On the "other side" of the mic

So today, I was afforded an opportunity to speak about my current financial situation surrounding my stroke.  [Video starts at the point where Chris introduces Deb, one of my co-hosts.  We talk a bit about our video-cast Beyond The Trailer Park and what we do and then delve in to my situation at the 1:21:40 mark.]  It was a very odd experience as I am used to being on the "other side" of the mic.  I'm used to being the one to ask questions and let the narrator tell their story,  not the one telling the story.  Although I had outlined the points I wanted to hit upon, I felt as if I may have stumbled a bit and was not as clear as I would have liked to have been.  Hopefully this may help clarify what I was attempting to say as my story is not just about me any more.

The biggest question I have been asked - why I decided to go public, besides the obvious of needing short term financial help.  People need to see that,,,

1]  Our current systems (primarily medical care as a whole with impetus from the insurance industry) really do suck, we have put company profits above our humanity to fellow man; the so-called "War on the Poor". I am hoping, in some small way, to put another face to that issue.

• 2 Thessolonians
• the slash and burn politics of the extreme right leaning, ideologues 
• 54 votes on repealing the ACA, 
• the attacks on Social Security and Medicare (that are so prevalent during election season)
• the so-called "junk food bans" where in WI, you can't even buy ketchup with WIC (see p3)

Now I don't want to make my situation about left/right arguments on politics of the poor per se, but sadly it is what it is,,,

What I experienced in the ER, when the hospital found out I had no insurance, definitely has short term ramifications. Not only do I feel that they dropped the ball medically, but also from a social aspect.  From a humanitarian aspect, I feel that my care changed.  Yes I do understand that the hospital ONLY has to "stabilize" my health crisis but IMO, that didn't even transpire (but that is a whole other issue I am dealing with).  

The hospital has a responsibility (they really do) to get the ball rolling as far as indigent care is concerned.  It is their responsibility to provide initial guidance in navigating the morass of paperwork; and there is good reason for that.  Depending on the final outcome, that initial contact "locks in" the date of service of said care. When one applies for let say Medicaid (as in my specific case), there is a 90 day window from the date of the application until approval where costs incurred will be covered in some manner.  So I may not have had Medicaid at the time of hospitalization but my eventual approval will be "back dated" and costs will be covered (it's kind of like applying for SSDI, going through an appeal, and being awarded monies dating from the time of the original application).  In essence they would not only be helping themselves but the patient as well.  My return to health would expedite my return to work which would lessen my burden on the system.

Somewhere in the last 25-30 years, that point has been lost.

2]  People need to see that humanity (albeit within the confines of the US border) as a whole is being harmed and I am only but one example.  Let me explain,,,

From my understanding my immediate care at the hospital was lacking, yes some standard testing was done minus one due to no insurance.  Although I presented with the classic signs of a stroke, "caused" by HBP that aspect was ignored.  I was given 2 pills and released 4 1/2 hrs later.  As Deb can attest, the first week was hell.  Now keep in mind I was in no better shape than when I entered the ER.

Normal care just for HBP is hospitalization.  Normal care for stroke is the same.  Whether that initial lack of care will exacerbate my current deficits remains to be seen.  (Normally aftercare such as therapies begin immediately in the hospital setting for good reason, long term prognosis improves ie I don't become a burden on the system as a whole,,, or in the words of the Reich, I won't become a slacker or mooch or a freeloader.) 

This scenario also crosses over into the care I receive from my GP who is also hamstrung by my lack of insurance.  Basically I am being medicated and that is it.  There are tests that my doctor would like to perform but can't due to cost.  These test would dictate my future care, the prevention of further issues and determine when or if I can return to work.

