Too Many Characters

This is probably more of a tweet or a facebook status than a “post,” but this is where I am when I’m thinking it, so I’ll say it here.

I dream of Biscuit a lot. And I miss him terribly. On PMSing days, I ruminate that he was the only one in the family (or on earth, or whatever), who REALLY loved me. When I dream of him (which I love to do), I can feel his fur, and his warmth. Very real. The only good thing that has come of this is, I sleep better. Biscuit was always in bed before me, and I would slide in between him and Jif (Jif under the covers, Biscuit on top), like sliding into an envelope. I would position my body however I needed to, to avoid disturbing Biscuit. Often, this left me considerably contorted. I did not realize how much so until I started waking up without stiff neck, hips, etc., from the awkward positions I slept in. And until I realized that I wasn’t waking up a few times a night trying to adjust my position within the envelope. (Dogs make people do crazy things.)

I don’t like being a person in a house without a dog. I will always be a person, I imagine, and always live in some sort of a dwelling (God willing), so the only thing that can make the situation better is to get a dog.

I go on PetFinder.com several times a week, for long periods of time. (Would a pit bull really be a bad idea? There are so many of them on there.) This has been my modus operandi when getting a “new” dog after the passing of an “old” dog: when the day comes that I feel wholly, the feeling that “I want a dog,” as opposed to “I want Biscuit,” then it will be the right time.

Not there yet. I’m still very much in the “I want Biscuit” place.

Well, hell, this would not have fit into a tweet or a status at all.

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Belly Flop

There’s a little “pub” near here where we go quite often for dinner. Nothing fancy, usually a salad and soup on those nights when I work a little late and we’d rather sit and talk than hurry up and cook something. You enter this pub through the bar, then make a quick turn through another door into the restaurant part.

One night last week, as we were leaving the restaurant, stepping into the bar, I felt a chilly sensation across my front middle. To be more specific, I felt a brisk breeze across the approximately 1.5″ swath of belly skin (fat) that was inadvertently exposed. See, the good news was that I have lost the tiniest bit of weight, so that the jeans were slipping down. And the bad news was that my shirt was too damned short and my gut was busting out.

Something about the breeze on my belly, and the shock of my exposure, and the wondering how many fools at the bar had noticed, tickled my funny bone and I started to laugh. Without pulling down my shirt. Which sounds odd under the circumstances, but there was a method to my madness. Jif and LG were slightly ahead of me walking out. I wanted them to see that this hysterical thing was happening, but I didn’t want to shout ahead, “Hey! Look at my belly!” (Because that would be gauche, and as you’ll see, I am anything but gauche.) So I thought, if I’m laughing (as I was) and lagging behind (as I was), when they turn around to see where I am and what’s so funny, and they see my belly hanging out, they’ll find it just as funny as I do.

So, soon they turned and saw and heard me laughing. And they grinned a little, but that really was not what the occasion called for, so I had to raise the stakes. I bent backwards and stuck my belly out, and pulled my shirt up more, and went after them! Then they started laughing like they were supposed to.

I chased them down the sidewalk and out into the parking lot, as they laughed and yelled things about how terrifying the situation was…

::tangent::Here, there was a drama within the drama. Since LG was little, our rule, in fact her very first rule, was WE HOLD HANDS IN A PARKING LOT. Now, this started when she was barely toddling, and as she got older, of course we relaxed the rule. But for some reason, it’s been revived. Just to torment her, we remind her of THE RULE. And we chase her down in parking lots and grab her hands while she screams and laughs hysterically and tries to escape from us, and we go on about “YOU KNOW THE RULE!” and people stare at us like we’re idiots or like we’re abducting her. So, yea, not only are Jif and I chasing LG down to enforce THE RULE, but my big fat belly is shining to light the way.::end of tangent::

… and I laughed so hard it’s a wonder I wasn’t peeing (because I’m not QUITE bizarre enough yet, this fat almost-50-year-old woman wielding her belly like a weapon in the parking lot of a strip mall), until I finally corner them at the car.

And they lock me out. So, I do the only thing I can do in that situation. I pull my shirt up even more and stand on tippy-toes to press my belly up against the passenger side window.

