Is this really for me?

After MS Walk:Columbia 2010 was over, I felt a little lost.  For months now, all the extra time and attention I had has been going to fund-raising and preparing for the walk.  If I haven’t mentioned it before, I can have a very obsessive/compulsive personality.  Well, I quickly decided that even though the walk was over, my work with the NMSS was far from over.  From things I had and hadn’t noticed happening at the walk to grandiose ideas of how to spread awareness of MS and the NMSS, I was now on a mission.

I contacted the president of my local chapter and was granted a meeting with him.  I then spent the next week and a half pouring over facts and finances for both the Susan G. Komen Foundation and the NMSS .  I went over the website for the NMSS and my local chapter very carefully, trying to learn as much background material as I could.  The end result was a five-page report comparing and contrasting the Susan G. Komen Foundation and the National Multiple Sclerosis Society with ideas/suggestions that I thought could be implemented by the both the National Society and my local chapter.  That meeting might be a story for another time.

While I was exploring my local chapter’s website, I happened upon a section that listed self-help groups in the chapter.  When I was first diagnosed, I wouldn’t even entertain the idea of becoming involved with the NMSS, let alone attend a self-help group.   Back then, I was basically fine, and the thought of confronting what may turn out to be my future petrified me beyond belief.  Participating in the MS Walk was a big step for me, but I wasn’t so sure I was ready to venture into that unknown/scary world of self-help groups.  However, as I was briefly scanning the page, my eye was caught by my local group.  It was described as a mildly affected and supportive partners group.  This gave me pause.  Was “mildly affected and supportive partners” something I could do?

I called one of the ladies in charge of the meeting and talked to her for a little while.  She was very nice and described the format of the meeting to me.  She said that there would be some members who used assistive devices because their disease had progressed while being a part of this group and they did not feel it was right to ask them to leave the group.  I really liked that there was an hour where the spouses/partners/caregivers were separated and given time to talk about the issues that affected them while being part of the life of a person with MS.  I knew that this isn’t the life Ed thought he was getting when he said “I Do”.  Even though he was aware that I had MS, he had never been exposed to even the slightest of symptoms before my exacerbation when I was pregnant with E.  I talked with him and we decided that we would give it a try.

Unfortunately when the night arrived for our first meeting it turned out that we could not logistically (childcare related) find a way for Ed to attend.  We decided that I should go anyway.  I was actually a little excited about it. It turns out that even though I was on time, I was a little early.  There were only two other cars in the parking lot and they had people still sitting in them, obviously waiting.  I decided to call a girlfriend of mine and talk while I was waiting. Another car pulled in and slowly people started getting out of their cars. All of a sudden I wasn’t so sure I wanted to be here anymore. Everyone who got out of their car was using some type of assistive device.  I was describing this to my friend and I told her I wasn’t so sure that I was ready for this; that this sure didn’t look like the mildly affected group I had been told about. She encouraged me to go in anyways.  It appears that this was something many of my friends had been wishing I would do for quite a while now.  At this point she had to run, so I was left sitting is my car feeling a lot alone and a little scared.

I sat there for a few more minutes and just watched as more cars arrived and more people got out.  At this point, not all of them were using assistive devices, but I was still really wary.  I closed my eyes, said a prayer, opened my eyes, turned off the car, and got out.  The walk to the building entrance was a long one, and I’m not talking about distance.  I went inside, found the right room, and sat as much in the corner as I could.  People talked around me and I just listened.  I listened to very friendly, upbeat people talking about MS and about regular everyday events.  When they talked, you could easily forget who were the mildly affected and who were more advanced, especially if you closed your eyes.  Everyone was just there to be accepted for themselves and have a place where people understood where they were coming from. They asked me to introduce myself, and as I did, they all listened attentively and welcomed me warmly.  They had a physical therapist as a guest speaker who took up most of the rest of the meeting.  So I didn’t get to experience a real meeting, but that turned out not to matter.  As the meeting continued, more  mildly affected people did come in.  I guess the mildly affected like to make an entrance.  Maybe I should remember that. 🙂  However I’m not sure in the end that really made a difference.  I had already decided I would be back for the next meeting.

When the meeting wrapped up, people dispersed in their different directions.  I talked with a few people as we walked to our cars.  I will return next month, and my friend won’t feel the need to call me a half hour into the meeting to make sure I’m not still sitting in my car in the parking lot, and the walk from my car to the front door will take no time at all.


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