Well Practiced Survival and the Art of Happiness (Potential PTSD Trigger Warning)

I hit a speed bump tonight. My brain splatted as I hit the mental pavement and I am sitting here stuck. The speed bump? Happiness. I am happy so it makes me sad. I keep thinking about why that is and I suspect it has something to do with the tenets of survival. I have well practiced fear, anger, sorrow but I have almost no experience with happiness. Happy was the fleeting moment that escaped so quickly and I held on to for years. I can name my happiest moments and its a very limited number. 1. Comic book convention last June, 2. Sprite and the first time I had a flashback and she was there, 3. Gothmas with M, 4. My first time being published.

That last one I had to struggle to pull through the mists of time and survival. I was thinking too about the domestic violence cycle and how cut off people are. I grew up without friends. Even now my friendships are limited. Some of that is the autism factor, I just struggle there but a lot of it is because I trust very few people. How can I trust you? You might be out to get me. I am working on this alone but I do not want to. I never wanted to do it all alone. I never wanted to have to figure out how to beat domestic violence by myself. It should not be about clawing my way up ever. Yet it has been.

I have been trying to find a therapist for five years. Since I escaped my exhusband. I thought I might not make it. Maybe I should settle for one of the quacks who try to lure me in with promises of touching me while praying but I do not think so. I don’t think my wanting to mock this person for being what I perceive as a predator on the vulnerable with their unproven techniques and faith healing is going to be a valuable moment in time. I still survived him alone. It was not even over then. It is just over. Does that make me now really a survivor?

Yes and No. I was a survivor all along but in a way not being afraid has opened up all of these memories and painful things. Its over so now I can process. I am thinking on things from when I was five, that I never considered before. My brain is just now allowing itself to sort through nearly thirty years of stuff. Not all of it is bad. Not all of it is abuse. Not all of it matters. Yet it is there burbling around. If I think of my friends instead of them I end up with my first day in Kindergarten at the age of four, walking in and being called weird before I said a word.

I think on the isolation that goes with abuse and I want to try new things to see if its actually my way or if it is a side effect. I grew up surviving and being too out cast and bullied for friends. Am I so alone now because I just never learned how or is it because I am afraid of my own friends? I don’t know. I do not feel fear when Ithink of each individual. I feel happy. Yet I worry.

I talked a lotof this out with a couple of my friends. I have had friends for seven years now, but it still amazes me when I can say that. One suggested a support group. I looked some time ago, I believe last year, but figured maybe I should. She went to bed and I began to google. I found many local support groups. Tons for folks with cancer, tons for things I do not understand such as video games, and yet for all of the domestic violence groups listed with the local news papers, online in google, and even with the various agencies that help you get out if you are not disabled the only groups are for the ABUSERS. Oh there was one for single parents. Not a one for women. There is one for soldiers with PTSD but I am not a soldier. There is one for everyone but me. I still wrote some down and may call but I already feel that is an intrusion. I do not fit by not having a child, by being a woman, by not being with my abuser now.

I am not at a point where I can just remedy this by going “Okay we meet here, come on ladies and lets survive more.” That is not what I can do right now. I did it before for another need. When I first was disabled I helped with creating a chronic disease support group. Then retreated from it because I was not ready. I will not make that mistake again. So I am left hanging between faith healers and the disabling abusers getting help and my own independence. It cannot just be a side effect of abuse or I would not have survived being alone but I am wondering why I am supposed to do this part by myself too.

I do not want to. I want the experience of people who do not get frightened by happiness. Or people who do but can tell me what the difference between estatic, joy and elation is. My brain cannot stop pressing on the happiness to see what is wrong with it. There is no room in my head for joy. I want to change that but I am lost out at sea without a compass or the north star. There are no maps. It is just silence and placid and gentle waves. I do not know how to be gentle. I do not know how to let go of the anger. I am still angry at my abusers but it is smaller every day. They are dead. I out lived them and can focus on doing more than just clawing through every day.

