Wednesday, January 21, 2015

Flaring and a Book Review!

How does one tell that they are flaring, you may ask?
Well, one of the ways I can tell is the amount of blood that I spit up while I'm brushing my teeth. Another is the amount of pain I usually am in, also, if I sleep for 16 hours a night and then wake up only to fall asleep while I'm sitting up not even four hours after I leave my bed is another good way to determine just how active my disease is being.

Of course there's always the fall back of what sort of stuff is coming out of my nose and lungs and how many sores I have in my mouth and on my skin, but that's only if you want to really get technical.

In other news, I can't have any Rituxan until February because my insurance at first didn't want to cover it, then they said they'd pre-approve it but that it would only be pre-approved for February. At least it's only another couple of weeks. I've never had this issue with state insurance before, only when I was still on my parents insurance did I have to fight to get my medications.

Ah, well. It is what it is. On to the second half of this blog post.

I finished Lock In a few days ago and I loved it! You can really tell that Scalzi did his research when it came to disability. There were a few things that I wonder if he is going to cover if he does any sequels, though.

First, I would have liked to see some people that had Haden's actively wanting to have their Haden's cured. In the disability community chronic illness is a subcommunity that can sometimes feel left out when it comes to the positive messages that circulate within the larger disabled community. Often times people with chronic illness want a cure, they don't view their bodies as being differently abled, but as something that they want corrected. This is an attitude I expected to see within the Haden community as the locked in symptom was due to an illness. I could imagine that many people who got Haden's when they were older would have more of this view as opposed to the younger people who are locked in and have grown up living in the Agora.

I also would have liked to see more interactions between people that were locked in and were using Integrators. That was a situation where it would have been interesting for the author to explore the idea of invisible disability. There was a short bit where this seemed to be brought up, but it wasn't explored with much depth. People with invisible disabilities are often treated poorly because they "don't look disabled" enough so others feel that they don't deserve to use the disabled parking spaces or they are ignored when it comes to discussing things that effect the disabled community.

I really liked how Scalzi brought in the issues in medical funding and what would happen to people if they were suddenly faced with losing their disability status. In my case, I would be dead if I were unable to have state provided insurance to help cover medical costs. Scalzi also brought in the rarity of those suffering from Haden's that were locked in and how much of a glut happened in research into their issues because of the famous people that caught Haden's and became locked in. Having a public face to put on a disease is the easiest way to get funding for a disease; without funding people that end up with rare disease have to struggle and fight to get treatments. 

I really, really enjoyed the novel and I hope that Scalzi writes more in the universe he has created.  He was able to touch on all of these subjects within a story where the main focus was a crime mystery. I wish more authors were able to understand the importance of detail in their world building when it comes to stuff like this.

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