Post Traumatic Stress Disorder and Advocacy (Trigger Warning)

In conversation with one of my young friends I had a revelation. This was about thirty seconds ago. Sometimes advocating triggers flashbacks while I am trying to function. My mind lept then to other people who have to self advocate through PTSD symptoms. It isn’t always a flash back. If you do not have PTSD it might be harder for you to understand being jerked around by past trauma. Therefore I am going to explain, and this is why there is a trigger warning on this post. Sometimes reading about PTSD or other issue related things can trigger people.

This is not from the DSM (Diagnostic Manual thingy) but is from my experience. I may leave things out that apply to you or tell you things that don’t. The problem with labels is they are often not enough to truly explain what something means. Lets say someone shoots a gun. My first impulse is to be very still, not breathing, and praying that my father won’t make the shot. Even typing that sentence my head went into the land of fuzz and my chest is tight. I am taking slow breaths to focus and clear my mind. The trigger is not always a gun but just a loud pop. My brain is stuck on certain points of the abuse I suffered, it has a programmed loop that it likes to play. I have warning symptoms for my flashbacks now, and can often circumvent them.

My reality is in jeopardy from these loops. the weakest symptom is a tingle, intense fear, sometimes I start randomly bleeding. Why do I bleed? One theory a psychologist offered is somatic symptomalogy. Basically my body remembers, and it reacts so strongly to what my brain signals, that it thinks it is injured. This adds to the pain I feel. The pain from invisible injuries is far from phantom. I feel it. The next step after that is the sensation that I am floating, I disassociate and can see the entire world, but I am not connected to it. Usually I then go back in time. I see and feel at the same time, from multiple vantage points my father with his brand new gun, me and my siblings on the couch. I feel the cold metal of the gun pressing against my forehead. My nose stings with the tears I cannot shed.

The loud bang comes, I feel the heat of the bullet, my skin is burned by muzzle flash and I feel a horrible pain as the bullet grazes my temple. I don’t move. I don’t scream. I just stare up into that black hole, smoke pouring out of it and avoid looking into my father’s eyes, knowing he is going to be angry that he missed. I hear every word he screams again, how worthless I am, how I should be dead and must have moved. My sister starts to scream, my brother too but I can’t move. I look into his eyes and I see the blackness.

I still do not remember what happens next, though I have been told he decided to shoot at my sister, but I pushed her aside. I just know he tried to shoot his children, sitting on a couch that smelled like pee, and nearly killed his neighbor because the bullet went off. The cops were called but I took the blame. I said I was playing with his gun when it went off. I lied, to survive.

When I come back to myself I always want to vomit. Instead I focus on breathing. If the nausea is really bad I will take some Rolaids. Sometimes now, after years of effort, I let myself cry. Usually I manage a tear but my brain has yet to grasp the concept of tears. If I am not at home, it is worse to recover. At home I control my environment, I have a bed to curl up in, two soft fluffy cats, and my Person can go elsewhere more easily giving me the time I need to recover.

When I am advocating and flash back, I never know what to do. I try different things, and usually they work but the vulnerability can be debilitating. I flashed back my first time having to seriously advocate to that scene. That is why I chose to relate it to try and explain what PTSD is like. I wish I had simpler words but none can encapsulate just how much there is to it. Sometimes the flashes are different, sometimes I am still an adult but I am trapped, it is worse in some ways because I still feel the pain but I am completely aware that my world has vanished. I am never certain if I am going to hurt someone. I have before, but it has been a long time.

That first taste of advocacy was so bitter. The cops came, and one fondled his gun and my brain shut down. I was afraid, in pain and exhausted. I was being yelled at and deprived of my prescription because I needed my service animal. The cops even saw Sprite follow her training. When I flash she has three tasks, beyond her instinct to comfort me. First, she signals to my Person for help. Sometimes a conversation can end it. So she chirruped at the person of the day, and I had to form the words, “I need you to deal with them for me. I can’t.” Then, she helps me to sit. I had to wait fifteen minutes for a chair, I wanted to scream at them but I tried to stay calm. I was hyperventilating, they took this as my being dramatic. Then, she moves to my shoulder. Her instinct is to sit on my chest, but she might get flung there, I do not handle pressure on my chest well even when not panicking or flashing. Her instincts tell her to purr, to rub with just her face against mine. This grounds me.

