After wrestling with the question for a long time, I have decided that for the next few weeks I am going to drastically limit my time on Facebook and other media. I don’t have enough spoons for everything I want to do. Facebook does take spoons from writing and writing needs to take precedence.
Additionally, with the immense emotional toll the battle over my records is taking, I am left bereft of energy and, occasionally, even the will to go on. This issue with the hospitals has me unbelievably low, and every time I turn around, they are ready with a new volley. Coincidentally (I’m sure) Risk Management called my doctor while I was there for a very early morning appointment. It took all I have to not just lose it then. Like I said, it was probably coincidence, but it felt (and feels) like I am being monitored. It is a very disturbing feeling. It also drains an already low reserve of energy to almost nothing. The continual worry of this situation is stressing me more than I thought.
I love my Facebook family, I enjoy the epic cute war, the plots of otters and sharing our lives. I just have to prioritize a little differently. While I used to be able to write, chat, post and play at the same time, I now can do just one thing at a time. As the months have worn on, and my cache of energy has been depleted—sometimes I imagine it’s like an aquifer slowly being drained without the “recharge” of rains it needs—I have played on social media, shared pictures and ignored the gnawing feeling of not writing. I need to switch it around.
Writing has to come first.
What does it all mean? I am not abandoning Facebook, Twitter, et at, forever. I am just restructuring my energy use. It is a difficult choice, but I have books that need to be written and they are not getting done. I have blogs, stories and other projects that are not getting done.
Please be patient with me as I work around this issue. I need time right now. While writing is one of the major factors—my health comes into play. Both in the energy I have, and in the healing I need to do. The night in August left a bigger hole in me than I thought. I realize somewhere that night, I lost hope. I think a part of me died, and I am looking to reclaim it. I know my trust (in medical care) was destroyed. The monster of the Three Little Words is haunting my steps day and night as new “solutions” are offered. Solutions that will not make it better.
And it scares me. I have always been able to write, and I hope focusing back on my writing completely, will let me save myself. I feel a little like a character in a show. It’s dark, there are monsters and sadly no 1939 Ford, 1967 Impala or sailing ship with a dragon companion are here to chase the monsters. I know they will be, I just need to find them again.
I think I had a heart attack last week. An actual heart attack, not the usual esophageal spasm—it felt different, it hurt different. I know I should have called 911. I had a friend who told me to call 911. That’s what you do, right? You call 911 and they help you, right?
Did I call?
I ground my teeth together and decided if I was going to die it would be at home with my cats.
So, I can hear the questions. Why? Do you have a death wish? Are you crazy? A masochist?
I was terrified as I fought for breath and the pain crept up my neck and into my jaw. I was crying in fear by the time the tingling in my hands started.
And I didn’t call.
I didn’t even call the nurse hotline, because I knew they would make me call 911, or in the face of my refusal, call the EMTs for me. Chest pain and heart attacks are not to be trifled with!
For most people, at least.
Sometimes there is a crime committed for which there is no punishment too terrible, an act so horrific that even those pledge to compassion shun and bully the perpetrator. A scarlet letter tattooed on the person, with no penance great enough to forgive the transgression. What could a person do for which there is no forgiveness, no recourse, no chance at retribution? What could be so horrible that you can never truly free yourself of the taint, even if you prostrate yourself before the world and shout mea culpa?
And, more to the point—what does this have to do with me (and my possible heart attack)?
Three words. Three little innocuous words, that when strung together mark a person a criminal so vile that they are never allowed to escape, never allowed to correct and never, ever allowed to forget. Three words that have changed my life forever. Three words that have led to adventures that are almost unbelievable. In fact, I wouldn’t believe most of them, had I not been there.
Welcome to the world of being branded with three little words “drug-seeking behavior”.
Some years ago, I went to the emergency room and a doctor ignored what was going on, instead deciding I was just an addict looking for a fix. He didn’t care if I was ill, he didn’t care if I had surgery several months later for the very thing that had sent me to the ER that night. Nope. I was just an addict—oh yeah, and even though he was wrong, even though the hospital sent me a nice “we’re sorry” letter, the damning words were left in my file. The doctor admitted it wasn’t true, the hospital said sorry, and it remained in my file. Unlike a friend who ended up in the hospital with pneumonia and they accidently put in his record he had a heart stint. He corrected them and poof out of his file it went.
