what are you thinking?
I live in Spokane, WA. The US Figure Skating Championships are here, and I am normally in a front row seat. I have followed skating avidly since the mid 80’s. Fortunately, for me, attending championship contests have been constant. If I were not able to be in a great seat, I would watch it on TV, never missing a second.
Last night a very nice friend of mine took me as her guest to the championships. It was wonderful to see again.
However, what I actually experienced was not what I was accustomed to seeing.
I’ve mentioned before that I suffered a TBI (traumatic brain injury) a couple of years ago. It really has changed my life, my outlook, and my future. Last night I recognized it has also changed my past.
My mom had Alzheimer’s. Horrible disease. She lived in Fla and I lived in Colorado, then Oregon, now Washington. Farther and farther away from her, needing to be with her, hating to see what she was.
I made a decision about my visits with mom: I would meet her wherever she was. Toward the end, she had no clue who I was. I would watch her before I approached, to get a feel for how she ‘was’ at that moment in time. she would look at me, blankly, smile, and ask how I was. that’s mom. the more ill she became the more she morphed back into her ‘hostess’ mode of making others comfortable. because she did this so well, most people had absolutely no clue she was so ill. she managed to fool people for almost 5 years, with this disease eating away at her memories, her being. Now, visiting her in the lock-down ward was always unsettling. I wanted to scream, I’m ALEXA!! I’m your DAUGHTER!!. that would have done no good. she simply did not know me anymore. so, I decided to try to get her to like me, every time I visited with her. she had always helped everyone, everywhere. huge volunteer, all of her life. I decided that whenever I ‘met’ her, I would try to get her to enjoy my company. for an Alzheimer’s patient, that is no small feat. they are angry, frustrated, isolated, and tired of being bossed around. they have no clue who anyone is and they want ‘out’. I would go to her, smile, call her by her name, and beam at her, “HI”. she always responded favorably.
sometimes, rarely, she would chat, laugh, and almost manage conversation. Alzheimer’s robs people of their ability to use their words. I learned to listen to her cadence and her tone. amazingly, I usually could converse with her, on her terms. all I wanted was for her to like me. just for that ‘time’.
a brain, robbed of its use is not pretty. people do not act the way we expect them to or the way we are accustomed to them acting. when I injured my brain, my husband had his hands full. I had outbursts, my language went to the gutter, I was angry, crying, unable to do things and unable to figure out why. the doctors had warned us several times but until you live it, you really don’t ‘get it’. when I was going through this with my mom, I was still intact (almost brilliant, or at least really smart, IMHO). I just wanted her to like me. I loved her enough for both of us. I wanted her to like my company. so, we would chat. sometimes we would hold hands. she had no idea who I was. I was careful not to intrude. I just wanted to be with my mom, or whoever she was at that time.
sometimes I would visit her and it would go really well. so, I would stay longer than normal. those rare times were golden and I didn’t want to miss a second of them. we would talk and laugh, her conversations would make little sense, but she liked me. she was happy in my company and I was thrilled to almost see a piece of her, coming through. if anything or anyone interrupted her, she was lost again. sitting with a stranger. I would start from the beginning. again.
brains are pretty interesting. she was ‘there’ in pieces. the pieces weren’t necessarily the good ones. my brain was here but not functioning very well. as a result, I was difficult and unable to care for myself.
now I have the after-effects. my marriage is in shambles, over essentially. my brain has returned as much as it will manage we believe. if I am tired, I cannot form sentences. my spelling ability has completely vanished. I was an english whiz, math whiz, science whiz. now, I cannot multiply. sometimes I cannot add, no matter how hard I try. I spoke 4 languages, I seriously struggle with my english today. it’s just the way the cookie crumbles. I’m mobile, I can drive and run errands and cook and garden. I am just a bit more diminished. that’s life.
last night I realized I don’t know a damned thing about skating. that was astonishing. my friend had gone with me as my guest years before. she evidently relied on my knowledge to help her understand the competition. it made me remember the first month I was here in Spokane, the championships were here (Skate America, I think) and I took my very best friend to every event all week. she was an athlete but knew absolutely nothing about this sport. so, I explained to keep her appraised. last night, I could not answer the most basic questions. that was stunning to me. I simply don’t know anything much about this sport I have spent thousands of dollars on for 25 years or so. I’m a newbie.
so, just like my visits with my mom, I decided to just be ‘there’. I decided I don’t need to be in charge, don’t need to know the answers, don’t even need to know the questions. I could just be there, with my dear friend, watching a program of great challenge and superior athletes. I had been here the month I moved to Spokane, and now, 8 years later, as I am making my plans to depart, I was here again, but a different person, in every way.
and it was ok.
This entry was posted on Saturday, January 16th, 2010 at 9:00 pm and is filed under fear, giving, in the moment, leading by example, loss, loyalty in relationships, marriage, necessity, sharing, timing is everything, trust. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.