January 11, 2006

The Return

Category: Alzheimers — @ 3:29 pm

I have returned back to New Jersey. I would not exactly call this a return home either. Since I have been here for only 3 months and in all likelihood will leave in another 6-9 months, this place for me is transitory and transitional. I did return, however, from a place that in many respects feels like some type of home, Puerto Rico. And I usually get that sense of visceral familiarity when I fly there because the last 6 minutes of the flight serve up one of the most familiar landscapes of my life. During the descent into the airport I recognize nearly everything. If I fly during the brightness of the day, the green explodes amid a concrete jungle bordered by the most beautiful of blues: ocean blue. I know neighborhoods, stadiums, streets, and even buildings well. At night, the architecture is a little harder to decipher but I can still make out some of the larger landmarks that are surrounded this time not by billowing green but are bathed in glittering yellow. And for those who may not know, San Juan is an incredibly populated city so the lights are simply stunning for such a small Caribbean island.

This year, though, I returned under slightly different conditions. After a fairly intense week, I flew home at 11:00 p.m. and landed later than I ever had, pulling in a little short of 3 a.m. Instead of encountering a familiar explosion of glittering lights, I instead viewed a subdued geography. There was still a grid of lights but now there were discernable patches of darkness. The island and her many inhabitants were in slumber, the usual life of the city dimmed.

I had just been in Puerto Rico in September but during this short time much has changed for my mother who is ill with a peculiar form of Alzheimers, commonly known as Benson’s Syndrome. The most noticeable symptom is visual disturbance due to the atrophying of her visual cortex. Though not blind, she does not see the world as you and I do.

Much in the same way I saw PR that same night of my return, dimmed, my mother’s spirit has also dimmed. She has always been quite fiery and well into her illness, she was asserting her independence, in every which way and often in ways that put her life in daily and direct danger. Notable among these was walking every day to an open air market, by herself even though she had to cross these busy streets. There was nothing I could do to stop her so I just sort of hoped that she did not die a horrible death on the road. Miraculously, she was never hit by a car but about 2 weeks before I came home, in one week she did get lost 3 times and finally gave up her daily sojourns that asserted as much that she is still an independent human being as much as it was a simple trip to the market. I was shocked that she stopped.

She is now living betwixt and between, sometimes edging closer to childhood and other times acting like the adult I am more familiar with, giving me sound advice about this or that. More so than times past, she was frustrated and on some days it took little to no effort to say or do something “wrong” which would send her spiraling into one of her intensely bad moods. At the same time, it also did not take all that much to send her in the other direction, reeling in such a state of laughter that tears were running down her face.

She lives in a state of volatility. She is a little like a semi-broken & unpredictable machine that sometimes completes its job and other times careens out of control, a flurry of sparks and smoke billowing out of the otherwise calm hunk of metal. And this volatility is in part follows from having to react to a world that seems so volatile. One day she may be able to see things relatively normal, the other day, nothing is where she thinks it is and worse, I may look like my sister, dog, or her priest. At times, this is funny for her, other times it is depressingly frightful. It would take one hell of a lot of zen-like patience to battle against her visual environment, especially since she suffers from other ailments like memory loss and aphasia. Everyday must be lived day-to-day and it will always likely be at least tinged but often deeply seeped in struggle.

More often than not during our conversations my mom returned to the subject of the past. Her parents, living in Venezuela, losing her baby. One day when I was in the mall with her, an older woman pulled me away from the clothing rack and said “she is talking about her past, isn’t she? My mom was just like that too.” I guess this is common and have heard such. Perhaps when you know that your future is so bleak, you return to more sure and comforting places, like the past.

And this is where she seems to be heading, back into a state of dependence and infancy, where she will soon have to rely on others for all her needs. Going from dependence to independence, she now will return back to another state of dependence. It is of course not a return to the same place because we never can go back to the same place twice. And this is in part because she and I and many others are so painfully aware of this shift in a way that a child rarely is. It is rougher transition, because in essence, one has to relinquish the forms of freedom one has carved out for oneself. Once you have it and taste it and as my mother did, relish in it, freedom, whatever that may mean, becomes extraordinarily difficult to let go of.

My last day of my visit, my mom and I usually are not donning our best moods. I am terribly sad, tears wetting my face, which luckily my mom can’t discern. My mom usually starts to rebel against the woman, Milagro, who normally takes care of her. On this particular day, my mom was sitting on the couch, unusually quiet. Then out of the blue, she starts to semi-apologize for how she treats Milagro but explains to me why she no longer wants anyone, especially her, to cook for her. She asks me “Do you know what it means to be free??” And went on to explain that she always always lived “free as a bird” and she should not be forced to eat someone else’s food.

I had never heard her talk before about her freedom, or even admit that she did things, like refuse food, as an assertion of freedom. And it makes one wonder about the line between self and body. Her body is failing her, trapping her self into a state that does not feel right, that robs her of freedom of being and movement. Now, her freedom to choose, even if it seems against her interest, comes to be the only freedom she seems to have.

I am not sure what I will find when I return but I am sure things will change so as to shift the balance between her independece and dependencem, between her adulthood and her childhood, between her sadness and happiness…

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