For the last number of weeks, as I have struggled with my mom on my own (her caretaker was taking a much needed vacation), I have not had much motivation or desire to post on this blog. For those who have followed my reports of my mom’s alzheimers here, it won’t come as much of a surprise that her journey has become more treacherous and precarious. Whereas in the past she had moments of relative calm, peace, and near total clarity, now there are constant waves lapping up against her frail life. Most often the waves are rough, mercilessly tossing her about wearing and tearing on her physical health and also taking me for a sad, often desolate ride that probably is still no where as rough as her own because I have the capacity to maneuver and control my motions and reactions, in a way that she cannot do on her own.

At times the waves are really large, sweeping her entirely away. Other times, the waves small and choppy, causing nagging constant discomfort, but bearably so. More rarely we have caught and ridden some waves and have experienced moments of ease…

Since I moved far to Edmonton, I had not seen my mother for over 6 months, the longest period away from her in 3 years, which is why I came and stayed for so long (a month). And unsurprisingly I landed home to find my mom’s bridge between her world and the world of my experience, in a greater state of decay. She can cross the bridge or I can meet her halfway, but I am afraid it will soon crumble entirely given the very stormy weather. For example. the first 3 days of my visit, she asked for micah, who has usually come during the time of year… (and granted, who would not want him here..?) But after explaining that he went to see his family and was not in PR, over and over again, she finally got it. One day, she asked if I were her daughter, which of course, stung hard.

Alzheimers is known as a disease of the mind but the physical symptoms are trumping many of the so-called mental ones. In fact, she still has a joyful, almost childlike streak to her that when she is not in physical discomfort comes out for a visit with just a little culling.. She loves to joke and play and loves to express her joy and, especially excitement, when she is blessed with a good and clear idea (and I have some video of her excitement following her ingenious plans for my future career and I will upload the video soon and here is a photo capturing her vivaciousness). I am sometimes amazed at this outpouring. But it is hampered and sometimes entirely vanishes by her physical discomforts.

The worst of her her physical symptoms are due to her some difficulty swallowing, which causes saliva to accumulate in her mouth and throat. For some unknown reason (and I need to talk to her doc about this week because in her case drool, however seemingly unsightly and undignified is much better than her state right now) and because there is so much saliva that she does not swallow, she starts to choke and gag. She then spends up to 2 hours spitting and heaving in the bathroom over the sink, at times crying and wishing out loud with a lot of “oy, oy, oy” a short and quick passing away.

We have tried a few drugs but none have brought an ounce of relief. This week we go back to her ears, nose, throat specialist to possibly try one more medical intervention and also get a machine that sucks the saliva out her mouth. If this bring some relief, indeed, her quality of life will dramatically improve.

Otherwise, her emotional and mental life is marked my a mix of loss, desire, and a surprising drive to rationalize. Those things she has lost, like her baby son, are still with her, and I doubt they will ever leave. She also clearly still desires a better day to day life or much harder for me to hear is that she desires to leave this world.

One thing that has become pronounced is a hyper-drive to rationalize, which measured objectively, of course, may strike as quite irrational. For example, everything is “new” (the coffee at the supermarket, the bread that she now loves to eat, the streets) and many things are “bad” (when she does not like some meal I give her, she claims it terrible, infested with saliva). Even if this perceptions are incorrect from the measure of so-called objectivity, from the vantage point of her actual experience, in which the past is non-existent or hazy, in which many experiences are new, in which a meal can be experienced as totally lousy because face it, her life is lousy, well, she is rationalizing as you and I do too. And it is a reminder that while there may be some objective layer to life, this is mediated, always, by the the vicissitudes of experience, and this will most certainly texture how we form our rationalizations. And again, I am amazed that the inclination to place some order in her chaotic world is still here and I wonder if this will go (it seems awfully strong, sometimes frustratingly so!).