We are all laughing like hyenas when Jif finally lets me in. Sitting there in the parking lot before we pull out, in the sighing afterglow of the hilarity, I can’t help but think, “Oh. my. GOD, I hope none of my clients were here tonight.”

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Sunday Post

“Relationship is primary…It is possible to cause seemingly biochemical changes through human emotional involvement. You literally have changed his chemistry by being his friend.” — a psychiatrist quoted in “The Soloist,” by Steve Lopez

Psalm 51:10
Ecclesiastes 4:10-12

I have been thinking a lot about relationships, these past few months. Well, maybe all my life, but especially in the past few months. The things I miss about my relationship with my mother. The things we never got right. My relationship with my husband, and the things we have yet to get right. My relationship with my 13-year-old daughter, and how almost desperate I feel at times, to get that right. With adults, there are more chances for do-overs. Kids are forgiving and resilient, but with kids, those moments in time can really stick. They remember a look, a tone, a few words spoken in frustration.

The more I learn about brain development, the more seriously I take this business of relationship. Of human interaction, and of being conscious of creating an atmosphere that nurtures growth and development. There was a time when my home and even my presence (I’ve been told) supported such an atmosphere. That’s not true, now. I say this NOT to have you kind, generous folks jump up and say, “Oh, yes, you do!” I don’t need that. And I live in my house and in my head, so I know better. Illness and relationships and life circumstances have taken a toll. I am in the process of trying to climb back to that place, to that piece of my identity. And I will. Because I choose to, and because God will help.

I am thankful for the words and the actions of those who continue to help change my chemistry in the right direction.

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In memory of my Mom, who is now healthy and happy

Working on this tonight, to be shared at my Mom’s funeral this weekend

Some of my earliest memories of Mom are her washing dishes at the sink at our house in Delaware. She would wash dishes and sing. I heard my mother sing songs that I didn’t hear anywhere else. If a radio was on in our house, my father had it tuned to Orioles baseball. The music came from Mom. Years later I heard someone named Loretta Lynn and some dead guy named Hank Williams, singing Mom’s songs. They had more talent, I suppose, but they had no more heart, soul or passion than my Mom. I learned to love music from my Mom’s singing at the kitchen sink.

I learned to love books and reading from my Mom. She read to me. And she taught me how important books are. She said that if she had not married and had babies so young, if she had made different choices, she would have wanted to be a librarian. She would have wanted to be surrounded by stacks and stacks of books, instead of stacks of dishes and laundry.

I learned to laugh at myself from my Mom. As a psychotherapist now, I have to say, the value of that ability cannot be overstated. The difference between survival and defeat is often the ability to laugh at oneself.

You couldn’t be around my mother for very long without two things happening. She would feed you something, whether you wanted it or not, and she would mention the Lord. If you were having some sort of trouble, she would advise you to pray.

My mother was not as well-educated as she would like to have been, but she said a lot of very wise things that her children will always remember. She taught us, “You treat the janitor and the governor just the same, with respect.” Tony reminded me that she said, “Don’t ever take from a person anything that you can’t give back.” She was talking about someone’s reputation. She told us we were no better than anyone else, and we were no worse. She told us not to bring out candy unless we had enough to go around. She taught us the things that all good mothers teach their children: you’ll catch more flies with honey than with vinegar; if you can’t say something nice about someone, don’t say anything. She taught me that mothers will cheerfully sacrifice in order for their children to have the best. In the 60s, when schools were integrating, she taught me to get along with people who looked different from me; we used the term “colored people” then; I remember her telling me, about a little black girl that I mentioned to her, “Don’t treat her the same as everyone else; you treat her better; maybe you can help make up for the ones who are mean to her today.” As a human being, she taught me tolerance. As her daughter, she taught me to love pretty clothes and too many shoes. She taught me not to buy shoes without buying a bag to match; you’ll regret it. And no matter how bad life looks, or how bad you feel, get your bath and fix your face and smile. I teased her that her motto was “It doesn’t matter how you feel as long as you look good.” And she surely did look good. When I was a little girl, I thought my mother was as pretty as any movie star. My father thought so, too. On my wedding day he told me, with no unkindness intended, that I was pretty, but not as pretty as Nell.

