Tell me what love is. That seems like such a simple statement doesn't it? Five words. If some alien species came from billions of light years away, and asked you to explain it what would you say? We all have so many types of relationships in our lives. Parents , children, friends, spouses, we even have relationships and feelings for places , animals, things. Do you have an idea in your mind of what makes up love ? If you had to think of all those relationships together, people, places, things, etc. that you love, could you pick out what it is about them that makes you love them? Is it one particular thing? I've wondered a lot about that lately. I'm not really sure why. I guess maybe all the extra time I've had on my hands. Or maybe being ill just makes you think philosophically. But, I think I may have laid my finger on what thread runs through all my "loves". I love "odd". The odd duck. The odd one out. The person not the most beautiful. When I was growing up, I was homeschooled, which was very odd at the time and that might have contributed to my love of the eccentric. I didn't mind having the nerdy friend , the overweight friend, the mental friend, although at the time, it never even dawned on me that they were odd. We just were who we were. I got a job and went out into the great wide world full of people even more odd then I had ever met before. The homeless, the mentally ill, the weird, the wild, and the wacky. I loved it. When I fell hopelessly in love with "the ONE" ~ he was a man 13 years my senior , who was introduced to me by a friend , and we had our first date at of all places, a nursing home. (For a charity band I sang with.) So, odd, and love just go hand in hand to me. The three -legged dog, the Gremlin lemon car, cast offs and the unwanteds, the vintage and the scuffed, the wrinkled and the old. Beautiful to me, and all of them to me, worthy of this thing we call love.
I’ve been having a lot of interesting conversations lately on some of my lupus pages. Our current thread of conversations started with rashes. (Having a chronic illness leads to some weird conversation threads….) See the name lupus is generally thought to have originally come from the 13th century and stemmed from the red rash it leaves on the sufferer’s face , which some physicians seemed to think looked like the bite of a wolf. Now in this day and age of political correctness we refer to it as the “butterfly” rash so as not to offend anyone.( Another term for the rash, the medical one, is malar rash.) Well, we talked about butterflies for a while, and some of us do get the butterfly rash, and some of us don’t. ( I do.) But one of my friends, new to the lupie world, asked a very good question. She wanted to know , how come so many of us post butterflies for our support and conversation pages, when our disease is named for the wolf? I guess it kind of took me aback. I know the reasons we post the butterflies. They represent change, as in constant change of the disease we are fighting every day. They represent strength, the strength it takes to struggle and emerge from their cocoons in order to fly. The fact that though their wings look quite delicate , but are actually a lot stronger than they seem. And of course , they’re pretty. They also represent new life and hope in many faiths and religions. But then I began to wonder if maybe we hadn’t given the wolf a bad rap. I myself have had such a severe case of lupus that thinking of the wolf as my friend has not been necessarily my first thought in this fight. But perhaps I’ve had one of my best players “on the bench” .Maybe I’d been bringing a butterfly to a wolf fight so to speak. Wolves are scary looking animals. I mean they’re huge for one thing! , weighing anywhere from 80 to 140 pounds. They are fierce hunters , known in packs to take down even the North American bison. So if you think about having a disease named for something so aggressive , that can be pretty intimidating! But then I decided to do a little more research on it. I said to myself if I can use the wings of the butterfly to my advantage in my psychological war, I’m going to get some of this lupus vulgaris fierceness for myself too! Wolves as symbols are part of many cultures from all over the globe , but I suppose the most notable of them are the North American Native peoples. Just reading through the stacks and stacks of information on their histories could take a lifetime to learn about their amazing stories, but some of the ones that stood out to me the most were the ones that talk of the wolf as standing for “teacher”, “guide” , “strength” , “unafraid in the face of death” ,but also possessed of deep faith and profound understanding. I was very surprised. I think maybe people see the images of the wolf devouring its prey and think only of their bodies being consumed by this hideous alien disease. After doing all my reading today, I’ve decided to fly into battle on my butterfly’s wings but with a pack of wolves for backup. I think I can use some more teachers, guides,and warriors with strength unafraid in the face of death. Not just fierce hunters but possessed of faith and understanding too. Cause after all, when you’re fighting for your life, why leave your biggest, scariest looking soldiers at home?