I am also very tired. I do not want to spend the rest of my life fighting alone to figure out if its okay to smile all the time. My face is sore. Its not the usual sore of the jaw dislocations Its my mouth. From smiling. I keep doing so for no reason. I keep laughing more and more. This is not just a side effect of the surviving either. This happiness started growing long before my exhusband died.  The sensations when I stop thinking or just feel are not the same. It is no longer a hard sandpaper or stabbing pain. It is not a pain at all. Nor is it really emptiness. It is soft and quiet there. The passions are still burning in me but they do not scream to be heard over my sorrow. It is simply quiet, and I have never had that either.

I never expected the thing that would make me cave in on asking for help with my PTSD and other struggles would be happiness. I suspected someday I might have a challenge bigger than I could face alone. This is not even true. It is just that I know I do not have to do it by myself and I do not want to.

I am a ship at sea, no port to call home. The current pulls me, so I go to roam. I am a ship at sea, the waves a song to me. Far from even the open road. The winds rise and my ship sails on, to new lands will I go? Tomorrow I may find land ahoy but tonight I am just adrift in the sea.

The Little Things That Matter

I have skipped napping today, and I feel pretty good. I tried something new this year. I broke all my rules about November. I wondered for a moment if they were really making things worse, these rituals that are dedicated to surviving the mental pain. The answer was no, and yes. There was nothing that was really worse than trying to just wait for December for decorating my home for the Winter Holiday I celebrate, dubbed Gothmas. In fact, this month I spent some of my money on a new tree, a nice big black one. Big means three feet tall. I took the time with my carer and for the last ten days I have been either out of the house, decorating my tree, or organizing something I don’t want to deal with.

I also have gotten Sylvani’s castration completed. At last. I know why the Torrance County Animal Shelter acted hinky too, though I wasn’t supposed to hear the conversation about their unpaid bills. In fact the Animal Humane Society has changed a lot since Sprite’s botched surgery. The six years have changed their system greatly. Now it is computerized. You pull a ticket like a deli number and wait. I had people willing to help me, and although a bus driver killed my sunshade enroute so I was left carrying an upset tom cat and all the pieces he ripped off, the people around me helped. The only person not helpful was clearly ill equipped for a social situation so I just tried to avoid him. He wore a dirty litterbox scooper on his belt, which was gross and enough of a reason for me to steer clear. I think he was flirting, but I had other people run interference for me again, because it was clear I was not only uninterested in his advances but I was unable to escape since the sidewalk was not very big.

In fact, the weather held on, it was warm enough that day that my four rides on the bus (Two out to the shelter/vet and two home) weren’t so bad. I didn’t get cold as I expected, I had no issues regarding my violating the rules and bringing a cat on the bus who wasn’t a service animal, and even with the destruction of the sunshade the Bus Company surprised me by taking this seriously and giving me an insurance claim so I can get the medically necessary device replaced. I gave them all the info so they will pull the video that protects me. They also will inspect the buses I rode on since the lifts broke while I was in mid air. Everything went against Vani and myself making it to the shelter. I could have been turned away for his castration even based on the behavior of the country shelter vs the city shelter.

Though I was exhausted by the time I got to the shelter the first time, the day went well. Vani is recovering very well despite his having an accident. I ran over him this morning and dislocated his tail. His vet said he is fine and I missed his balls so we’re good. I checked him out and thought his tail was broken. I then made myself continue the plan. I went for a walk with money and I bought a Jewelry Armoire. That piece of wood and glass was something I saved up for last month, and they upped the price. So I couldn’t get the cat toy I wanted, though that may happen tomorrow after I pay the last of my bills. I have everything else I need, and I even got some very cool Halloween clearance. I got the black tree, and between all of the things I wanted and didn’t have to stress over and the things I needed, I got the last of the Armoire’s in the store, and they aren’t getting anymore. Ever.

M the Carer put it together before I finished calling to see if there is any progress on my wheelchair, we found out the repair guy never filed a report about my chair which means no progress there and I probably got him fired since that’s not what you do when it comes to wheelchairs and the supervisor I spoke with was very unhappy about it. She worked fast. So I just spent what turned out to be four hours unloading ten different jewelry boxes. There is still room in the armoire, which means not only do I have less stuff boxed away, but my jewelry is accessible and it is in a space where I can sit in my wheelchair and still access hair and make up as well as clothing. I am working on feeling beautiful everyday not just some of the time. Especially now.

