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.

Blogging Against Disablism

I have restarted this post twice now. Part of it is my pain clouding my mind and a resistance to taking my pain meds. I have not shaken the habit of taking them only when I cannot stand the pain. This has left me fighting off a meanness that the pain brings up. I don’t even feel it at first, but, then I realize I am harboring a great deal of anger. Once I accept that I can take my pain and that it is alright to take the little pill that lets me do more than just deal with it, I can resume living.

I see this as my truest handicap. I am at risk of pushing people away because I fear being addicted to a drug. I am dependant on the morphine, but not addicted. The dependency is my need to actually have a life. I am starting a business, I am following my dreams which I had presumed dead and lost to me for years. I am also using my handicap to my advantage.

I listened to a speaker last night who came to the United States from China. She has not shed her accent, nor should she. In her speech she explained the prejudices she faces as a result of sounding foreign in the united states. This racism that she deals with overlaps ableism. People look at a disabled woman and see her as stupid, inferior. People hear her and presume she is stupid, inferior. They presume that neither set of people has the capability to do brilliant things. We are raised with this belief system. We are told even if not directly by our parents, by the world we live in which segregates the special children, or forces students to take English as a Second Language courses regardless of need based not on their actual language but on their race.

My most recent example of a person using my disability as an excuse to other me comes from the grocery store. I went in with my Person to pick up some items for a road trip, with a client. I must protect myself from allergens and that was the solution. Sprite was riding behind me, tucked under the sunshade, and hiding behind my body. A woman came up, I am leaving out a description of her because when I write it, I other her. That is not acceptable either. She tried to pet Sprite. I didn’t bother explaining anything to her, I said in a very soft voice, meant to be calm, “Please go away.” She exploded. “HOW DARE YOU!” She got in my face, and I dropped the softness, but stayed polite. “Please go away,” She snarled, “You aren’t doing anything and you shouldn’t have a pet in the store.” I replied. “Please go away. I am doing my shopping and I am not here to befriend you, talk about your pets, nor am I breaking any laws. I do not wish to discuss this matter with you and have been polite thus far, despite your yelling and harassment.” I then floored it, my chair whipping around the corner and continued my shopping. Ten minutes later I hear the sound of my Person being pushed. His grunt of pain reaches me just before this woman is in my face again, “YOU DON’T HAVE THE RIGHT TO BE RUDE TO ME!” That was when I stopped playing nice. I let myself snarl right back, though I did not yell, “Really? Assaulting someone who is not involved in our discussion is rude, trying to invade my space is rude, yelling at me is rude, and showing your own inability to grasp the rights of others is beyond rude. Get out of my way, I don’t really care what you want out of me I am not here for your enjoyment. If you bother me again I will call security.” She flounced away, and I finished my shopping.

As we left, the store manager who had the law explained to her as we entered was discussing the incident with this shopper. She had gone to the manager to have me thrown out. Instead she was told this, “I am sorry ma’am but you have no right to touch her, her wheelchair, or her service animal. The law protects her rights to shop here in saftey, as it does yours.” The woman replied , “She’s just a cripple, she doesn’t have any rights.” The manager was openly angry at this, which surprised me since she’d been a bit of a hard case about it all before. I left then, to the sound of, “She has just as many rights as you do, and if you continue to behave in this manner I will have to have you removed from my store.” The woman then threw herself on the ground and had a tantrum like a toddler.

I learned something from this, that was the point of sharing it. I learned that every person I edcuate becomes an asset. I did not feel this woman could be educated, nor did I feel prepred to try and spoon feed her the information. The burden of fuctioning with a disability is fighting for my rights. I use my disability as a tool to be under estimated. The woman underestimated the ability of not just myself but of others to actually see the humanity with in my body. She under estimated the ability of people to actually listen. I do at times too.

The secret to blogging against disablism? Is to do it whenever you write. The secret to teaching aout disablism? Is to live.

I know this post isn’t as wonderful as I wanted, I am still distracted and out of it. I am not feeling myself. I hope it does encapsulate an idea. By living and not giving up our dreams we fight ableism/disablism. By having lives we fight against disablism. I am partly distracted byt a disappointment with Obama and his failure to sign the Community Choice Act. I am disappointed with his inability to see the human rights that lie at the end of his pen. There is still time, but, his administration has openly stated that there is no reason for him to actually make the changes that free people from being forced into Nursing homes.

Beyond blogging against disablism, I call you to act. Go out into the world, be seen. Educate via your existence.

To read more about Blogging Against Disablism Day, please follow this link.

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!

30 Seconds

Tick, tick, tick. That is the sound of the watch counting down on your life. A disaster is about to hit. You are going to have to choose between living or dying. Tick, tick, tick. You have thirty seconds.

Thirty seconds seems so short when you look at the length of the average human life. People live past 100 years of age sometimes. To them thirty seconds might just be the blink of an eye. Thirty seconds can also feel like an eternity. For me, life has changed in thirty second bursts. I am given two choices and neither is pleasant.