I have never been what you call the most graceful person. You know that stage you hit when you are 10 or 11 and your body seems to be growing faster than you can keep up and you are all arms and legs? You stumble around, and bump into stuff. You trip over your own feet. The ground is flat, but you fall anyhow. Well, I never did grow out of it. Sucky part is, I didn’t even get the “growth spurt” to go with it! My husband sweetly says I am the POCKET version. But , back to the graceful part. I have whacked my not-so-funny bone more times than I care to remember,thumped my head getting in and out of automobiles, dented my knees on chairs, actually broken my foot, on the vacuum cleaner of all things, more than once, (same foot, same vacuum cleaner!) and as of yesterday , whacked my right four toes so hard on the coffee table that the two middle ones are now the color of coffee without cream, bent at a lovely angle, and the middle one is missing its nail. Needless to say, I was sorely tempted to turn the air as black as the toe , but refrained. Inexperienced people would be on the phone about now with their physician , but I, who seem to have taken small bone crunching up as some sort of extra -curricular activity know that they would only do with it what I have done, which is tape it , and try to keep pressure off of offended member. Needless to say, reporting for today, said toes do NOT really look OR feel any better, so I am sticking close to the sofa today. Positive point of that being , maybe I can’t injure myself any further from there! 🙂
Ending of spring and coming of the summer here in southern Arkansas. I used to love this time of year.(Now to give you an idea of the area where we live and how rural it is, I didn’t realize this, at the time, when I was growing up in the 1980’s , 90’s , that our area really ran about 30 years culturally behind from everywhere else. Now with the availability of the internet , and all, and everyone pretty much having it , we are maybe only 5 years behind , but you get the idea. ) When I was a kid, we had a party line telephone way longer than anyone else. We walked where we went, or biked, or rode our horses. I had two girlfriends that lived 2 miles down the road from me one way, and two boy “friends” who lived down the road two miles the other direction, and we spent every minute of every summer together. We tore down the road screaming at the top our lungs to the river just a hop skip and a jump from any of our houses, and spent our days getting so burned, mosquito bitten and water logged, that we couldn’t wait to do it again the next day. We didn’t have cell phones for our parents to call, or to call our other friends. We stayed gone from daylight til dark, and as far as I know , don’t guess our parents worried about anybody carryin’ us off. When we needed spare spending money , we earned it by helping one another’s Grandparents , hauling hay into the back of old Chevys , drinking ice cold cokes out of the beat up cooler Uncle Cecil threw in the back. Or working for Granny Jo, standing barefooted in the garden picking green beans until our fingers were just as green as the beans themselves. Shucking corn, covering ourselves in the silk of those golden rods like some kind of Central American princesses with tangled woven necklaces, we ‘d throw ourselves up in the hay loft when we were through, and work out our plans for the next day. The boys would walk home to their house, and if we had the strength we’d go into bed, and if we didn’t we’d just sleep in the loft. You don’t know at the time that it is the magic time of your life, that gilt – dipped year that you can never get back. Or maybe you do, and you are just too afraid to speak of it. I got my first “real ” job not long after that, when I was 13. Waitressing. I met people from other places. “Real ” towns. Big towns. I heard that tone in their voice when they heard my accent. I didn’t realize at the time that it was condescension. That they thought I was just a hillbilly. A redneck child who knew no better than to think that my world was all there was. But now that I know, I am not angry. I only feel sorry that they feel that their life IS all that matters. That they will never know the feel of fresh tilled garden dirt underneath their feet. Or the joy of ice cold river water on hay-burnt , mosquito-bitten skin. I wouldn’t trade my corner of the world for theirs, or the way it was back then, for anything.
Yesterday was POP for Lupus Day. That’s Put On Purple Day. I put my purple on , but I think my pop about pooped about before I did. I was feeling pretty good, overall, I guess. But, I may have overdone it when I decided that with the help of hubs and sons I would do the store. Well, that and the motorized cart. I don’t know why that is still exhausting , but it is. You would think that just sitting in the motorized cart and doing the shopping would not be tiring, but somehow it is anyhow. So, needless to say, I am not flying high today. Anywho. I spent the day trying to rest, and watching my favorite “fighting” movies. You know the kind of movies you watch to remind you , that you can fight on a little while longer, or maybe WHY you started fighting in the first place. I guess I ‘ll start off by saying what I watched last, and end up with what I watched to start off with. Switch it up a little.And this is kind of a long post today , but what can I say, I felt windy?( Don’t feel obligated to read it!) I ended up with Rio Bravo, you know good old classic John Wayne movie. Whole town against basically one man. Well, three men, but one ‘s a hopeless drunk, and one’s a gimpy old cripple. But hey the first one’s John WAYNE!! So , of course, it’s a great movie, he rides the horses, shoots the bad guys, kisses the girl , and saves the day. We fight on. But I’ll end off this blog posting with what started my “fighting session”. Million Dollar Baby. Now , Spoiler ALERT ahead. IF you haven’t seen this movie, then stop right here, ok? Ok. We’re good. 🙂 I both love and hate this movie. I mean anyone who’s seen it knows the reasons why. It kills you. You see Maggie, and Frank, and I just always call Morgan Freeman’s character the old man, even though I know that isn’t his name. You watch the movie and see a thousand little things , even though you don’t know how you notice them . You just know that you are noticing them. I mean the movie’s about boxing, you tell yourself, how important or emotional is this going to get. And it just sucks you right in, doesn’t it? But for me the most memorable scene in the movie was one that didn’t even have Frank or Maggie’s character’s in it. You know that scene near the very end of the movie, when the bully boxers are picking a fight with the boy Danger? And the old man comes from the bathrooms, and catches Danger just in time, before he hits the mats? He is just steadily encouraging that boy. Then he asks if he could borrow his gloves. Well, the old man used to be a boxer, big on the used to be. He’s missing the sight in an eye. He always told people he fought 109 fights, but always wondered if he had maybe had 110 left in him. Well, big bully boxer dancing around, taunting the old man, “Ohhhh, a retard , and an old man?” And the old man just knocks him right in the face and puts him out. Right on the mat. He lays there drooling. Blood oozing. Tooth falling out of his head. Old man says, ” 110.” So to me, the lesson almost through the whole of my “fighting session” of movies today is the one I learned right away from Million Dollar Baby. The one Danger learned, When you shouldn’t fight. The one the bully boy learned , That you CAN’T fight. And the one the old man learned, That you still have that ONE fight still left in you.
