Not abandoned

I have not abandoned the blog. It has been a very long month or so, culminating, sort of, in a visit with the neurologist on Monday. In short, the PET scan confirmed the diagnosis of Frontal Temporal Dementia, and the doctor talked a bit about that. No treatment, no reversal, no slowing down, no idea of how far along this is, and no idea of what the prognosis or trajectory will be. Nice. Real definitive.
The month preceding this appointment was truly a house of mirrors, a month of shifting floors underfoot, unexpected pitfalls and traps. Very difficult, and will be described in subsequent posts. Living where another person constructs a reality for everyone around and keeps trying to draw them in with insistence and seeming logic is a mind bending experience. Keeping my own psychological ground is exhausting.
Signing off of this brief update to drive through a grey so very November day.

Uncertainty

PET Scan Friday, Sept. 24th, follow up appointment November 16th--6 weeks. RU Kidding??? 6 weeks???

Note: I do not do well with uncertainty. Whatever there is, I like to know; I like to at least think ahead, even if things change. Thinking is doing. I don't like having what feels like a void surround me--if one can even be surrounded by a void--so the fact that the next appointment--the appointment at which information about some sort of something will be imparted--is 6 weeks away is excruciating....it is like this...
Life without boundaries is not a comfortable state.
droves of  leaves fall from trees
swirling in updrafts before giving over to the inevitability of gravity
dancers felled mid pirouette
they scatter on late year grass and gravel roads,
tribute spread before emperors.

Yet, I am completely unable to picture next fall.
(a year from now, so much can happen in a year)

the first snow, first hard frost, first tentative ice in the stock tank,
even the end of the day tomorrow are unimaginable.
no, not quite. they were once certain but are now obscured, and even assurance of the inevitable is unconjurable,
as if I lost the ability to see ahead or to even know that there is something ahead.It is like reaching out to feel a muslin curtain only to have it dissolve between finger tips and blow away. dust. dust so fine it can't even be felt.
looking out through water on a windshield in a heavy rainstorm
waves and tones of grey shot through with occasional flashes of red and yellow

fall was crisp last year,
the winter all blue and white and not too cold
good snow
full of laughter that continued into spring
a reality based in thinking that things seen were things known
(a year ago, so much can happen in a year)

And so, here I am now, waiting and waiting and waiting for what? For answers, for something that will tell me or at least hint at the length of this road. I want to know how long it will take for him to dissolve entirely, and how much of him is gone. I realize that will not be given as an absolute, but something is better than this absolutely nothing.
There are plans that must be made, things put in place. That can't happen without some sort of guide as to what lies ahead. At some point he is beside the point. Where there is little to nothing that can be done, and things will progress as they will, it is more about the rest of us than about him; we can change us, we cannot change him, or affect or alter his situation. That is why I need to know something.....so, Wednesday I called the neurologist's office and asked them if they could please give some information about the scan before the visit even if just an outline. The nurse called back quickly, and the doctor the next day. I was not here for the call, but at least there is something that will come rather soon. A much better feeling than seemingly relentless unknowing.

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.

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.