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.

I have Lupus. How not to piss me off. A tutorial.

If you couldn’t guess by the title, I have Lupus. Granted its pretty mild, compared to others. If I we met and spent time together, you wouldn’t be able to tell at first glance that I am not as healthy as I look. Trust me, that is just fine with me.

BUT…

BUT- if I do disclose to you that I have this disease, please, please do not offer me your favorite home remedy (I already drink enough tea to drown a horse.) or ask me if I’ve really been diagnosed or if I “just think” I have it because I don’t look sick enough. Also don’t tell me what medications I should be taking because someone you know took it, and responded well. Chances are I have either already tried whatever medication you are suggesting or I can’t try it because of other medical interactions or side effects.

In short- unless you are one of my doctors: you don’t know what works for me, what doesn’t work for me and what I’ve already tried.

Even though this disease is on the mild side that doesn’t mean it doesn’t affect me. Chronic pain, Chronic Fatigue. Increased chance of infection. Increased healing time after injury or illness to name a few.

Let me just say this: I am usually really open with people about this condition. Everyone I work with knows I have it but I don’t broadcast it. If it comes up in conversation- then I let it. I have an open discussion about it. The majority of people are super respectful and genuinely curious, but I had an experience the other day where a coworker and I were chatting and the topic came up. I mentioned that I get sick more often because I have lupus. She responded by asking me if I’ve actually been diagnosed or if I just Googled my symptoms and that’s what I think I have.

I paused for a beat, dumbfounded at the disrespect, I icily replied “No I was diagnosed 7–8 years ago by multiple doctors and a lot of blood work.”

Undeterred, she told me that her daughter had lupus years ago and took magnesium supplements and was cured. Therefore I should take magnesium or maybe I just enjoy the tragedy of having lupus.

Fuming, I replied that I also have a condition called hypoparenthyriodism. Its a condition where the body cannot regulate blood calcium, magnesium or phosphorus levels. The calcium levels are too low and the magnesium and phosphorus levels are too high. therefore I can’t take magnesium supplements or else it will push them higher. But I do have to take 8 calcium pills everyday. Its a lot. Somewhere in the ballpark of 4,800 mgs.

She responded by saying magnesium is what makes calcium work so if I took that I wouldn’t need to take as much calcium per day. I reiterated that I literally cannot take anymore magnesium because my levels are already too high. and there is magnesium in calcium supplements as well.

She made an audible sigh and rolled her eyes at me. I tried to let it roll off my back but its been bothering me.

This woman is not a doctor. Even if she was- she’s not my doctor- nor was I asking for her advice.

In short- Just be respectful. Everyone is fighting a battle you know nothing about. Lets try kindness first and see how far that can carry us.

Postcard to Heaven

I find myself looking for you at every turn. In the puddles on the sidewalk on my morning walk to work, in the car behind me and everywhere else in between. I keep hoping I’ll see you in the background hiding behind something for all these years. I wonder what you would look like now 6 years later, with something that might pass for wisdom in your eyes. You had experienced enough pain to have lived a thousand years, yet you were only 17.

I wonder what you would be doing right now, you had so many plans and so many dreams. There weren’t enough stars in the sky to wish for them all. You used to say:

“I’m going to be a writer and artist and I’m going to change the world”,

with just enough of a smile that I knew it was true. I wish that you had been able to accomplish at least one of those dreams, but you were only 17.

After I found out you were gone I found myself seeing you everywhere, in the hallways at school, in the back of the room in math class throwing staples at our teacher, on the school bus ride home talking animatedly about boys and shopping and all the other pursuits of teenage girls, but most of all I saw you in the background of the most random places; the store, a restaurant, walking down the street.

What bothers me now, is that I have stopped seeing you. I look and look but don’t see your face anymore. As long as I was seeing you even if it was just a flicker it meant that I haven’t forgotten, now I find myself struggling to remember the specifics of your facial features, the jauntily way you walked, and the way your voice sounded. It scares me that I may be forgetting you.

It scares me that I am moving on and growing up without you. I am graduated college and you never even got to graduate high school, never got your license, never went to the prom, never turned 18 or 21, got married or had kids. You never heard your name change to “Mom”. You never got to see your hair turn gray with the worries and trials adulthood brings. You were only 17.

Today would have been your twenty-ninth birthday but eighteen would have had to come first. I stand at the wrought iron cemetery gates, the cool spring air carries with it promises of warmer nights. The air weighs heavy with aching guilt and unending sorrow. I grasp the bouquet of flowers so tightly in my right hand that my knuckles turn white in the moonlight. Slowly, as if walking on ice, I move toward the graves. I scan the headstones and markers until I see:

Felicia Periguni

April 15, 1989- December 12, 2006

I fall to one knee and release the flowers from my clenched fist. In the silence of the night, I hear the clear cellophane that encases the flowers crinkle as it hits the ground. It startles me. The grass is still wet from this afternoon’s shower and I can feel the earthy water seeping into the knee of my jeans. The wind blows cold, the trees sway in unison. The cold sends shivers up my spine. I bow to confess:

I wish you were here.

I miss you.

My eyes begin to burn with fire creating twin rivers of salt water on my cheeks, that quickly to turn to ice in the wind. I quickly wipe my face clumsily with the back of my hand and look around habitually to see if anyone is near. Tears still flowing, watering the grass that grows on your grave, I stand up. I raise my head and see the clear black-blue sky contrasted by starlight. There are so many stars right now, but I only need one. I think about the time, another lifetime ago, when I thought the stars served as postcards to Heaven. I think I’d like to send one now.

What would it say?

I’m sorry. I’m sorry I didn’t save you. I’m sorry all those wishes you sent to the stars never came true. I miss you. I wish you were here.

I glance down and see the flowers I dropped earlier. Purple carnations. Your favorite. Remember? You don’t like roses. They are so shy and proper and tightly wrapped.

Carnations you said,

are open and proud, unafraid to expose their most vulnerable flesh.

A small smile stretches across my face at the memory and I look up at the stars once again.