"Shit Happens!"

One of my favorite movies is Forest Gump. I love the scene where he is running across the United States, stepped in dog poop and said, "Shit Happens!" I don't believe that every incident in our lives has some deep cosmic significance, or religious connotation attached. Some things don't really matter; the type of house we live in, the hobbies we pursue, or the clothes we wear. To freely make our own choices from within the options at hand is the right and privilege of every man and woman; or should be. A person who is honest and forthright has my respect, the rest is eye candy.

One of the most baffling questions for those of us interested in MS/CCSVI is why is there such a great disparity in recovery among those of us who have had the angioplasty procedure? There is no simple answer, although I have some very clear cut opinions. I have addressed that topic many times. What I find interesting is why most of the members of the Liberati Club who have had superior results choose to remain less visible . I know some of them and speak to them on a regular basis.

A friend of mine from Canada has given me the most insight into what is happening in her country, and to some extent ,my own. She is not a Facebook fan, nor does she care for the internet in general. Her mother -in law, however dabbles a bit in everything, much like me. She saw my videos on Youtube and tried to contact me last fall. Personally , I thought I was one of the easiest people in the world to get in touch with if MS was part of the equation. Stupid me; I didn't realize that part of being an online personality involved a gigantic make over. I thought a "username" sounded like fun, but other than that you use your real name , bio and history. It still fascinates me how people can have a dozen different names and personas online. In any case when she finally caught up with me on Facebook, it was the beginning of a new journey for me and for my soon to be newest CCSVI buddy. Other than the fact that she is young enough to be my little sister, our MS symptoms and history parallel each other closely. I had one advantage she needed: a country where she did not have to fight to be treated. Her neurologist , if you know any of them in Toronto, was not well versed in the venous connection to MS. He refused to write a prescription for any tests to determine whether or not she had any venous issues to be concerned about. I offered to speak with him on the phone. It did not go well. In fact the conversation began to disintegrate somewhere between "Hello" and "Yes, I have had the venoplasty procedure."

Within a week my new friend came to the US and had the procedure done. Everything I had done, she did also. In addition she got a nifty little vein graft. I wasn't jealous, just fascinated. She had to stay here for almost two weeks before all concerned felt comfortable sending her back to Toronto where we feared she would have no follow up. Our fears were well grounded as she did need to come back briefly. It was great to see her again and doing so well. Her improvements were impressive. Her left hand had been curled into a ball before the procedure. Physical therapy was one of the perks she got by "coming to America." She was soon out of her wheelchair, able to care for her baby and she loved the ability to smell things again. Her peripheral vision is normal, L'Hermittes, spasticity, cold feet, numb legs and face tremors are all gone. What's not to be happy and excited about?

After dealing with progressive MS with all its hideous symptoms and side effects she was able to rebuild muscle mass, adopt a much healthier lifestyle and generally have it made. That was until two months ago when she tried to commit suicide. I am happy to report that she was unsuccessful. With her new "normal" life came the "side effects" of Liberation for a Canadian. Her husband lost his job. The details are unimportant other than to say he worked within the healthcare system. The friends she had before her procedure were mostly other members of the MSSC. Not an outgoing or talkative type, she withdrew from her associations and stayed home. A few months ago, her husband told her he wanted a divorce. Apparently he adapted well to his caregiver role, but recovery was more than he bargained for. Megahn began to find herself and wanted to take control of her life; something she had been physically unable to do in the past. There is much about her situation I am not free to talk about. She did ask that I write this for her because she feels that her attempt to make others aware of the reason for her transformation had much to do with the current state of affairs. Because of her legal disability and the "assistance" of her old neurologist, she lost custody of her baby, even though she had a good job as a school teacher and quite capable of caring for herself and her daughter.
Things are getting better her now. After much hard work, some fundraising from real friends who care about her with or without MS and many prayers, she has her daughter back. Her and her husband are in counseling and physically she is doing wonderfully.
With much restraint and tact on my part, I will leave some of my personal feelings aside. That she was treated shamefully by her MS support system is a gross understatement.
For her and her little family, it doesn't matter what the bigger picture is: shit happens. That it happens daily in Canada is no brag, just fact.

Wake up Canada! Your indifference is destroying the quality of life for some of your best citizens!