I learned how to love from my mother, and I hope to some day be as good at it as she was. Not likely, though. I believe she’s been awarded her gold medals by now. If my mother loved you, like she loved her husband, children, grandchildren, and others, then you were loved beyond all reason and good sense. I can’t help but think that’s very much how Jesus loved; like Mom.

My mother was the Queen of the Second Chance. No matter what her husband, children, nieces, nephews, in-laws, out-laws did, she never wrote them off. You always got another chance. No matter what kind of fuss you had with her, you could come back the next day and get something to eat, a place to sleep. Her door and her heart stayed open all the time. We could learn a lot from her example of forgiveness.

My mother wasn’t perfect, of course. She and I got on each other’s nerves the way only mothers and daughters can. I will also say that she loved her daughters-in-law the way she loved me, which includes getting on their last nerve sometimes. That’s OK. One thing that I think has always spoken well of Mom is that even her sons’ former wives love her and continued to ask about and keep in touch with her.

Sometimes Mom didn’t know when to quit. That’s a trait most of us have inherited from her – talking, working – you name it, we’ve probably done a little or a lot too much of something. I heard about a time Mom traveled North with two of her nieces, whom she loved very much, and she talked so much they stopped and bought her a book so she’d be quiet for a while. She didn’t get the hint. She stopped chatting and started reading out loud to them!

And Mom never quite caught on to the concept of political correctness. For example, if she saw someone whose nationality or ethnic background she wondered about, she would not think twice about asking them about it. She would say, sweet as could be, “Now, honey, just what ARE you?” I would cringe, but the person would give her their answer, also sweet as could be. I guess people could tell that as politically incorrect as she was, her spirit was never malicious.

Thank you for being here to honor my mother. I hope she is pleased with the things we’ve all had to say about her as we’ve remembered her here today. If we remember to talk to Jesus regularly, and be sweet to each other, and aren’t afraid to laugh, then we will keep her memory alive. And ladies, if we always have a bag to match our shoes.

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Addictions

I’ve been asked to think about my mother’s eulogy. It occurs to me that she might be a “forgivaholic.” Which, if you’re going to be any flavor of “-aholic,” is probably not among the worst you could be. I don’t think God will say to anyone, “You forgave too many times! You gave too many second chances.” That would be a pot and kettle kind of situation. I think.

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Not to be Confused with the “Blue Plate Special”

I recently sent out an email to some IRL friends with the subject line, “because I didn’t have quite enough on my plate.”

My pastor wrote back that she hoped I’d be able to feel not so much that my plate was full, but that my cup runneth over.

My Mom remains in the hospital. She is not going to get better. At least not on this planet. She is no longer eating, and her kidneys are failing. It may be hours, it may be days. I don’t think weeks are likely, but who knows?

I am attempting to help plan a funeral from 500 miles away. My crazy drug addict brother telephones regularly to curse at me and blame me for anything he can think of — the fact that my mother won’t eat, is in pain — whatever doesn’t sit well with him is somehow my fault. He routinely makes threats against me and my family. Yes, I have been in touch with law enforcement.

On Friday I took Biscuit to the vet. He’d lost a little weight, and his appetite wasn’t good, but mostly, I just had a feeling something wasn’t quite right with him. On Saturday, I learned that he was suffering from advanced diabetes, with dangerously high blood sugar levels. He was admitted to the emergency animal hospital where they would regulate his blood sugar, then send him home, after teaching us to give him twice daily insulin injections. They said he’d be there 24-48 hours.

Three days and over three thousand dollars later, Biscuit’s blood sugar is still as dangerously high. The decisions we must make regarding him are not unlike the decisions we had to make regarding my mother. What, and for how long, do we treat? With my mother, we did not consider money. Very sadly, with Biscuit, we must. The expense so far has hit us very hard. We’d put that behind us quickly, if it had helped him. But it didn’t. We are waiting to hear from his regular vet now, just what might be possible, or reasonable.

I do continue to struggle with WTF Disease/lyme. I am much improved; and still somewhat disabled by it. I remain in treatment, with monthly tests and doctor visits.

A couple of people have said that things can’t get worse. Oh, yes they can. I never think that, because I know very well there are worse things that could happen. Still, this is plenty bad. In many ways, my cup runneth over, it’s true. But it’s also true that right now, my plate is full.

