He’s 12 , soon to be 13 in just a matter of weeks . He rolls sleepily out of the bed on this Saturday morning still bleary-eyed. His wild, dark ,tangled Irish curls twisted this way and that. He drags his comforter from the bed and pulls himself , blanket , body and all, onto me on the oversized sofa. He’s taller than me now, but doesn’t realize. He smells of sleep and the puppy who warms his feet at night. The cartoons are playing on the television but he’s not watching them, he’s closed his eyes again, as I make tiny circles on his back like I did when he was just a toddler. I close my eyes too, and wonder. Will this be the last Saturday I snuggle with my wild Irish boy? Will Saturday next he suddenly be grown and decide that oversized sofas , and moms and the smell of mornings are just “not cool”? Oh , how I hang on to this moment! But there is no freezing it. The smell vanishes when he decides that his still growing body needs its morning Cheerios. I feel disoriented for a few brief seconds when he stands , the transformation from the toddler in my mind to the half grown man child going to the kitchen. I realize that in just a few more brief seconds , he will be on his own sofa , with his own wild Irish child, enjoying the smell of his own morning.
Okay, big breath before this post. I always say that when I know in my brain that the things I am about to say are liable to offend someone somewhere in the cyberverse. But I have never shied away from telling how I really feel, (just ask those of my family or my true friends 🙂 It’s not really a bone to pick , or a soap box issue , it’s just something I want to bring up. See, I run a lupus page on FaceBook. I will have been running it for a year in November. Yay , me , right. Well, I guess. I mean , I’m not tooting my own horn , like Johan on that ridiculous coffee commercial. But I follow a lot of other lupus pages as well and have made a lot of friends from all over the world and it’s great fun. These are all positives. But I want to say something else too. For those who read my page, they see that I post positive and funny pictures . My goal is to get people to laugh and maybe forget for one minute that lupus is part of their life ALWAYS. But let me back up a minute, Don’t be fooled. Don’t mistake what you see for what is REALLY happening in my life, okay? I am 34 soon to be 35. I’ve had lupus for what they think is nearly 20 years diagnosed for almost 16. It attacked my heart causing congestive heart failure. I only have 30% function of it. It attacked my joints where every morning it’s agony to roll out of bed. It’s attacked my nervous system and brain causing something called dysautonomia where your nervous controls are fried , and you have no control over your heart rate or brain activity , so that without medication my resting heart rate might be 155, and I could have a seizure or some other event. I suffer from fatigue so severe that walking from the sofa to the bathroom can cause me to feel like passing out. I can’t drive, cook, clean or shop. Am I telling you this because I want a pity party ? Do I want you to come crawling out of the wood work with comments saying “You brave soul!” NO!! The exact opposite. I didn’t DO anything to deserve this. I got a lousy genetic deck of cards. But it ISN’t ANYone’s fault. And I refuse to give into pity! People have accused me of being in denial, “You should be angry!” Why? At who? It’s life. People suffer horrible things everyday. Why should I say , “Why me?” Shouldn’t the question be, “Why NOT me?” AM I EXEMPT somehow from human suffering? And tell me something else , Does being angry help? Does taking my emotions out on those who care about me, the doctors, hospital personnel or even complete strangers on the street, help me in any way? Will it help cure my lupus? Will it bring a spark of joy anywhere in this already VERY dark world? No,I’m not being a PollyAnna , and I have days where I cry my eyes out too. But , it doesn’t consume me. On the days it seems too much , I just remind myself, it came to pass, it didn’t come to stay, and take it one second, not even one minute at a time. I SMILE. Ask about someone elses’ problems, you might be surprised and humbled, and find out , yours might not seem so bad after all.
Do you have junk in your life? Chances are you do. Maybe it’s not even the kind of junk you think I mean. The world’s a junked up place. We fill it up with more of it every day. And it STILL might not even be the kind you think I mean. People are junky. They say junky things to one another. “Hey , you’re fat.” “You don’t belong in MY world.” We junk our homes with things that don’t really improve our lives. Do we NEED that extra fourth television? We junk our bodies up with WAAAAAAYYYYY too much food. We can’t have one piece of pie, we gotta have the whole dadgum pie. We allow our own minds to junk pile negative thoughts until we are under a giant garbage pile of thing we’ve told ourselves . “You’ll never get any better from this disease. You’re stuck here. Junk . ” I had a period in my life where for the sake of my own health I had to limit my contact with certain people because they could only have junky thoughts and reactions. Every time I left from visiting with them, my own garbage pile seemed that much heavier. It truly wasn’t healthy for me. That might seem selfish, and maybe in a way it is. But junk is just something I’m not willing to risk my life for. I’m not going to add anymore to my life, or to anyone else’s . Maybe it’s something everyone ought to think about. Junk. What kind have you got, and why have you still got it? Junk. What kind are you unloading on someone else ?
