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

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

Are the Odds Even, or the Even Odds?

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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.

Military, Poetry, Uncategorized, world affairs, Writing

Do You See?

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He sees. 

The masses of humanity  who pass him by ( if you can even call them that.) For where IS their humanity ?

Webster’s , that great tome of definitions, tells us ; HUMANITY ~compassionbrotherly lovefraternityfellow feelingphilanthropy, humaneness, kindnessconsiderationunderstandingsympathy, tolerance …………

Perched on a milk crate , in mis-matched shoes, soles worn down to paper thin.

The little dog,  eyes shining bright , with the reflection that , he and the man are a tribe all their own.

The man’s grayed hair , and face lined  with a hundred, no maybe even a thousand memories .

Perhaps even memories he would wish to forget , of places far away, jungles hot and fetid.

The chopping sounds of helos flying over, and wondering if there is an end to this madness.

He sees.

That the people passing by have forgotten about those days, easier for them to pretend it never happened.

And so to pretend that he does not exist either.

But , he sees. 

And wrapped in an honor that only a few will know, that even fewer CAN know.

The creases in his face , would tell you the story, if  only YOU could see.

About Me~, humor, Uncategorized, Writing

When I Was Four~

*When I was four*

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Being four is not fair.Not fair at all.  I don’t belong in this dress.

Stupid lacy hat . Choking me with it’s girliness.
And a purse?
I can’t put my baseball and dead bugs in this.
I need my rolled-up Levi’s and Chucks.

Or better still bare-footed
I want so badly to pull away from this picture,
because it isn’t showing me.
I don’t want to look at it now, five years from now , or even ten years from now,
because all I see in this moment , and will see later, is a stranger standing there.
I see my best boy friends, John, Adam and Matt standing across the street.

My Three Amigos, or perhaps in this situation, the Three Stooges …….
They are  laughing at me, and doing their  best imitations of a ballerinas,
just to mock me.
They’ll see. 
This pink dress won’t keep me from blacking their eyes, and dealing out a bloody nose or two.
It’s not fair. I don’t belong in this dress.

About Me~, art, Uncategorized, Writing

Komorebi~

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Komorebi~木漏れ日

Early a.m, and the magic will start  , ever so slightly at first.

That certain gold that drips from God’s never-ending palette.

Down from the tops of the elms, and oaks,

it comes,  unaware of its own spectacular beauty.

Diamonds lit from within , dappled light transformed.

Glittering down , in a never-ending spectacular kaleidoscope ,

infinite in its choices of fractals.

I am struck by the feeling  that the golden drops have their own secrets,

and whisper them only to the leaves, who raise their veined bodies to hear it all.

Devotees’ to the words the sunlight speaks.

Never spoken to outsiders,

but passed from one to another ,

on the sacred parchment of their own greenery.

Komorebi , 木漏れ日,

 

 

 

 

 

 

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

How Bizarre~

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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. “