Tick, tick, tick, The choice between life or three deaths came. I broke my back in a car accident. I could have made a choice to not risk my back, but the choice was between my life with health intact or at least my life intact or dying along with two children. Tick tick tick. The clock slowed down. It felt like an eternity. I know it was sudden. The impact that jarred us forward, sending our bodies into a free fall. The chair that should have kept us from flying free loose, wobbling and stripping up. the bolts connecting it to the van coming free. The cries of fear were drawn out. I had time to shift down, bracing for the impact.

The thirty seconds ran out and I felt as if I had died. The van seat pressed into me. I pressed back. I felt crunching inside of me. My hips popped out of their sockets and then everything went too quickly. I couldn’t think clearly through the pain to advocate for my needs. I just knew I was hurt. The boys were fine. The basketball pole we had hit was up inside of the van, the driver was afraid and sped away. No one else was injured.

This was the first time that the clock stopped like this and I managed to make a difference. Many times in my life the clock slowed, I had more than thirty seconds to feel a fall, or to choose. Tick, tick, tick. It was just thirty seconds but two brilliant young men are able to change the world. They will never know what I sacrificed. There was no ambulence, I had to try and get to the ER alone. My legs refused to move. I made them. I made it to the bus stop and waited. The clock was ticking, but now it was silent. It was seducing me, allowing me to be lulled into the dazed sensations of pain. It took me an entire day to make it to the Emergency Room.

The clock slowed again, I waited for two more days to be treated. I was forbidden to eat or drink, because surely the doctors would want to treat me and if I ate or drank I would die if I needed surgery. I had no money for food anyway. I just sat, watching the click on the wall. The minute hand creeping forward slowly. They missed the broken bones in my back. I was told nothing was wrong and to go on with my life. No pain medicine, just the assurance that in a few days I would be right as rain.

It was a flood. I waited a few days then went to the dance troupe I was a member of. I looked forward to moving, because I hurt so much. Movement would stretch my muscles and I would feel better. I raised my hands up and started to move with the others to the music. The clock slowed again. My legs went away and I collapsed. The pain grew, my head burned with it and I drifted into a daze. They wanted to call an ambulence. I refused it. The doctors had told me I was fine. I had to deal with this alone. I hadn’t learned to fire them yet. I had not learned what it meant when time slowed down and the second hand sounded like thunder. I made the wrong choice this time. My spine could’ve been saved. I should have gone to the ER, to see if they could find out why i was still in pain.

Time sped up, too fast this time. I lost my job as a dancer. Months passed in a single tick of the clock. They did not want me to go but I was weaker and weaker. My job as a teacher was lost. My job as a retail worker faded out too. I was facing homelessness. I couldn’t make a good impression at the job interviews. I kept getting sick from pain and fainting. No one hired me. My savings drained out. A flood of green flowing away. Tick. Tick. Tick.

My shelter was gone. I had to choose. I could live with my grandmother, if I ate food that would make me sick. She didn’t understand allergies enough to care. I could obey her every whim. I could live with a woman who had no love for anyone. I could be on the street in December with snow on the ground. I went to live with my grandmother. That was worse than snow. Grandma doesn’t like people. She likes to control them. Grandma is like my father without a penis to rape me with.

It lasted until Spring. Then she locked me out for seeking peace. She locked me out again when I went to a bar. I wanted to be away from her. I danced with someone. I drank a soda. I came back to where I should be sleeping to torrents of abuse, accusations of theft, being forbidden to continue to work at a video store. I was devalued. The clock kept ticking, and my spirit faded out further. Tick. Tick. Tick. I wished I had died.

I chose to go back to the city, to the streets. I chose wrong again. There was no right choice. That first night I laid on the cold floor, shivering and trying to sleep. My pain saved me. My paranoia saved me. I had taken a fork from dinner to bed with me. They count the knives at that shelter. The men and women all sleep on the floor. No matter if you are disabled, no matter if you are all alone. You are sheep together for the slaughter of someone else’s profit at your homelessness. I thought it was a nightmare at first, when I felt hands on me. I opened my eyes. I remember noting he had no teeth. The fork I had stolen was in my hand. I stabbed him in the chest with it. I pierced his flesh, I was quiet. He wasn’t. He scurried away, screaming and trying to escape me. I kicked hard. My legs held for a moment. Long enough to bruise his testicles. He had wanted to rape me. I laid back and listened to him explain his screams. He’d rolled onto the fork, he said, during a nightmare.

I couldn’t move in the morning. My legs wouldn’t move. Two men hefted me up and set me at a table. They gave me knowing looks. They brought me food for two days, but, then I had to try finding a job again. I walked the city. My feet started to swell, my clothing too. All of the toxic food was making my body gain weight. My stumbling had me often called a drunk. I hid in the library. It was April. Easter was coming. Two days before Easter it snowed. I waited in the city, no one allowed to use the shelter in the day. Not even the blind and broken woman who could barely handle the chill. We stood for eight hours in the snow. I gave up my spot in the warmth to a woman and her two children.

