An Insomniac’s Musings

Stillness. Quiet. Calm. Call it what you will. The insomniac in me relishes these moments. Even though tomorrow I will be tired. Even though tomorrow I will curse this inability for rest.

Right now I am grateful.

I am grateful for the hum of the air conditioner creating a relaxing white noise while a cool breeze plays softly across my face.

I am grateful for the darkness. It forces me to look inward, something I don’t do nearly enough in the light.

I am grateful for the solitude. Solitude, it’s a desire that’s rarely satiated.

Maybe it is a different kind of rest that I crave.

I try to let the emotions and pain come as they may. Welcome them with open arms. They come. They visit and then then they’re on their way. Sadness, happiness, pain, joy all of it. There is a place here. If they are allowed to come as they please they will usually leave as they please as well. But each emotion requires the others’ prior or future presence. One cannot know happiness without sadness and pain. They give each other intensity and contrast that we would not know otherwise.

I am reminded of Rumi’s poem

The Guest House

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

— Jellaludin Rumi

Without Hesitation

Last week I went to The Sailfest in New London, Connecticut. For those of you that don’t know, it is the largest fireworks display on the east coast. People sit on the piers and watch the hour long show in sync to the local radio station. It is quite the spectacle. Upwards of 30,000 people descend on the area.

The piers are surrounded by waist high metal railings. The concrete pier itself juts out about 8 inches past the railings.

Just before the fireworks started I noticed that there was people sitting on opposite side of the railing with their legs hanging over the ledge. I knew the water was deep and about a 6 foot drop from the ledge to the water. And the people. There were a lot of people. Of all ages. Elderly people. Kids. Toddlers.

I have been a certified lifeguard for 15 years.

When I saw those people sitting/standing there, my heart started racing, my mouth went dry. My mind went into overdrive, trying to figure out what I would do if one of those people fell in.

My friends not realizing how serious I was started joking and lighheartedly teasing me. They asked me if I would jump in if someone fell in. Without thinking about it I immediately replied “of course. I wouldn’t even hesitate.”

Shocked, they replied that they wouldn’t, in their minds those people were stupid enough to sit there, if they fall in its their own fault.

I told them that I wouldn’t be able to let someone drown, if I have the knowledge and capability to prevent it. If I didn’t jump in and they didn’t survive; I don’t think I would be able to forgive myself.

Then they started realizing that I was completely serious. One of my friends took notice that I was nervously pacing our small area trying to see as much of the water as I could. I could feel my heart beating like I was on the treamill and my muscles twitching, ready to react. My shoes and socks were off and safely under my chair. My phone and wallet were in my bag. Then the fireworks started and I found myself unable to enjoy them because I kept scanning for trouble.

I never had to jump into that water, thankfully.

But I keep replaying in my head how it would have played it out even now four days later. How would I have gotten the person out? What would I do if there was more than 1 person? Would anyone else jump in to help me? What if someone fainted or had a seizure that caused them to fall into the water? How would I get then out in time to provide care such as mouth to mouth or chest compressions?

This is a common scenario that plays in my head whenever I am near water. Once a lifeguard, always a lifeguard, I guess.

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,


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.