The GUIDE: So you want a disease?

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[Sarah Hoyt and I are coordinating several blogs this week.  Yesterday on her blog as well as here, we helped our friend Stephanie Osborn with a book launch.  Sarah also ran this essay on her blog, which I repeat here for readers who may have missed it over at According to Hoyt.]

My friend Sarah Hoyt talks about "gateway" writers who have characters that seem to dictate their life story to her. This comes as a considerable advantage, because the character becomes more "human" in the telling. It may not be necessary to define all of the characteristics of this character, because they come out in the manner in which the character tells its own story. However, if you're like the rest of us, in order to make the character more real, you need to describe more about the health, habits and life-style of your character. In this case, you may wish to have your character suffering from some disease in order to give them something to do in between action and love scenes. Oh, certainly you may be writing a far off future in which there is no disease thanks to perfect medical care and miraculous nanomachines which can cure anything. On the other hand you may wish your character to have a disease that cannot be easily cured, and thus need to come up with a plausible description of an ailment or affliction. After all, the hero who suffers is more human, and therefore more sympathetic.

So, how do you go about selecting a disease and even more important, how do you find out enough about disease to be able to write realistically about it? For the Internet savvy, the first stop is often Wikipedia. While there are many who complain that Wikipedia is not an accurate source, let alone a primary source, it does have a role as a first stop for finding out information about a disease. Personally, I prefer PubMed Health. PubMed Health (http://www.ncbi.nlm.nih.gov/pubmedhealth/) is a service of the US National Library of Medicine. The National Library of Medicine is both a physical library and an online resource for scientific, clinical, and medical information. PubMed Health is one such searchable database of both common and rare diseases. I refer to it quite frequently in writing my own blog about Neuroscience because it lists common symptoms, rare symptoms and has links to treatments, medicines, and specific websites devoted to that disease. It is a much more concise reference than Wikipedia, although it does not provide as much prose regarding the history of the disease or links to current context such as reference to the disease in books and media.

For fiction writing, what is needed is to understand how the disease makes the character feel. For that purpose PubMed Health is the better resource. The first important consideration is the list of symptoms. If your character has a kidney disorder, you want to know how that feels to your character. Does he or she have pain in a particular place in the body? Are there certain foods or activities which will cause the pain? How does having this disease change the life of your character? From PubMed Health, we learn early symptoms of a kidney disease include loss of appetite, nausea, weight loss, headaches, itching and dry skin. Thus, your character may first show signs of the disease in loss of appetite; in contrast, another character may comment on apparent weight-loss. More advanced disease symptoms include changes in skin color, numbness, muscle twitching, bruising, swelling of the feet and hands. As your story progresses, you may wish for your character to begin to worry. An example would be: upon waking, your character notices swelling of the fingers, and muscle twitches that they can't control. They might develop hiccups (since this is a form of muscle spasm) that not only cause embarrassment, but could be a cause for concern by someone else. Your character might be embarrassed by bad breath, or disturbed by insomnia and morning sickness. Each of these symptoms provides not only a glimpse into what your character experiences or feels, but their reaction to the symptoms is an opportunity for character development.

So now that we've explored how the character feels and what they experience, how did they get that way? At this point, whether you're using Wikipedia, PubMed Health, consulting an expert resource, or using your own reading of the medical literature, you want to look into the known sources, causes, and risks that might produce the disease. In our example of kidney disease, several lifestyle risks are immediately apparent: high blood pressure, diabetes, or exposure to chemicals/medications which can damage the kidney. Trauma or injury is always possible, or your character might have a congenital disorder which leads to the disease. You can have your character know from the start that he has a family history, or provide the opportunity to discover something about his past as he tries to figure out the source ("etiology" in Doctor-speak) of this disease.

Once you establish how your character experiences the symptoms and consequences of his disease, and discovered his history, it's time to explore how he will treat or seek a cure for his condition. Cures for disease may involve surgery, medication, therapy or any combination of these. Likewise, treatments involving the same factors may provide relief of symptoms, while not exactly providing a cure. Moreover, therapy which requires frequent treatments can find your character to a particular place. He would not do to have a character who requires weekly dialysis set off on a four-month space voyage of retribution, without taking into account the medical facilities available on his vessel of choice. On the other hand, your character may receive a single treatment, or if you'd treatments spaced over a month, and then know that they must return to the hospital in six months to continue treatment. This provides a window of opportunity for events to take place while providing the additional suspense of wondering whether the character will be able to return in time to receive lifesaving treatment. You also have the opportunity to make your character aware of the dangers involved in certain activities: a person with kidney disease should be aware of the fact that a hit or fall or injury in the vicinity of the kidneys could cause permanent damage; an individual with any sort of head injury should avoid any further, lest it results in blindness, deafness, memory loss or even death; a person with heart disease would need to avoid exertion, stress, and would likely have dietary and other restrictions.

All of this research that contributes to what Sarah calls "stage business." In the example she gave us a few weeks back, stage business consisted of one character brewing a cup of tea, while engaged in dialogue with another. The stage business provides a means of keeping track of which character is speaking, and at the same time giving the character some mannerisms that can be used later to identify them amongst others. Understanding the disease provides stage business in the form of treatments, symptoms, and the need to seek medical advice. A diabetic will likely need to inject themselves with insulin; a person with a neuromuscular disease may suffer from muscle spasms, tics, or involuntary motions; heart disease results in limits to specific activities. Each of these can be used to greater damage and character development, and specific elements of plot can be built around seeking and receiving treatment for the disease. Keep in mind that the disease affects not only a single character, but loved ones, family, guardians and coworkers. It is important that the description of the disease is accurate, but more so to obtain enough information to be able to write that character's viewpoint and life experience with the disease.

The resources are readily available online, if you only know where to look. This is one reason why I liked provide links whenever I describe the disease condition, and I discover websites which are devoted to that specific disease. Again, while you can start with Wikipedia, use it only as a starting point. Consult PubMed Health, and make liberal use of Google searches. If all else fails, ask an expert; it will be well worth your time, and make for much more believable characters.