Wrapping Up? (It Gets Better Part 4)

I closed Part 3 by telling you "how badly my mom was doing began to really hit me," complete with that link. If you haven't read it yet, you can click over and do that now -- it's essentially Part 4 of this story, and this post labeled Part 4 should be Part 5. Not confusing at all!

But I didn't say in that link how the trip down to California to say goodbye to my mom went, because it hadn't happened yet.

I absolutely love this picture. Somehow, amazingly, it shows joy and laughter as I sit by my mom, who's dying, and by my baby, who by the grace of God is whole and healthy even though her organs are in weird places.

Sadness. And Mothers.

Trigger warning: Sadness. And mothers. Clearly.


I learned this summer, three weeks ago, that my mother is now in late-stage Alzheimer's, and has probably about twelve months to live.


Womp womp.

I learned other things this summer too, things I want to share with you, but I couldn't put this one in the same post as all the bright and happy things. I just couldn't. They can exist on the same blog, and in the same heart, but not in the same post, not today. (Link to the bright and happy things forthcoming, if you'd like to read them. Watch this space. If you don't see a link on Facebook or wherever when that goes live.)

(Also there are other wonderful, funny, cheery, and deep posts over at the linkup on Emily Freeman's blog, here! And there's still some time to join in, if you want!)

Pieces

Pieces

I saw pieces of my mother
in my home the other day.
I tried to put them back together,
but they wouldn't fit --
not the same way.

I saw pieces of my mother
and I tried to talk with them.
One conversed quite nicely,
but from others --
just a blank stare.

I found pieces of my mother,
and pieces,
and pieces.
No matter where I looked for her,
the whole just wasn't there.


I said something about pieces of her in a facebook conversation about my mother's dementia, and that inspired this poem. I'm not sure it's an accurate representation of my feelings, it's just the poem that came to me. Sorry if that's a cop-out.

An alternate first stanza that might reflect the truth a little better would be something like,

"I saw pieces of my mother
in my home the other day.
I didn't try to reassemble them --
knew they wouldn't fit --
wish I'd tried, all the same."

But I don't like the sound of that as much. The rhythm isn't quite right.

The rhymes and words are so simple, it seems a little odd in light of my last post on rhythm and rhyme. Odd in light of the fact that it's the sounds of the words that drove my writing, more than the feelings. It seems sort of like something a child would write. Like I would have written, as a child. Perhaps it's okay, a good juxtaposition with the subject matter? What do you think? I think it seems to work, in fact I'm growing quite fond and proud of it, but I'm biased. I can never see my own writing very clearly, with the same eyes that read everything else. Or at the most, it seems to take years of not looking at it.

This one appeared almost wholly formed in my mind at 1:30 in the morning about a month ago. I hate to say things like that, it contributes to an idea that writing is all about inspiration, rather than time and work. It's work, for a number of reasons. Enjoyable work that I can't keep myself from doing, but I also need to sit down at my desk and commit myself to get anywhere. As Philip Pullman says when asked where he gets his ideas from, “I don’t know where they come from, but I know where they come to: they come to my desk, and if I’m not there, they go away again.”

Nonetheless, this poem did more or less "appear." It was kind of like a quick slideshow -- I'd follow one line to see where it was going, and then the next would materialize. I suppose that's a part of the work of writing -- Kristin Cashore said she thinks Neil Gaiman said that "everyone has ideas, the difference with writers is that writers notice that they're having an idea."

It takes practice to notice, too (as reading more of the link above would corroborate). It takes writing to be on the lookout for writing ideas. (At least for me.)

I noticed a phrase repeating in my head that sounded a bit to me like a line from a poem: "I saw pieces of my mother," or maybe it was simply "pieces of my mother." I went from there. I got up out of bed and wrote it down, and crossed out words here and there, replaced some of them with others. And there it was.

Of course, talking about my writing process as though I am a writer, one of the ones Neil Gaiman was talking about... it sounds kind of arrogant, if you don't like the poem, if it doesn't work. If it does work, well... then maybe it's okay.

So, feedback? Do you like it? Any similar sorrows you're struggling with? Or tell me, what do you think about the balance between work and inspiration, not just in writing, but in any creative endeavor? Or about the balance of self-criticism? Is there something personal you've been wanting to share somewhere, but you're doubting yourself?

Judging by the number of questions here, maybe I'm trying to do too much with this post, and should be more focused. Meh.

To shift back a little to the poem's subject matter:

Let us pray for all who suffer and are afflicted in body or in mind;

For the hungry and the homeless, the destitute and the oppressed
For the sick, the wounded, and the crippled
For those in loneliness, fear, and anguish
For those who face temptation, doubt, and despair
For the sorrowful and bereaved
For prisoners and captives, and those in mortal danger

That  God in his mercy will comfort and relieve them, and grant them the knowledge of his love, and stir up in us the will and patience to minister to their needs.

Gracious God, the comfort of all who sorrow, the strength of all who suffer: Let the cry of those in misery and need come to you, that they may find your mercy present with them in all their afflictions; and give us, we pray, the strength to serve them for the sake of him who suffered for us, your Son Jesus Christ our Lord. Amen.
 -The Book of Common Prayer, from the Liturgy for Good Friday

Flash Fiction Contest

Writer Unboxed is having a "7 Sizzling Sundays of Summer Flash Fiction Contest." For stories of 250 words or less. Rules and prizes are at the previous link, and here's the latest writing prompt, open for submissions until early Wednesday morning (4 a.m. Pacific Time).

