A Breath of Panic (Trigger Warning)

It came as a small scratching at the door. The wind and rain pounding on the outside making it easy to ignore. The cats sat staring at the closed curtains, each bristling. Then came the howls of the neighbor’s dog. It was snarling with rage. Even still, it could’ve been ignored. It was an eventful storm, loud and showing the wrath of nature. Nature screaming at the impending violation of his presence? The words brought me to pause, literally as I was watching a movie. “Oh (expletive) the door is locked.”

Immediately I sprang into action, my immobile body trapping me with the slowness that comes with adrenaline. My hands shook as I dialed first the Security office at the apartment, then the police. Someone had tried to enter. I couldn’t tell if it was my Ex. I knew it was. The cats ignore most strangers but fear him. In fact every day I still find new shades of things he has done. Today I learned that William answers to curse words.

The operator for 911 asked me to stay on the line. I appreciated that, I felt like I was going to pass out from panic. I didn’t tell her. If I said it, it acknowledged the part of me that had to wait. She had answered the phone before and remembered my voice, and that alone was comfort. Another bang came, and I heard the van driving up to the front. There were some thuds… then he was inside. It lasted for a split second, I never even saw him. The Security officer was there, and the police came as quickly as they could. The storm slowed them. I listened to the howl and watched my cats rage.

What happened? Using his key he broke into my storage unit, then he forced the door to open with brute force. The cats hid, and I risked pain by rolling off of my spot and crawling behind the wall space. I didn’t cry. I will probably when I lay down. I can’t yet. Everything is still to fresh. It’s been five hours and I just sit here. I finished my movie, I called people.

There is of course more to this story, but, he came again. I had just started to feel safe. The police told me I may not open my windows or doors, they will be watching the apartment as they can but any other crisis will pull them away. This will last until I move. I know too, now that there are two warrants for his arrest. I asked if I could write about that, and they said “Sure. If he reads it he may turn himself in, which will make his punishment much less.”

He did get away with some things. He took a few of my wheelchair accessories but not the wheelchair. I had started to feel safe. The complacency of having a moving date in mind and being about to pay my deposit via the help of my friend M, it left me feeling safe. I am still imagining. I am not just staring at the walls but I am browsing online stores and imagining what items may look like in my home and my yard.

I am (expletive) terrified. I should be. The idiot (yes I am just going to call him what he seems to be) first broke into the wrong apartment. The neighbor’s dog went after his balls and he may or may not have a serious groin injury. The neighbor did not see his face but was fairly certain it was him. They also called the police. Other neighbors heard the barking and looked outside. A total of six different neighbors and myself called in but he still escaped.

I do feel safer knowing that they didn’t ignore it. I have some balls I got for free with a bag of catfood, I am not sure why they were giving dog toys away but, I had been intending to give them to a service dog I know. Now they will be one less. The officer hand delivered the tennis ball for me, because that dog saved my life. I would’ve ignored it. I’ve felt like a crazy woman jumping at every sound.

It has worn me down so far, that I cannot even comprehend saftey. It feels like this distant dream. The concept that I could be safe? It’s a sweet torture. I can’t stop imagining it but now it feels like the worst idea ever. I do not want to sleep in my bed, it smells bad and I am afraid, one of the neighbors reported a gun.

Because he entered the storage unit and only he and I have a key, it was deemed beyond a reasonable doubt that he broke in. The police are going to make my landlord fix my door first thing in the morning, and security is parked out front. I know they will protect me but, I cannot stop the fear. None the less, I know I did the right thing. The police were impressed with my ability to protect myself. I will be feeling the effects for days.

In fact I never would have known he had entered the storage shed if I had not leaned on the door to keep my balance. I felt it shift and we all heard the lock click. I checked because they suspected he was hiding in side, but no such luck.

I do know this will help me with my restraining order. I go to court Wednesday at 9:45 AM. If he reads this maybe he will show up. He can tell them it’s all in my head.

