Here's MY Sign

 

Photo courtesy of Invisible Disabilities Association

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. Sometimes I wear an eye patch because of the double vision, but there again...could be an injury.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why?

I. Don't. Know.

Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I may walk unevenly."

Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."

Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."

I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."

And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"

We are out there. We are someone you know.

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.

And we don't want to be invisible anymore.

Please take the time to be kind to someone today.  You never know the difference you may make in an otherwise very difficult life.

²² But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, ²³ gentleness, self-control; against such things there is no law.”  Galatians 5:22 ESV

“Judge not, that you be not judged. ² For with the judgment you pronounce you will be judged, and with the measure you use it will be measured to you. ³ Why do you see the speck that is in your brother's eye, but do not notice the log that is in your own eye? ⁴ Or how can you say to your brother, ‘Let me take the speck out of your eye,’ when there is the log in your own eye?” Matthew 7:1-4 ESV

Dichotomy

I've just been thinking lately how "at war" I seem to be within myself.  It kind of culminated yesterday when I was doing a Bible study on suffering.  This particular lesson was on satan and suffering.  I guess one thing lead to another and I thought, really, the whole Christian battle is dichotomous, is it not?

Dichotomy.   Paradox.  Oxymoron.  Ambiguity.  Contradiction.

Our "inner being" is selfish and spoiled and wants what it wants when it wants it!  But the Holy Spirit in us, the "new" being, has the fruits of the Spirit: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.

But there's so much more to it than that, for me anyway.  I am at once extremely merciful and compassionate, yet equally adamant about justice for wrongdoing.  Not that they need to be mutually exclusive, but most times it seems like a person is one or the other.  There is a specific situation I have in mind for this:  take the example a woman in an abusive relationship.  It’s just she and her husband at home; her children are grown.  Yet she chooses to stay.

Part of me says, "Well, she's probably terrified and he's probably threatened her and she feels like staying is the right thing to do so no one gets hurt." (Compassion.)

The OTHER part of me says, "Toughen up!  Do what needs to be done and get out!"  And there is VERY little sympathy in THAT part of me.

Other instances:  I'm sort of healthy for a sick person.  I mean, my blood pressure, cholesterol, kidneys, liver, heart; all that stuff is just great.  But don't ask me to walk uphill in the sand for more than 5 feet because my legs will give out and I'll fall.  

Other people seem to LOOK the epitome of health, yet drop dead.  I knew a man in the peak of health, late 40's, early 50's, ran every day....just dropped dead on a run one day.  

Paradox.

I enjoy living in the country, most of the time.  The open spaces, the country air, the gentle breezes. Watching my son grow up in a way which, in my mind, is the best way a boy can grow up.  Room to run, frogs to catch in the pond, his faithful dog always a step behind him.  Not having neighbors in your face.  No noise pollution.  Clearer skies to see the stars because it's SO dark at night.  The amazing sunrises behind the barn.  The sunsets right outside the living room window that demonstrate God's brilliant love for us.

But then there are the bugs.  And mice.  IN the house.  And the 5 foot snake skin my husband found (still wet from its being shed) in our yard.  And that it takes 10 minutes to get a store that doesn't sell BAIT next to the bread. The fact that a tractor is more important than a car.  The smell.  Of cows and grass and cut hay and dirt and dog poo.  

And the noise.  Whoever said the country was peaceful has never lived where I do. The roaring and clicking of crickets and other insects, and annoying dissonant chords of the tree frogs.  The croaking of bullfrogs, and hammering of woodpeckers. And the birds!!  I love watching them, but some of the most beautiful birds make the ugliest noise!

Contradiction.

I guess my point is that there is simply more to any one person or situation than meets the eye.  So let’s try and show some extra compassion this week.  It may SEEM that you have all the facts, but the situation may be something you’d never expect.

Ecclesiastes 3:16-17 (NIV)

¹⁶ And I saw something else under the sun:

 In the place of judgment—wickedness was there,
    in the place of justice—wickedness was there.

¹⁷ I said to myself,

“God will bring into judgment
    both the righteous and the wicked,
for there will be a time for every activity,
    a time to judge every deed.”

Phhhhhhhhttttttttt!

Um, yeah.  That's me.  I am in a FUNK.  Serious-big-time-burst-into-tears-twelve-times-a-day-kind of funk.  It's not pretty.

