Dancing with the Monster
Written by Jonathan H on June 15, 2014
Hi CJ readers! My name is Jonathan, I’m 47, and I’ve been dancing with RA for the last 15 years in Santa Fe, New Mexico. It took me a little searching to find a way to declare my relationship with this…thing …that had burst uninvited into my otherwise perfectly normal life. I don’t like to say I’ve “had” RA, like some kind of evil house guest or a bad taco. I also don’t “suffer from” RA, because that makes me a victim right from the git-go. I’m not “sick”, in the sense that I don’t have a bug or germ or communicable nu-nu, or that I can even be healed. Formulating how I speak this part of my life was critical in establishing how well I could be. I tried ‘fighting’ for many years and it resulted in being beaten and exhausted. I settled on dancing because it bestowed the relationship some grace and a little dark humor. Maybe you’ve had a dance partner that just stomped the heck out of your feet, or one that whirled you unpredictably to dark corners of the dance floor. Maybe inside of it there were moments of joy and thrill, or you were left spent and helpless. All manner of things are possible without being in complete control. With dancing, I have the agency to choose my own dance steps, no matter the music or the partner. No matter how constricted my movements or how desperately I wish I were elsewhere, I am going to dance this dance. Because in all of eternity, this is my one chance on the dance floor.
So…we dance, the monster and I.
I am honored to have been invited to share this dance with you. I’m hoping that the sharing can help ease some of your pain and help you know that you aren’t alone. It certainly helps me to share the journey, so I thank you for reading my words.
Finally, a Diagnosis
Having RA, and being diagnosed with RA are two completely distinct things. Having RA is a terrifying place; a world of disorder and random agony for no discernible reason, accusations of malingering, slipping with work attendance, lost sleep, deep, deep fatigue. The basic ‘knowns’ of life, like the simple act of walking or opening a door, become treacherous tests of a betraying body. Simply opening the eyes and coming into consciousness becomes fraught with anxiety. Too many times being ambushed awake by pain in the middle of the night, dreams evaporating in the searing white sensation, makes the Awareness timid to be present in the body-shell. Then the questioning begins. The self-doubting… “Did I poison myself with all that drinking/drugs in college? Am I going to die? What did I do to deserve this? What is this, anyway? Is there no end to the pain? Is it all in my mind? Am I going crazy?”
My symptoms were atypical; flitting joint pain in major joints, unsymmetrical flare sites…in fact I scored a zero on the 7-point diagnostic checklist used by the American College of Rheumatology, and was sunk when my blood tests came back negative for Lyme’s, Lupus, and RA. At that point the analgesic prescription dried up and my presence at the doctor’s office labelled “drug seeking behavior.” And so on to the merry-go-round that some call “doctor shopping” and others call “a desperate act of survival.” You are an outcast and unwanted by the medical community, an enigma that garners no prestige and is a liability on the prescription pad. Woe betide the unwary who have no insurance in this trial, for what money the absences at work don’t erode, the desperation for answers will gobble up whole. Medical receptionists glaze over when you answer “None” to the question of insurer, and many specialists wouldn’t even entertain the thought of seeing me.
After nine years a new doctor prescribed more blood tests that came back with markers off the chart and casually diagnosed me with RA. I wept with relief right there in the sticky vinyl doctor’s seat in front of someone I hardly knew. I wept for finally having a validation of my experience that had been denied for so long. I wept for knowing that there was a reason I was broken, I wasn’t just….broken-broken. I wept for the access to sweet, sweet opioids that meant I wouldn’t have to kill myself to avoid another 9+ night. And when that was done I cried hot tears of rage at all the pain that might have been avoided had that *hinkty test not been unreliable and yet pivotal to relief.
Finally, I belonged. Even if it was only belonging to a diagnosis, and membership in a club that no one voluntarily joined, I belonged.
Welcome to the club!
*Jonathan explains the term “hinkty”:
Hinkty is a colloquialism. From the web: “Back to Random House: A later variant (spelled variously “hincty,” “hinkty,” “hankty,” and finally “hinky”), is described as an underground or police term for suspicious, wary, paranoid, nervous, jumpy, or even arousing suspicion. But it’s worth noting that the OED has an entry for “hink,” an old and obscure Scots noun meaning a hesitation or a misgiving; a separate verb form means to limp or falter.”
I am using it in the context of the test being of dubious provenance and efficacy, not necessarily to be trusted. Due to my South African/Scottish heritage I may be using unfamiliar grammar at times. I consider it part of my ‘flavor’, but appreciate feedback if it sometimes doesn’t make sense.
CreakyJoints is delighted to welcome Jonathan Hunter to the CreakyJoints Blogger lineup.