Circular Staircase

I was going to continue on with the truth in fiction, but I'm having trouble deciding what to share next... I'm not ready to tackle my favorite book yet, I'm saving that up. There is so much personal stuff in what I'd be sharing...

Plus, I was toying for awhile with starting another blog. Lots of bloggers out there do this, and it would have been a way to separate things for those who are more interest in the details of life with Joel, and those who actually enjoy reading my more general "musings" about things like the truths I've found in fiction, for example. I toyed with the idea of sorting them, or classifying them somehow... but I just couldn't.

They are just all too connected. I can't separate any of it out from the rest. It might seem like writing about a favorite book, or sharing a memory, or talking about how I know God exists, it might seem on the surface to be different from when I talk about Joel, about loss, about living suspended between life and death and all that stuff. But it just isn't. This blog is about life in general, and my life in specific. And all those things are all part of it. Everything I think about when I "muse" touches how I act or react in the areas directly connected to Joel. And absolutely everything I think about has been touched by my experiences with him. So, for better or for worse, you will find it all here "jumbled" together. My favorite books, thoughts about "issues," doctor's appointments, memories, practical advice, and philosophical musings all mushed together. It's a blog "potluck!"

Today's potluck dish is something true about grief, in the form of a poem. But don't worry: it is NOT my poem! :) There is a quote from the book A Grief Observed, by C.S. Lewis, that I'd like to share. It links in an almost uncanny way to this poem I love, for both are speaking of grief, and the way it seems to keep falling in on itself. The way it seems like a terrain you can't seem to get out of, though you come upon pockets of forest, or meadow, or hills, somehow there is the marshland opening up before you again. I'm afraid I'm not explaining it very well, which is why I shall share the quote and the poem with you.

Lewis says "For in grief nothing 'stays put.' One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?"

The poem is by Linda Pastan. "The Five Stages of Grief."

The night I lost you
someone pointed me towards
the Five Stages of Grief
Go that way, they said,
it's easy, like learning to climb
stairs after the amputation.
And so I climbed.
Denial was first.
I sat down at breakfast
carefully setting the table
for two. I passed you the toast ---
you sat there. I passed
you the paper---you hid
behind it.
Anger seemed more familiar.
I burned the toast, snatched
the paper and read the headlines myself.
But they mentioned your departure,
and so I moved on to
Bargaining. What could I exchange
for you? The silence
after storms? My typing fingers?
Before I could decide, Depression
came puffing up, a poor relation
its suitcase tied together
with string. In the suitcase
were bandages for the eyes
and bottles for sleep. I slid
all the way down the stairs
feeling nothing.
And all the time Hope
flashed on and off
in defective neon.
Hope was a signpost pointing
straight in the air.
Hope was my uncle's middle name,
he died of it.
After a year I am still climbing, though my feet slip
on your stone face.
The treeline
has long since disappeared;
green is a color
I have forgotten.
But now I see what I am climbing
towards: Acceptance
written in capital letters,
a special headline:
Acceptance
its name is in lights.
I struggle on,
waving and shouting.
Below, my whole life spreads its surf,
all the landscapes I've ever known
or dreamed of. Below
a fish jumps: the pulse
in your neck.
Acceptance. I finally
reach it.
But something is wrong.
Grief is a circular staircase.
I have lost you.

I love that poem. I confess that I don't understand every word of it, but some of it seems like a mirror image of my heart. Yeah. Grief, it's easy, like climbing a staircase after an amputation. I'm glad to share the poem with you because it is beautiful and even if you don't understand every line, I think the feelings of it all come through.

But what I really wanted to share, with the poem and with the quote, is the circular, spiraling nature of the grief experience that seems common to us all. The "I felt all this before and now I have to feel it all again!" sort of experience. The "Why can't I ever seem to really leave this pain behind me??" sort of feelings. The hashing and rehashing, the working and reworking. Sorrowing and re-sorrowing. If you have experienced it, this is likely plucking a chord, a vibration deep in your heart that is humming in empathy. If not, then the poem and Lewis's words are the only explanation I can give you for why those who are grieve must go over things again and again.

