Wednesday, March 11, 2015

Mutliple Sclerosis: The Ugly Truth

Multiple Sclerosis: The Ugly Truth
By Marc Stecker-Wheelchair Kamikaze—March 7, 2015
(Warning: the following essay contains frank descriptions of the physical ravages that can result from Multiple Sclerosis, and may be disturbing to some readers. Those who are sensitive, or would simply rather not know, should stop reading now. Really.)
For much of the healthy public, the face of MS comes in the form of celebrities who suffer from the disease. At the current time, here in The States the most prominent MS representatives are probably Ann Romney (wife of presidential candidate Mitt Romney), Jack Osbourne, and Montel Williams. Mr. Williams in particular has become a full-time MS activist, bringing welcome publicity to Multiple Sclerosis as he chronicles his struggles to fight the disease. I have nothing but respect for anybody battling this heinous scourge, and I don’t mean to belittle anybody’s misfortune, but I often find myself wishing that the public could see much deeper into the horrors that MS can inflict, beyond the relatively robust Mrs. Romney, the newly diagnosed young Mr. Osbourne, and the charismatic Mr. Williams.
The following snippet of an Associated Press article on Mrs. Romney’s experiences dealing with MS is typical of how the mass media often portrays Multiple Sclerosis:
“The wife of Republican presidential nominee Mitt Romney said Wednesday that her love of horses helped her overcome her fear that Multiple Sclerosis would put her in a wheelchair.”
As frightening as the prospect of being put in a wheelchair may be to the general public, the above quote significantly downplays just how monstrously devastating the effects of Multiple Sclerosis can be. I applaud any publicity that shines light on the disease, and certainly, it takes courage for those in the public eye to speak openly about their illness, but the beast that is MS can do far worse than leave someone reliant on a wheelchair. This public face of MS most often provides only a faint glimmer into the hellish world of those more severely afflicted with Multiple Sclerosis, a reality that can shock even those suffering from lesser ravages of the disease.
As a truly distressing depiction of the dark side of MS, the plight of former Mouseketeer and teenybopper starlet Annette Funicello stands in stark contrast to the sanitized version of the disease that is most familiar to the general public. Mrs. Funicello has been decimated by Multiple Sclerosis, its wicked impact leaving this once vibrant woman — who several decades ago epitomized exuberant youth — trapped in a living nightmare, her body gnarled and fully frozen while her mind presumably remains intact. For those who can bear to watch, Canadian television’s CTV network recently produced a video profile of Annette Funicello’s current condition, and her loving husband’s never-ending struggle to find some treatment to help relieve her suffering (click here for part one, and here for part two). Be forewarned that the content of these videos may scare the living s$!& out of you. Please don’t watch if viewing the worst that MS can do might have deleterious effects on your own ability to deal with the disease.
The past two weeks have not been kind to quite a few of my MS friends. One dear woman, who is amongst the sweetest souls I’ve ever had the pleasure to know, recently lost the ability to swallow, a development that necessitated the surgical implantation of a feeding tube into her abdomen. She will never again experience the simple pleasure of eating. Another friend, an accomplished artist who uses MRI images to make compelling pieces of visual art, informed me via email that she is now for all intents and purposes a quadriplegic, and can no longer use her own hands and fingers to bring her creative visions to realization. Instead, she “choreographs” a helper, providing verbal instructions to an able-bodied person in an attempt to maintain her artistic output. The anguish came through loud and clear in the voice of a big hearted man who has seen the disease rip apart not only his body but family and fortune too, while he haltingly told me that he had lost the ability to hold himself upright in a seated position, and has suddenly been plagued with fecal incontinence.
Through my many years of actively taking part in online Multiple Sclerosis forums, I’ve borne virtual witness to the steady decline and ultimate demise of more patients than I can bear to recall. The pattern has become hauntingly familiar; the slowly dwindling chronicling of ever mounting indignities and disabilities, and then a silence speaking loudly of total incapacity and sometimes even death. Occasionally, a family member will kindly put up a post informing the deceased’s online friends of their passing, but more often than not the person merely vanishes into the ether. I daresay my own online activities have similarly diminished as my disease (which still defies definitive diagnosis) has advanced, hopefully not a harbinger of things to come.
