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Introduction

A little bit about me. I’m a special education teacher with a penchant for intellectual conversation and a low tolerance for dishonesty and bullshit. its been a bumpy road to get to this point but things are finally starting to look up.

Stick around if you like the things I write.

Collect call

The cool night air carries with it promises of warmer nights. I walk across the crowded parking lot of barnes and noble, sidestepping the broken glass and wads of discarded chewing gum. I pull on the heavy wooden door and walk inside. The florescent lights assualt my eyes and I take a second to adjust. Scanning the the cafe area I zero in a couple people I would like to observe. Not in a creepy way, I just like people watching. I like observing the way people interact with each other, either as strangers or friends something more.

I can tell a lot about people by the way they interact with strangers. For example someone that tells their whole life’s story to the barista without being asked is insecure and is looking for the assurance that their life has meaning and that someone will know their story.

I sit down a few tables away from a man that is quickly heading out of middle age and into elderly status. He is talking on a phone that is comically too big for his head. His other hand covers his mouth and nose the way teachers do when they don’t want anyone to read their lips. The man’s cheeks above his hand are red and his eyes are watery and brimming with tears. At first I can’t hear what he is saying on the phone but then he begins to speak clearer.
“When are you coming home? [Pause] can you at least tell me where you are? [Pause] can I send a care package? Wheres the nearest base? Maybe they can find a way to get it to you? [Long Pause] oh you can’t tell me that either?”
The tears spill onto stubbly cheeks and he does not make an effort to wipe them away.

“Well honey, I love you. Mom sends her love too. Write or call when you can. Till next time.”

He hangs up the phone and dissolves into a heartbreaking silent sob. The kind where the lump in your throat blocks out all the noise.

He stays like this for a very long time before he stands up and begins to walk away. He is stopped by an elderly man wearing a World War II hat. The old man says “hey son, I couldn’t help but over hear your conversation. May I enquire about your daughter? Shes in the military right?

The middle aged man looks as if he is going to break down again, but manages to nod yes.

The old man smiles and asks “how many times have you gone through this?”

The middle aged man says- his voice breaking- “shes been in the military for 5 years. Shes been somewhere in the middle east for the last 18 months. But its classified and she can only call once in a while. It messes me up pretty bad everytime I hang up the phone.”

The old man nods sympathetically, and says after a while “you should know that it will always be difficult. But if you react like this everytime you will die of heartbreak. Sometimes it is enough to know it is difficult.”

“What’s wrong with your face?” The lupus chronicles.

I have lupus. Which also means I have the characteristic “butterfly rash” on my face. It covers my cheeks and my forehead and looks vaguely like a butterfly. Now it just looks like a sunburn, but in years past it was not so benign looking. For roughly 2 years approximately 75% of my face was covered in white scaly skin that looked similar to plaque psoriasis combined with a bad case of eczema. As you can probably imagine being an 18-20 year old was slightly hampered by my appearance.

Yes, people stared. A lot. But I learned to ignore them. What was significantly more difficult to ignore was the neverending barrage of strangers coming up to me and asking

what’s wrong with your face?”

Or “why is your face so red?

You’re an alcoholic aren’t you?”

Or “Are you contagious? You shouldn’t be allowed out in public”

My stock answer was that I had a sunburn.

That seemed to placate most people.

But I shouldn’t be bombarded with personal medical questions from complete strangers.

I shouldn’t be embarrassed to leave the house.

It’s been mostly under control for years now. Only flaring up occasionally. But now I have topical medication and pills to alleviate the symptoms. It only looks mildly red.

But if I get a sunburn the redness is much more pronounced.

That’s what happened today. I went to a charity walk forgot to put sunscreen on. My cheeks and forehead were a good shade of deep pink. After the walk I went to a dinner party. Within minutes of sitting down at the table, one of the dinner guests- a middle aged Italian woman- blurts out: “what’s wrong with your face? Why does it look like that?”

All that old embarrassment and anxiety came rushing back like it had never left. I managed to smile and say softly “oh its nothing I got a sunburn earlier”

Normally I would have said something like “well I have lupus and it causes redness on my face” and then watch the person squirm uncomfortably as they realize their insensitivity.

But I wanted a nice uneventful evening. And I wasn’t really mentally prepared for such questioning. It has been a long time since I have been asked questions like that. So I didn’t say what I maybe should have.

But you know what? I shouldn’t have to say these things. I should have to always be on my toes with the next comeback or the next teachable moment in regards to my own health.