I heard the ticking clock again. It was so hard to move. A married couple carried me into the bus. The driver had wanted to leave us out to die. Many would die anyway. I almost did. He didn’t want to lose his job. It took more than thirty seconds to get me on the bus. It felt like an eternity. When in the light of the shelter, someone screamed. My face was black. Not the black that the persons of color might be, not a gleaming and rich ebony. The blackness of dead tissue. My entire body was black. No ambulence. The bus driver had to drive me out. The same married couple came to make sure I would be alright.

The doctor was afraid. My Blood pressure was 66/80. I should have been dead or in a coma. I made bad jokes. I laughed to stay alive. I hurt. The pain in my back was worse. I could feel my legs, my face. The tingle of damaged nerves. All they could do was thaw me out, send me back. I had no shoes now. I could not walk. I went to another shelter. My anger was too potent for them. I refused to die. The other shelter had a time limit. I had until the Fourth of July to get a job and move out. I went back to teaching music, another community center.

My pain was bad, growing worse. It was a mile to the center from the nearest bus stop. A mile because no driver would enter the “War Zone.” Gangs. Drugs. Pain. I ignored my needs. I lasted two months. I walked out after my boss refused to tell a client he could not shove his gun in my face. I yelled at him for it, turned out he lead the gang. He didn’t kill me. He was too shocked that the little white woman would tell him off. I was trapped by that act with two abusers.

Years passed. I could do less and less. The clock kept winding down. It stopped. Finally the diagnosis came. “When did you break your back?” That thirty seconds lasted for two years. I could barel walk. My pride at being able to walk left me to push myself. The doctor wanted me on antidepressants. I rejected that idea. Without them I could not have pain meds, she said. I did not want pain medicine. I kept telling myself the pain meant I was alive. I wasn’t living. I was just flesh in space. I couldn’t figure out how to wind the clock.

Two years turned into four. I finally gave in and started accepting that pain needed to be deadened. I accepted it would never go away. Four years turned into six. I began to fight for my freedom. I fought for a wheelchair, for the use of a service animal and I fought for my person. Six years turned into Eight. Today is the anniversary of my nearly freezing to death almost eight years ago. This is close to the speech I am giving later.

I am only twenty four. The damage to my body over my life time has come in bursts that lasted just thirty seconds. Each one has taken me years to even begin to treat and that is just unacceptable. In thirty seconds you can run a Super Bowl Commercial. In Thirty Seconds you can make a difference. If I took back all of those thirty second bursts. I could have another life time. I wouldn’t change my choice on that fateful day, when I had to choose Disability or Death. I just wish I had known that in thirty seconds I would join a minority. Being unaware of disabiling conditions I already had, I wasn’t an actual member yet.

It only takes Thirty Seconds to become disabled. Don’t forget that. Thirty seconds can cost you everything you think you hold dear. Thirty seconds can be the difference between dancing in a movie or dying on the streets. Just thirty seconds.

Reality of Choice

It is unfair that we must bear a responsibility to take up slack for people who want life spoon fed to them. It is wrong that we must be better advocates than anyone else around us. It is wrong that we must fight for our basic human rights constantly. No one chooses to be disabled but here we are, fighting anyway. I am tired of wearing the Super Cripple label. I am tired.

Today I was reminded that it is important to be human. I didn’t know I had been working on being Super Perfect again. I do this without thinking. It comes from the need to survive. Growing up without a diagnosis for any of my differences including Autism left me with a need to be extra normal. I used to fail on purpose so that no one would hate me for being smart. They hated me for being me anyway.

I have spent my life trying to blend in with the able bodied and normal. I have never quite managed. Even when I am trying to seem normal, passing as if the only disability I have is my spine, something other shines through. Maybe it is the way I wince at something no one else can hear. Maybe it is the way that I curl my hands up and hold them at my sides. I try to not. Maybe it is the way I look at people, without looking at them. I haven’t made real eye contact in years. No one notices… or do they?

The first paragraph came from my responding to a post on another blog, the blog that forced me to begin writing. It is a post that commiserates with the service animal users, and offers support. Every day every disabled person has to advocate. People tell me often to not get angry. I am tired of not being allowed to have a real emotion because it might upset the normies. I really want to cuss right now. I want to let those words fly out because that’s what the normies would do. They use weird language, from my vantage point. Awkward tones, words that can make less sense because to them the idea of making sense to someone else is ridiculous. The idea that someone could be prejudiced because you do not use a word improperly is foreign.

Today was a good day, if exhausting. I woke up to illegal action by my apartment. The apartment is supposed to give a twenty four hour warning before entering my home. We had three. We also had to avoid being here due to the risks of exposure to allergens and their pesticide use. William spent the entire day in a carrier, just as panicked as I felt at the squeal of brakes, the cacophony of traffic. Sprite was her usual self, thoguh she panicked a few times too. My head still hurts from being next to a bus that had squeaky breaks. I can still hear it, over the TV, over the silence if I turn it off. There is no choice for me there. I cannot escape the overwhelming sounds. I cannot escape the pressure in my head.

I cannot escape the texture of my blanket. Tonight it feels like sand paper. Yesterday it was the softest cloud. The reality is, others have it worse than I do. Others cannot coherently string words together to express themselves. Lately I have been wondering how much “real” autistics suffer. I have been wondering if any other autistic person feels as normal as I do. I don’t feel like I am anything but normal. Anyone else knowing me might not think so but that is due to work.

