The Grinding Wheel Grinds Slow But Small

Every year it seems that life has become so much more complicated that it couldn't possibly - watch out!
Know what I mean?
I learned today that I do not qualify for Medicaid because I am not blind, or 65, or disabled. Not being able to walk very well or to be able to stand up for long or to do much is not the same thing as being officially disabled. And even if I am, in fact, disabled, I still have trouble with the label, although I really appreciate my handicapped parking sticker on the days I really need it.
So I'm still uninsured, and I'm having surgery next Wednesday to remove the lump that probably isn't cancer but no one wants to take any chances. The good news: well, it probably isn't cancer, that's the good news. The other good news is that Swedish has a charity program that will take care of the costs of my surgery. So I'm told. This knowledge leaves me free to worry about the surgery itself, not paying for it.
It's enough to worry about.
I did qualify for a little food stamp credit, and that was good news, too.
We're reaching that point now, when most of our assets have been exhausted. The months of attrition are having their effect. Tomorrow I plan to cut off the cable and the land phone line. I will cling to internet a while longer, because I spend so much of my life on the internet, reading or answering emails, researching the odd questions that arise daily, looking up information which I have to save and print and pass along to other people - it is my connection to the outside world.
I was told to rest up before my surgery, so I would react to it better. I laughed. Rest up - yeah, that's a great idea. I must try that.
Seriously, I suppose I must. It won't be a great big surgery, but really, is there such a thing as "minor surgery?" Isn't having the body cut open and having a piece of it removed, doesn't that sound sort of "major?"
I am blessed in that my friend Sonya has agreed to drive me in to the hospital and back on the day. That was my biggest worry, truth to tell. I've done it so many times for Rick, but he's not healthy enough to do it for me - and he might have to do dialysis that day. So.
As a reward, Sonya will get to spend time with me after I have been given painkillers. I have been told I am quite amusing when stoned. Although I do tend to order things online and forget so I'm completely surprised when packages arrive. Oh well. That sort of mistake required credit. Remember credit?
Rick and I lay on the bed together tonight, holding hands, and talking about how strange it is that we cannot do everything for ourselves anymore. For so many years we took it for granted that what needed doing, we could do. No more. Suddenly we are, if not old, then unable. Disabled. Odious word, odious condition.
My beloved and beautiful cousin Nancy had her second round of chemo today. She said tonight she was tired. Some time soon, this summer or next, we'll go to the ocean together, and talk about our family, and how great life is, and how beautiful the ocean is, and how fortunate we have been to have one another.
How fortunate we all are to have one another. There, that's my profound statement du jour. Stick around. It's got to get better.

The Moon Is Bigger in New Mexico

My brother and sister-in-law, Allen and Barbara, have lived in New Mexico for many years. I've been there to visit twice, once back in 1993, when I took our sons, JD and Drew, on a train trip across the country to visit Rick's relatives in Ohio and to visit Allen and Barbara on the way home. It's very convenient to go by train, because the train stops in their town, Raton.
The second time, which I must have blocked from my memory when I first wrote this post, was three weeks before my mother's death, when she was staying with Allen and Barbara, in 2001. But that is a story for another time.
Their home is on a hill on the northwest side of town, where they have a view of the mesas in the distance where the interstate trails off to the south, to Las Vegas, and Pecos, Santa Fe, and Albuquerque. But from their house you see "miles and miles of nothing but miles and miles," sky and mesa and the land stretching out before you.
As perhaps you can see here.
My brother took this picture the other evening, and sent it out "with apologies to Ansel Adams." I told him that no apologies were necessary, and asked if I could share the image with people, and he said please do.
So here it is, Moonrise Over the Mesa, by my brother, Allen Litchfield.