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What I am doing these days when I’m not blogging

I’m emailing. And phone calling. A lot. Here’s this afternoon’s emails. I put them in normal prose order, i.e., you don’t have to read them bottom to top, as you would if I’d lifted them directly from email. The woman corresponding with me is a 70-something cousin, I don’t know very well. I’d like to, though. This isn’t the first time she’s reached out to me very graciously.

Date: Wed, 20 May 2009 18:43:15 +0000
From: susie@email.addy
To: sharon; judy; linda; deane; stacey; trish
Subject: follow-up to previous email

Mom continues to refuse the feeding tube. She has talked with Mike and the doctor and appears to be competent, in the doctor’s judgment, to make that choice. She is fully aware that it will lead to her death. She says she does not want to go through any more medical procedures, does not believe she would get well. She talked with Mike about her life and her children, and she appears to be lucid.

The doctor says since she has made this decision, she will be placed under “palliative care,” and they will keep her as comfortable as possible. He said if she wants to try to eat, she can, since pneumonia won’t make a difference one way or the other. I suppose there’s a slim chance that she will somehow start swallowing again when they let her try to eat, but that’s not very likely.

It goes without saying, this is very difficult to hear.

Susie

****

From: Deane
To: Susie
Sent: Wed, 20 May 2009 23:29:50 +0000 (UTC)
Subject: RE: follow-up to previous email

Dear Susie,
I’m so sorry to hear of this latest set-back. This has to be heart breaking & frustrating and hard to accept for you children. I do understand your feelings and hope I can help you to understand your Mom’s. I’m not as old as your Mom but I am a sr. citizen. Mother & grand-mother. I love & value life & want to be here for my family but only if I can take care of myself & be independent. I don’t want to be a burden on my family or society. There are some things worse than death & sometimes what we have to go through is one of them. Your Mom has endured numerous illnesses, surgeries, etc. so we know she is a fighter. But when you get knocked down too many times, you get tired of fighting, & it’s harder to get back up again. I’m sure she feels like she has lived a long & full life but old age is hard, & she won’t be able to take care of herself. I have discussed this with my sister, Margaret, & cousins: Rena, Willa, Kaye, & Joan. We are all in our 70’s & 80’s. We all agree that we understand & respect what & why your Mom is making the decisions she is. I’m grateful that she is lucid & can make this difficult decision for herself. She is NOT MAKING A DECISION TO DIE. She’s just deciding not to put herself through more medical & painful procedures, to prolong her suffering that may extend her life but not an acceptable quality of life. I admire her bravery & feel that I would make the same decision if I were in her situation. I think she’s leaving it in God’s hands & not the Dr’s. Once again, I’m giving unasked for advice & hope its received as a comfort because that is my intention. Our whole family will be praying for all of you as you face the difficult days ahead.

Love, Deane
Please share this with your Brothers, if you think it might help.

****

From : susie
Subject : RE: follow-up to previous email
To : Deane
Wed, May 20, 2009 08:12 PM

Deane, thank you again. I do appreciate what you say here. I spent about 45 minutes on the phone this evening with my pastor, and she says the same thing. When I saw that you wrote “she is NOT MAKING A DECISION TO DIE,” I had to go back and look at my email to you, to see if I had used that expression. I didn’t, but you were absolutely right, that is the thing that has been troubling me. I needed to sit with it, and pray with it, and cry with it, for a few hours. I won’t say it’s easy to accept, but I do accept it, and I am very thankful that she is still clear enough to make the decision, and not leave it on one of her children to make it. I will pass on what you’ve said to my brothers.

Now, having said all that, you won’t believe what happened after all the papers were signed, refusing the feeding tube, and the palliative care people came in: SHE ATE HER DINNER. She is full of surprises, my Mom. Don’t let it be said that anyone has her figured out. I was laughing on the phone as Mike told me about it. He fed her the pureed applesauce, sloppy joes, and something else. She choked once, and they suctioned her, but he said she ate enough for an actual small meal. I do not know what God has in mind here. It’s a rollercoaster. I don’t dare get my hopes up that this will be a turning point; but I am thankful that she had the pleasure of tasting another meal, and her son had the honor of feeding it to her. I am grateful for your friendship, and for getting to know one another better, through this crisis.