I too find myself needing to rationalize react, and recalibrate to and against and with the influx of rough waves that are also my reality, my experience with her, and and this ride has been especially trying, not only because she is worse but I was her sole caretaker for over 2 weeks. It is tiring, in the fullest sense of the word, in which the body needs more sleep (I would wake up with her a night during her horrific spitting-fests), the mind is frazzled and fried by trying to process so much, and the soul gets easily drained of joy and purpose.. Given her state of being (and knowing she is in no way alone) stormy clouds seem to follow me around in an otherwise sunny and tropical place. But this is nothing new for the dark clouds gather every time I visit and they do always seem to part given a little time…

Thankfully even within the storm, there have been some pretty amazing times here with family and friends, new and old (and one who came to visit…) and I will write a little more about those things here soon.. You know, to balance things out.

So it has been a long while since I wrote about my mother and her Alzheimers/posterior cortical atophy. The news is not all that good. Now that she has been under this state for a number of years now, I am finding more and more of my female friends are under similar situations of having to take care, sometimes from afar, of an elderly parent. This summer I got to spend a few weeks with a friend whose mother is also slipping away due to neurogenerative disorder. We talked a lot about our and our mother’s lives. One thing we agreed wholeheartedly about was that with these types of illnesses, the past takes on a new found importance as “easier times.” Once the present starts to arrive on the scene of life and extreme dis-ease, the past seem a lot rosier than before, because well, usually things only seem to go one way: worse.

You retroactively long for the past, though it was experienced once as quite difficult but you realize that it was better than it is now. While my mom’s memory problems have not worsened that much, she has a host of new physical symptoms that really cut into her quality of life, making the past seem almost idyllic. And once you go through one or two of the phases, you can’t help wonder, constantly, how much worse will it get? In leaves you in quite an unmoored state of low-grade anxiety, because you just can’t have faith that things will get better. You only hope that the things will unravel slowly enough so that the shocks are somewhat easier to absorb for her, for me, for my sister. And all of this is hard, hard to watch someone go through, and hard to know that in some ways, this can only get worse because you just know rock bottom has not been reached and you start to wonder what will rock bottom even be? But perhaps what makes all of it far worse is how my mother is treated by ex-friends, by doctors, by society at large.

To have Alzheimer’s, is socially deadly, it is social death. Once people know of your condition, people start to treat you as if you are not really there, no longer a person, no longer able to cognize or much less understand the world around you. And indeed, it is silly to deny the existence of severe new limitations. But once you spend enough time with a person with Alzheimer’s, it is clear that they perceive (and really feel) a lot more than one first may expect. It is a grave mistake to put them behind the barbed wire of invalidity and non-being as I think seems to happen, almost automatically. Memory and language are not the only conduits for cognition yet we fetichize them so much so as they pivotal markers of “being,” that when they start slipping, we seem to mistakenly think the entire person goes with them.

This marking of non-being is everywhere. Most of her friends and family have dropped off the face of the universe; when I take her to church, “churchgoers” will make sure she takes the holy communion but otherwise treat her as if she can’t understand at all, instead of trying to going the extra mile to share in the ways she clearly can, and then there is her doctor. He is the worst.

He just tends to treat her as some clay lump, putting her in situations that clearly make her feel bad but of course, his medical gaze can’t register it at all. For example, every time she goes in, he makes her attempt to “draw” some squares and circles and houses…. And I am not sure why he does this because she has not been able to do it for years. When he makes her do it (and she gives in because well, you are supposed to follow doctors orders, right?) she is clearly embarrassed that she can’t do it, so what is the purpose? To confirm what is already plainly obvious, and remind her in BOLD EMPAHSIS of a new limitation?

