Is It Us or Is It MS?

Is there a way to walk your Mom with MS into a social gathering and not be the center of attention amongst friends? Or is this just something that is going to come with the territory now? It is something I am sitting here wondering today after a wedding this past weekend.

Halfway through, Mom needed to move from the table to her wheelchair to go to the restroom. So people gathered to help but really we didn’t need it. And the extra people just stared. Finally Dad said, why don’t ya’ll go dance or something and they quickly walked away.

Later Sister K took Mom into the restroom and after being gone for awhile I went in to help out. But people wondered where we were. Our absence created attention.

People wanted to ask Sister K, Dad and Me how Mom was- and that created attention. For the first time though, that part didn’t bother me. Maybe you could call it growth…but I didn’t get angry or irritated. I talked honestly to two of Mom’s close friends and one of their daughters. And they listened. They heard what I had to say- they admitted it is a lot for Sister K and I to be dealing with, they expressed they are worried, they wondered if there was more to be done, and I listened and I answered…I was honest.

But now today I can’t help but wonder if I shouldn’t have said anything at all. My family is a tight circle and a quiet bunch..and we are getting quieter as far as Mom’s MS is concerned. But at the same time, MS is not exactly a disease you can keep quiet- especially when people witness the changes in Mom with their own eyes and how those changes seem bigger every time they see her. So what do you do? What do you say? These friends of Mom’s are close to her and important to her, therefore it gets sticky. I don’t walk around telling anyone and everyone- and sometimes I don’t believe people’s intentions for wanting to know are good. But in this case I did.
So I struggle with how much do you say/how much do you reveal. Dad has said he doesn’t want Mom to be stuck at home forever…but if we are going to do things where we take Mom to events like this are we then also opening ourselves up for questions. Maybe we invite it upon ourselves. I am not sure exactly.

Does your family have any similar experiences with this or do you think it could just be a symptom of my family? Is it possible to hide what is really happening with a progressive version of MS or are people just going to ask questions? Do we possibly just need to understand this is what comes with the territory of taking Mom out considering the stage her MS is in currently?

3 thoughts on “Is It Us or Is It MS?

  1. Hi,
    I wonder if you’re looking at this the wrong way, maybe because your family is so private? When friends see that there is something obviously wrong with your mom, I think it’s natural that they would have questions. And because they’re friends they want to help but don’t know what to do – hence – they stand around the table, not to be intrusive and stare, but because they are unsure what their role should be. The same feelings of concern also prompted them to wonder if you were OK when you took a while in the restroom.

    I know that there are a lot of people who are rude and intrusive, and I agree that you should ignore those types. And when you take your mom out, you can politely smile and say ‘no thanks’ if someone offers help, advice, etc.

    all the best to you and your family,

  2. I have been reading your blog for about 2 yrs. now. I’m 48, a mom of 3 and I have ms. I think of my children every time I read your blog, but it helps me understand how they must feel or think. I was diagnosed with ms in June of 2010. My oldest daughter is 22, son is 25 and youngest is 14. I can still walk …..slowly. I fall alot and have learned to laugh about it instead of cry. My oldest daughter is married and expecting their first baby at the end of this month. I haven’t been there for her like I wanted to be and I know I can’t walk while holding the baby….also can’t drive to be with her. I don’t drive now because my legs are numb and have spams. I’m sure your mom loves you very much…and hates what she can’t do now. I’ve tried to get my daughter to read your blog but I don’t know if she has yet….I thought it may help her to know she isn’t alone. I’m praying for us all and please don’t stop your blog…u r helping people. Take care and email me if u ever need a friend.

    • Thank you so much for this comment and I have to apologize for taking so long to respond. I took a little break from this place- but I am back again. I can very much relate to your story, your struggles and it sounds a lot like my family. I have mentioned before one of my Mom’s main worries for when my own husband and I have kids is how she will be there for me…how much this was not what she had envisioned. I appreciate knowing my words help you and hopefully your kids as well. I never mean to make people feel upset about their MS or feel bad about the impact of their disease on their family- I just started this because there seemed to be a big perspective missing out there and that was the one of a person whose Mom has MS and what it is like. I love my Mom very much and MS or no MS I wouldn’t trade her for anyone else in the world and I know your children feel the same way too. I also believe only the strongest families can handle MS and we should in many ways consider it a testament to our family’s strength.

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