Having a Mom with MS

I have a dear friend whose mother was diagnosed with MS while she was still a teenager living at home.  As a mom with MS, I was curious to know what my own children might feel and think throughout our life together, so I asked her if she wouldn't mind sharing about her mom's disease and being raised by a mom with MS.  She generously shared her thoughts and feelings.  I appreciate the honesty and openness portrayed in her words.  She was 14 when her mother, then 45, was diagnosed with MS.  Here is her story:


My mom was diagnosed with Multiple Sclerosis around Christmas of 1997. She had probably gotten the diagnoses a few weeks before, but I remember she and my dad made the big “announcement” about it while my grandparents were there for Christmas. When they first told us, I was in shock and terrified. The only person I had known who had MS was a man who was very disabled and close to death’s door. I calmed down quite a bit after they told me that MS affected everyone in a different way and that I couldn’t compare my mom’s disease to anyone else’s.

Over the years my mom’s MS became more and more a part of everyday life. And since it progressed somewhat slowly and it was there every day, it just became life. I didn’t question it. When I was living at home, it didn’t affect me much other than we always kept the house at a cool 72 degrees and we went on fewer family vacations, and neither of those things bothered me all that much.

I am a worrying optimist so in general, if things seem to be going well, I see things positively. For several years, MS minimally affected my mom’s mobility and balance. She had numbness in her left hand, she walked with a cane or holding my dad’s hand, had trouble climbing stairs, and wilted in the hot North Carolina summers. But she seemed happy and, for the most part, was able to take care of herself so I didn’t think too much of it. It was always there and so just a part of my normal life.

I always felt really proud of my mom and proud to be her daughter. My mom went through some hard times and she always came through them with a smile on her face. It didn’t matter that my mom was “disabled.” She was kind, thoughtful, generous, and the best listener I’ve ever met. She was my best friend and I wanted everyone to meet her and know how amazing she was.

Things didn’t get hard for me until around the time I got married. I was away at school for about a year and then lived far away from my parents for the next four years. Each time I saw my mom--which was about once a year--her physical condition had worsened. We talked on the phone or chatted on-line almost everyday, but I didn’t see her every day. MS became less and less an active part of my everyday life so it became more difficult for me emotionally each time I saw her.

One time in particular stood out to me. We had come home from Korea for a two week visit. My mom had just gotten her motorized wheel chair. I watched her eat from across the dinner table and I was shocked by how much muscle mass she had lost in her left arm! It was just skin and bones. It was a terrible reminder of her disease and that it really was progressing. I couldn’t pretend it wasn’t there.

The last few years of my mom’s life were really difficult for me. She began to lose her mentality and for a while treated me really badly. I don’t blame her at all, but it was at that point that I began to distance myself emotionally. I still went through the motions of loving my mom and taking care of her. She was still my mom after all, but most of the time, it wasn’t really her anymore. I don’t regret being emotionally disconnected; I think it saved my sanity. I just hope that it didn’t hurt her in any way.

We had been preparing for my mom’s passing for several months before she died. We weren’t wishing for her death, but we also didn’t want her to continue in the poor quality of life she was living any longer than she had to. I had assumed that I had done all my grieving; she was already mentally gone. I was worried that everyone around me would think I was a psychopath for not being sad about my own mother’s death, but after the fact, I realized that her death wasn’t the thing to grieve. The thing to grieve was the full life lost to Multiple Sclerosis, the adult mother-daughter relationship, the chance for my children to have her as a grandma. She would have been awesome at all of it.

My friend's mother passed away at age 59.  But it is obvious that she was a strong woman and a great mother.  As a mom with MS, I know that it is challenging.  And it is true that MS affects everyone differently, so my own life will likely be very different from that of my friend's mother.  But I did glean a few tidbits from this that I think I can apply to my own mothering experience.
For one, It is encouraging to know that because my children will know nothing other than their mom having MS, they will likely not be too affected by it while they are living at home.  They may notice that mom cannot take them out to the park in the middle of the summer, and that I have periods of time where I cannot walk or write or drive.
I had never thought about how it might affect them once they were out of the house.  I will have to make an extra effort to skype with my children and let them see me often so as my disease progresses they will not be so shocked.
I also think I should write letters for my children to read as my mind goes (which it frequently does with MS as you age), to remind them that even though my brain may forget certain things, my heart never will.
And I need to write letters to my future grandchildren as well.  I hope that I will live to meet them and get to be an involved granny, but realistically, it may not happen.  So I should prepare for this real possibility.

I am grateful that my friend shared her experience of having a mom with MS.  My disease in no way defines me as a person, but it is a big part of me and I do need to accept it and let it change me.  I recognize that I may need to live differently than others around me in order to live the fullest life I can for me and my family.