I found a lot of my jewelry was damaged by the years of homelessness, the exhusband, and so on. So I have a pile of earrings to convert to clips, chains to repair, and so on and so forth. It is something I can do for the most part and it’s more to focus on. I am not overworking myself either, which is difficult sometimes.

Sylvani is asleep at my feet, Sprite is on my bed laying on the velvet dress I wore today, and I am feeling at peace knowing that my valuable jewelry (diamonds, pearls, rubies, and hand cut crystal) are safe. I can wear them if I want, and now there is no worrying about how to find what I want. I sorted everything by wearability. Admittedly a few things I will never wear, yet they have sentimental value. The first necklace that my niece made, just for me, I will not wear but that is merely because I want it to last and it is delicate. I like to see her potential when I look at it.

My house is nearly out of boxes to unpack. It only took a year but that’s alright. I had to adapt to my space. I still need more shelves but this will be a life long battle. Shelf space. The Gothmas tree topper is grinning at me and since my fingers grow weary I will just say, it has been nice to have the little things. I am still a bit out of it, yet this level of dissassociation is the end of October’s normal. I am two weeks in to November, and I am still here. The light switch isn’t so heavy as I recall.

I even rose to the mental challenge of getting the acting role I wanted (batman!) and since some of the feline medical supplies are MIA I had to be creative when it came time to get Sylvani’s body restricted. I am writing an instructable on how a hole punch, a folder, and some ribbon or any other sort of lace (shoe would work) can create a restrictive collar to protect your furry friends. This collar seems to be more comfortable for him than the plastic kind I have misplaced too.

 

I guess this could be a sort of Thankful post, because I am thankful for these little things. I am thankful. I dislike the term in this month so maybe grateful is better. I have M the Carer and M my best friend, I have Sprite and Sylvani, it seems I surrounded myself with alliteration. I know for a fact that I am strong enough to not just manage but thrive. I couldn’t decorate last year for Gothmas in the way I wanted. The tiny tree and hurtful memories made things harder. I am going to stay “here” for as long as I can. I, for the first time, think I will be conscious and aware for Thanksgiving day.

I guess I should include a note about my fall the other day, which could have been serious too. No worrying, I am fine. I just somehow managed to fall trying to get into bed and then fell out of bed once I made it into bed the day of Vani’s castration. I know it was fatigue, so I rested for two days. No bruises, I have a fat lip and a sore bicep and that’s it. No need for the ER. No extra dislocations except my jaw and I don’t look like a victim of domestic violence. I am not pale from extra pain, and so all is well. Even that made me realize, I eally am with it. I wish I had figured the things out I know years ago to heal but healing is a process. I have a long way to go still too.

I still just feel so GOOD. It’s weird and somewhat scary in a way because I don’t know what to do with all this time. I am going to a museum sometime next week or something. There’s an exhibit about the (redacted)¬† that has a unique aspect that is often (almost always) overlooked. After I go I will write about it for safety reasons.

The Cliche of Anger

I am tired, in massive pain, and yet I still am riding on the waves of fulfillment. I worked an entire week straight. I am taking a few more days to get back to my standard however, and reminded myself why I do not work in a traditional manner. I would have been fired today for being unable to wear standard clothing for one, and my attitude for another. Every action I take, every interaction I am bogged down by references to the past, lessons, and reminders. I hear my mother’s voice most clearly, and that is not something I welcome. I want to be an individual not the product of my family.

I wasn’t going to post until tomorrow but I was reading a few pages over at Womanist Musings. The proprietor of Womanist Musings has recently outed herself as being amid the disabled. She is beginning to run into the challenges of being suddenly unwelcome, invisible, and at times hated for merely existing. Today one of the commenters told her that she should start a civil rights movement, ignoring the fact that the disabled community has been pulling for equal rights for as long as other civil rights movements have been in effect. Before we go on, I want to remind you my dear reader that every single civil rights movement hasn’t ended, and that the fight for equality is on going no matter what your ism is. This reader seemed to think that a few protests fix everything.