I keep replaying the moment where he penetrated my home, there was a crackling sound, the door still closes now but he forced the locking mechanism through the wood, which was already damaged enough it looks whole. I felt myself stop, the cats were bolting away so I rolled and felt the most pain I have in a long time. I know nothing is broken that wasn’t before, and I will be bruised but, if I had been in his line of sight I might be dead.

I can’t wait to move. The good news is my friend who is helping me with the rent and deposit this month, so I can get out of Dodge has also replaced my waterbed mattress and has given me bedding. This means when I move I will sleep that first night in a bed that is full of clean instead of the decrepit filfth. I may even leave the mold filled waterbed here with the bags of his belongings. I no longer plan to try returning them to him. I will abandon it.

If you are wondering how bad the bed is, let me just say that the smell fills the entire house, and both K and myself have been taking benedryl so that we can breathe, the cats too. When I lay down it crunches, and sometimes it stabs me hard enough I can’t find a spot to rest on. I have no bedding as it is, and the poor man wound up having to replace everything except my bed frame. My ex found a way to ruin everything he could.

I will eventually post the wishlists here, though I may hide my really outlandish jewelry wishlist from you all. I decided to just make a list of anything pretty I may someday want, ignoring the fact most of it is over priced and I would never buy it.

Thank you all again for your support. I want to use this moment to draw your attention to a blog post that reminded me that this would’ve been way better if I wasn’t disabled. I wouldn’t have to fight for any police response. Tonight has been the major exception and not the rule. I had probably the best officer on the entire APD show up. So, here it is. This too has a trigger warning but it’s worth it.

The Cliche of Anger

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

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

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

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

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

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

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

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

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

Privileged

We live in a world of priviledge. White, Male, Able bodied, and sexual are merely a few. My awareness of my disability became a journey into the cryptic world of truth. This is a part of what has lead me to become a reporter for a local paper. The staff understand that due to my limitations I cannot always “do it” but in turn I understand they have questions about who I am. My questioning mind seeks information out, and I never stop analyzing. This means I also have some very high standards for my social interactions with people. I know what I like, and screw you if you cannot maintain a consistent approach.

Having a diverse friend base, this does at times cause internal friction though I have only told the people I am rejecting to go away. I resort to the screw you if I cannot get through to them with the concept that I am not their friend. This as an adult has occurred with two people repeatedly. Today I told my fiance about a woman, Cynthia McKinney who was kidnapped in a foreign country. He hadn’t heard about this. I admit since we rarely watch the TV this isn’t a surprising factor, though when I mentioned that not many others had, excluding the twitter users and bloggers none bothered to talk about her capture, he was floored.  He then said the most wonderful thing, for it filled my heart with joy that I live with a man who is aware of his privilege. “It’s disgusting. We have these rules, that allow people to do that crap and feel better. It’s a band aid over a slit throat that’s dirty, old, and infected. Sure, we think we’re fine but our body is dying.”

Our body is dying. I think on privilege often. Neither of us can ignore it. As a disabled woman, I run into privilege daily. If I leave the house it is there. Yesterday, I was told just how convenient my wheelchair is because it has a sunshade. In my brand new effort to not be Super Cripple, I said, “Absolutely, I only had to break my spine, become homeless, and develop an allergy to the sun in order to have this convenience. Want me to help you get one? I am sure I can find some way for you to become disabled.” I said it with a smile. The cold knife of sarcasm caused the cashier to falter, she looked down, and then I was invisible. She handed MY change to my fiance. He tried to correct her and pointed to me but she just set it down.

i made a choice to use the cutting words, yet this is not the first time that this same cashier has said this. She doesn’t seem to remember that she has done it, and I don’t need to be exposed to her ignorance each time. My fiance and i talked about it before I went home by myself, wanting the sun on my skin and knowing that the side walk was safe between the shopping center and the house.

He asked, “Are you okay?”

