Scrambled~

 

Ferris wheels. I used to really , really love Ferris wheels. And roller coasters. I loved the up and down craziness of riding The Scrambler. The Flying Swings. Amusement parks were a ball, and I couldn’t wait to go every year with my Daddy to the company picnic to the big park and ride with him . I went with my friend James and tried to get him to go on the double looped Arkansas Twister with me, but he just stood on the ground firmly  in his wore out cowboy boots and swore that ‘s where he’d stay with his eyes closed , and pray until I was back on the ground  where I belonged .  I used to love to go to Hot Springs , Arkansas and ride the elevator up  Mountain Tower and stand 216 feet above the Ouachitas and look out over the heights and feel thrilled.

But then one day, I got very  sick. I had been pregnant, and I lost the baby . We found out it was because I had lupus .  My body turned into this alien thing that I didn’t recognize. It BECAME a Ferris wheel I couldn’t get off of. Around and around I went. I was on The Scrambler, screaming for the operator to let me off. I’m on the Arkansas Twister , but I’m stuck in between the loops, where there’s no solid ground for me to get back to. I know James is praying for me  somewhere, but I can’t get down again. The elevator refuses to take me off the Tower anymore. It’s been a long time since this horror park first started . I had a few years where I was lucky , and had a period of remission. Those were glorious times.

But the roller coaster has started back up again . I’ve had to go back on the steroids , the anti malarials, the high level Vitamin D, the major pain killers , and spent most of this week in either a state of insane insomnia, crazy fatigue, with my mouth covered in burn-like ulcers, my stomach in  toe-nail churning nausea, or  my body bent over in mind-blowing joint pain .

I no longer go to the “real” amusement park. I don’t find anything amusing in that anymore. My body is “Scrambled” enough. I am starting up the Mountain again, with a new rheumatologist. The one plus is , I really like this one, she seems to be really educated, and very compassionate. I can only pray that the view from the top of the Tower is worth this particular  ride in the elevator .

Discarded Treasures ~

I approached quietly , and left

a small piece of my heart,

on the  park  bench.

As if somehow leaving it there,

meant I was waiting for the day , no , not even the day,

my life!

to start,

for some permission.

Would he see it?

Would he care?

Or would it simply be one more

discarded, tumbled, forgotten grubby lost unknown treasure. I watch with all the hopes , despairs, confusions, joys, consternation…………. Abruptly  , the man who lives in the apartment above me  grabs my arm , and with  sudden fervor

pulls me down from my window perch , where I watch so anxiously . Racing , with a strength I would not , no , could not have thought his own bird-like body could possess,  hurriedly we go, skipping first one step , and then two steps at a time ………..and then we are there.

The bench.

The boy.

And me, the  girl. I am standing , out of breath, trying to think of the words to explain .

The painted rock.

The old man.

I am only a child  here.

My words are jumbled.

There is  nothing  for me to  say, it is  just a grubby , lost unknown treasure, I mumble.

It is okay, the boy  says. The old man is his uncle. The boy  is NOT new here, the old man says,  he has  seen that you like books, and walks. And benches. And wanting  to learn about quiet things, like that which is  discarded, and hopes, and unknown treasures. And  in time, together , you   will  think of the right words to explain.

One for Our Column~

 

Yesterday was such a lovely day . I woke early and the world woke  with me , with  all the hints  that everything good might happen. My body even tempted me with promises of less joint pain, and energy enough to take a small walk down our lane into the sun-tinged air. The wee red fox who calls our farm home greeted me shyly on my way back as if to say, “Happy to see you out today! ” The birds went about their daylight  business looking for their breakfasts and for one golden moment I had a dawn  that reminded me of what my life had been like so many years ago. I did laundry, straightened my kitchen, and walked barefoot through my tomato patch as I had  done so many times as a tomboyish 10 year old , and my Grandpa was one row over again urging me , “Make sure you get them tommytoes off the bottom vines  there, PeeWee!” . I wish I could have captured that moment in  a mason jar, as we used to do the fireflies , to open today , for sometime in the middle of the night ; the tordol, dexemethesone combo wore off, and the lupus pain came rushing back in , with all the fury of a caged beast  , seemingly  all the more angry for having been denied its one day. I want to say I’d never had that one moment , that one day, but if I did  I’d be lying. If we are all honest with ourselves, we would trade a hundred days , a thousand days , and we HAVE traded them, to get that ONE . That ONE magical day that brings back those gilt-lit days of joy, laughter, memories, barefoot -garden days, sun-warmed beach days, child-filled swing -in-the-park -days, those days where we shake our fists at lupus, at chemo, at whatever has stolen our glitter from our lives, and say , “YOU DIDN’T GET THIS ONE!! THIS ONE BELONGED TO ME!!”  , just so we can  put a chalk-mark in OUR column , no matter how small, and continue on.

