Category: Living With CVID
Top Future Blooms
Posted for Becky B’s April #SquareTops
July 9 – Blue Squares – Finally Enough Parking For Me
This is my entry today for Becky’s #July Squares. I thought that this shot would be an unusual one.
This Was The Craziest Bouquet
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.
Posted to Weekly Prompts: Haywire
Beauty In Surprising Places
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!”
“Thank you.”
“What? That’s yours? You took that?????”
“Yes.”
“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.
Dandelions Are Considered………
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.
Appearences Can Be Deceiving
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.
Pictures in Mud
One of my callings, or gifts, or weirdness, I don’t know which, is seeing beauty in the mundane. Or sometimes even seeing beauty in what other people would consider ugly. I was walking home from the grocery store today, and noticed that a tree was reflected in a mud puddle. I thought it was beautiful.
Health As We Age
To say that a lot has happened in my life in the last two years would be an understatement. But today I would like to focus on something good: the fact that our moving back north and into a retirement community has improved my health significantly.
My husband and I had lived in a communal living situation before we were married. While no one had the full responsibility of the house, or meals, repairs, etc, we all needed to pitch in and help. But living in a retirement community, especially in the heart of the City of Oakland is very different. Essentially our monthly fee takes care of almost all of those chores. It has given me the wonderful freedom of time that I did not have while living in our house. I no longer have to spend hours at the grocery store, as dinner, the most complex meal, is provided in our monthly fee. The few things I do need in drug stores, grocery stores, or hardware stores are only 2-5 miles and about 5-15 minutes away. And while I prefer to support local merchants, if I am ill and cannot get out of the apartment, I can always order things on line – something I find I am doing with more regularity now. Oh, and our medical care? We specifically chose a retirement community that is very close to our Kaiser: only 1 mile away!! Also, I am no longer responsible for repairs. While it still gives me great satisfaction to fix things so that they work again, the whole process of finding the replacement part you need, and then of course almost always discovering that the repair takes way more time than you thought it would, is exhausting. I’m willing to give up that “It actually works!” thrill in exchange for being able to pick up the phone and have the repairs done by the staff in the building. Each time I am able to do that, I realize that it has saved me several hours of hard work. And more importantly, saved me the extreme exhaustion that comes from that.
However, the biggest improvement in my health since the move back to the coast of Northern California has been getting out of the terrible smog and traffic congestion of Los Angeles. While the Bay Area does have some smog, it is quite mild compared to LA. And traffic congestion, while it certainly exists, is also not as bad. And the bottom line? I don’t need to get on the freeway during rush hour. (Insert very very happy face here.)
Friends are even more important as we get older, in part because we no longer have the daily interactions with people at work. In fact, in older age, one of the predictors of poor health in general, and poor outcomes of medical events in particular, is isolation. My husband and I were lucky enough to have moved into a 23 story building with 250 residents. We are a community with a common dining room and many activities, so I have the pleasure of meeting many friends. Far more friends, in fact, than I think I have ever had at one time. And with so many residents in the building, it’s possible to find a few close friends right here. And perhaps the best part? One of our daughters, her husband, and our grandchildren live only 6 miles away, so I am able to be very much involved in their lives. The presence of people I know and love has been wonderful.
As my husband’s and my health steadily declined over the years that we were living in the house in Pasadena, we invited fewer and fewer people in. It happened slowly, and so we didn’t recognize how isolated we had become until we moved into this retirement community. After only a couple of months here we realized that not only did we have family close by, but that we were once again surrounded by friends and had interesting things to do, all without leaving the building if we didn’t feel well enough to go out.
