Hidden Abuse Take Two (Trigger Warning)

Abuse is something that is running rampant in our society. I think the “right” to abuse is not just reinforced in some religions, but it is reinforced in other ways. The media often shows women getting hit as punishment, or if male and females are both under assault, the woman gets hurt worse, and it is the man’s duty to avenge her. There are very few deviations from this formula. I am writing a deviation, at least I hope so, for my own novel. I realized that I am exploring what it is to be a survivor in my writing.

I am not going to give the plot away by much, but, there is an exploration of rape, incest, and the confrontation of an abuser in my story. That is a big portion of it’s core. This is a core part of what has made me who I am. I have confronted every abuser in my life, and although it is extremely painful and has ended badly in most circumstance, I was able to show them that I know what they are.

Through this exploration of what abuse is, and my constant thoughts and warnings I have come to see that the media lies. Abuse isn’t just when you are beaten bloody. That is the most obvious abuse. That is the abuse that comes in at the end of a very long escalation. Abuse starts small.

My first abusive boyfriend actually helped me find my name. At times I feel weird answering to Kat, because he was the first to call me that. The spelling and intention is different yet the association sometimes pops up. The abuse with him was the smallest. It started over food. I have huge food issues, and have had for most of my life. He would start out with our food order. I would order something meaty and he’d look at me and say, “That will make your cholesterol high. Don’t you want a salad?” If I refused to order the salad, at first he would just shrug, but then the comments started to escalate, “Well, if you want to be a fat pig for the rest of your life fine…”

I nearly died when I started to give in. I didn’t see this as abuse. It was not as bad as what I had dealt with before, so how could it be abuse? I didn’t understand. He then began to accuse me of things, little things that made no sense to me. “You are one of the Illuminati, You are the destroyer of worlds.” I thought he’d been reading way too many comic books. He hated them but read them to try and make me feel better about him, in some ways that worked at first.

This was one of my longest relationships, I was hiding my relationship from my family per his order. After all they would surely judge me for dating a person of a different ethnicity. Before you ask, no he was not black. I have been blessed to know only gentle men of color. No single ethnic group holds the buy out on violence. Most of my abusers are men of my own color, white.

I began to miss out on time with my friends. He then started pressuring me for sex. I had decided a long time ago I want to have sex with the man I marry. For some reason this was not the same in my mind with women, I could explore them but men were too dangerous and in my mind hated pleasure with promiscuous women. I was warned that if I did not have sex with him, the world would end.

The night we broke up he hit me. I do not remember much, I had a flash back to one of the worst beatings of my life. I also reacted, I don’t remember it but when I came back to reality I had been hitting him with a frying pan. My face hurt, and he snarled at me, “I am going to rape you, kill you, and then I will have your soul forever.” Those words haunt me. He meant them. He wanted to steal my soul, because in his eyes I had too much personal power.

I called 911, he was arrested, and some of the things I found out about him were frightening. He had lied about his name, he had lied about a lot of things. He was a known serial rapist, and had killed more than one person. He went to jail, and although he is out now my fear of him is very small. I doubt he will try to find me. If he does, I know how to protect myself, and I will call the police.

Looking back, I see many warning signs of abuse. I thought these were normal for social interactions however. Any time you are not allowed to share a relationship, it is a warning sign of abuse. If you are not able to meet their friends or family, that is another sign of abuse. It is a bit harder to feel that these are significant with internet dating, but they are in the majority of cases. If you must stop seeing your friends, it is a warning sign of abuse. If you say no, and he takes that as yes? Get out of there.

There are more signs to abuse, but my brain is trying to flash back now, so I need to stop writing this piece. Abuse is not as hidden as it thinks it is. As a survivor of abuse I have dealt with varying layers, finding each time my brain accepts it as normal, until I finally found my way out of the cycle of abuse. It takes years, it takes practice. If anything hurts you, even if it might not feel wrong it is abuse.

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.

