Judging Books by Their Covers

There are some life lessons that you just have to learn for yourself.  “Don’t judge a book by it’s cover” is one of them. 

My mom recently shared a story with me that reminded me of this.  When Mom worked in a high-end gift shop a few years back, an older lady came in dressed in an old over-sized coat.  As she walked through the shop the employees watched closely, believing her intent to be shoplifting.  The woman made her way to where Mom was working, and explained to her that she used the big coat like a bank, tucking extra money in all the pockets throughout the year, but never counting it.  At Christmas, she used the extra money to buy gifts.  She told Mom that she wanted to “shop ’til it’s gone,”   and several hours and many hundreds of dollars later they rang up the final item.   

I remember learning similar lessons as I started making my own way in the world…the best dressed people aren’t always the best tippers, the professors with the best CVI’s aren’t always the best teachers, and people you assume would be compassionate aren’t necessarily so.  You just can’t “judge a book by it’s cover.”  But we’re human, and we do.

Some days when Jenna and I are out and about it seems like we are constantly having to justify it…if she’s at the grocery store, why isn’t she in school full-time?  If she can go out with her boyfriend, why does she miss so many club meetings?  Why _____ – you fill in the blank.  BUT SHE LOOKS GOOD…and therein lies the key. 

Anyone with an invisible disability is living proof that you can’t “judge a book by it’s cover.”  I talked with a woman yesterday who is always dressed to the nines, make-up done beautifully — she has MS and has to remind coworkers that some days she isn’t just tired, she’s sick, and it’s going to take more than a nap to make her feel better.  We have a much loved teacher in our town whose fibromyalgia at times leaves her in excruciating pain – you’d never know it because she always has a smile and a hug for you.  Would we understand their illness better if they constantly dressed in pj’s or sweats and never did their hair and make-up before going out in public?  Or maybe, we think that if they were REALLY sick they would just stay home all the time.

It’s even harder for kids and young adults with invisible disabilities.  “He just doesn’t want to do anything but sit around,” or “She’s just spoiled and her parents don’t make her do anything,” or my personal favorite, “She’s just faking it to get attention.”  It would be so easy for Jenna and others in similar circumstances to do nothing but lay in bed and whine.  But she won’t and I won’t let her.  In fact, I push her to do whatever she wants when she’s able.  Sometimes that means she does the fun stuff and not the hard stuff.  Sometimes it means that she spends days at a time miserable to pay for her experiences.  But it also means that sometimes she doesn’t feel like life is leaving her behind.  It also means that sometimes she has to make some tough choices.

Last night, we had a long talk about life paths.  Jenna’s path starting detouring back in middle school.  Less than a year after being diagnosed with Type 1 diabetes, she started having issues that perplexed the doctors…peripheral and autonomic neuropathies; gastroparesis; weird symptoms like bleeding from under her fingernails, retaining and losing ten pounds of fluid in a couple days; frequent bouts of ketoacidosis-like illnesses; and occipital headaches that didn’t respond to medications.  The specialists even used her for a case study at Hopkins and then still blamed it all on us…poor diet, withholding insulin to avoid weight gain, denial, Munchausen syndrome, you name it.  The point is –from that time on Jenna’s life could never be like her friends and she was already making decisions that adults shouldn’t have to make.  She also had to start learning how to handle people who “judged her by her cover.” 

A couple weeks ago Jenna participated in a scholarship program and was awarded the title of Miss Morgan County.  She started the evening in her wheelchair, sat down in between parts of the program, and by the end, could barely stand on her own.  But she smiled!  Her thousand watt, light up a room smile.  She was shaking from exhaustion at the end, but she still took pictures with everyone.  She had a narcolepsy/seizure attack on the way home that left her temporarily confused about what had transpired just an hour before, so she went through the thrill of winning several times.  People who saw her that evening or saw her picture in the newspaper didn’t see that.  They saw a smiling, confident young woman in a gorgeous dress (thank you Jess!) who looked like she was ready to take on the world.  She made the paper again the following week when she was photographed hanging an ornament on the town tree to kick off the Town of Bath Christmas Celebration.  Gee, I guess that means she’s better.  NOT.

Last night Jenna made a tough decision to give up a four year scholarship after working for it for three and a half years.  What???  Is she crazy?  You’re her mom, you shouldn’t let her do that!  Maybe not, but as her mom, I want to see her happy.  The program coordinators were causing her more stress (that could be a whole other blog) and she just couldn’t handle it anymore.  She has more than enough on her plate already and an extra serving of unnecessary anguish just isn’t worth it right now. 

Jenna has already decided that she wants to take a year off before going to college.  She’ll need that time to continue healing but she’s not planning on resting — she’s already started a list of the community service projects she’d like to tackle.  We’ve all come to accept that a different life path doesn’t mean it’s a wrong path.  I’m sure there will be some who judge, both people who are older and kids Jenna’s age.  I feel sorry for them, especially for those who already judge her for having different priorities and for participating in some activities and not others.  They’re the ones who are truly missing out.  They’re basing their opinions on a book cover — how Jenna looks when she’s out in public and what she accomplishes out of sheer willpower, but that’s only a small part of the story she’s writing…a story that’s sure to have us all on the edge of our seats, laughing and crying, and  anxious for more.


2 Responses so far »

  1. 1

    Janice said,

    We all know Jenna is destined for something great, as evidenced by all the lives she’s touched so far in her young life. And sometimes, God wants us to choose a life path that is extraordinary, rather than the usual college-after-high-school path. Jenna can now be free to continue on the ‘divinely inspired’ path God has chosen for her!

  2. 2

    Janice Frank/Zakrzewski said,

    All I can say is God Bless you both. I’ve walked this path, both with my own illness and my son’s. Your story is a wonderful story….I know personally what great gifts and joy are in store for you both. So much will be gained by this experience.
    I too have a hidden illness and look fine. Saying “No, i can’t ” often, and looking just fine is not an easy thing for an adult to do, let alone a child.
    It’s already obvious that you all have reached a spiritual level most will only dream of.
    I celebrate you both, and I am so excited for your personal journey.
    Follow that path……it’s YOUR path…..and will take you wonderful places!!!

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