If you missed it, I appeared on a recent episode of Animal Planet’s Monsters Inside Me.  I’ve had a bunch of questions from friends about the episode and my experience, so I’m posting some answers here.  (Plus, it’s a great venue for my philosophizing about my illness.)  I’ll continue to update this page if more questions roll in.

 

The Monsters Inside Me Episode

How can I watch it?

I am in Season 4, Episode 2: “There’s a Worm in My Eye.”  If you have Animal Planet, check here for the schedule.  We’ve discovered that this schedule changes a lot.  If you prefer to watch online, you can stream or download the episode from Amazon (affiliate link).

 

When did you film it?/What was filming like?

April 2013.  They flew me up to Lubbock and we spent a full day doing interviews – 4 hours of my mom, 3 hours with me, and 1 hour or so with Dr. Hannel.  They closed all the windows in my parents’ living room to give it that “mysterious” feel.  My dad and I did some acting, but it didn’t make the final show.  It was a neat experience (Animal Planet!), but it was kind of depressing recalling just how bad my illness was.

How accurate was it?/What did they leave out?

The episode was based on a true story. 🙂  The basics of the stories are the same; Animal Planet chose different emphases and rearranged the timeline a bit.

Major differences:

  • After one year, I got put on daily migraine prophylaxis and started to recover.  My headaches changed from daily aches to periodic headaches that would send me to the ER every few months.  I started to learn how to manage the exhaustion and other symptoms, and we stopped looking desperately for a diagnosis.
  • Four years after being infected, I came down with similar symptoms while doing summer school at Baylor.  I was hospitalized for 3 days with a migraine in Waco (hospitalization for migraines is very rare).  Once I returned to Lubbock, we followed up with Dr. Hannel, who recognized my symptoms from his own struggle with West Nile and had me tested.  It was the first test in four years to turn up positive.
  • Contrary to the portrayal in the episode, my parents and I were elated when we got the diagnosis of West Nile (philosophizing on that is in the “My Experience” section!).  The quotes Monsters Inside Me used in the episode for the diagnosis were things we actually said in regards to the possible diagnosis of a brain tumor that came up several times in my first years of illness.

Minor differences:

  • I’ve never put rhinestones on my nails.
  • I am actually a decent ballerina, and my favorite form of dance is tap.
  • My dad is not that old.
  • I got infected the summer before 10th grade, which was the start of high school in Lubbock.
  • I did make it to my first day of high school with much pleading.  The scene of driving up to the school and turning around happened many times over the months afterwards.
  • The scene where I am unable to get out of bed was way over-dramatized.  My legs were never paralyzed and I was never panicked; I was simply so groggy and weak that getting up was a huge chore.

 

My Experience

How did you respond when you finally got diagnosed?

I was elated.  I remember skipping to the coffee house as I met my friends that afternoon, nearly shouting my diagnosis.  I had a name for the monster that hounded me.

In her book One Thousand Gifts, Ann Voskamp reflects, “Naming is Edenic.”  Her farmer husband has finally determined the cause of their many litters of stillborn pigs, and it’s a doozy.  She asks if he’s alright, and he responds, “Yes… and no. I don’t like what it is, or that is looks like it’s nearly impossible to eradicate, but you know what? … I’m strangely happy… Just naming it… When you don’t have the name for something, you’re haunted by shadows… But when you can name something…” (pg 52).  The simple act of naming something gives a measure of peace.  Man’s very first task in the garden of Eden was to name things.  In some sense, naming a disease now recalls the task we were given before the Fall.

My colleagues’ and my research in diagnostics offers up names for the mysterious.  Some of the diseases we work on have treatments – knowing the name opens the door to healing.  Other diseases, like West Nile, have no treatment.  But rather than being a fruitless exercise, identifying the disease is good:

  • A diagnosis stops the endless search for, “What is it?” That search consumes time, money, and mental and emotional resources.
  • It prevents the patient from being treated for things she doesn’t have.  I didn’t need anti-depressants; I needed to get well.
  • It halts the fear of the unknown monster.  It is a much simpler thing to face one particular dragon on a brightly lit field than to face untold hoards of dragons and other monsters in a pitch-black cave.

 

Did West Nile affect your faith?

Yes and no.  I’ve had a close relationship with God since I was a little girl.  At the time of my infection, I recognized that undergoing such a severe illness with no outside support can rock a person’s faith.  Since West Nile isn’t a visible illness or a “casserole illness” and I worked hard to keep up at school, not everyone realized just how sick I was.  Some of my closest friends stopped speaking to me.  Doctors either didn’t believe my story or wouldn’t find anything wrong with me.  My high school vice principal tried to kick me out for missing too many classes on the day we were due to find out if I had a brain tumor.  And, my parents’ and my prayers for healing seemed to go unanswered.  It seems logical to me that I would have questioned my faith in Christ, but I didn’t.  My faith never wavered.

My favorite verse has long been Joshua 1:5: “I will never leave you nor forsake you.”  God tells Joshua this as Israel is heading in to the Promised Land.  The author of Hebrews claims this verse for all Christians (Hebrews 13:5).  I knew that in the midst of my illness, God was walking right beside me.  I knew He would heal me – either here on earth or fully in heaven.  I took comfort in the fact that He understood what I was going through, when doctors and friends wouldn’t and my parents couldn’t.  I think now that God used that time of intense illness (and others) as a training ground.  If I can learn to follow Him in the midst of deep darkness, I can follow Him no matter how hard the trail gets.

