I Need You

According to Merriam Webster, the following is the definition of a Support Group:
a group of people who have similar experiences and concerns and who meet in order to provide emotional help, advice, and encouragement for one another...

When I was in the first months of my diagnosis, I quickly realized I had no one to talk to who could actually relate. It was a really lonely place. I don't want to get all dramatic, nor do I want to underplay the point here, but it was terrible for me. My family was trying to the best of their ability...BUT...you knew that was coming, right? But, they couldn't truly understand. You see, like Merriam points out, they weren't having similar experiences to mine when it came to their muscles failing and all the emotions surrounding that. Plus, they were busy being affected by my crisis in their own personal ways.

A resource I often tap into is the Bible, and it says things like we're supposed to share each other's burdens and  encourage each other &  build each other up. I knew I needed some of that but wasn't finding it. What about you?  I looked for a support group, any group that would even sort-of come close to helping! I found support groups for everyone and everything except people with neuromuscular disorders...
Oh wait! I take that back. There was a group of Parkinson's patients at my local YMCA. Upon investigation, however, I just didn't feel it was the right place for me. I knew it wasn't the group where they'd "get me." I needed a group for muscular dystrophy or multiple sclerosis; some group where one day people were moving and walking and then the next day...well, not so much.

In this country, we've done a pretty good job, I think, trying to be supportive of the emotional needs of people suffering from effects of divorce, abuse, alcoholism, addiction, PTSD, cancer, autism, domestic violence, etc. There are also support groups for those trying to quit smoking or lose weight. We all want to fulfill our need for belonging and the sense of, 'we are here for each other,' especially when faced with a serious health problem. All of these other important matters are worthy of communal support...
...But so is neuromuscular disease. My local MDA chapter began implementing support groups in January of this year and I'm thankful. I don't want anyone else to go through what I did...without the ability to connect with people who struggle in similar ways we do, depression sets in and well, that's no good. It's the reason support groups are important and why they're so successful. And, they are a lot cheaper than individual psychotherapy. (But, if that's a requirement, I whole-heartedly recommend it!)

My muscles challenge me every single day! Do yours? If so, then you've found a home. You are the reason this blog exists. The lack of community support, having no one with whom I could connect in person, and the deep need to find those who were also challenged by their own muscles everyday, prompted me to begin writing as an avenue to find you, my new internet community. I can't travel out to support groups much any more. Maybe you can't either. I had hoped that this blog would become our meeting place.
And so it has in many ways. I'm grateful. I love hearing from you. Please comment on this blog! I encourage you to do that! I enjoy hearing from you privately also. Sharing our struggles and victories is a critical part of this experience. Remember Merriam's definition of a support group? If we can achieve even a fraction of that here, then I can rest, knowing I'm fulfilling my purpose. xx

Ann