Thought my writing friends might be interested. You've missed two weeks, but there's still time to participate this week and for three more weeks. And hey, lots of good little stories to read, too. This is a more serious writing website than some. Not very amateurish. Donald Maass and Juliet Marillier are even among their blog's regular contributors, which is pretty awesome. (I haven't yet reviewed Writing the Breakout Novel by Maass, though I loved it, but I've reviewed five of Marillier's books -- probably easiest to find them by heading over to my Book Reviews by Author page and scrolling down to Marillier.) Anyway, all that to say, maybe that's why most of the entries seem to be of a fairly high quality. All of them are available to read in the comments. And if you want you can just read the best of the best by looking for the winners and the honorable mentions announced each following week.

I entered the opening week (same link as the rules and prizes above) and this week (yeah, latest writing prompt link). So there's that, too. The labels on this post that don't seem to relate to the content here are about those stories. I wasn't very creative -- based both stories very strongly off myself -- but hey, they don't know that! Shh, don't tell.

Imagination

Now for the second of the two notes from facebook originally addressed to the Fantastical Lit class, seeing Mom's dementia through the lens of, well, fantastical lit.

"Imagination." It was written on 10-12-11, based on the class session from 10-5-11, "The Journey," which was based on The Two Towers by J.R.R. Tolkien, as well as on the movie version of The Two Towers, and Greenwitch and The Grey King by Susan Cooper (books three and four of her five-book "The Dark Is Rising Sequence," respectively). Here it is:

I keep relating the Fantastical Lit discussions to Mom's dementia. This week I didn't think of anything particularly insightful -- pretty much just, "memory loss = bad," but the questions from last week are still haunting me.

I hate to keep bringing up an illustration so negative, but... obviously it's very important to me. And it feels a bit odd to talk about this very much with a group of people I don't know very well yet, but... I keep thinking about it. And it's tied in with our discussions.

So here's what I keep wondering: I can imagine a time when my mom won't recognize me anymore. But should I? Will it help me make peace with her illness? Would I stop mourning each new milestone, each major piece of memory she loses, and would that be good? Would I then be able to be more grateful for all the things she still remembers, right now? Or, imagining the degeneration, would I become more like Denethor?

How do I keep both "the world shouldn't be like this" and the preparation for the inevitable in my head? By focusing on the good in the midst of the evil?

May I never grow callous and bitter,
May I never cease to protest.
For the world ought to be beautiful
For the world, it shouldn't be so.

The world is beautiful. But not as it should be.

Thoughts, comments? I really would like input from others on this one.

Faerie and Dementia

I've taken pains to import all of my blog posts to facebook. I add them as notes, so that I can see them collected all together, and then I add them as updates so they show up in news feeds. But there are a couple notes from facebook that I haven't put on my blog, and I'd like to.

There are two that I can think of. They both went on facebook rather than here originally because they were related to a class I was sitting in on, and mostly the thoughts were addressed to people in the class. At first. Didn't get as many comments as I hoped there, though, and they have to do with Mom, so this seems like a good place, too. Feel free to skip over these if you've seen them before.

This first one, "Faerie and Dementia," was written on 9-7-11, and was based on a class session based on the movie "Spirited Away" and these books and stories: Phantastes by George MacDonald, "Smith of Wootton Major" by J.R.R. Tolkien, Alice's Adventures in Wonderland by Lewis Carroll, and Lud-in-the-Mist, by Hope Mirrlees. However, when I wrote it I was primarily thinking of Phantastes. Here it is:

Preliminary thoughts on tonight's Fantastical Lit session, "That Bonny Path":
1) Faerie is a place of heightened reality and it compresses growth.
2) Many people discover who they are in Faerie.

Therefore, Mom's dementia is like something from Faerie. One of the EVIL things from Faerie, granted, but still Faerie. Fr. David told me dementia seems to compress relationships, and I know it's been a weird sort of mirror, showing me aspects of myself I hadn't seen before.

Mom's obscured, as by a Fey mist, but the pieces of her I can still see, the pieces that aren't actually deceptive, give me a heightened sense of who she is. My reactions are intensified as well, and I see pieces of myself reflected back from the mist.

Dementia is too complicated to represent in Faerie as only a single obstacle. It could be anything from a life-sucking ogre to a mere veil of illusion, masking some grand lady. But whatever it is, how would the hero most nobly respond? How would he or she meet the trial and come out, farther down the path, as a better person?

Current tactic? Mostly ignore it and concentrate on other aspects of life. Yeah, that doesn't seem like it would end well. It's true the pressure's off right now -- before, I was also dealing with the stresses of a new job, plus some other hormonal issues. Everything beat down. It's easy, when I'm not feeling so depressed, to say, "Let's not go there." Heck, I genuinely feel good right now!

But in Faerie, if my spirits have lifted, it is not so that I can ignore the obstacle still standing in my path.

On the other hand, it's not my responsibility to guide the bright path into a darker valley, if that isn't where the road is going. The answer is not to beat my spirits back down, or to retrace my steps or circle back to where I've been before. Hmm.

But the ogre's road and mine seem to lie together for some distance. How does one accompany an ogre without being eaten? And respect the lady in the ogre's clutches, when one can't save her?

I laughed. I cried. I yelled and shook with anger.

"I laughed. I cried. It moved me, Bob."

Um, to be accurate, I suppose the title should read more like, "I laughed. I cried. I yelled and shook with that feeling you get when you've just yelled at strangers, and whoa, did you really just do that, that is so very atypical, but man it was justified, that was ridiculous, how dare they make you yell at them..." Yeah. That emotion. Not exactly anger. Not exactly embarrassment, either.

As for the crying, that was a different occasion. And I didn't, much. Just felt like it.

This was an interesting day.

