sharing magic.... 'In the Absence of Words '

Life is full - not all bad, not all good - and I have so little time that blogging does not often cross my mind these days. You do, you who have been faithful, but blogging is just not climbing into the priority range. But there is time for this. A friend on Facebook (proof that online friendships can be as compassionate and deep and caring as any other) forwarded this piece to me.

Thank you Elizabeth. I love you Mom.

In the Absence of Words | EOAGH:

the long ones

There are days, with dementia, when good memories abound. When I visit Mom, almost all of the time, that’s the case. We're very lucky so far. She doesn’t put together my visits into any kind of continuum very well, so every Monday and Friday the visits seems a bit like a treat – like I haven’t been around for a long time – and the good will ensues (there is a lesson to learn in this, I think). Lots of love, lots of nice memories, smiles, laughs.

But not always.

some days are better than others

Yesterday was nearly a perfect day. As nearly as I’ve had in a while, anyway.

Today was pretty great too, full of late lingerings in bed and hikes in the snow, but there was a mishap on the other side of the bridge that backed up traffic for two hours, a retaining wall, a brand new one, collapsed at the sight of a new overpass. That meant that I couldn’t go to aikido this evening, which sucks. Of course, it also meant that I had time to come here, to a favorite haunt, get a pot of green tea, and write.

So see? That silver lining shit works sometimes.

random check-in

Wow, it’s been a while.

I’ve been a bit confounded by Mom lately, just making sure everything is up to date, chasing clarity and clarification. Truth is she’s doing okay right now. She’s settled since the last couple symptomatic episodes and we’re basking in the eye of the storm for the moment.

Also I was, I think, desperately missing the manuscript. I spent some down time, while I was waiting for beta advice to come in, working on a synopsis (I may actually hate them, synopses, for all the magic they take out of a story), starting the second volume of the saga, but they felt like cheating, like I was being unfaithful. Or maybe it just felt like hubris, as if I was presuming too much. Finishing the first one, making it as shiny (or gritty, as the case may be) as I can has become (appropriately?) a holy grail of sorts.

Anyway, I got the beta critiques back last weekend and started on revisions, possibly the final round before I actually consider it ready for agents to look at, and the clouds broke as I began. You’d think I’d learn.

…

About Mom, one of the things that got me down was the thought that diagnosis of degenerative dementia, probably like any degenerative disease diagnosis, is essentially a call to start grieving now. It’s a time bomb with no counter – it’s just going to go off, a bit at a time, until the final big boom. And there’s not much you can do about it. We can only work hard to try to stay in the moment. And sometimes, often even, that works, mostly when we’re together and laughing and talking. But there are the quiet times and, in the silence, sometimes, the idea of a clock ticking down feels a bit overwhelming.

It’s all the journey though, right? Good goes with bad, darkness with light, the bitter makes the sweet taste better.

…

I was thinking about how it’s our cultural nature to make things as difficult as possible. We create our society based on the square, fighting nature. We make things straight and hard, all roads and stairs and sidewalks, doors and walls and ceilings. Even when we absolutely have to bend to accommodate nature, the goal is still to minimize the incline, reduce the curves as much as possible, tame the topography.

And then I thought about hiking, being out past the manicured paths. Out there you follow the line that makes the most sense, often following in the footsteps of animals. The lines aren’t straight, nothing is manufactured – it’s organic, and logical in a way that only the wild can be. Intuitive.

And hey, when you find a pause on the path, whatever the reason, the view tends to be fucking awesome. Double rainbow awesome.

P.S. Don’t you love how rioters in the UK are either all stupid, selfish looters and hooligans, OR all politically marginalized and disenfranchised citizens expressing legitimate rage? Why don’t they use AND in that equation? How can they not use it? How stupid does one have to be to not see that there’s legitimate rage AND selfish violence in the dynamic? And why is the UK so goddamed different than Egypt or Tunisia where the frustration was lauded?

P.P.S. I’m reading Jennifer Egan’s A Visit from the Goon Squad this week. And loving it. It’s as brilliant as a Pullitzer winner should be. I read Neil Gaman’s American Gods last week (AG was on recommendation from Judy Clement Wall – how did I miss that one?) and loved it too. It’s been a helluva good book month so far.

aftershocks

So, the story goes that Mirm went out to do a couple errands. While she was gone Mom became anxious because of the stranger that came into the condo. It was the stranger that Mom asked to leave last Wednesday, even though it was Mirm that asked, and Mirm that went for air, and Mirm that came back.

Today Mom called to ask if I’d come into the condo briefly this morning. She was sure that she saw me, but I was at home and Mirm confirmed that I didn’t, and Mom was disturbed by the dissonance. Hell yeah, it disturbs me too.

