Source: Reflecting on 2015
I love Jordan!!
I hate when people post endlessly about how tired they are, how sick they are, how this hurts, or that aches, or whatever… whine, whine, whine… But right now, right here, this is my rant.
First of all, most people I know don’t know I have Fibromyalgia. It’s not something I spread around, because a) So many people think it’s this made up thing. b) Sometimes I think it’s this made up thing. c) It scares me.
I know so many people who are struggling with Fibro and I fear my life will become small and medically-centered, Fibro-centered. I fear sympathy, tinged with disbelief. I fear lack of control. I have enough going on in my life right now, I don’t have TIME to be sick.
But lately, I’m more than just sick. I have back pain. I mean, serious, serious pain. I have some vertebrae degeneration, some small fracturing, some disk degeneration, some spinal cord pressure… all adding up to a serious level of discomfort. Like, life-altering discomfort. Like, I can’t get out of bed discomfort. Like, I can’t stand, sit or lie down for more than a few minutes in any one position discomfort. But I DO get out of bed. I DO stand all day at work. I DO sleep (medicated sleep, but sleep, nonetheless). But it’s draining. I’ve been in PT for a few months, with absolutely no improvement. I’m on a few different prescribed meds, having upgraded from supplements and alternative remedies. Most of those meds help elevate mood, help control pain and help improve sleep. But most of them also have “drowsiness” as a side effect.
Plus, I’ve been “actually” sick on and off for weeks. Many weeks. I got the Norovirus after the holidays, and I just haven’t come out on the other side. My doc says no wonder, with all the stress, pain and uncertainty in my life right now.
I am also very tired of winter. Today was gorgeous and I was too sick and tired to enjoy it much, although I did get out for a little while.
So, I’m tired.
I give up. I’m sick. I’m sick of positive thinking. I’m sick of the type of victim blaming that says what you think, you manifest. Screw it. I feel like crap. I will probably feel like crap tomorrow, too. Guess what? It is what it is. I will likely feel terrible for a while, considering.
So…. what’s next? I have some ideas, but the first one is this. I am going to stop fighting being sick.
I have looked and looked, and most advice on dealing with chronic illness includes the word “fight”. No one wants to be sick. No one wants to feel like they don’t have control over their health, their life.
I have “fought” for years and years, with some pretty decent level of success at times. But for the past several months, I have been losing, rather than gaining, ground. So… my new strategy is to just go with it. I learned a phrase this summer that I like: Acknowledge, Ignore, Move On. it’s a great strategy in sales, and in life, when you are moving right along. But sometimes, you just can’t ignore any more. Sometimes, you just have to accept.
I have been acting like I’m not sick for a long time. But the mask has slipped. The facade is damaged. So I am now I am working on “Acknowledge”. I’m tired. I’m tired because I’m sick. I’m tired because my back is a hot mess. I’m tired because the medication that does actually help (although not eliminate) my symptoms makes me tired. None of these things can be ignored. All must be accepted. I think it will take a while before I am there, before I can really accept. I mean, it’s been over a decade since I first found out I had Fibro, and I haven’t accepted it yet, after all.
But before acceptance comes acknowledgement. So this is me, acknowledging the fact that I am sick, I am in pain, and I am tired. And right now, that is enough.
As most of you know, Henning has spent the last three months in the states with me. As you also know, I was booted out of Denmark, so our situation has been complicated by not only health issues but logistical issues, as well.
I have been busy making a new life in NH, while Henning has been figuring out home hemodialysis in Denmark. We had planned on his being able to travel with the NxStage System One (the only portable home dialysis machine) but due to tons of red tape and a complete lack of urgency of his care team, time was ticking away, and away, and away.
Thanks to NxStage and HDU (courtesy of Rich Berkowitz) Henning was able to travel to the US for a conference in October. He was officially invited by HDU, and Rich gave us tons of advice and lots of pushing in the right direction. NxStage stepped up and got on board, as Henning is the first Scandinavian and only one of a handful of Europeans on home dialysis to travel to the US, and perhaps the only one to do so for such an extended visit. This is a Very Big Deal, medically speaking.