An anniversary, of sorts. The day of the Alzheimer's Mass, at work. The day, a year ago, when I started thinking and working on my first blog post about Mom's dementia. (The major thinking anyway -- most of my posts do some early percolating first, but as a step towards actually sharing what I was thinking about, it basically happened a year ago today.) The next day I finished and posted it. The Mass stays on the same day of the week, so the date is slightly off, but meh to that.

It's been... an interesting year. I think I might even mean that in the full Firefly sense. Well, the second half of the year wasn't so bad.

It was good to start a new year. Felt hopeful. Nice. Thank God all that stuff from last year is over...

Oh, wait. It isn't. One thing is just going to keep getting worse and worse. Still, without some of the other things going on, it's a LOT easier to handle. Or it would be, if it would just stay still, d*@& it.

Yeah. I was feeling fine. I sat in on a Fantastical Lit class over the fall semester, which was awesome. Processed a little bit more about Mom's dementia in the midst of the class. Occasionally worried that I was ignoring it too much, and this was going to be bad, but that was it. The worry didn't even turn me instantly depressed, like it would've if I hadn't been doing so great.

Until today. Stupid anniversary.

No, that's not true. There were some twinges before this.

She's been repeating herself more, but... well, I know that it's beyond normal, that it's obviously because of the dementia, but it doesn't seem so bad. Sometimes you repeat yourself even when you remember what you said, just because it's something that's important to you. This was beyond that, but... okay.

Recently, one of my sisters sent Christmas presents for everyone to my parents' house. Mom has them, and has been distributing them. Doesn't make complete sense, but it's one of those things she always would've done in the past, and she basically still can do it, so I guess it's good. I came over one day, she gave me mine. I think before I left she wondered for a moment if she had something for me, I reminded her she'd already given me the present, and that was that.

Then I came over again, last Thursday, to pick up something. She took me aside, pulled out the presents, was looking through the labels... "No, Mom, it's okay. You already gave it to me."

I mixed a shake for myself and was on my way out about ten minutes later. She stopped at her room, pulled out the presents... "You gave it to me already. It's okay."

Oh, and she was also pretty perplexed about how to butter her potato.

I know these are small things. I know she still has so much, so many memories that could be gone later... but today is an anniversary of sorts, and I am sad.

I ended up missing the Mass this morning, taking a friend to the hospital instead. (She's completely fine.) I'm kind of glad I missed it. The Mass itself is beautiful, but I think today seeing the Alzheimer's patients would've made me cry. I just... don't want to see that right now. I'm fine with seeing it in general. Just... not now. Please?

I mean, I would try to stop thinking about it, too, but that didn't work. I finished the novel I was reading, and killed my phone's battery browsing facebook before giving in. I could continue browsing on my computer (did, for a bit), but I think the time has come. Have to write to think. At least, in a productive, now-I-can-put-something-behind-me sense, and not the broken record kind of thinking.

The other thing I've been thinking about recently? Being young for this to happen. I was... very tentative, at first, to accept any condolences about my relative youth and her relative youth. Implying that because I'm 29 years old and was 27 that last October then this must be harder for me, well, that implies it's easier on my older siblings. And I don't want to say that, and I don't want to try to quantify or compare levels of pain. No good comes of this. Although I think I'm fine with saying it could very well be harder on Melanie. I... with the death of a parent, okay, it's obviously not good to lose a parent as a child, or in high school or college. It is Bad. With a spouse... tragic when a newlywed dies. I think the one part that made this harder for me to admit is that when someone dies after a long full life with them, you grew to know them that much better, there's even more there to miss and grieve the loss of. But... okay, you can be glad for the time you had. That's life, everyone dies eventually... But yeah, Melanie, you having to deal with this when you hadn't quite graduated from college yet? That's bad. No one should have to do that. I remember her heart attack while I was at Biola. That was bad.

29 years old, on the other hand, is not that young. That's the other bit. I was a morbid child and thought when I was a kid about my parents' age and my age and when they might die, and because I was only a child with a very limited grasp of life expectancy and it sometimes happens this way, I thought, okay, what if they die at 60? That hasn't happened. That would've been... 2001, for Mom, and end of 1998 for Dad. Thank God you're still here. Still here while I went through high school and college.

Heck, back in not-quite-as-modern times, I could die at 29, and it'd be young, but not unheard of. For my parents to die or suffer the diseases of old age when I'm 29, and they had me when they were older... Yeah, not the most tragic thing out there. I'm not a child anymore.

But all that to say, I think I'm fine with this particular condolence now. It's... lonely. I am... really, really, really tired of hearing about people's grandparents who have or had Alzheimer's. No offense to anyone who's told me that. Sincerely, I do not mind, I haven't minded any of these statements on their own. It's just as a group that it's grown taxing. It's like it's rubbing my nose in the fact that I'm young, and none of my peers are dealing with this yet. It's probably the exact thing I would say, in your place. And I'm sure having a grandparent with Alzheimer's can be very, very painful. I definitely grieved when my grandparents died, and I wasn't at all close to them.

But this... this is different. Except maybe for a few people who were raised by their grandparents instead of their parents, the relationship is different. And I'm young, and it's hard, and this kind of thing isn't supposed to happen to me yet, and it sucks. In fact, I would very much like to hit something.

There. I said it. I'm going to hold back from calling that a "pity party," and just be honest. It does suck.

I've also been thinking about identity. I'd rather identify myself by my strengths than my scars, I think, but because it's often much harder and takes much more vulnerability to show another your scars, sometimes they feel like the most real, deepest and truest things about yourself. At least to me.

I get depressed at times, and sometimes a thing like Mom's dementia can be handy when you're in pain -- you can point to it, and say, "Look, this. THIS."

But of course it isn't handy at all because it just adds to the pain.

