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.
I am in the midst of reading Hunger Games. If you need a complete escape from life that will take over your thoughts and consume you while you’re reading, this is it. I jumped on the bandwagon and am so happy I did. Sister K and I are reading them together. We have tried to get Mom to but she’s not very interested. That’s fine because it has given Sister K and I something new to bond over, as if we needed one more thing.
Hunger Games also provides a much needed escape. How often in life we just need an escape and we can’t exactly pack up and head to a beach everyday. Mom is escaping these days through games on her iPad- scramble, words with friends and newest draw with friends. Sometimes we escape through television shows and discuss them together, The Bachelor is a big family favorite. Our poor Dad. But the point is no matter what it is, sometimes you need an escape.
At lunch today Mom and I were talking about friends of mine who have started to have babies. I told her I didn’t feel ready for that and she said well I am in no hurry for that either. Her reasoning though is different than most Moms’ reasoning or what you would imagine- she is scared. She is scared of her physical limitations as a mother to me and a grandmother to someone else when the time comes. She is scared she won’t be able to offer me the support I need like her Mom helped her when I was first born. She is scared of this because it is a big unknown. What is also an unknown is how Mom’s physical state will be when this time comes. I told her we would just deal with that when the time comes and made some silly jokes about making Sister K come and Mom could just bark orders at her while I caught up on sleep. And she laughed, but at the same time it doesn’t change things. It doesn’t fix the unknown for us.
So after we had that chat I needed an escape. I’m not running from problems or fears but at the same time this is one specifically I can’t dwell on because I can feel my mind beginning to go crazy when I think about the topic too much. I can feel myself get upset. It’s hard when the future used to bring a sense of anticipation and excitement of things to look forward to for our family and now those moments have an underlying sense of fear.
So I escape. I have Hunger Games to thank for that escape today. Another moment it may be a tv show or a blog. The important thing though is to escape. I know it’s healthy. It allows me to take a break, to refocus so the parts of the future that are scary and unknown aren’t the front of my mind at a time when it’s not necessary for them to be there.
Do you believe in escaping from life sometimes? What’s your escape?
“That’s so annoying.” Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.
As I was talking to her, something happened. Instead of trying to solve her issues or getting sad myself, I told her “that’s so annoying, Mom.” And I just kept at it, like I was talking to a friend who was having a whole bunch of bad luck. Taking the MS out of the equation. I chimed in with her frustration and you could hear how frustrated I was for her in my voice. Strangely enough, I think it helped. In that moment I was on her side. I wasn’t saying you should do this, you should try this, Mom it could be worse. Instead I was on her side and I was mad at MS for her. I was mad at life for her.
If I think of when I am having a period of bad luck and people tell me “it will be okay”…sometimes you just really want them to get mad with you. Show you that you’re not alone and your feelings are justified. As a self proclaimed “problem solver” I have a tendency to try to fix these things before I allow myself to sometimes really understand what someone needs. Sometimes people don’t need a solution, they don’t need a positive spin, they just want someone to get mad at life with them. Without knowing this you actually help them more by not trying to fix their problem than fixing it.
So today I got mad at MS. I got mad with Mom. We chimed in together about how this is so annoying. How much this sucks. How Mom just can’t win. It felt good.
Lesson learned: I think I will get mad at MS more often.
Mom has developed trouble with a symptom called spasticity in her legs. I don’t exactly understand what it is or means. The only thing I do know is Sister K and I like to do a funny accent to make Mom laugh and say “spaaasticity.” I did some scholarly research which amounted to googling and found this at the National Multiple Sclerosis Society website. I don’t know much about spasticity but I know when Mom is having issues with it she describes it as tightening and occasional feelings of shocks sent through her legs.
I think her use of the word “shocks” is interesting because it is also a good word to describe how I feel about this too. Shock because MS and the symptoms that come along with it are never ending. Everything I read, everyone I talk to has a new one that I never knew existed. No two people experience it the exact same way. Personally, I hate this part of this disease. I think it makes coping with it more difficult because there is no way to predict what will or won’t happen to Mom. There is no direct path of what usually happens or which symptoms usually occur. There are some symptoms Mom doesn’t have and others she has had for awhile. Will other symptoms surface later or is this as bad as it could get? All these questions make researching and reading scary too. It makes it scary because sometimes I enjoy living in the “dark” on big issues like this. So I struggle. I struggle because people tell me to do the research and get informed. I struggle with how to find a balance between the known and the unknown. One of which is scarier for me than the other.
One thing I can do though is try to understand. When mom talks to me at lunchtime and starts opening up about how she is feeling on a particular day I ask questions. I try not to ask general/basic questions but specific questions. What does that feel like, describe it to me, does it hurt, etc. I am finding that by asking her these it is also getting her to talk about her MS and giving her a way to vent about it. It is also making me more aware of what is affecting her. I used to be inclined to think she was exaggerating things or making them sound worse. I had a tendency to brush off her comments about not feeling well and change the subject. I am not proud of that but if I am going to be honest it is true. In trying harder to understand the specifics of Mom’s symptoms I hope to be able to help her through them better.
A few weeks ago when Mom was visiting we were hanging out at Sister K’s apartment and her lower back was really hurting. In the past I might have just brushed this off but I really sat and listened and thought of ways to help. I remembered my chiropractor is always telling me to use ice- 10 minutes on, 10 minutes off. So I got up and headed to the fridge where I found a frozen bag of vegetables I knew full well would never be used by Sister K. So I came back and put the ice behind Mom’s back as she sat on the couch. For the rest of the evening while I was there I was taking it on and off to help her. She later said it really helped and she felt so much better. It made me feel good because I knew I had made a difference in helping to ease her feelings of pain for an evening.
I can’t help all the time but if I can every once in awhile it will make a big difference in helping not only Mom but also helping me not feel so helpless in our fight against MS.
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!