Thanks to some sponsorship, good connections and a lot of great timing, Henning’s visit has been relatively drama-free. He did have some access issues at first. In Florida at the conference, it was getting pretty urgent as he was unable to dialyze for nearly three days. That’s a lot of days. NOT good. But due to some great support, material, emotional and physical, from NxStage staff, he was able to finally get a good cleaning and we had a great time, over all. I’ll post more about the conference now that I will have some free time to really work on my backlogged posting.
Once we were back in NH, access issues continued to be a problem. Thankfully we have great support here as well, again thanks to NxStage finding a local doctor willing to work with them and Henning. International prescription and care issues continue to be a problem with home hemo users and international travel. His doc did a scan and discovered Henning’s venus access site was about 1/4″ away from the actual fistula. Again, NOT GOOD. And… also… no great surprise. I’ve said it before and I’m sure I’ll say it again, Henning’s care in Denmark is sub-par, and that’s the most flattering comment I can make.
Once Henning established a new access, he’s had no further access issues. In fact, dialysis has been pretty boringly unremarkable, and that’s GOOD.
We have visited some great friends, had some great dinners out, done too much shopping, and spent too much money in the three months he’s been here. We took the girls to New York City the weekend before Christmas, and that was quite an adventure! The girls had never been, and it was great seeing the city fresh from their points of view. Neither Henning nor I had been to the City during the holidays, and we did have a few cranky moments in the crush of Times Square, but otherwise we had a blast. We walked over 120 blocks, and checked off almost everything on our “If you could only spend one day in NYC what would you do” list.
We had a quiet Thanksgiving and Christmas and spent lots of time with the girls. Our oldest lives next door to us, so spending time with her, her fiance and our grandson is always fun!! Megan and Larry are getting married on New Year’s Eve, so I’m thrilled that Henning will be able to be here for that.
We are sad to see his time here end. He goes back to Denmark on January 6th. So we have just a few more days together, this time around. We are already planning the next visit sometime in the spring.
Look for more posts as we catch up after a few months of just reveling in each other’s company.
I am launching a new site, as well. I have decided that it’s time for another journey in transformation. Anyone that knows me knows I spent several years before I met Henning in Self-Discovery Mode. I have managed, with time, therapy, and lots of introspection, to “get past” a lot of major life issues. As most of you also know, I still struggle with finances and fitness. SO… I have decided to challenge myself with a long-term project I call 60 to 50.
You can read about it here: http://60to50.wordpress.com/2013/12/30/welcome-to-60-to-50/
Join me as I say goodbye to 2013 and welcome 2014 with open arms and an open heart.
Happy New Year!!
“That’s not to say I hear the voice of others…the voices are my own…spoken with different intentions and distinguished by their tone.
No one will cut you deeper than the ones you choose to love. They are familiar with your weaknesses and they’ll slice you with their tongues…”
Everyone has got a story…the foundation upon which the sum of their life is built. Little bricks of guilt and fear bound together by the mortar of love, forgiveness and acceptance. Over time, from birth to death, we build the structure that is our perceived persona…and this is how the ego is formed. Ego being the facade you construct around your heart to shelter it from the stinging words of others and the cold of loneliness when no one else is around. The static illusion of that which you desire to project for others to see when the scope of scrutiny zeroes in….every one has got a story and here is part of mine.
I was 12 years old when I discovered I wasn’t “retarded”….that’s what they called it back then. Before the wave of political correctness washed across the conscience of society…leaving in it’s wake infinitely complicated definitions and labels to describe the others we see differently than ourselves.
It was the sum of conditioning over the course of a decade that had brought me to believe that my mental growth had been retarded and I was destined to operate on a level of diminished capacity for my journey through this life. No need to relive the gory details or point fingers of blame as to the cause or the why…it was just that way.
I had been taught to believe that I was retarded and that others could see this immediately. I lacked the grace and skill required to perform the most basic of tasks without “looking like a mongloid.” As I grew older and developed dreams and aspirations of the amazing things I wanted to do and be…it was always with a bittersweet taste of regret, the voice that said…”if I wasn’t retarded…”
Part of me had always challenged this diagnosis…but then again, who wants to be retarded? I was sure that all the other poor souls in their varying degrees of mental retardation felt the same way too.