Love,
Susie

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A Mother’s Day

For the second time in three weeks, I walked up to my mother’s bedside, in a place not her home, and my heart sank. “Oh my God, this is it. She is dying.”

It’s been two weeks since my last visit, and she’s so much smaller. My strong and busy mom is a tiny, fragile thing. There are tubes and hoses where her smile, her laugh, her voice should be. I slump into the chair by her bed and stare through tears at her sleeping frame. Jif comes to my side, hand on my back. He’s alarmed, too, by the deterioration. “It’s hard to see her like this,” he affirms, voicing what I can’t.

Then her eyes flutter. I step to the bed and beckon LG to come stand beside me. “Hi, Mom. It’s Susie.” But she knew that. Her beautiful (still so beautiful) blue-gray eyes open wide. Then her mouth opens, below the nose tubes and above the trach hose, into a wide grin.

Then she sees LG. It takes a moment, because LG has grown so much. But when “Granny” recognizes her youngest granddaughter, her eyes sparkle, her grin gets even bigger, and she reaches out a bruised and swollen hand. She’s suddenly not dying anymore. Not even close. Waving to Jif, motioning toward the chairs, pointing at . . . we never did figure out what. Her mouth moved, but we heard no sound. We could lip-read “I love you,” and we could guess that I am supposed to lose weight and Jif should get a haircut . . . she was momming. She was telling people what to do. She was alive.

It’s the third hospital she’s been in, in three weeks. This is a rehab kind of place; she may be there a long while. Or maybe not. Each time she’s been moved, we’ve been asked the questions. They always go something like this: “Your mother has a DNR (do not resuscitate) order, but we need to get family consent as well. If her heart stops, do you want us to resuscitate her?” Four weeks ago, I would have said, “Hell, yes, resuscitate her.” People’s hearts stop and start all the time, and they go on living perfectly fine for years.

That was before she had the trach tube for breathing, the nasal feeding tube for nutrition, the various IVs, the other nose tube for suctioning her stomach, the urinary catheter, the colostomy bag, the open surgical wound in her abdomen that isn’t healing. She doesn’t even know she has all these things. She knows all of us, her children and her nieces and nephews. But as of 48 hours ago, she didn’t know where she was. After visiting pleasantly (as pleasantly as a newly silent person can) with my cousins, a device was placed on the trach tube to allow minimal speech. She told them she loved them, then said, “I think I need to go to the hospital now.”

Back to that question. If her heart stops . . . . I want them to stop asking us that question. I wish they would and could just take her word for what she wants. She’s the Mom; she should be in charge, not the children. This time we haven’t answered. We stall, we hide from the asker. “I have to talk with my sister and get back to you.” “Let me call my brother, as soon as he’s home from work.”

How can I say that I don’t want her heart to beat? I want it to beat forever. Her heart loved my father. That’s why we’re all here. Her heart has broken, has mended, has loved her children, her in-laws, her parents and siblings, the neighbhor kids, her sons’ ex-wives . . . it will have been on the job for 86 years this Wednesday. How can they ask us to agree to its retirement?

My brother, Mike, takes LG’s hand and starts to tease her about the midnight blue nail polish. He pulls her to the bed to show Granny. “Mom, look at this! Are you going to let your granddaughter go around looking like this?” Mom focuses on the nails and seems just the slightest bit startled. Then she smiles and her eyes twinkle. She waggles a finger at Uncle Mike, as if to say, “You leave that baby alone. She’s in style.” We know that’s what she’d say. But in the midst of her starting at the shiny blue nails and her scolding Mike, the bells and whistles sound. I think it was the pulse-oxygen monitor, loudly beeping and chirping.

The 7 of us gathered there in the tiny room for the odd little vigil/party combo laugh and tease LG some more. “Look what you did to Granny with those nails!” “Her other grandmother had the same reaction last night; she just wasn’t hooked up to the alarm bells!” Mom shakes her head to tell LG not to pay any attention to those crazy people. LG’s aunt tells her that if Granny could, she’d probably want her own nails painted that color. I reassure LG that Granny was a fashionista back in the day; always wanted to try the latest thing. I wanted LG to know that Granny was not disapproving of her; quite the opposite.

