Zebra's Child

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

Category: Grit and Grace

I Will Move Mountains……….

Well, not really, but it sounds good.

I was on the phone today with a company that makes clothes for people who work outdoors. Their clothing promises to be both comfortable to move in, yet tough and durable. I explained that I am a (amateur) photographer who has been known to climb into bushes,  scrape up against rough walls and kneel down in muck to get the shot that I want. Often while walking two dogs. And I needed a pair of pants that would stand up to all that.

This photo is a case in point. I was squeezed between a bush that was taller than I am and a rough old brick wall, all the while holding on to the the dogs’ leads. They weren’t crazy enough to try to follow me into the small space. But they waited patiently.


Image: Zebras Child 2019

Don’t know about the pants yet. I’ll see when they arrive.

In Memoriam


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


Transplanting Hope      ©Zebra's Child

                      Transplanting Hope                ©Zebra’s Child

Sometimes we have to transplant hope. To physically move it into the dark corners of our lives when we cannot see anything but destruction. Sometimes the destruction is within us: our medical disease, our prejudices, our failure to act to right a wrong. Sometimes it is out there in the world: discrimination, hatred, violence. But as human beings, we need to hope. If we don’t hope, we are immobilized by exhaustion and fear, and our necessary vision and creativity desert us. That’s when we need to remember that sometimes it takes effort to summon hope. It takes some digging, some watering, and then some care and attention in order to see it thrive. It’s easier when hope simply springs up unbidden and is there when you need it. But other times we have to go searching for it and then physically transplant it. It may at first look out of place amidst the destruction. But that is where it is most desperately needed.

Improbable Hope

Improbable beauty

Improbable beauty

There are no flowers like this anywhere in the neighborhood. Yet somehow the winds brought seeds of beauty, revealing hope in improbable places.

There Are Those Mornings………


When you feel like this. You wake up, you look rather distrustingly out at the world, and you think, “Really? You want me to actually get up and function in the world? You have got to be kidding me.” At least that’s how I felt Saturday morning, which was the morning after I had been hooked to an IV for 7½ hours, and 2 hours the day before that. An honestly, that’s kind of how I felt the next morning as well. My head still hurt from the IVIG headache, and my muscles and soft tissue still haven’t forgiven me for pumping all those medications through my body.

But I also know on mornings like this that if I don’t get up and start moving, I will feel worse. The infusions cause their own muscle pain but they also aggregate the fibromyalgia. And with fibro, the worst thing you can do is to be immobile. It’s true that for a few days after my infusions I can’t walk a mile, or do any sort of prolonged workout. (Well, prolonged for me, which to other people would probably be considered very short.) But I know that I have to get up, get my muscles moving, and do things.

I also know I need to be gentle with myself and not push myself too hard, which I have a tendency to do. Yesterday I wanted so much to walk the dog 0.75 of a mile, but knew I would probably regret it, so I settled for ½ a mile. I’m glad I did. 20 minutes after getting home I crashed, and had to lie down for half an hour. But I did feel better for having walked. And the dog definitely was happier. Great companions, dogs. They encourage you to do what you know you should.

Mornings that feel like this, I think of Judith Viorst’s wonderful children’s book Alexander and the Terrible, Horrible, No Good, Very Bad Dayin which everything seems to go wrong for the youngest of three brothers. Repeatedly throughout the book, when things don’t turn out the way he would wish, Alexander bemoans his fate by saying, “I think I’ll move to Australia.” Our 30-something older daughter can still recite it word for word. Alexandr’s phrase has become something of a short hand code within our family to signal that nothing seems to be going right. The book ends with Alexander’s mother tucking all three brothers in bed for the night and reassuring him that “Some days are [just] like that… even in Australia.”

But you needn’t to be a child to enjoy this book. It is worth pulling out anytime you have a morning like this. Or a day like this. It will get you smiling, and maybe even laughing. And laughter is good for the soul.

Because, of course, (to paraphrase):

~Some mornings are like this,…. even in Australia.

Necessary Emotions

Getting to the point where we accept our medical condition does not mean that we don’t go through strong emotions getting there. Nor does it mean that we won’t continue to have strong emotions. Accepting the limitations imposed by our bodies dose not mean that all of a sudden we say, “Yea! I have a disease that could kill me at any time and puts me in daily pain.”

And it shouldn’t. To reach the point where we accept our current life means that we have to grieve the loss of our old one. And grieving is work. Hard work. Elizabeth Kübler-Ross, who wrote the seminal book, On Death and Dying, among others (and which was required reading when I was in nursing school all these many years ago) talks about the stages of grief. We now know that those stages do not always occur in the order that Kübler-Ross lists them, but all the stages are necessary. We may find that our natural process is to skip over some and come back to them later, but going through the stages is not an option. If we are to truly heal from grief, we must experience it.

