THE YEAR OF A.L.S

Although I was following a Buddhist philosophy, I figured that since I wasn’t from a Buddhist culture and I wasn't participating in a Buddhist lineage like Theravadan, Mahayana or Tibetan, I wasn’t going to get enlightened this life time.  I was ok with this notion because I was benefitting and getting some relief from the practices I had been implementing such as Tonglen and meditation.

I began to understand that a great deal of my stress and anxiety had to do with my thoughts.  The challenge was that getting rid of them or changing them seemed impossible.  What I could do though was to begin to notice when the downward spiral would begin. I would think that what was happening should be different than what was actually happening or I feared that what was going to happen was not going to be the way that I wanted it to be. 

 The more that I observed this pattern of thought, the more I could see how hog-tied I was to these very rigid beliefs of how I wanted or expected things to go and how frustrated I would become when the situation didn't match my preconceived notions of how it “should” go.  Oftentimes, I didn’t even know that I had a preconceived attatchment to situations going a certain way, until things would begin to fall off the tracks of the hidden inner expectations that I wasn't aware of until that moment. This would be when anger, resistance, depression and frustration would kick in and I would begin to feel overwhelmed and exhausted. I came to realize how these invisible expectations and attachments were choking me.

 I really began to see this patterned behavior the year my mother died. She was diagnosed with ALS (Lou Garrick disease) in the winter 2010 and died one year later.  I remember being in the bathroom and realizing that my mother’s death was far more imminent than I had imagined. A heavy dense fog seemed to envelope me and my brain went numb. The thought was too much for my small fragile brain to handle.  I told my brain in that moment “ You know what, this is just too big of a thought for you to handle right now.  We are going to dismantle this boulder little by little.”  

Earlier, I had questioned myself for pursuing a Buddhist practice. Now, I realized the importance and usefulness of all the tools and practices I had received for they were going be the only way I would survive this impending event. 

I discovered that I had these held beliefs that motivated my actions and statements that were previously unknown to me.  For example, my mother slept with a oxygen mask every night. Unfortunately, most nights the mask would fall off in the middle of the night and she wouldn’t get enough oxygen into her lungs and thus wouldn’t sleep well.  Every morning, I would ask her if she slept well and usually she would tell me “no” that she had not. When she would tell me “no,” I would get a faint tightening in my chest. On the very rare occasion she said “yes,” I would feel an expanding relief in my chest. 

One day, I realized that I was often disappointed with the answer to this question — so why did I keep asking it? Why did I repeatedly trigger this awful feeling in myself?  I sat with this question for some time and it came to me that I had been holding a belief that if my mother slept well on a given night, then this trip towards death would not be so scary. If she slept poorly, it meant the journey would be full of suffering for her and me. 

I realized that it was this false belief that was making me feel the pain in my chest. I was able to see that it wasn’t true.  My mother’s journey to death was inevitable and how she slept on a given night was not going to alter or diminish the reality of the journey.  Instead, asking the question took me out of being present with her and into thoughts of the impending future, stimulating painful tension in my body. 

I stopped asking the question after that and instead began identifying other moments when I allowed other subtle thoughts  that were also altering my experience of the moment.  My sister and I would call it “getting hooked.”  A belief about a given experience would show up and it would hook us like we were fish who had fallen for the bate. Then I would notice that we were “hooked”: we were believing a false belief.  

For example, my stepfather did not have an urn for my mother’s ashes. and he kept saying that he would keep her ashes in a coffee can.  Did that mean he did not care about her enough to get an urn.  These were the types of thoughts that would “hook us” and it usually took one of us to unhook the other and see that these thoughts were never true. 

 This practice began to provide me with greater capacity to truly experience the moment.  I found that I had many wonderful and humorous moments during the year of my mother’s death. For instance, one day about 10 days before my mother’s death I had just fed her through her feeding tube but could not find the cork anywhere. This scared my mom and she became quite angry with me.  She actually stopped talking to me for a few hours. We got a new cork and eventually my mother let go of her anger.  A few days later, while vacuuming, we found the cork under the dining room table. It appeared that one of the dogs had stolen it while I had been feeding my mother without me noticing. We all laughed so hard when we discovered the real culprit.  

There were many other instances that made my mother and I laugh as well as cry as we glided towards death’s doors.  We experienced many different emotions and were afraid of none.   

Another mindfulness practice that I began rigorously implementing during this time was catching myself everytime my mind went into the future about my mother dying. This simple yet repetitive act helped me stay “present” for what was actually happening in that very moment.  Whatever was happening as challenging as it might be, I seemed to have the capacity to handle it if I stayed present and did not let my mind wander to the past and experience regret or to the future and experience a false sense of hope or fear. 

 What was tricky about this exercise was that it was very difficult to manage it when I was around others.  Even those who loved me and cared deeply for me could get me into a conversation or a thought pattern that took me out of the present and into the dreaded future. I really began to understand and experience the term being “mindful.”

 I learned that I had to create a buffer zone around my experience and that meant to not freely talk about my mother’s illness.  I noticed there would be times during a given day that I needed to release my sadness.

  I remember going to the hospital with my mother when she was first diagnosed. I sat in this enormous impersonal lobby waiting for my mother to return from all of the testing.  As I sat on the bench, tears began to flood my eyes and my body constricted as I felt this deep deep sorrow within me.  I sobbed and sobbed for a while, and while I cried people came up to me and asked if I was alright.  My response was simple “yes, I am just sad.” 

I cried a great deal during the year my mother died. I am so grateful I allowed myself to experience these emotions when they arose.  I also remember one evening lying on my bed and my daughter who was only 9 at the time came in and saw me crying. She gently climbed upon the bed and took my head in her arms, held and hugged me.  It was one of the most nurturing gifts I could have asked for at that moment. 

 While that year was one of the most difficult ones I have experienced, it was also one of the most vital, intimate and loving years as well.  I am truly grateful for that year, as I believe my heart grew substantially and my ability to be present did as well.