The reality is I spend every day choosing between fighting for my civil rights or acting normal. I can’t do both. If I act the way that the dominate, able bodied men want I give up my rights. If I do not fight for my rights I will starve. Today I found out that Section 8 is no longer taking applications. This means thousands of people are going to be homeless. They are trying to close the program. Don’t we need more help with housing not less? I am tired of living in fear. As a minority, the disabled face their funding being cut. Do we have a choice? Yes. Is it a good choice? No.

What is the reality of choice? The reality of choice is simply that there is no choice. If you are disabled and able to push for legal accommodation it is a duty. You might not like that idea, but, think about it. Every time someone oppresses you, they oppress a dozen others. Every time you fight back and calmly advocate for your rights there is a benefit, there is a decrease in the oppression of others.

I do not know any disabled person who is unaware of their oppression. Those who face the fear of institutionalization. Those who have the memories of it. Those who try to ride a bus. Those who try to buy groceries. Those who wrok. Those who want to work but are not able to train for the job due to discrimination. All levels of intellect and worldly awareness. We all know we are being oppressed. We might not know the words for it, but the feelings are there. We all feel the changes when someone becomes educated as well. We all benefit from even one moment of advocacy.

I often hear parents disparaging their disabled children with in earshot. Sometimes they do not bother to try and hide their loathing. They all want a cure. This is very common with autism. The people wanting a cure want me to die. I would not be me without my autism. I am not sure what the suffering is that I am supposed to endure. All of that suffering comes from outside. Some of it is not actual violence against my person, some of it is just the experience of the world itself. It can be painful. Most of it is however the doing of man. My parents sending me away because I was different, drugging me to try and make me appear like they wanted. This was painful. It still is. I am familiar with pain. I am not finding any specific pain that Autism caused.

Some people may feel pain. I know that some autistics are violent. Some harm themselves. Instead of curing the entire mind, throwing out the person, shouldn’t we focus on trying to help them to learn how to not hurt themselves? Spending years without a diagnosis because I could do what it took to not die, I could blend, my perspective is different. Who would I be with a diagnosis and proper developmental treatment?

That is the reality. I chose to blend in. I choose daily to advocate. I choose every moment. I am hyper aware of my choices  but are you? What is the reality of the choices you make? Do your choices oppress someone else? Do your choices free someone else? What balance can you offer the world by making good choices? This is the reality of choice.

Saturday Silence

I locked the cats out of my room. It was a moment of great opportunity. One was in the litter box, the other was chasing a lazer beam up the wall. The door was shut and with that I curled up, letting myself drift out on waves of exhausted sleep. I crashed early. Due to years of insomnia six hours is good, but, the peace of living in safety, with someone I love, and knowing I can shower whenever I want? I haven’t had any trouble getting to sleep here by four AM. It still bothers me when I have to be up at eight and I am staring down the clock but I can function for three days on four hours. It is nice to not have to.

I dreamed some really interesting stuff last night. I had a giant pink robot a bit like Voltron but, this one had Catnip Canons and Anti Allergy Grenades. In my dream I could destroy everything I was allergic to. I did, and became the greatest super villain ever! I kept giggling in my dream because it was just too fun to blow up cucumbers, though, eventually everyone else was just as hungry and bored with my diet as I am. That is how bored with my food I got. I dreamed of destroying your food, so you could share my boredom. In the end I re-engineered foods that we could all eat, though most of them tasted like tea and pomegranates. The Pomegranate is the one food I have no issues with.

I could live on pomegranates alone, if they were a year round fruit and not so expensive. Their rich flavour, followed by an improvement in pain level, a need to not take pain meds for two days if I eat a half, a week if I eat the entire thing, and the grand finale? No allergic reactions what so ever. This is the fruit of my dreams in my reality. I want to visit them in their native territory someday, gently petting the tree trunks, talking to my future dinners. Celebrating them in their nascent state.

It is quiet this morning. My neighbor is not vacuuming, though that is actually cause for alarm due to her constant need for clean. There are no screaming children. There are no car alarms. I did not wake up with random Batsignals on my forehead, and locking the two cats out only made them super snuggly. I like quiet. Apartments are rarely quiet. Upstairs neighbors walking, the floor/roof creaking as they do. It always sounds like they will fall through squashing me into oblivion.

I didn’t hear the whirl of technology either, just this pleasing idle. Despite the upheaval of yesterday, there is peace to be found. I also do not have to deal with any doctors or idiots today. Tomorrow I visit my mother, and although that will be exhausting, it is a day of peace. We’re eating at her house, I am picking up some gear for a speech, and I get to see my beautiful siblings. I ask permission before posting people’s faces on the net, but if I can get it I wish to show you my gorgeous sister and my super tall military minded brother.

B, my sister, is tall and graceful. She has the body for modeling, and not the plus size modeling that I did. She is the epitome of desire set by the media at this time. She is not trying and often is embarrassed and teased because she looks like a barbie doll or a porcelain doll, depending on her outfit. She has long platinum blonde hair, big hazel eyes, and will do greater things than modeling for her career. She chooses her brain over her body. “Kat, I am pretty now but what if I fall off Dixie,” Her horse,”and wind up in a wheelchair like you? They don’t want wheelchair models.”

