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Tuesday, November 3, 2015
Monday, November 2, 2015
New day
The start of a new day. A moment of unfulfilled promise and unfolding
opportunity. Blinking eyes, a yawn, a stretch – perhaps a delay of “just a few
more minutes” – but finally, inevitably, the stagnant comfort of sleep is left
behind for another day of activity and purpose.
The close of a long day. A winding down, a recovery, a time to regroup
and recover. A chance to lay down tasks and responsibilities and slip into
unthinking comfort. A reward for the day’s efforts, and a chance to prepare for
the next new beginning.
Two slavering hellhounds bracketing each day.
There is no ease in waking. Sleep brings blissful unawareness of the
disease mercilessly ravaging my body. A host of symptoms escort my wakening,
all clamoring for attention, and the day cannot begin until their needs are
met. So I remain in bed, pretending to sleep, willing my existence out of
existence for just a few more minutes – until, at last, my existence can no
longer be avoided. Thus begins another day.
And then, at the close, there is no unthinking collapse into slumber’s sweet embrace. Oh, it would be so easy to drop the burden of self-care and be a normal human being for one
night. But the consequences prey
on my mind, leave me no peace, demand compliance with lengthy and
uncomfortable treatments. So once
again, I lay in bed, pretending
I’m not yet ready for sleep, avoiding
the reminders of my body’s weakness, until
I can no longer pretend and
finally force myself into the
prison of my evening routine.
A bitter pill
Against my will
Until the day
When sleep will stay.
Against my will
Until the day
When sleep will stay.
Friday, September 4, 2015
Tuesday, August 11, 2015
What's your theme song?
I
really identify with Five for Fighting’s song “Superman.”
It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me
Since childhood, over and over again, I've heard people say how wonderful I am. I’m so strong,
I’m so brave, I’m so inspiring. But guess what? I didn’t
sign up for this gig. I didn’t want to be any of those things. I just wanted to be. I didn’t get a choice though, because
if I wasn’t those things, this illness would have taken me long ago. So I'll continue being those things, in order to cling to whatever this world will let me have.
But
I never wanted to be a hero. Remember that.
Tuesday, July 28, 2015
Monday, July 20, 2015
Fear
Quietly, secretly, drowning in fear
Politely, unobtrusively –
Like the assassin crawling inside my chest,
Silently spreading from airway to airway,
Congealing
Suffocating
Destroying
So many masks…
A macabre carnival of deception and death:
A façade of strength and grace, concealing terror and
despair –
A vigorous outer shell, concealing decay within –
Spin the wheel, round it goes, where it stops nobody knows
Which face will you see today?
Which place will I be today?
Where will the needle drop?
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