And there were times last year when it felt like so overwhelmingly everything... of course it seemed like a part of my identity. It is. My mom has dementia. That's a part of who I am right now.

But... I had other pains, before this happened. Those were a part of my identity. They're harder to explain, and point to. Not as overwhelming right now, but if harder to share, in some ways they still feel truer, because of that? I don't know. Maybe not. But one thing I do know -- I am still the same person I was before this happened. At least in part. I've changed, but not completely, and I'm still me. So she can't be all of my identity... Not that I thought she was the whole thing but... Okay, I don't know where I'm going with this, anymore. Just thinking out loud. Sorry. Moral of the story: Identity is complicated? Guilt over how you see yourself is bad, even if you define large parts of yourself by the wounds and scars, rather than by the joys?

Now for something completely different! In honor of the other interesting part of my day! That I referenced way back at the beginning of this post, and even posted a teaser sketch for, on facebook and google+!

(I was going to do a better drawing for the post, take more time, but it's getting late, and I just want to finish this thing. I'd really like to post it tonight instead of tomorrow. That way I won't have to change my "today"s to "yesterday"s.)

It was a new experience, because I've never had people honk and yell at me for something I so obviously couldn't do anything about, before. At least, I don't think that's happened to me before. It was ludicrous.

Though I've drawn little tiny arrows, those are to show which directions the cars were pointing. We weren't going anywhere, save for a bit of impatient inching, now and then.

In retrospect, I think the guy next to me and the guy behind me didn't see or couldn't tell (respectively, probably) that there wasn't any room at all for me to move forward. I mean, it wasn't like it was one of those situations where it would be a little tight and you wonder, "Can I get through? Should I try?" No. There were two feet, maybe three between the van and the corner. But I didn't notice that the guy beside me wasn't blocked, that he could advance and fix the whole mess from the very beginning! So see? It's not always easy to be very observant about what's going on behind you! He didn't notice that I wasn't being an idiotic-let's-make-a-huge-traffic-jam-on-the-off-chance-that-if-I-wait-here-I-can-get-a-parking-spot person, and I didn't notice that he...was! Yeah.

Wait, I was trying to be nice, and give him the benefit of the doubt, and all that. Oh well. Oops.

At first I typed (and posted) that as "...I-can-get-a-parking-lot person." Yes. Just wait here, and we will give you a PARKING LOT! It's magic.

Um, so he yelled some, and the guy behind me honked, and I yelled back (complete with big arm gestures), "Where am I gonna go? I can't go back, he's there, you're beside me, they're in front of me, what do you want, I can't go anywhere!" Or something to that effect. I was ticked. And then, wonder of wonders, he moved! And the van could move, and the woman driving the van thanked me, and everyone lived happily ever after. The end. Though, driving away, I was shaking with the emotion I mentioned at the beginning of this post.

See, who ever said yelling never fixes anything?

Ooh, do you think they're wrong about hitting stuff, too?  [evil grin]

On Mom and Pain and Broken Bones

No, Mom hasn't broken anything.

First of all, when this imports to facebook I think I'm going to tag quite a lot of people. I don't like that, I feel embarrassed to tag so many; like I'm standing in a crowded room, waving my arms and yelling, "Look at me!  Look at me!" Especially unsettling when the blog post is on such an uncomfortable subject as pain, and it doesn't really build to a hopeful point.

But there are reasons to tag you all, as individuals. I have so many family members, to start with. Okay, that makes it sound less individual, but still, this is relevant to all of you, I think. Then there's my home group at church (spiritual family), other people I've had conversations with about Mom, people who've said they're praying for me, and other very good friends. There's SLOBS -- I don't attend very consistently and I don't know many of you super well, but I like you, I consider you friends, and, well... shared books are a strong bond, I think.

I might have whittled down the list the more I thought about it, instead of adding to it, but some of you are going through your own immense pains right now, and... maybe this post will be helpful. I'm really not sure. Despite the lack of a general tone of positivity, it was helpful for me to think through. Maybe it will be for you, too.

If you mind being tagged for whatever reason, please let me know. If we don't have that close of a relationship and I'm making you uncomfortable, if you always read my blog posts anyway and would rather not be tagged as well... whatever. Or, if you're reading this and I didn't tag you and you'd like to keep reading updates, please let me know that, too.

Alright. Remember my comment from my original post about Mom's dementia, "I can think about everything else relating to her dementia, in the present and in the past and in every aspect of my own reaction to it, but the future... I think maybe one thought, then flinch away, like the instinctive reaction to testing a broken bone"?  Well, recently I've thought of a lot more similarities between this experience and my one experience with a broken bone. Physical and emotional pain and injury have a great deal in common, more than I realized.

The more I think of it, the more I see and find. I can't count the number of things they share, not without writing them down. I'll try to remember everything I've thought of so far, though. Wish me luck.

So here we go, but first, a little background: In February of 2004, I played a game of Ultimate Frisbee. I played it barefoot, because I'd found that was more enjoyable for me than playing with shoes on. I felt lighter on my feet, faster, even. Certainly faster at changing direction, which is important in Ultimate.

I'd do it again, in a heartbeat. Barefoot Ultimate is FUN. Risky, maybe, but so is driving a car.

The game was not unusual, although I think I hadn't been playing as much as I'd like around that time. That wouldn't be unusual, either. Anyway, in the course of the game I jumped up to block a throw to my brother Nathan, and as I remember it, rather than landing on my feet wrong and from there crumpling to the ground... well, there was no pause in the motion. My descent was one smooth and seamless event, from the brief fall through the air (brief because I'm no impressive jumper) to sitting on the ground in pain. Someone said they heard a crack. I didn't hear it, but I guess my body was busy doing other things instead of listening.