Wings~

 

Happiest of Tuesdays to you EveryBUDDY! I hope today finds you doing the best you can with what you have. Sometimes that’s all we can do. The best that we can. Sometimes not even that. Sometimes we can’t even give it our all. There are days we can only give it our “some”. And the perfectionist in me is learning to be okay with that. I am very blessed in that I married a man who is perfectly okay if the house is not spotless every day. I do NOT have to look like a supermodel when I roll out of the bed in the mornings. ( Thank the Good Lord above. ) He met me when I was already very ill , and married me anyway. Needless to say it pretty much all went downhill from there. If angels walk among us, I’m pretty sure he hides his under his grease stained overalls. I read  very frequently a question that gets asked on my lupus page, from many of my followers, who are just beginning their journeys with this insidious disease, the question I most dread hearing. “Does it get better?” They can usually mean a few things by this. Sometimes they mean the treatment they receive from friends and family members. As in , “Does the treatment from them get better? Will they understand? Will they be more compassionate and helpful?” I wish I could say yes. But mostly , sadly, the answer is “No.” People , in large part, don’t “Get it” unless they GET IT , and that is something we don’t really wish on anyone. Sometimes they mean , “Will my illness get better?” And the answer to that is a resounding “No. ” as well. Oh how I wish I could say, “Oh yes! The doctors are so helpful. The treatments are wonderful. And the support is great. You’ll be back to yourself in no time. ” But it’s just not true. The best I can wish for them is a period of “remission” a short respite of ease . Now for those of you reading this thinking, “Well aren’t you being a Debbie Downer today??” I don’t mean it to be! I really mean it to be positive, so that when you see someone WITH a disease like we have , you will TRULY understand how HARD we fight to STAY positive. We must make up our own minds EVERY SINGLE DAY that we are going to live to see above the trees.  EVERY minute to smile through horrible pain. Our bodies literally hate us. And no amount of King’s Men can put our Humpty Dumpty’s back together again. So we must make the best go of it that we can, and oil our flying machines.  If we seem triumphant over some small thing, please remember that maybe even walking down the hall to our bedroom was like a 10K . Standing long enough to cook spaghetti was like a marathon. Taking one of our meds off our list , is relative to soaring over  Everest. These are the measures we count our lives by. So please. Don’t take offense if we don’t seem like “our old selves”. It’s been a long , long time since some of us even remember what that was like. Smile with us in the now. You don’t have to “HAVE IT ” to “GET IT”   🙂  Our bodies might seem to  be falling apart, but our spirits are still the same on the inside.  The wings might be bent, but not broken, at least, not for long. Come fly with us.

What’s It Really Worth?

 

A million dollars. Say someone walks up to you and just gives you a million dollars . No strings attached. They don’t want anything from you, you don’t have to do anything for it, they don’t need anything from you, they just walk up to you , hand it to you , and walk away. What would you buy? Do you immediately know? Do you have a list? It’s funny isn’t it? Suddenly you have all this money , it’s yours just to blow ! I’ve had this very scenario in my head a dozen times. And you know what? I can’t think of a SINGLE thing I’d rush out and buy. Not one.It just suddenly doesn’t seem all that important anymore.  My home is paid for. It might not be what anyone else would call a mansion , but I’ve never cared about that. The land it sits on belonged to my Pappaw , who thought it the most beautiful spot of land in the world, so beautiful that he died here, which makes it worth more than money to me.  My van is paid for. It’s not new, but it goes up and down the road. That’s what cars are supposed to do , right? Take you up and down the highway? I’ve got clothes to keep me warm, clothes to keep me cool , blankets to cover up the beds, food in the icebox, a couple of old dogs to bark if company comes. My Momma and Daddy are still living, right next door.Some things money just can’t buy. There’s no price tag you can attach. To happiness. To the people you find it with. Or the memories you made with them.  I find it funny sometimes to see all those people in the magazines and on the television shows talking about how their houses cost more money than most of us will ever see in our lifetimes. More money than our entire state budgets even. Then you read that they get divorced, remarried,  and all the unhappiness that follows them. You wonder if maybe they wouldn’t be a little better to follow the advice of John Anderson in that old song “Black Sheep”.