Pancakes in my Shirt

I walked out of the apartment into the rain and the car, despite being two feet from the front door seemed miles away. I burst into tears. My pain was worse than it had been in weeks. The sun was hiding and I did not want to function. After my shower earlier I realized since water makes me sick my pain might be a reaction to the chemicals in the shower. This is no comfort,but as I took another shaky step, my Person grasping me under my arms and half lifting me as I started to fall I wanted to run inside and hide in bed.

I had fought for this appointment tooth and nail, as had my doctor. I made myself move forward, clinging to the big strong arms that wrapped around me. It is cold enough that it will snow later, the sun napping as it finally acts like Winter. I curl up in the van and try to make myself eat something so that my pain pill will stay down. Two bites and I want to just die. I take the pill, I feel it slowly moving down my throat, Everything is slow today. Like molasses. I know it will be an hour before I feel any better, if the medication will work. It rarely does now.

Arriving at the hospital for my testing we find that the rain has brought out all the placard users. This hospital is very accessible, and yet we had to park in the boonies. I watch in the mirror, as I always do, for on coming traffic so that I can protect my Person. He is almost out of the van when from my blind spot, which is as big as the van anyway, a blue car speeds up nearly running him over. They would’ve hit me if I had been getting out. Pain that the rain saved me. I climb out and drag myself down the side of the van, the car blocked us in so that Person could not come to me, as was the plan. I barely fit between the cars. No apology from the rude driver, just a rude snear.

More tears. The van is six miles long, it has to be. Each tired step my legs want to give way. Why don’t they? I don’t know. I just will them to work. One more step. One more. Pull on, go forth. I barely make it to the chair, my legs giving out as I sink into the seat. Rain is pouring down, it burns like the shower. Chemicals might not be the why of the pain. It is cold, and my shelter is not up. I put the key in, nothing happens. Instead of bellowing like a Bean Sidh I take a breath, I whisper a prayer. I ask for help. We get the chair to run, it putters slowly, slowly enough that Person does not have to run. It stalls out in the door way. We aren’t there yet but the chair fails me. I sob a bit more, feeling guilt over my tears but unable to stop them.

Person hefts the chair up, five hundred pounds. Person is amazing. The chair makes it over the doorjam. A low door jam. I realize I had been being the Wicked Witch, glowering out at the world, I start humming. Dun dan duh dah dah dun dun dah dun dah dan duh… Person catches on and I let out a cackle. My pain is horrible but my mind is clearing. I must be prepared to fight. Sign in, sit down, and wait.

Waiting takes an hour, then, I have the ultrasound. Insurance won’t cover a Mammo without it. No mammogram is in the cards, says the tech. She discovers my breasts are too thick to get a clear picture. Frustration is apparent but she tries. I react to the gel. Not badly but it burns. Everything burns. Life burns today. The air burns in my chest, pain making it worse. I clean myself up and wait. No sign of anything, too much tissue. I get the mammogram.

They ask if I can stand, I try and fall. I am in my chair for the mammogram, pinched and squeezed. Denial, in my head my breasts are slightly above average. I overflow the plate. My breasts are bigger than the machine allows. It takes three to hold them in proper place to position the machine. So many pictures. An abscess bursts, have to retake a picture and clean up again. Everyone is nice, my pain receeds slowly, as the storm passes overhead. My results are given right away, after more waiting.

No sign of cancer, just scars. So many scars. My scars are clear as day, little spots and suns, but they can tell they are scars. They can match them to the flesh, and they do not look the same. I trust them. I am free of worry for at least a year. Self advocated, self preserved. Heading out again, the wicked witch is gone, but I remain. I still burn. The pain is strong, it burns my soul. I burn until the hate comes, then, I hit a bump. More tears. I smile, remembering why I am here. I won. They helped me to get what was needed.

Health is good. Still, I have pancakes in my shirt.

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.

SuperCripple VS Advocate Woman! Issue#1

Sometimes you have days that feel like everything that can go wrong, will go wrong. Other days everything goes right, even when you least expect it. Today I had a day of Advocacy. I felt compelled to advocate not once, not twice, not three times, but four times. Each atttempt at advocacy costs energy, so, I am considering taking an epic nap right now. Instead, I see this as an  opportunity to discuss advocacy once again.