Have you ever been addicted to something , or worried that you were? I have a problem. I’m an addict. I need a 12 step program I think. But I don’t know if they have them for my sort of trouble. See, I’m a bibliophile. A book addict. I love them. The smell of them. The feel of them. The paper. The weight of the thick spines in my hands. I don’t remember a time when I wasn’t able to read, my parents say , I was 3 or 4 years old, when I learned how to read and written material has always been like a comfort to me . Magazines, newspapers, and of course books. Paperback, fiction, non, science, history, fantasy, old, new, the thicker the better. Piles and piles of them. I read everywhere I go, heck, sit me at the breakfast table, and I HAVE to read the cereal box. Road signs, manuals, travel and real estate booklets. Words give me something I’ve never been able to find in any other medium. When I’ve been ill, my stack of books at the end of my bed or sofa has provided me with an escape from the horrible places lupus has taken me. My husband tells people when they come to visit, “Just move my wife’s library over and find you a place to sit.” So what do you think? Have I gone too far down the path of no return? Will my addiction to the written word lead to my down fall ? I can only say that if it does, it is down Lewis Carroll’s rabbit hole, and I shall meet Alice and her friends there.
Legend tells that Ernest Hemingway was once asked to write an entire story in one sentence. His reply: For sale,baby shoes, never worn.
What a poignant story told in only one line. I think as a writer sometimes I get caught up in the story , and we all know as bloggers we can’t or DON’T just write one line posts. We LIVE for Books A Million where we can stroll aisle after aisle of 4 and 5 hundred page tomes of fantasy, sci fi, history and the like . But it got me to thinking could I tell a story in one line? And it also made me think of epitaphs. Darrell Scott’s haunting song from television’s Justified was taken from a hillside gravestone, “You will never leave Harlan alive.” I’m going to post the video for that with this post. Of course there’s the funny one every one has seen “I told you I was sick! ” I guess it just goes to show maybe sometimes we DON’T have to go on and on , and maybe short really is sweet.
Okay , those of you know I posted several months ago I posted the Mark Twain letter where he writes to the snake oil salesman who claimed to be able to “CURE” diptheria which tragically took the life of Twain’s son. He is such a great satirist, and today I found out that my sister suffered a completely unwarranted attack on some personal things that she can’t change, and therefore thought, I SHALL write a satirical letter to said unknown person. IT FOLLOWS.
Dear Person it may concern,
It has come to my attention that while conversing with my sister you felt compelled to make certain remarks about her appearance. This brings me to write this letter. Now I assume you ARE a real person, as my sister WAS speaking to you. You go about in broad daylight and are not therefore some type of vampire or other unworldly creature. And I MUST assume you have a brain , you spoke and didn’t shuffle haphazardly zombie like to bring out Daryl Dixon with his cross bow. And yet I am confused? You said my sister looked old! She’s a certain age , I won’t say what , as it’s no one’s business, but old compared to what? You said she looked tired! She has two sons, keeps an immaculate home, I daresay I could eat off of her bathroom floor, and not have the slightest fear! She has diabetes, 2 sisters with diseases killing them off slowly to whom she shows great compassion. So should she be jolly and gay? You even , I shudder to even mention this last one, for if you know , truly KNOW my sister, you would NEVER had said such a thing, said “She put on WEIGHT.” I perish, I faint, I revolt at the idea that you should be so cold. So you must surely be as Dorothy’s Scarecrow. Full of straw. Are you the ideal ? Are you young , vibrant , in your prime and perfect? Perhaps we should look deeper , for I am beginning to think there is nothing there in the middle at all, and you are more as the TIN MAN. “Oh, if I only had a HEART!” But let me reassure you ! There is hope! I shall pray for you. I shall pray you never feel the sting of a horrible comment such as those, and pray that people have compassion on your mean little soul. And I shall pray that you NEVER say such things to my sister again. As Twain would say Adieu! Adieu ! Adieu!