An Obsession or a Gift?

September 12, 2009 at 8:17 am

I read with interest the comments that have been posted as I remember vividly realizing that probably three years went by before I was able to spend a day and not think about GBS in some aspect or other. I figure it was 10 years before I really didn’t think of it at all.

Now I am looking at 46 years past. I had GBS at age 24 in 1963, and actually thought it was behind me. When the residuals began to manifest, about 20 to 25 years after I “recovered,” I inquired about a “post syndrome” to be told “no such thing.” So I started a support group, thinking someone might come who had it as long ago as I had – and then we could compare notes. That never happened. That was 1992. The support group is still going; I have learned a huge amount about GBS, volunteered for a committee to help get new groups going and that was 12 years ago and I have friends from all over the world, who I met at the various Symposiums.

I worked with seniors and in the disability community for over 20 years and my experiences proved invaluable in terms of understanding what people were going through, whether older or dealing with a disability. To me it has been an incredible gift. I am still involved with people, via the phone and the internet, on an almost daily basis. It is something I CAN do, as now I have many physical limitations that mean I can’t do what most women my age still do. Now that I have that extra time I get to spend it doing what I love – crafts, talking to people, etc. I have learned to adapt to any changes that occur, but it is not always easy or quick. I have/can come to position of acceptance, no matter what changes. This has not been without the help and support of my husband, children and good friends. It is a joyful, peaceful place to be! I look forward to many more years to come, while appreciating each day in every way. I wish that for everyone.