There are rules about what I blog and what I don’t. I don’t tell other people’s stories, so if you email me I don’t go ahead and write, “Hey XXX said….” If I do that then jump on me, because I am not respecting those who respect me, and in doing so I am not respecting myself either. Confidence is something I try to keep because I want to be a safe space and a good listener as well as a place to post comments publically.
I don’t write negatively about Linda unless we have talked about it. Linda is my partner and in a week we will have our sixteen year anniversary. That is a big deal to me. Linda could have left me; she had chances, many chances and there were two times, were we drifted apart and Linda was leaving me emotionally and in her heart. She was loving me, but putting emotional distance there too. Recently she did something which no one I know, no one in my extended family on both sides has ever done: She realized that she was treating me as less than an equal person; less than an equal partner and KNOWING that it would be painful and difficult for some time, she told me. She told me because she wanted to change: she wanted herself to change and how we were as a couple to change (which also helped me to choose change). The change was so we were not Elizabeth dying in a horrid way and Linda the caregiver who skates on burnout but Elizabeth and Linda the couple, one who happens to have a lot of medical conditions and the other who happens to help in caring of that. She is a hero.
She analyzed something I wrote, and analyzed herself and decided to act in a way showed one of the great acts of courage and dropped the bomb in a long conversation. During the change in roles due to my medical diseases has Linda abused me emotionally and up to the level of physical? Yes. Yes. But how she did and how she faced that and stopped is something that she will share when she feels like it.
While I am certainly wrong in opinions and the way I do things could be better I honor those who ACT. Linda faced a situation which produced fear and would have a negative outcome for her and acted....because it was right. I email a lot of people, and there are those who are willing to look into that most dreaded mirror, the one which requires change and ACT and those who will not.
And so I know who I trust. Who I grow to love, not because we have never disagreed but because we HAVE disagreed and learned to care more about each other than being acknowledged as right. This blog is about change, it is about my change and my challenges and how I face them, in the most open way I can express. But it is also asking each reader to examine the way they see the world, and themselves and to change. Because unless this is the most perfect of all worlds and you happen to be an archangel and glow in the dark, then we WILL together turn to face what we fear. And whether that, as it did in my case causes body dysmorphia (an inability to see my body correctly) and disordered eating (axorexia for me), or self harm, we go on. Because though I can’t be there as much on your blogs, I still try as much as I can to be there for you, as change pummels you, and as you go on.
Google took over Blogrolling and I couldn’t add blog names I wanted for months like One Sick Mother and the other people who I read (just starting that now). And if you click, they put up ads. I don’t like that, but because I am a tech idiot, I will live with it (click the box to eliminate the ads and you can comment). I don’t put ads on here because I want anything you do to be a choice. And if this isn’t a place which is free of flashing ads where you can enjoy the words and pictures, have fun, see squirrels, think and meditate and yes, choose if you want to help me or other people/organizations I talk about. What IS the difference between me going, “Hey, there is a really cool photo book on Elephants in my wishlist that Linda would love for her anniversary” (A Shadow Falls - HINT!) and me collecting hits from ads? Not much except that what I do, even my shortcomings I do in open (like how I am running out of Florastor which is the only thing that allows me to absorb what I do, even though I am officially malnourished - whee, fun! Linda just told me as I was editing this). Your choice is something that means something to me and I hope that every person who gives also receives (if not, drop me a line, I am human!). I don’t believe in giving gifts at Xmas, not when your life expectancy is the same as blackberry season. So I give whenever a message, a comment, or a voice inside tells me that someone could use something to say, “I care, I love you.”
So Linda is my hero, not just because every time I call in pain at night, she is there, caring every time, but because she did not what was easy but what was hard, but what saved us.
Back to you and the blog. I like this blog, and instead of doing a book of essays or another fiction book I put 25% of my life into this blog. And I liked writing for the BBC because there were people all over the world that I got to meet, people from Australia, from the EU, from the UK. These days, more people ask me for postcards and have no idea this blog exists because according to Technorati this blog has no influence. No one quotes it, or refers to and hasn’t in four months. My ‘influence’ has dropped from 146 to 3 (ouch!). While the 7 to 9 of The Postcard Project gets more notice. I would like to write for another health online venue but with a rapidly changing condition, I have not found one which will accept me. Alas.
This started out as the fencing and writing academic girl blog with a bit of feminism thrown in. Then it was the, ‘Golly I’m disabled blog.” Which was sort of wild and funny because I am sort of wild and funny (I still am you know). And then it became the ‘Girl Dying blog’ mixed with “Geez that could be me.” Because my disease crosses from SCI, connective tissue disorder, numbness, autoimmune diseases, Raynauds, nausea, nerve pain, muscle pain, bed days, loss of 'spoons’ and fighting and being frustrated in the medical system. Well, except now I am still alive.
Yeah. And you know what, as much as I would love to have you tell your friends online, in facebook, in twitter, in other continents to come and give me a read, a chance (and I appreciate the time people take to read me) remember NDY. Because while it is obvious that if I somehow am in control of this world, and while I live on I must be a bit of a masochist ergo the ‘modern medical system’ (MODERN my ASS! I have encountered doctors who haven't heard medical breakthroughs from the 1980’s – yo doc, there is a HIV cocktail now!). That you don’t have to remember, but this; that in all things I am pushing myself more than 100%, that every day, EVERY day, I am collected, I am picked up off the floor from trying. That I fall and fall, until even those who love me can’t stand to watch because I don’t give up, not now, not ever. I will ROAR because I am Elizabeth Fucking McClung and I am NOT DEAD YET and unless you are God, get used to it. Okay!? This is not an ‘Easy Stereotype blog’, and yeah, it going to hurt to read here and it going to challenge you. But at the end of the day, when you go out for pizza, I have to be held down, fevered and screaming. And I am not the only one, I am just the articulate representative for those who fall through the cracks, for those not easily defined. I am the one trying to speak for every woman, every man who has a doctor decides it is easier to blame the patient than say, “I just don’t know” (there are thousands of ways a disease/chronic condition manifests and thousands more where a doctor can be a obtuse jerk). So for those who go into a doctor’s office and hear those words wash over them from the white coats that they are now the one in six, disabled, and life will not be the same. But it goes on.
