FUCK your Purple Ribbon

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Disclaimer: I am angry. And sad. And overwhelmed. And it’s ok if you disagree. I will not engage or defend my feelings. They are mine and I reserve the right to feel them.

November is epilepsy awareness month. The month when the epilepsy community posts daily pictures of fingernails painted purple and images of purple ribbons show up everywhere. They’re so pretty the way they stand out on your coat, fluttering softly in the autumn breeze. They are a beautiful symbol of…absolutely nothing. They trivialize the suffering and anguish and fear that epilepsy families live every day. They are a way to make others feel good in a way that is only a farce to me. If you want to spread awareness spread it in a way that accurately represents those that you purport to support. Spread it in a way that validates an honest representation what they go through instead of a way that is frankly just easier to see.

 

Within the past week just within the online epilepsy community that I connect with 2 children are dead. 2 families are grieving, gasping, begging for their children back. Somehow I don’t think that slapping a purple ribbon on those coffins would be anything more than a slap in the face for those families.

Epilepsy isn’t pretty. You can’t paste a pretty ribbon on and call that awareness. The only thing purple about epilepsy is the shade of my daughters face when she’s deprived of oxygen as air is forced from her diaphragm. And it’s not pretty. It’s scary as hell. Epilepsy is all colors. It’s the green of a plant that could save countless lives. It’s the green of my envy when I see a healthy child my daughters age. It’s the blue that tinges her lips and fingers as the seizure claims her. It’s the red of broken blood vessels in her eyes from seizing so hard. It’s the yellow bruises as they fade from black to purple to yellow from falling during yet another seizure. It’s the orange and blue and pink and white pills that we shovel down her throat everyday in a valiant but wasted effort to keep seizures at bay. Epilepsy is the black that you wear to your child’s funeral. It’s the pink of her rouged cheeks as she lies in her coffin. Epilepsy is the void of every missed moment in your life that seizures or fear from seizures stole. Epilepsy awareness is in the bravery of those who open their lives and share images of those moments. The hard ones. The vulnerable ones. The REAL ones.

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Epilepsy is not just purple. And it’s definitely not pretty like a ribbon we put on it to make others feel more comfortable. Fuck your purple ribbon. I want a cure.

 

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23 thoughts on “FUCK your Purple Ribbon”

  1. This blog was so brave and real to post my daughter started sissy reign in August of this year she 6 now diagnosed with epilepsy and it takes over every second of our lives now luckily by looks of your daughters they haven’t been as severe and meds control about 50 percent now but it’s heart breaking she constantly has bruises from drop seizures and every second of the day I wait for the next one that will send us back to hospital side effects of the meds are awful she has has to wear pull up pants at almost 7 as she wets the bed from the meds and seizures so she was not getting a settled night sleep I hate it every day I wait hoping it will end she will be back to her old self it alters her personality every thing she does that are warriors every day fighting something out if there control such a gorgeous girl with a fantastic mum

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    1. Are you aware of 4 PAWS for Ability? They provide service dogs of all types – many are trained to alert for seizures. At least you get a warning to prepare. I know many parents are so worried at night, afraid to close their eyes that their child may have a seizure and them not be aware. The dogs sleep in with the children and are trained to alert/get you when they sense a seizure developing.

      4 PAWS is a most incredible organization – you might consider becoming familiar with them.

      Wishing you the best…..

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  2. I agree totally with all you’ve written. It breaks my heart to hear my daughter say her automatic words when she comes out of her daily tc “I’m ok, I’m just a bit quiet”to which i always answer “you’re not just quiet, you’re also amazing”. She’s 9

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  3. Thank you.

    My mom has epilepsy. I learned at a very early age how to care for her when she had them. I can remember the fear in my friend’s eyes when they were over and she had one. I always tried to stay calm and be the support for everyone.
    I later developed adult seizure disorder. It was one of the scariest things that has ever happened to me. I don’t have them often, but when I do, it’s still scary. Coming out of it and seeing the fear in my children’s eyes is really hard as well.

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  4. My friends lost their 10 year old to FIRES two years ago. Literally out of nowhere. I’m already aware of epilepsy. What I see when I spot a purple ribbon or awareness post is money. Potentially that person donated money to a charity that funds research. Or to a charity that provides respite, or a family vacation. Or new shoes, whatever. The sight of ribbons makes me think that person cares enough to open their wallet, and that fills me with hope. I could not imagine losing a child, or watching my child suffer, I have empathy for anyone who has done so.

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  5. My daughter lived that horrific life. For 9 years we saw all the colors you wrote about. 16 months ago today we lost our sweet Anna.
    I live daily wondering what I could have, would have and should have done differently.
    Our hearts are shattered and our lives are forever changed without our little angel.
    I think and pray daily for all the children and families living with this nightmare.

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    1. So sorry for your loss, we all live in fear for this !! I can only imagine how painful this must be. It is unthinkable and unnecessary with what is available but blocked by ignorance!! My heart is broken for you and your family. I am the mother of a daughter with the horrific diagnosis of Epilepsy!!! I am sure your daughter is walking among the Amgels!

