So, the first thing we had to do was go into the big city where the MS Society was located and meet the president. She approved of us and went on to explain all about the Society and the help they would provide to us to start a support group. When we left we had folders of information and lots of things to do. Mr. T had gotten a new job so we split up what we needed to do.
First up…find a place to have our meetings. This was easier said than done. It needed to be large enough to accommodate scooters, wheelchairs and walkers, be in a safe area, have access to bathrooms, and be close to parking. After some looking we lucked out and found a perfect place; it was our own town’s hospital.
We signed up for the room and got the night and time we wanted and were given a key to it. Mr. T called the MS Society to let them where and when the meeting was so they could add it to their monthly newsletters. We were excited!
Our first few meetings were tiny, but the word spread and we grew. Our goal was to keep the meetings positive, personal and helpful. It helped that Mr. T had a great sense of humor and was always in control. I was the greeter and good with one on one talks and kept track of the details of our members and a bunch of other things.
Over the next 6yrs we had a variety of speakers and planned topics the group wanted to know more about. We had a yearly annual picnic, we did our part with the yearly MS Walk, and we went to seminars, classes and other MS events. We also volunteered at the MS Society to help with various things. We even went down to the state capital to lobby on a certain bill we wanted passed. Guess what, sometimes you can fight city hall and win.
Along the way (surprisingly to us), we gathered awards and plaques. What that told me was that we had succeeded in helping and that is all either one of us wanted to do. However, I still feel like I learned far more on how to live with MS and life, for it taught me so much about me. I learned how to control my shyness and stand up for myself and others.
In the years with the group I met all sorts of people in all walks of life and about how they handled MS. A lot of it was pretty positive and some really negative and some very sad. But as a group we came together and learned from it and that was a good thing. We were going through doors together with more to come. The biggest thing I learned is that MS is just one of many diseases that are hard to live with and can change your life and you need a certain amount of support to go on with your life no matter what the problems are.
I am NOT an MS’er, I detest that terminology! I am simply a person who has an illness called MS but it’s not who I am inside. I do not let MS define who I am. I did do that in the beginning but I am an individual person not a label! Looking at all the people in my group all I ever saw were people’s abilities and their own unique personalities. It is important to stay true to yourself however best you can. Having MS and being a co-leader of a support group taught me about another side of life and I am grateful for that.
Next time: A big change of direction, a door closed and another opened door.
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