This ignores the protests in New York, the individuals who do sacrifice their energy and at times sanity to try and force businesses to comply with the laws, and it ignores the fact that there are those who came before you and I. This is an erasure of our history. I responded with snideness and sarcasm, ignoring for the few moments it took to suggest a hacksaw so she could remove her legs as “easily” as I can get off of my scooter, the voice of my mother. “All disabled people are angry, they think they have rights.” I am aware that it is the events of today that shape the memories that seem to nitpick at us. Before I was disabled my sexuality was most often the harbinger of a Mommy Memory. “Bisexuals are selfish, they just want to have sex with as many people as possible.” Every time I went to flirt with a woman or a man, I heard something like that.

The myth of anger is just that, a myth. It erases the happy moments with friends and family, it erases the moments where competent and open minded people realize that everyone has rights. The myth of anger is often used to subjugate. Stop being angry, so that I can continue to oppress you. That is what I hear. The expectation that an entire group of people must never feel one emotion is ridiculous yet this is foisted on women of color, the disabled, homosexuals, and countless other oppressed groups, all to control us. Anger is forbidden.

Many times when I am smiling, I am told, “This inaccessible area will be fixed soon, we swear!” The tone is always frantic, that hint of “Oh god she will be mad that we haven’t done this yet.” It doesn’t matter that I am smiling and just nod and say, “Great, thanks for letting me know.” The fear of my anger, which is some how more toxic than their anger or fear is there. I still don’t understand it, but, I see this often. The times when I am angry, I am also not heard. It’s enough for me to want to go back to trying to be Super Cripple, but, I won’t do that.

My anger is valid. Your anger is valid. Anger is not a reason to oppress, discriminate, or subjugate. Anger is not an excuse to not build the ramp in an accessible manner, and anger is not an excuse to try to “just get rid of” someone. I am tired today, and I am trying to seem reasonable. My mind is far from reasonable. I am in truth alone, and am having a small tantrum every time I need to get up to move. My fiance forgot to feed the cats, which merited an hour of sitting there whining about how I wasn’t sure if I could do it, I can’t bend, and their bowls are on the floor.

It wasn’t anger that had me make a really big mess trying to feed them either. That was love. They were hungry so I fed them, without bending. (Sorry honey, but the kitties have to eat too!) It won’t be anger that I let him know he forgot either, but amusement. Every emotion that I have is not anger. The lessons that our parents teach us, may shape what we see but it is the choice that I made in my first experience with disability as an adult that showed me otherwise. I chose to not see anger.

It’s really that simple. Demeaning an entire group of people does cause anger. If you fear our anger so much, stop discriminating. If you come near me right this second and discriminate I will show you anger, but I won’t run you down with my scooter. That’d hurt me too, and you just aren’t worth my time or pain.

To my friends, allies, and fellow disabled persons, don’t forget that every moment that we are alive is the revolution for our people. Every time we are seen out of our homes, with our assistance equipment, service animals, and even having issues, this is our revolution. VIVA LA REVOLUCION! Free my people!

“Happy” Anniversary (Trigger Warning)

Yes, that says “Happy”. I am not sure this anniversary will ever be happy. I chose today to teach a class. I am trying to wind my brain down from the horrors that are the sound of fireworks. I spent the entire day in my room being cranky with myself. I got over that fairly early actually and enjoyed a mental vent session by reading a site called http://www.passiveaggressivenotes.com . Eight hours later I am feeling almost normal and great for a stressful PTSD triggering day. This was the first fourth of July where I did not get sick from the smoke.

I am still feeling like the world is made of sand paper against my skin, but, I can control my snarkiness now. It’s in my head, and that has always been the case. I like to think that even Spock from Star Trek actually thought vindictive things up. “Vulcan Blood. I’ll show you McCoy!” If not, well, I am definately not a Vulcan or a Half Breed so it doesn’t matter. I am just human. That has been the theme for the week. I am just human. I am not Super Cripple, Amazing Woman, or even Functional. Just human. In preparing for the class I am to teach in nine hours, I realized I chose this day on purpose.

