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

Breakfast With Jane

We started with coffee and bagels with a shmear.

The usual chit-chat followed, but somehow it got around to this...

"Your husband must be a saint."

I stared straight at her and swallowed.
"You mean for staying married to me."

I wasn't asking a question. I knew what she meant. She was stating what she believed to be the obvious.

She continued, "I mean not every man could...You know what I mean...not all guys could..."

And then silence.

Yes, I knew.

This was too much.
A serious lump formed in my throat. I smiled anyway. I didn't think I could stop the tears, but somehow I did.

Yes.
Jane had just confronted and confirmed my deepest insecurities. She interrupted my thoughts and fears; the ones I had been turning over and over in my mind.
Admittedly, I think too much. I feared I had become less of a partner and more of a burden to him...Not so much of a friend and lover, but a patient for him to take care of, even though I knew how hard I was trying NOT to be.

"Your husband must be a saint."

A saint...Really?

For better. For worse. In sickness and in health....till death do us part.

I knew her words would resonate with me a long time. You know how I know that?
We had breakfast over a year ago, and here I am telling you about it today as if it just happened. Sometimes I think if people would just stop and listen to themselves through my ears before they say things, they would stop.

Now, Jane is fairly stoic.
She's not one to talk a lot about my battle with muscle disease, but on this crisp, sunny January morning in South Florida, she was asking me a few questions about it. So I obliged. I didn't elaborate, however, since I knew her tolerance was limited.

I painted a few scenarios for her with limited brushstrokes. In retrospect, it must've seemed like I spilled the paint and wallowed in it, unable to pull myself up, leaving hubby to clean the mess the best he could. My attempts at painting had left a pretty messy impression on my friend.

Suddenly, I didn't feel like talking about the recent cool front or parenting or shopping anymore. That word, 'saint' was stuck in my brain. So I sipped my coffee and waited for her to say something else.

I didn't care what she thought about my life from my husband's perspective at this moment. I had stressed over that one enough. I needed her to understand what life was becoming for me now. Pretty selfish, right?

The thing is, she didn't ask.

I love Jane. I always will. She is my friend and I hope she always will be.

But that breakfast provided a watershed moment for me. It was then that I realized that it doesn't matter what Jane or you or anyone else thinks about my husband or me, or our life together now. It is different than it used to be, but it's not terrible. And there isn't a saint between us.

xx

P.S Jane is still my dear friend. I have not used her real name. I would never hurt her. She doesn't know about this blog and she isn't on social media.