the heavy groceries without having to lie down for a half hour afterwards, or lift a toddler into a car seat.

And remember that building up endurance and strength takes awhile even for someone young and healthy, and I am neither. So all of this requires patience, something I don’t always have a lot of. But the rewards are worth it; I can work toward regaining little portions of my life, here and there. And that is something I used to think I would never be able to do.


I observe Holy Week (the week starting with Palm Sunday and ending with the celebration of Easter) each year not only because it is my Anglican religious tradition to do so, but because it grounds me. It gives me a structured time to go inward and review my life practices, how my changing life might still be of service to others, and the opportunity to meditate and pray more. It also is a week of intense physical work, as we are contracted for many extra hours of rehearsals and performances. By the time Easter is over, all of us with service obligations are pretty exhausted. But I wouldn’t trade it. I choose each year  to commit myself to the discipline because I come out refreshed, and with a deeper sense of purpose and a clearer sense of what is important in my life.

If yesterday, Good Friday, was about betrayal, denial, and trauma, all of which have parallels within our bodies and psyches as we try to come to terms with our illnesses, today, Holy Saturday, is about waiting. For me, today is about mysticism. A time to let all of our emotions flow through us, without judgement on our part. It is the flow itself that is important. Waiting expectantly, quietly, without being attached to the results. Waiting to see what will be revealed.

Fighting and Acceptance

Let me make clear that when I use the word “fighting,” I do not mean fighting against the acceptance of our disease. That mind-set is counterproductive because it uses energy that we desperately need to use to take care of our bodies and our spirits. As hard as it is, we eventually need to come to a place where we can accept our disease. It takes us time. Sometimes a long time. But only then can we begin to find out what combination of treatments/medications/diet/exercise/life-changes work for us and nurture our bodies, rather than placing additional stress upon them.

Rather, when I use the word “fighting,” I mean all the things we work to do to give our bodies every advantage. When we feel ourselves coming down with a cold, we often say something like, “I’m so tired. I feel like I might be coming down with something. I think I’ll go to bed early to give my body a chance to fight it off.”

“Fight it off” indeed. Our body has to go into overdrive to fight against the invading virus. In fact for those of us with a Primary Immune Deficiency, that’s what’s wrong: our bodies are no longer able to fight off invading pathogens.

So we need to have some fight deep within us that we can draw upon. Some hutzpah, some audacity. That doesn’t mean we don’t accept our condition. Acceptance is absolutely necessary, as is some degree of surrender: a realization that we can no longer just override the needs of our bodies and spirits, and just keep going at full speed. We need to surrender to the new needs of our body; accept them, work with them.

But that is hard. Really, really hard. We want to fight against it. Deny it. Rail against it. Because at some level we feel that our bodies have betrayed us. And all of those feelings have their place. But only once we surrender and accept our new reality can we move on to the true fight. The fight that I call Grit and Grace. The fight to do everything we can to help our bodies. The fight to still live with infinite passion despite the pain and the exhaustion and the fear. The labor to accept who we now are, and the work of discernment to find our new place in the world. For we still do have a place.

A place in this swirling universe that can enfold us in love and challenge and joy if we will only let it.

A New Feel To The Site

If some of you are feeling a little disoriented on the new site, I can tell you that I did too, at first. At the beginning of the process, it just didn’t feel like my site. I would look at previously published posts and almost feel as if someone else had written them. The words were the same, but the font was different, and that was enough in and of itself to make the site feel a little alien. But what drove me to keep on going with the redesign was that I felt strongly that the old formatting of the site just didn’t fit anymore. I no longer liked the way it looked: I wanted something cleaner, more streamlined. And I wanted more information on the side bar. Overall, it didn’t have the presentation that I now wanted. Don’t get me wrong, it was a great site for a long time. And I’ll be eternally grateful that my older daughter set the site up for me so that I could start blogging, at a time when I was waaaayyy to sick to even think about doing it for myself.

But I now wanted a completely different look. So I set to work last Thursday poking around on the WordPress site figuring out how I could reformat my blog. By Saturday I had a pretty clear idea of the look I wanted, and went about changing everything. I’ve got to say, WordPress does a really good job of writing tutorials about how to do such things. And anything you can’t find in the tutorials, you usually can find in the forums.

Over the course of the weekend, as I experimented with a host of different things, I became more and more comfortable looking at my previously written posts. And by Sunday night, it felt as if they had new home; less crowded and more comfortable than the last. I hope as the days go by, you begin to feel that way too.

And PS: I really like the new picture of the zebra that I found. 🙂