I'm having a terrible time being thankful, which is pathetic, because I have tons of stuff to be thankful for.  I'm alive.  I shouldn't be.  I have a faithful, hard-working husband.  Not everyone does.  I have an amazing, crazy, wild, genius-miracle-child who I shouldn't have been able to carry.  I have a roof over my head and beautiful sunny yellow siding on my home.  I have food on my table.  Which many people don't.

And yet there's just this cloud.

Hanging over me.

I'm just sad.

So much loss.

I'm not consciously focusing on it, but there is a deep, overwhelming sense of loss. 

I wasn't going to post anything, but that's not being true to who I am, and I already tried NOT being true to who I am, and I couldn't handle it.  So this is me.  Flaws and all.  And I feel so flawed.  As a mom.  As a person. As a wife.

I know people love me.  I know God loves me.  I know, I know, I know.  But for some reason it just doesn't seem to be real right now.  Because I sit here.  Alone.  Wanting to be somewhere...anywhere but here.  With someone.  Anyone.  Well, ALMOST anyone.  If the Obama's called I'd have to decline.

I just feel like I'm reaching out to so many, and trying to give and give and give some more....and I'm getting shut down.  I reach out on a personal level to anyone locally, and I get shut down. 

The book club I was SO excited to be a part of....stopped contacting me because I couldn't make their first 2 meetings.  They changed the dates like 4 times.  The first month (August) I could go on the original date, but then they changed it to my son's birthday, because the man that used to teach history couldn't make the original date, and he is just so interesting and wonderful that they just hate to not have him there.

And how does that make ME feel?

Yup.

Less than.

Unimportant.

Without meaning.

And I know it shouldn't bother me that much.  But I've struggled with acceptance all my life.  And I really thought that I had found something I was really going to enjoy.

Then the second month (September) I couldn't go because I was sick on the SECOND date they chose.  The original date was fine.  I could have been there.  But then I got sick, and couldn't make the alternate date.  Then I never got any more emails.

That's what chronic illness has done to me.  It has robbed me of so many opportunities because people judge.  They automatically assume that I'm lazy, or a liar, or making things up, or being melodramatic....  The person who contacted me originally about this book group is a woman with a shop in town.  So when she SEES me, I look good, because it's a day I'm strong enough to go out.  But she doesn't get it.  No one who doesn't HAVE a chronic illness CAN "get it" no matter how hard they try.  But when people don't even try, it really ticks me off.

Anyway.  Enough whining.  I didn't bring any cheese to go with it, so I better stop.

This Should NEVER Happen

Well, it's the last day of National Invisible Illness Awareness Week.  I had a totally different post in mind, but something happened to a dear MG friend of mine that I just had to share, so that people are MADE AWARE.

I know about bullying.  I was a "victim" when I was little.  I'm not sure that's what they called it back then, and it sure wasn't handled well.  I've always been the fat kid.  Since kindergarten through high school, college, and into adulthood, I've always been overweight.  And especially in grades 1-9, I was mercilessly teased.  I remember one year I was terrified to leave my house.  I would just cry and cry.  Every day.

But that was school.  And I was a kid.  And it happens.  For the "usual" reasons.  It shouldn't, but it does.  But what I'm going to tell you now...this is THE most disgusting thing I've ever heard.

As I said, this happened to a dear MG friend of mine very recently.  She was at a gas station after picking up her children from school.  She is a single mom, and had been throwing up all that day or the previous one, I can't remember.  Regardless, it took everything she had to get her kids and stop to gas up her vehicle.

After sitting for 15 minutes waiting for an open gas pump, the second it was free a gigantic truck zoomed in and stole her spot.  My friend motioned that she had been there first, and the woman "challenged me to move her truck."  Seriously??  HOW old are we? So she moved on to the next pump.

Now as we all know, stress makes MG worse, and my friend was already near bottom.  She felt herself getting worse on the spot.  As she's pulling up to the next pump, a guy does the same thing! Zooms right up...She pulls her car right up on him, and Big Truck Chick comes over to tell her to move her car!  (The audacity of these people!!)  As Big Truck Chick comes over, my friend goes to get out of her car, and her legs gave out from under her. She fell to the ground.

