Jon’s cellphone rang at 10:30 this morning, with his loud and excruciatingly bothersome Abba ringtone. Normally, that wouldn’t make any difference to us. However, we went to sleep around 5:00am so we were both in deep, deep REM slumber.
The call was from the Transplant Coordinator so she “had us at hello.” She went on to inform us that I’ve been removed from the heart transplant list. I’ll remain in such an uninsured purgatory until I either get health coverage, most likely either from the Affordable Care Act or Medicare, Part D.
Trust me, neither option is affordable at least to Jon and me. The coordinator just doesn’t understand that a $457 monthly premium is a large portion of my disability check. The Medicare plan is almost as expensive and unrealistic. Sacre bleu! Perhaps, an emphatic “Zut Alors!” is more appropriate.
I guess what followed resulted from the stress of the situation, its incurred bureaucracy, and the three month Medicaid runaround. Every Wake County employee has given me conflicting answers from those from the previous caseworkers. Let me skip further details of Medicaid woes and get to the heated phone conversation.
Both Jon and the UNC representative were soon lashing out at each other in a tone that was just this side of a shout. Jon just wasn’t having any of it. The beast within was awakened and released from self-control and any semblance of calm.
Within a few hours, Jon had written and sent extremely detailed emails to anyone from Medicaid as well as the NC Dept of Health & Human Services. His letters are epic. They have been known to give representatives from Progress Energy, AT&T, Time-Warner, and our two US Senators pause to even initiate a challenge to his queries. His “epistles” are fiery, thorough, and about as loud as the written word can be.
Add to that: Jon called a local TV affiliate to present the situation to the advocacy reporter. Of course, any resulting news segments always pull heartstrings and incense viewers.
It is now almost time for “Jeopardy” after over six hours of frustration, anger, sorrow, and the endless stream of empty words from unsympathetic government workers. Here I am, my heart functioning at only 10% and the state administration gives the idea that they jockey their responses until the client either gives up or dies. Seriously. My beloved and I use the “D” word cautiously and sparingly. Today, however, there might as well have been a banner on every webpage, text, or email with a big fat scarlet “D” emblazoned on the heading.
We both know quite well that the battle will continue tomorrow and into the weeks to come. Seeing is believing.
Jon is now exhausted if not spent. His dander is up, up, up. His aura is tainted and spoiled He is, however, poised for the fight ahead.
Welcome to my world, at least as it’s been since early last summer.
On this warm autumnal evening, I thank the Universe that I now have a better bark and growl.
(Image: “Tyrant Lizard King” by Andrew Sullivan, 2014.)