For every time you manage to grasp the reality of what you have lost, you are struck anew with the reality of what you have lost. Oh the irony that every time you can accept for a moment the truth of what has happened, you are starting the grief process all over again!

And so, recently I have been mourning (again) the way I couldn't nurse Joel. The way that his really "wee" months were a hazy blur that had a nightmarish quality. That there were almost no happy moments of milestones. That almost the instant he stopped crying, I realized he could not see. I have nothing happy to take out of those first 4 months. I want my baby back.

Grief is a circular staircase.
I have lost you.

P.S.

I never did find the journal entry about the hummingbird (looking through about 10 journals), but I did see the hummingbird in my backyard this afternoon! Can't believe it! I wasn't hallucinating after all. ;) I don't even have a feeder, and I sure don't have many flowers. But there it was, a very fast, very tiny, hovering green bird. Next year, I'm planting MORE red geraniums.

A Hummingbird in Memory Lane

I have been taking a little trip down memory lane. On Friday, Steve and I came back from an evening walk to discover a hummingbird in my flower bed. It was really unusual because though I know this is a place they can be found, I think I've never seen one here in the city. And it was late at night, dusk was on it's last legs. In fact, I almost thought it was a moth, but the flight pattern is so distinctive.

Hummingbirds are my favorite bird. I love them. And it reminded me of another time when I saw one, way back. Hummingbirds are rainbows are two things that God sometimes seems to "send" my way as a reminder of His love and faithfulness, and I knew I had actually written a journal about that other time when I saw a hummingbird.

So I started pouring back through my old journals, which is a task, let me tell you! I couldn't find the entry about the hummingbird, but I sure found a lot of other stuff. I found the journal written right around the time I took the leap of faith, applied for a job up North, and ended up in Oxford House. I found old heart aches and losses and disappointments. I found entries about camp. And about old boyfriends. About university. I found old failures and struggles. I found lessons I'd learned and some that I "relearned" several times. And some beautiful stuff too. Some fantastic times. I believe the general feeling is called "nostalgia." Though sometimes the yearning for the past was more of a relief not to be there!

Mostly I realized how much I had changed, or at least how much my life had changed! It was a strange feeling.

And it made me wonder about "The Question." Which I do occasionally anyway. If I could go back in time, would I change things up? Would I still end up married to Steve, and the mother of a child who is terminally ill? Well, the nice answer would be to say "No! I wouldn't change a thing!" But really, sometimes it is tempting, when things get tough, to think the OTHER way. Think about how great it was BEFORE all the pain and loss and sadness. When I could go out when I wanted and have fun, be carefree. When people described me as spirited and lively, bubbly, even "plucky." When I was thin and had long hair, nice clothes and good make up every day. Ya know?

Well, the journals were a good thing for me, in a strange way. Yes, they were full of happy times and good memories. But they were full of other stuff too. They were full of the inner workings of my heart, not just how it looked on the outside. So I shared my insecurities there. And the times I was lonely. Or felt a failure. The things that I struggled with. They were a more realistic picture of what my past was.

And it was great. Lots of good stuff. But going back there would mean becoming that person once again. It would mean I would feel wonderfully thin, and pretty, young-spirited and bubbling over with life. (Yeah, I don't feel like that much anymore. Grief can take the fun out of life and kids can take the thin and pretty out of you too!) That part sounds good.

But I don't really like the trade off. I'm done with the struggles and problems from that time of my life. I don't want to go back there. There was also lots of less that great stuff about the person I once was. I don't want to trade back the me I am now for the me I was then. (if only I could trade back the body and keep the experience!!)

Partly because I AM still that person. Underneath all the grief, I'm pretty sure there may still lurk some spirit, maybe a sense of humour and fun. And because letting God take you places in life doesn't make you LESS of you. The blows of life chip away and refine the picture, making you MORE into the person God always intended you to be.

Hammer blows are not fun. They are painful. But I don't want to stop the process, turn it back, or mar the finally product. I want to see this all through, to the end. I don't want to lose the maturity that will be formed, that I can already see from looking back in my journals.

