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.
Invocation from The 13th Warrior~
Lo, there do I see my father,
Lo, there do I see my mother,
and my sisters, and my brothers.
Lo, there do I see the line of my people,
back to the beginning.
Lo, they do call to me.
They bid me take my place among them,
in the halls of Valhalla!
Where the brave may live forever.
I am so very tired. This is a beautiful prayer for the tired I think. I am not an expert on Norse or Viking history and do not claim to be. This prayer is from the movie the 13th Warrior so of course is probably fictional and not an accurate depiction of a Viking battle invocation. But it does hold strength for the battle weary I think. Lupus has greatly sucked my battle strength lately , I must say. The Vikings were great warriors , of that no one can argue, I think. They built their lives, culture , and even their idea of the after life about battle. To die in battle was their greatest idea of honor. So if that is true, then I shall certainly go to Valhalla. Perhaps I have not carried a heavy iron sword, but I have fought long. I have not worn a helmet of iron , but I have worn chains. I have bled, and sweat, and even been many times to the point of death and yet still I am here . The Vikings/Norse have an alphabet of their very own with symbols. One of them is a marking that stands for , Where there is a will, there is a way. What could be more true in this fight, than that?
~ Just wondering~
What happens in the tree!
I’ve had the strange sensation,
thoughts swirling in my head.
Like , “Where do fireflies go at dawn?”,
“Where do they go to bed?”
“What do owls dream about, “
“while sleeping in their tree?”
“Do they dream about their night flights”,
“and where the mice might be?”
“What fancies do the small bats see,”
“what memories do they keep?”
“I’d like to listen to their thoughts,”
“when they are fast asleep.:
Where might we all travel?
Which place would we be?
If we could know the night owl’s thoughts,
while dreaming in the tree.
Ruby Jeanette Woods
The news page is a scary place to have your home page these days. I am seriously thinking about changing my home page from Yahoo! News to something more positive. It is depressing to open your browser to some new act of terror or violence every day. I don’t watch the news on the telly or listen to talk radio for this very reason. Now don’t get me wrong, I’m not a stick my head in the sand kind of gal, it’s just that I don’t know that me knowing about all of that stuff helps in any way. I’m not in that city. I’m not there where I can do anything for those affected. I don’t mean that to sound calloused , either. But in today’s instamatic world, you are GOING to hear the news. I did hear about the Boston bombing. I am so sorry for those victims of that heartless act. I did and still am praying for all those involved. And now this Texas plant tragedy! It just becomes so overwhelming after a while, you know? When that’s ALL you hear you about , from EVERY source of media. Paper, digital, television, friends, FaceBook, your own inbox, it’s everywhere. I think sometimes we were better off 100 years ago when we didn’t have such “instant” coverage of everything. Think about it. There might be an earthquake across the world. We might not hear about it for a month or so, or even at all if no one we knew was affected, or was there to “cover” it. So we had one less thing to worry over. It just causes a kind of an overload after a point. And your brain just gets stuck in worry -town. Bombings. Terror attacks. Plane crashes. Explosions. Fires. Politics. Celebreties crashing their cars and their careers while on drugs. I get nostalgic for when I was growing up and we had 3 , count ‘em 3 television channels. You knew if something was huge cause then it was on EVERY channel. If it didn’t merit being on all 3, then you didn’t have to worry! Ahhh,those were the days!