I found myself waking up to the phone and I actually answered it. I am antitelephone, and since ours does not have a speaker phone option I get pain when I use it. I still felt the need to answer and found myself being told that tommarrow at nine AM I was due for my mammogram. I had some questions, and was reminded the value of questions. Here is a sort of rewrite of the conversation.

“Don’t wear any make up, powders, deoderants or parfumes. These can cause false positives.”

“Great, I have some questions for you. Do I have to lay down during the mammogram? I am concerned about positioning.”

“Uhmn, you have to stand ma’am.”

“I am a wheelchair user, what is your accomodation for this eventuality?”

“Well the technicians can hold you up?”

I felt anger at that response. I should not be forced to stand during a painful proceedure. I consider mammograms painful, due to the fact that they crush your breasts. I will find out how painful on Thursday.I took my deep breath and responded with this.

“Ma’am that is wholly unacceptable. Not only could that damage my body further but it puts me at risk for passing out. I find the notion that you can just hold me up until you are satisfied humiliating as well.”

“Please hold.”

I was put on hold for disagreeing with her, though it wasn’t for very long. I hadn’t even decided what to feel about her thrusting me into Hold Limbo. This was good, I dislike being on hold and forced to listen to cheesy instrumentals of current pop hits. I once heard an instrumental of some Eminem music. That was just weird.

“Ma’am I see here you are not over fourty. I am cancelling your Mammogram, you can just get an ultrasound.”

“No, my doctor and I discussed the need for a mammogram. My doctor knows what I need, and you are not a doctor. You are a receptionist. It is your duty to follow the orders given to you by doctors. You can cancel the appointment, but, I would like the number for the head of radiology please.”

I was wide awake now, and having dreamed last night of a future when I was fighting for the rights of others on a National Scale, I felt inspired. In my dream I was the next Civil Rights Leader for the disabled community. My voice was the voice that pushed for training for the police, that pushed and pushed until finally equality came. It was a good dream and pushed me into action. I was put on hold again. She came back and said something I found shocking.

“I don’t have the head of radiology for our hospital.” What? Why not?! Instead I took a breath and asked, “Then, is there someone else I can talk to?” She was quiet for a moment then said, “I think the Women’s Hospital can accomodate your need.” Not only is the Women’s Hospital my neighbor, but, I love that place. When I need an ER I can get in, almost immediately. She did give me the number for the head of Radiology for the Women’s hospital.

I called and made my appointment, and then I left a voicemail for the woman who runs radiology, expressing my concerns and my challenges with the Mammogram. I wasn’t even ready to drag myself out of the bed yet. This takes time and my body wakes up paralyzed. She called back before I had even managed to scoot to the edge of the bed. We’re meeting on Thursday to discuss accessibility with in the confines of her hospital, and to discuss a plan to raise awareness for other hospitals so that women can get their mammograms. She agreed with my statement that a woman should not be denied a medically necessary and preventative screening based on her ability.

On Thursday I will be in a nonchair, but I will not be standing and she promised options for adjustability in seating to protect my body from the risk of fainting. There will also be extra nursing staff incase of the inability to accomodate that. This is challenging, at times my wheelchair isn’t adaptable enough. This was a victory. I negotiated for what I needed and am in return going to fulfill a need for others.

After getting dressed I was going to grab Sprite to take her with me for my speech, because I miss her working and she has finally begun to regain her Meow. She had a temperature. Instead of letting her come out, I had to let her stay in. This either was helpful or harmful, a mixture of the two most likely. Right now she is so glad I am home, that she is curled up on my knees with a little kitten grin. I need some blood work done, and after fasting and making myself drink only water (makes me queasy) I went for it.

My person unloaded me and my chair, and while he hefted the ramp back into the car I went on my merry way to sign in, that way I wouldn’t have to wait. I did not make it in the door. The curb cut was blocked off by a car, a woman sitting inside waiting for someone. I considered my options and decided for passive protest, waiting to educate the miserable soul who could be so inconsiderate. Out came a man who wore a hat declaring he fought in World War Two. He is the first veteran I have not thanked for their service to this country. I feel slight guilt at that, but only in the form that I could not undermine my own rights.

