Sometimes I think it’s good to not always focus on MS. Mom’s MS is often a focus for us. It somehow sneaks its way into pretty much every conversation. It has a funny way of doing that- it’s a weasel. A sneaky one.
Today on the phone at lunch Mom and I just talked. She was in a good mood, she was focused and listening. We laughed and we just talked. I never asked about how she was feeling or how things were going today. This wasn’t on purpose but I just didn’t think about it because our conversation was so filled with other things to talk about.
This afternoon as I was thinking about our conversation I got a smile on my face. I was thinking of what a good conversation it was. It’s important that not every chat with Mom, not every sentence or thought has to do with MS. MS is important but it’s more important to focus on who Mom is without it. Not Mom with MS but just Mom. In my moments of frustration or sadness I forget this. These moments don’t come as often as they used to but today was a good day. Today I had the opportunity to allow my mind to be lost in just Mom through a phone call. And I am thankful for the moment.
Seeing old friends. Fear of the unknown. What kind of challenges await me there? Will I be able to get inside? Will my legs be stiff? They know I have MS but will I be able to hide it well enough so they don’t know how bad it has gotten? These are only a few of the thoughts I can imagine go through Mom’s head as we go into a new situation. A new situation where you can’t visualize what the future holds. You can’t visualize how it will all go down. Life is a big unknown but when MS is involved, it makes the unknown always scary. Never exciting. Not anymore.
Driving up to visit us last Friday I imagine all of these thoughts were in Mom’s head, plus some others. If it had just been a visit to see Sister K and me it would have been relaxed. There would not have been nerves but excitement. Instead though we were meeting with one of Mom’s college friends and her family for dinner. It brought an entirely new set of cards to play with Friday night. Mom got so anxious in anticipation of the visit that she psyched herself out. She let the evil weasels get the best of her. The problem is once the weasels begin to attack, if you cannot get a handle on the first one the others quickly pop up, taking over. They can take over fast too.
I was not there as they took over, but Dad and my Grandpa were. They were there as the weasels took over Mom’s mind. Took over her thoughts and they brought on stress which when mixed with MS is never good. Sister K had made some phone calls because they were running late. We were putting our stories together to determine what had happened. Then Mom called me crying. She called me crying like I call her crying. There was a panic in her voice, a please help me tone and helplessness. As I listened I almost felt like I was in a dream. Is this really happening. What do I say. What do I say to my Mom when she is always the one who provides this comfort. She is better at this than me. This isn’t my strength. I wish she’d called Sister K. Sister K always knows the right thing to say and I am a gamble. Sometimes I get it right and sometimes I get it terribly wrong. So I thought of Sister K and what she would say. I came up with a new plan for the evening with the delay, that’s the easy part for me. I comforted Mom and assured her it’d be fine, that was the hard part for me. I felt a different sadness though in this situation. I felt sad becuase this was happening. Because this was a nightmare. Becuase no one else I know has to deal with this besides Mom. Because Mom wants nothing more than to get in a car for a little trip and have it be smooth sailing. Because it isn’t fair. It isn’t fair. It isn’t fair. I wanted to scream when I got off the phone with her like a little child and throw a tantrum with legs kicking and arms wailing it’s not fair. Because it’s not.
I also thought about how lucky so many people have it and they don’t even realize it. How simple their lives are in comparison to mine. How they have never watched a disease this horrible take over their Mom. How they have never seen their Mom feel so helpless and felt helpless themselves too. It was a tough tough afternoon. It got resolved as it always does. My family stepped up and we did our thing. Sometimes in situations like this where other people are involved I feel as though we are performing on a stage and some nights are easier than others. But somewhere in the middle of our “performance” the problem that was once there is lost. The happiness we felt we were faking takes over. We begin to laugh again genuinely, not forced. Our minds stop wandering from what just happened to the present. We stop saying in our heads “it’s all going to be okay” to calm ourselves down and instead we are comforted becase we begin to feel like it is all okay. We survived another battle with MS. We didn’t let it bring us down again. Maybe it’s okay to perform, to focus on the stage because by forcing ourselves on stage there is no time to be sad. No time to dwell on solutions to a problem that can’t be fixed. It is on that stage where somehow life becomes okay again.
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.