And on a final note, I just have to say that the weather here in the East Bay always feels as if it was created in heaven. The moderate climate has been a huge help. It rarely gets as low as the 30’s at night, and it is very unusual for it to be as high as the upper 90’s in the summer. The area in which we first lived in Southern California for 25 years could get up to 114 degrees in the summer. I’m not making that up. The extreme heat would often start in April and last until the end of October. (With the June Gloom giving a short respite.) It was routine during those months for the temperature to be 102 – 106 degrees. But 110 – 114 was a special hell. When we moved to Pasadena, the summers were at least better, but still ranged from 96 – 102 degrees. I have never tolerated heat well, and after my immune system collapsed, the hot summers left me constantly feeling ill and unable to do much of anything. In the Bay Area’s temperate climate, I am able to be much more active, which in itself improves both my health and energy. Adding to that I can tell you that we have practically no flying bugs. I’n not saying that flies won’t buzz around garbage, but we have so few flies and mosquitoes that in general we don’t even have screens on our windows. The wall in the living room that opens out to the balcony is made entirely of glass. (Tempered glass in a temperate climate.) When I open the sliding glass doors, and there is not even a protective screen, I feel that there is no separation between me and the outside. Living on the 10th floor and standing just inside those open doors, looking out over roof tops and towards the hills makes me feel almost suspended in space, and gives me the sense that I am one of the luckiest people alive.
I am deeply saddened that my husband didn’t have longer to enjoy our life here, but I am profoundly grateful that we moved when we did. He thoroughly enjoyed the two and a half years he did have here, and I am healthier, have half of my family close by, and am surrounded by many people who truly care for me. I sometimes think about what my life would be like if my husband had died while we were still in our house, and I realize that it would have been so much harder. If I had been left on my own in the house, I wouldn’t have eaten adequately, I would have wandered around in an empty house with only the dog, I wouldn’t have had the health or the energy to meet up with friends, and I would have become extremely depressed even beyond mourning the death of my husband. I would have known that I couldn’t have continued to live in the house alone, but would have had such feelings of conflict about the process of leaving, that it would have felt overwhelming to sort it out. Neither my husband nor I were blessed with good health, and at first I was angry that we needed to give up our beautiful Craftsman home and move into a retirement community when we were so young. But I am so very grateful that we did.
Tidal Waves
My husband and I are in the midst of a multitude of changes in our lives. Not little changes like the new, clean bedroom carpet we installed to replace the 15 year old one that bore the brunt of many accidents our puppy had when she was new. No, I’m talking about huge, sea changes. The tidal waves. The ones that smash into to you and pull you under and leave you desperately struggling toward the surface, hoping that you can reach the air before you lose consciousness and your lungs fill with water. The events in life that you survive, but leave you forever changed.
Due to various medical conditions each of us has (in my case, CVID), each of us are exhibiting symptoms and illness that are more typical of someone 10-15 years older than we each are. Admittedly, our children are in their 30’s, and it’s true that we would no longer be considered young, but we’re not considered old either. We in fact know several people 15 – 20 years older than we are who are in far better health. Certainly each decade of aging after age 40 or so leaves your health and physical strength a little diminished. But it is especially hard when it catches you unaware because what is happening to your body shouldn’t be happening for at least another 10 years. The poor balance that causes falls. The eyesight that’s no longer clear. The job loss due to poor health, the surgery that didn’t go well, the occasional inability to make it to the market when you need food, the necessity of caring for an injured partner when you yourself are ill.
So many things that taken individually seem small in and of themselves, and indeed might be if they were happening to only one of you, but they are things that become insurmountable when when added together between you both. They start out happening here and there, but then one day you realize that some of the simplest tasks of daily living have consistently become amazingly difficult. You go on with the business of living as best you can, but there are empty spaces that used to be filled, and you realize that you didn’t fully notice the common things. The little things that bring glory to everyday and you don’t notice that they are there and a glorious until one day they’re not. Then you realize that you didn’t say goodbye properly, or whisper “thank you” often enough for the blessed ordinariness of each moment.
And then with one thing and another, and all those ordinary things that you that you took for granted but can no longer reliably do, you one day realize that you have to give up things that you deeply love and can’t image living without. You start by changing the little things, the things that won’t cause you huge amounts of grief. You give away a single large piece of furniture that was causing one of you to trip and fall, and you hope and pray that that will be enough. Enough to enable the two of you to go on with life in the new normal. Then you find that you have to make another change, and then another. And gradually you realize that none of these little changes are going to be enough, and you are going to have to change major portions of your life. You think you can’t possibly, but you do. You do because you have to. But it hurts. It hurts when both of you age before your time. All you want is your old life back, and things to be as they were. But there comes a time when you know that they never will be. And what do you do then? How do you navigate through a series of decisions that you know are going to cause you such pain in the process of letting go?
Zebra's Child 