Monsters Not Invited

I don’t remember exactly when my mom was forced into a wheelchair. I think I was in 3rd grade. I use the word forced because she fought long and hard to avoid losing the use of her legs. She needed a cane for stability almost immediately after her diagnosis when I was a year old, and reluctantly moved to a wheelchair when crutches weren’t enough.

My mom poured herself into anything that could help her in her battle against MS.

Sometimes I felt like I was watching from afar, locked up helpless and unable to ease the suffering as MS took my mom one piece at a time. Most of the time I felt like I was right in the center of it all, like I also had MS, or MS had me. From either perspective, I felt helpless and afraid along with my mom.

She was persistent and resourceful and always looked for the positive. She was skilled in obtaining resources for financial and emotional support for both of us. In spite of her efforts, I often felt overwhelmed and victimized. I never shared this because I couldn’t upset my mom. She encouraged me to communicate openly, and I disregarded or avoided many of my feelings and needs because her needs came first.

At one point my mom tried to teach me how to meditate when I was about 9 years old. She gave me a mantra to repeat silently in my head as we sat propped up on her bed next to each other. I spent most of the time with one eye open watching her and trying to figure out how she could sit there like that. I don’t think I focused on my mantra for more than 2 seconds at a time, but I loved that we were there together and she was including me in her healing efforts.

One of her writings stuck with me over the years. I empathize with the fear she felt and I knew the monsters. Here’s an excerpt from her journal:

“I have felt the hideous monsters biting away pieces of my cells when they hear that I am frightened of them.

I fight them often, but they are like ants and maggots you never get them all and they multiply and return in larger forces than before.

I hate the demons when I see what they are doing to me. I walk on two numb, stiff boards in place of legs.

Why me? People say I’m strong. Idiots! Can’t they sense how strong the demons are?

They cannot, I repeat, they cannot destroy my thinking faculties.”

The physical and emotional battle with MS was constant as was her drive to remain positive and look for solutions. I didn’t have a full appreciation for this when I was a child. How amazing it is that in the fight for her life she was able to harness and maintain a strong amount of positivity and hope. She truly was an inspiration to anyone who witnessed even a small piece of her journey.

Every great spiritual teacher for centuries correlates pain or suffering to spiritual growth at one point or another in their lessons My mom said she was chosen to be an “instrument of faith and guidance to others” through her “graceful endurance of this affliction.” This scared me as a child, and sometimes still scares me today. I ask myself, “Did God choose this for her? A lifetime of illness and pain?” How could God be good and do something like this at the same time?

For years, every time I felt anything strange happening in my body – a tingling, a numbness, a headache, weakness, I would immediately think, “Oh my God, please don’t let it be MS.” I wouldn’t say I fixated on the fear but it definitely permeated my thoughts in an unhealthy way until I was about 35. At some point I decided I was free and clear. Now I could worry about cancer instead, or whatever else God had in mind for me to be an instrument of faith and guidance for others.

People always said how amazing I am for taking care of my mom all those years. For my devotion to her and attentiveness to her needs. This was my life – my only reality. There was no choice in my mind and there was nothing else I knew since she had been sick since I was born. It didn’t seem amazing at all. I suppose I could have refused my duties or abandoned her, but that never crossed by mind. Afterall, by an early age, I was already a highly skilled, loving, people pleasing, black-belt co-dependent.

For the past 12 years, I’ve focused intently on my spiritual growth. It’s on this path that I’ve become aware of the tremendous impact my mom’s illness had on my life, and my thoughts. In many ways, the experience had a profound positive impact on my life and my development as an empathetic, accepting, non-judgemental, loving human being. The experience also propelled me into a fear and co-dependency state of mind that still, sometimes dramatically, impacts my life today. Those fear monsters I grew up with are still alive in me.

What is the point of this story?

All of us have life experiences that create our unique paths. Without these experiences we wouldn’t be who we are, and each of us has unique knowledge and gifts to offer others because of where we’ve come from and what we’ve been through. It's all part of this amazing life journey.

My experiences weren’t bad or good or right or wrong. They just were. This acceptance brings me peace and removes the possibility of any victim mentality. It doesn’t necessarily remove my habit and longing to control the uncontrollable and seek validation and security outside of myself.

My mom always said I was her angel. She said God brought me to her. I liked this idea and wanted to believe it, but it was a big job to save her and make our life wonderful. That’s what angels are supposed to do, right? I was never powerful enough. Issues were always bigger than me and we were never safe or secure as far as I could tell, but this never stopped me from trying.

Today, all these years later, I still feel most at home taking care of people, and I still have that old familiar feeling there is more I need to be doing, or the angst that something bad is going to happen. The feeling I’m not safe or secure. It’s probably part of our human condition, but it’s also feelings I've carried since childhood when I couldn't control my life or my mom’s suffering. The feeling that never went away after I grew up and my mom died – the monsters.

It’s not bad or good or right or wrong. It just is. It’s my unique experience and I’m ready for my next spiritual growth spurt and a deeper level of peace. Monsters not invited.