(Today is Restful Wednesday! Or Nap Day. No dressing up, or application of make-up required. I have decided that on Wednesdays I am going to have a day just to rest. I will do my blog posting and FaceBook early if possible, and not worry about anything but rest, at least for Wednesdays. Because,I have decided that my health is like that L’Oreal commercial, it’s worth it! If you are tired, this is a public event, so get your favorite jammies and join in. Find your special spot on the sofa, and let’s just take care of ourselves for one day! )
Fatigue. It is probably THE hardest symptom of lupus to explain to people. Yes, I know , everyone gets tired. We’ve all had those days where we felt like we just couldn’t roll out of bed. And sure, we’ve all had those days where we COULD roll out of bed, and just didn’t WANT to…….:) But what my non-lupie (those without lupus) friends don’t “get” is that the fatigue of this disease is SO much more severe than anything they can imagine. I know that might sound harsh, and you can say I’m exaggerating if you want, or being dramatic, but it’s the truth. There’s nothing like it. The only way I know how to explain it to those who care enough to ask, is to say , Imagine the worst case of flu you ever had. Remember how tired having the flu makes you feel. How just making it from the bed to the sofa in the living room is so exhausting you think you might have to call the ambulance. Got that flu feeling/memory in your mind? Alright. Now. Imagine that it NEVER goes away. That every day when you wake up this is the first feeling to hit your body. That no matter how much you slept the night before , you are still NOT rested when you get up. But stuff still has to be done doesn’t it? Housework, taking the kids to their activities, being a functioning human being….etc…. When you have the flu , it just lasts maybe a week tops, and people understand. They’re sympathetic. “Oh, you poor baby. The flu is so awful!” But , when this becomes your life, people are a lot less understanding, let me tell you. They really start to get that whole, “Well, we’re ALL tired!” attitude with you. “Suck it up.” I’m not complaining, really. I know there are people who are never going to understand. These folks are never going to “get” it , so to speak. But, I just wanted to write, and let everyone know. The next time someone with lupus says , “I am exhausted!” or they make their joke / not a joke about needing a day just for naps, you might picture a flu day in your mind, and understand maybe a little bit better…. There’s also an awesome story in the lupus community called “The Spoon Theory” that I sometimes give people to read when they really WANT to understand…….it explains it so well, you can read it here……..http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
I’ve always loved to doodle, and I’m always looking for new and fun ways to express myself. I’m also kind of a Pinterest addict, so when I started seeing these doodle-type drawings there I couldn’t wait to find out more, and try it for myself. They call them Zentangles, or just tangles. They start off with just a doodle and kind of work their way out from there. Or you can draw a picture and use the tangles to “fill” the spaces of your drawing. There are tons of ways to do it, and it’s really relaxing. Some of them are really amazing, museum quality looking pieces. Of course, this one at the top of my post today is no where near that! But, hey it’s my first “tangle” , and I’m just getting started. I did find some books on Amazon about the “official” way to do these, apparently there is a copyrighted method, a website, tools, etc, with classes and everything, which of course they get paid to give, and the books are expensive. I’ve always kind of thought art should be fun, and available to everyone , so I looked on Amazon and found much less expensive downloadable books, and there is a neat website called http://tanglepatterns.com/ that shows you the way to do these also. I can’t wait to try some more patterns and see what other things I can doodle on ! If you’d like to give tangling a try , here is the website that I went to today http://tanglepatterns.com/ also here is the link on Amazon to one of the ebooks that I purchased as kind of a starter book with tangling patterns http://www.amazon.com/Fast-Freehand-Fills-Basic-ebook/dp/B00B09I8UE/ref=sr_1_25?ie=UTF8&qid=1366152277&sr=8-25&keywords=zentangles Plus , on Pinterest check out some of the amazing work that other artists have already done. Hope this gets you started to having fun with this neat idea!
Use what talent you possess: The woods would be very silent if no birds sang except those that sang the best. ~ Henry Van Dyke
I like to sing. I don’t know that I’m any good at it, but I enjoy it. I especially like turning the radio up loud when I’m in the car by myself, and just letting it all go. I know the people at stop lights probably wonder if I’m cleared to drive, but hey, life is too short to worry about what the person in the next car thinks, right? Music is good for the soul, they say, and I have found that to be true. When I don’t feel well, I love turning the music channel on the t.v. and listening to depressing songs. Sounds weird probably, but it helps me feel better. Hearing other people sing about how their life sucks just kind of makes you realize that maybe yours isn’t so bad. I had never seen the above quote before today. I think it’s great, though. I wish more people felt like that. When I was little my dad used to take me out in the woods a lot. I loved sitting with him and listening to all the sounds of the outdoors. I hadn’t really thought about what the forest would sound like if only the best birds sang. You don’t really imagine one bird saying to another, “Geez, Bill, you are SO off-key! What is with you?!? Thinking you can sing and crap? Get real!” No, I guess they are probably all just happy with what the Good Lord gave them, and just happy with the fact that they didn’t get eaten overnight or anything. If we were more grateful for the small things in life, we might have more to sing about……..Hmmmmm…..well, I didn’t get eaten overnight……believe I’ll sing!