I replied with a frown, “Yeah, well no. I am so tired of that same behavior. I think I may write the store manager about it, though the other employees also do the same stuff.” Each time we go in, I have someone leaning on my chair, patting my head, and in general am treated like a child. This is a national chain, and my fiance having worked there knows that Walgreens prides itself on how it’s employees are given sensitivity training. With a higher than average rate of ableism in this store, I think the trainer was flawed.  Every time we go in, I am required to educate someone. It is a burden. I usually just need a cool drink to lower my body temperature so that I don’t faint. I may actually just want to get a candy bar. Why am I forced to deal with their ableism? I cannot do so in silence, or it will get worse, but it is exhausting.

He nodded, “Maybe you should offer to retrain them. For a fee.” I laughed but seriously am considering this. I also plan to detail for the management just how much we buy at their establishment. My fiance is lumped into a new category with me. Each time we are out he is given the pitying look by someone, and often has mostly older persons (yes, an entire generation of people oblivious to privilege exists) whisper to him how nice it is that he takes care of the wheelchair woman. Most actually say “Stupid cripple.”

Sometimes I relish his responses, how can I relish the pain and shock his refusal to blend in with other people causes? I think it’s the freedom it feels. I almost feel like I don’t have the right to do this and that is when I start super cripping. It’s a stolen moment of equality, a moment which by all rights is mine, but has been taken from me by the limited acknowledgment of generations before. My favorite response to a person doing this was actually a few days ago.  He was more frustrated than I was, it was July 3rd and we had to get food. Sprite was tucked up in my sun shade and was very miffed that we hadn’t gone home, but without food there would be consequences. All of the local stores were closing early.

I had just cursed someone out (I really said the”f” word) to get her to keep her hands off of me, and it took the threat of bodily harm via the Scooter to get her to step back. I was seething, then my person, my wonderful person comes and gets what we need off of that aisle. He doesn’t know it’s the same woman, as we are walking towards the next section she sidles up to him, I allow this because I am sure she’s about to tell him how evil I am. She says, “It’s so nice you can tolerate that thing.” Thing. Dehumanized in one sentence. He turns a bit red with rage, but she’s about my mother’s age, old enough that hitting her is worse somehow than hitting someone in our age group. He wanted to, it was there. We were both seething with exhausted frustration. “I mean, cripples are such burdens.”

I heard his response though I dropped back. In all honesty and openness I was considering how hard to ram her, and ifI should try to break her hip. I wouldn’t really but at times the visual is so wonderful. Imagination can be a great equalizer. He replied with anger, “She’s not a burden. If anything I am a burden to her. I don’t always pick up after myself, I sometimes expect her to do things she can’t and she does this with grace. She’s not a thing. That’s my wife.” He likes to call me his wife and I really do like it too. “My wife is a real lady, unlike you. She deals with people like you every day and she hasn’t killed any of them yet but she’d be within her rights.” Sometimes I want to and I usually share this with him, to let off the steam. “Another thing, if she’s a thing so are you! You have the privileged of a working body, it isn’t a right. You can be in a wheelchair like that.” Snapping his fingers he then sped up. I zipped past her, and rode beside him with great pride.

We talk about in this house often. There are no children to educate, it is merely something we both see. He has grown, as I have. In fact, he often tries to subvert is priviledge where he can. When he sees someone no matter who they are, having a bad day, he allows them in front of us in line (barring so low energy that this is a danger to my health). He does this to try and brighten their day and does this regardless of gratitude. Most of the time there is a grunt of anger or acknowledgment and that is it. He doesn’t stop. I note most often he does this for women, children, and persons who are most often ignored, allowing the men to wait. I am not sure if this is an expression of privilege but it is also the sort of person I would leave waiting, so if it is it is one we share. He is a joy to watch in the world. I often feel a separateness from most people but not with him.

How many white men who are so privileged to be in their 30s and still have a credit card from their parents usually see their privilege? How many white men usually can see it? In my experience it is the able bodied white man who fears this awareness above all. I know, too, that a requirement for being with the man I love, is this awareness.