She desires security over fame and fortune. I wish I could tell her that it could never happen to her but our mother almost broke her back falling off of a horse, and B knows all about Christopher Reeve. My grandmother screams it at her every time she finds out B has a horse. She might actually be forgetting, but with her it is hard to tell if it is just a desire to scream at B.

A is my dreamer. I am a bit possessive. They are my A and B, and I do not share well. He is nearly seven feet tall, and has recently begun to pursue his dreams by joining the ROTC. He looks good in uniform, but, for some reason when he wears the uniform he actually looks his age. He just turned 16 and has his license. Be afraid. He is prone to day dreaming and with undiagnosed medical issues, there are consequences. His father forbade diagnosis when he was younger, trapping him with a future that is bleaker than he realizes.

In my Saturday Silence, as the world drifts on, sleeping late today, I have a clear view of the future, of the past, and of the moment. I meditate on things, and I know that yesterday merely gave me something else to fix. I am no longer angry about losing out on my dancing, teaching, and other physical careers. I have something more powerful than what I would have had if I continued on the path of physicality.

Dancing makes a difference for some, I could someday dance in a movie or a music video, I could have a great career. Advocacy gives me time to breathe. Even when the pressure is on and there is fear fueling my fight more than strength, when I advocate I know exactly how much power I have. All of it. I do not feel weak when I advocate, no matter how tired I get. I have a sense of purpose that is hard to match with other goals I have had. When I advocate it is with the knowledge that I am changing the world. One tip of my hip, a slight twist of my leg, a rolling display of muscles and the freedom to shake and move, that held personal power. It felt beautiful. I felt deliciously free.

One phone call to the Governor. One conversation with a reporter. One word of support offered. One person made aware. A life of passion. This too holds power but it is the power of change, the power of equality. After sleep, after finding that I am not as alone as I felt, I am empowered in my moment of silence. I play out the moments when I nearly failed out of fear, the errors others made and that I made in this fight. These are armor.

If I recollect and prepare the times when I have been threatened, I am prepared. It is oil on my armor. When I remember what words worked, that is sharpening my sword. Saturdays of silence are not silent. They are just times to reflect and prepare for the next battle in this war. I hear the birds singing, and I know that the fight will be long and hard. I also know I will win. I may cry, I may bleed, I may wish to flea, but in these moments of solitude with my peace held in my heart I know too that nothing can stop me. I am changing the world with every word, every breath, and it is too late to go back now. The world is already different because of actions that I have taken, that you have taken, and the actions of the future will just give us more strength.

Sharpen your swords, care for your armor, feed your companions. Feast and Celebrate. Enjoy the moments of peace and silence. We are at war. We are an army, an international one at that, and nothing can stop us for we have nothing to lose and only the world to gain. Lets rule the world!

Calling all Politicians

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

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

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

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

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

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

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

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

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

Super Cripple #2- Secret Origins Special!

I have spent several years being Super Cripple, I learned how to act like I was perfectly happy even when beaten, tired and exhausted because of a neighbor. This is another one of those happy attempts, yet it is also colored by darkness. I did not even remember him for a long time, my brain shutting down too often, trying to erase my biological father from my life. When I remembered him, it all came back and I cried. I did not just cry but I cried for days, mourning the years without the knowledge of what made me become better than I could have been.

It was a dark and stormy afternoon. The clouds were thick in the sky and a blast of lightening caused a loud clap of thunder. I dropped the glass of milk in my hands and spilled it. The cup was fine but I knew my father was going to hurt me. He worked for himself, which really meant he slept all day and all night. I was making lunch and had been going to serve it to him on the couch. I had burned myself during cooking but the food was not burned so it was fine, and I knew that my father would be angry if he found out about the milk. I tried something new. I refilled the glass, carried the plate and cup to him, and then went and cleaned up the spill. Then I told him I had spilled the milk.

The end result was just as violent as the other times I had spilled something. I was also locked outside, because of course telling him meant I had to be hiding the spill, I must have done something worse. I remember being relieved that the tears blended with the rain. My neighbor came home, his car was a bright blue with green accents, a classic 1957 Chevy. I always loved watching his car, imagining what it must be like to ride in it. He stepped out of the car and looked over at me sitting in the rain.

His steps were uneven, he limped and huffed a bit, it sounded as if he hurt. He crouched down and looked me in the eyes. I remember his voice being the first that I had heard which held an accent that did not match the one my own has. I was curious. I was also afraid to answer him. His voice was soft, warm, and inviting, “Are you locked out?” I just nodded. “I can open door?” I shook my head no and squeaked out, “I’m in trouble and he’ll kill you!” I was afraid my father would hurt the nice man. He smelled like candy. I also thought he was as old as the God that I believed in at that time.

He smiled, and I remember noticing how many teeth he had. I thought all old people lost their teeth. He was elderly, he was 74 and I was merely 4. He stood up and took my hand, “We won’t tell him you came with me. When do you get back inside?” I answered, knowing the answer from practice, “When my mommy comes home I go to the back door.” He nodded and we walked to his house. His wife wasn’t home yet, so it was just me and my Sensei. I do not know if I ever learned his name but, I did learn other things.