This is where I pause, and hide the triggering things, so you have to click a link today to get to the rest of the juicy details. Continue reading

Contentment

I just got in from another Toastmaster’s meeting. Tomorrow I am going to lead a meeting, and I am looking forward to it. Right now however I am relaxing after two days where I pushed myself a bit too far. I took three naps today, just to make it through to the end. I do love being able to nap. I am watching one of the few reality shows I enjoy. “Make me a Supermodel.” It fills me with nostalgia, and it actually entertains me.

I used to model. Not much, but, I have experience and I like to see the real talent on this show. I know, it’s not the original but this one has somethings that are unique. Just try it if you want. This was just a great day. I woke up with both the cats snuggling me with every nap, Sprite was willing to work but I made her stay home. She wanted to be cuddled, and I couldn’t cuddle her and give a speech that is similar to the essay 30 Seconds. It wouldn’t mesh well with what I needed to feel.

The evaluator’s comments are sticking with me in a good way. I also found out that I have a super power. I have super hearing. I went to the audiologist. My moderate tones, such as where people speak, are low but still with in the normal range. The super bit comes with the high pitched sounds. I can hear things most people can’t and it hurts. It turns out I am not crazy.

The doctor and I were both surprised to find I don’t have hearing loss, that the hearing issues are mostly caused by hearing every little squeak and sound. I am not sure if this is partly due to autism or if it is a side effect of the continuous and untreated ear infections. I will get my hearing tested annually as recommended but again, another bit of delicious goodness in the fact that I can hear just right. It might feel off but, I’d rather hear too much than too little.

I am posting what feels like frivolity to me because I want there to be valleys between the dramatic writing and pain that I share with you. I want every reader to share with me the good as well as the bad. It is a basic bit of writing, and as my life progresses there is so much good. I have a man in my life who makes me happy, just by being there. I have two loving and soft animals who like to steal the covers. I have dreams. Can anything be more wonderful? I am sure it can but it is fathomless to me right now.

See you tomorrow after Toastmasters! I will post the better of the two videos, as I am giving the same speech. I hope you can enjoy the postings of my speeches.

Calling all Politicians

Sometimes you have to pick up the phone and call people. I personally hate telephones. I barely can hear the people on the other end, there is this whine, and not being able to see their faces makes me nervous. What if I cannot hear them? I hate the constant what what whating. It makes me feel inept.

My Person found me a speaker phone, as our cheap little workable phone doesn’t have one, and I was not answer any calls. I just shut down the communications line and went lalalala when the phone rang. I would of course call back if someone left a voice mail, eventually. Some people are important enough to endure the evil phone for. Myself included.

This morning I decided to call my Senators and Congressman to find out what their opinions on Non dog Service animals are. I also shared my need for my cat. This is in response to Obama giving more time before the vote being cast on the DOJ’s pending ADA regulations that would ban the use of any species other than dogs as service animals. The exact regulation in question is “Title III Regulation 28 CFR Part 36: Nondiscrimination on the Basis of Disability by Public Accommodations and in Commercial Facilities.

This is the very regulation that lead to a comments threat and began my Blogging. The first call was the hardest. I dialed the long distance number to Washington, waited for the phone to ring. Instead of a ring a voice came out, “Martin Heinreich’s office.” I froze, then Toastmaster’s instinct took over. After explaining my call I was given a number that would get me faster results. Calling that, I had a conversation with a young man, who is likely older than I am, and educated him on why this law is discriminatory. He became excited, and impassioned. He told me he will fight for me and others with nondog service animals. I found this video at another¬† blog. The big event showing her stupidity is at 8:40. At that point you are likely to lose any respect you had for this woman.

I do admit some regulation needs to be made with in the service animal laws to protect service animal users from the Fakers such as Rosie O’Donnell destroying the little respect we service animal users get. I am lucky that most people when protesting my use of a service animal hesitate on the grounds of never seeing a cat who is well trained or can handle the duties and tasks given, but, mine is almost always on her best behavior.

