Tag: Illness

Every May 12th is Fibromyalgia Awareness Day. It is celebrated by raising awareness of the disease in the hopes of giving those who may be suffering with it some hope as well as provide opportunities for anyone to express support for those suffering with the disease.

So what exactly is Fibromyalgia? It sounds kinda funky, maybe even pretend? Isn’t this some sort of cop-out for lazy people or people with hypochondria?

The answer to the above is a resounding NO!

Fibromyalgia is a largely misunderstood disease that afflicts anywhere from 2-6% of our population (depending on source), primarily women but there have been concerns that the gender disparity may be that men tend to under report pain and fatigue.

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 A friend once told me that the wealthy elite didn’t want to just “roll back” the New Deal, they wanted to roll back the entire 20th Century. His point was that all the social gains of the 20th Century were granted to us in order to combat global communism, and that with the collapse of communism the wealthy elite is going it take it all back.

  I didn’t fully appreciate his sentiments until recently.

  The recent upsurge in global piracy seems strange and exotic in today’s world, but in fact it is rather appropriate in the full context of national events.

  Below is a list of trends which show the 21st Century is going to look a lot more like the 19th Century than the 20th Century.

Big Labor

 Can we finally stop saying “Big Labor”? Last year labor union membership had shrunk to 11.8% of the total workforce and only 6.6% of the private sector.

  You have to go all the way back to 1900 to find such a small union footprint in the private sector.

The New Asylums

 50 years ago people were horrified that the mentally ill were being “warehoused” in mental institutions. So the government turned the mentally ill out to live in the street. Now we have come full circle and the mentally ill are being warehoused again, but this time in dangerous prisons.

 The most vulnerable in our society have been completely abandoned by our society.

It appears that the lessons in humanity that people learned 150 years ago have been forgotten.

The country’s three biggest jail systems-Cook County, in Illinois; Los Angeles County; and New York City-are on the front lines. With more than 11,000 prisoners under treatment on any given day, they represent by far the largest mental-health treatment facilities in the country. By comparison, the three largest state-run mental hospitals have a combined 4,000 beds.

  “In every city and state I have visited, the jails have become the de facto mental institutions,” says Esteban Gonzalez, president of the American Jail Association, an organization for jail employees…

  Two centuries ago, reformers were disturbed to find large numbers of the mentally ill in jails, paving the way for the development of state-run institutions.

  Those days have returned.

My father’s mother was raised in an extremely religious family. Her father, a minister in a Pentecostal church that I would best describe as Holy Roller, believed in demonic possession. Sadly, my Grandmother was stricken with a variety of physical maladies that left her constantly ill and often bedridden. Following the teachings of her upbringing, his mother dragged my father to one church after another, all in the hopes that someone could cure her. Taking the miracles of Jesus as literally true, she was certain that someone out there possessed the ability. This belief was so strong that she sometimes gave money to televangelists who promised to do the very same thing.

A couple weeks back I spotted a post on my meeting’s listserve, soliciting personal anecdotes from people of faith who have  disabilities.  I’ve long been willing to be vocal about having a chronic  illness.  This is partially to negate the still-potent stigma of  bipolar disorder, and partially to ensure that insurance companies cover  mental illness as they would any other medical condition needing  regular treatment.  Within a day, the editor contacted me back, eager to  inform me that he liked what I had written and that my story would be  published as part of a book he was compiling.  When released, it will be called Amazing Gifts: Stories of Faith, Disability and Inclusion.  The book will be published by the Alban Institute.

A year or so ago I wrote a post that referenced the Sleater-Kinney song “Sympathy”. I return to it here for a slightly different reason. Its poignant, profound lyrics are written from the perspective of a mother whose newborn son’s survival hangs in the balance. In her desperation and fear, she calls out to God.

In recent days, I have recognized yet again that some people crave surety and certainty. They believe in, and seem to need a definite answer phrased in absolute terms. Beyond the biological and even theological implications of this system is the reality. Rational sense alone has frequently been disregarded for stubborn need. Thought it may not be our role to pass judgment, lest we be judged in kind, we eagerly take it in any case. When we are not the best stewards of our own perspective, the nastiness of our ideological allegiance reinforces our separation.

Whether we’re even conscious of it, we need and desire a means of discernment.  We seek a measuring stick with which to compare our own individual perspectives with something close to objectivity.  We desire something firm and deeply grounded when the world around us is always changing.  Increasingly, Americans view science as the final and ultimate say.  To qualify my remarks, I don’t caustically dismiss scientific progress out of hand in favor of religious belief.  I do know that science is never static, and that it is a field which is constantly evolving as surely as are all living beings.  To place complete, unwavering faith in science is to overlook the continual process of human discovery.

