Monday, August 23, 2010

Different Again, and ever so thankful.

There's no place in the world more majestic than the Appalachian Mountains in West Virginia. Soon they'll be on fire with the color of autumn. I would visit my grandparents there whenever I could. My grandfather would take me shopping with him and my grandmother on Saturday mornings. There was an old lady who always sat in front of the store smoking a corncob pipe. I thought she was fascinating. Most people did not. My grandmother would steer me away and tell not to bother her, she was different. Years later I found out that she suffered from cerebral palsy. No matter, the important thing was that she was different.

I have learned many things about what being different really means. As a military brat, I was different. When my Dad retired and I had no "hometown" like the other kids,I was different. Having a large family was one of my goals. During the 70's that made me different. Gaining an enormous amount of weight and developing gestational diabetes made me different. Rick and I had miscarriage after miscarriage which made us different. So did having six children.

Each time I found someone else who had the same differences I did, I found my comfort zone. For as long as we were in the military, I would have to find new and "different" friends. I lost enough weight that I was considered skinny. Yes, I needed a new set of skinny friends. My rather reubenesque friends didn't think my "yo fat Mama jokes" were so funny anymore because now I was different.

During all this time, I learned to adapt to a great diversity of humanity. As a globe trotting military daughter, wife, and in my own right, I was fortunate to be exposed to many wonderful people. They were full of life with different customs, religions and personalities.

Just when my life seemed to have stability and my family was flourishing, I learned I had Multiple Sclerosis. The first couple of years I tried to pretend the cognition issues, and visual problems would clear up on their own. As time marched on, it was apparent to everyone that I was different. This time would be permanent. My disability would wear me down, I would give in to using a cane. IV Steroids became my new best friend. Several months went by and I was practically symptom free. Eventually those steroids severely damaged the pancreas already diseased from Diabetes. Avonnex and Copaxone were jokes. They did nothing but cause me to suffer side effects from hell. Relapses were longer and remissions became shorter. By the time I was re-diagnosed as Secondary Progressive, I honestly wished that I would die and rest in peace. I was tortured by the pain, confusion , disability and loss of my place as the matriarch of my family. I cried when people couldn't understand my words. I forgot how to type, and had to quit teaching and counseling. During all of this, I had one place of support. There were people like me on a website for MS research. In order to have these people to talk to, I had to chart my symptoms and continuously update my weight, medications, symptoms and treatments. I thought that would be a good idea to help each other learn from other PwMS. It took a few months before I realized that this wasn’t just a nice place for support, its main focus is for research. Back then, I hardly knew who I was, let alone understand their “openness and transparency” policy. This research is sold to whoever wants to buy it, I suppose. It’s a business, like any to make money. If you leave the website permanently, you can have your charts and so forth deleted, but nothing posted in the open forum. I was given to retain continuity as the reason. But not until I was gone and could not change it. This has happened many , many times. There are many who are able to use the forum information also. It doesn’t appear to bother anyone, yet. Regardless of who was making money out me, it was helping other people like me to learn to deal with the many faces of Multiple Sclerosis. After three years of selling the website, literally by word of mouth, shirts, pens and business cards and more recently videos. My next video will be somewhat different. After I foolishly asked people in my pre and post procedure videos to go there for reliable information about CCSVI, they came only to find the information I promised, was buried beneath mountains of other posts. I mentioned this to the administration but was pretty much ignored. We were to report nasty or threatening private messages. The moderator mentions this often. He just never did anything about them. I would not have done it in the first place if they had not offered to highlighted a thread dedicated to CCSVI that anyone could find. I didn’t have to be the author. I mentioned many times, that constant repetition of the same information was counter productive and unfair to those of us who wanted to do the right thing. They finally did highlight the thread, only to remove it until some of the members complained about it.
Once again I am different. I spent months researching CCSVI last year. There was little support at the time from anywhere. Suddenly the internet exploded with everything Zamboni, CCSVI and the Multiple Sclerosis societies. I was excited, amazed and motivated. I tried to share this with people I had grown to care about like a family. Everyone was skeptical at first. I had my own doubts. Then I had my first procedure and there were others who were on their own journey to liberation. Still there was incessant fighting over the whole CCSVI issue. This is happening everywhere, but not as viciously as it was there. It didn’t matter how many people I had tried to help get the right information. It didn’t matter how many nights I spent writing and re -writing the same information over and over because people couldn’t find it. I did this in other places also. I tried to help people by giving them the names of doctors who could perform the testing and procedure for them. I was willing to help anybody. There have been a few people who I felt uncomfortable giving doctor’s information to, but I did. One got my doctors shut down for awhile. The other changed her mind when it was all set. She did get the treatment later at twice the price, but everyone has the right to make their own choices. I know there are people making money buying and selling that kind of information. I tried to warn them about that too.
It’s sad that a place many PwMS turned to for help and support felt they had to leave. Most of them were the ones who also gave the most to the forum. There were 27 people there who have had the procedure, as far as I know. There are four left. None of them post there very often now. All of us know what having MS does to our bodies and our minds. Some of us know what it is like to have their lives back again. My only concern in any of this was to help inform others how they might have that too. This is one time, I am happy to be different. There are still many people there who I love very much. Most of them will never know that. I suppose a website that cares about their bottom line doesn’t have time to worry about individuals they can no longer make money from, or perhaps they can since they won’t erase my information. They no doubt weren’t fond of my rants against pharmaceutical companies anyway. After all they are dues paying members of the Consortium of Multiple Sclerosis Centers (CMSC) and sell their information about us to pharmaceutical companies. Those are the people who wish all liberated PwMS or ones who are heading in that direction would disappear.

I’m not angry. I am disappointed. There are many people on the internet who want to see people walk again. I am one of those. In my vent, and we all know that this is exactly what this is, I mean no disrespect for the PwMS who honestly believe that Dr. Zamboni is a phony, or that CCSVI is an enormous scam. They have the right to believe what they will. How anyone can believe that $30,000 worth of drugs in nice packaging is going to help them, is beyond me. Some of them do help some people. None of them have ever shown the promise of this procedure. I know first hand what it has given me and others I have been able to see and talk with about the first real joy they have felt in a very long time.

There really are people who are different. I am proud to be one of them, even if doing so angers others. I guess I didn’t realize soon enough that there are people who don’t want things to change. That I cannot comprehend their reasoning is my problem, not theirs. I wish the best for them. I am free now to spend more time with friends and family who have always been able to rejoice in diversity. The only obstacle to happiness is fear of the unknown and the unwillingness to learn. Humility has nothing to do with low self esteem and everything to do with being teachable.
Post a Comment