Monday, December 20, 2010

Take Time for the Good Stuff and Get Busy!

This is a special time for me and my family. I believe that regardless of our religious or political views and practices that what most of us call the holiday season is a time of reflection and thanksgiving. If you are reading this, you are literate. If you have a roof over your head, you are not homeless and at the mercy of the elements. If you ate today, you have not gone hungry. These factors alone make you part of a minority group in the world today. If you enjoy good health then you know that again you have a prized possession. Maybe you have a fine reputation, career or favored place in society. Maybe you live in a free country where you can say what you feel without fear of recrimination. Still others have a lifestyle or pursuits that bring them satisfaction. Another person might wish for more. I have had these things and more in my lifetime. In addition, I have a companion who has shared over 35 years of my life with me. Together we have six children, 15 grandchildren with a new one on the way. I am 58 years old, yet my father is still here and has his knowledge, memories and personality are intact at 86 years of age. All women my age should be so fortunate.

Yesterday I had the privilege of watching and hearing my grandchildren play the violin and sing for the Christmas program at church. Several years ago I wondered if my oldest grandson would ever play the violin without the screeches and missed notes. Today there were tears in my eyes due in part to a beautiful duet he performed with a young lady who played the viola, and also due to the memory of all the missed concerts and disappointments when I was too ill to attend.
I am an average woman with nothing to distinguish me from anybody else except those whose lives in which I play a role. On the other hand, I have found myself in extraordinary circumstances, most of which I won’t attempt to regale you with in this venue. Multiple Sclerosis makes me part of an exclusive club that virtually no person wants to join. The perks are few, the dues are quite expensive. Our agenda is varied, but our goal is absolute. There is no recruitment program yet our numbers grow every day. Before days’ end there will regretfully be several newcomers. They will be accepted tearfully with open arms. It will take time for them learn the rules, and adjust to the more negative aspects of our exclusivity. Outsiders have little understanding or knowledge about the disease that binds us together. We have a large booster club who support and sustain us. Some stay for the long term, others drop by the way side quickly. The membership there changes often and we have to outsource some of our detail support. For 40 years we have had family, friends, doctors, hospitals, MS support groups and a wide variety of peripheral helping hands. Many of us have been witness to a plethora of treatment options with variable degrees of success. Most of them offer some temporary relief for a small variety but not all symptoms that gradually siphons the energy, independence and spirit from a high percentage within our ranks.

Recent events have shaken the firmly entrenched belief that there is no real hope for us other than expensive drug therapies that thus far have been overwhelming failures. Neurologists, drug companies and pseudo support organizations, groups and very recently websites have lined their pockets with our money and suffering. Dr. Zamboni brought to light a far more plausible theory in the causal factors of MS. In addition, he sweetened the coffers with a minalmally invasive, drug free treatment that has shown not only great potential, but superior results. Although the venous connection to MS was postulated decades ago, the treatment is still in its infancy. Old habits and greed are difficult to overcome. The two critical pieces of the puzzle was technology advanced enough to detect CCSVI and the ability to expose the cover up by pharmaceutical companies and other benefactors who refused to accept the financial devastation to their bottom line. It is my fervent desire that they will someday be held accountable for their deceit and justice given satisfaction for the tremendous loss of life and prosperity for which they are accountable. Restitution is not fully possible yet should be required as much as is feasible.
Despite the reality of our situation as it stands today, we can’t lose sight of all we do have to be thankful for and look forward to a far brighter future for members of our community. Our newest members will reap the benefits of our efforts today. There have been casualties, sacrifices and disappointments in our quest, but history has shown repeatedly that where much is given, much is required in return. Nature abhors a vacuum. Either we forge ahead, or regression will be the certain consequence. Change is inevitable and stagnation is not an option. Now that some of us have been lifted from the abyss that our condition brings we can’t walk away and let the rest of us continue to spiral down in the vortex.

One of my daughters, her husband and their children are leaving in a few days for Christmas with her in laws. I do have to share them once in awhile. We exchanged gifts early because they will not be here with the rest of us Christmas Day. My little family has grown to 27.5 members. None of us own a home large enough for a tribe. A few months ago, I got a new laptop and so was able to give my two year laptop to my oldest grandson. New to him, he was excited and wanted everyone to know about it and share in his good fortune. New to me is my “old” life. I’m excited and want everyone to see and share in my good fortune. If I am overly exuberant, forgive me for I am not an introvert. I also am not usually given to self promotion. However, as I have described earlier, I am not the sole member of this club and my initiation was quite tumultuous. Along the way I have heard more stories of suffering, pain and decline in life quality than I could have ever expected as a Family Counselor. Perhaps I’m too tenderhearted for that profession, but my options were limited and a scholarship for under water basket weaving or female mud wrestling were unavailable at the time. In all due sincerity, we have become as a winter bonfire of energy, dedication and purpose. The last torch will be ignited; there will be no hiding the truth from either friend or foe. In the process we may find that we have been a catalyst for needed change within the medical community and patient advocacy as well.

This is a new beginning. Take time for those things that bring you joy at this time of year. Focus your efforts on sharing the best within you to those you love. Let’s be supportive of our cyber family as well so that we can all reach the prime goal we share: a better quality of life for all of us suffering the devastating effects of Multiple Sclerosis. Perhaps we can shine some of this light on the ignorance associated with those who will not capitulate or bend to accommodate us as well.
Post a Comment