He is not overly fond of me because I tend to be well-informed and as result finds me annoying and threatening. Last time my sister took her to the doctor, I had her bring a list of possible medications that may help control her excessive saliva, which is one of these new symptoms that is ruining her life. Though they were taken as suggestions (not as demands) and because he did not take this symptom seriously last time, he told my sister that just because “your sister has a PhD, does not mean she knows anything about medicine.” And he is right I don’t in the way he does, but it is by being well-informed that my mom was diagnosed in the first place and how we have averted other problems. I guess he selectively forgot that it was I who brought in the Olive Sacks article from the New Yorker on Posterior Cortical Atrophy that directly led to her diagnosis (after 2 years of trying to figure out why she could not see anymore and everyone just treated her as batty) and it was I who finally figured out that one of the medicines he had prescribed, Razadyne, was severely aggravating her saliva problem (he apparently never took her first concerns over her saliva very seriously, otherwise why would he prescribe a medication with saliva production as one of the known side-effects)…

Finally look around you… People with Alzheimer’s are rarely taken out of their house, if they still live there and surely not out of the nursing homes where many spend their last years. In fact, when my sister and I take her out (and we do quite a bit), you should just see the look on people’s faces. Their eyes light up, I think because, it is a rare sighting, and they just can’t believe how great it is that we have SACRAFICED to take her out. It is as if they saw Mother Teresa, back on earth, in some great act of benevolence (ok and she is pretty cute too, especially without her dentures).

She has about 2 friends who do make an effort to keep in touch. One is her oldest friend from Venezuela, who calls at least every month and then the other is an artist friend, who lives in PR and has known his fair share of tragedy, and as result is perhaps more empathetic. When they call or visit, she is overjoyed. Of course. You can joke with her quite easily and she loves to tell stories (though she get really frustrated at times when she has problems saying words). Not only is it a nice distraction, a form of entertainment, a moment of connection, making you forget the pains, psychic and physical, that saturate your life under Alzheimer’s but it is also a powerful social and moral message. It states that you still matter, are worthy even as other forces in life are tugging away at your being.

To be more generous, I understand why some of her friends, especially those who are older, avoid her. Her presence is a powerful signpost for their possible future. It is easier to exist in denial than to be empathetic, patient, and have to at some level confront a very existential question about a future that awaits all of us. It is like a more raw form of Sartre. But this is perhaps the very reason why sequestering those with this condition is a grave social mistake. It is worth facing it, contemplating it some, otherwise it will be impossible to forge more empathetic responses.

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…

I have been in PR for nearly two weeks now and it feels like I have accomplished only 3 days worth of motherly errands. In fact, except for Sundays, I have been going nearly non- stop with her, and dealing with her affairs. It is just that things take a little longer here and more so over the summer when the heat is inescapable. I forgot what it was like to live, breathe, and generally move around in soaring temperatures. Actually when you are on the beach, it is delectable, because the only so slightly cool ocean waters vindicate the heat, entirely.

Otherwise, I languish. I think I languish more because I have been thrust into a role that seems somewhat foreign to me: adulthood. I guess I have long been on the path toward that enigmatic place we call adulthood: I got my drivers license at 16, at 18 I could legally drink in PR, I left home when I was 17, started to pay my own taxes when I was 21, now actually sort of understand my taxes, and so forth… I have reached my 30s. But the student way of life feels only at the cusp of adulthood, as if you put it on hold to pursue your personal desires, staying away from those signs and practices that place you firmly in adulthood, such as taking care of others.

But now as I take over my mom’s affairs, and her financial world, I am having to play some serious catch up to things adult: wills, taxes, funerals etc. It is a little overwhelming, and almost entirely unpleasant especially since my mom can sort of understand what is going on, but also sort of not. I try to make decisions that are right and explain them to her but there are times she just does not fully get it (although there have been times when she has given me crucial pieces of legal info out of the blue).