That’s not to say that I won’t talk about it. On the contrary, if someone is respectful and says to me “oh wow did you get some sun?” Or “you are a little flushed, are you warm?” I would be happy to explain everything.

I guess it boils down to:

Just be kind. Everyone is fighting a battle you know nothing about. Be kind always.

Names on A Wall- A reflection after visiting the Vietnam War Memorial in Washington D.C.

I stand at the start of a wall
it stretches out before me,
it turns and curves,
bends and swerves,
like an undecided snake, trying to find its way.

I walk over the brick
worn down by the soles of others who have trod before.

Names on a wall.

All I can see are names.

Rows and rows and rows

of names.

I stop.

And turn to face the granite,
my hand outstretched,
until I touch the cool, smooth stone,
I feel the grooves and sharp angles,
where the granite
was chipped away
to make a name.

Slowly, I trace each letter with my forefinger
when I am done,
I begin to walk away.

I am stopped,
by the sight
of my own face
reflected like a mirror in the stone,

standing

with the names

for an instant,

I am among the fallen.

I begin to think
not of the names
but of this one name
and Mr. and Mrs. Someone
who gave this name away
all those years ago.

There is Unknown Valor Here.

My heart is pounding in my ears as I sit in the parking lot, phone pressed to my ear. “What do you mean, he’s dead? He was supposed to come over for dinner this weekend.” My voice sounds hollow and alien to me as it comes out of my mouth. I hang up the phone and just sit quietly for a minute to gather my thoughts. I feel the tears being pulled up from my throat and force the lump back down. I am not ready to release this emotion yet. I fumble my car key into the ignition and turn it on. My mind is hazy and distracted, somewhere in there is a thought that maybe I shouldn’t drive until I have a clearer head. But I don’t listen.

I drive without knowing where I am going, barely obeying traffic laws. Until eventually I end up in front of a house. Glancing around, I realize its my grandfather’s house; or rather, was my grandfather’s house.

The old 3 family house in what used to be the nice area of town. Green and white wooden shutters that haven’t been painted or replaced since Nixon was in office, are now faded and the paint has been eroded away. The front porch is rotting and sagging with debris piled on it as if someone was squatting there at night. “Honestly”, I think to myself, “they probably are”.

I look under the mat and find a key. It opens the front door. I have never seen the inside of this house. My grandfather was a private man, always preferring to go to someone else’s house rather than have people over his.

Quietly, I look around at the knickknacks and treasures he held so dear. His daughter’s dress from when she was 5 years old, his son’s stereo equipment and desk from 40 years ago. His wife’s kitchen gadgets, which are now antiques.

I feel a force pulling me up the stairs, I heed the call and begin my trek up the creaky stairs, careful not to step on any rotting wood. I go all the way up to the attic. In the corner there is a pile of stuff, boxes upon, boxes upon, boxes of stuff.

Underneath all those boxes, I see a wooden crate. It looks old and weathered. Quickly I move everything else out of the way so I can get to the wooden box. It is not locked. I heave open the heavy lid. What I find makes me gasp audibly. There are pictures of a man I recognize as my grandfather as a young man. He is wearing a uniform that I didn’t know he wore. USMC. I begin to look through the rest of the trunk and find his rifle; a 1903 Springfield, as well as two sets of uniforms both neatly folded with military precision. Underneath the uniforms; there is a medium sized black case. It looks like a jewelry case but bigger. I think I know what’s in the case. With shaking hands I reach out and gingerly pick it up. I open the case and find 6 medals. I look closer, I see the Medal of Honor, a Purple Heart, Navy Cross, The Navy distinguished Service Medal, The Distinguished Service Cross, and the Silver Star.

I had no idea about this side of my grandfather. It was a complete surprise to me. I went through some of the paperwork in the trunk and found that he was a sniper in the Pacific Theater. He once held off an entire Japanese unit by himself so his buddies could take cover. That’s what the Medal of Honor was awarded for. The Navy Cross was for carrying a young private that had been badly injured through an open field while a firestorm of bullets whizzed around them to safety. The Purple Heart was awarded to him when he was shot in the abdomen. And on and on. Pages and Pages of accounts of valor and bravery. And I never knew any of this while he was alive.

Suddenly I knew why I was sent to his house. He wanted me to find this secret. I knew he had to be honored for his deeds.

I slipped the case carefully into my bag along with his uniform and service pictures. Feeling full of purpose, I headed home to share my newfound information with my family.