This converastion was full of his hatred of the disabled. His wife had just broken her leg and couldn’t walk to the car. I understand needing to use the curb cut for a chair. Instead of making sure anyone else who might be in a chair could use the curb cut and go inside, he felt the need to take fifteen minutes of my time with his selfishness. He felt the need to make it appear that it is my fault I cannot go over a curb, and that because he fought in the war he gets a free pass. I did my best to keep a calm tone, and success was had. He was not happy when he left, though I did try to accomodate his need to enjoy his able bodied superiority, his white priviledge and his manliness. I did not want to upset him, I wanted to educate. Here is my conversation summary there.

Him: “Move. I can’t pull forward with you there.”

Another car had come up behind him after I had made myself cozy blocking him effectively in his spot.

“Sir, you are breaking the law. You left your car illegally parked. blocking me in the street. Not only did this endanger my saftey but it is a federal crime. ” I then started to move out of his way.

“So what? I needed to put her wheelchair back inside. She broke her leg.”

“Sir, there is a parking spot less than three feet from us. You should have used it. Next time, please make certain that you are not denying persons access to the emergency room.” The ER is right across from the medical lab. I found myself at that moment wondering if today was ADA Awareness for the folks at the Women’s Hospital courtesy of yours truly.

“Well I fought in World War Two.” That part made me want to snarl at him about rights, priviledge and why he fought. I wanted angry discourse. Instead I took a deep breath and responded with this.

“I do appreciate my freedom, but, that does not give you the right to violate the federal law. My civil rights include access to this hospital.” I was out of the way of his car now, and he had begun to snarl. I lowered my voice, just a bit, “You should be aware that I could call the police to have them enforce the Americans with Disabilities act, having you fined. Instead I chose to make you aware of the law. ”

“No one reads the ADA anyway, you’re the only wheelchair person who has.” This man was using the ADA for his wife, so that she could have a reasonable accomodation of transport to their car. The ADA protects his right to medical care for service related disability, as do other non ADA laws.

“Sir, I am afraid you are misinformed. Most disabled people discover the value of knowing their rights, so that when people discriminate they can educate. You should try reading the ADA, you might be surprised at how much it effects you.”

He finally got in his car and snarled at me, “No one cares about you gimps.” It was difficult to not give him a rude gesture. Instead, I smiled and said, “Sir, I am not a gimp. I am merely wanting to go and get a blood draw. I need my cholesterol checked.” He turned purple. When people turn purple I always want to see if a purple people eater is around. This makes me relax, internal laughter at their overreaction feels good. “Have a nice day sir, if I see you doing this again I will call the police so that you can pay the fines. The minimum, I believe is about $500.”

I was reacting to my sun exposure at this point. My right ear was throbbing, as it had been for some time, and my back ached. I signed in for my blood draw, then began to see about getting my sleeves up. My good arm for blood had developed a giant sore right over the spot where the needle had to go. I have two spots to draw blood, one in each arm. Everywhere else is not an option. This meant that even the small children’s needles aka Butterfly Needles were not only necessary but any deviation could result in my bleeding. I have the hemophiliac gene and often display symptoms, though, my doctors assure me this is not true hemophelia. I agree with that diagnosis as I do not always bruise easily. At times I am injured and no bruises appear in my flesh.

My next and third for the Women’s Hospital opportunity to advocate came as soon as I went back with the tech. I reminded her of my need for a butterfly needle, and she went off to gladly accomodate me. She was great, and it turns out a med student. First, I had to argue with her teacher about the butterfly. They apparently keep them locked up now, to cut costs. This means if she is not there, a person needing a butterfly cannot get their blood drawn.

“Ma’am my student tells me you are requesting the butterfly needle. We reserve those only for people who actually need them.”

“Without the use of the butterfly needle I bleed enough to require hospitalization. Also, most of the time I then require six or seven attempts at penetration.”

“Are you a hemophiliac? You don’t look like a hemophiliac.”

