I had a cerebral hemorrhage near my brainstem. While I wasn't completely cut off from my body, it really messed up the interface for a while. The good news is that function can come back. Contrary to popular belief, the human brain does grow new nerve cells and can repair the damage done. The bad news is, it is going to take a long time. It's going to take years, not months, to get back to functional, much less normal.
Frustration and Humiliation
First off, everything is working normally inside. She is still who she is. She is still thinking, working, trying to communicate, listen, getting bored, wanting to do things. She is fully aware of what is going on around her. She can hear and see you just fine. You speak, she can hear and understand what you are saying. She is not an invalid! Don't treat her like one!
One of the most frustrating things I had to deal with outside the disturbance in motor functions was the difficulty I had in communicating. My thinking worked just fine, I could think up my answer to any question instantly. The problem was getting my body to actually produce the sound and form the words. I had to think of the answer, consider how each word would sound, think out how my mouth needed to move, and then send the speech command to my body. As a result, I was always five minutes behind the flow of the conversation. It's like having an ultra-powerful supercomputer, and you go from having a high-speed, fiber-optic, giga-net broadband connection down to something less than a 300-baud acoustic modem. I reached a point where I just stopped trying to talk. My family just didn't understand or comprehend what was going on inside me. When you ask her a question, give her time to respond. YOU must learn to be patient. She has no choice in the matter at this point.
She's suffered a complete loss of bodily function. It isn't that she can't move, it's that she now can no longer do anything for herself. She can't feed herself. She can't clean herself. She can't amuse herself when bored. She can't control her bodily waste functions. She cannot clean herself after she expels something from her body. Someone else has to do it for her.
This is humiliating! The humiliation is the worst feeling of all. It gnaws at you. It erodes your desire to try. It corrodes your soul. It removes your will to live. You lay there in your hospital bed in a muddy puddle of your bodily waste, wishing you could reach the control for the pain meds and have it dump everything all at once into your IV line and just end the humiliation forever.
People talk to you like you are a child, an idiot. And always in a loud voice. They talk at you. They talk about you. But never to you. They talk about you in the third person as though you aren't there, in the room, laying in the bed right in front of them.
Do what you can to maintain her dignity as a person. Don't treat her like she's a doll laying in the bed. Remember there is a person in there. Treat her like one. And I'll warn you, that will take a LOT of patience on your part.
When my hemorrhage hit, it felt like someone buried a pickaxe into the back of my head. It hurt. I knew something was horribly wrong, but I couldn't figure out what it was. It never occurred to me I had a burst aneurism in my head. I did't just drop to the ground paralyzed. I managed to get up the stairs and say I needed help before things started going bad in a hurry. An ambulance ride later, I was in the hospital. Initially, I stabilized and they sent me home. But a few hours later, I realized I was getting worse and got taken back to the hospital. Over the next few days, issues would come and go, and when they would go, they took things with them. I ended up in a hospital in Boston for the next several weeks.
Brain injuries are awful things on more levels than people consider. It is absolutely the worst injury you can endure. It is at the very core of your interface with the Universe. It can and does effect everything you are and do. You look normal on the outside. No one can see that you are damaged in any way. But you are not normal on the inside. You can have an arm or a leg blown off and the world can see you've been injured. No one will ever know what part of your brain was just blown out and they will never know that you are hurting as badly as you are.
I focused on the fact that I could still feel my feet. I could make my toes move and I could feel them move. Feed back is vital! It let's the brain know that whatever you tried to do did in fact happen. It also tells the brain when you try to do something and something else happens. As long as there is feedback in the system, no matter how small, the brain can work with that and start repairing the network. The more network that needs to be repaired, the longer it will take to recover. But the more network that gets repaired, the faster that recovery will happen.
Find what still works and go with it! Things that come back early will come back quickest and most complete over time. The later things come back, the longer it will take to return completely, if at all.