The police threatened to arrest me if I did not leave the facility. I knew enough to know they couldn’t but they refused to acknowledge that I had rights. I couldn’t fight, but I had to. I chose then to repeat the law over and over. I couldn’t think, I couldn’t see their real faces for half the time. All I saw was my father and his eyes that reflected no light.

What can you do if you have PTSD and are an advocate? Here is the how to portion.

Step 1. Before you get to the point of advocating, have a support structure. This is a difficult process, because not every person can truly understand what it is to lose your reality. You need to have someone you trust availible, at least to call.

Step 2. If you have medications used to treat the symptoms of your PTSD in an emergency make sure to carry them with you, to keep a back up dose with your support person, and to keep your doctors number handy.

Step 3. Create a kit of items that help forestall your flashbacks. Nothing works for me beyond my cat. I can give her the signal she is trained for when i feel the warnings coming and ground. This is all I have right now, beyond my Person. No meds, just those two.

Step 4. Remember to breathe. Sometimes if you focus on just breathing you can help yourself.

Step 5. If you flash back during advocacy, try and focus on the responses that do not match the memory. This has worked for others, pulling them out.

Step 6. Advocate anyway. I did get the illegal policy over turned at the Pharmacy where I was threatened with arrest. I had to fight for a long time to do it, but, they relented. It is worth it even though it you might feel endangered or might BE endangered by your flashbacks.

Step 7. If you have to, stop. This opposes Step 6. Not every incident can be worked through. You might need to call your therapist, you might need to let your support person advocate for you. This is not a failing, this is merely the team network that advocacy should be.

I am glad to write this how to. I never considered how important it could be, but, in my mind my broken back, my asthma, and my failing eyes are not my most dangerous disability. The worst disability I have is PTSD. At times during flashbacks I have hurt myself, my friends, and reliving the painful memories can also cost me emotional, physical, or mental progress.

Keep in mind the time you are most fragile is just after a flash back. Some people can be triggered more easily, often it is easier to react in rage. Do not minimize your pain either. It is okay to cry, scream, and sometimes to just walk away.

I have done all of the above. Not every incident with advocating will cause a flashback either. Most of my time advocating I am left with memories of victory. My first taste of advocacy is as sweet as it is bitter, because I still succeeded, despite my unabiding terror of these men. My greatest cause was also revealed to me. I am actively fighting to get the local police trained in how to deal with enforcing the ADA. I want my rights protected, I do not want to fear being put in jail, dumped out of my wheelchair and my service animal being put into Animal Control’s care.

That was the threat, and so often is. My heart goes out to any other advocates who suffer from PTSD. I know each person’s PTSD is varied, some may not flash back, some might just panic. Others might not be able to stop their flashes. You can still advocate. Just prepare yourself as best you can.

The Cripocalypse (Trigger Warning)

I just woke up, two hours earlier than normal and I have had a vision. A vision of what the privileged folk who refuse to see me as human might see. In truth I was thinking about my father, and how he died. I then realized he suffered for over a year with a bad heart, which means I really need to be careful and have mine checked. I will. My doctor,w hen I tell her how he died will step right up and lob referrals out into space if necessary. My father was one of the most evil persons I ever met. His level of hatred wasn’t just his children or wife, but every man, woman, and child of color, or who was independent, but especially those that over lapped. He told me often about how disabilities worked. None of it was true, and thankfully I discarded his notions before my own disabilities began to force their way to discovery.

