INSIGHT - Sarah's Illness

When I first started imagining the Necropolis series, Sarah was very nearly an after-thought.  She was a secondary character who would play a crucial role at a secondary turning point later in a later book.
My earliest thinking about Sarah didn’t do a lot to make me interested in her.  I don’t recall the specific sequence of thoughts that massaged the character into one I became interested in.  Surely it had something to do with her being inherently weak – a victim of her illness.  But as many authors will tell you, some characters have wills of their own; and Sarah is an excellent example.
She is smart and she refuses to lay down at the foot of her disease, and this strength of character carries over into her actions.  Yes, she is frail but that only makes her more interesting to me.  She must overcome her troubles with cunning and the sheer force of her intent.  And that is precisely what she did to me.  She refused to be pushed to the side as an incidental character and showed me that she is not only integral to the plot, but that she is in fact one of the main characters throughout – and that I am going to enjoy writing her as much as any character in the book... at least that is how it currently seems.
It has been years that this story has been rattling around in my noggin, and in that time a lot of things in our world - the world Necropolis borrows most heavily from - have changed.  This has required some tweaking to the plot as I didn’t intend the tale to be a period piece. (At least not until after it is published.)  I had every intention of it being contemporary.
Originally, it had been my plan that the disease that Sarah had contracted from her mother was AIDS.  It fit my intentions very well.  But time has changed that plan. 
In the time since Sarah’s story was first conceived AIDS has quit being the ticking-time-bomb death-sentence that it once was.  Don’t get me wrong.  AIDS is a serious ailment.  In the early 90s I played a show at a hospice in Montreal that my Mother volunteered at, and there was no hiding how dire the situation of the patients who had progressed the furthest was.  It is an afternoon that I will never forget.  In the intervening years I’ve known a number of HIV positive men.  The most dramatic example I met over fifteen years ago – the late 90s.  He was then under the assumption that he wouldn’t see the 21st century.  I still see him around occasionally now and if anything he looks healthier than he did then.
AIDS no longer carries quite the aspect of the reaper that it once did.  And so, I had to make an adjustment to Sarah.  I needed to either switch off what type of disease she had; or change how it affected her story-arc; or both.  The ideal situation would be to simply find a new disease that had the elements I needed... but that has thus far proven to be a bust.  I’m no doctor, but I like to think I have an above average comprehension level when it comes to science-based subjects and I’m no stranger to doing on-line research – indeed I’ve collected a number of paycheques for that very task – but finding a disease that weakened it’s victim (and ideally compromised the immune system); could be transferable from mother to child in utero; was communicable using blood as a vector, but wasn’t at risk of infecting everyone in sight; and, was both decidedly fatal yet could be survived for as much as decades... that was truly too much to ask.  Which is not to say that such a disease doesn’t exist.  I simply haven’t found it... except for AIDS.
There have been some close contenders.  Both Wiscott-Aldrich Syndrome and Severe Combined Immunodeficiency Disease (SCID) have functional aspects that I could make narrative hay with, but the first is inherited and the second congenital.  (The distinction between inherited and congenital is mighty slim for us non-doctors.  For starters, inherited diseases are congenital, but congenital diseases aren’t inherently inherited.)  In any case, they simply weren’t what I needed.
There was one more option available to me though...
I could simply make something up.  What I don’t like about making something up is that there is more than enough “making stuff up” in this book for my taste.  The big conceits of the story are all the fabrication I really want to bow to.  I look forward to the challenge of justifying the obvious fictive science as best I can against the real science of our world.  Naturally there is going to have to be some creative license in the boundary between the two, but as much as possible I want to invent as little as possible.  Having to create a new disease for Sarah as early as chapter four isn’t in my mind a good start.  Like any lie, the more you make up, the more you have to do mental gymnastics to keep the dissonance between reality and the lie in check.
So... what to do?
I love the character of Sarah too much – and have put so much advance thought into her story to really want to rob her of the plans I have for her.  So changing the effects of her illness on the long-arc isn’t really on the table when I think about it at any length. 
Instead I am taking a two-pronged approach.  I have invented a disease.  I am borrowing from a variety of sources – AIDS being the single biggest.  This way the disease can be exactly what I need it to be... for now.  I am not spending any more time delving into medical literature except to flesh-out the corners of Sarah’s ailment with borrowed details from real-world counterparts as necessary.  However, should someone who knows their stuff – or even someone who doesn’t but who is eager to show off their superior Google-fu – has a suggestion that fits my four primary requirements (1: Weakens it’s victim, preferably with a compromised immune system; 2: Transferable in utero; 3: Uses blood as its sole (or primary) vector; 4: Is lethal though not necessarily for many years.) then please, point me in the right direction, and if the proper fit comes along, then it is rewrite time!
Is it too much to hope that a haematologist starts reading this novel?

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Necropolis by Kennedy Goodkey is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 Canada License.
Based on a work at necropolisnovels.blogspot.com.