Despite this, it pretty much felt like any other time I'd landed wrong or twisted something a bit. I figured the pain would go away soon. The biggest difference I'd observe between a broken bone and pain that goes away in a few minutes or hours or days... well, I've given it away already, haven't I?  It's that the pain doesn't. You keep expecting it to (if you're like me), but it doesn't.

But I'm getting ahead of myself; talking about my thoughts and reactions gets into territory of similarities with emotional pain. Background. That's what we want now.

So... I didn't get X-rays until a few days later, as I recall. The day after, people advised me that I should probably get it checked out. Eventually I agreed enough to go to the Health Center at Biola. A doctor there told me I'd probably broken the base of my fifth metatarsil -- a very common injury, apparently, at least for athletes. (See, playing Ultimate barefoot must have little to do with it -- he didn't mention an epidemic of barefoot athletes.) But they don't have X-ray machines at the Health Center. I had to get a ride to the ER (ended up making more sense than making an appointment with someone, though it didn't feel like too much of an emergency anymore), and I don't think I did that right away, either. But eventually I did, and they confirmed it was broken. The base of the fifth metatarsil, by the way, refers to your little toe -- but the bone connected to it higher up in the foot, by your ankle.

This was my first broken bone and is still my only break thus far -- hey, I drank a lot of milk. And it wasn't a very bad break. No one really deigned to explain it to me, to tell me it was a "hairline fracture" or anything else, but I did get to see the X-rays. And I couldn't see it. Not that I'm trained, but still.

On to similarities.

1. Both learning to live with Mom's dementia and breaking a bone are like other experiences I've had, contiguous so to speak, but simultaneously Other.

I've already mentioned how it felt like any other time I landed wrong. Well, that's true enough. But it taught me all kinds of new things about pain, too. On the first day, for example, I couldn't make myself put my weight on it any more than I could make myself put my weight on a piece of paper (I've never been good at those fall-backwards-and-I'll-catch-you games). My brain just wouldn't let me, it felt impossible. That was different. Feeling the pain fade a little, and then moving my foot to test whether it was better now or not and seeing spots in front of my eyes, deciding that the foot movement might not be a good idea after all -- well, that was different, too. Lying in bed trying to find a comfortable position for it, with the sensation that my foot was hanging by a thread, though it quite manifestly was not -- that was different. I'm still not sure that it's the most pain I've ever experienced. I wouldn't say so, I don't think. But it was pretty close, and despite the similarities to other events, it was different.

Well, Mom's dementia has maybe less in common with other events than the bone breaking did. But there are commonalities. I've certainly been depressed before, I've grieved before. Depression caused by self-loathing and depression caused by loss... it's kind of surprising how subtle the difference is, actually. The flavor is different. Depression caused by loss feels a little more powerless... no, only because now I know how to deal with self-loathing, I can bring myself out of it. At the time I couldn't, or it was much harder at least, so the powerlessness was similar, too.

Still, pain about Mom is certainly different from other emotionally painful events. Some of that will come out as I continue to write about the similarities with physical fractures. Some of it, like the pain of the break not going away, is just in the length of the pain. That, on its own, makes it so, so different from other painful events.

Oh, but speaking of which:

2. "It's not that bad."

I didn't feel guilty for feeling pain in my foot. But I DID think at first that the pain would go away. I certainly didn't think it was broken.

I'm not terribly close to my mom. And I'm not living with her, not a caregiver. She's not all that far along. So it shouldn't be that bad, right?  Heh. I think it's still broken. And limping over to the doctor's office to confirm something's wrong does hurt... So does not taking painkillers, but you don't want to numb the pain, walk on it, and make it worse. Yeah.

3. The ups and downs, the pain and the fading.

This is fairly self-explanatory, I think. Even in the first days, when the pain was constant, the intensity level still varied slightly. Pain about Mom also comes and goes. Sometimes something seems to set it off, sometimes it seems to start throbbing for no explicable reason. I suppose just because it's broken, that's explanation enough.

This is not quite the same thing as, but very related to:

4. The testing of the pain.

Here's one of the things the analogy is really helping me understand. I can't process all the pain about Mom all at once. I mean, when it's really bad, it feels like it's the entire weight of pain all at once, all intent on killing me -- but it's not. And the important thing, for this particular point, is that I don't have to feel like I'm "supposed" to process it all the time. It may even be healthy to run away from the pain, at times.

Now, in order to heal a physical break, one doesn't have to test the movement at all, really. Processing emotional pain and healing a physical injury don't have a direct one-to-one relationship. If you keep a bone immobile forever it's the muscle that will be harmed more than the bone, right?  But still, you do have to test it at times to figure out how much it's healed, to see if you can use it again. Doctors help, you don't have to test it as much when you know you're supposed to wear your ortho shoe thingy for six weeks or whatever it was... but until you see the doctor, it's the small experiments and the resulting pain that tell you you have a problem. They're necessary.

But you're not going to go testing it all the time. You'd faint, for starters. (Even if you don't think it hurts "that bad" -- your body may be shielding you from the full force of the pain, you know.) And you'd probably do further injury to yourself.

The cycle of thinking about Mom and retreating, pain and relief, feels very similar. Both the pain and the flight from pain are necessary, I think. It gets to be too much, I have to retreat sometimes. But I also need to process it. This is also related to:

5. Peripheral pain, and circling around the actual injury.

I don't know that much about how the body's designed. I know extreme trauma can cause you to go into shock. And I know an injury in one part of the body can cause the area around it to feel pain, too. Sometimes the pain in the surrounding area can be so intense, it's hard to tell what's actually broken.