But not those three words. They won’t remove them. They won’t correct them, and even “amendments” end up at the back of the file so doctors see the three words first.
More to the point that is all they see. Three words branded into my skin that allows them to ignore my pain, ignore my pleas and—one fine night in August—torture me for hours to break me and make me admit I was there for drugs. (See Friday Night I Screamed).
After that little mishap and the fight to have my feeding tube removed, I did what I had done before. I did what they said would help and filed a grievance. I spoke with patient advocates, doctors, nurses and clinic managers. I entered a letter from my doctor into my file that said they can call him anytime 24/7. I received a letter, a very long one this time, on heavy cream paper that said they were sorry. It was unfortunate. It wouldn’t happen again.
Only it has.
Remember the doctor who said I couldn’t have a knee replacement because I was too young? The Day (see The Day) I thought I had lost hope? I was wrong. There was further to fall and it was Dr. Surgeon who uttered the devastating words about a patient he had never met. The real reason for no surgery came out. Dr. Surgeon had noted in my file that surgery was inadvisable until patient overcame narcotics dependency. A man who had never met me. Someone who spent less than three minutes with me. Someone who had just condemned me to pain and disability and it was based on those Three Little Words.
Three Little Words that are not even true.
Three Little Words that have been refuted many times, three words that have led to a very thick file of those letters on heavy cream paper filled with—it turns out—meaningless apologies and promises to do better.
When Dr. Surgeon and I first met, I was left devastated. I also immediately called patient advocacy and filed a grievance. I thought the issue was my age. Okay, I know a college basketball player that had a total knee replacement at twenty-two—but he was an athlete. I guess I thought that made him a special case. Still, I went to hoop A and started the process. I spoke with several people. They were all kind and assured me it would be okay.
Then the Real Reason appeared. The Three Little Words. The crime that cannot be undone. My doctor—who knows me very well and has kindly made himself available 24/7 in case of an emergency—told me he was beginning to worry about the quality of the care I might receive because of those Three Little Words. I was horrified. He has never looked that bleak before. And it all suddenly hit me like the pain that had nearly driven me to the brink last week.
I immediately contacted patient advocacy. I have chased them for days. They told me they can’t remove it from my record because it isn’t tangible like the heart stint my friend didn’t actually have. They told me tangible things can affect the way you are treated in an ER. I guess torture, confinement and bullying don’t count for the Three Little Words. They are not magically tangible--but they are aren’t they? How many times have those Three Little Words pursued me through hell in an ER? How many times have I written of it—either here in this blog or in the pages of fanfiction, giving myself a resolution by helping characters escape from hell.
There is nothing left for me.
I will go through the motions. I will allow a tribunal to meet and make a decision about me. Doctors who have never met me who only have the cold words on a page will decide if there can be another AMENDMENT. No, they are not going to take OUT the Three Little Words. They will just have a tribunal (how very French Revolution kill the aristos of them) to decide if I can have an amendment to a statement that was a lie. A lie that now follows me, a lie carved into my body and a taint that nothing will cleanse.
It seems hopeless.
I don’t even want to fight anymore—what is it they say about the definition of insanity? Doing something over and over again expecting a different outcome?
Well, thank you Dr. Surgeon, thank you two emergency rooms, thank you doctors and nurses for your help.
I am not insane anymore. I don’t expect a different outcome. I know I will be demeaned, I know I will be left in the waiting room in excruciating pain while people with the sniffles get a treatment room. I know I will have to always have a friend with me, and always carry letters that say “call me 24/7” or “this is an amendment to the records”. I know now that no one will look.
There is no hope.
There is no justice for Three Little Words.
There is no relief from pain.
There is waiting in bed for the heart attack that is a heart attack, for the thing that kills me.
Thank you to all those people for helping me see the Three Little Words and what they actually mean. Thank you for helping me through the idea that there could be a different outcome. I know now—it’s simple really…
You do not deserve care, compassion or even respect. Please go away and die elsewhere.
Welcome to the world of the criminal that can never be redeemed. I have fallen from grace never to rise again.
Three Little Words—untrue words—have destroyed a life.
Multum in Parvo means much in little and it describes life so well. I have gastroparesis, esophageal spasm and other issues that offer challenges to my daily life. This is the blog of those days.