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Epilepsy Awareness Day 10: Epileptic Dancing

Your Favorite Martian Techno’s “Epileptic Techno” is awfully prejudice, hurtful, and harmful. I cannot post the video. If you are light sensitive do not go find it on YouTube.  I accidentally clicked the link and then felt like I was dying. I read the lyrics and comments and was amazed. Lyrics

I have never seen a dance move that looks like an seizure. I watch a lot of music videos. One person chimed in to express how the video was not offensive, it is a joke about dancing and seizures. This begs a few questions. Is a video that purposely adds triggers offensive? Is a video that uses a cartoon character having a seizure as comedy offensive? Is the equating dancing oddly and having a seizure offensive? Yes, those are all offensive. They should not be normalized. If you want to tell a joke at my expense that is your right. Do not tell me its not offensive. It is my right to be offended. And if you got to say “I ain’t trying to disrespect epileptics,” your disrespecting somebody.  If it isn’t an epileptic then maybe someone with turrets syndrome.

The song is alright, its my genre. The chorus is catchy and it has a funny cast of characters. There were a few epileptics in the comments who really enjoy it. A few who had seizures. There was one line I liked:

I felt my muscles expand and contract
I passed out on the dance floor laying on my back
Reality started fading, cutting in and out

It is the one moment I can relate to. Its the last moment of consciousnesses, the floor, and the first moments of regaining consciousness.


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MHAM 16: The Struggle is Real

Topic: How has the stigma impacted you, and how have you fought it?


People don’t like being reminded that they are not immortal or immune to everything. So it is normal behavior to make it the “sick” person’s fault that they’re body is not in perfect condition. Even when the condition is genetic or result from something the person had no control over, people will find or make up a “reason” this happened to the “sick” person. Then the “healthy” person can say “that will never happen to me.” Then it is normal for the “sick” person to be push out of the social circles. The “sick” person becomes a “downer” and most don’t want them there.

There are a lot of stigmas that impacted me and I could go on. It becomes amazing how labels, stereo types, and such impacts your life the moment a symptom enters your life. And how those make drastic changes in how others see us, how we see ourselves, and how we are allowed to contribute to society over night. So I will rant about a few.

I was a theater major when I got sick. I was honest with my professor and turned down a leading role. The next play I was second lead and I had a few migraine episodes while other students were being jack-asses playing with the lights. (At this point I had not had a seizure yet.) After that show everything went to hell. I lost my job in the workshop and I wasn’t given a part in the next play. I had to do both of those things to keep my scholarship. It went as far for a professor to give a lecture about the importance of staying healthy in order to give performances and do well in acting classes. I went from the best in the department to the outcast in a few weeks. A rumor spread that I was diseased and wouldn’t be able to hack it. And then one professor was surprised her best student dropped all her classes…

In school I was told constantly that I couldn’t do it, I was going to flunk out, and I needed to drop. Why? Because sick people are not able to think critically, learn, pay attention in class, concentrate, or perform academically in general. They also drag down the class and make classmates uncomfortable. Sick people should not live on campus because they lack the skills to care for themselves. So, a sick person is stupid, inconsiderate of your feelings, and should be invalids? I fought it by living on campus, having a kick ass thesis, getting a 3.6 gpa, and being awarded a scholarship to graduate school. There was a bet on if I would make it through my thesis presentation. I encouraged it. There was standing room only. A friend of mine made a killing. I fought the same crap in grad school. I fought it mostly by having a kick ass thesis and getting a 3.6 gpa.

I am a druggie. A druggie is “a drug addict” or a person addicted to a specific substance, typically illegal. I am dependent on my prescription medication. I need it for my brain to function properly.  If I stop taking it, my body will have an adverse reaction. Prescription medication is illegal without a prescription. Would you like to see my prescription? This is a major problem with having to take medication in public. Suddenly I am explaining to strangers what I’m taking and why so they do not call the police. Would I really be popping illegal pills after an alarm went off in public? Stranger, if this looks like an illegal drug, how do you know? I’ve never seen one…

Why am I a unemployed bum living in my parents home? Maybe because I can’t live on my own and I do a lot worse when I work. Why don’t I have an online job? Please help me find one that does not require me to be on the phone or type all day or that is not a scam. What is that, no? I am in a lot of pain, pain makes it hard to function because it does this to the body (insert list) which make it hard to function. The doctor agrees it would be hard for me to work and I shouldn’t work for more then 10 hours and that if I do work it (insert list). Long educational talks that are repetitive and they don’t listen to anyway because most people just wanted to say “Your lazy, should be working, living on your own, and need to stop being a burden to your parents.”