Slow deep breaths. I had left my person out in the waiting room. I may be terrified of needles but I am not about to have him hold my hand when I can control my terror.  “That is discriminatory. Not only do I suffer from excessive bleeding, as I stated to your technician, but, declaritive statements that try to diagnose ability based on appearance are disabling to this hospital.”

She made a face and said, “I’ll call the head of security and have him escort you out.” Disagreement means I cannot have my blood test? I put on my inner Mule and let my stubbornness guide me.

“I’ll be contacting my local ACLU to sue this hospital. In this economy this hurts more than just you. I do not want to have to sue, and yet, people like you perpetuate the stereotypes of disability. Calling security merely proves your need to dominate the wheelchair user who knows her body. You will provide her with the butterfly needle, you will also apologize for your bigotry. I do not care if you actually mean it, but, if you want to discriminate, I will fight you. I will fight you so hard that you memorize the ADA just to survive the onslaught. I am just one woman, who has made a reasonable request. I have a speech to give in the next hour, and I would rather do that than bleed out in your hospital over your under educated notions.”

This was a bit harsh, but, being straight out nice was not working. I said this mostly tonelessly, trying to not let my anger win. Yes, I threatened to take legal action. This is my right. I have the right to sue for action when I am being discriminated against, denied proper medical care, and I also know the power of my words. She apologized, gave the tech the b utterfly needle and walked a few feet away to watch the student work. Her apology was a muttered thing that I barely heard, but, she relented. Before I tell you about my educational moment with the tech, I will say this. She stopped me on my way out and asked me where she could read the American’s With Disabilities Act. I wrote out several URLs for her. She will not make the same mistake again, especially as she is now educating herself.

The tech was curious. She asked me how I knew what to say and do. She also discovered that aloe allergies exist. I watched her reaching for the green gloves, the name on the box actually clear enough for me to read.

Me “Do those contain aloe? I am allergic to it.”

She grabbed another nonlatex glove, “Really? Sorry about that. I never considered allergies beyond latex. Do you have a lot of allergies?”

“Yes, I have enough that I have to be on constant guard against them.”

She nodded then and asked, “So,  how did you learn about the ADA?”

“I was told I was healthy as a child, but crazy. I was told I hurt myself because of the sores from one of my genetic conditions, supposedly rare. Hospitalization trained me to try and hide everything wrong with me. As an adult this challenged me to accept my diagnosises. The doctors had been wrong. I was treated for hypochondria.”

The H word caused her to roll her eyes, “So, you really didn’t need the butterfly then.”

“No, I do. I have medical documentation for the need. Hypochondria does not exist.”

“Ten percent of the US population has it.”

This made me smile. I love the statistics game sometimes, it can be an easy win.

“Okay, how many people have hard to diagnose, rare conditions such as Ehlers-Danlos Syndrom or Fybromyalgia?”

“Uh 30%.”

“So, with these numbers increasing daily, people suffering for years with their invisible illnesses and the like, what would you guess the percentage to be for undiagnosed illness?”

“40%.”

“Well, if Hypochondria is in just ten percent of the population, then, that covers your instances of hypochondria. It does not exist. I am in this wheelchair because my pain was not allowed to exist for so long, that my invisible illnesses became visible.” She was quiet, and finished the draw before she said.

“So, what other disorders of the mind aren’t real?”

I shrugged then, and answered honestly, “I do not know, but, statistics cannot accurately guide you or any other medical profession. They can only analyze the data that is present.”

This was the fourth chance to advocate. I am not counting the usual advocacy for safe food at fast food resteraunts. Dairy Queen had an employee who didn’t comprehend about no bread and no pickles. Her manager is going to read the new ADA ruling, I gave her a heads up that more people with food requirements will venture out now, and she should be prepared because when her employees tell someone to just eat paper and ruin their food, it will hurt her. Some advocacy and education comes from the strangest places.

I made it in time for my speech, the first speaker, Don Dubois, is an advocate for Lupus. He gave an educational seminar on how to negotiate. I learned from this, and had some of my own self discoveries reenforced. I picked up new techniques I will try, and, I got to see a great speaker. His disability melted away as he worked the room.

