Bruised and Broken

Bruised and Broken

Tattered and Torn

All of the pieces lay on the floor

This abused heart bleeds out alone

All she needed was a ring of the phone

The simple way out, where breath not dare

Finally her eyes give in to a black stare

Misused and Misled

Pale and Passed

The mirror in which she practiced her mask

Around her are the shards of glass

The grains of wood take on a different tone

Perhaps she would have thought differently if only she’d known

The lives she took were not only her own

 

Weeping and Weary

Lonely and Lost

He just now finds out love comes with a cost

With the blood on his hands, he knows this is real

Too late in realizing the pain she could feel

The words, the laughs, it was all just an act

Thinking back now, he remembers their pact

Determined and Deadly

Frightened and Fierce

The confidence doesn’t hold back the tears

Knowing they were stripped away from all the years

The blast of his life leaving his body

Next to her he lay

Forever in their sweet decay.

~Eponine Josette

 

(This poem is very old. I wrote it almost a decade ago. I’m not suicidal. I just think it’s beautiful and I’m very proud of this piece.)

Even in Rebellion, You are Mine

“I live in you, in your bones; the delicate coils of your mind. I made you. I formed the thoughts you find, the moods you carry. Your blood whispers my name. Even in rebellion, you are mine.”

I wanted to bring up this quote because ever since I found it, years ago, it’s always spoken to me. Originally it’s from White Oleander by Janet Fitch. It’s an excerpt from a letter from the main character’s toxic mother. And while it works perfectly as that, I’d like to look at it from a different view. For those of us who suffer chronic illnesses, specifically ones that are genetic.

Our bodies make us, our genetics help make up who we are. We can’t get away from it, no matter how hard we try. When our genetics leave us with diseases, it is a burden we can’t get rid of. It’s in our bones, our mind, everything. We can do what we like to try and escape this. All of our movements, Cripple Punk, Hospital Glam, Disabled NOT Invisible, etc, they are our rebellion. It is us acting against our bodies. Finding beauty despite our challenges. But alas, even in rebellion, we are trapped.

This isn’t to say rebellion isn’t important, because it is. Very important. It opens up the eyes of the able bodies of exactly what our lives are like. That there is still beauty in things that shouldn’t be beautiful. We are changing the mindset and the views against disabled people. Society has always been against us, and this is our way of fighting back.

I know some won’t agree with my way of thinking. That we are more than our disability, which is true by all means. We are more than our disability. But when you’re faced with the struggles we face on a daily basis, our disability is a big part of who we are. We have to plan around it. We can’t go out and enjoy the day like everyone else. We have to be careful. Count our spoons. Make sure we don’t push ourselves too hard. Please, see us as people. Only don’t forget that our limitations are real and we need help with it. Don’t look down on us because we need help. Any type of help, be it chemicals, mobility aids, ramps, captioning, descriptive audio, glasses, therapy, etc. Every type of accommodation is worthy of respect and is needed. We don’t ask for these things because we think it’s fun. We ask for them because we need them.

It can feel like our bodies control us. We have no say in the matter. And it’s perfectly okay to feel this way, just try not to get caught in the mindset. Acknowledge what you need and that your body may be in charge sometimes. Also realize that you are a wonderful person deserving of care.

We are the rebellion.

~Eponine Josette

It’s been a night

There’s been a lot of people jumping on board with the “accept mentally ill people” bandwagon. Which, by all means, is wonderful. However, they forget key points that they have to be supportive through everything. Neurotypicals can normally understand what it’s like to be anxious, sad, depressed, to an extent. But when other symptoms start showing up or the ones they understand take too long to go away, they stop being supportive.

From my personal experience, I had a friend who was one of the people I was the closest to, and had known her for most of my life. We’d been through a lot together and I trusted her more than most people. She experienced some depression along the way so she could understand part of what I was going through. But when what helped her depression didn’t help mine, she started to treat me differently. Going as far as to say I wasn’t trying hard enough to be happy. The second she said that, I lost my trust.

