Monthly Archives: August 2017

Support?

A couple of years ago, for the first time in at least 15 years, I attended a support group that was organized expressly for people with MS (multiple sclerosis). I’ve resisted going to these type of meetings for a couple of reasons:

  • In my previous experiences, the groups I’ve attended are nothing more than rants. Bitch-fests, if you will. (If you won’t, I will.*)
  • I’m living in a relatively new community and for the first time in my life, I’m nervous about getting out of my house and driving around, especially in the winter. My home has serious winter weather. If I were to wreck or get stuck, I’d be almost helpless, as far as walking any place. (That’s not easily done with a rollator in snow or ice.) 

There were five people in attendance at the meeting; that is, if you don’t count drivers and spouses. Back in the day, when I was newly diagnosed, and for many years after, I was in remarkable condition (nobody could tell anything was wrong), and I would have gone to a group like this one never to return. Two of the attendees (including me) were using walkers, more specifically, rollators, like this- rollator

and two were using canes. In the past, to see folks using such aids would have been exactly what I feared most, and I did my level best to not even imagine such a situation. 

Anyway, at this meeting, a question posed to me was, “Are you still driving?” I am. We went around the group to learn what DMT (disease modifying therapy) each of us was using. One person had never used ANY DMT, an obvious point of pride for her. She is a believer in the all-natural approach: she adheres to a Paleo diet, and proclaimed that at her last doctor visit, her neurologist told her that whatever she was doing, she should keep doing it. Is it tacky for me to point out that she was one of the people using a rollator, and oh, by the way, she was considerably younger than I? She insisted that she only had to use the rollator because of an injury she sustained during a therapy visit. Come again? Much much more on this, in a later post, and yes, I know that my attitude about her approach is showing. I did say that I had mixed emotions about the idea of a group.

Almost two years later, I’ve never returned to this group. Its leader sends me text message reminders each month, but I have no desire to return. I think there are a couple of reasons for this:

  1. The meeting is held in a Starbucks that is located inside a grocery store. Starbucks is a powerful motivator for me ordinarily (cappuccino! Muffins! All manner of pastries!), but while the parking isn’t bad, it’s a very public space, tends to be noisy, and has standard chairs (read: metal, cheap, & uncomfortable!). I have noticed in the past couple of years that this type of chair can be excruciating to sit in. It dismays me that a seemingly small thing has become a big deal for me, but it has. 
  2. The group of people was nice enough; there wasn’t anything off-putting about any of them. Well, honestly there was one thing. It seems that many people (most?) are comfortable with hugging people they’ve just met, but I am not one of those people. I’m friendly, I listen well, and I think I’m good at getting other people to talk and engage. But hugging someone who is essentially a stranger has never felt “right” to me. One woman insisted on hugging me at the end of the meeting. 
  3. Finally, the effort that it requires for me to get ready to go out, get into my car, drive to Starbucks, sit in a puny metal chair, pack myself up again (putting on my coat in winter, gathering my belongings and returning them to my purse-which, by the way, is always a cross-body bag these days), saying goodbye, navigating my way back out of the store, into the parking lot and into my car is a great deal more effort than the return on the experience. Does that sound harsh? I don’t mean to be. But I must choose what’s worth a half day of preparation and effort, and I judge this event to be too much for too little. It’s occurred to me that I might meet other people who’ve begun to attend the group, and that if I was a regular participant, I might be able to help improve the group (job one: find a quieter, more comfortable location!), but it just seems too much. 

I long for the days when I stayed incredibly busy, and fairly flew about many activities. But I’m unable to do that anymore, and instead of continuing to grieve about it, I’ve chosen to be decisive. 
*To my point, this group wasn’t the ranting type, really, but it was disorganized, and had a terrible ad hoc feel to it. The organizer had purchased doughnut holes to share, which was nice, but the only things that happened were that we were all asked to complete a sign-in sheet, we all introduced ourselves, and then there was just general discussion. 

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