About Me~, art, chronic illness, humor, inspirational, Poetry, Uncategorized, Writing

The Things We Carry ~

c46151b65f6f35449f74dae25424f95d

 

We’ve all seen them.

There are all these quotes on FaceBook,

Pinterest,

Instagram,

and Twitter.

They seem so bold, inspiring, liberating……freeing.

Things like , “Leave the woman you were , in the past, because the future is bright. ”

And Lord knows, I’ve been guilty of sharing some of them.  They seem good.

But I was suddenly struck by a bolt from the blue , yesterday.

You see it was my 39th birthday .

15 years past the date when they said, I should not live.

And it dawned on me , as though the universe itself had spoken to me ,

in a moment so clear I could almost have sworn everyone around me had heard it.

Saying, “You do not have to leave the woman you were, in the past.

You do not have to leave the person you were as a child, as a teenager, or as a young adult.

We do not leave those people behind somewhere in the ether of the universe.

We carry them with us. Not as a weight, or a burden.  Not with hurt, or pain; but we carry them with us ,as knowledge.

Knowledge that lets us reach others. And wisdom to see that although there was hurt,

we grew tall and strong in spirit anyway.

We carry them as teachers, reminders that who we were then , is still valuable in the journeys we take today. We wear them as deeply as if they were  sewn on badges , celebrations  that we survived.

So I will not leave behind the child I was, the gangly teenager I grew into, or even the much -scarred woman I have become.

I will be all of those people , all at once; the child, the youngster, the woman.

And walk through this world with the quiet  knowledge

That in spite of it all,

I made it. 

Advertisements
About Me~, inspirational, Uncategorized, world affairs, Writing

It Wasn’t On the List ~

 

1613531-bigthumbnail

The sun is rising up over the trees of my hollow , painting the pines, the maples and the oaks with a magic that only God himself can bestow. The dark sentinels recognize that day is starting and gives way to the light.  It is quiet.  The kind of quiet that can only be found when we still ourselves.  No television. No cars.  Only the quiet of the reality that , no matter where we go, possessions don’t matter.  Outside in the forest packages tied up in bows , really have no value .

I’m sitting here in my little frame house, warmed by the fire ,of the wood -stacked by my husband (before he headed off to his job) , a handmade afghan on my feet ,  a tiny , furry dog making snuffling noises as she settles her way ever deeper into the cocoon she has made for herself.

It’s that time of the year again.  Where people seem to turn into frantic genetically engineered  gerbils stuck on a giant wheel that spins ever faster. I am often agog at the speed they are able to manage, and wait in a kind of  morbid fascination wondering if the wheel will fly off into some other galaxy at the current rate they are going. The stores are jammed packed with those who carry those sacred  lists ;   as though those pieces of paper somehow carry the keys to true happiness, or even the map to Ponce’ de’ Leon’ s fabled fountain.  Gripped so tightly , and conversing to some unseen person (  themselves?) , that I can’t help but ponder  if a trip to Bedlam might needs be in order.

I know they are doing their best , to make the ones who made those lists happy. That “perfect” gift . The end goal being , to see the lights in their eyes shine so brightly that all of the effort was worth it, thus granting them Le’ons  immortality. and that ever elusive JOY.  But…………….temporary.  Because those toys are  tossed aside by next month’s end, as the next “it” thing is discussed, in terms of  , “Well, NEXT year I am going to ask for ………………!” Bigger , better, more expensive. So back on the gerbil wheel the givers go.
Til suddenly their legs, finances, stresses, and sanity ;  give way, and the wheel comes to a grinding halt.  It is an unsustainable momentum……… the mythic fountain just out of reach.

For what has been obscured in the misty fog of store lights, faux snowdrifts, bedazzled costumes and the street hawkers is this :  immortality , the fountain of a memory of youth is not hidden in any of those things.  It’s hidden in the decisions you’ve made every day , of every season.  Summer; in laughing with those you love over some ridiculous joke . Fall; in feeling that full crisp air hit you while you walk down the street having a conversation that will never be remembered, but the moment will. Spring; in the first flower spotted by someone and you realize that Winter is truly over; and Winter ; all of Winter, when the weather forces you indoors to sit together talking about “Remember the time , we?”  and “I will never forget the day that we ……….”

Those are gifts. Not in department store boxes, not in bags, or in the ubiquitous gift cards of our era. THOSE. 