When someone struggles with mental health problems, it’s not because we aren’t trying hard enough to be better. The chemistry in our brains is literally different from everyone else. I had C-PTSD at the time, which I didn’t fully understand at that point. Still in the process of getting diagnosed but there’s also possible borderline personality disorder as well. Point is, things like that can really get in the way of your thinking. Intrusive thoughts are not under your control. So when you tell someone to just snap out of it, they are probably already trying to. No one likes having intrusive thoughts. But when you tell us to stop thinking about it when we’re already trying to and we can’t stop it makes us feel like we’re doing something wrong. That we aren’t good enough to just make it stop. This applies tenfold when in reference to suicidal idealization.

Everyone experiences being depressed at least once in their life, and it makes them think they know everything about depression. It’s not just feeling sad. It’s not having the will to take care of yourself. How many days can you get away with not talking to people? How many days in a row can you wear the same clothes? Surviving off of one small meal a day, if that. Only getting up to pee. Waiting too long to get up to pee and getting a UTI. Your house becoming a mess without realizing it. Wanting to talk to people but knowing no one wants to talk to you because you can’t hold a normal conversation. Thinking about subtle ways to push everyone in your life further away so they won’t miss you as much when you finally disappear. Barely having enough motivation to leave your house. Being teased at work for being a downer. Feeling like your body weighs 1,000 pounds.

I was going to go through all the normal depression, anxiety, etc. to explain what it’s like. But there’s been a lot of awareness on that lately, so I’m going to assume you know the basics and head down to the scary stuff.

Hallucinations. Visual, auditory, and sensory. (Which are groups I just now made up but I’m pretty sure they hold merit) The first time you experience them is terrifying. Everyone has different reactions that also depend on how old you are. If you’re younger when they start happening normally you’ll tell your parents or an adult and they say nothing’s there or it’s in your head. This is very harmful because the child is already scared and doesn’t know what’s happening. When you tell them it isn’t real/they’re making it up they can’t tell you about it if it happens again and they start keeping things to themselves. This leads to a lot of internal conflict and prolongs understanding and help.

  • Visual hallucination: Things you see
  • Auditory hallucination: Something you hear
  • Sensory hallucination: Something you feel/smell/taste

You can have one or a combination of one or more. As a kid I would have all three types. Not normally all at once. I would wake up in the middle of the night and feel bugs crawling on me and see them running away when I would pull off my blanket. Or see my room full of smoke. I’d run and get my parents and they would always tell me it was in my imagination. And to be fair, I had a very good one as a child. But I didn’t understand how these things could be happening if I wasn’t making them up in my head first. Another time I was sleep walking and started falling down the stairs and when I got to the bottom I thought I saw an angel or some other religious figure (my family was pretty strongly religious while I was growing up). Another time I thought I saw Jesus. But now that I’m older and have done my research, I realize religious hallucinations are very common. Now I mostly see shadows, animals, hear things. I’ve been lucky enough that it hasn’t impacted my life too much at this point. It’s still scary when it happens and I have to ask people if certain things are real sometimes. If I know I’m having a bad day I avoid driving, though. I’ve seen children in the street, roads end when they actually didn’t. Between paranoia and hallucination I’ve ended up on the shoulder of a road crying after swerving. These things are not okay by any means, but I have a life to live. People don’t understand, you learn to adapt. To be supportive, if someone asks you if something is real tell them the truth. Lying is only going to hurt us more and/or make us more paranoid, anxious, stressed than we already are.