Why are you working being a pain in our ass? Because I need to pay bills? I’m told I need to stay home and live off of disability. That I am too sick to work. My pain makes me unreliable, bad worker, undesirable, disabled, need a better doctor, I must be lying about seeing a doctor, I don’t eat, I eat the wrong foods, I don’t sleep, I must


have had a brain injury I am lying about. It was crazy the things I herd and was told. I fought back by not quitting. I decided that my bosses were going to have to fire me. But each time I ended up quitting on doctor’s orders. Oh it is so annoying.

This is how I slowly watched my world change. How I saw my friend

s dwindle, place in society change, my roles shift, other’s expectations from me disappear, my dreams go out the window, my future change. Because of physical limitations and stigmas.

Check out for other entries http://www.migraine.ninja/2017/06/education-needed-to-combat-migraine-and-headache-stigma.html


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MHAM Blogging Challenge Day 12: Who Let the Girls Out

Today’s topic is to write about how the quote “The birds of hope are everywhere, hear them sing.” My first thought: ornithophobia. Birds make high pitched loud noises. Birds are pain and they scary. But then I thought Birds+slang=women. And I can get behind that. So first, we must make a new image. How about a girl group being silly? Girls Generation, they were on a late night show.  I got the picture of the group from https://youtu.be/blnf3b2R3y8. birds of hope There are mostly women in my life. Each one of those women care for me and are there for me. All I have to do is reach out anytime I am feeling lost or doomed. When I reach out one of those ladies will respond with love and remind me how to be hopeful, they make me hear hope. There are also famous women we can look up to that bring us hope, musicians, advocates, Nightingale, writers, Hermine, actresses, writers. It is part of Girl Power. Girl Power and sisterhood are suppose to bring us hope. They are our diverse cheer squad. My mom sang us to sleep every night until my youngest sister was about eight. At about the same time she stopped singing lullabies the organists at church started teaching me worship songs she sang as a kid. We always sang full blast to the radio. Us girls still randomly just start singing songs around the house. Music is a way we express ourselves. When I am feeling down, I look at a sister and burst out a line like “LET’s get down to business” and she will belt out right back “to DEFEAT the HUNS!” And then after that song she, or the group of us, keeps going until I feel better. Lets listen to Girls Generation sing “Tinkerbell” I think this song is hopeful because it’s about a person who wants to stay by your side no matter what hardships that are ahead, someone who wants to give you hope that you can accomplish goals, and it is someone who chooses you knowing that you are in an impossible situation. I chose this video because it points out who is singing.

“The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”

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MHAM Awareness Challenge Day 11: Giving other hope

Today’s topic is how do we give others hope. I see three categories of others, others like me, people who try, and idiots. Each group have unique needs based what see. We need things like encouragement, understanding, emotional support, and help with physical needs.

I do not know anyone like me, someone who is barely tolerable pain every second of everyday or someone who had to learn the d6a00d8341ce97953ef01b8d11f319c970c-800wiifference  between headache and migraine by the way it hurts, not the intensity The closest is my have migraines sisters have maybe three times a year and my mom has silent migraines with her periods. I give them words of comfort, it will be okay. It is okay to talk to me about it.. Pain sucks. It will stop. What I have is rare, 3% of headache world. Do you need anything? And my youngest sister has nightmares of the world suddenly having no food during migraines, so I feed her.

My family, Uni, friends, and some other people we know really do try. One thing I found is information about my condition and descriptions about what it’s like can help them. One one thing they want to do is help and they say it with I hope you can get better or pray for you to get well. If they can understand that what I need is encouragement and help walking it brightens them up. Like my sewing group was going to take a break during the summer, but when they realized that it is one of the only things I can usually manage, they were excited because they could help and had been helping just by being there. I changed their expectations and by doing that it made it easier to hope. Don’t hope for me to get better, hope that I get through today.

Those idiots, imbeciles who say crap like “You don’t look sick” Your too young” “Are you really seeing a doctor” “You can’t be in that much pain” “drug seeker” “God is punishing you” “Have you tried some over the counter drug” “Your taking to much medicine”  Those morons. I think I have a responsibility to them to help them. We start with the simplistic information that it is a genetic, neurological disorder, a disability. That they are buying into a stigma, a prejudice, against people who are unwell because it is making them face the fact that wellness is a temporary physically state that is precious and not taken for granted. That one day their body will fail them and become useless, just like mine. Sick people are people too. If God wants me this way, then okay, but the bible says not to judge people. No, miracles don’t work that way. Read your bible, please. I give them the hope of proving me wrong. But I win because they are wrong. And that makes me smile.

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