Oh,,,didn't you know I was a "real" member of society?  Yes, I actually did work.  Three weeks ago I was a fully functioning, tax paying member of society.  But, because I was part of the "working poor",,,

I'll just leave it at that :)

And that brings me to reason number three of why I have gone public and the most important,,,

My issues ATM are being taken care of.  Because of your generosity I have been given the time and means to hopefully get all the kinks out of my insurance issue; I don't have the pressure of "having" to return to work sooner than what may be medically safe just to keep a roof over my head.  And as I have said, that helps, A LOT.  But through all of this a realization hit, this is the type of shit I write about almost daily; the so-called "War on the Poor".  I have become my own subject matter.

Now my overall situation is nuanced, my work life is and has been influenced by previous factors.  I have a mental illness, bipolar disorder, which has impacted some of my life decisions; I can live with that and I was/am comfortable.  What I am not comfortable with, there are individuals in worse situation than I and I find that to be deplorable.

So, somewhere down the line, when my health is better stabilized, I hope with your help to maybe expand on what has been started with my situation.  I know there are many organizations out there that help in a variety of capacities.  I know that these organizations have rules to follow.  But sometimes those rules need to be bent and that is what I would like to endeavor upon in some way.

Your donations, your friendships, your kind notes have given me the time I needed to get the ball rolling without having the added pressure of "where will I go if,,,".  But imagine someone in worse shape than I.  I haven't lost any cognitive function, had my stroke been anywhere else in my brain, who knows what I may have lost (I am still learning about what a stroke is and what "damage" it may cause).  Individuals in that category who don't have the network of support, who don't have the cognitive capacity to understand the red tape are falling through the same crack I have and need the same help.  Hopefully together we can build on that.

Although I do not have a strong IRL network of support (OK,,I have none)  I do have and excellent virtual system and for that I am thankful.  ATM I am in a bit of a holding pattern as paperwork is processed etc.  I am gaining strength daily but have set-backs as well.  But y'all have made a difference even at a 1/4 of my goal.  As I noted in a recent update, to those of you who feel what you have graciously given is "not enough" or "wish I could have given more". Every penny counts in my case!!

I don't know what my future may hold, I am taking it one day at a time; it is all I can do.  I do know that I will much louder concerning matters of the heart.
__
Just a we side note:  I do receive SNAP assistance I have for a few years now and hence why I follow issues concerning SNAP as I do.  I am grateful that I have that extra help and it does stretch my income.  As I noted in my interview, I live in a very rural area, a one grocery-store town.  Under normal circumstances I do try to go to a neighboring town to purchase my food stuffs but of late I haven't been able to and it does make a huge difference.

What makes my situation concerning SNAP as a whole, a bit different, I am also diabetic.  So my diet is a bit more restrictive (and trust me I ain't perfect with my diet) than some.  Oh, and I don't eat beef (maybe once or twice a year) and I eat pork very sparingly.  So cutting items such as seafood (and no I don't buy lobster but I do use shrimp), spices, and various other products would limit my food choices even further.

I do cook from scratch and I am very good at it.  In a pinch, I can "live" off of $25/week for groceries, but it would not be healthy in the long run.  Taken on its own, issues with SNAP in my case are minor, but couple that with my other issues makes it a challenge.

Religion, a heap of nothingness

So this past evening I took part in a 3-way roundtable discussion centered on atheism and some craziness in the news.  In a round about way we hit on the problem of evil, euthanasia (death with dignity) and the "controversy" surrounding Brittany Maynard, the 29 year-old woman recently diagnosed with glioblastoma multiforme, the deadliest form of brain cancer and has chosen to die with dignity.

In our discussion I brought up a recent article penned by Joni Eareckson Tada, host of Joni and Friends and a quadriplegic since age 17 after a diving accident.

“But if I could park my wheelchair beside her, I would tell her how the love of Jesus has sustained me through my chronic pain, quadriplegia and cancer. I don’t want her to wake up on the other side of her tombstone only to face a dark, grim existence without life and joy; that is, without God,” says Tada, who is also a breast cancer survivor.

