Unmet Expectations, Step One

Friday--PET scan

So, on arrival to the hospital he wants to ask where the place is. "There's a sign," I say, and set off. There is no need to make a deal of these things, or subject them to discussion; they are already enough. Too much. On our arrival at the check-in desk the check-in person says, almost singing, "I have a cute bracelet for you," reaching across the flat surface, placing the bracelet around his wrist, which he simply extended. His passivity annoys me even more than the check-in person's comment and tone.

It is beyond me why people in hospitals so often treat patients as if they have regressed to the age of 3 or 4 and are not simply ill. God help the person who ever calls me sweetie. Moving on...when the tech person comes to get him she has a cheery look on her face, one of those supposed to make the patient feel comfortable, although I find it rather ghoulish. I refrain from comment. "So, when should I get him?" I ask, figuring on the 2-3 hours outlined in the information sheet. "I'll have him ready for you in an hour," she says, teeth with the smile. "Uh, what?" I ask, "an hour? Just an hour? Are you sure?" And her face no longer looks so cheery, the smile is folding fast and annoyance  taking over, the kind of annoyance one has for a parent who can't make the mid-day school play because she works; the kind of annoyance that lets you are not doing the so-called "right thing."

"You look disappointed," she says, as if I have ruined her party by being insufficiently grateful for the quick release. "I had things to do," I say in a trying-not-to-be-too-testy voice, "but oh well. I'll be back," and the look she gives me lets me know that probably on some sheet or computer file somewhere, wherever family members are rated, I will get a black mark. At least one. Selfish? Uncaring? Self centered? Unsupportive? All of the above? Who knows, but this is only, I know, my first step on the bad family member road. Bad wife, bad spouse (and he is such a nice man). All because I am not what was expected: big smile, "great, I'll just stay here then, wasting an hour of what is probably the last warm day until July--and July if I am lucky--in the weatherless halls and waiting rooms of the hospital." Ooops, guess that is not quite it either. I feel like she is expecting me to greet him with a tray of warm cookies and a glass of milk. More likely I'll nip out and take some of my anti-anxiety medication with my coffee if I even have time for coffee now, because I feel like I can't breathe.

These expectations, real or perceived, are very, very stressful. Chalk it up to my Episcopal (culturally so at least) upbringing, stiff upper lip, carry on and all that, but the pressure of expectations EXPECTATIONS is crushing me. It is like a boulder pressing on my lungs, pressing the life out of me. After all, I am not really a bad spouse. On this particular occasion there was no real need for me to take him to the hospital, medical or otherwise. I took him because, specifically because,it seemed like a long day and he had come home from Santa Fe late the night before.And I had planned a day for myself that I was looking forward to.

The expectation that relatives of ill people will suddenly, with diagnosis or impending diagnosis, give themselves and their lives over to the fact of the illness is appalling and unreasonable. And that to not do so is more than appalling, it is akin to murder; just because one person in a family is ill does not mean that the lives of all of the other people in the family should or have to become that. Our social expectation that this is so, and that not doing so is "wrong," or "uncaring," or at least subject to disapproval is to negate non-ill family members altogether.

Why is this considered the only "good" and "right" way to care for a person in this society? Just because a person does not choose to sacrifice them self on the altar of another's illness does not mean they do not care. I do care. I am sorry my husband is ill. I am sorry for him and I am sorry for me and for my children, and sorry for everyone who cares for him. But my life cannot be about that, because then I would, most certainly, have the life pressed out of me. And I care for myself more than that.

PS--There will be more on this topic--for sure.

So here's the deal...

Okay, so I have posted a few times, but not so many (I hope) that the blog is incomprehensible. I think I can finally explain. There is something about explaining, about telling that makes things real, often even more real than they are and so this has taken a little time to be able to say.

It should be pretty clear that my life has veered off (of something, from wherever...) and become an unasked for off road event. Not that I like interstates, not that I can imagine ever using a GPS because I don't really mind being "lost," since some of the finer things in life are discovered when lost, BUT....couldn't there at least be a single sign, even one in the far distance, too far away to read even, a single colour in the landscape that I recognize, or one object on my tile floors that I know, know in my heart, and really trust I can count on to be where I left it when I reach for it? Just one, one tiny thing? Guess not.

When I started this blog, that is to say, registered it or whatever that is called, and put on a picture and prevailed upon my son to give it a name I didn't know what it would be. Not that I do now, so don't be misled. What I did know was that I had reached beyond, so far and way beyond the end of my proverbial frayed rope that I couldn't even see the strands. But, I was maintaining, and not too badly really.

At the time father-husband, as I refer to him now, was going off the rails, or so it seemed, and had been for some time. We were all exhausted, frustrated, angry and at a complete loss as to what to do. This was not all grim, mind you, there are many sort of funny parts if you have that kind of humor, and I do, and perhaps for that I should be thankful. Anyway, anyway. After all sorts of travails and adventures we got him to a dr and some testing, which revealed that he did not have a psychiatric disorder as we had thought--although the symptoms may be the same, so try to wrap your mind around that: he acts crazy but he is not--but an organic issue involving the frontal lobe, which a neurologist subsequently diagnosed as Frontal Temporal Dementia/Frontal Lobe Dementia. Not a good thing, not at all. All of the symptoms that had crept up over a series of years (me obsessing over trying to figure out when, precisely when it all started, to no avail) and finally reached a critical point now made sense. Not depression, not just being a jerk--FTD or FLD, characterized by personality changes: anger, inability to see the effect of behaviors on others, increasing detachment, lack of affect, and it goes on.