Rage is another common one. Rage from mental conditions can be caused by a number of things. PTSD often comes with bouts of rage. Then there’s also autistic meltdowns. My parents didn’t believe in doctors, so I spent my whole life with multiple untreated chronic conditions and autism. I would have very violent meltdowns due from stress in an abusive household. I could never understand why certain things were happening or why people were upset with me. Growing up around very abusive and manipulative behaviour, that was what I turned to. They hurt me, so I would hurt them back. So often I didn’t even know what I was doing. I would realize it later and start crying because I hadn’t meant to react that way but I didn’t know how to control it. My parents would only make the situation worse by adding more stress by threatening to lock me up, call the cops, not give me essentials to survive, lock me out of the house, hit me, etc. I know part of that was because they couldn’t understand what was happening to me, but it still doesn’t give them an excuse for some of the things they did. Thankfully I’ve mostly grown out of meltdowns/know how to control them. Rage from PTSD is a little different. It’s more controllable in my case than my childhood meltdowns were. Mostly consists of yelling, swearing, and the typical seeing red. It can be over the tiniest thing that shouldn’t even matter and yet somehow it’s bothering you down to your core. Now I understand this can be a lot worse for some people and some get dangerously violent during an episode, but you can still be there for us and show support when we aren’t a threat. Or if you can tell it’s building, calmly talking us down or rationally talking about things.

Paranoia can have such a wide range of things, it’s very hard to explain. It could be something tiny to something big. Very realistic to not realistic at all. But you have to remember, in our heads, it’s real. It may not make sense to you, but you need to treat it like it’s real to us and help us get through it. Whether that means checking an empty room to make sure there’s not someone waiting to kill us to double checking to see if we put the milk away even if you watched us do it. Of all my symptoms, paranoia is the worst. Because of everything I’ve been through when I notice red flags it throws up many warning signs for me which then turn into things that could happen and then the things in my head become real. It takes time and patience to work through what is and isn’t real.

There’s a lot more I could go on to say but I’m now pretty drained, so I’ll continue this in another post.

But the whole point is, you need to be around for us even when it’s scary and you don’t understand. Because we don’t always understand either and having someone who won’t belittle us is very important. Don’t blow off our concerns and needing reassurance as being dramatic, it is crucial to our mental health.

~Eponine Josette

Let’s Have a Little Discussion.

For a moment I’m going to humor pro-life (anti-choice) people and their argument BUT the ones who say abortion should be allowed in only some cases. Specifically the ones who believe that a person should be allowed to abort a fetus if test results show the child will be disabled.

I’d just like to say first, if your conviction is so strong, why does this make a difference in your standpoint? If you believe a fetus is a person and the pregnant person shouldn’t be allowed to “kill” it in normal circumstances, then why does it change if the child is disabled?

You are very clearly not pro-life and also very ableist. You are saying that a disabled person is such a burden you should be allowed to kill it. That a disabled baby is worth less than a healthy baby. That one life is not as important as another, which is what you claim to be against saying that babies deserve to be born.

But that’s not even the scary part.. The scary part is that most of those people also believe that disabled adults don’t deserve to live either. They will openly talk about killing disabled people or just letting them die. Parents of autistic or otherwise mentally challenged children get away with killing them/letting them die by making their case about them. How it was so hard to take care of such a burden and how it impacted their life. And many times they get away with it. The lives of an able bodied parents being effected by a disabled child is more important than the life of the disabled child. People sympathize with a murderer rather than the murder victim.

This mindset that disabled children should be killed by people who claim to support life is contradictory at the least and encourages the harmful oppression disabled people face. If you’re one of those people, really look at yourself. Why do you believe parents should be allowed to kill a disabled child? I’m honestly curious and would like some responses to be able to make a follow up article.

~Eponine Josette

*Note: I am completely and totally pro-choice. Only the person with the body gets to decide what happens to the body.

Dystonic Drug Reaction

I had a pretty scary experience not too long ago involving a bad reaction to compazine. With EDS reactions are very common.

I was in the ER due to tachycardia and a severe migraine, which they got under control with fluids, compazine, benadryl, and toradol. Which is pretty common and known as the “migraine cocktail”, which I’d had in the past as well and worked nicely. This time they gave me a prescription of compazine to take home so I could create the same effect on my own without having to go to the ER.