The sheer amount of energy it takes to do things is enormous. As you already noticed, just the act of blinking is exhausting. For every fifteen minutes moving around, I usually had to spend an hour or two in bed recovering. It took a few weeks before I was able to stay upright and functional for any meaningful amount of time. Because I looked normal on the outside, people (and family) couldn't understand why the littlest things would exhaust me so much. Every movement had to be thought out and planned. I even had to think about how and in what direction I had to lean in order to start myself walking. God forbid I forget to tell my leg to swing out at the same time, there was no way I could make my arms move fast enough to catch me if I fell. Fortunately, once you get a rhythm going, reflexes take over the task. Until you have to change direction, then you have a new challenge to work out before you walk into a wall.
As I implied above, it's weird what works and doesn't work. I reached a point where I could walk normally on level ground. I could even climb stairs. But I could not walk up an incline to save my life! The first time I ventured outdoors and into the backyard was about two months into my convalescence. There was a very slight dip in the backyard, just a couple of inches. So subtle, that you are only aware of it if you got down on your hands and knees and looked across the yard to see the roll of the landscape. But it was enough. I got into the middle of the dip and couldn't get out! I couldn't make my legs move at all. It took two relatives to come to my rescue and carry me back to the house. To get up a ramp, I had to physically lift a leg with my hands, swing it forward and plant the foot before it swung back. Then pull my body forward using a hand rail and then do the same with the other leg. I avoided ramps for about a year until I could get my legs to work on them again.
Expect weird things like this to happen as she starts recovering.
Behavioral Changes and Depression
Her brain has been damaged. Just like a broken computer, there is only so much her brain can do.
Emotional control may take a hit. Her reactions to things may tend to be exaggerated to some degree. Her impulse control may also be out of whack. You know those comedy routines where one character has something extreme happen to him and he starts acting like a different person? He goes around telling people how much he appreciates them, maybe being too touchy-feely and hugging everyone all the sudden? That really does happen. It’s embarrassing. I would look back and think, “Why the hell did I go hugging everybody?!” or “Why did I say that?” She WILL be aware of her behavior, usually after the fact. Let her know this can happen so she can exercise a little extra self-discipline to avoid these situations.
The invisible enemy of brain injury victims is depression.
Depression is not someone sitting around, feeling sad and blue, saying, “Woe is me.” Depression is when the brain is overwhelmed and cannot deal with the input. Just like when you have a really bad case of the flu and cannot function at your peak capability, the brain of someone suffering from depression cannot process information at its peak capability. As a result, the patient crashes and just cannot move forward. The stress of trying to push through this brings on the negative emotions. It becomes a negative feedback, and the patient develops satellite psychological problems along with the depression.
An injured brain cannot process input fast enough. Not only must it continue its day-to-day functions, it is also dealing with trying to reroute connections around the damaged area and try and fix what is damaged.
Think of a computer that you’ve damaged the GPU and just loaded the latest and greatest operating system. A new OS is usually written for the latest and hottest computer to run. Buy your damaged computer is really stressed out trying to run the operating system. Then you start up multiple programs such as a spreadsheet, a music program, and rendering of a digital movie you’ve created. You begin to notice that the computer really bogs down. Windows take seconds to open. You move the mouse around and it is way behind what you are doing. The rendering program performs a disk write, and the whole computer locks up while it completes the write.
That’s what damage does to the human brain and what it has to do to deal with it. Because the brain becomes so stressed out trying to deal with all this, the patient becomes overwhelmed and begins to crash. Depression.
Even the most strong-willed and mentally disciplined person will succumb to this damage. It is par for the course with brain injury. Add to that, the event that led to the injury is emotionally traumatic, frightening. This adds a layer. It takes a toll.
She will suffer from depression. It is best to line up a counselor to talk with her as soon as possible. If you catch it soon and in the early stages, depression is merely a bump in the road. As her brain recovers, it will go away. But let it go for too long, it will fester and make things worse. It will leave chemical and neurological scars that will be difficult to heal.
Reduce stimulus. Don’t hit her with too many things that require her to use her brain. That damaged computer running too many intense programs can overheat the CPU and fail. An injured brain might sacrifice the repairs or wire something wrong because it needed to put those resources to processing. Quit the extra programs and reduce the load on her. Let her concentrate on what she needs to focus: healing and making her hands and legs work again.