The Cripocalypse:
It begins with one, one gimp who refuses to walk. They are just lazy you see but laziness catches like disease. Soon his children refuse to walk. Then they begin to use wheelchairs. Sure some folk might actually need them, like the veterans who let the enemy blow off their legs. After that, come the walkers, they will walk but not if they can’t lean on something. Can these people be more lazy? Not only are they lazy but all of the cripples are mexican or black. You don’t see many white cripples, and if you do they had sex with a (insert racial expletive) cripple and caught it. That’s right, wheelchairs are contagious. Someday, every man will be in a wheelchair, unable to move his body because we didn’t kill the damned cripples.

Yes, he was a bastard. I once made friends with a girl in his apartment, after he and my mother split but before the divorce. He lived there a year before he decided to see who I was playing with when I should have been cleaning and making his dinner. I was only five, but, I was a woman and therefore I was to stay in the house like his personal slave. This girl, I think her name was Jasmin, to me was absolutely wonderful. We played with her dolls, her parents did not approve of Barbie and her stereotypes. In fact her father was the person who defined that word for me. I thought it meant something as innocent as having a newer stereo and an older one.

They even fed me most of the time, for when it was Visitation Time my father made sure to either not show up, or to use my body as he wished, then discard me like trash for the rest of the time. Jasmin didn’t mind that I was afraid of her father at first, she thought it was funny until he explained it was sad. These people were the most accepting people I had ever met. The only truely accepting people. Jasmin and I were playing in the stairwell one day when he woke up, dkscovered I had made pancakes that had gone cold and were slightly burned, and came out to punish me for being five and not being able to cook the food he liked.

I will not describe his physical assault, but I was not his only victim. This was the first time I ran from him. I ran to protect my friend, as he screamed racial slurs. You see Jasmin is black. I have no idea where she is now, that was the last time I saw her, due to my father’s violence against her family. I thought she was beautiful, and I wished my skin was dark. I am as pale as she was dark. She had the darkest skin I have ever seen, it was also luminescent, like looking at a person made of obsidian. She gave me my very first hug. That was how we met.

I was crying in the stairwell, and she and her father came home. She came up and just hugged me. Then we went to play. I do miss the innocence of youth. There was still innocence you see. There were stolen moments of absolute joy, before my father found out. When he attacked me and my friend, we escaped him. I knew I had to go back but I was willing to die for my friend. Her father wasn’t home, we were both alone but we dove through that apartment door, they were our neighbors, closed it, locked it and listened to him scream about how I was going to become a black woman.

Jasmin was also the first person to show concern over bruises. Despite my conditions I do not bruise easily, I never have. My father had also had enough other children to manage beating on us without bruising as much, and rarely where someone might see. He was calculating in his abuse, to make it harder for us to tell anyone. The worst abusers are the most talented at that. The last time I saw Jasmin, I was so afraid that my father would kill me. I even told her father that. I wish I had been smart enough to take his offer up. He offered to let me stay with him until my mother came.

We did try to call her, but, she was busy. My older siblings had refused to stay with Steve, my biological father’s first name, and I was alone except my friend. The police did come, yet they ignored the fact that even his daughter was telling them he’d tried to hurt her friend. This was a defining moment in my perceptions, when the police told Jasmin and her father, to send me back. They stated the Department of Child Services would be out to inspect his care of Jasmin, but surely my father was not really hurting me. They targeted them because of their color.

Often that is the day when I see my innocence starting to disappear. I had so little chance to be a child, but with great joy I remember every moment I had with Jasmin. I remember the utter innocence to be had, before I was taught to hate. It never took. Maybe it is living in New Mexico, where the Latin@ presence is so prevelant, maybe it is the fact that Jasmin and her father cared, or perhaps it is the effort I have put into bettering myself, rejecting the lessons of a false father.

The Cripocalypse is false. I know my disabilities are contagious via genetics. If I could have one last moment to look him in the eye again, I know what I would say. “Steve, I do not respect you. How can I respect someone so close minded as to abuse their children for existing? How can I want you to live, I really was hoping you would die sooner to better the world. You hurt me, and I know you will never care. You just feared being alone when you died, you feared it and none of your children will care when it happens. I am a cripple, who likes persons of color, who likes anyone she meets until they prove they are not worthy of it. You taught me horrible things, to steal, to lie, and to beat. I reject you en masse.”