Does a diagnosis change anything? Maybe outcome and trajectory but not the immediate. No. The behaviors don't change, the effect of those behaviors on others doesn't change and so it goes.

And so goes the blog. Funny that it is "star-crossed," which, until I recently looked it up, I thought had a positive connotation, a sense of fate, and other worldly karmic meant to be-ness. But no; I found out recently that it means ill fated. That may be, but I prefer my definition, however faulty--or not. (I don't give in easily) Perhaps this "salvage," whatever it entails, will result in something. But for now, and maybe for always, since I have never seen myself as a results person, Star-crossed Salvage is a search and sort through disparate pieces, particles, shards and shreds. It is a story of an unintended off road trip, not always comfortable, and unmapped. Because it is off road it is not linear, and not consistent: a smooth area may at any moment turn into deep sand, snow, a boulder field or a ditch. As for the stars? Stars sparkle, they are distant and seductive, they swirl and are deceptive in their light when we look up at them. And we wish. If we look hard enough we will see the space where our fact resides, or so we like to believe. And we think that if we look hard enough we will discern it. I hold no such illusions, but perhaps secretly, that hope.

So that is the deal, so to speak, and here is the blog. Star-crossed Salvage. I am looking around but I don't know what I will find, and thus, not what I will write or will be read. I love off roading, but not so sure about this trip. Usually there is a plan, a destination of sorts, but not this time, and that was not my choice. Nevertheless, here I am and as I said, those stars are deceptive; they promise insight, but there is no telling what they will deliver.

Box Canyon

There is no way out of this box canyon.

Someone put a lid on it and the mouth is filling with water. I am not sure  how quickly, but most assuredly the water will come right up to and beyond where I stand. On reddish sand that crunches beneath my boots, next to a cactus with long spines & a greyish green plant with feathery dry leaves and brown stems.

Frozen in an attitude of movement.

The plant grows. Swept up against a rock and across it, brown trunk contoured to the planes of those grey hard surfaces, leaves splayed away from the direction of the water that once flowed over it under it and around it, leaving memories of eddies and whirlpools. Small violences.  Needled foliage like so many small outstretched fingers splays beyond the roots.

And I fathom the plant's near drowning.

Trying--in the wake of that liquid onslaught--to hold on. To the world it once inhabited & find a stability other than sand and roots and a reach for the sky.

There is no way out of this box canyon.

But the walls are warm and textured, and the sun filaments dusty pink flowers stretching into the breeze.

Measuring Life

Deaths, I would have told you, measured my life. Was it before C died, or around that time? Wasn't that the year R died? And indeed, deaths have punctuated my life like irregularly spaced holes in a belt. Friends, most of them, the first died when I was six and so was she. One for every decade. Good friends, five decades, five friends.

But yesterday, walking the dogs across a grey and cool fall field, I thought that perhaps it is in fact dogs that have measured my life, provided those intervals for memory, tick marks of passage. There have pretty much always been dogs, and they have always given comfort and do now. When needed most a dog will lie still and allow a tearwet face to bury itself in  her neck, will look worried and lick a face, and will allow a person to lie beside them, face to face, breathing the same air. They always know, dogs, they always know and they are always compassionate.

Silky, the lab pye dog we got in Calcutta (I arrived home from school to have a servant say, "Baba, mummy brought one e-small dog. Black." and I ran upstairs and running around the table was Silky, her curly tail wagging.) When my parents were unfair, or so I thought, I would take her to my room, "Come on, Silky," I would say, putting my arm around her and we would lie together on the bed, me feeling as if she were my only friend.

When my father died there was Kali, a daschund, the second, Lizette had joined Silky in our Calcutta house. Kali liked to have her head on the pillow, and she was small, but could sit in laps and lick faces in times of need. She was there for an extended period of need, and never failed those who sought her out for comfort.

Toto, a Chesapeake, was there when my friend R died. Not a characteristically demonstrative dog, she let me bury my face in her neck fur and cry all I could cry. Her compatriot, Chloe, was good for the same, and so they absorbed some of the pain of that loss until I could not stand to feel that pain any more.

And so now, as I feel so sad, so very sad, and as all of those past losses roll together like a slow wave with this newest and so very present loss three dogs are there for me. Wiggles with his worried face; his sweet brown eyes look into mine begging me not to feel so sad, and he licks my face, watching me all the time. One evening this summer I took him out to the pond to swim, but instead he ran around, kept getting back into the car and out again, coming over to lick my face as I cried by the edge of the water. Hot Scotch, the newer Chesapeake, lets me hug her and rub her back, and she twists and turns with infectious happiness, and gratefulness that she was rescued and she is loved. She then jumps up, her golden eyes looking into mine and runs off. Who could not feel better after that?