That first day he did not call me any names for being wet, to him it was logical, a girl is outside her feet will be muddy and she will be wet. Instead he wrapped me in a thick towel that was soft, my skin didn’t burn after touching it. It too smelled sweet. He helped me get my shoes off, taking his own off. “In my house we go barefoot.” I thought this must be heaven. I had died, the lightening and thunder had to have squished my brain.

It was real. He took me into his living room. There was no television set, just an old radio and a lot of books. “You read?” I nodded yes, and he asked another question, one few people think to ask. “You like to read?” I hesitated and answered with words, “Only if I pick, but I am not allowed to pick.” He frowned and left the room. He brought me a yellowed comic book, the cover had a yellow sky, a man in a weird costume with a cape and a pointy headed mask was hanging on a rope, choking someone. “You read this. You not like, we will find you something else.” I nodded and opened up the issue of Detective Comics #27. Not only was this an original and nearly mint copy of the issue with Batman’s origin but he handed it over without hesitation to a sopping wet toddler.

Detective Comics #27 Cover - Batman Swinging on a jump line, guns aimed at him, a bad guy in his grasp. Total awesomeness

I delved into the story, and I was hooked. Batman had so many lessons to teach about healing from trauma, even in the Golden Age. Also, suction cups are still awesome because batman walked up walls with them. He interrupted my reading to ask if I liked tomato soup and cheese sandwiches, I had no idea so I shrugged. He smiled and carried in on a silver tray, in fine china bowls with silver spoons two bowls of soup and two sandwhiches without their crusts cut into halves. He had even added some cheddar cheese to the tops of the soup. I put the comic down as he handed me my share and asked him, “Why do you talk funny?”

I was forgetting to be afraid. He felt safe and I liked it here. I did not want to ever leave. “I am from Japan.” I had never heard of Japan and as I ate my soup, which became my favorite thing in the whole world, it still is and remained so even through the suppression of these memories, I listened to his story. It was not happy and yet, it shaped him into the kindest soul I had met.

“I was born in a small town outside of Tokyo which is a very big city. My brother had come to the United States a long time before I did, he had a house and wife, and talked often of how Japan sounded on the television. There was also forced enlistment in the army. I would have to leave my wife. I did not know if I could live without her. She and I were forbidden to wed but did, our parents punished us for it by disowning us.” He paused there to explain what being disowned meant, to me it sounded fabulous. “So, I came to America. The war had started, just after getting on a boat to flee my country, Japan attacked Pearl Harbor in Hawaii.” He had pulled out a map and was showing me the different locations. I hadn’t even heard of Hawaii before. “American Citizens who might be Japanese were locked in camps.” I knew about concentration camps, my father often referenced how much he wished he could gas us. I hugged him, my very first time hugging a stranger. He held me and finished his story. “One of the soldiers watching our camp, it wasn’t like the other camps in Europe,” Another bit of map pointing for my benefit, “He gave me his son’s comic books after the boy was done. He shared them with us to try and help us endure. I learned to read english, as did many children. This was my first comic book. I still read them.” This man had kept the comic books through an internment camp, through a long life of struggle.

I knew they were valuable based on that. He ruffled my hair, which had dried out and asked if I wanted another sandwich. I did but was afraid to say yes so, instead of lying I just shrugged. He brought me another sandwich. “You are allowed to want more, if you are hungry. I want to share.” I smiled. I don’t know if I ever had before, but, it felt strange. I finished the first issue and a second, he then went to find a third but it was late and my mother’s car drove up. We wet my hair in the sink, it was still raining, and he helped me through his back yard, it was a paradise of flowers, and despite not wanting to leave I went to the back door.

My father had no idea. In my mind as he helped me climb the fence, I was bat girl. I didn’t know batgirl was really in the comics yet, but, I imagined I was swinging through Gotham city which I was then pronouncing Got Ham… Before we parted ways he told me to come back when I needed to. I ate my dinner, and went to bed in silence that night but I had something to imagine. I imagined fighting crime. I imagined how it would feel to be a grown up and a crime fighter. I suddenly wanted to be a cop.

The next day, and the next, I would sneak out when my father took his nap or I would go for refuge if I was punished. Every day he fed me a bowl of tomato soup and we read comic books. Eventually he apologized to me for not having any Wonder Woman comics, because he gave those to his daughter when she entered college. Despite his heritage, the teachings of his culture, he treated me as a human. There was no sexism I could see. His wife had a job, he was retired. I believe he was a teacher, but I do not know. Sometimes we would dress up, the soft bed linens he used would turn into capes and we’d go through an imaginary Gotham City arresting teddy bear villains.

He asked my name many times and I never wanted to tell him. I was afraid, because my father and mother tended to only use my name when I was in trouble. That was often, as I never could please them. My mother was working three jobs, trying to feed us and my father just found fault with my existance. My Sensei, as I began to call him taught me more than just comics or how to imagine and play. He also began teaching me Japanese. He helped me to master the art of chopsticks and gave me etiquette lessons. He taught me to dance as well, sharing things with me from the world he lived in. Giving me glimpses of a golden age of love.

