Once upon a time is the basis of every great story. It leaves the promise of fulfilled fantasy,
the threat of unknown horrors, and the potential for the illusive happy
ending. Most of us were at some point
influenced by these fairy tales masked in a bit of violence and despair. The dream that even when the big bad wolf
eats our dear old granny and uses her as a granny suit ala Wild Bill of Silence
of the Lambs (I wonder if the wolf insisted on granny putting the lotion on her
skin with threats of a hose down), that in the end good and beauty would
prevail and the big bad wolf would be slain for the peace of the world at
large.
Living with an immune disease is sometimes like running from
the big bad wolf every moment of your life.
The only difference is the illusive slaying of the evil beast is truly a
fantasy most of us dream of, but have little realistic hope of ever seeing in
our lifetime. I know many like me follow
the medical news in hopes of that silver bullet that will turn our nightmares
of drooling snapping jowls and yellow eyes called immune disease into the
“normal” person we once were, but without the dreaded result of killing us in
the process.
The commonality of fighting immune disease with fighting
monsters in stories seems very real to me.
Every new treatment holds so much hope of releasing me from the claws of
the monster and freeing me to forever after in blissful normality, but in the
same breath I wonder which bullet will be the one that brings my death or
further infirmity. Which one will cause
a severe allergic reaction (as many have luckily not fatally), which will be
the sea witch’s curse which allows me to walk and dance on land beautiful and
whole only to have it wrenched away when the time has expired without my truly
bestowing the adequate gift of payment to the witch and not only returns my
scales, but plunges me into depths of pain I had happily forgotten
existed.
Currently on Stelara I thank the pharmaceutical white
knights every day for the relief I am having even on days when relief is
illusive and the white knight somewhat resembles Don Quixote jabbing at leering
windmills because I know, or at least I
pray, that the appearance of the dark shadow that is my wolf will again retreat
soon. Yet with every bad day I wonder
and fear if this is the time that the beast has won. The day when my body has finally been overpowered
once again by the aggressor within never to emerge somewhat whole and to outer
appearances unscathed by the darkness that lurks within. When will the day come when I return to the
waiting game for the next valiant hero to attempt to slay my dragons of pain
and disfigurement that lurk in my core through to the coding of my being? The who I am atomically with its flawed and
self-destructive DNA? When will the
dragon really win or is there truly a hope of slaying the beast without being
eaten whole in the process?
In the core of my being I do not believe I will ever see a
cure for myself, but the true fairy tale for me that holds a glimmer of hope is
that the next generation will find the dragon slayer and that my generation
will be the cattle fed like sacrifices in the process. I am at peace with that as long as my
children and grandchildren and their children have hope of being able to never
live with this torturous existence. I am
a wasted rescue at this point because too much damage has been done, but I am
not a wasted life. I will proudly stand
and stare without fear at the beast and let it slowly consume me if it means my
failures help provide successes for our future.
Now this doesn’t mean I am lying down and waiting for death. I will fight kicking and screaming, likely
causing myself more damage and pain in the process, prolonging death at the
jaws of the monsters as long as I can. I
am not built to surrender. I am built to
fight and claw, make as much noise as I can, cause as much damage to my
aggressors as I can and when I go we will both show the scars of our fight. Accepting I am the sacrifice to progress
doesn’t mean I am a lamb. The best meals
are meals well won so come on wolf, dragon, sea witch, come and have a taste
and may I leave a bitter taste in your mouth because some day my kind will slay
you. It may not be me, but someday my
psoriatic siblings, our offspring and those who fight for and with us will
win. We will have you crumpled at our
feet and you will be relegated to the things of fairy tales.
We will have a happily ever after!