And most of all, because as hard as this is, loving Joel and losing him, it is a privilege. I've said it a million times, if I could cure him I would. But I'd never, never choose to give him up over having him in my life. Or Caeden. Or Steve. They are the family God has given me, and I love them. This is where God wants me to be. In the end, that is good enough for me. I wouldn't trade that place for the world.

Another Little Update

The meds seem to be working on Joel's irritability. Or pain. Whatever it is. The last 5 days he has been much happier, even smiling and laughing once again. Which is a huge relief and makes me very happy.

His seizures have NOT become more controlled yet. In fact, the past three nights he has had increased seizure activity once again. It is easy for me to tell this now, because if he has a prolonged, intense seizure, his 02 falls and the monitor goes off. This doesn't happen for the shorter, "smaller" ones, just the longer, "bigger" ones. (Short and long refer to the actually time the seizure takes, smaller vs bigger have to do with the intensity of the seizure, which seems somewhat correlated to length, but not always directly connected, if that makes sense. For those of you who are really interested in seizures from a medical standpoint, or from your own children.)

So the sat monitor has been going off for the past few nights. I can somewhat counter-act this by placing him on a "low dose" of 02. This brings his oxygen level up enough that it doesn't drop below 90 when he has a seizure. What I can't do is rid myself of the unease I feel as I lie in bed and hear the subtle but distinct noises of the seizure activity.

This morning (5am), after lying in bed and dozing on and off to the noise for about an hour, I just got up and got him up too. He was wakeful between the seizures anyway, and I didn't want him to wake Steve up. Plus I figured that at the end of the extended period of seizures, he might have a bit of a crying jag before falling asleep (which he did).

In any case, I didn't get much sleep last night. I'm ok with that. It is, thankfully, Sunday, and I got a bit of sleep later in the morning. I'm just happy that Joel is happier.

Of course, not too crazy about the uncontrolled seizure activity for several hours at a time. I just gave Joel his first dose at the second and final "step up" for the med that the neurologist gave us. I know that she'd say we might have to wait at least a week until the meds work, but...? Maybe I have been spoiled, but when we have upped his Keppra in the past, it has worked almost immediately. This time it's gabapentin, but it's hard not to get a bit concerned when the seizure activity seems to be almost increasing again, while we are upping the meds.

But that is what this disease is like. Every time a problem is fixed, you go back to dreading the day with the problem that can't be fixed anymore. For now, I am just happy that Joel is smiling once again. His laugh is so beautiful.

Truth in Fiction: Part Two

Well, I asked my husband about the first blog in this little "series." He compared me to PT Barnum, but I no longer remember the quote. It was more in the nature of a complaint, than a compliment, though.

I believe his general charge against me was I said that I wouldn't write about the Bible, because it wasn't fictional, and then I DID write a story from the Bible. I think the nature of his charge was that I was guilty of false advertising, or of saying one thing and then doing another. He said he was under the impression I was going to write about a book I was reading and then I did no such thing.

I tried to tell him about artistic license and how sometimes what you write takes on it's own life, how you can end up in a direction you hadn't really planned. I think he may have remained unconvinced, but he hastened to assure me that it was well written. Good save, Steve.


So I hope no one else felt I cheated them, or tricked them with sleight of hand, or was just plain old confusing. The Parable of the Lost Son just leaped out at me when I wrote my introduction as a beautiful example of how a story can add emotional weight to a truth. Make us understand it in a fresh and powerful way. I'm not saying the truth always needs to be "dressed up." I'm just saying there can be something very special about hearing it in "story form."


And I'm going to apologize ahead of time. Sorry to Steve and everyone else, because though I am going to write about some beautiful books mostly, I will quite likely find myself unable to entirely leave the Bible out of it, and certainly not God, because I believe that ALL truth is God's Truth.