He is not the only bigot who fears the Cripocalypse. So often people try to hide the disabled, the Persons of color, and yet, isn’t color the most important part of a painting? Art screams for diversity, and the privileged persons always claim to love it. I too wonder, how many more people who hate have died, or will die in a state they most fear?

Does Super cripple help forestall the Cripocalypse?

Z slashed through a shirt to reveal Superman or Supergirl's uniform

Z slashed through a shirt to reveal Superman or Supergirl's uniform

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.

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!

Just Die Already

Tonight while shopping for clothing at the Thrift Store I had two experiences, one uplifting the other utterly depressing. Lets start with the depressing one, that way we can end our time together on a happy note. I was told to just die.

I was struggling to check the size of this really sexy green dress, alas it was too small or I would own said sexy green dress. I asked for help from the employee nearest me and while she was great, the hispanic man sitting on a couch chewing his cud looked up and said, “You can’t do it yourself? Just give up and die.” He said this without blinking and just resumed staring off into space. The poor employee fled, she wasn’t sure how to handle this and likely could tell I was about to go KABOOM. Few things make me want to yell, but being devalued as a person who should just die? I had to ask why.

“Why would you say that?”
“Life ain’t worth living if you can’t walk. You have to be sad, so just give in and die.”
I ranted, in the store, and half expected my significant other to come and ask why I was so pissed. I did not yell, or he would have. I haven’t told him yet either. I want to make sure the man is gone so he doesn’t get beaten down by my man.

How do you respond when someone devalues you to the point of declaring that you should be dead? I get angry. I told him this. My legs may fail, but, I have the energy to shop, sing, and actually contribute to society because of my wheelchair. I am happy, I have great sex, and every reason to live that he does, maybe more. I managed to not cuss, trying to remind myself I have to set an example.

I also asked this man if he had forgotten about Hitler or just wanted to sound like his best friend. I am not stupid, I am not weak. I am full of fire and the spice of life. I am a person. I have every right to live, just as the young man who followed me around that store with Downs Syndrome does. I asked the man too, why he was sitting on the couch wasting aisle space, since I might need to roll past him eventually. “My feet are tired.” That was when I smiled coldly, and snapped out, “Mine aren’t. I think I am going to go and look at shoes, since mine won’t get worn out. Sorry your feet are tired and you want to die, but I can go eight miles per hour on this thing, I can go back to the future.” I went then and found my caregiver.

Could I have handled that better? Probably. I have issues with being told to just die. My father spent my entire childhood making sure I thought death was the easy way out. I am also feeling a bit depressed due to the acceptance stages of new disability and a side effect of wanting to confront my mother, but not being able to do so. I am aware eventually she will read my blog, but I plan to talk to her before I give her the URL.

Some of you may comment that the disabled having nothing to do with Hitler. Sorry, but it wasn’t just the Jews who were killed. Disabled people, persons who were not just white but of mixed race. Disabled people, persons with even manic depression, and sometimes someone who pissed the Reich off were all labelled. One of the many labels I would’ve worn in the concentration camp was Blod or German for stupid. A black square with white letters. I never will forget, neither should you. Yes, genocide is horrible, but, trying to eradicate disability or assuming that all disabled people are second class citizens? This is just as horrid. I am afraid of the future, I am afraid that assisted suicide will become legal, and that more pressure will be put on the disabled.

This happened after my uplifting moment, but I am excited about that. I was in another store, hanging on tightly to this high fashion top that was going to run me four dollars. It’s in style right now, my size, four dollars, and not puce! I had to have it. My rental scooter started bucking like a Bronco. I lost total control over it and almost ran through a window. A man in a wheelchair blocked my exit point with his body, thankfully neither of us was hurt. I looked up and I recognized him from the Veteran’s Shelter I used to volunteer at. This shelter is just for the disabled veteran. He has grown in health and was looking so happy. He did not recognize me. I thanked him for his service to our country and for saving me.