Depending on the online resource I tap into, these are symptoms of either late stage five or early six, but I’m no doctor, and it’s pretty obvious that the symptoms are a bit interchangeable depending on frequency, severity, etc. The bottom line is that it’s both as bad and not as bad as I’d thought. One of Mom’s medications was changed, or rather her schedule for taking it was changed, and there’s at least a reasonable probability that these symptoms are related to that change, to the affect the change had/is having on her stress levels. The rest of the time, most of the time, there’s little change and the treatments she’s on have mostly arrested the progression for the last year. It makes me more thankful than ever that the life inversion happened when it did.

Mom’s stress jumps now when Mirm has to go out; when she’s alone for any amount of time. It’s like she looses her tether to the now when she’s alone and, in the absence of the anchor that company provides, her anxiety rockets – the panic of sudden confusion, as if abandonment were perpetual and unavoidable.

I don’t know, maybe that’s part of it. Maybe I’m out to fucking lunch. Trying to imagine this stretches my somewhat considerable imagination, and I know that I’m simply not able to actually get it. Selfishly, I hope that I never do, not completely. I’m also in active denial regarding the stage descriptions that I read online, especially the timeline they provide for progression. I hate time today. Living in the now is the only strategy I can respect at the moment.

On the positive side, this all has nothing to do with Mirm. She remains a rock; a laconic, stoic one that I have to drag admissions of simple humanity from, but a rock nonetheless. So I‘ve scheduled an appointment with Mom’s outreach nurse for a week and a half from now. To talk about options, resources. They aren’t ready for me to move in to help, reluctant to give up the freedom they’ve carved out over the years, and I respect that. But Mirm, as tough as she is, is still 81. Hopefully there will be someone that can come in so that Mirm can do her errands, walk the dog, get some air, and still have someone there to provide that tether for Mom while Mirm is out.

I have to look out for Mirm seeing as she’s never been very good at choosing herself over Mom. If she’s not going to look out for herself, and she won’t, then someone has to look out for both of them. That only seems fair.

Or maybe nothing seems fair, but it is what it is.

tremors

Mom called this morning to tell me that she was having some problems with her memory. She wanted me to know. This happens once a week or so, and I can literally hear her blush like it’s a dirty secret. Every time. She’d just finished a big talk with Mirm, the kind that I think takes place more than I know but that Mirm simply doesn’t talk about, where Mirm explains the last couple years, and decades, to bring her up to speed.

This afternoon Mom called again to say that Mirm had left. Mirm had apparently walked into the bedroom where Mom was playing solitaire on the computer and asked if Mom wanted her to leave. And Mom said yes. She was calling me to tell me that she was okay. She thought I should know. That she’d stay at home. That everything would be fine.

In my head I was already making plans to get there, to move in right away. And at the same time I was spinning, trying to figure out what could have happened, what Mirm might have not been saying, wondering how it could have gotten so bad, mentally rearranging my life to make room for taking care of her full time.

The world receded a bit and my ears started ringing. Around fifteen minutes later, the gears not really meshing but the engine revving at high speed, Mom’s name popped up on my phone again.

It was Mirm. The aforementioned conversation apparently took place, although I still think I must be missing part of the context, but Mom had told her that she’d called me and Mirm wanted me to know that she’d just gone for a walk with the dog. Just for a bit of air. She said that everything was fine, that she would never, ever just leave like that. That everything would be okay, but Mom was having a bit of trouble this week. Maybe with some changes to her medication. Maybe.

The truth: It might not be a thing that we can fix with an adjustment. It’s a degenerative disease. There’s a progression that we can’t avoid and this… this might be that and not a reaction to a change in regimen.

We are such fragile things, and yet so tough, sewn together from bits and pieces, scenes and fragments of scenes, scents and colors, faces and eyes and the brushing of finger tips. I often despair a little bit, sometimes more, at the thought of Mom drifting away until she doesn’t remember me, doesn’t remember herself. That is the decline that most terrifies me. If I was deaf and dumb and blind I know that I could still tell myself stories in my head. But to lose that… That scares me shitless. I don’t know how she does it.

When Mom called to say Mirm had left, completely convinced that it was forever, she sounded so settled and sure. She reminded me of the woman who made the strong choice to send my Dad away so he could (or could not – they couldn’t know what would happen then, after all) get his own shit together, and so that she could keep herself and the little boy I was safe. There was no tremor in her voice, and I could only hear the fear way back behind the words she was saying.