And I'm going to add a further note about fiction, good vs bad. Something I MEANT to say in my first blog, but then I got carried away by a beautiful story. What I wanted to say is that while words feed our mind, books are often like a garden full of both beautiful and nourishing plants, and also weeds. Some books are full of so many weeds that it is hardly worth trying to root around them searching for that last withered potato. These are books I try not to waste too much time reading. And I certainly don't recommend them to others.

But in any book written by a human being, you are likely to find some weeds here and there. That is why you are a "gardener." It's your job to be discerning and decide what is edible and nourishing, or will beautify the living space of your mind, and what will be entertaining but worthless, or even noxious. And it is your job to decide if this book "garden" is worth the weeding, or if it is just not worth the effort.

This is my disclaimer. My favorite books are ones which I feel are so full of roses and lilies, of tomatoes and cucumbers, that if I see an occasionally "weedy" portion, it troubles me not the slightest. I merely toss the weeds away and continue. It is our job to learn how to garden our minds via the written word. Which means I'll be expecting this of you. I'm sharing the good stuff I have found. But if you read a book I mention, and you find the occasional weed, I'm totally leaving the responsibility with you. Books written by humans are imperfect, just like the human who wrote them. If you are reading this, then you obviously have a brain of your own, and I think you can figure this all out. Right?

So let me tell you about a book I love. It is a tricky little book, because it appears to be a children's book. But I have read it many times, and every time it amazes me. I feel sure that the main audience is meant to be adults. The Little Prince was written by Antoine de Saint Exupery in french originally and my copy is a translation. I have NO idea how you say de Saint Exupery, at all, which is why you will not see one of those (pronounced: ) notes that normally come in a book review. In fact, every time I try and tell someone about the book I get embarrassed because they invariably ask me who the author is. So if you have some idea how it is said, please, please leave me a comment.

And now that I have started off with the book, I find I hit another difficulty. The same one I had when I tried to tell Steve about the book I love. He asked me, quite reasonably, what the book was about. And I was stymied. As I am now. Because I could give you a description of the "plot" of the book. But I find in doing that I would be guilty of one of charges the book makes against us "grown-ups." It says:

When you tell them (grown-ups) that you have made a new friend, they never ask you any questions about essential matters. They never say to you, "What does his voice sound like? What games does he love best? Does he collect butterflies?" Instead, they demand: "How old is he? How many brothers has he? How much does he weigh? How much money does his father make?"
Only from these figures do they think they have learned anything about him.

And I find that if I give you the plot of the book, I have not told you any of the "essential matters" about the book. But for the "grown-up" who reads this blog, I will take the advice of the book itself, and give you the plot out of forbearance. ;)

So the book is a first person account of a man who is stranded in the desert when his plane breaks down. And while he is there, he meets a little boy, a prince, who tells him the story of how he travelled from a distant star, and what he came across on his journey. In the end, the little prince returns to his star, for he has left behind a rose there, a rose he loves...

Yeah, it doesn't sound like much, does it? The back of the book does a better job, much better, but it is longer and also it would be pretty lame for me to fall into something I would call plagiarism in one of my students, even if I did name my source.

But I'd rather get more into the heart of the book. Into the some of the beautiful things found inside it.

For example, on the journey this little prince makes, he comes across a small planet with a businessman as the single occupant. This businessman tells him that he is very busy doing something of "consequence" as he is adding up all the stars he owns. He owns the stars, he explains, because no one else has thought of it, first dibs, so to speak. So he adds up all the stars, writes the number on a piece of paper, puts the paper in a drawer and locks it with a key.

To which the little prince replies:

"I myself own a flower," he continued his conversation with the businessman, "which I water every day. I own three volcanoes, which I clean out every week (for I also clean out the one that is extinct; one never knows). It is of some use to my volcanoes, and it is of some use to my flower, that I own them. But you are of no use to the stars...."

And so this book illuminates a truth: it is of no consequence to own something, if you are not of use. Houses were meant to be homes. Cars were meant to be transportation. Family and friends are there for us to love and assist. And every possession is useless unless used with hospitality and generosity. For owning something merely for status or greed is as silly as owning the stars, no?

