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.

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

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.

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