Sometimes I feel like an imposter.

Sometimes I feel like an imposter. Sometimes I feel like I don’t belong here, like I cheated someone to be here.

When I was a child I had a series of series of seizures coupled with extremely high fevers in a span of about 3 weeks. I was given Last Rites 2–3 times, and my parents were told to “get things in order”. When I survived the last seizure but was left unable to use my limbs, doctors told them that “that was as good as it would get- the damage was permanent”- and they said would “probably affect me cognitively” They thought I would be blind and in a wheelchair with little to no hope for recovery.

This was in 1995. 23 years ago. I was 5 years old.

I spent 2 months in a wheelchair. The right side of my body was worse than the left. There was muscle spasticity and tremors that severely affected my right arm and leg. Then my body began to heal. I gradually regained control of my left side first then the right.

I began walking with a walker and leg braces roughly 6 months from the start of the ordeal, graduated to braces and crutches at 7 months and just one brace on the right leg at 9 months. Finally at 11 months I was able to get rid of the brace all together. I was 6 years old

I still had to relearn to read and write all over again. I learned to read, write and do math at a first grade level by the time I entered preschool. After the seizures, I had to relearn everything. I caught up with reading fairly quickly. But writing was a different story. I couldn’t functionally write again until I was 8 years old. I had a fairly severe tremor in my right hand and it prevented me from grasping anything in that hand for any length of time. Gradually I regained the ability to write but the effects are still there. My penmanship is “doctor- level scrawl” at best and I don’t posses the ability or the fine motor skills to write in cursive. I can control the tremor long enough to sign my first and last name but anything longer that is next to impossible.

I still walk with a slight limp and a have shaky hand that most people attribute to nervousness or something similar. But behind the scenes I have significant lower back, hip, shoulder and leg pain as well as weakness in those areas.

If you and I met, you probably would never guess any of this.

But… its true.

Which brings me to the imposter part:

I’m not technically disabled. I can function well enough to live my life but I don’t quite fit neatly in the non-disabled category. 
But I also have some significant physical deficits- but because I can function in society with out accommodations I can’t identify as a person with a disability either.

I know there are a lot of people who would give anything to have my “problem”.

and believe me I’m really not complaining. I know I’m lucky. I know things could be worse. Way worse.

Its just….

Its exhausting.

Just the other day, at work, I complained that I was in pain and I had 3 women 10–15 years my senior jump down my throat, saying that I didn’t get to complain because I was too young. My pain was invalidated because of its invisibility and my age.

But if I still walked with a leg brace and said my leg hurt, no one would think of saying anything to question me.

I guess it boils down to this:

My suffering does not invalidate your suffering. Its not a race of who has suffered the most misery.

Everyone is fighting a battle you know nothing about. Let’s try kindness first, and see how far that can carry us.

Apologies Unwarranted

TV blaring, screaming about the latest shooting, robbery or fire

Bad news all around

the lines on your face grow deeper,

weary,

tired

steeling your blazing blue eyes,

you look at me

mouth moving with effort

to produce sound

an apology.

“I’m sorry I was a bad father”

anguish carves lines deep into your face

years of absence

missed birthdays

bedtime stories

lazy sundays

first steps

first words

all in the name of an

oath to “protect and serve”

Ice Cream

The air is warm. The ice cream shop looks increasingly inviting. Finally I decide to go in and get some cookie dough ice cream. Waiting patiently in line, I watch the man in front of me, talking to the cashier about his order.

This man is covered in full sleeves of tattoos, he’s young, maybe in his mid thirties. He looks like the kind of man upper class people are taught to fear. But I can tell by his demeanor he is respectful and kind.

The door behind me opens and I turn to see a lady with long brown accented by a white sweatshirt enter the shop.

The man in front of me turns and a look of recognition and a smile comes over his face. He asks her what she wants. She waves him off saying she’ll wait in line. He shrugs. I let her go ahead of me because I am in no hurry.

A look of gratitude passes over his face. I have a feeling his day has been arduous. The couple waits for their ice cream together. I overhear bits of their conversation. Words like “hospice” find their way to my ears.

The tattooed man drops his head and he says “I’m not worried about the pain.” I’m just worried about the rest of the family.”

Tears well up in their eyes and mine. Then like ice cream melting they embrace. They separate and are soon out the door and into the rest of the world.

Be kind out there, always. Everyone is fighting a battle you know nothing about.