Saturday, July 02, 2011

A Thousand Apologies

What I'm truly sorry for is this: for not finding some way of letting you all know that Walter and I are both okay.

We are. That's not to say we're doing fine, or even doing very well; but we are okay, and that sees us through. And before I go one more step, go anywhere else, first, first - recently, we've been doing better. I want to assure anyone and everyone who might be even mildly interested that we've had some smallish but significant pieces of good news lately.

The biggest one is this: Walter's been approved for social security disability, and his 5-month *waiting period* is over, so he now has an income. I keep running around saying we're rich. Ha! No, of course it isn't much. It has no bearing on the house still being in foreclosure. But when you no longer have to make those awful choices between essential heart medications and food, you sure do feel rich. It's enough. It gives me enough of a boost of energy and hope to find the strength to try to speak again.

I don't know why I lost my voice. I only know I want it back. Maybe understanding *why* could help me figure out better how to overcome it. But I see no point in waiting any more to figure it out first; in fact, that's probably been slowing me down. Instead, I'll try - try - to just bite the bullet and let myself talk.

One thing that's surely been holding me back is how rough the path life's got me on has become. The combined and accumulating weight of the illnesses, the poverty, the losses, became crushing. Choking. I'm way beyond caring whether anyone thinks less of me for *letting it get to me,* or for admitting out loud that it hurts that bad, or for appearing weak, or afraid, or blind to how much this entire country is suffering. Anyone who never felt these impacts is either a sociopath or a stone cold fool, and I'm neither. No more than I'm weak, or a coward. I have the facts, and I know better.

Mingled in with the devastation are these extraordinary episodes of peace and joy, of fabulously good luck, of hope that seemed so unreasonable early on, yet turned out right and true. For whatever reasons - yes, probably including that I make the effort to watch for them - those episodes have long been another part of my life's path. In the midst of the worst, those wondrous blessings keep coming.

So, then: What changed? Not so much the occurrence of the events, I guess; rather, it was their intensity.

It's never been a secret that we bloggers blog, in varying degrees, for our own good. For therapy. Oh yes, me too. You betcha.

But that intensity, especially the levels and degrees of the wretchednesses that kept coming up, made me not want to dump those harsh realities on you, my readers, my blessed, faithful, intelligent, discerning, incredibly kind, patient, forgiving readers.

From the comments and emails that you've continued to send in spite of my silence, I see you figured it out anyway.

Meaning...I might as well go ahead and tell the whole story, as best I can.

I may have to leave tiny bits out, but not by much. The hard stuff gets pretty bad sometimes, and gory, and I want to be sure you understand the risk of continuing to read here. I'm still myself, of course I am; but where I'd rather be telling you about these beautiful three flowers slowly unfolding by my driveway, and how my entire ponytail palm burst into bloom from every separate head at the same time, and posting their gorgeous pics - instead of all that, I'll have to start with things like the day I learn how to work my camera again. And the day I go outside onto my driveway in my motorized wheelchair, all by myself. I've done neither for a very long time.

For two and a half years, since March 2009, I've been bedridden 99.9% of the time. These days I live in a hospital bed in what used to be my home office. All day, all night, day after day, week after week. I'm on oxygen 24/7, and sleep sitting up. I have an aide that comes in for a few hours four days a week to help me take a shower, and to change my bed and do light housekeeping and laundry. This costs the insurance company far less than another awful stretch in a nursing home would.

On an average day I can walk around 20 feet at a stretch - not steadily, and not always; and I still fall sometimes, or pass out. That part is dangerous. Very. I bleed and bruise and peel skin off at the drop of a hat. There's a bedside commode to pee in; and although I can't put a meal together for myself, I can feed myself when someone brings my meal to my bed. There's an over-the-bed tray table on wheels, hospital style but smaller, that holds my laptop, pitcher of light iced tea, the daily stack of little pill cups, and a few pens and such. I fit my plates or bowls in when it's mealtime, and some nice person brings me good tasty diabetic food.

That person is highly likely to be Walter. To our mutual joy, we have reconciled, something we both thought impossible. We are better partners than we've ever been, all these years since 1993. Understanding how his porphyria affects personalities and relationships played a big role there. Not to forget, of course --

Cancer changes everything.

We'll have an update on how he's doing with that pretty soon.

Okay. There's so much more I want to say. I haven't even answered your comments yet. My stamina for posting is not what it was; and not making concessions for that fact has left me with a good handful of nearly-finished posts and emails, never sent. I'll try to keep talking, more as a sprinter than long-hauler, hoping it may help me keep on going on.

Writing and posting this is one of the harder things I've done in my life. My God. I miss you all so much.


Desert Cat said...

Welcome back, babe!

As I've always said, write what you want when you can. I've got an ear tuned this way for whenever that is.

Morris said...

As DC said, welcome back.

You're in my RSS feed, so I know if you've written anything.

All I can say is my heart goes out to you. Just glad to hear from you, blog-wise.

Anonymous said...


Your lurker is happy to hear from you again.

The human, fighting spirit is alive and well in you and I am inspired.

Heaps of blessings and hugs on ya.


Nancy said...


Your flame lily bloomed, a couple of weeks ago. I chose to believe it meant you were still with us...

Joyce Ellen Davis said...

You guys are SOOOO not forgotten! And I knew when Nancy's flame lily bloomed you were still here.

And best of all, you are still YOU.

I think of Walter as my Pepek. My Pepek the Assassin book is coming out soon from a press in England. I will send a copy.

Please look at Pepek the Assassin YouTube for a little preview, and let me know what you think!

XOXO Joyce

Dazd said...

YAY...I don't get online much but when I do, I check to see if you've posted. And I can tell you it warms my soul to see a few posts here.

Welcome back!!!

JP Mac said...

You and Walter remain in our prayers.