My speech, Wordabration was hard. I admitted for the first time outloud to a nonmedical group that I have suffered abuse. I admitted the challenges behind why, and honored the words that lead me to my freedom. I explained my wordabration, and recieved a standing ovation for my speech. I am so happy to return to my Toastmasters Family, that I used the words. I even remembered my closing.

I never use notes for speeches, I panic if I forget something, and then I ruin my flow. Everything felt like a scene from a movie. Everything felt wonderful, safe, and I was awarded the best speaker award for this week. To me, for my first speech in six years, this is a great honor. I am going to evaluate a speech next week and volunteered myself to work more speech contests.

I came home to a half dozen voice mail messages, and ran out of advocatability today. I had to have my Person make some calls for me. Walgreens automated system had gone insane, trying to deny the prescriptions, deleting one, and filling one.I also had my right earlobe explode. Apparently, since mid December when I last wore earrings, I had a growing abcess. It hurt, and now I have five holes in one earlobe. I am certain I just lost the ability to wear earrings.

This is a fairly average day, when I think on it. Every chance to educate must be taken. I feel at times like the world expects me to be SuperCripple, flying my way around their bigotry. Instead, I aim for Advocate Woman, Advocating her way to JUSTICE!

Wordabration 2009

I am a word junkie. I cannot escape them, and they are what I see the world in. I do not see you as colored flesh blobs, I see you as descriptions in text of colored flesh blobs. We cannot have lyrical music without words, speeches, television, even silent films needed words to describe their content. Blogs especially are made of words.

Tomorrow I am giving a speech called Wordabration, it is a speech to introduce me to the Toastmasters’ group. Well, I am going to put words into a context of my existence. I cannot give you a pre-written speech to read, so, when the video is up, I will post it in the blog. In the mean time I wanted to share this video, it uses words to show the entire glut of change we face. Skynet is coming, Bluetooth is the key.

If you know what the music is, I’d love to. It stuck in my head and has me all tingly, with words. Why are words so important? As a culture our language is what gives us expression, and although not all of the words in a language are positive, they still are the keys to  understanding an entire culture. Without the Rosetta stone our understanding of the ancient world would be not even a tenth of what it is today.

The language of a legal document, or the language used when you are mirandized if you are arrested matters. Language is the single most important part of a culture. Language is used to discriminate too, if you do not have a mastery of the language then people presume you are stupid.

I love words. I truly do. Wordabrate with me. What is your favorite word? Mine is Onomatopoeia, a word describing sound. Sounds and words are the same, that is merely proof.

I woke up today ready to resume writing my novel, and, so full of word steam I felt as if I had exploded. I broached new territory for me,describing adult situations in my book. I decided to write the first draft without being certain who my audience was, and today I woke up knowing my audience. The power of my words grows exponentially. I can hardly wait to edit this puppy!

By the time I go agent shopping, I doubt my book will even resemble the mess it is now. I am showing not telling, there are gaping plot holes, inconsistencies in names but that is what a first draft is for. All of the variations of my characters have to melt down into a single and final variation. My Pirate dragon warrior princess has to become a person, instead of a pile of words, while being in literary form. Only words can manage that.

I do not cry over movies often, but, even comic books can make me weep. Words are the most powerful weapons in the world. They start wars, they stop wars. They make people rich and poor. They give the perception of rights, and they can even train those who hear them to believe certain things. Words are used to label people, sometimes to their betterment and most often to their detriment.

Words uplift, they demean, but most of all they are just words. Wordabration means, celebrating words. You can participate in March, my month of Wordabration, by reading the dictionary, read just one page a week, learn a new word, or even just acknowledging what words have given you. They bring you this blog, your news, even if you get it online or from Jon Stewart, words do that for you.

So, here is a celebratory blah blah blah. Let’s go Wordabrate!

Ana Phalaxis- Super Villain!