One of the larger current projects is re-doing her will because as the current one stands, there are some ambiguities that can cause us a huge, no gargantuan headache later on. So now, we are making a new will which will include a trust for my sister (who is not all that financially responsible) and this apparently is a huge headache to do. Ok, it would not be so bad if I lived here but I don’t. So I have meet with the lawyer a number of times, hammered out the basic details, and will have to coordinate the rest from Chicago/NJ and return in August for the signing. Since my mom can’t see well, we have to get five witnesses to proceed over the signing. The whole thing is a huge source of anxiety for me partially because I have to coordinate it, partially because the law seems so flagrantly obscure and obtuse (PR is also under Napoleonic code) and also it costs a lot of money. Legal services in general tend to cost more in PR, which is why there are a lot of really really wealthy lawyers in PR who drive some really nice houses, dine on fine food, and reside in luxurious homes, but I guess that is most places

It seems like at least every third person in PR is a lawyer and they have created a system in which they are necessary simply to avoid disaster. Much of the western “liberal” world is such (so much for legal freedom) and ss our lawyer said, “we don’t live under the rule of the law but the law of rules.”

So true…

It snowed again last night, the white powder changing the topography of the city. With snow, comes a short period of silence a retreat from the normal bundles of noise and action of cities, a calm that unfortunately lasts only a short while, the noise of the snow plows and salt come out, transforming the white into limp gray.

But even then, the city shines in new ways. The watery blue of lake Michigan vanishes, replaced by vast whiteness that invites an awed gaze. One night of snow changes the look and feel of vast city, it bring with it a new topography.

The current topography of my life is populated by small piles, mounds of stuff, errands, emotions, emails, bills, laundry that in the last few weeks I have not been able to fully address and thus flatten out of my life. It has been three weeks since I have returned from Puerto Rico with my mother, a month that felt like it far exceeded 30 days of experience, instead feeling more like two or three months of experience because of all the emotion that comes from the intensity of watching someone suffer, struggling to get through the mundane acts of everyday life.

But despite the intensity of it, I had to give so much of my energy to the basics of getting (her) stuff done that I filed away the rawness of experience into some small pocket of my self, deposited away for later reflection. There was no way I could deal with her piles, her life, and process my own reaction to what is a life under decay, unraveling, her fiery independence muted by visual and mental degradation. More than anything, I wonder how I can express my gratitude I feel toward her, a gratitude that comes from the realization that has grown from the experience of taking care of her, which has made me see, in the fullest sense of seeing, how she spent so many of her minutes, hours, that have added up to years and years, caring for me, making my life possible, minimizing my suffering when I was in pain and just looking out for me in ways that I were completely imperceptible to me at the time. Her suffering has awakened something inside of me which is a new found gratitude but one that is tinged by pain difficult to describe because it is inseparable from the sadness I feel over watching her slip away.

In the past I would have fired off a letter to her letting her know how I feel about things, life, us, etc. I spent years writing her and she too would respond with letters, which does not quite capture the magnitude of her first set of writings to me. After I left home, my mom’s first letter was more like a small multi-volume encyclopedia peppered with her thoughts about.. most everything. When I received it, I was 17, living in a small fishing village in Venezuela, on a ship undergoing massive repairs. Life was laborious, dusty, tiring, and just overall grungy but the freedom of life among sea people in a small village was still nothing but exhilarating. About 2 months into my time in Venezuela, I get a DHL package from my mom with about 50 days worth of letters. Apparently, she was writing me a letter, sometimes pages in length, everyday. This left me in shock, a rumble that reverberated through my body, undermining my weakest link, my neck. So after reading the voluminous tract, while my neck healed, I spent three more days on my back mulling over all sorts of things I had not really known about my mom, her life, her inner world. I guess my absence created a space by which she could tell me things that could not be so easily uttered via the spoken word, at least not to your daughter and especially when you had never had ‘that type’ of sort of friendship-like relationship before. We continued to use the medium of letter to build our thoughts and sentiments, crafting one sentence upon sentence, words chosen deliberatively, to express ourselves, in new ways to each other.

