I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Thursday
Jul262012

Feeling "Othered" but Wanting "Much More"

"Please, God, please, don't let me be normal." --My favorite quote from the off-Broadway show The Fantasticks.

I've always felt different.

Different's not bad, you say. My husband and I tell our kids the same thing. It's the child who is creative and quirky, interesting and NICE who is going to grow up to be somebody you want to know.

But I don't like to feel different in a you-are-not-in-the-group kinda way.

I've a friend who has spoken about feeling "othered" when people make remarks that push her out of the group/norm. She attributes this to race and skin color. She has suffered through people assuming that she does not need suntan lotion. She has heard inane jokes about slavery. All of this makes her feel like an outsider.

When I was a child, religion (menorahs, not trees,) hair (curly, not straight,) and shyness set me apart. In my town, we dealt with the religious difference by sharing ("come to my house tonight to light candles with us!") But I did drop out of my school's chorus when they sang religious Christmas songs and only one round of "Dreidl, Dreidl." Later, I would attempt to iron the curls (in my view: frizz) out of my hair. My parents sent me away to sleep-over camp to overcome my shyness and to meet other people of the same religion. (Note: this can be fun. This can be expensive. But as for overcoming shyness, it doesn't work.)

In 'other' words, being different was not really OK. And it still isn't, especially when the illness my child has separates us from the rest of life. We can't go on vacations. Heck, we can't even go to a party for a few hours because he fatigues or gets upset if someone speaks to him in an angry voice. I have trouble leaving the house at night because nighttime/bedtime is the hardest time of all, a time when both children need their mommy.

If my son had cancer, people would understand a little bit more. They might even bring over dinners once in a while. There are plenty of times when we just can't get a solid dinner on the table because we have too much illness going on. But we don't tell people that.

My child's disease cannot be seen on the outside. My son has beautiful, curly brown hair and the face of a baby Greek god. He has a killer smile and relates well with people. He's not shy. Unless you spend a few hours in his company, you would never know he has something wrong with him. He hides it all so well in front of non-family members. He hides most of his OCD from us. I just recently found out that he was counting stairs.

As a parent of a child with an invisible disease, I feel OTHERED. First of all, my son's friends' parents can feel proud of their children's achievements, or gripe about having to get a tutor to dig their child out of a math hole. My son doesn't want to do anything except football. And when football season rolls around, half the time, he doesn't feel well enough to practice or play. He feels dizzy. His legs hurt. This is Lyme Disease, which went undiagnosed for a long time.

I should be able to tell you what a smart boy my son is. But the Lyme Disease and PANDAS have affected his thought processing. He will tell you that he thinks he is the stupidest boy in his class. This from the kid who as a 4-year old, threw around words like, "nocturnal." When I read to him at night and he's relaxed, I can hear him making connections and predictions. His brilliance bursts forth in tiny stars and I'm lucky to catch them.

I should be able to tell you how creative my son is, but he writes 1 and 1/2 raps ("don't call them poetry, Mom,") and then leaves his notebook in the same place that he left a $20 bill, a bathing suit and towel, his phone.

People smile at me and ask how my summer vacation is going; they're envious because I'm a teacher and have two months "off." Nobody wants to hear, "Not great."

I'm up nearly every night dealing with a miserable child or his very sad sister who can't sleep in her bed for one reason or another. I'm followed around by my son who would not, could not go to camp and will throw an outright temper tantrum, even going so far as to yank the kitchen faucet away from its base or pick up a metal baseball bat--provided, of course, that no one else is around. And I know that he would never hurt me. But still. It's stressful. The moment his sister comes home from camp, he's picking on her. Pick pick, jab jab.

I don't go around telling my neighbor this. I can't even squeeze out the words, "Well, isn't it lucky I have two months off so that I can go to all these doctor appointments for my son, who is so incredibly sick...only you don't see that he's sick do you, and...can your child come over to play with him?"

Aaaarrrghhhhhh.

Othered.

And just like in the song, I want Much More. In another life, I sang this song on stage. Feels like a lifetime ago. It was a time of innocence, of not knowing that a world of PANDAS and Lyme exists. Now, it's these lines that speak to me:

"Perhaps I'm bad, or wild, or mad,
With lots of grief in store...."

On the other hand, Robert Louis Stevenson spent his childhood sick, and in bed, and we celebrate him today through his writing. Who knows what benefit this experience will have on us all. I do know that I want to someday meet up with my fellow PANDAS and Lyme parents and take a vacation together.

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