Dec 29, 2021

I have a feeling that this post may be heavy handed, for multiple reasons. The past years have been difficult for us all and I hope that everyone is safe out there. [Knock once if ok, knock twice if trouble].  For myself, the mountain of stress has been treacherous to climb. I got very ill and what started out as feeling tired and worn down has evolved into something more permanent and life changing. The words chronic illness could fit the bill--dynamic disability is another--suffice it to say that my life is no longer what it was. In truth my old life is gone.  After multiple doctors, several tests, specialized machinations, dozens upon dozens of a three card Monty of fluid draws...an answer was found. A genetic disorder known as Ehlers-Danlos Syndrome (hypermobility and elasticity) has done a serious number, specifically, around the junction where spine and skull meet. This has lead to Craniocervical Instability (CCI), a wavered detachment in the Craniocervical junction, which can cause a myriad of other problems [Dysautonomia, GI, Gait, Proprioception (spatial buoyancy)]. On top of that, one of these specialized tests found nerve damaged peppered throughout my fragile vessel in the form of small fiber neuropathy (SFN) and Postural Orthostatic Tachycardia Syndrome (PoTS), which is dizziness due to lack of oxygen when transitioning posture (sit to stand). This laid on top of myalgic encephalomyelitis/chronic fatigue syndrome [(Me/CFS) which I had since nine] and nocturnal Epilepsy, and call it a night! Still with me? It is a lot. Believe me, I know. I live it. Day by day, neither good nor bad; all good days have bad moments and vice versa, life is moment to moment. I still write but the brain fog often wins out. I even bought a typewriter: Corona Four from 1928, Ms. Parker, to write the first drafts of the next novel. Where that day is, I don’t know. My dad is my care taker and the support from both our social circles has been unbelievable to describe. We launched a GoFundMe [https://bit.ly/3EhYyB5 ], and I had my first of three procedures. Two of them are major surgery and the first one went very well. I wait on the shaky foothill of the healthcare system of Stanford Health, and hopefully a new Covid surge will not bump my "elective" surgery.  I got heavily into art, digital art, and even opened up a design store on Threadless [https://photoalchemy.threadless.com/ ] It is a whimsical internet emporium with graphic tees, wall arts, rugs, buttons, and stickers galore, among countless items.  Other than that, its been a very cathartic process when it comes to saying goodbye to the life I knew, but I am excited by what is to come for my new life, with plenty of resting, pacing--someone with chronic illness told me this, "You don’t have to stop living, but you gotta stop pushing," words she would have told the younger her as they were just getting ill.  Words that I have to live by if I am to survive. Challenge Accepted!  But first, I wish you all a happy new year.  And as I stand, rooted by my cane, underneath my Porkpie, heed these words: Write that story you have wanted to tell, paint that painting of your dreams, and share in the creativity that is this beautiful chaos of our universe. Checkmate and rummy my dear Gladiators, C.P. Wyszynski | Photo Alchemist