Don’t keep her in the dark. DO NOT LIE TO HER. Take tasks off her and have other people do it for her. Report to her that Item-X or Task-Y have been taken care of and what the result was. This way, she doesn’t have to think about it and knows that everything she can’t do yet/anymore are being handled.
The Road to Recovery
It’s long, bumpy, with lots of twists and turns and you’ll need to pull over a lot.
Help her communicate as soon as possible. That is a huge goal. It gives her some independence for herself.
Physical therapy is vital! As her various faculties and body functions return to her control, she has to work at those to bring them back to pull use. That is her new career. The therapies designed today make a difference. It is mind-rendingly boring doing many of these tasks; get her an iPod so she can listen to music. (The iOS interface is very, very simple and intuitive. It does not task the brain or need complex physical motion to use it.) Audio books read by a competent voice actor are far better than I thought.
Reduce her emotional load. Focus on comedies and light-hearted entertainment. Avoid heavily emotional, horror, and tragic movies for a couple of years. Laughter really is the best medicine. The more you laugh, the better you feel, and the better you feel, the faster you heal. This truly does make a difference, and it may dispel some of the issues that can arise.
Watch out for signs of anxiety attacks. This goes hand-in-hand with depression. The faster you address the issue, the easier it is to stop it.
Don’t forget her husband. Not only does he have an infant son to take care of, he has a terribly disabled wife to take care of. He is going to try to handle it all himself, but he cannot. He will fail miserably and it will absolutely kill him. He can/will suffer from depression and anxiety just as much as she will.
He doesn’t just need a boy’s night out. Show up with some burgers and beer and grill dinner for him right there. When they are out at a doctor’s appointment, slip in and mow the lawn for him. Do the laundry. It doesn’t have to be round-the-clock. You’d be amazed how much it lifts the spirits to have something on the checklist removed. He is going to need time for himself. (Keep in mind, mowing the lawn just might be that task he uses to calm himself. Check with him when you do something.)
It took me several years to recover. It was four years after my stroke before I had a day where I actually felt reasonably normal. It would be another two years after that before I was able to take on a regular job. Subtle physical symptoms continued for a few more years after that; odd twitches, occasional flashbacks. But that faded over time.
During that period, I missed friends getting married. Missed out on a lot of life going on around me. Advancing professionally. I had to start from scratch and claw my way back to normality.
Once her mobility has been worked out, make sure you include her in life activities.
During the early stages of recovery, carefully filter visitors. There are some people who are draining. They are the enemy to someone with a brain injury. They rapidly overwhelm the patient and wear them down. You know these people. They are the people that you consider a friend, but you can only take for a certain amount of time. The person who seems to corral you and keep chatting away without pausing and seeing if you are engaged in the conversation or not. These people need to be limited in their access to her.
There are people who bring energy with them. They are calming and considerate, compassionate and empathic to the emotional state of others. These are the people who you want to encourage visits. Allow them to stay longer.
For a while, keep visits with everyone to under 15 minutes at a time and to only a few per day. Watch her carefully and see how she responds to different people. Make sure you discuss with her what you think and see how she feels. If there is a particular person she wants to see, by all means call that person and have them come over as soon as possible.
Tell her the truth. Don’t hide things from her. Even if it is bad news. I do recognize the fact that some people handle things better than others. I prefer dealing with the facts. I still remember the look of horror the neurosurgeon and his nurse exchanged when I asked how many months it would be before I’d be normal again. It was months later when I was finally told it might take years. I had figured it out for myself pretty early, but decided I was going to be back to what I was no matter what. I think the only reason they finally confided in me was because by that point, I had already made what they considered remarkable progress.
I recovered from my condition completely. Unfortunately, I am a rare and very lucky case, considering the amount of damage I had to overcome. However, if she sees an example of what can be attained it will give her a goal to shoot for. It is one thing to say, “I am working to recover completely,” and another to believe it. But seeing that it is really possible may help her work harder at it and that may cause her progress to go a lot farther than otherwise.