When I’ve thought about DNR orders and living wills and the like, for myself, I’ve thought, “What is the criteria for whether life is worth living?” And I’ve thought that it has to do with joy. If I can experience joy, and if my presence can somehow bring joy to people around me, then I want to stay alive.

I don’t know much about DNRs, about ventilators, quality-of-life politics, living wills. But I know that when we were teasing LG and Mom, gathered there around Mom’s hospital bed, there was joy. I know the expression in my mother’s eyes, and on her silent mouth when she first recognized LG by her bedside. That was joy. I know how I felt, as a mother, at the realization that my child’s presence resurrected my mother, if only for a moment. Just for that moment, joy.

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What is wrong with your candidate?

Caution: It’s getting political up in here…

Some of you know this, and it may surprise some others: I love politics. I love political conversation, debate, inquiry. I always have. From the time I was little, I watched the conventions and I SO wanted to grow up and be a delegate. I wanted to carry a sign with my state’s name on it, and wear a red, white and blue hat, and (be still my heart) have thousands of balloons drop on my head.

::tangent::I have, in recent years, put forth the theory that the party who delivers the best convention balloon drop will be the winning party come November. In the last election that was true. The Dem balloon drop suffered serious technical difficulties. This year . . . we’ll see::end tangent::

And even with all my political preoccupation, most of the people who really know me and talk to me every day don’t know which candidate I support. (This might not be all that surprising this year, because I don’t either; still working on that one.) Sometimes in political discourse, I argue the position opposite from my own, just to make sure that I can. My mother is a loyal Democrat; my father was a proud Republican. I suppose that’s why I find it perfectly natural to be “mixed,” when most people around me are acting like donkeys or elephants. I grew up in a house where two people held opposing political views yet managed not to hate and despise one another (most days, and even when they did hate each other, it wasn’t over politics); and both of those people had vices and virtues that became important to me, either for purposes of avoiding or imitating. (My balancing act on the political fence is a large part of what will likely always thwart my childhood dream of becoming a delegate. They tend to be gung-ho types from either party.)

In my work, we talk about “all-or-nothing thinking,” or “black-and-white thinking.” These terms refer to the the way of thinking that says, “I am all right and you are all wrong.” It also takes the form of “if I disagree strongly with you on one or more ideas, I am right and you are [dangerous, delusional, stupid, evil, fanatical, rigid, close-minded…fill in the blank]. Psychotherapists call this kind of thinking a “cognitive distortion.” In the vernacular of 12-steppers, “stinkin’ thinkin’.” Again, in my line of work, this type of thinking is regarded as wholly irrational, and antithetical to progress and healthy human development. As you might guess, I’m concerned for the mental health of our nation right about now. Because, while I do love politics, I am sickened by the written and verbal expressions of this cognitive distortion that is so much a part of our daily lives now.

The more I encounter groups of people who venomously defend their own candidates while denigrating others, the more I have to seriously question whether I want to affiliate with such people. Regardless of which candidate you support, or whether you haven’t yet decided, I would like to ask you to ask yourself this question: What is wrong with my candidate?

If you are supporting someone whom you believe is the one person who can save us, I believe your support is misguided. You will end up becoming disillusioned, and your candidate, if elected, will ultimately fall short and be unfairly judged. He’s not going to save us. Whomever he may be. And what’s more, there’s a hell of a lot wrong with him. Because he’s a human being. I believe we’ll all choose much more wisely and realistically if our support is tempered with a rational understanding of what is wrong with the guy: where are his weak points? What mistakes has he made? What are his character flaws? Where does he need expert advisers to fill in the gaps? Can I list the really stupid things he’s said publicly during this campaign? And so on.

I can make a fairly long list of what’s wrong with both candidates. And in my opinion, if you are whole-heartedly supporting someone for whom you can’t make such a list, then I don’t think you’re being a very good donkey or elephant; I think you’re being a sheep — following the voice of some master without thoroughly investigating where you’re going. Do a little (balanced) research. Read some different opinions. Make a fully informed, not entirely emotional choice; that’s all I’m saying. A flesh-and-blood human being will win the election. And it’s very likely that in some areas, at some point, he’ll profoundly disappoint some of his staunchest supporters. And he still may be a good President. But he won’t save us from ourselves.