May we never become so jaded that we forget that THOSE are the  gifts worth remembering.

 

About Me~, chronic illness, humor, Uncategorized, Writing

“Anybody Know the Number for “911”?

“Why would you even say that?”

“I don’t find that funny. “

“You shouldn’t laugh about chronic illness.”

“If you do that , people won’t take our issues seriously.”

“You really offended me by making that comment. “

These are all things I have have said to me, by people WITH chronic illness and even people WITHOUT.  Apparently, if you suffer from a disease, you get your “humor card” taken from you , and it is now NOT okay for you to be a happy person, or find any kind of joy in life.

So , I’ll start this next paragraph by saying, lest you think I have no right to speak on this matter, that my diagnoses in order are, Systemic lupus , heart failure,  Sjogren’s, Raynaud’s, POTs, dysautonomia, and EDS. So trust me, I have been around the medical merry-go-round. I many times have  pain that would put most people on the floor, have had so many surgeries, that they don’t give me enough lines on the medical forms, and so many allergies that they no longer even put them on the ER bracelets. I just get a big red one, that says, “See List”.  I have been sick since I was about 7 ( I was so sickly that my Grandpa called me P. , short for PeeWee) , and VERY ILL since I was 14. I didn’t get diagnosed until I was 19, so I had five years of basically every doctor saying to my parents, “She’s just lazy. ” and “She’s just wanting attention. ” So you develop a thick skin, and I developed  a sense of humor from the craziness of it all.  Sort of like OR doctors, ER doctors, etc. That gallows  humor.  I CAN and DO find the funny in just about any situation.

I’ve learned over the years that there are two types of people, when they find this out about me. They either “totally” get it, and love that I make a joke of it, or they are so offended they can’t take it.

But my question to them has always been. “Well what SHOULD I do? Should I be this joyless, soulless person, who is angry about things I can’t change or control?  Should I rail against the Doctors, the nurses, the techs and even God?” If your answer is “Yes!”, then my reply would be, “And what would that help?”

Rather , isn’t it better to find joy where you can? To laugh over the quite frankly ridiculous things that become necessary when you’re stuck with a lifetime illness?  Isn’t it better to be positive?

I am sorry if you think it’s wrong somehow , that even though I have more issues than you can shake a stick at, that I am happy anyway.  I am sorry if you find it strange that I am able to laugh , not BECAUSE of how things are, but IN SPITE of them.  And to be quite frank, and  I am sorry that even though things are hard, that you have no way to smile.

But I am NOT sorry that I AM able to find joy. I will not  apologize for coping with the circus that is my life , with humor.  ( P.S. Below, find an attached article about the effects of gallows humor and how it helps us cope in stressful situations. ) https://meded.duke.edu/practice/wp-content/uploads/2014/07/Gallows-humor-in-medicine.pdf

505099020 (1)1200px-Brown_paper_bag_texture (1)

 

 

About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

Are the Odds Even, or the Even Odds?

23916765_2155308884494767_6896709139203961687_o

 

Pain is a funny thing. No, not funny “haha”, but  funny “intriguing” .  Pain is our body’s unconscious reflex to avoid something injurious, or to an injury or illness.  In theory, (  scientifically-speaking) it can only be felt in organisms with higher brain function. (Although how they would just that I don’t really know, might not WANT to know. )

Most people bless them, and their good fortune, have only known physical pain  from the standpoint of accident, injury, normal illness etc. They remember these things, but it isn’t an everpresent thought, or ongoing mental conversation they have to have.

But what would you do if you just woke up one day, and the pain never went away? EVER.  Some one once asked me what having my condition was like. I told them, “It’s like your body’s pain function is an old FM radio, with knobs that can be turned up or down. Most people , their knobs function like they should, being able to be set a certain way , pretty much most of the time. But my radio, the knobs are not only non-functional, they’ve been knocked off completely. So I have no way of even adjusting any of it.  It is set permanently at full volume. ” Yeah, fun times.

So pain HAS made me the “odd one out”. When you are 19 and are such an odd medical “rarity” that the doctors bring their students around to “observe” you.  When you are 21 and spending more time in hospitals , than your peers do in clubs.  When you are 25, and the doctor asks, “Where did you go to medical school ? “, (in all seriousness) , because you have more medical knowledge than his interns.

