Posted for Becky B’s April #SquareTops
This is my entry today for Becky’s #July Squares. I thought that this shot would be an unusual one.
I needed to get up close to see if these flowers were real. They are going every which-way and looked like they had gone absolutely haywire.
Once I was only two feet away from them, I realized that everything in the arrangement was 100% natural, which surprised me.
Which come to think of it, is what it is like living with a Primary Immune Deficiency (PID) and fibromyalgia. It often feels like your entire body’s systems have gone haywire.
I was editing some photos whilst being tied to an IV for one of my immunoglobulin infusions. (For those of you new to Zebra’sChild, I get these infusions once every 3 weeks, and they take the better part of a day. But I am always and forever grateful for blood donors, as the gamma globulin that keeps me alive is ultimately obtained by many many filtrations along the flow chart getting from whole blood down to the isolation of gamma globulin. The infusions are hard on my body, and cause some severe side effects, but luckily over the years since I have been diagnosed (12 years, to be precise), the doctors, nurses and I have figured out some strong pre procedures drugs that keep me relatively comfortable. And with those in my system, I am usually able to doze or sleep for most of the time.)
So. I was editing some photos on my iPad, and one of the nurses walked by. I heard a quick intake of her breath, and then she said, “Oh, that is beautiful!”
“What? That’s yours? You took that?????”
“I didn’t know you were a photographer!”
“Well, I’ve begun to get serious about it again, and now I’m hooked.”
I showed her a couple of my other photos, ending with the one above. Her response was an incredulous “That’s amazing! I never would have thought that an opening to gas lines and some leaves on the sidewalk would even be pretty, let alone beautiful. As a matter of fact, I wouldn’t even have noticed. I would not even have thought of looking down. Thank you so much for showing me these.”
And that, right there, probably sums up as neatly as anything, why I take such joy in photography. It gives me a way to notice and zoom in (pun intended) on the everyday beauty of the world. I told her that I couldn’t help but notice things like the gas line and the leaves: the glint of sunlight on the steel gas cover next to the rusty brown of the accumulated leaves in the crack of the sidewalk was captivating. I can’t drive down a street without seeing at least 5 things I wish I could stop and photograph. Very few people even want to walk with me when I am walking the dogs because I keep stopping to take photographs. And it’s almost painful for me to walk by something beautiful without trying to capture the beauty on film. (Well, that shows you my age. I don’t use film of course, but somehow saying “capture the beauty digitally” just doesn’t have the same ring to it.)
For me, being a photographer teaches me how to see beauty, to see the unusual, even to see and empathize with pain. I find it almost impossible not to want to record that. And then I have the opportunity (which of course also involves lots of work) to take the recorded images and try to turn them into works of art. All of which feels like a gift.
Flaws in one’s beautifully manicured lawn. If one has such a thing. But even if one doesn’t, they are still considered undesirable. However up close……..
they are rather marvelous.
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.