The circular firing squad over the defeat of Martha Coakley and what this means for the Democratic Party and Health Care Reform got underway a couple days ago.  I’ve said my bit, and have nothing further to add, but I’d rather address the potential challenges facing reform aside from the loss of a seemingly filibuster-proof majority.  It is now absolutely imperative we push forward and bring a bill to President Obama’s desk.  Our backs may be against the wall, but perhaps it will take abject panic and fear to rouse our complacent, weak-kneed Democratic legislators towards the goal.  If it takes the shock and dismay of a humiliating defeat to break the logjam, then so be it.  I’m not concerned with speculating as to how we got here; I am instead consumed with what we learned from it and how we will use this tough lesson to think of others and their needs rather than ourselves.  

What I have noticed in my own struggles to obtain low-income health insurance is how class and race ensure that government subsidized plans are underfunded and often dysfunctional, but money (or the lack of it) seems to be the most powerful determinant of all.  What many have noted is that basic selfishness is what threatens to derail any efforts towards changing the existing system—namely that people who have always had sufficient coverage do not understand the limitations faced by those who do not.  We can call that privilege if we wish, but that term has always seemed accusatory to no good end to me, and my intent is not to chastise anyone but to make many aware of the challenges in front of us that never get much in the way of attention.  In my own life, I can say that I have now seen how the other half lives for the first time ever, and I noted that they live lives severely impeded by the tremendous limitations and senseless complications of the existing system.

I have been unemployed or at least severely underemployed for several months.  As a result, I had no choice but to file for government assistance.  When I was finally granted food stamps I signed up as well for a local DC funded health insurance plan.  What I have discovered in the process is that since the Recession hit, social service agencies in DC have been swamped by new applications for every existing option currently offered.  According to one worker with whom I spoke, claims have tripled since the bottom began to fall out of the economy.  The system was barely able to manage the number of filings in more stable times, and now it has in large part ground to a halt if not slowed to a trickle.  New claims are supposed to be processed in no more then 30 days from approval, and I was forced to make several time-consuming, additional calls to the proper department to even get the coverage activated.  Those without the time or without the persistence likely will be granted nothing at all and this simply should not happen.  

My great point is that without the infrastructure in place, it doesn’t matter how many people to whom we grant coverage.  Ensuring that everyone can get their teeth cleaned, fillings filled, broken bones set, flu-like symptoms properly treated, diabetes regulated, or depression adequately under control is the ultimate goal, but we must also be sure to build a sufficient number of clinics, medical centers, doctor’s offices, dental hygiene practices, well-stocked pharmacies and all the rest.  They must be built in proper proportion to need and since humankind has never been able to curtail its zeal for making money at the expense of the health of the financial system, we need to devise strategies to build these things for both good times and bad.

In DC, the low-income, government-funded system forces the poor and/or disabled to a handful of centers scattered across the District itself.  Visiting a private doctor or specialist is not an option, since coverage is only granted to those who use these designated centers.  Likewise, pharmacies and medication dispensation function under the same parameters.  Using Walgreens, CVS, Rite Aid, or other commercial medication fillers is not allowed under the plan.  Though there are a score of specific pharmacies which take the DC plan, in my case, there is only one pharmacy in the entire District that fills psychiatric medication, and for me it is a 35 minute trip, one-way via public transportation and then by foot.  The pharmacy itself is attached to a Mental Health services clinic which is the sole site whereby psychiatric care is provided for a city of roughly 600,000 people.

Without enough workers to process claims, grant coverage, manage medical records, or attend to even the most basic of needs the system is essentially worthless or at least incredibly inefficient.  Without enough revenue allocated by governments from taxation or other means, it doesn’t matter how snazzy or up-to-date is any system designed to speed up or modernize the system.  Window dressing is window dressing.  Without the money to properly stock a pharmacy, medications will be obtained on a priority system and as such, meds that are rarely prescribed or are very expensive will rarely be on hand when needed.  For example, one of my medications, Parnate, is an MAOI inhibitor.  Parnate is a very powerful anti-depressant that is infrequently prescribed because with it comes potentially dangerous, even deadly side effects if I do not take care to abstain from eating certain foods.  As you might expect, it is not one of the more common prescriptions, but it is essential to my lasting health and quality of life.  A commercial pharmacy usually has it in stock, or if it does not, it can be quickly ordered or is certainly in stock at some other store in the immediate area.  With the government-subsidized pharmacy I must use, if that particular drug is available at all it is due purely to chance and luck, and if it needs to be ordered, it may be a week or more before they have it in stock.      