There is so much in this book I love. But I can't reproduce the whole experience of reading it for you. I can just recommend you do that yourself. I will end with one of my favorite parts of the book. The little prince has finally arrived on earth and met a fox, who asks the prince to tame him.

"One only understands the things that one tames," said the fox. "Men have no more time to understand anything. They buy things all ready made at the shops. But there is no shop anywhere where one can buy friendship, and so men have no friends any more. If you want a friend, tame me..."

The fox tells him:

"The wheat fields have nothing to say to me. And that is sad. But you have hair that is the colour of gold. Think how wonderful that will be when you have tamed me! The grain, which is also golden, will bring me back the thought of you. And I shall love to listen to the wind in the wheat..."

Later on, after the prince has tamed the fox, he must leave and continue on his journey. The fox says he will cry now. The little prince is dismayed. He didn't want to hurt the fox, and now he feels he has done him "no good at all!" But the fox assures him that being tamed has done him good, "because of the colour of the wheat fields." He then tells the little prince his secret:

It is only with the heart that one can see rightly; what is essential is invisible to the eye"

And so when I look at my son, in his frail and broken body, I say "what is essential is invisible to the eye. It is with my heart that I see you rightly." And when I think of how much I will cry when this little boy who has tamed me has left me, I remember that it has done me good. Because of the wheat fields. And so much more.

A quick little update

Today I spoke to neurology and to palliative care about Joel's irritability and his seizure activity.

The neurologist decided to up his gabapentin, and palliative care said that it could even be upped a fair amount more if this does not work. That relieves me, because one thing I often worry about is running out of options. I'm always happy to know there is still a trick left in the bag, so to speak.

They also told me that it was not necessary to bring him in for another work up. Whew. I'd have done it, no problem, if they thought it was a good idea. But like I have already stated, there hasn't been any other symptoms, it looks very much like what happened last year at this time. So I'm glad they felt it wasn't necessary.

Otherwise it would be a trip to the ped for the "move all the limbs, poke the tummy and check the ears and eyes." And a bunch of x-rays. And an ultra sound. And blood work. And this would mean either a lot of separate appointments, or even worse, a hospitalization. I'm so happy to skip it all and try what makes the most sense, upping the meds.

Palliative care also said that it was ok to use the clonidine I give him at bedtime for the times when he is inconsolable. Which was good to know, specially as I already had the go ahead previously and so had used it this way a few times. They did say that I might find that even a half the dose would work, and would not make him so sleepy. It leaves the system quite quickly and so can be used 3 or 4 times a day at proper intervals. It's not something I prefer to do, but like I said, I'm always happy to know there is still a trick left in the bag.

Because listening to your child cry is exhausting, and it works on my spirit even when I think I'm "tuning it out" emotionally, staying calm and collected and all that. It's pretty awful, even when you are trying to keep your emotional equilibrium. So I'm hoping that the seizures stop. And I'm hoping the crying stops. And I'm even hoping for the smiles to start up again.

The truth of fiction

I have been writing a lot of sad blogs lately. Well, who am I trying to kid, much of what I write is pretty sad, my parents (who are among my loyalist fans ;) ) call them tearjerkers.

So today I just want to write something in a different vein. About something positive, or maybe even beautiful. I'd like to write a few blogs on the truth I have found in fiction, highlighting some of my favorite books.

Before I do that, though, I need to write a little introduction.

Your mind is a living organism. And words are what feeds it. You mind will grow and develop depending largely on what you give it to nourish it. It will be shaped by what you give it to learn or think about. This includes the spoken word as well, but what I am going to focus on, of course, is the written words we fed our minds.

(I in no way claim to have come up with this analogy. It's been around for a long time. I don't know the first someone used it historically, but the first historical reference I know of is found in the Bible.)

We fed our minds a lot of knowledge. We read informational types of writing. We learn how to cook, we learn from "fix it" books. We read about history (though you can debate on what percentage is actual "fact.") and we read about science or medicine.

This stuff might all be true, but this is not the sort of nourishment I'm going to talk about (obviously) since I have titled this blog the truth of fiction. Because this sort of knowledge is all just a tool. That is great and I'm all for it.