This is in response to Canada's continuing failure to address their citizens with CCSVI, irrespective of what other conditions they may have. Once again, we have a crisis for one of our own who needs treatment , yet is refused solely on his past diagnosis of Multiple Sclerosis.
Many of us have been so over stimulated by the constant barrage of movies, documentaries, and slanted news coverage of abhorrent behavior that we dismiss it when it becomes personal. PwMS are commonly told that many of their complaints or symptoms are in their heads. Most of us can relate to that. In addition, the hypoxia we suffer can cause paranoia, depression and other psychological issues. These are transient situations but they brand us sometimes as being unstable. Since we are aware of this, we may over compensate by becoming overly trusting and dismissive of much of the negative in other people. Most children, especially in my generation were taught to respect authority and defer to professionals, particularly physicians. It is in our nature to be supportive of people in situations in which we can relate. One of the reasons that social networking for common illnesses has been so successful is because we can relate to their pain, limitations and despair. How many times have we heard someone say that no one can understand Multiple Sclerosis unless they have the condition? You may have said so or at least had those thoughts yourself.

What happened when you were first diagnosed with MS? Typically you would have searched for every scrap of information about it. With the advent of the Internet the amount of reading material was overwhelming. For the newly diagnosed there
is a trilogy of hope they simply cannot resist. The number one weapon is the neurologist. We hung on his or her every word as a thirsty man in a desert who has found an oasis. Enter the Multiple Sclerosis Societies. Smiling and cheerful with a plethora of information and offers of assistance we quickly added them to our arsenal of weapons against this MonSter. Lastly, our salvation came in a handsomely designed box or brochure with pictures of people playing Frisbee on the beach or flying a kite. Along with an application for your drug of choice was information written in microscopic print with medical verbiage and characters that the average individual could not decipher. Avonex, Rebif, betaseron, Copaxone, Tysabri ... Exotic sounding medications to protect us from the damage that MS was sure to bring. Never mind that the cost was exorbitant. You get what you pay for, right? The FDA would never allow people to take these injections and fork over the price of a house every year unless they were miraculous life saving drugs. They are our ever watchful eye to protect us and shield us from scams, snake oil treatments and fraudulent entrepreneurs.

After decades of building fortunes on the ever increasing numbers of PwMS, a theory that predates the autoimmune sham by maybe 200 years rears its ugly head. An obscure vascular surgeon from Italy, himself the victim of a neurological condition rises above the radar and a beacon of light is seen around the world and sends the world of MS into a frenzy. Thousands of people with varying degrees of disability, disillusioned by the drugs and treatments that have failed every promise decide to reach out for yet another ray of hope. The premise of the vascular connection to Multiple Sclerosis was so foreign to the accepted causal factors that even our own were largely scoffed at as just another in a long line of wasteful treatments and dubious assertions. In the beginning, we couldn't even convince our own friends that Chronic Cerebro-Spinal Venous Insufficiency could be at the root of our condition. The "Trusted Trilogy" of all MS patients worked diligently to feed their doubts and fears. They have been largely successful; but perhaps not enough. After all, desperate ,cognitively impaired, and compliant patients were beginning to network , research and support each other in an attempt to secure the angioplasty or venoplasty procedure. Some began to believe that this might give them the thus far elusive second chance they had been seeking. Were we not promised by our neuros and "support" organizations that a "cure" was right around the corner? If only we could heighten awareness of our plight by massive fund raising, it would just be a matter of time and our dreams and hard work would come to fruition.

Well the fairy tale is over folks and we know we have been lied to and duped for decades. The real purpose was never to treat us with viable options for a better quality of life. It was all about money, career opportunities and building reputations and fortunes. We aren't talking about small accomplishments here. Neurologists by the very nature of their reputations are accustomed to residing at the top of the food chain. They are not taking this well as their impeccable reputations, medical practices and lifetime of dedication to the poor and pathetic people unfortunate enough to own this disease are at stake. The only way to assure the $150,000.00 + that it takes to care for one MS patient per year is not going to disappear is to stop the spread of the very notion of CCSVI, which for the opposition has become like a cancer they must irradiate. They will not be squeamish in their pursuit of this goal. If you are scared by this truth, you are wise. It is very real. If what I have gone through since my decision to remain as an advocate for myself and others is any example, there is no doubt in my mind, they will do whatever it takes to make all of this disappear and be filed away in the "phew that was close" file. We lose one life everyday to the complications of MS. That is an estimate for Canada alone. Remember the cute little button that said, "MS may not kill me, but it can make me wish I was dead"? I used to wear one, until I nearly died in hospital myself. Without the procedure I would not be here to write this, and if by some miracle I were still alive, I still would have been unable to complete the first paragraph of this post. I personally have nothing to lose since I have considered myself living on borrowed time for about two years. Every day is a gift. We can't let them take any more of these gifts away from us. They are our rights and not theirs to play with as they see fit.