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  6. This makes it so real for me. I’ve never been around it (epilepsy) but I know of family and friends that deal with it. I cannot say I understand, but I can say I’m sorry you have to go through this day after day after. It would be wearing on anyone I’m sure. I can only offer you encouragement and continue to reach out to others who can relate and offer you some help, advice, encouragement, even hope and perhaps a good hug now and then. God bless. I trust there are answers out there. Stay CLOSE to those who love you and can support you in whatever way they can. GOD’S PEACE AND STEADFAST LOVE. ❤

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  7. In Loving Memory of HOLLY DIANE DIXON. 1983-2004. Died of a MASSIVE EPILEPTIC SEIZURE. Loving mother of Shaun, Loving daughter of Diane and Lou Dixon. Loving sister to Stacey, Domenic, Aaron, Chalena and William. Pray every day for a cure and the discrimination of who has the better insurance. May she REST IN PEACE and know that she was loved.

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  8. Well said! These kids and their families need respect for what they are able to endure. If Cannabis was covered by insurance, if chemicals were not poisons, if the medical community told the truth, if hopes weren’t derailed, if only Epilepsy were cured!!!!

    Liked by 2 people

  9. My name is Katie I am 18 years old and I’ve had to deal with sezuires ever since I was 2 . I was in a car accident and ever since then I have scar tissue on the left side of my brain. And I completely understand… your a very brave mother. And she’s very brave for being so strong. My mom was told I wouldn’t turn out “normal” and become a vegetable the rest of my life.. but I am “normal” and I’m in my senior year of high school . I wish you guys great luck and just stay positive and never give up on finding a cure… I hope they make one some day .. I know she’s strong and so are you. Don’t give up .

    Liked by 1 person

  10. While I understand what this article is meant to convey, I find the comments to be a bit disheartening. I was diagnosed with epilepsy about 30 years ago and still regularly go through fall down seizures. I am also a mother. The bruises, broken bones, and shoulder dislocations (yes, plural) have made my life colourful. For someone to wear a splash of purple fills me with hope. I see solidarity. Epilepsy does not define me, but it has had a huge influence on my journey.

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  11. I hope that your child out grows her epilepsy with time and better medicine. My mother was grandmal epileptic.and was very limited on her response’s or how stressed or shocked she was. Have seen reports that marijuana is being used as a replacement manager instead of the allotted twenty plus pills. The idea is that long term use of marijuana well help the individual natural balance and develop as were they can discontinue use of there stabilizers and out grow by long term therapy, similar to how with adhd nerve patients that the constants lead to the correction both at nerve development and conversion performance of a individual. Also is hoped to help with permanent or long term production of there system leading self adaptation. I hope you well and strongly suggest that this therapy be pursued.

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  12. This post touched home. Maybe instead of a purple ribbon everyday in November we need to do this right here. Share the all too private hell our babies and loved ones go through. Show the Reality of epilepsy. Post a video of a seizure and attach this article. Headline : Fuck a purple ribbon, This is epilepsy!

    Liked by 1 person

  13. I respect your opinion, and wanted to share mine as well. I have a son who was diagnosed with status epileptic us when he was 2. He is now 7. For me, wearing a purple awareness ribbon gives others the chance to speak me, ask me about it, and me the chance to share facts about it. As anyone with any diagnosis, disability, etc knows…awareness and sharing truths and facts is the ONLY way to overcome the social discriminations and misconceptions that are so prevalent. It’s not meant to be “pretty”, it’s meant to spread awareness and facts. To help dispel fears and prejudices. THIS is why I will ALWAYS support. And not just in November, but always. I have seen the ugliest…and I still support awareness. I Want my son to grow up in a world where people are better educated about it and have a better understanding, and less fear. Knowledge is power. To remain silent is not an option for me. There are too many who suffer in silence. I will not stand by when there are things I can do, and have done, to help….for my son.

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  14. This its my life I’m a lot of ways my wife has epilepsy and the majority of people don’t want to know the truth. My wife’s series are we controlled still We have fought with university professors that have tried to get her to leave because they would rather get leave then deal with her.

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  15. please all of you that have children with epilepsy, you need to get canibus oil it works better than any med I have seen so far course its not for everyone but it does work! god bless you all I feel your pain my grandaughter was diagnoised at 5 she is 7 now and is on canibus oil, and is being weined of the last of the in t they put my opinion horrible meds that they put these little children on just horrible the side effects are even worse, she lives in oregon and is doing well she also just got a service dog, and thats what there donations, go towards, is canibus! and helping children that can’t afford the canibus oil. research, research, research , oregon is the best I think but its my opinion! god bless you all don’t give up hope!

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  16. My condolences to all the families that have lost a loved one. I would be remissed not to post what I have learned from CNN and a myriad of Success Stories using Cannabis to stop siezures. Please click on the link to see one example. Please drop me a note if you need any more information.

    Sincerely,
    Claudio…..

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    1. You are as entitled to your feelings as I am to mine. I WILL NOT be ashamed for how I feel.
      If you feel supported and solidarity from purple ribbons, good for you! I think people need to do more. Instead of just feeling supported imagine if you truly were. Imagine if instead of wearing a purple ribbon that person shared seizure first aid with 10 new people so that I could stop worrying about people shoving shit in my daughters mouth every time she seizes in public.
      Imagine if epilepsy got the funding it deserves since despite multiple new AED’s and surgical options introduced to the market in the last several decades the statistic of 1/3 of people not being able to control their seizures has NOT changed.
      Purple ribbons are great. They’re not enough. And I’m not going to pretend it’s rainbows and sunshine and blow smoke up purple ribbon wearing Suzy’s ass and pretend that it is. Wear your purple ribbon if that helps you. But DO something real too.

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