Regarding visits with a GP, specialist, or other specific health practitioner, some clinics and centers accept walk-ins or schedule appointments within a reasonable time frame.  Some do not.  For those who need surgical procedures or more invasive treatment, one might be expected to wait months.  When I still lived in Alabama, there was approximately one Medicaid-accepting clinic for the entire state that performed the procedure, and as such when it came time for me to have a very routine, non-invasive treatment, I was booked four whole months in advance.  In more affluent, usually blue cities and states, the wait time is often less, but it can still be a bit on the lengthy side.  As for me, I found to my utter dismay that my coverage was terminated before the procedure could be even performed after the clinic filed and billed Medicaid for the cost of the preliminary screening.  Someone must have realized that to save cost I was not what they deemed a “high-priority” need and thus I could be safely removed from the rolls to save money in what was a system already in danger of being completely depleted of funds.    

An important distinction needs to be drawn here.  The DC-based coverage I have been talking about is different from Medicaid or, for that matter, Medicare.  This coverage augments or seeks to provide coverage to those who either have Medicaid/Medicare or cannot get approved for it.  This is why the rules, parameters, and hoops to jump through are more severe.  Medicaid usually allows a person to pursue more orthodox means of seeking treatment.  Though some medical practitioners do not accept it because it usually pays out less than a gold standard coverage plan through a private insurer, many do.  Again, money is a big factor at play.  If Medicaid were capable of paying out at a sufficient rate, everyone would take it.  If it wasn’t at times forced to pay out much later than a private carrier or even being forced to issue IOU’s when monetary shortfalls and partisan bickering delayed enactment of a satisfactory state budget, then it certainly would be on par with usually employer-based coverage.

Yet, it is very disingenuous at best for those who oppose health care reform to stubbornly dig in their heels and express haughty indignation that they are NOT going to have “the government” take away their right to choose their doctor.  The only way this would ever happen for most is if they lost their insurance altogether, lost all their personal savings, and lost the ability to come up with the money to see a well-compensated physician and/or specialist.  Their worst-case-scenarios and numerous reservations are true only for those living in abject poverty, or at or below the poverty line.  The wealthier among us have any number of lifelines, be they family, co-workers, friends, fellow members of a particular group or club, or other sufficient means.  Those at the bottom have none of this upon which to rely.  Friends, family, and others are just as impoverished and less fortunate as they are, and they have no choice but to take and use what they can get.  And taking what they can get means dealing with a system that is convoluted, needlessly complex, inconvenient at best, and regimented to such an authoritarian degree that even obtaining the minimum often is an exercise in debasement.

If ever we had a need for revolutionary reform and change, now would be it.  Decades after a declared War on Poverty, we still have many battles ahead of us.  We haven’t really given this matter anything more than perfunctory attention, and we haven’t really allocated resources of any significant means to this very pertinent cause.  Doing so would require us to understand exactly how fortunate we are to have been granted, by complete luck and chance, the socio-economic status of which we were born.  For some quirk of God, fate, or nature we do not get the right to choose our parents or to choose our upbringing.  But we do have the obligation to see to it that those for whom daily adversity is not an abstraction have the same rights that we frequently take for granted.  I am not seeking to lecture, nor to hector anyone, but rather to strongly emphasize that our continued success as a people, a party, and a movement demands that we seek to assist the poor and the less fortunate.  Our wallets, billfolds, and bank accounts couldn’t open fast enough to provide aid to suffering Haitians.  If only this were possible for our own poverty-stricken citizens, many of whom struggle through conditions not that dissimilar to those we now view through heart-wrenching news reports and graphic photographs.  After all, it might be you someday who faces the disquieting realization that our health care system is designed for the wealthy, by the wealthy, and in so doing realizes just how much you took it for granted.

A few years back my depression flared up again, and it became necessary for me to make the long-practiced, but always demoralizing trip to the hospital to regulate my medications and in so doing stabilize my illness. The hospital close to my apartment had no beds available, but the law indicates that those who require hospitalization for any reason must be taken somewhere, no matter how far away that may be. After waiting for several hours, an ambulance arrived for me and I ended at a psychiatric hospital that I eventually came to discover was very badly managed and severely understaffed. Daily existence was trying enough, particularly when in such an emotionally vulnerable state, but I reached my breaking point when it came down to separate into groups for discussion. Substance abusers headed in one direction, and psychiatric patients went in another.