Fast forward to the next day at work, I felt a migraine coming on so I take one. Within an hour my tongue started to feel funny, but not swollen. I felt like there was a twitch on my face that I couldn’t get to go away and then I realized half my face was starting to pull to one side and my speech was slurring. Obviously distraught, I told my manager at work something was wrong and I needed to leave. I called my mom, who could barely understand me because of the slurring and she told me to call 911. They sent an ambulance. By the time they got there my jaw started locking and I had a hard time opening my mouth to talk. They checked my vitals and my heart rate was close to 200bpm and blood pressure was a little skewed. They went over my medication list, which I had to pull up on my phone because I couldn’t talk. The muscles in my neck started pulling like the ones in my jaw had been and I was stuck looking up and couldn’t move my neck. The EMS were concerned that I was on Ambien (a sleeping pill), but I had been on that for six months and hadn’t taken any recently. I told them I had taken the compazine and just started phenegren and cymbalta recently which they brushed off as nothing. Assuming it was just stress and anxiety, they told my mom they really didn’t see a reason to bring me in and told her to take me home, gave me an ice pack, and left.

My mom took me back to their house to watch me. It continued to get worse and spread down my neck to my back and arms. At first it would come and go in waves. The ice packs would give minimal relief during the attack. When it would subside I was so exhausted I instantly would pass out until the next wave hit. I started doing research, while like this, to try and find any answers, anything that would make sense. The most I could come up with was seizures from the cymbalta. Which didn’t fully make sense because I was still lucid. This continued for seven hours and the time between attacks because shorter until I didn’t get any relief. It was one continuous attack. It had progressed so far down my back that I was stuck with my head bent so far backwards it touched my body, jaw either locked open with my tongue sticking out or shut while grinding my teeth because it was so tight I thought my teeth would break.

My dad got home and he had to carry me to the car because I couldn’t walk in the position my body was contorted. When we got to the ER they put me in a wheelchair and my body went from being locked backwards to being locked forwards. I couldn’t keep my mouth closed and spit started dripping out while I was trying to talk to the nurses to explain what was happening. My body had started convulsing at this point.

I was immediately taken back to a bed and the nurses helped me take off my shirt to get an EKG. They put in an IV and got fluids running. The doctor walked in while they were trying to get the EKG, which wasn’t working because my body was convulsing too much. It had spread all the way to my legs, my eyes were stuck shut, my mouth still unable to close with my tongue out, which made trying to talk to the doctor even more difficult. And while I’m glad my parents were there, they don’t know much about hospitals, medications, any of my illnesses so they weren’t any help. Within 5 minutes the doctor diagnosed me with Dystonic Drug Reaction and ordered benadryl. Seconds after the nurse put it into my IV my body started to relax. I was able to lay still enough for the EKG, I could open my eyes, close my mouth, talk. It was immediate relief.

The doctor came back after a hour or so to see how I was doing. They were debating holding me overnight to make sure everything was okay but we were able to actually talk now and he felt confident I would be okay. I talked to him about how the EMS handled everything and the doctor was pretty disgusted. Basically was Dystonic Reaction is, is medication turning into poison in your body. I had all the symptoms when the EMS were there and they should have seen it right from the start.

Unfortunately, sexism in the medical field is strong. A young woman with tachycardia, and trouble breathing is written off as anxiety and panic attack. Even though I told them about my conditions and that something was severely wrong. I have C-PTSD and panic attacks quite frequently, and I knew this was not that.

I was sore for weeks after the incident. I wasn’t able to work at all. My mom paid for a massage a week after it happened which helped, and also released the toxins that were left from the compazine hidden in my muscles. It made me feel really crappy for a little while, but also helped the aching of my muscles from being extremely tense for basically an entire day.