He expressed gratitude at my understanding the sacrifice. He became a para when he took a bullet in his spine for this country. He expressed his frustration at seeing any other person, especially a young person in a chair. We talked, and I told him I sacrificed my spine for children. We communed in the honor of life itself. He told me it was good to see someone who wasn’t down about their chair. He’s in a nursing home because he cannot care for himself and although home health care would likely be enough, Medicare denied him this. We exchanged information, and I hope to help him go home again. He fought so hard before for his home. I think he recognized my name, but, that does not matter. What matters is that he exuded strength, saftey, and honor.

He honored me by risking pain to protect me. I am grateful for that, how can I begrudge someone a sacrifice? I focused on this man when I wanted to lose my temper with the second fellow. I know better than to yell, but, it would have felt good. There are so many times when I am told I am a second class citizen. I am first class. My significant other tells me he loves me because I am a Lady, not just a woman, but a Lady of the highest degree. He reminds me why I must maintain my dignity, and he does not see it as shameful for me to cry.

I am going to live a long time. I must, because I have so much to offer this world. Bicycles are much like wheelchairs too. They have two wheels, they ambulate for you, leading you towards a destination. The only difference is wheelchairs come inside and are differently shaped. You say our tires are dirty, I say so are your shoes. You say we make the aisles wide, an inconvenience for you who wants to over stuff your shop. I say, aesthetics. You say I am a burden to society because I am currently not working. I say society and it’s bigotry is a burden to me. I should not be assaulted when I go out because of my wheelchair.

Today is also the first time in a long time I looked at clothing that will show off my magnificent bosom. I have more than ample cleavage, and, I am done hiding every bit of it just to comfort people who expect every woman to be shaped like a hanger.

I am done with self slut shaming, and I am done with conforming to stereotypical fatty clothing. I am fat, but, I am also gorgeous. How can a person who is happy be anything else?

Do you deserve to live? I agree, you definitely do. Lets live on together in our high fashion and accessible world.

Poverty and Cultural Hate

I grew up hating my state. It took me a long time to see the good points of living here, especially when the only things that seemed to come up were Bad. Growing up in a myriad of small towns I was never an insider, and I did develope a good deal of hatred for my Hispanic neighbors. I hated the rednecks, the popular girls, I hated the girls who put out and the other outsiders who were still virgins. Eventually I was the only virgin in my school, and the pressure was unbearable. On top of that I had to hide self loathing. My family sucked, as far as I was concerned. We were poor and white. That meant we were just trash and no one wants trash.

Today I found out about this. Cheese Sandwiches do not accommodate potential allergies for these children, and they do humiliate. I was humiliated often by my peers and the adults in my life as a child. I never got to eat the school lunches because they made me sick but we could not afford anything else. I can taste my own cheese sandwiches, the ones I ate during my tenure in this same school system.

I also know how APS (Albuquerque Public Schools) is going to handle the repercussions of media attention. They will instead offer Peanut Butter Sandwiches. That is how they handled it when I was a student there. This is not a new policy, this is instead just a new excuse to deprive.

New Mexico has a fundamental hatred of it’s children. I have yet to see much proof to the contrary, when, the school systems are cut first, then public health. Anything that benefits the children lacks security. I do wonder, when we are of the age of grandparents, wizened and realizing our errors, if it will be the lack of care our children show us that makes us stand up and say “Sorry.”

The only things I really gained from my APS Education are an overwhelming sense of regret, and a GED. I am one of the infamous drop outs. I was always hungry, I was rarely reached out to by my teachers, and I am aware that the problem has merely gotten worse. The hunger I felt masked any outreach that was there. How can we expect these kids to learn when we starve their bodies? Some might not even get to eat at home. School might be the one meal they get a day.