Thank You for Listening to Me Bitch

Sometimes a catch phrase catches on:
"You might be a redneck..."
"Here's your sign,"
"Would you believe?"
"Where's the beef?"
"Did I do that?"
And so on.
I have decided that my new catch phrase is, "Thank you for listening to me bitch." Last night I was talking to Rick, and every once in a while I would realize I was complaining or ranting about something, and I would say, "Thank you for listening to me bitch." He says it's OK, I do the same for him, and that's true.
It's not written into the wedding ceremony, or at least any ceremonies I've seen, but part of being married is listening to each other complain, gripe, whine, bitch - whatever you're calling it in your relationship. It's a loving thing we do for each other.
Some people will abuse the privilege. Our older son, JD, tends to rant, and as he rants he builds up a head of steam and starts pacing around the room, and after ranting and pacing for quite a while he paces right out the door, ranting over his shoulder as he goes, and you're left sitting there in the silence wondering what that was all about.
It was about bitching. I wish he'd learn to say, "Thank you for listening to me bitch." I'd feel better.
You know how it is - you marry someone, you figure you made a choice. While you may have chosen to give birth, you were only the passive container of these little aliens who became your children, and their personalities often have traits that if you'd had a choice, you'd have said, "No, thanks."
If they're 28 and living with you again and subjecting you to traits you wouldn't have chosen, like marathon pacing rants, you might wish for a little acknowledgment on the kid's part that you're doing something for him while he sputters, pops, whines, and disgorges his discontent.
Well, he doesn't acknowledge that we've done anything for him, but it's made me think that when I'm ranting about something I owe my listener a thanks, at least, and if it's my husband, I owe years of thanks for listening to me. So the least I can do is say it.
Thank you for listening to me bitch.

Setback

My husband has had a setback in his dialysis progress, which you can read about on the other blog.
I am just tired. Today has been spent digging through papers, sorting, tossing, making phone calls, answering phone calls, doing over the phone an application I already did on paper wrong, so it had to be done over.
Rick and I are both feeling a little down over how things have gone. We felt he was so close to getting onto the overnight cycler machine, which, for him, meant he was close to going back to work. Now that hope is dashed, at least for the time being.
My own struggle is with paperwork. There is so much of it. And that's all I'm going to say about that.

My Special Peanut Butter and Jelly Sandwiches

Picture by Nancy Reeder

My cousin Nancy sent a nice big Easter package with gifts and games for our grand daughter, and there was also a sealed brown paper lunch sack for me. When I opened it, out came a mini-jar of jam and a single serving container of peanut butter, and a copy of this story:

My Special Peanut Butter and Jelly Sandwiches
As a young girl I took many family trips. I have many fond memories of these trips. But it is my own special little trips close to home that I cherish and remember the most.
There were days when I just couldn't deal with things and would want to "run away from home."
My beautiful loving mom would sense the need for me to follow through with my plans. I am sure she realized it was my way of coping with what ever was on my mind that day. I would say to her, "I think I'm going to run away today, Mom." With her sparkling green eyes and loving smile, she would reply, "I can help you pack if you want me to. Would you like me to make you a peanut butter and jelly sandwich?"
Together we would pack a brown paper sack with some clothes as well as make that peanut butter and jelly sandwich.
Mom would give me a big hug and kiss, then say, "I love you," and "You are always welcome to come home."
You have probably figured out by now that I only went to the end of the front porch. She was a very wise woman.
I am 62 years old and dealing with cancer. Yes, I feel like running away, but I think I will have a peanut butter and jelly sandwich instead.

*
You can stop reading this right there if that's enough for you.

I sent this story to several friends with this added message:
My cousin Nancy is fighting colon cancer now, and she knows that my husband and I are going through our own hard times, and she wanted to cheer us up by sending us this story and the peanut butter and jelly. She did.
Her wise, beautiful, mother was my father's sister, my aunt Vivian, whom everyone called Chick. Chick had multiple sclerosis and passed away at the age of 43. Chick was in a wheelchair all of Nancy's childhood, and I can see why Nancy might have wanted to run away sometimes.
As I thought about this, I thought, you know, this reminds me of the emails that come around on the internet, and, just for the fun of it, I'm going to put this out there, and ask the people to whom I send it to pass it on to people who might enjoy it, and then see how long it takes for it to come back to me from a complete stranger who has read it and been cheered by it. Then I can say to Nancy, "Look, your story has been cheering people up around the world." And that might cheer her up.
  Probably won't hurt peanut butter and jelly sales, either.
  Are you game? Two requests: send me an email saying "thank you, Nancy" at:
shipoftuels@hotmail.com,
 and I'll forward it to her, and then please pass it along. The thank yous will tell her what an important person she is, and passing it along - well, we'll see what that does! Thank you!
blessings, love, hugs
Mary
*
Well, I sent that out last night, and as of this morning I've had over 30 replies from people saying thank you to Nancy for this story. I started to forward them to Nancy, and then realized that I would be clogging up her email inbox, so I started copying and pasting replies into a word doc. Then I copied all of them (so far) and pasted them into one email to Nancy.
My cousin Nancy is an extraordinary person whom I have loved, admired, respected, and looked up to my whole life. She has tackled life with good humor against great odds and adversity, and she still keeps plugging away – even when she'd rather run away.
As I read people's replies to Nancy's story, I found myself tearing up. That's not unusual these days; my husband is ill and the challenges of getting along are sometimes dire. But the way people pull together to provide encouragement, inspiration, and love to one another in the hard times – man, that's almost enough to make me revise my occasional conclusion that people are no damn good.
Thank you, Nancy, thank you, everyone who is being touched by Nancy. Sometimes when you're somewhere past the end of your rope all it takes is one person to love you, understand how you feel, and make you realize you're not facing your troubles alone, to help you regain your grip.
So thank you.