And until I draw my last breath, and until my heart makes that last beat, I go on. And in every encounter I try to help the person change to make a hard choice, to learn (translation: I piss off the medicos mightily!).
So, I am going to be looking forward, and here are some things to look forward to. I plan to unveil the carving of Jason Hunt with pictures in the week ahead. I, or rather CHERYL, or was it LINDA took a leap of faith/stupidity. In that there was a great seat sale to Hawaii, so sometime in October, I think early we are going to Hawaii! We just don’t have any of the money to like, sleep or get around or eat. And Linda says that is it both long, long away and not long away. So I am sort of doing the running around in place inside my head going, “Ahhhhhhhhh” before I hit the brick wall, fall down, get up and do it again. I can’t tell to be happy that we are going to hawaii or not. But I have determined to raise $800-$1000 to cover my costs. My allowance, is about $25-30 a week. I don’t know but I am pretty sure that isn’t going to do it.
I am going to do at least one road race with my racing wheelchair between now and Hawaii. Why? Because I AM NOT DEAD YET! So prepare your ‘Will she die this time’ betting pool, and let’s get it on.
And I went to the doctor today, the NICE doctor, the one who put me on Synthoid (gee, why do I keep going back to HER?). And though I do not have a GP, she keeps refilling my prescriptions and we had talked previously about pain control (she referred me to the pain clinic, the owner where she works canned it and I cried), but we also talked about medicinal Marijuana. And she filled out the form today. She took it, and looked at it and decided she didn’t WANT to say that she didn’t think I shouldn’t have medicinal marijuana, and so decided to cross out the line which said she would monitor me regularly and explain the GP issue and then check the, “I would recommend this patient for medicinal marijuana.” Which sort of blew me away (I mean, a doctor wanting to help me?).
She also looked at my toe and told me that they don’t do anything for broken toes like put them in casts in they are straight (this is the toe which ‘broke the door’ which had been slammed and banged 1,000 times). “They heal” she told me. Um, okay. So we drove from there right to the society which administers the medicinal marijuana in cookies and tea and for gluten free and such. And waited while they called the doctor to make sure that we didn’t make this up ourselves (do people do that?), and so they are covered and tomorrow I go for my induction to the world of medicinal marijuana.
I have a confession, I have NEVER EVER had a non-prescribed drug and even morphine I was only on for a few hours before I begged them to take it off. So no, I have never had a toke, I’ve never even smoked. No, I have NOT lived in a convent (well a cult but…). Just never did, I mean I am already really kind of OUT there sometimes and I figured not to mess with the things I had borrowed money and lived in the woods to put all this education into: my head. But now, getting a night’s sleep would be good for Linda and for me. So that is the plan, some tea for bedtime. Or what they recommend. That is tomorrow.
Hawaii (omg, I am going to Hawaii! Maybe!) Damn, I actually NEED manga for now, which is taking my money and yet Hawaii is the dream and people need dreams too. Because it is a long cold winter ahead, baby. Then there is the anniversary, and then me getting stoned.
So now we can share this adventure together, which I think is better. Sorry I didn’t tell you before (well actually the doctor visit I found out 87 minutes before we went), but now we work together, love together, dream together and yes, maybe die together. Because my being dead is still very much on the plate with my autoimmune disease unknown, central and peripheral autonomic failure and peripheral neuropathy. Yes, this house is BURNING DOWN. The neuropathy has reached my head and is now going at my nerves from all over taking the BIG nerves, and my spine trying to hold out, keep sending messages like a telegraph operator in a war. Which is why it is sword of fire all day and night long pain wise, I don’t move body parts so much because I can't, except to type though every movement hurts, every breath, every letter of this blog.
I do it because I choose my life, and I am NOT DEAD YET, just plain determined and stupid sometimes.
So can you please do me two favors: 1) Link me far and wide please? I would love to have readers throughout Europe, more in Australia, in China, in Tibet, because to be born is to die (sorry, Buddhist thing, that if you are born....then you must die, and so it is natural and part of life). And both are celebrations of change worth recording.
If not the blog itself how about my late blog on Disablism here, or the ‘Which child were you: age 2-10?” here or ‘five Manga review and ‘when your best friend is straight: a survival guide’ here (learning that some people are the hetero, and you may be a friend of the hetero can be a shock for some). Or ‘Boys with gendered girls interests (girly boys)’ here
The second thing is to please, please tell me how to improve this blog. I do not want it to be the pain and darkness blog. And yeah, I died, I got resuscitated, I died again, and again, and I still go on, am I a supposed to apologize that I am harder to kill than Rasputian? Okay, my warrantee is up, I am still losing things, still figuring stuff out. So lets talk about it? What do you want, more fun blogs? More blog where you get to talk and I just set the stage? More sexy talk? Or one essay a week about the premise of ideas in health care and how that works out (or doesn’t) with examples. Please let me know.
Thanks for reading this far, you made it to the end. Here is an ‘Ahhhh!” picture. Sixteen years next week and one relationship, ever changing as we do. I hope this blog to be the same.
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