For all I knew, I'd sprained or broken my ankle. It's not like I was set on that as an explanation (as the doctor I saw seemed to assume), but it worked as well as anything else for me. My ankle HURT. It took the doctor tapping on my ankle bone to show me the ankle wasn't the issue.

As I "test" my emotional pain about Mom, it also feels like I'm circling around the real issue. (Writing about it, incidentally, is a more distant pain. I'm thinking about it, but not as much as when I started composing the post in my head. Mostly I'm thinking about the writing, the word choice and phrasing and how to fit in a new thought without interrupting the transitions. It's easier.) Here, again, the analogy is helping me to understand, to view this as a healthy thing. The pain is too great NOT to test it gingerly, not to circle around it. Don't want to go around whacking an injury, just to make sure nothing's really wrong...

The way I had been looking at it, though?  More like: "Good grief, I think this hurts so much, but I'm not even really thinking about Mom, am I?  Just self-centered things, like how stressful this is, and how it's affecting my work, and observations about pain... But what pain?  What am I feeling pain about, when I'm not really even thinking about Mom?  How pitiful is that!  It's like I'm trying to make a big deal out of nothing, feeling sorry for myself, taking a sick sad comfort in a new identity as someone whose mom has dementia, when in reality I don't even care about that, do I?  If I did care I'd be thinking about that, not this."

I had a feeling there was a flaw in that thinking somewhere. I knew it was a big deal. Remembering how my foot felt helps me see the flaw though, in a way I couldn't before. Surrounding pain doesn't invalidate the injury, it's more like the true measure of it. When your whole foot turns black and blue you don't say, "Oh look!  It's only a bruise!  What are you whining about?"

And that is a relief. I think it might be natural and healthy, as I process this, to spiral inward. As I mentioned in point number four, I can only take so much pain at once as I test the injury. So I start by processing the pains that are more peripheral, and only when they're less overwhelming (when thinking about them isn't going to make me faint, to extend the metaphor) do I move on to more central issues. That sounds right. And that process is pretty instinctive, it's not something I have to think about very consciously. This exercise is just helping with the reduction of guilt, I think I'd still be doing the spiral thing whether I ever understood the reasons behind it or not. Well, definitely. That's what I was doing.

6. Control and lack thereof.

I can't go back and keep the injury from happening. And beyond that, when I broke my toe/foot I couldn't move across campus to my classes nearly as quickly. But I could adjust to that fact, learn to account for it.

It was exhausting. My body was working hard to heal itself, plus pain itself is draining, plus walking became a lot harder, took a lot more energy. I couldn't change that. I could... well, I could sleep. That helped. I could go easy on myself, allow myself to heal.

I couldn't walk normally, but I could hop. I could wrap my foot with an Ace bandage and kind of limp, I could go to the doctor and get crutches, go to the ER, get X-rays and an ortho shoe, and then I could limp around a little better.

Speaking of control brings me to a big reason I'm writing this, though it has less to do with broken bones.

I started last week to read Ambiguous Loss: Learning to Live with Unresolved Grief. It explains why (with a multitude of reasons) this sort of ambiguous loss is so stressful. I won't bother to explain all of that here. The important thing... before this, I wouldn't have said I find ambiguity to be all that difficult, or that I need to be in control all that badly. But now... well, evidence seems to speak to the contrary.

Lack of control is harder with this than with breaking a bone. Breaking a bone wasn't so much an ambiguous loss. Writing about Mom helps, though, I think. Helps me make some sense of it, understand it... it helps a little with the perceived lack of control. Maybe writing is my ortho shoe, heh. At any rate, analogous to physical injury or not, writing helps.

On the other hand, I guess the point of contact between physical and emotional pain in this area seems plain enough: I can't fix it. I can learn to cope with it. Whatever that means.

7. Learning to cope is not an easy transition.

The only way to learn how long it would take to limp from my dorm room to a class across campus was to do it. I couldn't account for it with perfect accuracy at first. It's sort of a hit-and-miss, hunt-and-peck, learn-by-failing process. Right after the game of Ultimate, before I had any bandage, crutches, or ortho shoe, when I couldn't put any weight on the foot and was hopping everywhere, how to climb stairs?  Tried hopping, figured out it didn't work, crawled.

Again, I think the similarity with emotional pain is pretty evident. I don't know how to deal with this yet. I can only figure it out by living it, I think. Advice can help, but it's hard to communicate things like levels of fatigue, subjective, "in-your-head" things that vary based on so many factors. Mmm, but advice is welcome, that's for sure.

8. It helps when people know.

I mean, then they do things like offer to go back and get the textbooks for you that you forgot, so you don't have to trek all the way across campus all over again. And they give you chairs to put your foot up, and they forgive you for missing your cohort group meeting because you fell asleep (day after the break, if I remember correctly). These are good things. It's hard enough already. No reason to turn down sincere offers of help.

Of course, when one is crawling up stairs, or hopping across campus, or severely limping, or using crutches, or wearing a bandage or an ortho shoe... Obviously it's easier to tell that something's wrong. Random strangers will ask what happened when an extreme limp is advertising the pain you feel at every step.

Emotional pain can be harder to see (if you're not crying). It can be tempting to wear one's heart on one's sleeve, just to be seen. But then it's also not tempting. I mean, you don't necessarily want to cry, either. And talking might lead to that... The whole thing's dangerous, darn it.

Do I want people to cut me some slack right now, because of Mom?  No... wait, I mean, sure!  Heh, not about anything in particular. If I'm doing a poor job in some area of my life, I'd like to know. And it may not be because of the stresses... But still, more generally speaking, support is a good thing. Sharing the burden is a good thing. I could write all this stuff in a journal without publishing it online, and it'd probably still help me to think through the issues and clear my head, but it wouldn't be the same.