I don’t talk about this often, but, some of the exploitation of the disabled that we see includes the cost of being disabled. It is very expensive, especially when the insurance companies don’t want to cover the cost of a wheelchair until you cannot leave your house, and then you still may not qualify for the one you actually need. if you need a bathchair, it is almost impossible to get a prescription for it, where we live. The cost increases as the economy makes money tighter.

What is my fiance doing to try and bring equality to the playing field? He is using his skills with repairing wheelchairs (he has repaired mine when the manufacturer failed) to try and help. He charges cost of parts, because we have to in order to eat, and a loaf of a specific gluten free bread or two dollars per hour, which has so far been used to buy a single loaf of gluten free bread. This fee is even negotiable. It is an expression of privilege that he CAN negotiate yet, it is also something that he wants to do to help people who may “lose their legs” and not be able to get their wheelchair repaired. I live with a man who knows his privilege. Yes, he is still learning about it but, the fact that he is willing to take that journey is by itself a fantastic thing that is the truest show of love he can offer me.

For more reading about privilege, I recommend checking out two places out of the thousands that you could check first. Start with a peak at http://www.womanist-musings.com/ followed up by http://thewhatifgirl.wordpress.com/. Renne, the proprietor of Womanist Musings is a wonderful writer, who has a life long experience with privilege. I find her writing more direct, and often much more clear about what privilege is. She also often reports on news you will not find elsewhere. The What if Girl has recently begun to discover her privilege and is exploring that. On top of this, she is also a fun read. I enjoy both of their blogs daily. You can find further resources at their sites, if you do not enjoy their writing specifically.

“Happy” Anniversary (Trigger Warning)

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

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

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

The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

I live!

I hope you all can forgive my silence. Here is a quick rundown of why my blogging may become a bit more sporadic. I will try to not be so lack luster in my posting, and I have stories to tell!

1. I am starting a public speaking business. I will try to travel and blog, though until I get a laptop that might not happen. I will try to use the scheduler on WordPress, if I can figure out how to make it actually post.

2. As an ordained interfaith minister at times I perform weddings. I like to assist with the planning, networking resources, and it is another time consuming affair, also at times with travel involved. I am currently in the process of helping plan a huge wedding with in three months.

3. I might have cancer. This year I am getting a double cancer scare. I have posted before about the annual cancer scare. This time my doctors think I have both skin cancer and uterine cancer. I don’t think I have either but we are doing biopsies (which left me incapacitated for three days) and tests just to be safe.

4. I am trying to keep my commitments as well. I am helping to start a new Toastmasters Club at both the local University and one at the other end of town. I am also going to be active in my regular two clubs.

This is all between writing my novel, on the blog, working on my art and I will also be crafting things to sell at craft shows and as special commissions. A lot of this occurs around wedding time. (Feel free to book me as a minister, I can legally marry you in most states and as an interfaith minister am able to work with many faiths. I also perform commitment ceremonies for those who cannot legally marry their life partners in most of the US at this time.)

I will continue my activism as well. It never ends, and although I am tired when writing this, I still need to wash my face to remove the eyeliner Day of Silence writing from the protest, I am exhausted but content. I will try to write tomorrow, and due to the incliment weather might just have more time.

It is spring and SNOWING!

I am Angry

I became aware of my anger today. I wasn’t aware how angry I was until trying to explain my back injury. I often tell myself I am not angry and try to behave with altruism in mind. I am pissed. Right now I could cuss! I have felt tension in my neck lately but, there are so many reasons to be tense I couldn’t figure out the why.

I am angry that people take disability as a sign of dramatics. I am not overly dramatic when I do not want to go grocery shopping. I do not want to face people. I do not want to treat something else that is medically wrong with me the doctors way, and choose to abide myself. This doesn’t make me overly dramatic. I have reasons for each thing, and none of them are dramatic.

None of my disabilities are in my head. As a young disabled woman, I am often told to get up and walk. My wheelchair is used as an excuse to shame me. It fails, but, I am angry. I am tired of explaining why I am in a wheelchair. Why is it not acceptable to ask someone, “Why aren’t you in a wheelchair?” Why is it that being seen as abnormal means people perceive weakness?