This is the true face of MS, a face little seen by the public at large. Of course, many patients suffer a far milder course of the disease, but a significant number do not. As much good as celebrity MS ambassadors can do, I fear they don’t convey the true depravity of the illness, and may in fact serve to lull the public into a sense of complacency regarding Multiple Sclerosis. Almost always, mention of the condition is accompanied by assurances of astonishing medical breakthroughs, of researchers on the verge of finding a cure, of proclamations that now is the best time in history to be diagnosed with MS. What’s left unsaid is that forms of the disease remain completely untreatable, and the pharmaceutical remedies available to those that are treatable are hugely imperfect, at best. An actual cure remains a distant dream, as the vast majority of research dollars are directed at developing new and supposedly better ways of suppressing the aberrant immune response allegedly responsible for the devastating effects of MS, resulting in drugs that can improve the quality of life of relapsing remitting patients, while quite possibly doing nothing to stem the actual progression of their illness. These drugs do not a whit to cure the disease, even as they reap huge profits for the companies that manufacture them.
The medical research model that has evolved in the United States is quite simply broken, warped by the corrosive influence of blockbuster drugs generating fantastic profits. Over 75% of medical research done in the US is funded by the major pharmaceutical companies, all of which are publicly traded entities. As such, they are mandated by law to be beholden to their stockholders, not to the patients taking their products. The job of a drug company CEO is to constantly expand his company’s bottom line, by endeavoring to create an infinite stream of ever-increasing earnings. Thus, research dollars flow to projects most likely to result in huge profits, and these projects tend to follow the lead of previously successful ventures. Scientific researchers, in need of steady income, are of course drawn to projects that will receive ample funding, and so a dysfunctional cycle has developed, one in which good people simply doing their jobs perpetuate a system of medical research that has failed to cure any major disease in decades. As the stream of government research funds dries up, due to harsh economic times and shifting political philosophies, the situation becomes even more acute. As the saying goes, the road to hell is paved with good intentions.
Perhaps if the public was privy to the hideous reality of those most severely afflicted with MS, and was made to understand that such cases are not mere outliers, their revulsion would spur an outcry that might shatter the status quo. It’s not as if there are no funds available to fuel the research efforts needed to conquer horrendous illnesses. The US Air Force’s newest jet fighter, the F-22 Raptor, comes in at a cost of approximately $350 million per airplane. The F-22 is a wondrous piece of technology, invisible to radar and able to cruise at supersonic speeds. It was originally designed to fight an adversary that no longer exists, the Soviet Union. The Air Force has 187 of these fighters. Would our nation’s defense be significantly hampered if the Air Force possessed only 184 of them? The roughly billion dollars saved could certainly fund a concerted national research effort that might rid mankind forever of diseases whose cost in human misery is incalculable. It’s simply a matter of priorities, and in the language of World War II GIs, the priorities of our society are FUBAR (F%^&%#d Up Beyond All Recognition).
I’m constantly amazed at the courage, bravery, and fortitude displayed by the MS patients I’ve come to know, whose grit and determination serve to gird my own. If only our national zeitgeist would take its cue from the steadfast heroism of those afflicted with terrible diseases and those who care for and love them, and raise an outcry demanding that our nation flex its immense intellectual and financial muscle to find ways to better human life, rather invent technological marvels intended to destroy it. The generals could still have their high-tech toys, only a wee bit fewer of them. Perhaps if MS and other horrendous diseases were portrayed in their full horror, and not in the sanitized versions commonly depicted by our mass media, a change in priorities might be possible. There is a vast Holocaust happening just beyond the eyes of the public, a Holocaust that will likely continue until that public is forced to look upon the contorted faces of the afflicted, and is made to understand such a fate could very well be their own. As John Donne wrote centuries ago, “Ask not for whom the bell tolls, it tolls for thee…”
This article was originally published on Marc’s website on 10/15/12 and is being featured on with his permission. We are sorry to note that Annette Funicello died on April 8, 2013, after this article was written.
Profile photo of Marc Stecker-Wheelchair Kamikaze
Marc lives in New York City with his lovely & wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, he now requires a wheelchair to get around the city. Marc likes to drive his wheelchair at full speed, thus the moniker "Wheelchair Kamikaze."