But it’s made me the odd one out in other ways as well. When you are 19, and can empathize with any elderly person, because you have so many medications.  When you are 21 and are able to help another person get a diagnosis, and help them realize, “I’m NOT crazy . This wasn’t all in my head!” , and when you are 25 and are able to educate others about many , many aspects of life-long illness.

You adjust. But you do NOT “get used to it”.  Trust me. Mind-numbing, bone -deep, “Oh  God kill me now.”, pain is NOT something anyone EVER gets used to.

So don’t be fooled by the smile you see  someone wearing. You have no idea what it is costing them.

About Me~, inspirational, Uncategorized, world affairs, Writing

Hillbillies, Happenings, and How are y’all?

 

 

14424721_1216518198420851_2592819625145033806_oSo , How are y’all ? or as some would say , How y’all are?  There have been quite a few interesting happenings  in my lovely home state  of Arkansas in just the last few days. Some private citizens paid to have a monument to those good list of rules that are just a pretty good idea for all people to follow, or you would think pretty much everybody would think they are good rules for everybody to follow. You know things like, “Don’t go knockin’ your neighbor over the head. ” and “How ’bout we don’t make off with things that don’t belong to us?” and here’s a pretty swell idea for the general population , “How’s about we don’t lie to each other , so as we can trust what we all say?”  and maybe , ” Let’s not go gettin’ naked with somebody else’s spouse?” that wouldn’t be an alright thing, now would it?. So anywho, they put these and few more like them on a big ole rock, and put them on the lawn of a building. Now the government didn’t pay for them, some regular people did. And they were no more out there a day , then what some feller decided he’d run them down with his car while shouting , “FREEEEEEDOOOOMMM!!!!!” Yes. This really happened.  And what’s more , apparently this individual had done this once before.

So this happens two days ago. Now TODAY,  in some club in the capitol city of my home state some people decided that they were offended by something someone said, or did, or just looked at them sideways, and 25 people were shot, and 3 other people were wounded. No one died. Which brings me to the point of my blog today. Which is……… WHEN people find out I am from Arkansas. Which is pretty much right  after I open my mouth. ‘Cause I guess, I have an accent. Who knew.

That’s right . Y’all go on ahead and laugh. Everybody else does. Other people have two reactions. They either think it is the sweetest thing ever, or the most ignorant . But it’s always the same. “Oh my goodness, that is just the sweetest thing! Where are you from?!?” or “Well, don’t you just sound stupid. You MUST be from the South.  ” Because apparently, being from the South, especially from Arkansas , and having my particular accent , makes you immediately some sort of inbred with the I. Q. of a turnip.  And these types of news stories are NOT helpful. So I am going to set the record straight, we have had loads of educated, brilliant , magnificent people hail from here, and  as a tiny tasting here is a small list……………..

Alan Ladd ~ Actor

E. Fay Jones  ~ Architect

Maya Angelou~ Poet

John Grisham ~ Author

Sam Walton ~ Founder of Wal-Mart

General Douglas MacArthur

Brigadier General Archibald Yell

Glen Campbell ~ Singer

Johnny Cash ~ Singer

Ne-Yo ~ Rapper

Hattie Caraway ~ 1st Woman U.S. Senator

Dick Covey~ Astronaut

Hangin’ Judge Isaac Parker

President Bill Clinton

Luther Capps

Okay, so you probably don’t know the last name on that list. But to me he was the most important. He’s the man in the picture above. He was my Grandpa. Now he didn’t go to some fancy dan college. And he had an accent too. But he was in my estimation one of the smartest men ever. He could grow anything. Fix anything. Build anything. He was born in 1913, and lived through the Dust Bowl, and the Great Depression. He picked cotton, lived in California and worked the orchards, rode the rails as a hobo, and did anything he had to do to survive. He had muscles like whipcord even in his 70s and could out work men half his age. He taught me to drive , barefooted in an old 1963 Ford Falcon pickup on a backroad with the windows down and the air so hot you felt you couldn’t even feel your lungs move anymore. He followed those rules that the crazy FREEDOM shouting man so callously ran over.

 

So I refuse to apologize. That man running down the 10 Commandments and the crazy nightclub shooters are not what the “average person ” is like here. The “average” person here is like my Grandpa , God rest him.  So, NO, I am not going to “flatten” my accent to make other people feel better about themselves, or to hide where I am from. I will straight up tell you, “Yes, I am from Arkansas. No, we are not ignorant hillbillies. I do not care that you think my accent is stupid. Yes, we talk slow. Maybe it’s so all of the REST of you people can understand , ’cause y’all are the ones a little bit ‘off’, did you ever think of that?”