I am grateful to God for the progress I’ve made in these 10 years: most of my new friends know I have West Nile from news articles posted on Facebook rather than watching me crumpled in pain on a school bus or constantly absent from school.  I am so grateful that my infection with West Nile was not more serious than it was. Many survivors face painful nerve damage, paralysis, and memory loss. Many never got to call themselves “survivors.”   I am grateful for the way the virus has changed me: an appreciation of rest and Sabbath, perseverance and time management, a reliance on the people around me, an understanding of the medical system from the patient’s point of view, and a platform to speak of God’s faithfulness.   Even through this illness, God has blessed me far more than I deserve.

How do you feel about the medical profession?

My experience in going to 13 doctors taught me a lot.  It broke the perception that doctors know all or that they all care about finding an answer.  Many wrote me off as a depressed teenage girl lying to her parents.  Many tested me for a particular disease and, when the test came back negative, shrugged their shoulders and sent me away.  Some tried to treat me with medicines (anti-depressants, birth control pills) that didn’t address the underlying cause and made me feel worse.

My experience with 2 wonderful doctors (the one to treat my migraines and the one to diagnose me) proved that there are good doctors!  Having doctors that believed me (“I’m really not taking drugs”) and pursued the problem to its end made all the difference.

Now, I’m pretty skeptical of any new doctors I go to; they must earn my trust.

 

How did your West Nile experience influence your career choice?

I’ve always been interested in health, and thought before and after my infection that I would become a veterinarian.  If there were ever an interest in human medicine, West Nile squashed it.  I saw too many terrible doctors and saw the ugliness behind the medical profession (how terrible is dealing with insurance??).  I also know that my body could not handle the rigors of medical training (24 hour shifts?  You’d better admit me afterwards.).

Biomedical engineering seemed a logical choice for me after I decided veterinary school was not for me.  That I’m now working in diagnostics is serendipitous, but it makes a lot of sense.  I think God ties together the strings of our stories in ways we couldn’t have predicted at the beginning.

 

What vitamins did your doctor recommend? / What medicine(s) help?

He didn’t recommend any specific vitamins.  Now, I’m only taking a multivitamin.  Previously, I’ve taken a B complex to help with energy.  I’ve been on 20 mg amitriptyline daily for about 9 years for migraine prophylaxis.  I think this has been a huge help!

 

How are you now?

Pretty well, thanks for asking!  I still tire easily, and I’m still on amitriptyline to help with the migraines.  I have a harder time getting over minor illnesses than other people seem to.  But, I’m so much better.  I haven’t been to the ER for a migraine in years.  With every new health problem, we wonder if it was influenced by West Nile (for example, I heal after cuts or scrapes really slowly), but we may never know.  I’ve been able to do just about everything I want to (marriage, church involvement, graduate school, some travelling) with a little preparation (pack a large medicine bag) and a big nap.

 

West Nile Virus

How fast is the onset?

2 to 14 days after being bitten by an infected mosquito.

 

Can you pass it on?

During the initial infection, yes.  The viral levels in a human aren’t high enough that a mosquito could bite an infected person and pass it on to another person, but the viral levels are high enough for the disease to be transmitted by a blood transfusion.  The US blood supply is now screened for West Nile.  There has been one case of a mother passing West Nile to her baby via breast milk, but the risk is not well understood.

After the initial infection, as far as we know, no.  If the virus was completely cleared from the body, then no.  Researchers are still looking into those of us with long-term effects to see if the virus is still present actively causing damage or if we are continuing to deal with damage done during the initial infection.  If present, however, the viral levels are very low and should present no transmission risk.

 

Who gets West Nile?


A lot of people get infected, but clear the virus and may never show symptoms.  The people who tend to get very sick are usually elderly.  I’m the aberration at our patient meetings because I got so sick so young.

 

Are there any long term effects/What are they?

When West Nile first hit the US, most doctors thought it was like a cold virus or a stomach virus: you’re infected, you’re sick for a few days, and then your body clears the virus and you’re good to go.  The experiences of West Nile survivors months and years after infection finally caught the attention of a few researchers who are cataloging and studying the long-term effects of the disease.

Some common effects are fatigue, muscle weakness, tremors, mental difficulties, depression, and paralysis.  Recent research has shown that the virus likes to live on inside kidney cells, and a significant number of survivors are showing symptoms of chronic kidney disease.

If you’re really interested, look up the papers of Dr. Kristy Murray, PI on a study of one of the largest West Nile cohorts in the world.

 

Who gets long term effects?

Only a small percentage of the people who are infected get any symptoms at all.  Many of those have lingering effects.  Research is ongoing into whether there’s any genetic predisposition to long-term effects.

 

What can I do to prevent it?

Short answer?  Don’t get bitten by mosquitoes.  Use bug spray, wear long sleeves, and drain any standing water.

Long answer?  Nothing.  The measures above, at best, reduce your probability of coming down with West Nile.  Focusing on those measures gives you the illusion of control and puts the blame on West Nile’s victims.  (“Obviously, they got West Nile because they weren’t wearing bug spray, like I do.”)  We do this with a lot of bad things in this world – “Drive defensively to avoid getting in a wreck,” “Get mammograms every year to stop breast cancer,” “Walk in well-lit areas and don’t talk to strangers,” “Teach your kids right from wrong.”

There are steps we can take to reduce the likelihood of many terrible events, but we. are. not. in. control.  Bug spray is not a god that can save you from illness; treating it as such is idolatry.  We’ve got to acknowledge who’s really in control (God is) and submit to His direction when the bad things happen.

(I read a wonderful article years ago articulating this idea much better than I have, but I cannot find it.  If you have any leads, please let me know.)

 

Will you write about West Nile with cartoons on Pathology Storybook?

Probably not for a while.  I had my adventure in getting diagnosed because so few doctors knew about what West Nile can do.  There isn’t enough detailed research yet for me to write the same kind of story as I did for, say, broken bones.