I realize that a lot of what I said above is frightening. But this condition can be overcome. It is going to take a lot of determination and some teamwork. She may bounce back faster than you believe, as the swelling of the initial injury goes down and the nerves can work things out. Just be ready to stretch forward a hand to catch her if she stumbles and help steady her back on her feet again.
Sure. A bond trader trying to tell a real businessman how to run his company and tell him what a better product line would be.
Every company I worked for that put an MBA at the helm, failed. Those MBAs didn't understand what it took to create a product. They didn't understand production. One CEO got put in place didn't even know what products the company made (that company only lasted six months after he took over). And here we have a financial moron trying to tell an engineer how to run his company and what products to make. That's laughable. That would be like me trying to tell Einstein that the formula should be E=mc^3.
Hugh Howey's Silo Series, starting with Wool. Granted, it is a dystopian story, but it shows a strongly human side to the collapse of civilization. A lot of dystopian stories tend to focus on the inhumanity and shock value of distorted societies. Howey's collection of novellas makes it much more personal to the reader. I believe it is the uniquely intimate approach to such a story that caused Howey's stories to catch on.
You print something the owner of your publication or one of their major advertisers doesn't like, you get fired. Pure and simple. Just look at Fox (e.g. "Faux") News to see that. They outright distort the facts and lie to push their employer's agenda. Murkdock pays them well to look like fools and idiots--but there are greater fools and idiots who fall for that crap.
On the other hand, publications have soared to extraordinary heights in public opinion when reporters break earthshaking, investigative reports, even at the cost of the owner's friends and contacts in high places. Credibility brings in readers and more readers brings more money from advertisers. When publishers see the new bottom line attached to credibility, they usually loosen the reins and let the reporters do real work instead of writing fiction. For this, the problem is often self-correcting. The problem with gaining credibility is it can take years to have an effect, yet one misstep can blow it all away. Often, a major publication doesn't regain public trust until it is sold to a new publisher with an untainted reputation. The opposite can happen, too, when a reputable publication is bought out by a publisher of questionable reputation. Once the publisher starts pushing their questionable agenda into print, the publication's reputation slides rapidly and the target readership drops off. It is very difficult for even a top publication to recover from that situation.
The first place you will find out about the reputation of a given publication? From those on the front line: the reporters themselves. Contrary to public opinion, the majority of journalists take great pride in their work ethic and feel strongly that they are performing a vital public service factually reporting the news. So they take great offense to publications that don't do fact checking—called "Rags" in the industry. Reputable reporters almost all have a list of publications with which they would not want their names associated. Early in my career as a stringer (freelance writer), I commented to a colleague that I had applied to The XXXXX Post for a staff position. Nearly all the journalists around us stopped what they were doing, looked at me, and in one voice said, "Oh, God no! Not there!" Instead of covering the event (a boring political meeting going nowhere), the next forty minutes were spent with them giving me a lot of career guidance and networking. So, you want to know where you should be getting your news? Ask the reporters.
The legacy of the Bush administration is the most corrupt Congress the United States has ever had.
The problem is, Bush's campaign to destroy the education system in America worked, and now most Americans are too stupid to figure out who to vote out of office—or even to realize that they don't need term limits, they just need to vote the jerks out of office. (And not vote new one's in)
Living for just the art? Please!
I'm not sure what medications some of the above posters are on, or perhaps their glasses are a tad too rose-colored to understand reality, but I've got some news for those people: I'm an author and I make a living selling the stories I write. I love telling stories. I love writing. But if I wasn't making an income selling books to people who enjoy reading, I would not be able to afford to write. The only way I was able to truly get a start in writing is in thanks to my very understanding and supporting family when I decided to go all in, stop working regular employment, and start devoting myself 100% to writing. It took over three years with no income to write that first book. Do you think I could continue writing the books that many of you have read if I wasn't earning income from the sales of those books? My colleagues and friends, John Scalzi, Spider Robinson, David Brin, Walter Hunt, and Kristine Rusch--do you think any of them magically get their income from somewhere else?
If you showed up at work one day and your boss announced that they were no longer going to pay you for working at the company, that you would be doing your job for the love of doing your job, would you stay with that company? No, you'd go right to your desk, clear out your personal items and walk right out the door! Otherwise, how would you pay your rent and buy food, software, clothing, transportation, etc.? You can only leach off friends and family for so long before they are going to throw you out and tell you to get a job.