All service animals have bad days. Usually Sprite gets one day off a week. Her first day out after her month of serious illness was a hard day, but, she behaved admirably. Indeed, when I started my phone calls both she and Mr.Shakespurr came and listened. Sprite, upon hearing one of the aides to the second senator protest her existence tried to hang up the phone. I barely caught her paw. I explained her, in terms they could understand. “I can’t bend or walk. I use a wheelchair. She can be an extra long arm for me, or if I drop something, I do not have to wait for someone else to get it. She returned my life and independence to me.” I think the last sentence had the biggest impact.

Six phone calls for three politicians later and I feel good. I am going to help them understand that not all dogs make good service animals and some people need alternatives. I used the phrases, “It is discrimination to vote for this bill, what about those of us with serious allergies to dogs? Should we be further handicapped by this?” Most of the workers held passion. They reflected my own zeal and none of them treated me as if I was not important.

I also called the Mayor’s office and for once found someone who was intelligent and understanding about my call. He made a promise last year to train the local police on how to handle an ADA disturbance. I am often reported to the police as if my rights are a crime, and am tired of their enforcing the negative behavior. I am no criminal, I just want to buy groceries and live a normal life. I am now waiting on the return call, there is an assigned person, responsible for this. This is progress.

The added joy, a rarity with any form of politics and telephones, either alone or together, is the joy of telling someone. “Hang on, I am talking with my Senator.” It isn’t getting to say that which causes the joy, it is the discussion that follows after the call about why I am calling a politician. Why is it important to advocate for my rights? To make my voice heard? Because, if I do not speak up, no one else will speak for me.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

When Advocacy is like an Onion

Advocacy is like an onion. It has many layers, and each layer is not quite the same as the outside layer. Starting from the inside you have a core of people, the advocates for each organization that are well known on a National and International level. Each layer is a ring of less active people, less aware people.

Each layer going out has less moisture and vitality. When you cook an onion you usually peel off a few layers and discard them. This is where Advocacy is not like an onion. You cannot discard the outer layer. The outer layer consists of the people who have no information access. They are the people who advocates need to help the most. They are the most likely to be abused, they are the most likely to suffer, and they are the most likely to desire death out of neglect.

I have been in many layers of our Advocacy onion, and I know those layers very well. I work each day to try and help every layer I can access, and this includes looking for people in need. This sounds paranoid to some when I explain it to them but it is an essential part of advocacy. One example comes from a blog called Chewing the fat. You can read the entire story there, but the author was first abused by a stranger, and then took note that the stranger was a care giver. They then made a choice and reached out. The second part of that story is linked here, I won’t spoil the ending for you, you can read it on their site but know as you do, the victim in the story was the outermost layer of the onion. Now she has found herself on a new level.

The other way that advocacy is like an onion is it can make you cry. I myself am challenged with showing my emotions, even alone crying is a struggle. I have never cried so much in my life as when fighting for the rights of myself and others. Cutting into an onion triggers a chemical reaction, just as at times the tears are triggered by of all things endorphins. Sometimes I cry when advocacy goes so well that the joy in my heart overflows. It can be boundless. Other times my frustration and anger bring me to tears. Any emotion that can be felt can be magnified by the act of Advocacy.

Another way that advocacy is like an Onion is simply this. I hate onions. I really hate having to constantly advocate. I do not just dislike it, I hate the pain. Advocating hurts me, it burns up my stomach at times, it leaves me exposed to the sun, it cuts my soul open and lets even strangers poke at it with their sharp sticks of injustice. I am allergic to onions, they burn my flesh when I touch them, they split my skin, and my eyes like to swell shut after, blinding me.Sometimes people who ignore the truth, wasting my energy and causing pain blind me to the happy moments I can have.

The last way that I will share, but far from the last way that sets out truth, is this. Onions and advocacy can add spice. Isn’t variety the spice of life? My advocacy takes me on a strange and varied journey. I never know what each moment will bring, there is no predictability. This causes me to thrive. Onions add flavour to flavourless dishes, they change things, and they can make a good meal better, barring allergies.

