When I was a little boy
all my friends told me about
the monsters under their bed.
But I knew nothing
of demons in my closet
but the monsters in my head.
In the middle of nights that little boy would wander through the dark,
to find Mommy and Daddy’s room,
left eyebrow burning, body trembling, pajamas soaked with tears.
He didn’t know what was wrong with him but he knew that they would know how to fix it…right? At the time they just tried to explain
what he’s experiencing is a bad headache called a “Migraine.”
They would give him something and attempt to get him back to sleep.
The idea that orange-flavored Motrin could cure a cluster headache is impossible
but how could they have known?
"He gets Migraines."
"Oh, I got those all the time when I was younger."
But then the boy would get mad. That couldn’t be right.
That couldn’t be right.
So many other people couldn’t experience
what he experienced
and just go on with life.
The years went by and the little boys trembles changed to a teenager’s staggers.
He was so much older but on those nights he became that little boy in a 220-pound body,
and stagger into Mommy and Daddy’s room just the same.
He would roll around on the floor and throw his head against the wall
because that felt so much better than the horrible pain surrounding his left eye.
His mother would cry along with him and his father would try to rub his back
but he barely knew they were there.
Want to know what it feels like? First take your top left eyelid. Then pull it over your head.
The attacks lasted for hours and can happen eight times a day for days.
Then add nausea, vomiting, hallucinations, trembling.
Mix, let sit for three days, and serve a minimum of four times a year.
When they finally sought professional help, it was a horrible misdiagnosis
from a doctor who treated him like a guinea pig, talked down to a school nurse
who frantically called him during an attack asking what she should do,
and just never seemed to care in the first place.
I see, I see.
No way. No WAY that’s cluster.
You suffer from MIGRAINES. Plain and simple.
We’ll start you on this, this, this, this, this, this, and this
Well if that doesn’t work we’ll do all these
This’ll work for sure. You’re 16 now.
Goes under the tongue, boom.
...that didn’t work?
It wasn’t until the second neurologist that he was finally diagnosed
with the worst pain known to medical science, Cluster Headache.
But the word headache shouldn’t even be used. It’s the biggest understatement in the book.
Some people use “Attack.” That’s better that “headache” at least.
It wasn't long before the new prescriptions came. They don’t cure because they aren’t cures. Sometimes they make the pain bearable for a few hours.
Which is better than nothing.
But nobody likes to be on so many many medications.
They do things to you.
Topamax, Codine, Excedrin Capsules
Promethazine, Maxalt, Butterbur All-Naturals
These are a few of my favorite pills
When the monsters
In my head take
from me what I had
I swallow a few of my favorite pills
and then I don’t feel.
But this boy is far from healed and he never will be.
He’s sick of everyone saying “I can’t believe he stayed home. It’s just a headache.”
Every day he wakes up feeling like Katniss Everdeen, not knowing
if today will be the day that he’ll get struck down.
Every night he goes to sleep feeling like Leonard Lowe, not knowing
if he will wake up…or if the little boy will.
We all can relate to this boy. We all, in our own way, have Cluster.
We have something in this life that we are afraid of,
that we are afraid will happen, but we know will happen.
Every day we get up and walk the balance beam of life, carrying school, work, family, friends, sports, theatre, music, literature, financial worries,
pills, tests, appointments, and personal conflicts.
And in the middle of this balance, in your way, lies your personal “Cluster.”
Its hard to walk on this rope, sometimes it’s thin, sometimes its thick,
and sometimes is frayed to a thread. And you might fall.
But its okay. Because we’re all here to reach down and help you get back up.
And if you ever feel like just giving up and jumping off the wire, remember the little boy.
The little boy is right here, and guess what, he understands, and he’s still going too.
Because something better will come along, and you have to be here for it.
It’s a price we have to pay