Thursday, March 5, 2015

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Tuesday, March 3, 2015

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Tuesday, February 17, 2015


If the recent recession taught us anything it is that nothing is for certain. One of the most disturbing aspects of the recession was the amount of individuals who found themselves out of work for prolonged periods of time despite the fact that they were college graduates who held a marketable degree. The truth of the matter is that there are a lot of things in addition to a college education that will help you find success in life. There is proof of this in the fact that there are many people, very successful, wealthy people in this world who did not attend or finish college or even attempt online college or an online degree and yet were still able to achieve their life goals. You do not necessarily need a phd degree in order to realize your dreams. Here is a rundown of some of the rich and famous who did not go to college or did not finish their college degree.


Walt Disney

This king of cartoons, is another super successful person who never received a high school diploma. In fact Disney despised high school so much that he wrote a letter to his high school principal outlining just how much he hated it. Disney’s lack of formal education did not stop the innovative creative from going on to realize his animation dreams.

Mark Zuckerberg

The man who single handedly changed social interaction forever, did not finish college. Zuckerberg, after borrowing money from PayPal founder Pete Thiel, launched the social networking site which quickly took over the world. Not only did Facebook create an entirely new way to interact with the world, but it also provided one of the most sought after advertising venues around. Even Microsoft took notice in 2008 when they paid $243 million dollars for a 1.6% share. The website is believed to be worth about $15 billion dollars.

Steven Spielberg

Probably known as one of the best movie directors of all time, Spielberg dropped out of California State University in hopes of getting into film school, where he was also denied admission. Although he had a rocky start, Spielberg eventually went on to found DreamWorks Movie Studios which has produced some of the biggest grossing movies of all time. He is estimated to be worth $3 billion dollars.

John D. Rockefeller

His very name is synonymous with wealth and success. This oil mogul never even completed high school, but you never could have known it by the clever way he managed his money and his monster business, Standard Oil. The company was so rapidly successful that the United States had to step in and literally break it up so that it did not begin to monopolize the oil industry. Rockefeller may have had humble beginnings, but he is still believed to be one of the richest men in history.

Rachel Ray

Rachel Ray may be one of the most famous chef’s on television today, but you would never guess that she has had no formal culinary training. Ray never attended college or cooking school of any kind. How did she get her start? The chatty chef started her culinary career by teaching cooling classes at Cowen and Lobel. The gourmet market in Albany catered to high end clientele and the classes Ray taught customers how to create delicious meals in thirty minutes or less. Today Ray is can not only cook the bacon but she certainly brings it home, at about the sum of $19 million a year.

Bill Gates

Probably one of the most prolific college dropouts of all time, Bill Gates was for many years one of the richest humans on earth, until, through his philanthropy he knocked himself out of that title by literally giving away money. Gates dropped out of Harvard University to create his partnership with Paul Allen. This historic partnership would later become Microsoft. Although Gates did not graduate from college, he does hold a degree. In 2007 Harvard awarded him an honorary doctorate degree. He is believed to be worth about $40 billion dollars.

Henry Ford

Not only did Henry Ford not go to college, he did not even finish high school! What could have been seen as a huge disadvantage did not seem to faze this innovative genius. Ford went on to become the founder of Ford Motors, invent the assembly line. It has been said that Henry Ford was one of the most influential and innovative individuals of the entire 20th century. Through use of his assembly line, Ford was able to manufacture and sell cars at the lowest prices, while still making the largest profits in the industry because his sales volume continued to climb year after year.

Michael Dell

You may think that perhaps actors and entrepreneurs can make it without a college degree, but if you want to make it in a field like technology you have no choice but to earn your degree. Well someone forgot to tell Michael Dell CEO of Dell computers. Dell dropped out of college at the tender age of nineteen. Before dropping out of college, though, he began his computer company in his dorm room. As of 2009 he was estimated to be worth about $12.3 billion dollars.

Halle Berry

Halle Berry is among the rich and famous who never even attended college. Berry opted rather after high school to move to Chicago and launch herself straight into her Oscar Award winning acting career. Not only has Halle Berry found success in her move roles, however, she is also a spokesperson for Revlon cosmetics.

Mary Kay Ash

Mary Kay Ash is one of the most successful female entrepreneurs that ever spun a tube of lipstick. Founder of the multi-million dollar company, Mary Kay, her name is synonymous with beauty and success. One of the things that helped Mary Kay rocket her cosmetic business into the financial stratosphere was her belief in spreading the success of her company out through her clients. The Mary Kay corporation is built upon the concept of client becomes partners and retailers. Mary Kay never finished her college degree opting rather to get married and then be successful anyway.