Now she can’t read and I seem to lack the ability to tell her the things that I want to. And I know that she also has trouble expressing the depth of what she feels but at this stage, words don’t seem as important as a certain type of presence, which is calming for me and I am sure for her. And that is what makes being so far away so hard. The phone does not cut it and when she tells me some bad piece of news, I can’t seem to offer some distracting piece of information or humor to make her, me, feel better. I feel somewhat stuck and numb and empty, talking to a metal object, hearing a voice I knew well, and telling me in tone and content that things are very tough on the other end. Well, in time, I am sure we will once again be together. In the meantime, I guess I will get back to those little piles of stuff, flattening them out, creating a clear silent space that maybe will be like the calm of the snow.

Yesterday, my mom woke me up with a shrill, a womanly shrill that I think the human female form acquires when women first bear children. Swinging the door open with a lush bravado, she shrilled “Sadddddaaaaaaaaaam fue capturadoooooooooo, he was captured.”

Uggggh, what a way to wake up on a fine Sunday morning, especially when I was deep in baby sleep, which I dont’t peaceably enter with much frequency, at least without the help of the little red or green or blue pills. Anyway, interesting news indeed no matter your war politics and since I had to wake up anyway as I was going to my mom to the Puerto Rico Centro Zen for some Sunday meditation in the hills outside of San Juan, it was not terribly annoying.

My mom goes to the center whenever I am here and this time she amazingly sat through the whole meditation period, not an easy feat for anyone and especially for mom whose ADD has become severe with the onset of her strange visual impairments caused by a rare type of alzheimers, posterior cortical atrophy.

More amazing though is that my mom is perhaps one of the greatest living contradictions known to middle and planet earth right now. We fought the whole way to the zen center that Sunday morning over republicans, democrats, the war, Sadddddaaaam, and such. She was yelling at me for being a communist because I am agains the war and I egged her on with stories that I painted my whole house red in honor of my “great” love affair with communism. Sigh, I can’t help myself but at least she is animated during those times. vSomehow after Sept 11th my mom converted into this staunch republican although she really has no idea about the American political system and in many ways she is quite liberal. I think she reacted so strongly to the Twin Tower attacks because she is a victim of war herself, living through WWII as a refugee from the ages of 5-10 in Western and Eastern Europe. She has carried the mark of fleeing her home, near starvation, and refugeeness since that time and in ways that are sad and at times frustrating too. She reacts very strongly to war and violent death as anyone would who went through the horrors of bombings and camps from such a young age yet not always in ways that are expected.

So, as usual in the last two years, we end up having this fight about America (I seem to always fight with each parent about the “merits” of America atlhough in completely different ways as my dad is armed with pure rationality and history and while my mom argues with pure passion and lots of historical errors), war, violence, terrorism, my mom advocating pretty conservative positions but then she will finish with a staunch anti-war statement (yet she faithfully supports “her” president though she dislikes his voice) and ends up meditating happily at a Buddhist center although I think she spent the whole time reciting some Russian Orthodox prayer she knew as a little girl.

My poor mom plagued with ADD and Alzheimers lives a jumbled life in such a purely raw and physical way but it captures so well her life of roaming, fear, instability, and sadly, tragedy. It is as if her whole historical life is congealing into her illness whereby her sight scatters the world around her into awful distortions of blurriness, enlargement, and erasure frustrating a person who already had a pretty frustrating life. The aesthetics of her illness matches her life in this perfectly sick way, so much so, there is a cruel and eerie beauty to it. But really I can’t admire the “beauty” of such a thing, I mean it is a reality that I can’t shun either and that I struggle so much to find some redemptive meaning in. And though I want to say it is all senseless and unfair she does carry some really full lessons within her life and now her illness if people are willing to listen and confront it.

It is not so easy though to do and I who have to see it in this daily way shun it more often than I should. People just treat my mom as if she is strange and alas she is but still she is fully there as a human who is going through what most of us will eventually experience, the degradation of life and our faculties. But she has to bear with it more than others, wearing it incessantly.

I used to study chronic illness and would seek people’s illness narratives. I can’t seem to go there with my mom right now. I already see her struggle I am not sure I want to sit and get another version of it although perhaps that is what she wants to do. Or perhaps she wants her mind off of it which is what my sister’s b-friend does for my mom. He is an anchor that erases momentarily some of my mom’s pain, which is wonderful.