And then there is Georgey, the bull mastiff who acts like a toddler usually, but when tears are present he lies still beside me, and I put my arm over him, and he is warm, and his nose breathes onto my face, and we breathe together, and fall asleep, often sharing a blanket on the sofa, and we sleep, and we are at peace. He for giving it, me for receiving it.

And so, I see my life measured in dogs. Better dogs than deaths, most certainly, and such certainty brings them into the present, all those dogs, here and gone. And that is a happy thought: A life measured out in dogs. The dogs would want it so.

Constancy

Ahhh, so if you look over there, right there on the floor--and be careful of the dust, it will shred your soles--under the scrap of green silk, under the scratches on the table where R and I drank Ouzo and danced in high heels, yes, just there, on the Calcutta marble, that is Baby Cousins.
Baby Cousins is my oldest and most faithful friend. I don't remember the day I got him, or the day I named him; he has always been there and he has always been mine, and I his. He was and is always the perfect size. In fact, he is perfect in every way. His tiny sock body was held close to my heart, and under my chin through heart wrenching childhood moves, parental slights and the meanness of brothers and girls. He went on all of my trips, I think, traveling with me across several continents, the softness and smoothness of his little self always in my pocket waiting for my clutch. A well educated fellow, he went to college and grad school.
Baby Cousins has been there for every death, his small self absorbing tears and sobs, and kisses. And he is with me now. He has always fit perfectly in my hand, although I have been told that as a very young child I carried him in my mouth.
He has suffered too, my beloved Baby Cousins. A dog chewed off one leg and both arms, and his nose is but a pit, much like the leper on Chowringhee Boulevard in Calcutta. Whenever we drove past that man my mother would say, "Oh, look at that over there," pointing out of the window opposite the noseless beggar. That was, of course, our signal to look at him, hoping to see what, just exactly what, was inside that dark hole where his nose had left a vacancy.

But Baby Cousins, like all things loved, is perfect. He still fits in my hand, and can be squeezed to my heart and under my chin, and he will, just as he always has, absorb endless quantities of tears and remind me that there are some things that really are always there, even if they look a little different. Maybe it is those treasured things that remind us, if we let them, that things will be okay again even as life lies in splinters. And that is what we hold on to, for knowing that fits just perfectly into a palm, can be pressed against a heart and perhaps even fill it.

Wishing for an Ordinary Day

My wish is for an ordinary day. Just that. An ordinary day. One of those days that goes by without comment, and without remark. A day that does not begin with a strange sense of not wanting to push toward awakening, followed-- before it can be redirected--by the ambush of realization that there is something terribly wrong, that life has taken a really, really bad turn. Oh, yes. My life feels empty. It feels so empty and I am so sad and so angry and to say it all hurts is to diminish what overwhelms. After all, how does one deal with a husband who has been diagnosed with dementia, a terrible type of dementia, no less. All that is "new" here is the diagnosis, the words of the neurologist, who said, "frontal lobe" and "dementia" in the same phrase. Three small words, words that don't change the reality of the past, oh, three to five years of living with a person who slowly withdrew, who got angry more frequently, and more angry with more frequency. The person who once laughed often laughed less and less until I realized he did not laugh any more. When was that last laugh and why do such things always pass without notice: the last time a baby breastfeeds, the last day that same child or another is toothless, the last time a puppy smells like a puppy, the last day of all green leaves before the first one turns in the autumn. These things happen without notice, and yet they are the monumental things of life. Really. These are the things on my tile floors covered with debris that remain intact, small and beautiful and perfect, only I can't find them, no matter how hard I look. No, those three words do not fill the infinite emptiness of my life that is lived alone, and do not restore the hopes and wishes and expectations I had for what my life would be, or who I would be right here, right now. I would give the proverbial "anything" for an ordinary day. A day where nothing happened, but everything did, and the entirety of it passed without notice.  A day like that would be a gift so wondrous that when one comes my way sometime again, I will take note. But I doubt that I will notice the last not ordinary day, and this time will pass, its passing unremarked upon, and sink below the horizon.

Tile Floors

Here: it is, my life. In shards and pieces and scraps. Some the size of two cupped palms, others atomic dust, scattered all across the horizonless floor. Look. The floor will change as you survey the wreckage.  It is the grey and white marble veranda floor in Calcutta, the beige kitchen tile in Belmont, my red Mexican tiles in Vermont, high gloss granite in O'Hare, the clear glass of an elevator...all the hard floors I have ever walked. Hard floors where things that fall shatter and scatter and splinter and turn to dust. Always the dust. And then comes the wind, or the sometimes someone who scoops up some of the pieces, places them on a blanket, gives them a toss and leaves them to fall back down in different places. So then I have to check and check again to see what is where, if what was intact still is. And that is exhausting.

There is no direction in this vertigious, ruined landscape. And so I am lost in a tale of what has gone before, but even that is subject to the faults of lone memory; memory as untrustworthy as thin ice covered by snow. What looks smooth and inviting will take you down and trap you and you will suffocate. All in an unnoticed instant.