So much for the economic stimulus package. Now we will have another generation of hate filled youth. Few will wind up okay, those kids who are singled out now are at greater risk for mental difficulties. They might have easy access to guns too. Albuquerque has a healthy gang community, and, improper diet will cause more drop outs.

Children need to feel loved. They need to feel like the adults want their success. I never felt that. In retrospect I can see it, but, it was so rare to have anyone wanting me to succeed that it never made a big enough impact. The impact that good people are trying to have is being deadened with this stupidity.

How can I help these kids? I am not sure. I do know that the public being made aware is a step. Maybe Bill Gates will remember being in APS and will provide the funding for food. He still has a charity right? Oh, top it off with the local coverage. There is so little it didn’t even make the news advertisements, instead they talked about the Governor being busy. I found out about this on my favored Feminist Blog, Womanist Musings. The local news has not aired yet, but will they even cover this topic? they did not mention it yesterday either.

Are our children truly this disposable? I look forward to the baby boomers joining me on the caregiver train. This generation which we just sentenced to starvation will be theirs. Perhaps they will find that anger in youth begets anger in the adult world. I am not wishing them harm, but, I am wishing that the adults and people with the power to change the future see that the future is in our children. They will someday make the policies that shape who gets to eat, and they will take away from those who wronged them.

How Rare is Rare?

When every medical diagnosis I have is considered rare, I want to know how rare is rare? Ehlers-Danlos Syndrome, Raynaud’s Syndrome, Celiac Sprue… the entire list is much longer than that and as of yesterday has a new contender. I found myself laughing when my doctor said, “Well, It is rare… but there is a name for the skin condition you have.”

I wasn’t even aware I had a skin condition. I always thought I was just dirtier than the other girls, and that my skin just sucked. I used to shower up to six times a day, though that made little to no difference in the quality of skin. I have lesions, blisters, boils and abscesses constantly. I thought this was normal, and that everyone got them at least sometimes. The name of this condition? Hidradenitis Supprativa. This condition is considered an actual disability according to the government.

I know why personally. For one, there are days when I can barely move my arms and walking, beyond the agony of the broken bones and hip issues I already have can be made worse by the damaged skin in my groin. Psychologically some of my most depressive days are the result of being infected, sweaty, and often worrying over spreading infection to others. Now that I know the name of the disease and have some knowledge I am aware that I am not going to infect anyone with it. It is rare. It is genetic.

I want to know what the mortality rate is with this disease. Some might say zero but I remember just wanting to die when I had my first really bad abscess. I was at work, and my nice shirt was ruined by the pus and blood because the boil burst before my break. I hid more shame, and beyond wanting to hide, run, or just cut my breasts off I considered killing myself. The never ending work of trying to get everything done, trying to be clean enough? That day I could not fathom selling anything, hefting the heavy boxes of dishes, and what about the smell?

Infection is not a clean smell. Neither is sweat. Being a teenager I never felt pretty. It took me becoming an adult to start seeing past the little things. Still, attending a friend’s wedding my thoughts were how to make certain my formal wear would not retain the odor of my sweat, on how to make sure that no one could tell. I am now entering the mourning stage of a new diagnosis. I mourn the times when I cut out my own abscesses. I did that last week. I have never once considered seeing a doctor when my breasts split open. It happens so often, that it is normal to me to self care.

This brings me to another point where I was accused of Self Mutilation as a teenager. Beyond having actual issues with that due to the severity of my depression, there were times when I was told I had to have cut myself in order for my body to be so gory. I was sent to a therapist for it. My body has scars, open wounds that have been around longer than some of my siblings, and my mind has been shaped by this disease.

The other effect of more rare diseases that are incurable is this. Can I escape being disabled? How inevitable is it for some of us to wind up with our bodies breaking us down? My body is out to get me. How can I function like this? What is next? Is breathing going to become a forbidden act because of something rare and genetic?

How can something like this really be rare too? Some of the research I did today indicates it is related to acne, though it is not acne. What if it is not as rare as all that? What if more people have it, undiagnosed and are losing out on their quality of life?