For every layer of the world’s largest onion, there are more analogies. You likely have thought of some of your own while reading this.I cannot ever give up advocacy, for myself mostly, but for every single person that I have helped.

Do you like onions?

Firing your Doctor

I followed a link in a blog and it lead me to Alas, a Blog. I found there a well written essay on undiagnosed chronic pain. The focus is on women and is intersectional because it deals with discrimination and medicine. As any disabled person knows, doctors do not always listen. It is easier to get a diagnosis when they are fresh out of Med School, but that diagnosis can be wrong via wrote of inexperience. I have written two other How To posts, and this is the third. How do you fire a doctor?

Step 1. Determine why you do not feel you are recieving adequate care. At times this comes from a doctor being frustrated that you are not magically cured of your congenital issues, and then losing their effectiveness. Other times this comes from sitting in the ER for three days wishing you could just get some help, being told “No drinking or eating, the doctor might need to operate” and being told that they can see nothing wrong with you, without tests.

Lets start with the latter first.

Step 2. Become the Bad Patient, Angry Cripple, or Annoying but Empowered Patient who knows their body better than their doctor. Most people when seeking medical treatment have a vague idea of what is going on already. They know where it hurts, and yet it is not really their job to know why before they get to the doctor. Most people in the Emergency Room are often disoriented, queasy, and focused on a fast cure. That is the tenet of the ER. When you do not get your care you must ask, as calmly and politely as you can, “I want a second opinion, can I please see another doctor?”

Expect anger. No professional wants to be second guessed. None of them like it, but some will gladly send you to see someone else.

Step 3. When they decide to ignore it and try and send you home, you might need to call an advocate. If you are disabled it is easier to find advocates, but if you are able find someone who is coherent to help push for your needs. This step is best done before you are in the ER, but, sometimes you can find a patient who knows how to handle it and is willing to help you. This advocate will help you repeat your request for a second opinion over and over until you finally see another doctor.

Step 4. If you can, remember to breathe between each step, each sentence, to try and retain a claear head. It is horribly annoying but remember losing your temper will make it worse for you, and no one else.

Step 5. IF you are in an Emergency situation and are at risk of death, DO NOT GO HOME. You need to stay there, even if they want to send you home. You might need to sign in right off, after leaving. If you are uninsured this can raise your bills. This is horrible, but, if you are in danger of death money is not an object.

Returning to our first scenario, firing your Primary Care Physician:

Step 2. Write a letter to your doctor, you are not sending this letter but you are detailing out why you do not want them to see you any longer. If you are insured you might need to write a letter to your insurance explaining these very things. You will have to explain to your new doctor why you left your previous PCP (Primary Care Physician) or Specialist if they are in the same health care system. In many cities one stands above the rest for their level of care, my personal choice is to stay with in the system I know and trust may differ from yours.

Step 3. Try and find a list of approved doctors with in your insurance, if you have insurance. If not, then, this step still applies. Find a list of doctors. Depending on how you work you might want to contact your local medical review board for a list of physicians with complaints against them. In America this is legal, if you are not in the US, you can still find this information. Some of it is available on the internet. If you still trust your previous doctor, try asking for a recommendation.

Step 4. Write a list of your known medical complaints, when and where you were diagnosed, if you have any preexisting conditions, and write a list of expectations for your doctor. Remember to stay reasonable, you cannot expect your doctor to do anything that goes against their personal morals or professional morals.

Step 5. Make the appointment. If you do not feel safe, do not stay in the appointment. You have freedom, you can leave at anytime. IF this is the case, start at step three.

There are other times you might need to fire a doctor. Very rarely have I said to a doctor, “You are fired.” I have however, said it most in the ER. Remember, firing a doctor does not black list you from treatment. It does not preclude you from proper care, and it does sometimes make a difference.

Your pain is not in your head. You can find an answer, do not give up. Remember, there is no such thing as Hypochondria. You have the right to proper medical care. If you are uninsured most hospitals have payment programs, or will even waive the cost if you are unemployed or low income. No money is not an excuse for a lack of care. In the US (sorry I just do not know the other countries laws well enough) you are guaranteed medical care in an emergency, and can often obtain it outside of one.