Before that instant, I had no idea I was about to have a spiritual awakening. This setting would seem the least likely of all regarding spiritual insight. To be taught a lesson with application well beyond the immediate was something I recognize now I needed desperately. The most potent image that stuck with me most was that of sitting in a room with ailing people, many of whom were clothed in the barest of scrubs, some of whom did not have their own clothes to wear. The nominal leader began a rambling devotional which then moved unskillfully to a denunciation of the sins of humankind. It was not until well after it concluded that I realized the leader was not a staff member, but was a fellow patient. As this delusional prophet spread a message of hellfire and brimstone, I saw heads droop lower and lower to the ground, believing that God must be punishing them for having mental illness. There was a time, and not that long ago that those with psychiatric disorders were seen as being either possessed by demons or being cursed by the Devil.

It took an experience that viscerally jarring for me to get the point. At that precise moment I vowed that I would never stand for such a thing ever again. The God I believed in then and believe in now was a God of love and a cool healing touch. I regret to mention how uncomfortable I had been in the presence of so many souls whose poverty and crippling condition rendered them a truly pathetic sight. Now, my heart was filled with pity and concern, as well as anger at the man who had encouraged them to curse themselves for a condition which they did nothing to create themselves. The world is full of much ignorance and much misguided advice, but since that day I have vowed that those who attack the most vulnerable among us for whatever reason must be challenged and ultimately defeated. That I had allowed my own prejudice to judge unfairly and harshly these people who had taken me outside of my comfort zone I regret to this very day. They lacked the intellect and the privilege I took for granted regarding how to advocate for themselves and how to even form the words needed to aid the doctors assigned to treat their case.

The story also highlights the shortcomings of our supposedly world-class health care system. The hospital upon which I was a patient had clearly seen better days and much of its dysfunction was due to the fact that it had close to twice as many beds as it did staff to manage the load. I saw a psychiatrist for no more than five minutes per day, at which point I had barely enough time to describe my symptoms and have my medication regimen modified. Those who could afford to leave did so, and those whose insurance or lack thereof would not pay for something better were stuck there. As for me, I claimed a miraculous recovery to escape after having been there a mere three days. For many, however, three days was but a drop in the bucket. Psychiatric hospitals are often merely a way station for the severely ill to remain until the court rules whether they should be committed to a state-run institution. Once there, a patient lingers for several months, upon which he or she is turned back out into society. Yet, few only manage one tour of duty in this whole sordid process. The homeless or the desperately poor spend years in and out of hospitals with such a variance in quality of care that it is no wonder this revolving door is the rule, not the exception.

I recognize how lucky I have been, but I know also that my role is to stand up for those who cannot stand up for themselves. Though whatever means I can manage, the indelible impression left on me by this story and others I have experienced in the course of several hospitalizations have allowed me to recognize that I have an obligation to serve those with limitations that would otherwise leave them worse for wear.

Some are fond of stating that we are our brother’s keeper and our sister’s keeper, but what often gets obscured is the original context in which this quotation is found. It is in Genesis, shortly after the the world’s first homicide. Cain intends the phrase as a childish retort full of scorn, but the phrase has often been taken literally.

Then the LORD said to Cain, “Where is your brother Abel?” “I don’t know,” he replied. “Am I my brother’s keeper?” The LORD said, “What have you done? Listen! Your brother’s blood cries out to me from the ground.

It would be just as easy then as now to refuse to look out for the vulnerable ones among us. Christmas, promising goodwill to humankind just passed us, a New Year yet to come, it is easy to forget high-minded ideals once the halls are un-decked and the time comes to roll up sleeves again and dive into work. If we are really to do the season justice, it would be for us to recommit ourselves to the process of reaching beyond our own selfish preoccupations. That it took my own direct observation to take into account the completely needless shame and fear felt by fellow patients only renders me exactly like the throngs of Doubting Thomases with whom I associate regularly. It is this gift I wish I could impart to those who have opposed reforming our broken health care system. It is this experience, horrible though it is, that opened my eyes and I feel certain it would do the same for many others.

Blessed are the poor in spirit,

   for theirs is the kingdom of heaven.

   Blessed are those who mourn,

   for they will be comforted.

   Blessed are the meek,

   for they will inherit the earth.

   Blessed are those who hunger and thirst for righteousness,

   for they will be filled.

   Blessed are the merciful,

   for they will be shown mercy.