Her sons were with her, and one of them had to get out to help her.  The other people at the station thought she was drunk, and were LAUGHING at her.  Her son yelled that she was disabled and asked why they were laughing.

This story both breaks my heart and infuriates me.  What kind of world do we live in?  I mean seriously?  The gas station p!ss!ng contest is one thing, but actually laughing at a single woman with children in the car who is in obvious distress?

SHAME ON YOU whoever you are, you heartless, insolent cretin.

Do NOT judge people.  And if you do, may the fleas of a thousand camels infest your nether-regions until you go mad.

Do You See a Mouse or a Lion?

Jacob fell half way down the stairs (the whole flight is 6 steps) getting Molly in. I asked him if he was okay, and he said, “Don’t say that Mom! There’s no blood!”

Already at (just about) 4, he’s associating seeing something (like blood) in order to have something wrong. I was really kind of stunned. How did he come to that conclusion? He knows that I’m not like other Mommas. He sees my trach. He knows sometimes I’m really tired. He knows I go to the “hosibal” (hospital) a lot. Yet he associates injury with blood.

Are we truly teaching this to our children? At not even 4? How is this happening? Did I inadvertently teach this to him when he asks for a Band-Aid and I tell him there’s no blood, so he doesn’t need one? (He asks for a Band-Aid for every bump and bruise.)

Maybe I’m reading way too much into this, and he just figured he was okay because there was no blood, ergo he didn’t need a Band-Aid. (He probably didn’t use “ergo”, but you get the picture.)

Maybe I’m oversensitive to it because I’ve been judged so harshly by so many for not always looking sick. I have said before and I’ll say again: Sometimes I wish I could “wear” my illness. Even with a trach! You’d think people would at least ask.

I hate to admit it, but I was just shown 2 days ago that I judge too. (I’m sure I judge more often than that on a less conscious level; but this was a blatant example.) There’s a show on TV right now called America’s Got Talent. A young man named Carlos from Puerto Rico was on the other night. He was very small, his English halting. He was sweaty and nervous, and could barely speak. He told the emcee he was going to sing. I thought, “Oh boy, here we go.”

Carlos opened his mouth and the most beautiful operatic aria came out of this slight little man. We DVR everything, so I was fortunate to be able to hear it again. (And again, and again…) When he sang…the confidence filled the room. He had this beautiful, rich, voluminous voice. It was one of the most beautiful things I have ever heard. He may have looked like a mouse, but he sang like a lion.

I still have so much to learn about life. About not judging the book by its cover. I certainly don’t want to be judged like that. So next time I see a mousy, seemingly uninteresting person, I will beware the lion!

What Do You Think?

Imagine this:

You see an overweight person who looks fairly normal park in handicapped and walk normally into a store. What do you think? Lazy.

You see a person parked in handicapped putting her own grocery items in the car. What do you think? I ought to call the police! A real handicapped person needs that space!

You see a person with droopy eyelids walking down the street with a slight drag of the foot. What do you think? That chic is high on something!

You see a person walking around with one eye closed and stumbling around. What do you think?
Drunk.

You see a person, dressed normally, in a restaurant at noon. Her speech is slurred quite badly. She has a child with her. What do you think? Oh my gosh! I can't believe that woman has been DRINKING! At noon, no less! And with a child!

You talk to a person at a social event who appears perfectly normal, except for a trach that you assume is from a car accident or previous cancer. You ask her what she does for a living, and she tells you she is on disability. What do you think? It's people like her that abuse the system and make it harder on all of us! I can't believe MY taxes are paying for her sloth!

Well, you would be wrong. Dead wrong. On all counts.

What if I told you that person has Myasthenia Gravis, a horrible, chronic, life long neuromuscular disease that robs a person of her independence. That person has spent countless hours in hospitals, doctors offices, clinics, with needles in her arms, not being able to talk because she has to hold still, and can't use ether hand to cover her trach. That person has been unconscious, on a ventilator, fighting for her life, at the age of 29.

What if I told you that person parks in handicapped because she normally walks out of the store so exhausted she might fall if she had to walk further?

What if I told you that person may have been able to go to the store that day, alone, and carried her paltry 3 small bags to the car (parked in handicapped), but that's the only thing she's been able or WILL be able to do that day?

What if I told you......that person is me.