Some of these symptoms are the same that many of us have from brain injury,
without having TBI-onset narcolepsy.

c 1980 Stephanie St. Claire
c revision 1992 S. St. Claire

Sleeping

My body betrays me.
Someone once said,
"this too shall pass."
I wish that meant
NARCOLEPSY...
a big ugly word that makes people think
I'm wide awake
then suddenly asleep.
They don't realize
that it means
spending every day
in a fog, struggling
to stay awake enough
to cope with the world
around me.
It means being labeled
"lazy," and " uncooperative,"
by a world that believes
"you could if you really wanted too,"
"you need more willpower,"
"you just aren't trying hard enough,"
"if you can dream it, you can become it."
In my dreams I am awake all day.
In my dreams my muscles don't get weak.
I can laugh, cry, get angry,
and even make love,
without being suddenly thrown
into the abyss of sleepiness.
In my dreams I have energy.
I have life.

Reality.
Few people want to know
about reality.
Reality is wanting to take an
overdose, or pull a trigger.
Reality is fear:
"what will I be like in the future?"
"how can I still survive,
to provide for myself
when narcolepsy leaves me
half alive?"

Reality for some is being called crazy or stupid,
because learning is so difficult,
conversations hard to follow,
and things like "where did I put the keys?'
hard to remember.

Sleepiness interferes with holding down a job,
maintaining friendships,
coping with life.

Reality is...Sleep feels like an enemy,
instead of sweet repose.
No one else understands that
except those for who sleep
seems a constant foe.

Those people know that
polyanna attitudes
and wishful thinking
are for those who have
not dealt with personal
limitations
for which there are no
medical cures.

Looking "on the bright side"
is difficult when all of one's energy
is consumed with staying awake.

I no longer have patience
for pettiness in life.
I value my waking moments
beyond measure.

It is difficult to believe that
I am good enough
for who I am,
rather than for what I do,
but I am learning.

I am learning
that is is okay
to face myself
and my feelings,
even when sad or "bad."

I am learning what I can do,
and what I cannot.
I have learned to sort out
the wheat from the chaff
in friendships.
Those that except me as I am,
not pretending that I'm better,
or avoiding me when I'm not,
are friendships
that I hold.

Having and giving
understanding, acceptance, and love,
is a lifelong goal,
because at the end of this journey,
despite my narcolepsy,
I intend to find that
on the inside
I am whole.