It was in the 6th grade, when the whole class took the Stanford Achievement Test, that I found out I wasn’t challenged, handicapped…or retarded. We took the test as a class and in usual fashion I was the first one done…which gave me more time to daydream and wonder….never once did the profundity of that test ever cross my mind. Weeks later, when the test results were returned, I was called to the office to discuss the score of my tests…I dreaded every step as I headed to the office to sit down with the principal and counselor….there was going to be another teacher there…the one that worked in the library with other children that couldn’t be in “regular” classes.
I was absolutely sure that my diminished capacity had become so obvious they were pulling me from regular classes and I was going to have to go to class in the rooms in the library. “Being retarded sucks.” I thought, knowing the other kids wouldn’t want to play with me anymore…I walked slowly to the office.
The first few moments of the meeting were spent discussing things that didn’t make sense to me, “cross-section”, “median average deviation”, “top 1 percentile”….none of this made any sense to me, I blamed the retardation…until the word TAG was spoken, I was rapidly losing interest in trying to decipher their code.
“Do you know what TAG is?” Of course I know what tag means to me…but, for some reason I was sure we weren’t talking about the same thing….
“No.” was all I said.
“TAG, stands for Talented and Gifted….it’s a program designed for kids you like you who score really high on the test you took.”
“You mean…I’m NOT retarded?”
“What? NO! Why would you say that? You, young man, score in the top 1 percentile of the nation….you scored better than 99% of everyone who took the test. You are not retarded.” said the suddenly beautiful teacher from the library.
I can’t put into words all of the trauma, emotions and epiphanies that simultaneously condensed and exploded in that one moment of a little boy’s life. I was almost terrified to believe it was true and at the same time vindicated in my long-held belief of misdiagnosis.
I immediately became aware of the ramifications this had on everything I had come to believe. I’d like to tell you that was a turning point in my life…I’d like to tell you that I took from that experience the fuel needed to excel in school and go onto to college…and live a healthy productive life…I’d like to tell you those things, but that wouldn’t be true….
What I can tell you is that it was truly the most significant occurrence on the timeline of my life to date…it is still the most memorable of the hammer blows struck…as the blacksmith forged the tools with which I use to stack the bricks of fear and guilt and lay them in the mortar beds of all my hopes and dreams.
This is it. The post you’ve all been waiting for. No more tips, no more little tricks or techniques. No. This is the real meat and potatoes of how to write. The real deal. Ready?
There’s two things you need to do. Just two. The first is reading, and the second is writing. And I’m not kidding. I am one hundred percent serious. In order to learn how to write really well, you need to read a lot, and write a lot.
Think of it this way. Whenever you read, you’re looking at someone else’s writing. Someone wrote that. And if you’re reading a good book, then they also wrote it well. Don’t just enjoy it, learn from it. Analyze good writing to understand what makes it good. Try to understand what makes it funny, or easy to understand. Once you’ve done that, move on to part two. Writing.
I don’t mean that the next step is to write well. That would be step three, I suppose. No. What I mean is practice. Writing skill is like a muscle. Some people are born stronger – more talented – but no matter who you are, the more you use a muscle, the stronger it gets. And the more you write, the better your writing gets. So write a lot. Essays, ideas, short stories, novelettes, letters. Anything.
Your subconscious mind also plays a large part in your writing, supplying words, ideas and phrases automatically. So the more you write, the better your subconscious will get at writing. That’s why reading a lot is important too. Reading allows your subconscious to absorb, to take note of a clever turn of phrase or a good way to describe something.
So that’s it. Read a lot, and write a lot. That’s how to write well.
I haven’t been posting much lately, but here is a fantastic blog everyone should be reading!!!
BETTER OFF DEAD
A Danish newspaper published a survey today stating that two-thirds of the people questioned support the right to an abortion because of disability in the unborn child. As usual they only mention how many were asked (1002), but not how they were asked or what the exact question was. That leaves us in the dark as to what type of abortion and what type of disability – if any – was mentioned. I know well enough what these things mean when it comes to skewing a survey, that is, they never can stand alone as a measure of anything because of the bias any type of questioning presents.