Perhaps soon I will gather the strength to seek her story out if she so deisres… But in the mean time I will enjoy the funny contradictions of life my mom exudes while I am here with her.

These days my mom can’t do much that requires sight though she can see to some degree. It is strange, it is as if she sees but in a distorted way missing a lot of what is around her and just plain misperceiving things. She has always had a will of kryptonite so she still insists on doing stuff that requires sight, it just takes her a lot longer and she then puts objects in funny places. But the woman can still talk which she has always been able to do and now that she can’t do much else, she really goes full throttle.

Tonight she told a collection of stories on love. She spoke of the love between my grandparents in Russia which is a particularly tender and romantic story and then she told of her loves and romantic escapades which included that of my father. I really like the one of my grandparents because first of all, they were never married and he left another woman and his daughter because he fell so deeply in love with my grandmother at first sight. I know that is a raw deal for the other woman but those stories of undiluted passion are quite a treat.

Apparently, they had (or at least they thought they had) this psychic communication, thinking the same thoughts at the same time, many times over. I guess it was easier to connect in such a way without all this modern technology we have these days… The sad thing was that right after they met my grandfather was jailed by Stalin for 10 years. There you find the man of your dreams and he is jailed for a long time in a prison where there is a high chance of dying. A long time to wait, no?
(more…)

Now I know why there are less women on the web, blogging, and doing other cool shit–> Domestic Labor. I am here in PR helping out my mom who is sick with a rare form of alzheimers called posterior cortical atrophy. We did not know what was wrong with my mom for a long time and it was a New Yorker article by Oliver Sacks who writes about strange and rare neurological conditions that made us realize what was going on with my mom.

PCA is a form of alzheihmers (so they think because really it seems like so little is known about it in the first place) in which your spatial coordination is basically short circuited. She can see functionally but she cannot act and behave as if she can see because her sense of space and spatiality is pretty much warped.

It means that I have to do a lot for her right now although she has developed little tricks to help her get by. She functions a lot through memory, knowing for example that all the forks are in the first drawer. She has to feel around a lot for things and is oriented a lot by color which she already tended to love. It is sad though as my mom was such a spatial visual person especially in the last twenty years when she turned to art during her own mid-life crisis. A real tragedy for someone who already has had a pretty tragic life.

As I care for her (and she is still functional enough to do a lot of things on her own but can’t do some basic things at times, like use a phone), and cook and do some of the cleaning in the house, it has really made me see how hard domestic labor is. It is especially harder when you are supposed to manage the lives of others, usually a mother having to manage a lot of details about the kids, and other things like keeping up the house which is a lot more than cleaning I am discovering.

Frankly, I am wiped from it all and also disturbed from this experience of parenting before being a parent. Domestic labor and parenting are forms of labor that are so under-valued and kept well hidden as significant yet the world would fall to pieces if it were not for it. Wall street could vanish and life would go on. Care giving in whatever form is essential.

It makes me mad to think of of all the women who labored at home and never got much recognition for it all the while money was usually kept in the hands (or at least managed) by the supposed bread winner. One can win bread only if the wife is at home baking the damn bread or at least buying it and doing a lot more.

Also, working mothers who have no hired help at home probably have it way worse. I think that though men more than ever are partaking in the domestic sphere, women, by default take up most of the domestic slack. They just get fed up with having to hound a partner about help or feel at some commonsense cultural level that that is their duty do do the bulk of the work so they end up doing more of the house work.

Doing serious “learning” and “creating” type work, whether it is writing, programming, networking, music, requires chunks of focused time. Domestic labor and duties really take away from that sort of time that is needed to really delve deep into something. I am feeling the brunt of it now, tired after a day of like a million small little errands and cooking. Even blogging feels hard. A lesson learned though, that is for sure.