Kevin's card

Just 5 short years ago, my mama graduated Summa Cum Laude from university, and no daughter has ever been more proud. She did it on her own, and did it well.  Last week, she sent this note to one of my brothers. There can be no clearer evidence of just how much this disease is stealing who she is and how she functions.  This is the woman who read to me as a child, not children’s books, but Tolkien, Lewis, Asimov, Herbert, and more.  Who taught me to read before I even made it to pre-school.  Who instilled in me a love of language and the natural world.  Today, she often writes, reads, and speaks like a child or someone struggling to learn English.

Its so incredibly hard to explain to others the depth of what’s going on, and in some ways even harder to wrap my own head around it.  You spend your whole life seeing your parents one way- the way you did growing up.  I don’t think you ever really expect them to stop being self-sufficient or more full of life-experience and wisdom than you are.  You always expect them to be the ones you go to when you need advice.  Watching my mom so rapidly change into someone who needs our frequent guidance, who writes, speaks, and even behaves so much more child-like, is deeply saddening.

There’s an incredible bi-polar pull on my heartstrings.  One half of me carries a fiercely protective instinct toward her, just as I would with a child.  The other half of me both resents that I need to take care of things for her and fears that she hates it, too.  I would; in her shoes I’d be so, so very angry.  And I know her- she’s always been so independent that the idea of being watched over and policed all the time should be maddening.  It doesn’t seem to be, though.  So far, she’s been… passive, distressingly so.  That loss of confident autonomy is just as sad as her loss of language.

I suppose the plus side is that, so far, she seems not unhappy.  With any grace, as this disease steals her cognition of language, it will also steal her awareness of what she is losing.  While that doesn’t make it easier for those who love her, knowing she’s not suffering the same heartbreak would be a relief.