Wednesday, September 22, 2010

The Bars Will All Come Down

Those who know me are aware of the manual patient lift bar above my bed. When I was strong enough to reach the bar (think old western dinner triangle),I pulled myself up and carefully swung my legs off the side of the bed. Either my walker or wheelchair was right next to me. Once I plopped myself in the seat or gained my balance with the walker arms, I was off to start the day. From bed to bathroom and on to the kitchen took about an hour and a half if I skipped the shower. It was a symbol of how far my disability from Multiple Sclerosis had progressed. Part of my night time ritual is waking to Tilley’s bark in response to my husband’s thunderous snore. The invention of sleeping pills would let me remain comatose through the whole event, but I couldn’t drug the animals. Once they are able to pull me back to consciousness, I shake Rick and say, ”Honey, you’re snoring!” I get a quick apology, a kiss on the forehead and he rolls over. I know I have about ten minutes before the freight train will rumble through the room again. After everyone settles down once more for the remainder of the night, I would catch a glimpse of the hallway light as it shined on the corner of my triangle”. At those times it was a comfort for me to know that I was still capable of going to the bathroom by myself; allowing me to maintain a little dignity and independence. In due time it became useless to me other than a place for Rick to hang my blouses during the day. A new relapse prevented me from raising my arms high enough to hold onto the bar at all. After eight weeks of in home care and physical therapy I once again had a feeling of self confidence when I had the strength to pull myself up.

That was a part of my normal,everyday life. I can’t pin point when it happened. There are chunks of time from the past eight years or so that remain hazy in my memory. Multiple Sclerosis is corrosive and soul destroying. It is no respecter of persons and demonstrates no mercy. We have an arsenal of ineffective weapons to lull us into a false sense of security. If we wait long enough, adhere to the regimen of drug therapy, alternative treatments and obey every command of our neurologists, we are secure in the assurance that we are doing everything humanly possible to win this impossible war. Something buried exceedingly deep in my soul, would not allow me to resign myself into accepting what I had been brain washed into believing : I would forever live this half life that was eroding away at my family and my own feelings of self worth. Depression was not part of my life, it encompassed the whole of it. I was once a respected individual for my abilities, talents and willingness to take on any challenge. Family friends and my community knew that if I committed myself to a project or task, they could consider it a “fait accompli”. Multi-tasking or dovetailing my projects or chores was part of who I was. Self-aggrandizing defines a person with poor self esteem issues. I have little tolerance for self indulgence, it impedes personal progression. I was not strong enough to face whatever time allotted me with MS as my co-pilot.

I like many others allowed MS and those delegated to provide relief from it, to convince me that my quality of life was the most I could aspire to and should be thankful for. The light at the end of the tunnel began as just a flicker when I learned about CCSVI and the possibility that it could be treated. As any innovation in its infancy, there are many roadblocks and unforeseen obstacles. Some of them are of a technical nature that time, money and earnest research will refine and perfect. Those of us who have pinned all our dreams on this procedure fall short on all three counts. The reasons for this dilemma are the other roadblocks; greed, position, ego, narcissism, and the unwillingness for the powers that be to stand for something they already know is right. To put their reputation on the line for a cause that could cost them financially, professionally and personally requires integrity. It means they are willing to admit they are fallible and can make mistakes. They would have to recognize their complicity with a pharmaceutical nightmare which nearly dominates our society. Some brave individual doctors, administrators and politicians have done so. They are utterly in the spotlight of both adoration and cynicism.

Their professional futures depend on the outcome of this war between good and evil. This entire revolution began in obscurity from a relatively unknown doctor and fueled by individuals branded as fanatical, desperate and chronically ill people in pain and great suffering. Mainstream media and avaricious drug companies and organizations have convinced the uninitiated that Dr. Zamboni is nothing more than a contemporary cult leader and his followers are fanning his delusions and criminal assertions with internet mass hysteria. When more ordinary measures failed to extinguish the flames of reason and truth, more insidious, deceitful and bold measures are being utilized to once and for all end the madness we have all been driven to exhibit.

I firmly believe that a virtual treasure trove of evidence lending credibility to the venous connection to Multiple Sclerosis has been intentionally concealed for some time. That it will come to light is now inevitable. Then it may be everlastingly too late to employ damage control.
This morning I woke up for the first time without staring at the bar that has been over my head for several years. It was the last piece of medical assistance equipment I have collected during my journey through MS to be relegated to the storage room. Physically I haven’t needed it for almost four months. Until I gained the courage to believe that this will be my life for as long as I am still on this earth, I left it where it stood as a symbol of hope. That hope has been replaced by belief in my reality. My power chair, scooter, ramps, walkers, and many other adaptive devices have been put up for sale. I hope to find the best place to donate the proceeds to those who know best how to promote the research needed to end the unsuccessful procedures due to lack of expertise and education. When all interventional radiologists have been properly trained and exercised in this relatively unexplored territory of medical ingenuity, I firmly believe that the groping in the dark will no longer be necessary. Overly financially ambitious neurologists, interventional radiologists and vascular surgeons will not reap unreasonable rewards for their efforts. The cost will be contained by the ample supply and well honed abilities of the best doctors available. Lives are being destroyed now due to the delaying tactics of Multiple Sclerosis Societies, bogus medical “support” groups and insatiable drug companies. The time is coming when they will be unable to hide behind their political and personal agendas. Those lives will be vindicated and recompense should be forthcoming.
All like minded people must do all they can to bring an end to the devastation and ruin caused by the symptoms and damage of Multiple Sclerosis. Those who maintain that they are protecting us from harm must be brought to account for their serious and amoral breach in their professional conduct.

1 comment:

Anonymous said...

thank you for this post, I really needed to read your wonderful success story. I've been dealing with such overwhelming symptoms, but your posts bring me such hope.
My Dr. found LJV, RJV, and azygous vein stenosis, now we're waiting for IRB approval. I pray that we will ALL be free from this disease.
Thank you again,
God bless!!