Get a benefactor such as Count von Moneybags to support you for life as an artist? That practice disappeared sometime back in the 18th century. You'd better go relearn your damn history. Back in the 1600's an artist had to produce for their benefactor or they would get cut. Even Leonardo Da Vinci, one of the greatest geniuses in history, was dropped by his benefactors at one point or another. Mozart had to beg for commissions. By the 18th century, benefactors had pretty much disappeared. We live in the 21st century. People with enough wealth today to be a potential benefactor are more interested in increasing their wealth than they are in supporting the arts. A writer, on average, produces one book every two years. Do you really know anyone who is willing to sign over a $50,000 check each year to support someone who walks around, relaxes and daydreams all day? I'd get fired from any job doing that.
Anyone can be an artist, as a hobby. But if you want to devote yourself to that art as a living, how are you going to put food on the table? Paint a picture of food and it magically appears. No. You have to create something that is good enough that people are willing to exchange money in exchange to own a copy of that work for their own enjoyment. I like to write programs, some of which I have shared with others for use or education. But does that make me a professional programmer? No, I'm just a hobbyist. I make my income by writing entertaining stories that people want to buy because they enjoy reading them. When you hear someone say "they live only for their art," behind that person is either a very hard working spouse or partner or they've somehow managed to land a sizable grant that supplies them with enough money to pay for housing, food, art supplies, electricity, heat, water, and other necessary things.
Those people I've known over the years who said they lived for their art, not money, are no longer artists. None of them made it much farther than their late 20's before they gave up on their art and became professional laborers. As a professional artist who makes his living selling his art, I am not foolish enough to forget that there is a very serious business side to what I do. And if I do not manage that properly, I can really screw myself over.
Back on the main topic: DRM? I hate it! It has nothing to do with protecting my copyrighted material. I have never seen DRM to anything to save me from having a copy of my work stolen from me. A copyright is meant to protect me from having my work stolen by another organization and sold without authorization or paying me. DRM has only one purpose today and that is to lock someone into a platform such as the Kindle, iOS device, or Nook.
To understand what a copyright is supposed to work, think of it this way. You buy a book, you own that book. But you don't own the text contained within the book, you merely own the container. So, buying a book doesn't give you the right to call a movie studio and sell the movie rights to the story contained within the book. My take is you have the right to do with that container whatever you want. Read it and keep it on a shelf to read again at a future date or sell it to someone else when it has become worn out. The container can be a bunch of cellulose sheets stacked and glued together, or it could be a computer file that allows you to read that story on whatever device you want.
The idea behind DRM comes into play in this scenario. Subject-A buys an ebook, reads it and enjoys it. With paper books, perhaps your moving to a new home and you want to lighten your load, so you put a box of your reads on a table with a sign saying, "Used Books, $1 each." With an ebook, things get a little tricky. If you sell the ebook to someone else and then delete the copy you have on your computer. No problem! But if you sell it to someone else and keep your copy of it, you just violated my copyright by publishing my story without my permission or financial renumeration to me as the person who created the text contained within the ebook file. A legitimate publisher pays me for the right—usually exclusive—to print and sell the text that I created. When a company does that without my permission, they are effectively stealing income from me. DRM is supposed to keep that from happening, Subject-A selling an ebook to Subject-B, and -C, -D, -E, etc. That is the ideal of what DRM is supposed to be used for. If Subject-A wanted to sell the ebook to Subject-B, then the DRM should be transferred to Subject-B so Subject-A can no longer access the original file. Only, it isn't being used in that way.
DRM is being used to force and lock consumers into a single, unique platform—not protect the content creators or owners as claimed. Amazon does this by using both DRM and a proprietary file format that cannot be used on another reading device without a license. Barnes & Noble uses the EPUB format which technically should be usable on any platform that supports it. Only, DRM keeps this from happening. Apple recommends not using DRM to publishers of music and books, but offers the choice to the publisher to apply it if they wish. Barnes & Noble followed Apple's lead and gave the same option. Amazon grudgingly did the same afterward.