But what I'm going to talk about is the sort of truth you can learn from fiction. Which I'm going to differentiate as wisdom, as opposed to knowledge. You can learn a lot of facts. Knowledge. But wisdom is when you learn how to use the knowledge, skills and experiences you have to live a better life yourself and improve the lives of others.

I'm not included my beloved Bible in this blog series for a very good reason. Because I'm writing about fiction, and I put the Bible in a very different category. It is the standard of Truth for all truth. I realize that not everyone who reads this will agree with me on this, but in the interests of truth and honesty, I needed to put this note of explanation about the Bible in here.

While the Bible is not fiction, it might be important to note it does contain fiction. That might have gotten some of you to "perk up your ears" and wonder what I'm going to say. Relax, I'm not spouting heresy. Jesus himself told stories, which we put in a special category and term a "parable." What they teach is a Truth. But the form it comes in is fictional.

For stories are powerful things. They have an amazing ability to travel through our minds and into our very hearts. Which Jesus understood.

So when He could have told his listeners that God loved them and forgave them, instead He told them a story. A beautiful story about a father and a son. It is one of my favorite stories, so even though I said I wouldn't include the Bible in my blog series about truth in fiction, I find myself compelled to do exactly that, as a perfect introduction.

You may be very familiar with this story. You may have never heard it. You can find it in the book of Luke, chapter 15 and starting at verse 11. I'm just going to recount it in my own words, a very loose sort of paraphrase and feel free to check up on me by reading it yourself.

There was a father who had two sons. And the youngest basically said "Look, what matters to me is getting my inheritance and you are still a LONG way from dying, so it's just not moving fast enough for me here. How about we skip the part where you die, and just get to what is important, me getting my cash." (that is totally my paraphrase, but what he said really implies this.)

The father gave the son his money and the son quite promptly moved FAR away (Let's just say he's not even planning to make it to Christmas dinner) and spent the money living like Brittany Spears in her heyday. Which is why, like Brittany, he soon found himself in financial straights. But unlike her, he had no way to recoup his losses. He found that the friends that money can buy don't last long when the recession really hits you.

So he took a job looking after pigs. (Remember, he's a Jew, so a pig feeding him is a horror, never mind having to fed a pig. ) I can't even think of a modern equivalent. Closest I can get would be Paris Hilton, or Donald Trump working as a garbage collector.

Despite lowering himself to one of the most humiliating jobs, he still can't scrap together enough to satisfy his hunger pangs and he starts dreaming about skimming off some of the pig fed. (Now picture Paris or Donald picking through the garbage for food.)

The fact that he is at the bottom of the bottom is what finally gets him thinking of home.

But he knows he has seriously goofed up. He remembers that his father is a kind and generous man. He figures that if he owns up to how wrong he was, and how unworthy he is, his dad might allow him to work for him as a servant, and he knows that his father makes sure his workers are very well fed.

And here is my favorite part of the story. That father who has been injured and insulted appears to be watching the road for him. I can just imagine that man, day after day, through all his tasks, continually glancing up to check for any figure approaching with this hope in his eyes.

Because while his son is still approaching, he recognizes this IS his son coming, finally. And he races down the driveway, hugging and kissing the son in the midst of his apology. That father welcomes him back into the family with great joy, he even throws a party.

This story is an illustration of God's love. He is the father. We are the son. And that is all I need to say by way of explanation. The story does the rest.

It gets the information that I am in need of forgiveness and that God is waiting for me to admit it so that He can welcome me back into his family, it gets that information straight through my brain and into my heart. Sure, I understand the truth with my mind. But now I also feel it in my heart. And God wants both parts of me. Because that is the only way it will move from knowledge to wisdom. The only way it will change me.

And this is what GOOD fiction will do (of course there is bad fiction, I'm not talking about that stuff). Good fiction will say something true in a way that not only gets to our mind, but to our heart as well. And that is necessary for the truth to be able to change us. For us to have wisdom, not just knowledge, we have to learn things with not only our minds, but our hearts.

And my favorite works of fiction do just that.