Dystonic Reaction is pretty uncommon, only happening to about 1% of the population. But that doesn’t change the fact that it should have been realized. Especially in someone with known medical issues. To this day I still have nightmares and panic attacks if anything feels similar to anything that happened that day. Something that isn’t talked about very much is how common it is for patients to get PTSD due to a traumatic health scare. The anxiety of not being correctly taken care of by medical personnel only makes it worse. If someone knows something is wrong with their body, listen to them. Chances are, they’re right. The patient will always know their body better than any medical professional. I don’t trust doctors who think otherwise.

~Eponine Josette

“Can I Pet Your Service Dog?”

Short answer, NO.

Service dogs exist because their handlers are disabled and require their help. They are trained tasks and to keep an eye on their handler in general. They have to be focused while they’re working. If you distract them, they may miss something very important and their handler can get severely injured.

This means no petting, talking to, making noises at the dog. They are trained to ignore you, but they’re still a dog and they can get distracted. “No Touch, No Talk, No Eye Contact” is a general rule to keep in mind for service dogs. I can not tell you how many times I’ve had grown adults bark at my service dog. And let me tell you, you look like an idiot. I promise.

Depending on the type of service dog a multitude of different things could happen. Here are some examples:

  • A diabetic alert dog could miss a high or low and the handler could faint, go into shock, etc.
  • A seizure alert dog could miss an alert, or alert too late, and the handler doesn’t have enough time to get to a safe place for the seizure to pass.
  • A mobility dog could make a misstep and cause their handler to fall or run into something.
  • A guide dog could walk their handler into something or put them in a dangerous situation.
  • A cardiac alert dog could miss an alert and the handler wouldn’t have warning to lay down and end up fainting and hitting their head.
  • An allergy alert dog could miss an alert and their handler could go into anaphylactic shock.
  • A psychiatric dog could miss an oncoming panic attack and not be able to get their handler stable.

Moral of the story, don’t make kissy noises. Don’t whistle. Don’t tell them what a good dog they are. Don’t bark. Don’t touch. Don’t even make eye contact with a service dog. They are medical equipment just like a wheelchair, cane, oxygen cannula, etc. You wouldn’t ask to pet someone’s wheelchair, don’t pet a service dog. And teach this to any children in your life. I’ve run into children who are more educated than their parents on service dogs, though. So maybe just share this with all your friends as well so we can get rid of the ignorance of the public.

Another side note, Don’t take pictures of service dogs and their handlers without permission. This is incredibly important. So many people take pictures without permission and first of all it’s rude. Second, would you want someone to invade your privacy like that? Having your picture taken any time you went somewhere? Not only are we stared at because we have a dog but now we feel like even more a spectacle because you’re taking pictures of us. Don’t do it.

Handlers rely on their service dogs and just want to live and go out like anyone else. Don’t bother them. The proper etiquette is to pretend the service dog isn’t even there. Remember, we are people. Acknowledge us first.

~Eponine Josette

Today I Looked Normal.

Today I looked like any other person. I went to work, I cooked, I exercised, I went grocery shopping. I looked like any other human being. What people didn’t see was the fact my hip was subluxing with every movement. That walking, talking, breathing hurt. They didn’t see me collapse in my bed at home, unable to even take off my clothes(because when you have chronic pain, even clothes hurt). They don’t see the light gone from my eyes. They won’t know it will take me days to recover. A “simple” day for a normal person can leave me bedridden for days, even weeks. It’s not because we aren’t trying hard enough. Our bodies physically can’t handle the same things. Never call someone with a chronic illness lazy for taking the time they need to recover. Not only does it make us feel like we aren’t capable of being normal, but it makes us push ourselves farther than we normally would and this can cause us to be in pain for even longer. We aren’t being lazy by staying in bed for an entire day. We are doing what our body needs, recovering. We are proud of the little things. Don’t try and take that away.

~Eponine Josette