I do not like DRM and I will not apply it to my books. My attitude is you—the reader and my customer—paid for this file in order to read the story I wrote. What device you want to read it on is totally your choice. DRM gets in the way of your freedom of reading the story you paid for in whatever manner you like. Computer, e-reader, cell phone, tablet, TV, whatever. Did the device you use to read get broken or wear out? Perhaps you grew tired of Platform-X and wanted to use Platform-Y. You should be able to simply drag and drop the EPUB file of my book onto your new device and get right to reading it.
Another problem with DRM is lack of Quality Assurance. I can't tell you how often I've purchased an ebook only to discover that the publisher put no effort into ensuring that the type-setting of the book would render properly on an ebook reader. All it took was ripping open the EPUB file, making TWO changes to the CSS in most cases, and the ebook rendered perfectly thereafter. But to do this, one must first be able to remove the DRM so the file can be opened. But if you can't remove the DRM, you're pretty much screwed and reading a favorite story becomes a chore because the text just doesn't flow right. One of the worst offenders of this practice is Ballantine Books--reading Dragonriders of Pern practically made my eyes bleed. The only publisher from whom the ebooks I've purchased have all been perfectly typeset and render like real books are those from Baen Books. Baen gets it and puts the effort into making sure the ebook renders properly.
How many people do you have to "keep honest" with just enough DRM? Not that many actually. The vast majority of people out there are more than willing to pay a reasonable price for music or an ebook. The number is easily around 90%--95%. Even people who got a file through illegal means and found they enjoyed the media will go to a legal outlet and legally purchase the media. The whole "try before you buy" model. This rate runs about 40%--45%, so it is usually best to simply charge up front for goods rather than offer it for free and hope they pay for it later.
Last, and certainly one of the most important points, is the price put on any given media should be fair. In books, the average retail value for a hardcover fiction book is about $17 and the paperback of the same title is around $8. Hardcopy books have costs built into them: manufacturing and materials, warehousing and distribution, and cost of returns (books that don't sell, retailers can return for full credit from the publisher). Ebooks have NONE of those overhead costs! So why the hell are publishers charging up to $13 for an ebook? The setup costs for a book are pretty much the same whether it is published as a hardcover, softcover, or ebook. But ebooks have no further overhead costs once they are "put on the shelf" for sale. After that, they are pure profit. They never have to go out of print, because just a single file can be downloaded from the server for years. A hardcopy book has to have more copies printed at a cost in order to keep copies on the shelf, and eventually sales of any book drop off enough over time that it is no longer profitable to print the book. That's why books go out of print. In my opinion, ebooks should not be priced more than 70% the cost of the paperback version.
The reason people pirate games, books and music is because the pricing is often not reasonable. To get one song, you have to spend $20 on an entire CD filled with crap for just that one song? A company expects you to fork over $70 for a game that turns out to be completely unusable unless you are connected to a central server, which means you can't play the game during the times when you usually play a game; when you can't connect? This is why people pirate things. They feel they are not getting the value for the price being asked. Another reason for pirating? The item might not be available at a given person's locality. If a given piece of music is being pirated like crazy in another country? Maybe the publisher should offer it for sale in that country! (Yes, there are often legal and political obstacles to this)
DRM is unnecessary. The price has to be cheap enough that people feel it is fair and expensive enough that they won't view it as disposable to give it away for free. Also, allow people to sample a portion of the goods for free so they can decide if it is a worthy purchase or not. This will really kill off pirating for profit, because people can better perceive if they will get a good value for their money. Apple increased the length of a preview for a given piece of music by 300%, recognizing that 30 seconds wasn't enough to judge some pieces of music. You should at least be able to read the first three chapters of a given ebook for free. If you as an author don't have the reader's interest by the third chapter, your book is a failure. One musician put her music online and told people to pay what they thought it was worth. While Apple set a flat rate of 99 per song, her average came to roughly $1.45 per song. This was a good indication of what people were willing to pay for a good song. Don't gouge the customer! Make the price fair and they will happily pay it.