I too recall his hands. They were knotted with arthritis, now I know the rain likely pained him yet it rained often in those years. He never showed his pain, he was always well dressed, kind, and never yelled at me. Not even when I tore a page in Batman #1. He never made me pretend to be Robin, and always liked pretending to be my Alfred. Those hours of kindness turned into days, then years. In that time, I did share my name but instead he gave me my first alternate name. I was to call him Sensei, as I liked the word and gave it to him as a title. He was happy, and held me close telling me he was honored to be my Sensei. I was his Little Lotus. I asked why.

“You are a flower, all children are. A lotus has many layers, it has many petals. Never let anyone tell you what you are or what you can be. Like a lotus you are special, you are good and kind. You are smart, and you will be someone important. As long as someone loves you, and I do Little Lotus, you will be important to the world.”

I never asked again, but I cried. He loved me. I loved him. I was six years old when we got caught. I had already endured rape, molestation and trauma. My neighbor, a teenager, had violated me as had my father. There were times I wanted to reveal that I had my very own Batcave. I kept it a secret. I was afraid, as we sent one man to jail, that my father would send another off to prison.

I testified against the young man, I imagined I was batman, putting a criminal away. It was the only reason I could do it. When he was out on Bail he came and knocked on my window, sticking his hands under to lift it up and tried to get in. I pretended I was batman again. I slammed the window shut and screamed. This was the only time my parents acted as parents should. My father did this to hide his own crimes, my mother out of the true pain she felt at seeing her babies endangered.

The day we were caught was one where my mother came home from work early. She was either fired or just sick, and I did not hear her car. I had fallen asleep with the latest issue of Batman, finished superman and my Sensei was making tea in the kitchen. I woke to hear my mother’s voice screaming, “WHERE IS SHE!?” My name yelled out. I did not think, I thanked my Sensei, slipped my shoes on and went outside. There were accusations, my father grabbed me by my hair. I then saw who was truly Batman. My Sensei came out, removed my father’s hands from me and said quietly, “Little Lotus, go inside.” My parents were shocked, my father sent my mother inside as well, though she tried to follow me.

I locked the door and peered out the window, watching and listening. I could hear every word. My father accused him of being a rapist, a pedophile, and a monster. My sensei pointed out that due to his age he would be unable to rape anyone, and that he enjoyed teaching me how to be a kind and caring adult. He insisted our afternoons continue, stating that we had done this for years. My father went sheet white at that revelation and called him racially unjust terms. He lifted a hand to hit him. My sensei defended himself, blocking the blows and not retaliating. “She is a good girl, you treat her poorly. I see the bruises. I see them. I have reported you many times to DCF.” It was true, no one knew who it was that kept the government coming but I had lied every time.

The argument went on for an hour, in that time my Sensei’s wife came home, finished making the tea and sat with me at the window watching. She was just as influential as my Sensei, and I will always remember how she smelled of Jasmin and how I thought she was the most beautiful woman in the world, her long hair mixed with greys and black always was styled nicely and she dressed not for others, but for her own comfort.

That was not the last afternoon of my super hero afternoons, it was merely the only time we were caught. Until we moved away, my parents marraige in tatters I saw him almost daily. We shared the comics, other books, and he continued to teach me how to live. Without him I would have been in more pain. He too taught me ways to heal. Things that stayed in my soul when my mind deleted them to survive.

I started out as an imaginary side kick, and often when I am exhausted I imagine too the sounds of a cape in the wind, the feel of my body dancing with criminals. I am a Super Hero. I am Super Cripple, and this is my origin story.

*Side notes*

DC comics owns the rights to the image used in this post. They are also the inspiration for the post title. As you read this, there may be some comic book references that are slipped in. I am a comic book geek and proudly so. I hope you enjoyed the Secret Origins Special.

Pancakes in my Shirt

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

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

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

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

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

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

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

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

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

The Burning Question about… Hygiene

Hygiene. Every human has it, some may not know what it is but bathing, daily needs. Each person has a right to be clean, healthy and happy. My journey to self acceptance included this tidbit. I deserve to feel beautiful. Right now I feel my after shower queasiness. I feel the stabbing pain, and have a nice new burn. My cold water lost pressure, I turned it off after the shooting pain of being burned hit, the shower head thrust against the wall. My hands grasped for the proper knob, the cold should be on all the way, the heat grows, I turn off the hot water, there is just a dribble of scalding liquid now, the cold is on all the way but no one is home. I feel the rage welling up in my chest. This is my shower for who knows how long. This is my time to get clean, to feel beautiful, to wash the layer of sweat and pus and blood off of me.

Then, I realize, a child could shower and have this happen and be injured severely. I get madder, and am definately going to talk to my landlord about this. I must advocate to find out why I was burned. Not only was I burned but the burn is under my stomach roll. That area is difficult to keep dry, the HS makes it harder too because I have an outbreak. The skin is fragile. I am temperature sensitive to an extreme as well. Why do I not question that this water is scalding? I must trust myself to advocate. I must also trust my body to tell me when the pain is worse than the pain of regular water. It helps that my skin is red and tender. In life second guessing yourself is defeating yourself before anyone has a chance to try.