At this time there is no treatment. I will be updating my disabilities page, and I will find ways to help others like me. The more people who know, the more the odds of a treatment being created increase. I currently treat the breast area with a steroid cream, though, this is dangerous to do for your genitalia, and therefore half of my effected area is untreatable.

There is nothing that relieves the pressure, beyond bursting the abscesses. There is nothing that relieves the burning sensation, and there is nothing I can use to cut down on the sweat. Sometimes saline solution helps to dry me out, but, there is nothing that has a permanent or even reliable effect. Antibiotics have helped some, during the worst part of the cycle, yet not for me.

I am tired of being rare. I am tired of waking up in the middle of the night and squeezing puss out of my breasts. I am tired of denying myself sex, when I truly want it, because I fear being disgusting or the pain is too great. Sex is important to most people, me included, but my body is attacking itself and eventually my genetalia may be scarred so deeply that I can no longer function sexually.

In a long term relationship, this has an effect. It is not positive. As a woman, I have had a lot of challenges facing my femininity, partly because of this disease, but this adds another facet. If I cannot pleasure my partner, and vice versa, what are the long term side effects psychologically?

I am rare. I am one of the rarest people you will ever meet. My pain is rare. My skin is rare. My eyes and hair, and my entire body is a rare example of surviving despite it all. So is yours. So is the man on the street corner in the business suit. So is the single mother. Rare is not rare at all. For every diagnosis of a rare condition, countless others are never discovered. Statistics are faulty, when not every case is discovered, so how can we truly understand rare?

Info Links on Hidradenitis Supprativa:

http://www.hs-foundation.org

http://www.hs-usa.org

Isms, Hisms and Hersms

I read a few blogs on the internet circuit, some of them deal with feminism, some deal with racism, some deal with ableism, and others deal with Fatism. Isms of all shapes, sizes, colors, and one for each of us, sometimes two. Someone was having a sale on their isms when our culture was created, tossing them out like sprinkles on a cake. I am tired of isms today.

I have a great doctor. I will recommend her to just about anyone, for in her office there are no isms, just lists of things to get done. I now have an epipen, a referral for the dozens of undiagnosed whats its, and even a new diagnosis. I also was given the option of advocating for breast cancer awareness. The point was made that with my body being as it is, I have become acutely aware of risks and am in the perfect position to teach other disabled women about breast cancer.

I have thankfully never had breast cancer or even felt a strange lump but I do self exams weekly. I know it is recommended that you do monthly examinations, yet, this is not enough for me. I have relatives who have had cancer in all of their parts. Breast, brain, uterine, ovarian, liver, lung, you name it, and it has had cancer. I also have a lot of conditions, including one that effects my skin and therefore hypervigilance is necessary. Beyond this, what has made my doctor decide I am a great advocate? Self adaptation.

My breasts weigh a lot. Not only is the tissue very dense, making them pert and perky despite their size, but, it makes it harder to find lumps once you breach the FF quadrant. I left that a long time ago. I shared with her today my methods for a successful self examination. I have to adapt to the needs of my body and this means I may lay on my side, I may hang upside down, but, I always make certain to feel not just my breasts in a circular and consistent fashion, but my armpits and down my sides a bit.

I am lucky that I have had strong women in my life. I have an aunt who has had stage four Breast Cancer for longer than I have been alive. This woman has fought, and fought and thrives. She does at times worry her family for her life, but, she has dealt with cancer with no break for over twenty five years. In my mind she is the best teacher I can have about why cancer awareness is so important. Without knowing her, I might not have decided to live during one of the bouts with suicidal thoughts that I went through as a teenager. I might not have begun to battle with myself for proper medical care.

I have a lot of diagnosis, the list grows daily, but, my isms are mine. I am a short, fat, white girl in a wheelchair. I am also blessed with very rare breasts, the sort that women have painful surgery to mirror. I have great hair, great eyes (when they see) and a brain. I am facing daily challenges with ableism, fatism, and even some fetishism. Sexism is a consistent battle. I also face the blessings of people who are better than the isms. I face the knowledge given to me by my fellow females, and now I must learn to share.