I’ve always loved to write. As far back as I can remember words have held a certain magic for me. My mother tells me I learned to read and write when I was only 3 years old. Of course the fact that I had an older sister who loved to play school , and I was her only sometimes (unwilling!) student might have come into play with that! But since finding out that have lupus almost 15 years ago, writing has taken on a whole new meaning for me. Lupus is a terrible disease. It takes over every aspect of my life, and for a long time I didn’t know how to deal with it. I was very young when it started affecting me, (14) , and they had no answers, as to what might be wrong with me. I went from doctor to doctor for about 5 years before I got a diagnosis at age 19. I actually don’t count those five years in the 15 , although I guess I should! But when I got diagnosed the whole world spun out of control. See the thing was , being diagnosed happened in the middle of the day, while having the ultrasound of my son at 32 weeks. Something was going on with his heart, his heart rate was plummeting. Turns out, my body was trying to kill him. Lupus does that. So, they had to rush to get him out of my body. Bam. I was a mom. 8 weeks before I was supposed to be. Bam. Your baby has this heart condition that’s permanent. And YOUR body did this to him. BAM. HE MAY DIE. Double whammy . Triple whammy. Your body goes into some kind of terrible spiral of hormone induced hell of a lupus flare . I was 19 years old. So this was my introduction to being diagnosed to lupus. Trying to survive the very start of it. Almost being relieved that I Hadn’t been crazy for all those 5 years my body had been so sick before. Guilt that I had made my baby sick. FEAR. Mind-numbing, body-wrenching fear. Life is never going to be normal again. So what does all this have to do with writing? Well, when you have no one in your life around you who has EVER experienced anything remotely close to that, who do you talk to? What do you do with all that bottled up, pent up , crazed , what IS THIS STUFF I’m feeling?!? You write. And write. Until all the fear, and horror, and pain, is left bleeding on the page. Even if no one else ever sees it, it has left it’s stains on the paper instead of on your life, and hurts maybe, just maybe a tiny bit less. So if you have lupus, or depression, or arthritis, or just don’t know what to do with your thoughts sometimes, write. Because there is no “write” or wrong way, to do it. Write, until they no longer fill your mind. Fill the page with all that burns, and then let it go.
P.S. Here is a poem I wrote recently in one of those burning moments. Hope you like it.
I don’t know why my husband still hangs out with me. I really don’t. I swear I AM trying to grow up. I AM. But , you know that filter that most people are born with? That one between their brain and their mouth? It keeps what you are thinking from just flying right out the front of your face? I DO NOT have that. 🙂
My husband took me out for Mother’s Day last weekend. One of the few days I actually felt like going anywhere. It was a really beautiful day, and we decided to go for a drive up around a scenic area we’d been to before. He took me to a little flea market type thing and bought me a Wedgwood vase, really awesome. So great day right? Heh. Enter ……..THE PAWN SHOP. My husband likes pawn shops. I like pawn shops. Great idea , you’d think. Jewelry. Trinkets. Guns. We’re just strollin’ around. Hubs goes down right-hand side aisle, I go down center. I’m looking at the really cool stuff on the bottom shelf. He’s admiring the vintage rifles on the right hand wall. All is well. Until………I look up. And from behind the counter, there is…….a pirate. With an eye -patch. And a vest. Sighting down a gun. And from out of my mouth flies the words……”Oh my GOSH, there’s a pirate in the pawn shop!!” Now I immediately clap my hand over my mouth and think , “Why did I SAY THAT?!?” The man is probably a war veteran! And I can practically hear my husband’s brain turning from over across the store, “I don’t know her. I swear I don’t know her.” But , it just totally took me by surprise , you know? The man had a vest, AND a gun, AND an eye patch! Now in my defense I DID apologize. A man in the other aisle did laugh. AND ,my husband said if I hadn’t of been so embarrassed I’d have heard the other man behind the counter say , “Watch out. He might show you his sword.” OMG.
Oh, well. Like my sister said , “Don’t feel bad. Just think how many people probably wanted to say that and didn’t.” or as my husband said, “It’s never boring around you, that’s for sure.” Maybe that’s why he still hangs out with me.