While writing my post yesterday, I realized I had finally discovered the ideal image to depict my thoughts on MS. Everything can be summed up by the theme park game where little weasels pop up and using a giant paddle players try and hit them back under ground as fast as possible. I don’t know the actual name of this game and I am not even sure it has one. I googled “theme park hit the weasel game” but was unsuccessful in my search.
Regardless, I started to think of all the different feelings/symptoms each of those weasels symbolize in MS for both my mom and me. It pulls together a range of symptoms which lead to problems which I try to solve for my mom. They are different for both of us but we each have our own set of weasels. To help me not stress and instead feel empowered that I can beat the feelings, I’m going to visualize holding my paddle and hitting each negative thought or emotion down even though I know it may pop right back up. I am going to commit to continue swinging the paddle to hit them back down below. Becuase that is what I have to do. I have to keep trying, keep swinging the paddle and hope that one day the weasel I keep hitting stays down for good.
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.
I took a flight last weekend and before take off I watched and listened as the flight attendants did their emergency monologue. They alerted me to all the details of the aircraft, pointed to the location of restrooms and showed me what to do with an oxygen mask in the event of an emergency. The message is simple if you really listen: be 2 steps ahead, be aware of your surroundings and be ready if there is an emergency. While listening this time I began to think about the amount of pressure I place on myself to be 2 steps ahead, to be aware of my surroundings and to be ready when I am with my mom outside of our home.
My mom now walks with a walker which has given a new dyanmic to our adventures outside the home. No matter where we are- the mall, a grocery store, a restaurant, a concert, even a football game, from the moment I get out of the car I immediately feel like I am on the lookout. I am aware. I am ready. I am looking for the easiest way for her to get inside, I am looking at the sidewalk to see where it slopes down so she can wheel herself up, I am watching out for cars to determine a nice gap that won’t make my mom uncomfortable when crossing the street. I am mentally 2 steps ahead. But it doesnt end there. Once we get inside I start over with a new list- the best way to leave when we are done, the easiest way to our table at the restaurant, which seat at the table is best for her, where can she sit on her walker in the store so she’s not in anyone’s way.
It’s a lot to think about constantly and I become overwhelmed at times. I really do mean well but I have an ability to stress everyone else around me because of it. My sister manages this better than me. She has always been better at managing the unknown in life, dealing with things as they come up. Not me. I am the planner and if I can’t be 2 steps ahead it is even scarier to live it in real life and dare I say feel 2 steps behind. Sometimes I think it’s ironic that I am a planner and the entire nature of MS mocks me because of it. Constantly. I am realizing the constant planning and constant thinking is exhausting. The only thing I can successfully predict is that I can’t predict how an afternoon at the mall is going to go. Regardless of my mom having MS, I will never be able to predict life.
So I try really hard to mentally relax, try to be more “go with the flow,” try to become comfortable with being 2 steps behind. I try to focus on the moment and not 10 moments from now. My mom having MS is teaching me this. Instead of one day at a time I need to take things one moment at a time. Easier said than done. I fail at this regularly. I fail at this more than I’d like to admit. But sometimes I don’t. Sometimes there is a day or a moment where I am successful. When I am I can see the happiness on my mom’s face and I can feel my own happiness in my bones. Not only did I make things easier on my mom but I made them easier on myself. I am learning to be more flexible and finding myself gaining greater peace of mind in the process. I’m trying to stay 2 steps behind one moment at a time.
My mom has MS. Words that have become part of my identity. They are now an element of my family and an element of my life. When I processed these words in my head for the first time I didn’t know the perfect way to react. I still don’t know the perfect way to react.
No one writes an instruction manual to help you deal with the words. I wish they did. Instead I am making it up as I go along, trying to do give myself lessons day by day, trying to deal with this day by day. Some days I do really good, some days I do really bad, some days I give myself an A+ and some days I give myself an F. I was a good student when I was in school. I studied hard and I made good grades. But this test I am now being given everyday, this class I am now enrolled in everyday, I didn’t register for it. I didn’t get a syllabus for it. I don’t know how to study for it, how to prepare for it or how to get an A+ in it and that frustrates me to no end.
Everyday my world is the classroom and everyday I am the student. My hope is that through this blog I can become a better student. I can collect my thoughts so when I return to the classroom I am better prepared. I can take a break from this class and enjoy recess.