Smile Through The Pain

Sister K came to pick me up so we could do some Spring shopping together yesterday.  Once I hopped in the car she proclaimed, “I want to call Mom.”  So we called Mom.  We put her on speakerphone and chatted with her en route to our favorite store.  She felt like she was there and it made us feel like she was there too.  We talked about what we were doing, our plans, what we were shopping for and what we had been up to all day.  Mom said it had been a tough day because of her leg spasticity with issues that began in the morning.  We listened as we always do, talked about it a little bit without getting too deep and then lightheartedly changed the subject. 

I often wonder the best way to respond to my mom when she really opens up about her symptoms, when she really tells me how she is feeling.  Do I tell my mom I understand even though there is no way to completely undertand.  Do I pursue my first inclination to be the problem solver, the problem solver who often ends up putting her foot in her mouth.  Or do I do what Sister K and I did, lightheartedly change the subject so she doesn’t have to think about it. So I don’t have to think about it anymore.  This part is murky for me.  Murky because I enjoy relating to people, understanding them and trying to help them.  Murky because for the first time in my life I feel like I struggle with relating and I struggle with responding.  Especially murky because it involves one of the most important people in my life.    

I try to think of myself and if it were me with MS, how would I want people to react, what would I want them to say.  The answer is I don’t know.  I don’t know because I don’t even know how I want people to react or what I want people to say to me about my mom having MS.  I seem to struggle with this because if they say one thing I wish they’d said something else, if they say this I wish they’d said that.  Nothing is good enough for me so I wonder if my mom feels the same way.  I have never asked, never thought to ask.  I don’t know why.  I wonder if she doesn’t know the answer either. 

So what do I do while I search for the perfect response, I change the subject.  I find a silly thing to think about, to talk about and to laugh about.  We all laugh.  Sister K and I take turns finding the silly change of subject and we laugh.  During tough times we keep our conversations lighthearted.  Senseless.  Ridiculous. The more outrageous, the better.  We pride ourselves on these silly comments, crazy conversations, strange phrases only our family understands.  We use these as our crutch.  Sister K and I use these tools to bring a smile to Mom’s face, we can see it in person and feel it over the phone.  Laughing and smiling.  Our family’s greatest weapons against a disease that is trying to attack our laughter and smiles everyday.

Just Call Me Mrs. Fix It

When there is something that I think I need to fix, I want to fix it right now.  I could rattle off a list at any moment of things I think need to be fixed not only in my life but also my mom’s life.  But then reality sets in and I have to get a grip.  I have to realize I can’t fix everything and I especially can’t fix it all at once.  Especially not with MS.  It’s quite the opposite actually.  It feels like just as I’ve gotten a handle on solving one issue another one comes up and then another comes up.  It’s like the game at theme parks where you try to hit the weasels back down in their holes but just as you hit one another one pops up.  This is my life, MS or not this is how I feel these days.  It especially seems like in the midst of my own “life weasels” there is always something I am trying to solve for my mom. 

The biggest kicker in all of this is she doesn’t ask me to solve anything for her.  She takes it in stride.  She is comfortable with her good days and bad days.  She has found a way to cope with the MS weasel but I seem to think I know how she could handle it better.  How is that even possible?  How is it possible that I would know how she should handle her life with a disability better?  I am not my mom and I don’t understand what she is going through.  She is the one with MS, not me.  She is the one living with this disease everyday, not me.  I also can only imagine how exhausting it must be to constantly have MS in your life, like a pebble in your shoe that you can’t take out.  I can’t imagine what it’s like.  But what I do know is what it’s like to have a mom who has MS.  What it’s like to be the daughter in this scenario.  I need to better focus on my role of support but not my role of taking over.  I can’t fix this and I can’t fix every issue.  The one I can fix is how I act, how I respond, how I give support.  I don’t plan on standing by and watching this disease take over.  But I do plan on trying not to take over my mom’s decisions and instead take over my own decisions to show her the support she needs.