However, two-thirds of the population of a country that praises itself on being somewhat enlightened (I seriously have my doubts; having to live here every single day)…
I don’t think that most people will really get what I am saying here. Even the majority of my readers will be unable to fathom it. So I have devised a simple exercise for those of you who dare. I want you to go out into a public place where a lot of people are gathered, doesn’t matter where it is as long as you can see a bunch of people. Then you start looking at them individually while thinking about how only every third of them wants you alive. After a while you start the old counting trick… dead, dead, alive, dead, dead alive… etc.
Do you get it now? Two out of three of all the people surrounding me would rather see me gone. I know that a lot of the people I know will protest demonstratively, saying something to this extent: “It’s not you. You live a good life. Nobody would ever do such a thing to you.” And my only reply to that is: “Yes, but only because I didn’t end up as a pile of biological waste next to an operating table in the first place.”
I have no doubts that abortion of disabled fetuses is the ultimate form of discrimination. It is ableism at its worst. Abortion of disabled fetuses is not only performed regularly it is also encouraged by the hospitals. And for once I will suppress my cynical view of doctors who just want to make money or perform research on all kinds of unnecessary things. Doctors are the staunchest proponents of ableism. According to some sources 90% of people with my disability are never being born in Britain.
To most doctors ‘perfection of the human body’ is somewhat of a fundamentalist religion. We, the disabled, are the anti-Christ of that particular religion. We thumb our nose at them by our mere existence. We are living proof that the idea of perfect people in a perfect world is nothing but a pipe dream. So what better solution than to get rid of us before we are really deemed human beings? Out of sight, out of mind.
Deep down I am pro-choice when it comes to woman and childbirth. I have no problem with women making a decision about how they want to live their life. I also know that we can’t just stop medical technology even if it is the real culprit here. It is not the pre-natal screenings that are to blame for this. It is the idea behind them. They obviously rest on a philosophical platform that sees disability as a tragic life event for both the parent(s) and the unborn child.
I am absolutely certain that my mom would not have been able to stand up to the pressure of a doctor telling her that I would have been better off dead. She never questioned their assurances that all the surgeries that I underwent as a child would make my life better. Needless to say, they only made matters worse. They were nothing but experimental exercises, trying to mechanically change the way my muscles, tendons and bones worked. Now it is well-known medical knowledge that these sorts of surgeries only decrease function. The time spent in a cast ruins more than the surgery will ever be able to accomplish. But back then, they didn’t know.
And my parents never stopped to think and see that I only got worse with each surgery. Like most parents today they trusted the doctors. Doctors might not have quite the same status as they did in times past. But they are (supposed to be) the ultimate authority when it comes to our health and our bodies. So it is no wonder that so many parents opt out of having a child with a disability when they are told of all the terrible things that comes with having such a baby.
So what are these terrible things? Is it the impairment that we have to live with? Is it the lack of membership of the ‘bipedal society’? Is it the way we appear differently to others? Is it the mental capacity of living with Down’s syndrome? To me the answers to all of these are a sounding NO!
What is terrible is the normative understanding of what ‘the good life’ is. It is the outright discrimination as well as the subtle understanding that disabled are sub-humans. The eugenic doctors telling our parents that our lives are not worth living, the stranger coming up and feeling sorry for me because my life presumably must be so much worse than his (for some reason it is usually men doing this – pathetic men at that, men with whom I would never swap life circumstances), the mothers whispering to their children a little too loudly in the supermarket “yes, I also feel sorry for him”.
All the people who make the assumption that I live a terrible life are what is terrible about my life.
It is the very definition of tautology at work here. My life must be tragic because everyone assumes my life is tragic. They can all see how tragic it is and therefore it is so. And I must admit it would be absolutely horrific if I fell for the thinking that two out of three people in Denmark subscribe to. But I don’t…
I am an intelligent human being who is able to go against the social consciousness that surrounds me. I have the guts to have independent thoughts and to be a rebel (at least a minor one) and tell the majority that they are fundamentally wrong – not flawed, that I leave to myself and those like me (some of us like to be ‘flawed’ and not fit in)
Like we said in my youth on the subject ‘truth of the majority’: Eat shit, 1.000.000.000 flies can’t be wrong.