Friendship

In the last few days I have been assessing my friendships. I do this periodically and for the first time in years I have not felt the need to discard a relationship. This sounds cold, I discard people who I no longer desire in my life. It might be an action that hurts feelings yet, that is usually the impetus for cutting someone out. What makes me assess my relationships? Need. I have needs that if my friends cannot meet causes issues.

I see myself as passionate, some will always find me abrasive. I am capable of great anger, but few people even acknowledge this. I am supposed to be quiet, docile. I fail at this. Docility is death in my world. My world is not often the world others can percieve either. If someone expects comfort from me, they may not always get it.

Assessment comes from altercation. This is human nature. My dearest of friends are years long relationships that I foster and tend. Some of my friends barely qualify by the standards of most. I do not see them for years, or only in the text of the internet. This does not mean that they are not friends. To me friendship means communion, sharing ideas, and often healthy debates.

Last night I cussed at someone for the first time, he and I disagreed. He desired comfort. He needed it. He also should know by now (and admits this) that I am not a nurtering type in the traditional way. I do offer comfort, but my comfort isn’t being held to my bosom. It is instead at times a reprimand, other times a reminder, or information that they need to comprehend a deed. My friend has made some wonderful changes in his life based on these comforts.

This conversation lead to the topic of Motherhood. The most underpaid, under appreciated and undervalued position in the world. My views on that are changing. I did not value motherhood at all when I woke. I did not see the truth about it, which I do now. Mothers are not always those who give birth. They are those who teach you, who shape you, and who truly nurture you.

I should have been aware of this before, noting that my own biological mother gets a two word title, to remind others that she is not a mother in my own eyes. She is unaware of this. I am afraid to tell her, because she will likely hurt herself. I have mothered her too often for me to comprehend the value of true motherhood. I am working on it now, struggling to appreciate the true mothers.

I had a teacher in school who went over the line of Teacher into Mother. When I ditched school, I went to her house, ate her food and played with her cats. I had her permission to do this. She saw a need, in a child who was so bored in class that she rarely paid attention, often beat on the other students or worked to hurt their feelings. She helped me grow past my torment so that I could help others. She is not why I tried my own hand at teaching. She is why I survived middle school. My teacher was also disabled. She told the story at the beginning of every year and if any transfer students came in.

She had not taken the medication a doctor told her she needed. She had strep throat and ignored it, and as a result the infection damaged her kidneys. She had a transplant and the side effects of the medications left her weak. She often used a wheelchair because her aging body was just not good enough. She also was known as a cruel teacher, harsh and strict.

She is not the only teacher I had who was known as either the crazy cat lady, a cruel person, or as the meanest teacher alive. Three spring to mind, all of them women. They had standards. That was it. Their classes are those I recall in first Elementary School, then Middle School, and finally High School, where I cared what I did. They are the classes where I actually did the work.

They also shaped my expectations of friendship. None of them told me I was bad for not being able to connect with people my own age. I can do that now, but, when I was young my brain was trapped between too many medications meant to control me, survivng other abuses, and dealing with a body that failed me. I also had to deal with being told nothing was wrong with me, except of course being crazy. No one wants to be friends with the crazy kid, the fat kid, the girl who doesn’t run because it dislocates her hips. No one wants to be friends with someone who is different.

I am still different. I cannot be normal. Normal is a misnomer for boring. None of my friends are normal. They are all shapes and sizes, and all are the most beautiful people I know. If I consider you my friend, it is a rare title. This does not mean I will not associate with people who are not friends, but it does not mean I actually respect those people.

I spent years mastering control of my emotions, hiding who I am. Now, I am mastering being myself. If you cannot handle the truth of my soul, you cannot be my friend. I am a treasure.I am not a burden. Are you my friend? I hope so. None of the friends I have right now have ever failed to measure up to my expectations. It is not always true that people with high standards are lonely. I am fulfilled, happy, and I truly appreciate my friendships.

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