There is, unfortunately, no shortcut. I wish there was. Oh, how I wish there was. And grief, as any strong emotion, has a sneaky way of surprising you. You think you’ve worked through it, and then wham! You read a passage in a book, or a memory surfaces, or you see someone doing something that you love to do, and no longer can, and all of a sudden you feel like you can’t breathe, the sense of loss is so strong.

But it is all necessary. Never feel guilty about grief. Or the feeling of anger, which is actually a stage of grief. Those feelings are cathartic, and help us heal. They help us reach a state of equilibrium where we can begin to discover how we can best live our new lives. Lives that may be circumscribed with unwelcome limitations, but lives which nonetheless still give us opportunities to live in the present, with whatever degree of Grit and Grace we can manage. Some days it is more than others. And that’s ok.


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.

Machine Girl

Machines. I like machines. They do things for you. Take a good circular saw, for instance. Or a chop saw. Or a table saw…. They cut your work by about 99%. Or a good drill. Mmerrrrrrrrr. That is a sweet, sweet sound. I asked for a drill for my birthday present about 36 years ago. It is a middle-of-the-line Sears Craftsman, which is what my father-in-law always said was the best value for the money. He was right. That drill still works as well as it did when it was new, although I can’t use it as much now. When I showed it to him after I had received it, his reaction was, “Man! You could put up siding with this. It has enough insulation around the motor to be able to use it all day.” That pleased me enormously. I didn’t have any intention of putting up siding, as my small frame couldn’t lift wooden panels that large. But I did use it for repairing things around the house. Or very occasionally, building things.

Or think about cars. You only have to feed them petrol and oil occasionally. No oats required. And the occasional repairs and maintenance are less than the vet bills for a horse, I can assure you. You might argue that the older the car gets, the more maintenance and repairs are needed. But the same thing can be said about horses. The older Old Bess gets, the more she needs to see the vet. (And you think the vet is expensive for your dog?) Your mechanical horse doesn’t need to be curried, exercised, or sheltered. I mean, it’s nice to shelter your car in a garage, but it’s not necessary.  And let me just say that you don’t have to shovel out the muck from your car’s stall. No. Muck. That’s a plus right there. Admittedly, the car doesn’t muzzle you affectionately, and you can’t feel it’s warm, sweet breath on your neck on a cold day. But, come on guys, you just need to buck up. You have to sacrifice some things after all. And if you absolutely insist on warmth, there now are cars with heated seats. Another great invention, since they keep you far warmer than the car robe that I had to drape over my lap during a couple of New York winters just to keep from freezing my bazooties of in the back seat of my grandparents’ car.

All this, of course, is not even mentioning such modern inventions as vacuum cleaners, dishwashers, and the like. My grandmother (the same one who always had afternoon tea waiting for me), had an electric wringer washing machine that we had to connect to the sink once a week, and then hang the laundry out in the yard or in the cellar. I swear to God it looked like this, only our wringer was electric.

Old Washer-L.jpg05cc6bfd-9c2d-4d25-81a2-49bee178061aLarger

And no, it’s not because I’m that old. Until the two years my mom and I lived with her parents, I had only seen washing machines like that in pictures. It’s because my grandparents lived out in farming country in New York where everybody had their own well, and we were in the middle of a drought. I was told at the time that the wringer machine used less water than a modern washing machine, and it was thus a necessity, but I also suspect that the State Historical House we lived in, built in 1804 and proudly displaying a New York Sate Historical Landmark sign out in front, didn’t have the necessary electrical wiring for a more modern machine.

I write all this because, well, I sometimes have to remind myself that I am more than my CVID deficiency. And I truly do like machines. I miss being able to do all the repairs around the house. When our younger daughter and her family visit and they do major repairs for me, such as insulating the garage, I will go out and stand there, just smelling the sawdust. It has such a clean, productive smell. Hanging around in the garage is bittersweet, because it makes me realize just  how much I miss being able to do such things. I didn’t always enjoy the actual process; sometimes it was really frustrating when things didn’t go the way they were supposed to. But when I was done, I would have such a feeling of accomplishment. There’s just something so satisfying about looking at something that you have fixed or built with your hands (and machines!), and knowing that now it works. Or it’s something that can be used. Like the bookcase I once built for our daughters and they used for the next 10 years. I miss that. But I am grateful that others can do it for me. And I can still haul a couple of 2x4s in my car when I need to. I can even load them in, which I couldn’t do two years ago.

Our lives change with CVID. But don’t all lives change? My life changed when I got married, when I gave birth to my children, when they went off to college, when my husband has gone through illnesses. Our lives change when we lose loved ones, or we accept a new job. And change, even the best change, is hard. We have to accommodate and learn to live within our new selves. What we need, I think, in all cases, is to possess a combination of grit and grace. In this case, we need grit to keep fighting, through trial and error, to improve our health and get the necessary medical care. To make it through another day, to still manage to love and care about others. And the grace to accept that we are not the same as we once were. That our lives are in many ways diminished, more unpredictable and constrained. But we’re still here. And fighting. And that’s sayin’ something. That’s sayin’ a lot.