I burst into tears as a result of the added pain. I was already at my limit, dizzy before I turned on the water. I have to bathe today, it’s been too long and my mind was suffering. Doctors always reprimand me if I am not clean enough. My mother used to as well. She would tell me if I could smell myself then I was dirty. I always smell myself. She shamed me for playing in the dirt, she shamed me out of the shame she herself faced. It does not excuse it, but without an understanding of what happens to the body and why things are the way they are, there is less understanding.

I bathe twice a week. So far, I have felt clean most of the time. I regret the lack of beautiful hair this can sometimes cause, but, that is the biggest concequence. Why do I bathe so little? Especially when I have a disease of the flesh that causes boils? Two reasons. One, passing out in the shower is extremely dangerous. I do not have the urge to kill myself. I have learned when my pain is too much and so far I have not been wrong about the fainting thing. If I might faint in the shower, I usually come near to passing out without getting wet. Water causes me pain. I do not drink it, because it makes me sick, and putting it on my skin feels like pouring flaming acid down my body. Redundant but very painful. The other reason is that when I started bathing less, I stopped having outbreaks daily. There are times when my skin is closer to clear.

Bathing strips your skin, at least it does mine. It hurts, and often I feel beautiful even if I have not scrubbed myself that day. My skin is healthier. I do not really see a downside, except when the pain prevents me from bathing when I have sores. Sponge baths fail me, though, I am working on new ways to be clean anyway. As an advocate at times I will force myself to endure the shower knowing that either that day or the next afternoon I have to be Ultra Presentable. This is the Super Cripple thing. Super Cripple is always well manicured, bathed, and has her hair coifed. Regular person with disabilities? Not so much.

I cannot bathe without assistance from my person and my care giver. He, since they are both male, helps me in and out of the shower. Sometimes he has to do the cleaning too. Usually this comes from my sleeping late and facing my daily paralysis routine. I wake up unable to move. Sometimes I cannot breathe enough. If I have to do the force bathing, this is when I must most of the time.

I was also taught that wearing underwear makes you a good person. This is a huge paraphrasing of events, and words. I hate underwear. Panties and bras do have a purpose, but I hate them. Lets start with Bras. They have never supported or fit right. I am not sure they come in my size, and when I hit the specialty store, the little old lady always tries to sell me something, but in a few days it shreds. When I wear a bra I always have four breasts, which means it doesn’t fit. I then wind up with giant raw spots and bigger boils and abscesses during out breaks, which never end. Bras have elastic. Have you ever known elastic to not contain latex? Me either.

I do like the look of my body with a bra, but the pain of my breasts pulling on my shoulders and back is enough without stacking them into a confined space, changing the weight distribution. Last time I did that I lost another vertebrae. My breasts have caused me to develope scoliosis, my doctors theorize too that my back would not have broken if I did not have such large breasts. By now you are wondering just how big they are. Me too. I need to remeasure. Last time I measured I was a 42 inches around my underbust, and at the thickest part of my non bra wearing self, I had 56 inches. They got bigger. I do not know if they make bras that fit.

I want a corset. If I won’t wear a bra I would hate a corset right? Hardly. I used to wear them for work. One of my jobs was reenacting as a demure civil war maiden. The corset was made for my body, and I always had extra energy after work. Sure I was a bit tired but I felt so good, and my back never hurt. Corsets also work as back braces, and some insurance companies cover them. Not mine, they don’t cover a regular back brace. I am appealing this, because I have a prescription for one.

On to underwear. They too have elastic, and my skin just peels off in sheets. Have you any idea what it is like to have your pubic region inflamed? Burning and falling to pieces? Blisters all the time, worse at times when the HS was responsible, but always a blistered burning, raw pain? When I wear panties I do.

My mother used to tell me that not wearing panties would make me into a slut. Sometimes word for word. She was trying to make me safe, because girls who do not wear panties are easily attacked right? Someone might see your girly bits too. I am not mocking her concerns, but, I still don’t wear unders. I used to get to school, pop into the bathroom and take them off. I was terrified I would become a slut growing up. In High School that all changed, when, I realized that the slutty pregnant girls wore underwear. My fear of the sluttiness faded. Most of my High School class wound up pregnant before Prom. They all wore underwear. They used to talk in class about what kind they had on. Underwear is not a slut preventative or a cause.

Some underwear is better than others. Just my Size has a really great french seam over the elastic, so, I can wear them in moderation. i save the panties for short skirts. I feel less inclined with pants, than ever. Some pants are bad for no underwear, so I just don’t own them. I stick with soft fabrics, and so far I have not had yeast infections, blisters, and the like from no panties.

Humans judge one another on their Hygiene, the requirements change annually. Now the requirement is a nice powdered face, tom marrow it might be silver eye make up. The point of these confessions? My hygiene is mine. My body is mine. I am a good person, and, no matter how much I clean I cannot scrub disability or humanity away. Neither can you.