Finally, and not so relatedly:

9. Thinking about Mom and testing the break can both make you feel like you're going to faint.

I've fainted before, and I've come so close that I've blacked out before, so I know what it feels like. Oh, thinking about Mom doesn't make me feel very close to fainting, but the physical symptoms are the same, if much lessened. A little queasy and sick to the stomach. A little weak. A little lightheaded.

I'm careful, thinking about it when I drive. I know from the time I blacked out that thinking about feeling like that other time when you almost fainted can make it much, much worse, so even though it doesn't feel at all close to fainting, I'm careful. Don't want to black out while driving.

I've felt a bit of that physical sickness while writing this (thinking about broken bones on top of it probably didn't help, I suppose), although on the pain scale this writing hasn't been nearly as bad as other parts of my day, "testing" this injury by thinking about it. Maybe it's time to go read a novel.

There are still other similarities to list. But it's getting a bit late to write them all, if I'm also going to read before bed, and this post has probably gotten long enough, anyway (ya think?). So... maybe I'll post more of them later. Broken Bones and Dementia, Part 2. Something like that. Even if I've listed all the main ones already.

Meditations on a Parent with Dementia

averagecats.com: 1026 

3/28/11 Update: I am retroactively making this blog post an Alzheimer's Blogging Competition Entry. To enter the competition, donate $1 or more, write your post, and email the organizers. For more details, see the Disabled Shop Blog.

For those of you who don't know, my mom was diagnosed with vascular dementia last October. I hadn't told all that many people until recently, but I bet many of you who read this are my family members, so I'm pretty sure you're aware of it.

But for those who didn't know, I'll answer the FAQ I've noticed from telling people in person: She's only 69, not as old as one might expect, for dementia. It's probably because of her heart problems, since it's apparently reduced blood flow to the small blood vessels in the brain that's causing her difficulties.

I've played with the idea off and on since the diagnosis of blogging about it. There's just so much that feels odd about the whole situation to me. I suppose it comes of having a new experience, never lived through before, which is fortunate. I'm glad it's my first time living through a parent having dementia. Sometimes I feel guilty that I can be so detached at times -- not so much caught up in the event itself, or concern for my mother, as in writing in my head about my own reactions and emotions, and even writing about writing about it!  But it's not necessarily as bad as all that -- I think writers can have a tendency to sit back from themselves and observe moments of grief, like C.S. Lewis' A Grief Observed, although I won't compare myself to him in any other respect. Writing is how writers make sense of the world, and we have to observe to write.

Yesterday the church I work at had a Mass for Alzheimer's patients and their families, and I was able to attend part of it. Thinking about going, that morning, is what made me start to take notes on my voice recorder as I drove to work, about actually going ahead and writing this post, and about what I wanted to say. I'm glad. Whether it's a helpful thing to read or not, it's very good to get it all out and off my chest. It was a beautiful service, too. Maybe next year I can bring Mom with me.

I must make the disclaimer, though, that this is my own personal reaction to her dementia, and it doesn't necessarily share anything in common with that of my siblings. Every person is different, and every relationship with a parent is different. I cannot speak for them. (Or for you, perhaps I should say, if you are the ones reading this.)

While I'm doing disclaimers, I should explain that Mom is still in pretty early stages. She can still recognize people, her memory isn't all that bad. It's her processing speed, her words, and her decision-making that seem to be most affected for now. She gets confused easily and has trouble telling stories. Ah, those are understatements. Everything is much more so than what would first come to mind when you hear a symptom like "confused easily." She can be left alone, but she couldn't live completely on her own. Her declines seem to come in spurts; she'll seem the same for a while, then get worse really fast, then stabilize again, and so on. I'm not around nearly as much now that I'm not working for Jeff anymore, but I know that's how it was.

Now, disclaimers and explanations aside, time for my couple observations. Maybe my first observation should be about that "meta-observation" I've already talked about, that sitting back and writing in my head. In a more sinister form, I have a tendency (in everything, not just this) to secretly want everyone to know, to understand and pity me. I want to be the hero of my own story. It's... human, I suppose. Especially growing up in such a big family, without much attention. I've come to peace with the fact that a certain amount of desire for attention isn't sinful -- we all need love, and no one can love without giving attention. It's okay to desire love, it's just important to be more focused on giving love than on receiving it. That doesn't mean one can't think about receiving it at all. I think. And attention seems to be the same way.

It's understandable too, as a writer. Framing your life as a story may not be a bad thing; so long as you realize that you aren't the hero of the story, or even a hero at all, necessarily. So I try not to take a sick pleasure in pain (not really an issue in the most painful moments), and remind myself that yes, this is a big deal; and yes, it's okay to want your friends to know.

I suppose my second observation is that pain comes and goes in waves. Sometimes I sincerely feel fine, and it doesn't seem difficult at all. It's the way things are, the way things have been, and putting it into words feels melodramatic and unreal; not an actual reflection of my life and my relationship with my mother. A side-effect of gradual change, perhaps. In fact, when my mom and dad and sister first got back from the neurologist and I heard how it went, the predominant emotion was relief; finally, we knew what was wrong, what to expect, and someone had taken her seriously. This story certainly didn't begin at the time of diagnosis, though diagnosis made the story easier to tell, easier to frame in one's mind. It was an answer to prayer.

Other times I don't feel fine at all. Very soon after that relieved, calm moment when I first found out, I decided to look into descriptions of vascular dementia online. That was a mistake. I freaked out, and no matter how often I've started writing this blog post in my head, I haven't thought much since then about what Mom's dementia could look like in the future, or how it might progress. Steadfastly ignoring the future might sound unhealthy, but I'm not sure.