For that moment I saw her face young again, as I imagine she expects to see herself in the mirror many days; a younger her, resigned and yet girded, prepared to survive whatever came next no matter what. What must it be like to receive that shock every day, to look expecting a face that matches the memories she has left  and find, instead, this woman that has seen so many more years.

I can’t help but wonder when the moment will come that I tell her I love her and it’s the last time she knows what that means. I’m not sure I’ll be strong enough for that moment.

There are new conversations to have now. There is Mirm to consider too, after all. It’s time for more honest talk and, perhaps now or maybe soon but unavoidably, hard decisions. And this too is love.

Fragile things, and yet tough. Everyday miracles, every one of us.

go figure

I visit Mom on Fridays, make dinner, give Miriam a night off from cooking and cleaning duties. It’s a tradition now.  Yesterday, Saturday, 24 hours after I left for work on Friday, I got to my friends place after work and turned on my computer to find three e-mails from Mom. The first read:

Hi Mike would you please come home and visit me?  Love you, Mom

The second:

Mike please get in touch with me I want to talk to you. Love, Mom 

And the third:

HI MIKE, IGNORE MY OTHER EMAILS. I AM FINE. TALK TO YOU LATER. LOVE YOU, MOM

Naturally, I called right away. Miriam had left to get something from the store, something that they couldn’t wait for. Mom prefers not to go out, so she stayed at home.

And then forgot that Miriam had left, forgot that Miriam lives there, forgot that she wasn’t actually alone at all, forgot pretty much everything. The thought of what that would be like makes me cringe.

This morning I woke up to an e-mail from the UK, from my Dad. He’d received a troubling e-mail from Mom yesterday too, one desperately asking him to come home because she was alone and needed him. They’ve been divorced for 27 years, of course, and the tans-Atlantic flight is a serious commute, but in that moment…

Well, she just felt alone. Utterly, completely.

There’s a disconnect that I don’t comprehend in all of this. It defies logic. She knew to e-mail my Dad because he was far away, used a computer that she can barely turn on and e-mailed me too, three times, but never thought to pick up the phone and call me even though the number is by the receiver. But I don’t think logic has much to do with ALZ or that kind of fear - that sense of isolation even if it isn’t really the reality. For her, then, it was real, and she was at the computer, and she just reached out, pleading.

When I called her, everything was already back to normal, whatever that is. Miriam had returned (she’d only been gone twenty minutes), and Mom was re-centered. She’d just needed a prompt to put things back in place and regain the semblance of a perspective on her world. We’d be lost without Miriam.

I thought, What would it be like to lose your whole world in less than twenty minutes? That made me think of Japan, Libya, Bahrain, Yemen, Iraq, Afghanistan... It was a somber evening.

When I got up this morning, after I sent Dad an e-mail to let him know that everything was okay (whatever that is), I found this, a quote posted by a yoga-instructing friend on Facebook:

‎"What if our religion was each other ~ If our practice was our life ~ If prayer our words ~ What if the temple was the Earth ~ If forests were our church ~ If holy water - the rivers, lakes and ocean ~ What if meditation was our relationships ~ If the teacher was life ~ If wisdom was self knowledge ~ If love was the centre of our being" ...Ganga White

It made everything a bit better - that thought, that big wish. The tragedy in Japan is creating a new, renewed appreciation for the most admirable aspects of Japanese culture. In Egypt, over 70% voted for constitutional change in a referendum. And there are people who think of and write giant wishes across the parchment of our world; ones so big that they can have a life of their own. And there are friends that can make losing the whole world better with just a few words.

In Hiroshima, the first springtime after the bomb, green things grew where nothing was supposed to grow for fifty years. Today Mom’s having a great day.

Go figure.

all these moments will be...*

So my dear Mom, fresh back from a road trip with her BFF (she's feeling that good these days - modern medicine has its virtues) is telling me about all the friends she was able to see at the holiday trailer in Harrison. One of them, Jane**, a woman about her age, is apparently having some memory issues herself.

Not able to remember that she, too, was feeling pretty anxious about it herself up until 4 weeks and new meds ago, she says, "And poor Jane, she's having such a hard time with it." She smiles and laughs like Jane is somehow just missing the point and I have no heart to bring up people-in-glass-houses truisms.

"She's so embarrassed by it," says she, my indestructible Mom. "It's like she can't just live in the moment." She makes a pompous face; chin in, shoulders back. "She takes it all so seriously!"

We laugh, because it's funny (not Jane's anxiety - I know, even Mom knows, that it's not especially a laughing matter - but the delivery and expression are perfection) and also because it's just great to hear her laugh.

Then she gets serious. "I just wish that I didn't feel so guilty."

I shake my head. The change of direction is kind of stunning. "Guilty?" I say. "What about?"