“There’s only one Person who has transformed the landscape of life-after-death, and that is Jesus, the One who conquered the grave, opening the path to life eternal. Three grams of phenobarbital in the veins will only provide a temporary reprieve. It is not the answer for the most important passage of her life.

What struck me in our conversation was fellow panelist Dave Foda's response, "that was pure selfishness."  The part I left off concerning Tada's "letter" was her final paragraph,

“The hours are ticking away; please, Brittany, open your heart to the only One who can do something about your pain and your death. Life is the most irreplaceable and fundamental condition of the human experience, and I implore you to take a long, hard look at the consequences of your decision, which is so fatal, and worst of all, so final.”

So in other other words, who gives a fuck about your pain and suffering, the anguish your family is going to endure just so long as "I" Joni save your immortal soul.  A point Heretic Woman aptly makes in our ensuing conversation while also referencing none other than Mother Theresa and her glorification of suffering.

Passive acceptance or even glorification of suffering can be adaptive when people have no choice. As the much loved Serenity Prayer says, “Grant me the serenity to accept the things I cannot change.” This attitude of embracing the inevitable is built into not only Christianity but also other religions, especially Buddhism. But passive acceptance of avoidable suffering is another thing altogether, which is why the prayer continues, “. . . the courage to change the things I can; and the wisdom to know the difference.”

By even her own words, Mother Teresa’s view of suffering made no distinction between avoidable and unavoidable suffering, and instead cultivated passive acceptance of both. As she  put it, “There is something beautiful in seeing the poor accept their lot, to suffer it like Christ's Passion. The world gains much from their suffering.”  Or consider this anecdote from her life:

One day I met a lady who was dying of cancer in a most terrible condition. And I told her, I say, "You know, this terrible pain is only the kiss of Jesus — a sign that you have come so close to Jesus on the cross that he can kiss you." And she joined her hands together and said, "Mother Teresa, please tell Jesus to stop kissing me.”

Although I did not realize it the time, both Dave and Heretic Woman brought up similar points that are also referenced in a second article concerning Maynard that I briefly highlight as a counter to Tada.

Thank you. Thank you for using the little time that you have remaining to bring attention to the “death with dignity” debate. I can only imagine the kind of physical, mental and emotional stress that you are currently experiencing. My imagination is not the same, nor could it be even close to the real thing. When I read about your story yesterday, my heart began to fill with an ocean of sadness. It began to swirl with emotions and thoughts as I tried to comprehend the depth and gravity of the situation that you currently find yourself in. It’s a natural reaction, to view another’s situation from your own perspective. Empathy is how we connect to one another; it’s our deepest form of love and understanding. In the vast depth of human emotion, it can be easy for anyone to lose their way. The strong emotional current can swell around us and we become lost in ourselves, lost from the initial response of love that we naturally feel for one another.

What I missed in my initial brief skimming of Nelson's "letter", posted over at Atheist Analysis, is that word highlighted in blue.That is what ticks me off in regards to Tada's crass response to Maynard's plight.  I just couldn't find the word at the time.

Here is another comparison Nelson makes that was also part of our conversation.

I do not understand why so many people feel it is humane to “put a dog down” but a human being doing this is wrong. Are people saying that a human has the moral right to make a choice as to when another animal’s life should end, but that same human does not have the right to make that decision about their own life? Then there are many people who are against your decision, because they feel that you are going against their god’s will. Their god gives you a brain tumor that is going to end your life many years before it would have otherwise, but they are mad at you. Am I missing something? Their god takes off years of your life, but you take off a couple days or weeks of tremendous suffering for both your family and yourself, and now they have a problem. Didn’t their god give you free will and wasn’t it aware that this would happen?

Yes I do ponder these things as I stated on-air.  I don't understand why some things bug me more than others.  Maybe it is as I stated that at one point in my life I held Tada up on a pedestal and as I get older those pedestals continue to crumble into a heap of nothingness just as religion has.  Individuals, like Tada in the end are no better than you or I.

Our conversation concering the above begins around the 48:00 minute mark,,,