You see, a diagnosis is helpful in terms of what to expect. You stop suspecting yourself of going crazy. Even though I knew before that neurologist appointment that something was wrong that my mom couldn't control, I've been much more patient in my interactions with her afterwards. It's so much easier to be patient. Simple interactions now seem overwhelmingly sad, but at least I don't get mad at her. Normally.

But on the other hand (and this is where I come back from my tangent to talking about ignoring the future), in some ways it's not helpful at all, because even now no one can tell you what to expect. My brief stint looking it up online told me that very quickly. It just varies too much, from person to person. There are averages, but no one can really tell me how much longer my mother is going to live, or what's going to happen in the meantime. Apparently the decline is faster (on average) with vascular dementia than with Alzheimer's, but that was about as definitive as anything got.

So... I could play out painful scenarios in my mind, but maybe (yeah, I'm not quite sure) I'm glad that my brain seems to be shying away from that. I can think about everything else relating to her dementia, in the present and in the past and in every aspect of my own reaction to it, but the future... I think maybe one thought, then flinch away, like the instinctive reaction to testing a broken bone. All I know is that I want to have kids while she can still recognize them.

I suppose... When I was a kid, I think the very first time I heard about Alzheimer's I thought it sounded like the worst thing that could happen to a person. It seemed incredibly sad. I wouldn't say the worst, anymore, but it still seems tragic. Maybe that's why I won't let myself imagine it going that far with my mom. And maybe that's part of what makes it seem so unreal right now -- yes, it's hard, watching her seem to... lessen... but it's not yet what I would visualize, thinking of dementia or Alzheimer's. The worst hasn't happened yet, and I can't quite make myself believe that it ever will. Though the possibility still has a weight, to nag on the edges of my brain.

One aspect of pain coming in waves is that, when I'm already sad about something else, those are often the times I start thinking about Mom more, and I become sadder. It's like it's just waiting there, in that emotion, for me to join it and think about it. Which may be a good thing. Intermittent grieving... it may be too much to handle, to feel the full weight all at once, or all the time. If gradual change is what gives me the ability to not always feel pain, all the time, at the loss of the person my mom was, and the relationship I had with her, such as it was... then I'm glad of gradual change. Even if it means living with it for longer. I think.

I haven't been very close to her, not for a long time. But she is still my mom. The exasperation I first felt, when her symptoms were first appearing and sometimes seemed exactly like how my mom had always been, only more so... well, that exasperation shifted to guilt shifted to sadness. I suppose I grieve the impossibility of ever having a deep relationship with her, now. I already knew I couldn't, to some extent, but this made it more real. At the same time, I do have a chance to change in how I respond to her. I have a chance to be patient and loving with her... in the extreme, actually. There's a book I plan on reviewing later, After You Believe by N.T. Wright, which talks about the gradual formation of virtue, and how it takes practice for something to become second nature. Well, if dealing with a confused parent isn't good practice in developing patience, I don't know what is. And... it's a good thing, to have that chance to deal kindly. Not that one can "make up" for earlier, impatient times, but it's still good, I think.

And that's all I have to say about that. For now. I'll keep you posted.

Home

averagecats.com: Individuality

Home by Marilynne Robinson

Read: 4/20/10-5/2/10

LibraryThing tags, if I had put this on LibraryThing: Family, Dysfunction, Grace, SLOBS

This book wasn't quite satisfying to me, but I decided to share about it anyway because of a couple compelling features: first, it's one of the only books I can think of about people from a big family -- after the kids are all grown up. An obvious hole in the existing literature, for people like me... not that there are many of us, but still. I thought it might interest my siblings. In Home they're all dispersed, the book is only really about three of the family members, but the large family still changes things, affects their memories and so on.

Second, the father in this book is... growing at least a little senile. I related to that too, although I feel funny saying much about it on my blog. But for those who don't know, I, being the next-to-youngest in a very large family, have older parents than people would expect for someone of my age. Like Glory, the main character in Home (although she's actually the youngest, and there were only... eight in the family, I think). My mother... seems to be losing some of her memory.

It was weird, seeing things I've never even put into words, skillfully and even lovingly portrayed in a fictional character completely unconnected to my family. To see in someone else's character some of the things I think odd about my mother in particular, apparently a possible general feature of someone growing old, even where it's only a more extreme version of a trait that was already there. Sorry, it's not easy to be more specific.

It was a hard book to read, but I liked it; or at least some of the time I liked it. I still want to read Gilead before I come to a final verdict -- the book jacket claimed Home is an "entirely independent" work, but I'm not sure I trust it. The father in Home is the best friend of the main character in Gilead. Apparently.

Oh, by the way, as to what the book's really about, as opposed to what I personally identified with about it -- it's about a son who fills the prodigal son and rebellious preacher's kid roles, but not exactly; it's about a father and retired preacher who loves him, but is sometimes horrible; and about a grown woman who has come back home because her own dreams have fallen down around her, watching the father-son relationship, wanting to be important somehow to her big older brother she's always admired but... Um. She's not the narrator, it's in third person, but it's still from her perspective. The book's not really about her, but it is. Yeah, a helpful description, I know. Anyway. And, of course, it's about home, in all its glory or lack thereof. So many things about home. Marilynne Robinson is very, very good (in this novel, at least) at showing the ambiguities and complexities of human relationships. There aren't a lot of dramatic, earth-shattering events in Home, but she makes even a person over-analyzing a situation totally engaging. She packs a lot of emotion into very simple sentences and scenes. So yeah, I think I liked it.

"'It is an oddly patient beast, my carnal self. I call it Snowflake. For, you know, its intractable whiteness. Among other things.'"