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!