I made a mistake. I ignored symptoms that could have killed me last week, during an allergic reaction. I have become so used to stifling my own needs through the years of surviving and it nearly killed me. I also have a limited education by my medical staff on how to handle my reactions, most of them writing off my lists of allergies as an attempt to get out of eating food I do not like.

I am not a hypochondriac. I was diagnosed as one when I was a child, because invisible illnesses are very complicated and my mother never told new doctors about the existing diagnoses she had. I have multiple diagnoses that were remade as adults, and only then did she actually believe that these disorders could effect my life.

I was sent to a mental ward for being in pain. This sounds preposterous doesn’t it? Your child is suffering, so, you have her locked up because it must be all in her head. You have her trained in how to lie to herself, so that she will take herself seriously.

I do not personally believe Hypochondria exists. Part of what makes the diagnosis work is that you supposedly get something out of your claims of pain. I never did. I remember telling my mother when my hands hurt, visibly swollen knuckles that would barely bend, and I was told to stop being lazy. This denial and imprisonment escalated changes in my fragile mind, which caused more issues.

Even now, as an adult, I can hardly acknowledge when I need help. I have a caregiver who I still forget to ask to bend and pick things up. I am physically unable to bend over without fainting, yet, I tell myself to not bother him. He is paid for this, which has helped me begin the process of healing, yet, I still hurt myself out of habit.

I did make it do the doctor in time, it took me three days. Three days of being barely able to swallow or breathe, and three days of repeat attacks without exposure. I also could not eat. Then, and only then did I seek medical help. The last time I went to the ER for an allergic reaction was when I was very small, usually I self medicate yet, I also know just how stupid this is.

This time, in the ER I had an experience that woke me up a little. I had a doctor who not only took at least ten minutes of inspecting my body and asking questions about my needs, but, he never once denied that I have severe allergies. Instead, he prescribed the necessary medication to help me heal. He also suggested I try and see an allergist, because the severity of my reaction without eating the food is rare. Most people with food allergies actually have to at least put the food in their mouth or to physically contact the substance.

I have documentation of my reactions changes, and I do not doubt that my primary care physician will send me to an allergist but I do believe that this reaction will change the level of care I receive. Last time I went to an allergist they gave me the blood and skin prick tests, yet they claimed that I did not react to either. Instead of telling me that I do not have allergies, I was told they were merely minor, and nothing to worry about. They took away the epipen, despite my having gone into anaphalactic shock repeatedly in my life. Not once, not twice, but over 20 documented times.

I am only twenty four, and my body rejects so much but, my allergies are not severe? This confused me, yet I did my best to follow orders, though, the doctor turned out to be wrong. There are other tests they could perform to check for allergies, yet, I am hoping this time all it takes is my handing over a list of the foods I react to.

I am still struggling to breathe today, but, I can think once again. My throat is still visibly swollen, but my inhaler for asthma is finally making a difference and I can feel the air in my lungs. The doctors are worried I will develop pneumonia now, though, because my lungs shut down for so long without treatment and even when I went in to see the doctor my heart was responding to the reaction.

I did spend the last few days reading up about allergies, reeducating myself, reinforcing my value and the value of my body and it’s needs. I need to protect myself, I need to love myself, and I need to teach the people around me how to identify anaphalaxis.

Until this experience as an adult, aware that it is not all in my head, I have always thought anaphalaxis meant I had to go to a doctor to survive. My thoughts were wrong. Some people survive anaphalaxis without medical care, though the extreme nature of the reaction does make this often true, there are some reactions that are still Anaphalaxis that do not kill.

In all of the times I have known about being in Anaphalactic shock I did seek doctor’s care, but, the times I have dealt with the symptoms of an attack, the times I have felt my throat starting to swell, my head getting light, and the times that my hives have burned through me, causing fevers and chills? I have no idea how many times I have dealt with that.

I am going to write an educational program with my doctors’ input to teach people about allergies, or I am going to find an existing one and take part in educating myself and others. Education can save myself, and it might make it easier for me to ask for accommodation with my allergies.

I do not want to spend the rest of my life in the apartment, I do not want to have to hide anymore. I have stopped attending too much of life’s fun parts and I miss it.