My daddy was a brakeman on a highball traveling train
Mama she raised four little children and the family had a good name
And papa and mama wanted all for us they never had
Big brother little brother sister too none of them turned out half bad
‘Cept me I’m the black sheep of the family

Big brother went to college and became a doctor man
I guess he makes about a million dollars a year off the folks on insurance plans
He’s got a big long Mercedes Benz and a house overlooking the town
He sits in his Jacuzzi and he watches the sun go down
And he feels real sorry for me, I’m the black sheep of the family

Yeah I drive me a big ol’ semi truck I’m makin’ payments on a two room shack
My wife she waits on tables and at night she rubs my back
And I tell her what my papa said to my mama when he got off the highball train
Wake me up early be good to my dogs and teach my children to pray

Little sister married a banker yeah he owns a country club
He bought her a big ol’ racing horse and a funky lookin’ little dog
He buys her big rings and diamonds and a brand new Japanese yacht
Yeah, they like to get together and talk about all the things they’ve got
But they never mention me, naw,  I’m the black sheep of the family

Yeah, I drive me a big ol’ semi truck I’m makin’ payments on a two room shack

My wife she waits on tables and at night she rubs my back

And I tell her what my papa said to my mama when he got off the highball train,

Wake me up early be good to my dogs, and teach my children to pray.

I beg ya woman, wake me up early , be good to my dogs, and teach my children to pray.

 

Seems like maybe we could all do worse than to live our lives a little more like that.

Blah, Blah, Blah, Blah, Blah………

 

Ha! You know those Charlie Brown voices that the adults make? For some very random reason I suddenly just thought of that. Pardon me , while my brain has some sort of extreme rollercoaster moment apparently. Heh. I do that. And I normally just spit out what I’m thinking  too. Which is sometimes funny, and occasionally horrifying, depending on where and when you are. Say if you’re in your neurologist’s office, you can cause people to move several seats down from you. Bwahaha. Oh STAHHHP. I ‘m not in the neuro’s NOW!! I’m at home. I’ve had a really kind of weird week . Well, I don’t know if it’s actually all that out of the norm for me, or if I’ve just noticed it more that the children are gone for camp. I got out of the house ( that sounded like someone holds me prisoner…….help!)    🙂     meaning, I had enough oomph to take some small walks up the lane by the house for exercise , which felt fantastic! Early enough in the morning where the heat didn’t drop me dead. Which was also great. Boys weren’t home so no loads of dirty dishes or clothes . Also big wins in the plus columns! Didn’t have to cook so hubs took me out . Even went to a new restaurant at the lake with an awesome  view where we’d never been! So of course, me feeling cheeky , what did I do, I overdid. I did, I went and overdid, and for my efforts ended up with a fantastically lovely aural migraine last night. Oh yeah. The flashing lights, the nausea, blind in one eye, near seizure level.  But do you want to know what I meant when I said I had kind of weird week? I could feel it working up to it. That’s the bizarre part. You know the poem I wrote for my blog yesterday? Anytime I am about to have a seizure, or any type of big neurological event, I can write poetry, I can write on my blog, I can paint, I can draw, be creative for a certain period of time. And then afterwards I’ll be exhausted. You can feel it coming,  and there’s nothing you can do to stop it, and of course it’s worse since the stroke so  I’m taking all the meds the doctors say to take.  I suppose there’s nothing left to do for it. Anywho. Feeling very tired today after all that . Slept for about four hours total yesterday. Completely wiped now. Just wanted to check in with all my peeps. This was really too long to write on my lupus page so wanted to post it here for everyone. Oh, and if no one has said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ RUBY J.