The Constancy Waltz

Life is not offering much in the way of fun and encouragement these days, so the thing to do is sing. So here's one of my songs.
Once upon a time, a long time ago, someone said to me, "I'm making a list of people who I want to be in the nursing home with me, and you're on it." I thought this was a high compliment, and in the spirit of that compliment, I wrote this song.
It's as much about friendship as romantic love - it's about marriage, and other challenging relationships.
I made a video last night that I am replacing with a new one. In this one I remember all the words! Yay!

A brief word about my hair: this is how it looks right after I wash it these days. It has taken two years to get it this long. I had the idea that I could be this aging hippie woman with long flying frizzy gray locks. So far, so good. Then I thought I could let it get long, and then cut off the length and donate it to one of those organizations that make wigs for people who have lost their hair for medical reasons. It seemed like the most effortless way of doing good. What could be easier or cheaper than letting your hair grow? Well, for whatever reason, it's long and some days, like this morning, I want to grab hold of it and whack it off, but I haven't yet. One of the cool things about it - people don't recognize me with long hair. Kinda fun to walk through a small town where you've lived for decades and not be recognized.
Song: The Constancy Waltz, copyright 1987, 2010, Mary Litchfield Tuel. All rights reserved.

Why Don't I Get a Job?

This question has been directed to me so many times lately that I thought I would address it.
Yes, we are in dire straits financially. Rick, my husband, who was our sole support, has been unable to work since last October 5. We have lived since then on the incredible kindness and generosity of friends and family, and what savings we had. It is truly mind-blowing, to use the idiom of my youth, how kind and generous people have been. Some have gone so far as to contribute more than once, which at this time, when we are in the gap between our resources and Rick's disability payments and my Social Security, means more than ever.
People who are not in a position to give money have given from their hearts – time and love and art and chocolate, gifts both tangible and intangible, which have carried us through.
The obvious question that occurs to many well-meaning (and perhaps some not so well-meaning, I'm not naming any names here) people, is, why don't I get a job?
The first time I was on the receiving end of this rather sharp question, I was flabbergasted. I muttered about how I couldn't work because of various physical disabilities – my crappy knee, my broken back, nerve damage, chronic fatigue, etc., none of which cut any ice with my interrogator. I should get a job sitting down. I should type envelopes at home.
“There, I fixed it.”
Now that I've been hit with the question a couple more times, I'm starting to get my smart ass together: “Oh, I dunno. I guess I'm just a slacker.”
Another answer might be to slap my head and say, “Why didn't I think of that? A job! Of course!”
Maybe as I get it more together I'll be able to put together a written response which I can print up and hand to people. This is a start on that response.
One friend suggested that I reply thus: “OK, you come over to my house and take over what I do. Fill out and copy and organize the paperwork for Social Security, DSHS, the Kidney Program, the hospital, the IRS, various doctors and utilities and whoever else is standing in line with a hand out for our identity, income, and intentions. Figure out how to pay the bills and balance the check book and buy the groceries on what money we have. Buy the groceries - make sure there's coffee and cheerios and toilet paper and paper towels - and the prescription drugs and other requirements of Rick's illness. Drive Rick to his various appointments, procedures, and surgeries. Wait while he's there, or run errands that need to be done. Cook meals, wash some dishes, keep laundry moving, sweep and vacuum floors now and then, pick up the mail, pay the taxes, licensing fees, insurance premiums, etc. Keep track of the paperwork and dates regarding the lawsuit that has been laid on us by the woman who fell off our porch and wants lots of money. Come on over and do this and whatever else that comes up – cleaning out the perennially clogged storm drain, feeding the dog, making copies and typing dictation for Rick – do all that for me, and by golly, I will go look for a job.”
Of course I am fat and 61 and half crippled and don't have a degree and don't know all the computer programs that are mentioned in the job advertisements, but what the hell, I can get some shit-paying clerical work I suppose. Maybe. I hear it's hard to find a job these days, but it's usually easier to find a shit job.
If all I had to do was go to work and come home, it would be a nice break. Unfortunately, if I had a job, I'd still have to do all that other stuff, and I'm already pretty tired.
So that's pretty much why I don't get a job.