Her face scrunches, my fragile Mom, equal parts sorrow and confusion. "Oh, all the things. Your Dad. Everything. I'm so worried that God won't forgive me even though I ask. Every night."

This both breaks my heart a bit, and raises my gorge. Of all the people.... It's just wrong.

The god issue is one we rarely discuss. She knows my thoughts are... eclectic. She was raised Mennonite Brethren - strictly hellfire and damnation. Her utterly illogical and overwhelming guilt, and the institutions capable of using it so carelessly and intentionally, are a big part of the "why" of my eclectic agnosticism. Guilt was injected into her DNA at a young age and we haven't found an effective gene therapy for it yet.

Somehow, I seem to have escaped permanent infection. Maybe it's because I was adopted.

"Mom, don't you think that a god worth believing in, a god that would die for you, would have heard and delivered the first time you asked?"

We've had this talk before, and she's heard it in her heart before - where truth really rests - but like so many things now, it requires re-visitation.

She smiles, remembering, like a star peeking out of the twilight. "Yes, I know. I suppose He would. It's just so hard sometimes. To remember that. You know?"

"I know," I say. "But it's worth remembering. Let's make a post-it and put in on the computer. You can remind yourself every time you sit to play Spider Solitaire."

She gives me that look, very serious like when she used to tell the teenage me that smoking was bad. "That's a great idea. I'll see it every time I e-mail you too."

"That you will. Any idea where your Post-it's are?"

"Oh, I just saw them earlier. Now where did I put them...?" There's a pause and she looks around her, lost. Forlorn.

And she pulls them out of her little emergency bag. Presto. Haha, the jokes on me. And we laugh.


* Extra awesome points if you can name the movie this fragment of dialog came from.
** All names except "Mom" are fictionalized. Everything else, as best as I wish to put it back together, is pretty much true.

World Alzheimer's Day - Sept. 21 - Bloggers Unite

(This is a Bloggers Unite cross-post)

When I was nine my parents split up. My dad, the aforementioned English teacher, left and, with him, so did our family’s sole source of income.

My mom has suffered from chronic depression and anxiety her entire life, has a grade 8 education, was emancipated by fifteen, spent a brief time as a street kid (imagine that in the 50’s), and worked as a data punch processor until she met and married my dad. By the late 70’s when they split up those data punch skills were archaic and useless.

We spent about a year living on welfare.

After Dad left she never spent another night in the hospital due to her depression, perhaps in part as a result of him not being there, but I think mostly because she just told herself that she couldn't. For me.

She managed to pay the bills and the mortgage until she got a job as a graveyard supervisor at a group home for the mentally challenged. She built that job into a career by turning our house into a miniature group home. By the time I was 12, she was caring full time for two developmental challenged paranoid/schizophrenic women. That was her career, seemingly forged out of thin air, and the means by which she kept us in hot dogs and hamburgers.

We never lost the house, I was always fed, always clothed, always loved, and mostly aware of how amazing all of that was. It was, at times, challenging being a teenage boy in that house, but it was also a priceless and unique experience.

To this day, I have a hard time calculating the scale of the sacrifices she made; how much focus and effort a life of service to those two women must have taken; how hard it must have been to not give up or give in to the depression that was and still is a giant cloud over her head; how much she overcame to keep our modified family together.

Thinking about it always leaves me dumbfounded and a little fucked up for a while, but in a good way.

So when I say that she is the most courageous person I know, please understand how serious I am. She is my hero.

Mom turned seventy early this year and has, over the last year or so, been slipping (mostly) gently into the early stages of Alzheimer’s. We’ve had some bad stretches already, but adjustments to her medications have helped her come back twice now, and we’re currently holding.

I know that, realistically, it won’t last forever, but I’m thankful for the time we have, and for her continued courage.

There’s no bullshit around the house. She’s aware of what’s happening and it scares the shit out of her some days, but we talk about it when it does.

We laugh whenever possible. We remember together, and the repeated stories never seem old. She tells me that she’s proud of me and I tell her I’m more proud of her. We say ‘I love you’ all the time, more than we used to, and that’s never a bad thing.

So far it’s a pretty gentle experience and we’re thankful for that too. We know that it won’t last forever, but while it does… well, while it does we’ll be in the moment and appreciate it.

Every moment. Every story. Every hug. Every ‘I love you’. Every. Fucking. One.

Hell, she’s my hero and this is just life. You deal, right?

It’s what heroes do. My Mom taught me that…

September 21 is World Alzheimer’s Day.

Maybe your folks are fine, maybe not. Either way, be thankful for the time you have. It’s precious and too short.