A Bible, a Bogg, and a Blessing ~

 

It’s been a crazy couple of weeks here the last couple of weeks, at our house. We’ve been getting ready for “Bogg Week”. For those of you scratching your heads just now, that’s Arkansas Southern Baptist speak for Bogg Springs Baptist camp week. A whole week of craziness that requires packing enough clothes for two teenagers that seemingly turns into enough clothes for an army. Yet somehow they return home with clothes for not even ONE child. They go clean , excited, and revved. They decamp; dirty, tired, but spiritually revived, and having made new friends. I know a lot of people think how great it is to have their kids gone from their house . Well, let me tell you. I am NOT one of them. I enjoy their noise, I enjoy the energy that their big growing teenage bodies fill our house with. I do NOT enjoy knowing that they are not here down the hall in their room; THAT  is a very empty feeling indeed. So my bedside Bible has been a particular comfort these last couple of days. As they are 15 and 17 , I know soon enough they will make career choices that will take them far away from me. I WILL be happy, I SWEAR!! 🙂 I will be proud! It will mean I have done what I set out to do , those very short years ago, to send them out clean, excited , and revved. And to let them know , it’s always okay, to come home and decamp; dirty, tired, so that you can spiritually revive. Home should always be like that . It is your greatest blessing. I know mine still is. Today , finding myself in need of a little bit of that refreshment myself, I hied myself up the hill to the shade of the old oak  and rocked with my Daddy awhile. So whether it’s the Bible, the Bogg, the old oak, or wherever you find yourself today, don’t forget you CAN still  find your refreshment in God today.

Where Ya’ll From ?

I just got reminded of something recently . Haven’t thought about it in a while , but some things that got said on the wild and wacky world of FaceBook made me recall it.  Apparently, I have an accent. A Southern one. HA! 🙂 The conversation had started over one of those quizzes that people take on FB. You know the ones I mean; Which color are you?  Can we guess your home state? What magical creature are you? and on it goes.  Well, they had this quiz on there , “Can you translate these southern sayings?” .  So. I’m just going to come right out and say it. I don’t know what people they were talking to but it was NOT anybody from anywhere near the South. I seriously had NEVER heard any of the things they had listed , and don’t know of anyone who has. So in the interest of telling it like it is, let me share with you some true deep South sayin’s.

1. More nervous than a long-tailed cat in a room full of rockin’ chairs.

(You’re pretty nervous.)

2. That fence\house\wall is cattywhomped.

(It’s crooked. )

3. Those two just do not geehaw with one another.

(When a team of animals are taught to pull gee is the command to go left and haw the command to go right, they have to work together to accomplish their task, so this saying means ”They don’t get along.”)

4. Ugly as homemade soap.

(You’re in a bad way ugly)

Somebody whooped you with an ugly stick. ( Same thing)

5. I’m feelin’ so poorly, I’d have to get better to die.

(You’re pretty sick.)

6. His bread’s in the oven , but the gas ain’t on.

Dumber than a bag of hammers.

(Both ways of saying of saying someone is very dumb.)

7. Drunker than Cooter Brown.

(Although I have heard this expression from lots of people I never have learned who Cooter was or why he was so drunk.)

8. Don’t mollycoddle that kid.

(You’re spoiling them, and letting them get away with way too much.)

9, The Good Lord willin’ and the creek don’t rise.

(Meaning , if it’s supposed to happen it will.)

10. You’re payin’ for your raisin’.

( Your child is just like you, and now you are regretting being such a brat to your parents. )

And so on it goes.  So there’s a taste of something real.  I mean , after all , real Southern accents are made by sweet tea sippin’ , front porch sittin’, magnolia bloomin’, swingin’ slow, muggy hot summers.  I suppose maybe those quiz people were just doing the best they could , “Bless their little ole hearts. ”    😀

Beautiful~

They lay in his lap at the end of the day, strong still , even after ten hours of working with hot metal, and heavy wood. The fine lines are stained indelibly now with the grease from the axles of the trailers he manufactures. Fine steel pieces of art to carry gleaming boats out into the water . His hands are fine pieces of art too. Muscles wrapped so tightly around the joints, joints so large that when he holds my hand, I feel like a tiny fairy princess. Hands that allow him to hold a hot piece of metal without flinching , and yet still hold a newborn baby as if it were a treasure untold. These gnarled , knitted sculptures have held back my hair while I was sick , caressed my face when I lay close to death in the hospital, cooked me meals, and bathed me when I was unable to bathe myself. I’ve seen those beautiful hands build a building from the ground to the roof, and at the end of the day , turn the pages on a thick cardboard book to read for the baby. One fish, two fish, red fish, blue fish. Perhaps they are not the manicured hands of a Wall Street economist, or a million dollar lawyer. The nails are thick and bent. But , I would not trade this pair of hands , or this man; for all the perfectly filed , and filled nails, carefully lotioned and trimmed hands in the world. They are his, and they are beautiful.

The Way It Was~

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.