I am not weak. There is no weakness left with in me today. I might be weak tomorrow but right now I am feeling the roots of the earth. I am feeling ancient and mighty. There is a cost at this anger, but being aware of it means I can try and let it go.

I am specifically angry at the word Vanity today. Why is it vain to want to prepare for the risk of my hair not coming back with scar tissue? Any other person I know of seeking out ideas, pricing wigs, and other ways to hide scars would be assisted. When I ask the question the shop keepers look at me, look at the chair and ask why I bother. This is not right.

I want every bit of perceivable normalcy that I can obtain. I do not want people to see a big scar on my head, then my face. I want them to see my face. It is hard enough knowing that they first see my wheelchair, then my service animal, then my breasts, then my face. It takes so much more for a person with a disability to be seen as a person at all.

Why does it take extra brilliance to be an equal? Why does it take harder work to make ends meet? I am angry about this. My rage burns slow and deep. I am trying to change things but my fear is that I will fail. I am starting a professional public speaking business, and I am hearing the voice in my head whispering, “You will fail.”

I might. I don’t think I will. I know I will face discrimination, I will have to enforce the ADA wherever I go. I fear though, that I will be paid less because of the chair. I fear that people will not want to hear me speak because what good can a chubby chick in a wheelchair do for them? I have to push these aside and feel my anger, so that I can push on.

I am angry too as I realize that bullying doesn’t end with childhood. I am disappointed as that delusion fades upon the minor scruitiny. I will write about that soon. Adult bullies are just as bad as the children they raise. They are the ones who teach children cruelty. I run into them often.

I am proud to say that my lack of weakness shows more often than anything else. I am a very strong and talented woman but, what about those who have not had the chance to flourish? Yes, I fought tooth and nail for every bit of normal I can project, for every success. Not everyone is strong enough and most children with disabilities need more care than I recieved. How much stronger would I be if I had been cared for? I think I would be a million times stronger.

I am a butterfly with broken wings that has flown again. I just want to fly without it hurting. I want a moment of peace. I want to have one day where I do not have to prepare myself for the onslaught of the world’s prejudice. One day of peace. There is no such day. It might happen for some but as a person who cannot hide their disability, as a person who has a disability at all, as a woman, as a bisexual person, as an autistic, as a person of any minority knows… that day of peace is one that you fight for and taking it can cost you everything.

I am so angry, but I will not let my anger interrupt my path. I will not let it mask my fear. I will instead use it as passion to continue fighting discrimination. I will continue fighting for my freedom. I will continue fighting for your freedom. Everyday more people become disabled. Everyday more people find their rights are a myth. Everyday people die as a result of discrimination. Everyday in the United States, where I live, people die of starvation, people become homeless.

I am so angry. The anger comes from an emotional pain that leaves my heart throbbing and me in tears. This pain is for those who suffer. Part of it is physical pain too. My back aches, my muscles spasm, my ears ring so loudly I can barely hear anything over the din, my fingers hurt and dislocate, and I grow angrier because I don’t know why I feel like this. I shouldn’t lose a day to snow. I shouldn’t fear going outside, because each time I do my saftey is threatened by ignorant fools.

The cost of living with a disability is so high. I am tired of paying it. I am tired of feeling the terror of actually working. It makes me angry to feel fear like this. What if I do not earn enough to pay for my medication? What if I lose my SSI and become homeless? Will my Person and Caregiver both lose their incomes if I work? It effects them too.

I am tired of being angry. I am tired of worrying about appearance, yearning for enough money, proper clothing, and the ability to do what I want when I want not when someone else’s whim allows. I am far from alone in this anger too. Most people feel a form of it.

I thirst for the waters of freedom. I gasp for the air of life. I reach for it, but it is just out of reach. I feel the wind beneath my grasp and know it brings another storm I must weather. This is living. This is a life I did not dream of or foresee. I was unprepared yesterday. I was unprepared today. Tomorrow I will be prepared.

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