Advocacy: Lets Help Amanda Baggs

Long ago when I first started this blog I received comments from several people. It startled me. THe idea people would read this blog. Then I had to put it away and found out people didn’t quit following. So with that in mind I am writing the first advocacy post in two years. A great deal of what I learned about advocacy I learned from Amanda Baggs. She was kind enough to email with me for a short period when I had just survived my exhusband and I found comfort in her words. I was able to keep going because I did not feel alone. I didn’t feel trapped by all the things in my mind or the way I see and think anymore. Amanda is one of the most powerful advocates I have met, not in the sense others see power but in her effect that I can see.

These links are PTSD trigger alerts. Simply put, Amanda has been tortured by the hospital that should have helped her and is being bullied into a dangerous and potentially deadly situation. Here are the links and they do include how you can help. Sharing this post or these links will also help.

http://paulacdurbinwestbyautisticblog.blogspot.com/2013/04/no-anesthesia-for-disabled-woman.html

http://webmuskie.tumblr.com/ This tumblr has an entire series of documentation posts about the event. This is the first hand source of the info.

Please do what you can to help Amanda get her needs met and not be punished for the malpractice of her medical team. I am going to go curse into a corner and figure out how to make the calls around my brain tomorrow.

Update: I redid the links to the blogs, they should both be working now. I am not sure why they weren’t since the links are the exact same. If issues persist please let me know.

 

Empathy

I feel helpless. I just got in from my date, which was fine but he revealed his misogyny over my pocket watch so there will not be another date. I then found out my friend’s son is in the hospital having emergency surgery. All I can think on right now is the fear she must feel, the sorrow, and my own emotions well up. This will likely be a very short post as I am going to try and find a way to offer my support. There is not much I can do, but I will do all I can.

Parts of me whirl with that ever present omnithought that never eases, even when I sleep. I think on how lucky he is to have a mother that doesn’t ignore his pain. I think on how odd it was that I dreamed about something similar. I think, I think, I think. I struggle to not feel. The empathy for her, for him, and for the pain has me on the edge of tears. I do not want to feel this.

I do not want to care, but at the moment this worry has dominated my thoughts and my heart. Over the last two years that I have known this family, I have been brought only joy. When it looked like I may have to flee this state to survive, they would have not just taken me in but hauled me across the country to do it. I don’t have many friends that I feel this close to. I do not want her to pain. I do not want him to suffer.

So I must let the feelings go. No one harmed him, it was an accident and that also feels out of depth. Just an accident in my reality is so rare, I think it has never happened before. Not where I could believe it. What do you do when there is no one to defend against? Who do you you shelter when there is nothing you can shelter them from?

When my family aches, I ache. When they break, my soul shatters. When they cry, I shed tears that few ever merit. When there isnothing but a prayer that can save someone, I sorrow on. I prayed. I prayed to the something. I wish I could feel that thing that religious people feel in this moment, and I hope that my friend and her son do. I understand a part of religion in this moment. It is a shield when there is nothing to grab ahold of.

I know that I will do anything she asks of me if it will truly help her family right now. I know she knows this. So I will take my empathy and I will let it live in me. I will love them and I will worry and mourn with them.

Vanity

My vane side will be challenged Monday. I am not so sure a dash of vanity is a bad thing. Vanity helps me present a good image when I am in a professional situation. Vanity gives me a reason to brush my hair even when I cannot get out of bed. Vanity is not as wicked as it could be if you only have a small dose.

I am going to the Dermatologist to finally give in, having a part of my head shaved and a giant mole/tumor cut out of my head. I put it off for over a year but the Mole thing is growing again. I put it off more out of my fear of pain than having my hair look a mess. I am going to buy some nice headscarves and cover what is missing until it grows out. I also look darned good with bangs, so I will eventually have those too.

Haven’t I had enough pain? The pain alone from this mole is bad, but the needles in my flesh that will come Monday will be worse. I can’t avoid it anymore however. This mole is not cancer. I am pretty sure of that. If I am wrong I’ll regret waiting to say anything for years and procrastination but, it is the result of sun damage.

Some of my worst memories with fashion center around this mole. Going to the salon they always cut into it with the brush and scissors, ignoring my warnings that I had a giant mole that stands up an inch tall on my head. I hide it in my hair but, I have never felt it was hidden. My fear is that my hair will not grow back in that spot, that forever I will hold more scars, more risk for torment. More otherness.

Beth Oblong from the Oblongs Series with her short hair and tumor on her head.

Beth Oblong from the Oblongs Series with her short hair and tumor on her head.

This image encapsulates how I have felt for years. Beth Oblong is a girl from a cartoon that was geared for adults called the Oblongs. They live in a Toxic Waste dump, their otherness is flaunted in the show, the otherness got it canceled. When I first saw it, I identified strongly with the character of Beth, if only because I have a rather large thing sticking up out of my head. It’s always there, often it hurts, and as a child I was not allowed to hide it adding to the many reasons that the other children could ridicule me.

That ends Monday unless a surgeon is needed to get it off my head. I am scared, but happy. It’s one way to lose some weight right? I do not need to include pictures of my actual head mole here, nor will I share the grotesque healing process with you.

This is just one way that vanity can help and hurt. My vanity will help me work out ways to hide my wounds which will let my heart heal but vanity also stopped me from seeing a doctor sooner. Doctors can ridicule too and being made fun of for being different has left me wanting to never show my face again in many ways.

Just remember, if you have any moles or skin spots that seem off, do see a Dermatologist. Even if they want to cut it out, it’s better than being sick. Once my head mole is gone I can brush my hair without having to skip a bit. I am so afraid I keep thinking it is tomorrow but there is just one more day, one day left with hiding it. One day.

Then after I heal, just like the one I used to have on my face, I will be free.

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