Take stock of your isms, be you male or female. Take a look at what you are given by station in life, what you have fought for, and, if you have enough to share, reach out and help someone rise above. I will post about my chances to advocate for breast health. I am even going to start getting mammograms, a need I had hoped to put off for at least ten more years, but perhaps I can come up with a way to make them less painful.

This is hardly a new idea, I am merely following in the path of others who have taught me. This is not an area I had ever expected to be asked to advocate in, but, how can I deny the request when I know that even one person may become self aware?

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.

Whatever Happened to Baby Jane? (Trigger Warning)

Bette Davis, Joan Crawford…A movie about the horrors disabled people can face with an abuser.

This is one of the most wonderful but horrific films I have ever seen. Joan Crawford plays an actress with a jealous sister who not only tried to kill her but is now her only caregiver. Bette Davis plays all of my worst fears brought to life. She forces Joan to either starve or eat rats, her pet bird, or possibly poisoned food. Their maid, a beautiful African American woman, is the hero in this. It is she who sees the potential for something wrong and refuses to leave the day she is fired, instead insisting on seeing Joan’s character. It is she who saves her from embezzlement, being isolated, beaten, and left to die a slow and horrible death. She was cut off too, no telephone, stuck upstairs, the bell for help taken away. It is horrible to watch.Bette’s performance is that of pure evil, in the loveliest of forms.  The genius of this film is that they use clips of the actresses when they were younger. They build the story up and you feel the pain involved with Joan’s treatment.

This film also highlights the incompetence of others, enabling the abuse. The teller who illegally (possibly not at the time of the film being made) gives cash when a deposit is required. The neighbors who ignore the weak cries for help, though they may not hear. The doctors who ignore the patient’s panicked cry when she could under duress be recanting. I will not spoil the climax of the film, but needless to say, this one touched a nerve. There is murder in this story, no one wins. Hope is torn from the viewer and Joan’s character.

Gaslight with Ingrid Bergman is another film that taps on true life abuses. The abused housewife is not beaten, but is instead told over and over until she believes it that she is insane. His greed is what drives his crimes, polygamy, identity theft, and murder among them. He uses the technology of the day to prove to her she is insane. He too plays on my worst fears. He proves to me that men are evil, a blanket statement that feels utterly true while I watch this movie. It isn’t, but it feels that way. He abuses his wife, publicly and privately humiliating her, forcing her into things that were against her nature.This film was so effective it gave it’s name to an entire term in psychology. Gaslighting is the proper term for causing someone to think they are insane. There is more to this of course, but this is the best I can do to explain right now.

Why am I posting about two films made before my birth? They touched me. They burned my heart up and left me shuddering with memories. They triggered responses in me that were deeper than perhaps intended. I felt the trappedness from my previous experience. I felt the worthlessness of knowing I am wrong at all times, and that my only value to others was at their own pleasure, my own wants and needs coming last. I felt the fists of my father in me again. I felt the harsh words of burden.

I am not a burden, I am not insane, and I am free. I had to chant this at times, the wheelchair a prison during the entire time. I could see even one stair trapping me. I can only remember too well  how few people actually listened when I cried out for help. The cold stabbing feeling of being told my case was not compelling enough to prosecute, that no one wanted to protect a child from  her rapist father.

Caregiver abuse is one of the worst crimes I have ever heard of. Some call it elder abuse, but, elderly folk aren’t the only ones trapped by their bodies. Many are vital and amazingly resiliant. I am posting about these films so that you can perhaps try to feel the things I felt, in lesser measure. These films raise awareness of the plights of the hidden victims in this world. Perhaps even someone you know is enduring secret abuse. You might not be able to save them, but raising awareness even by one, can help them save themselves.

Whatever happened to Baby Jane? Be glad you are not so evil, and if you are, may you see your reflection and set your victim free.

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