Zebra's Child

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

Category: Fighting

Tree Climbing

Liquid Amber in Summer   ©Zebra's Child

                 Liquid Amber in Summer                       ©Zebra’s Child

When I was a girl, I loved climbing trees. I didn’t have the opportunity very often since we frequently lived in places that didn’t have trees either in the yards nor lining the street. So when I was visiting somewhere where there were trees to climb, I seized the chance. I loved climbing up the tree. My muscles felt good, the climb made me feel strong and in control, and if the tree was tall, the view from up high was fantastic. I loved climbing so much, I would climb up and up until the branches got too thin to hold my weight. I would survey my surroundings, and feel like I was queen of all I could see. There was only one problem. I was afraid to climb down.

Climbing down is completely different than climbing up. Climbing up I could see and reach for handholds and footholds. Climbing down….. not so much. I could glance down to get the general location of the lower branch, but then I would have to look back up to see where I should place my hands and I would have to feel around for the next available foothold. That was the frightening part. I had to trust that my body moving through space would know what to do. Space and I don’t have the most comfortable relationship. My depth perception isn’t completely accurate due to my vision, my balance has been a little off because of repeated severe ear infections since I was a kid,  and my sense of volume in space flat out isn’t reliable, and never has been. I can train my body to move through space accurately if I practice enough: driving, dancing, sailing, yoga. But something like gymnastics where I might fall from the parallel bars? Not a chance.

So climbing trees was an interesting thing to love doing. This was never a case of “Oh no, what have I done?” I always knew when I started the climb that I would have trouble getting down. But the climb up was so exhilarating that I almost always chose to climb anyway. Among other things, I knew that I couldn’t stay up in the tree forever. I would eventually need to eat and sleep, and I could do neither while up in the tree. So I knew from the get-go that I would eventually force myself to climb down. But the climb down never got any easier nor less frightening.

I’ve thought a lot about why I loved it so much, because it was more than just the exhilaration and the view. I think it had to do with the feeling that while I was up in a tall tree, nothing bad could get to me. As a child, I couldn’t depend on my environment. It would be nurturing one minute, and 5 minutes later it still might be, or it might not. I retreated into fantasy worlds based on fictional characters  and settings from the books my mom read to me. I excelled in school, mostly, and that also became a retreat. It took me awhile to figure out how to read (I’m moderately dyslexic), but once I did, then new worlds became available to me any time I opened a book. Worlds where there might be danger, but worlds in which I knew that everything would eventually turn out all right. The characters were so brave in those books. At least once I progressed beyond “See Spot run.” (Spot was a dog, for those of you who didn’t grow up on those readers.)

Here’s the important thing, though. Everything turned out ok in those books because the main character was frightened of something bad, and she faced it. She (or he) not only faced it, she did something about it. It didn’t mean the fear went away. It didn’t mean she just resigned herself to evil. She fought against the bad thing, whether it was a monster, an evil stepmother, or a thief. She fought against it (usually with help from a friend), and she kept on fighting against it until things were put right. Those books of fiction I read when I was a kid gave me the courage to keep putting one foot in front of the other with the hope that one day things would be better. I think climbing down from trees even though I was afraid was part of that. I think it was a tangible way that I could prove to myself that I could be brave, even if only for an hour or so.

Transplanting

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.

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.

Start Small

Really, really small.

Microscopically small if necessary.

I don’t know about you, but I respond best to success. If I never seem to succeed, I will eventually give up. I’ve got a lot of grit, but really? Constant failure does me in every time, and I think that’s true for all of us. So if those of us with significant health issues want to start taking a more active roll in improving our health, where should we start? We can’t even dream of comparing ourselves with people who are able to make it through an hour at the gym every day, or run a mile, or, heck, even manage to have enough energy to make it through a one hour gentle yoga class. So what do we do?

We start small. Really small. Never mind inch by inch. I’m all for millimeter-ing. We take steps so small that perhaps only we can see it. A close friend of mine recently had a fall that caused many broken bones, which was then followed by a stroke that left her right side paralyzed. She is a go-er and a do-er, and has been all her life, so this was extremely difficult for her. I suggested that, in consultation with her physical therapists of course, she set her first goal at something like 2 steps unassisted. Once she met that goal, she could raise the bar. And I reminded her that the more often she met her goals, the faster her healing would progress.

Admittedly, those of us with chronic conditions have bodies that respond slightly differently than someone who was basically healthy before an accident or injury occurred. But we can apply the same principles. Remember that 15 Steps Was an Aerobic Activity. And after my first hospitalization 6 years ago, my goal was to reach a time when the 15 steps to the bathroom and back would only leave me shaking in a fetal position for 50 minutes instead of an hour. It took a many weeks, but that time did finally come. And over the course of several months, the trip to the bathroom got to the point where it no longer wiped me out. Months, you say??? Yeah, but that was as big a victory for me as running a 10K marathon would be for many people. And runners spend months training for a marathon event, right?

So we need to give ourselves pats on the back, kudos, blue ribbons, gold stars, badges, trophies, anything that will let us know that we have accomplished something mighty.

For we are Mighty Warriors.

And maybe we should start a Mighty Warriors club.

Who’s in?

There Is No Beginning

I did not get the cleaning done yesterday that I wanted to, but I did get several errands done, including getting the dog groomed. That was a biggie because she had begun to stink. And they were errands that I would have put off until “tomorrow,” or the next day or…… if I had sat down at my computer. So it was still a productive day in terms of the daily living of life chores that I find so difficult to accomplish now-a-days.

One of my more pleasurable errands took me into Target which, believe it or not, I find relaxing. Even if I am there to buy practical things, as I was yesterday, there are always pretty things to look at: makeup, clothes, jewelry. And that always relaxes me.

I had paused to look at some necklaces, when two of them in the locked up case struck me. They were small, and probably aimed at the pre-teen set, but it was their very delicacy that had first attracted me. Each one was affixed to a card to better display it, and had a nugget of wisdom written at the bottom. The two that I kept starting at were an infinity symbol and a very small solid heart. The infinity necklace had written below it, as best as my memory can recall, “There is no beginning and no end. Just life lived with infinite passion.” And displayed very close to it, the card for the small heat said something like “Small acts done with a great heart.”

Taken together, they are a pretty good description of what I strive for. My “infinite” passion certainly feels less than it once was. In fact, even thinking about infinite makes me tired. Truly. I can no longer sing, or play with my grandchild with the same energy that I once had. It is hard to live completely in the moment, when chronic fatigue dogs my every step and I frequently find myself wondering, no matter how much I am enjoying something, “How long before I can lie down?”

But I think that I can do small acts with a big heart. Sometimes it’s smiling at someone as I pass. Or maybe it’s putting away the dishes in the dishwasher so my husband doesn’t have to do it, even though it takes the last bit of energy I have. Sometimes it’s staying in bed even though I don’t want to, so that I don’t further exhausted myself and thus increase the work my husband has to do. I can no longer measure my life by the things I can accomplish. Right now I cannot teach a class of fifth graders, and I don’t think I’ll be hiking to 10,000 feet anytime soon. (And yes, I am still super proud that I did that!) But I’m not going to give up on living. I’m just not. And I can do things with a big heart. And with as much infinite passion as I now posses, which means that it is, for me, right now, still infinite.

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.