By: V Capaldi
I will never forget the tremendous amount of gratitude I felt when I was diagnosed with Multiple Sclerosis to walk out of my doc's office & instantly be met by someone from the NMSS. This felt like a gift from heaven during one of the worst times in my life.
For years I knew I was fortunate to have met the NMSS during the very beginning stages of my journey with Multiple Sclerosis (MS) in the 80's. Having community has always been the key to my wonderful life & once again my association with the NMSS offered this early on.
By the time I was living with MS for a decade this gal proudly sat on the Board of Directors of the Delaware Chapter of the NMSS. Words cannot express the great group of folks who worked tirelessly at the society to make the world a better place for all living with MS.
Over the years I watched programs grow that supported families, wellness across many levels & research.
I also watched more & more money coming from drug manufacturers into the NMSS which the society appeared to accept freely and without caution.
The once important MS magazine now becoming filled with pages of Big Pharm ads and less information were the monthly reality.
Event after event sponsored by the latest drug company a yearly reality.
During the 1st decade of 2000 I was fighting for my life & right to live a life outside of an institution or homeless.
MS had taken my body, money, close relationships & marriages. For the 1st time I realized the MS society had nothing to help me during my biggest time of need since diagnosis. A time most of us face when living with this horrific disease. I had exhausted the NMSS resources & this realization scared me as someone living with MS & as a member of the BOD's who believed our hard work had offered a better outcome for those suffering yet it fell so short.
Taking matters into my own hands & stepping outside the NMSS box was my only choice & honestly proved to be the foundation of my miracle life.
Thankful for Dr. Google & the Internet I was able to navigate a miracle life with MS by accessing information toward an outcome of wellness. The harsh truth is the foundation of my miracle life was not found in traditional health care or offered in any way by the NMSS.
Amazing the power of 1 to figure this out & yet the society still to this day has not. REALLY???
The wellness & management of disease I use for my miracle life is accessible to everyone & basically free yet not published anywhere by the NMSS.
It has everything to do with how you live your life.
Every attempt by PaleoBOSS Lady to reach out to the NMSS in an effort to share my story has fallen on deaf ears. Attempt after attempt they want nothing to do with the knowledge of my miracle outcome.
The beauty of technology is the numbers of healers just like me are getting loud & proud. Many of us healing due to Google using ways outside of Big Pharm and healthcare as we know it. These actions will eventually hurt the current power structure just like the real food movement is effecting McDonald's. As consumers say enough the dollars will have a new narrative and Big Pharm will not be the only power..
Last year I made the decision that I would no longer support the NMSS with my time & dollars.
It does not take a rocket scientist to figure out the NMSS is so dependent on $$$ from big pharm it clearly cannot figure out how to function without it.
My answer to the NMSS: Drastic times call for drastic measures. A huge reorganization is needed with a lens that supports those suffering without influence from big business of any kind. Clearly you are in way over your head as you ignore those of us healing beyond any drugs ever claimed to offer. We are kicking MS to the curb every day & you ignore us, the science and our needs.
In addition the NMSS has yet to fund works by Dr. Terry Wahls and many others whose efforts clearly are having a positive healing effect on the outcome of those suffering. Worldwide many of us have ditched the drugs & for the 1st time in our lives are walking, talking, living pain free & yet the NMSS keeps our stories quiet.
I apologize to all my brothers and sisters who walk, fund-raise and believe their efforts will make a difference by supporting the NMSS, but this gal disagrees. I believe the best use of my money is to continue to heal my self & share it with the world.
Until the NMSS society can wean themselves off the Big Pharm nipple they will remain unable to help any of us living with MS no matter what we want to believe. I mean no disrespect to those whose efforts are coming from the place of goodness the NMSS was founded, but the business of the NMSS is unable to create real, lasting, sustainable change in it's current form.
I have to say these lessons have pained me to learn and participate in at any level. My soul & entire person believes organizations like this begin based on need with a heartfelt resolution to create change. However it is hard when the "mother ship" gets so big it's focus is to sustain rather than create change. The NMSS is big business & has nothing to do with ending MS or putting itself out of business.
The good news is I believe the NMSS is living on borrowed time and they know it. Time continues to show their is a way to live with MS that does not cost you a life savings, your ability to care for yourself, your relationships or self esteem. In fact the only requirement is to love yourself.
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