I will leave you with the words of Ms. Maya Angelou herself ……..

My mother said I must always be intolerant of ignorance but understanding of illiteracy. That some people, unable to go to school, were more educated and more intelligent than college professors.

About Me~, art, inspirational, Uncategorized, world affairs, Writing

How Bizarre~

730094f67fc721a5b0dcc1e7bd60cf1b

The beautiful is always bizarre.  ~ Baudelaire 19657041_1349803748431210_6828812241786549423_n

I’ve never BEEN normal.   It was a certainty in my bones , a knowing even. An intrinsic feeling , yet not a difference that I felt was a problem. I didn’t SEE it as being a difficulty. I knew I was not like other people. I don’t say that as a form of braggadocio or as a way to say I was better or somehow on another plane. I came into this world , a wild animal. For most of my early years I refused to wear clothes, driving my mother to insanity. I thought going about skyclad was the best thing in the world.  When she DID manage to keep me clothed, it had to be boy’s clothes of the most ragged variety imaginable. Jeans, cutup, cutoff, dirty, t-shirts the greasier the better. My Dad’s castoff welding hats and goggles. A pair of corduroy Levi knickerbockers. Cowboy boots with the soles worn completely through. A set of leather chaps that a friend of mine had outworn. I spent my days out of doors ;climbing every tree within 10 miles of my house. Skinnydipping in the Little Missouri river until I was sunburnt to the color of red ripe watermelons we gommed from Granny Jo’s garden in the evenings.  I don’t know how my mother kept from killing me in those years; I never shut up, when I WAS home, which was seldom, I despised school work; what was I going to need all THAT useless information for anyhow, I wanted to be any and everywhere besides chained to that drudgery . I brought home any and every creature I could find , that slithered , crawled or flew, and was sure that both my mother and sister would find homes for them, and be just as fascinated as I was. (  I was wrong on both counts many times. ) Come to think of it, I don’t know why my SISTER didn’t kill me in all those years. I’m sure she had just cause. She was all the things I wasn’t . She was clean. She was a whiz at school, quite dedicated to it actually. And she actually kept her clothes ON. She swore on many an occasion, that “For the love of GOD, Nette, you are adopted. I swear. You actually belong to some nudists somewhere!!”  Heh.

I guess , to me, life just all seemed so bright, amazing, full of things to see. It still seems that way. Everywhere I go now, I still wonder why people want to be “normal” . And the funny thing is they struggle so hard to do this thing they call “fitting in”. What IS that, anyway? I had an interesting conversation with my niece, just the other day.  I was asking her , about a certain person , “Why is he dressing that way?” ( Meaning goth, emo, shopping at HotTopic, you know the whole ‘look’) She said , “Well, he’s making a statement I guess. Trying to stand out. ” So I asked her, “But if EVERYONE is doing that now, dying their hair, getting tattoos, going “goth” , and shopping at HotTopic, are you really making a statement? It’s not. It’s the new ‘normal’, isn’t it. ”  She didn’t really know what to say to that.  See, I don’t have a single tattoo. I don’t dye my hair technicolor. I’m not some trendy gender. Been married to the same guy for almost 21 years. I don’t have a nose ring, or some other odd piercing.  I think people ought to be respectful to others , and pretty  much live and let live. Wow.  In this day and age, guess what? I’ve become the new bizarre. And to quote Baudelaire, “It’s beautiful. “

art, inspirational, Uncategorized, world affairs, Writing

How Are You Today ? Just Four Words


7a8c93541978a60c82152ab76502a2e7




no estic bé
People are hungry. 
Níl mé ceart go leor
Children live on the street. 

Mir geht es nicht gut
The politicians play by their own rules. 
I au I Ka Moana
We've forgotten , "Do unto to others ."

אני לא בסדר
We turn a blind eye to those we could help

e kore au e ahau pai
The Golden Rule is not , "He who has the gold , makes the rules. "

Sina sawa
Love is not arrogant , or rude. 

P.S. The "four words" are , "I am not okay." in many different languages from around the world. 
 And he said unto them, Go ye into all the world, and preach the gospel to every creature. Mark 16 :15
Just something that was on my heart today.