I call my mom everyday at lunchtime. It’s our time and we fondly refer to this hour as “lunchtime chats.” These actually started when I began my first job and realized I had a lunch hour everyday but not necessarily someone to spend this hour with. My mom became just that person. During lunchtime chats she hangs out with me on the phone while I run errands, order coffee, go for an afternoon walk or sometimes even eat my lunch. Our conversations vary and I can usually tell by the tone of her voice, either carefree or a slight hint of stress that only a daughter could pick up on, how she is feeling on a certain day.
Today when I called she was a little uneasy. A friend was coming to pick her up and realized her walker was in my Dad’s car and she couldn’t get ahold of him. Mom also started talking about feeling nervous because she is just scared. She didn’t say what she is scared of but I know. We all know. It’s a silent understanding. She is afraid to fall and afraid of not being able to get up.
My mind almost felt paralyzed becuase I felt so sorry for her. I wanted to fix it. I wanted to solve this problem. I wanted to say the right thing so badly. This is the third day I have written these words and I am beginning to notice a pattern. But I can’t fix it. I can’t fix it because logistically I am not in the same city. I also just cannot fix this. I also had a hundred thoughts flooding my head because I didn’t know what to say. Do I try to comfort my mom, I tried rattling off the list of her worries and discussing each one but I knew that fear in the back of her mind was too great and preventing her from being rational. So instead of drawing it out and making both of us frustrated I got off the phone. It ended pleasantly, I told her it would all work out and not to worry. I did this because all I could think was I don’t know what to say or do, I should probably just get off the phone before I end up frustrated and stressing her out more. It has bugged me all afternoon because I don’t know if I did the right thing but I also don’t know that it was the wrong thing.
My mom’s fear of falling is very real because it has happened. I can feel her uneasiness when we are out in public, I watch as she is very careful and very focused, not moving too quick, making sure every movement is calculated. I can feel it and it makes me feel sad. Sad because she is sad. Sad because her life has changed. Sad because I can’t fix it.
But, I can continue to be there. Continue to have our treasured lunchtime chats and continue to talk about these things and help as much or as little as I can. Maybe I help more than I realize. It’s interesting how I never know when I am successful in helping but always definitely know when I am unsuccessful. I come from a loud family of all girls. There is never a question if someone is unsuccessful in helping. Everyone knows because they can hear it!
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.
My family has always been late for things. For as long as I can remember punctuality was not a characteristic that people would use to describe us. It was never done in a rude fashion, but just about 5 to 10 minutes behind schedule. I say typically because it was selective. We were on time when it really mattered for things like school, dance class, weddings, etc. Things where punctuality was important and necessary. Now that my mom has MS our tendency to run late for things has taken on a new life of its own. We operate on a completely different time schedule, usually running very behind.
It’s not all my mom’s fault, I can’t completely blame her at all. Let’s take Christmas 2010 for example. I have always had a bad habit of biting my nails but I finally grew them out for my wedding…and so I could wear dark nail polish for Christmas. As we were running around trying to get out the door for Christmas Eve mass I realized I had forgotten to paint my nails. At this point my dad was running around looking for the checkbook, mom was making sure everything was in her purse and my newlywed husband just stood there in awe of this. This is because his family runs 10 minutes early to everything, but I digress. We had about 3 minutes before we were walking out the door. My sister looked at me and said we’re going to paint them, grabbed her nail polish and we did it. We put my hands on the kitchen counter and with 3 minutes to walking out the door she painted my nails. They were drying as we arrived at church.
I bring this up because it makes me laugh but also because my family is having to learn to be a little more organized to get out the door now. I also have to learn to be okay with the fact that we do run a little later now. I have a slight Type A personality when it comes to these things. I don’t mind running a little late but I have a point when I decide it’s too late. It’s a basic formula for my meltdown: Getting out the door drags on for various reasons that don’t relate to my mom (forgetting keys, forgetting garage openers, forgetting sunglasses) + my mom needs extra time = me putting stress and pressure on my mom in the situation.
The reality of the sitaution is the world is not going to end if we are late. We will get there when we get there. We are not going to be in trouble if we are late. One of my college best friends used to say “what are they going to do?” and that’s the attitude I need to have. I need to repeat these statements over and over. Over and over. I need to have them screaming in my head in these moments, drowning out whispers of stress as I begin to pass the whispers on to everyone else. Instead I need to take a mental step back in these moments. I need to help where I can but I also need to treasure the chaos, treasure these moments. Treasure that we are all together piling into our car to go somewhere the same way we have done all my life. We are all together in these moments. I need to focus on the moment and enjoy being fashionably late x 2.
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.