::tangent::This is one of my soapboxes in recent years. I think we Americans behave childishly in some respects, expecting others to do the homework, make the decisions, etc., that we should take responsibility for making. Take, for example, the recent financial headlines. Both sides have placed blame on the other, for some part of this. But it wasn’t them. Either of them. It was us. It was we who bought houses, cars, vacations, shoes, way beyond what we needed or could afford, and ended up not paying our bills. We can argue about whether the problem trickled down from deregulation or trickled up from obscene materialism, but Americans at almost every socioeconomic level had a hand in this mess. I am embarrassed to admit that two times in my life, I have gotten into credit card trouble. As I recall, one was during a Democratic administration and one was during a Republican one. Not for one minute was it ever the President’s fault, nor the fault of any member of Congress. It was all mine. Our values, our expectations, our work ethics, are out of whack. It is a problem, but it’s not one that a President can solve. We’re on our own. The good news about accepting responsibility for your role in a problem is that it also means you have some power to make it better. If the problem is all someone else’s fault, you’re screwed. You’re at the mercy of what “they” decide to do. Some people prefer that point of view, because it absolves them of personal responsibility, and always gives them someone else to blame. If you’re one of those people, good luck with that. Me, I’d rather understand how I contributed to the problem and try to do my part to contribute to a solution. I like to have something I can do. ::end tangent::

I’m going to risk beheading here by saying that the most hateful, the most all-or-nothing, the most offensive rhetoric that I have heard or read is from Democrats. It may be that I just haven’t read enough of what Republicans have to say. But I did ask some very conservative people to direct me to what they think would be the most conservative websites. And I took their recommendations. And while I found lots of policy disagreements, I didn’t find personal attacks. I didn’t find people threatening to leave the country if Obama is elected, because our future would look so bleak.

Jif and I talk about this phenomenon quite a bit, because it’s really disturbing to me. After reading a particularly extremist anti-McCain blog post recently (McCain was pictured whispering in little Piper Palin’s ear, and the commentary accused him of pedophilia), I said to Jif, “Why are they behaving this way? What do they get from sinking so low?”

He said, “They believe they’re saving the planet.”

“Saving the planet?”

“Yea,” he answered sadly.

I’m gonna go out on a limb here and say that it isn’t hatred that’s going to save the planet.

Part of why I don’t get so bent out of shape at the idea of either candidate winning the election is because of my faith. Faith in God, yes, but faith in this country. I so treasure the Constitution. It is an amazing document that has stood the test of time and will continue to do so. Of course we disagree among ourselves about its interpretation; that is part of its design. It works! I have faith that no one party, and certainly no one person, is going to “ruin” our country in four or eight years. I don’t believe it can happen. I have more faith in the American people than that. All of them. All of us.

I recently said to Jif how I feel like such an alien (talking outerspace, now, not immigration reform) because I love the fact that we are roughly divided in half on our candidate selection, according to the pollsters. Most elections in recent memory have been this way. I think that’s part of what makes us great. Taking into consideration all the various leaders for whom we vote, we have the potential to balance one another perfectly — to not go too far off the path in either extreme direction. Imagine the alternative to the current statistical dead heat: imagine living in a country where the polls were 90% to 10% in favor of one Presidential nominee. Now imagine being one among that 10%.

I’m staying here, happily, thankfully, no matter who is elected. I have found potential good in both candidates, and I’ll celebrate and support that. And I’ve found potential chaos in both, and I’ll pray for the new President regarding those areas, and I’ll take responsibility for not adding to the chaos by my personal speech or behavior.

And I’ll stay here. And God willing, live to vote another day if we don’t choose well this time.

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put the lyme in the coconut . . .

At long last. Rather than trying to write you a post, I have copied a letter that I’m sending out to interested IRL friends. As you’ll see, I have no idea whether this is legit, nor where it will lead, but here we go:

Dear Friends,

I’m sending this out to all those who’ve been aware of my health struggles over the past couple of years. It appears there may be a diagnosis, and the beginning of a long road of treatment. It is all tentative, and controversial. I am normally a very private person, but I wanted to share this information because it may be of help to someone else. As I have learned, much to my sad surprise, there are many, many people who are suffering with strange symptoms that go undiagnosed and untreated. I feel certain that someone reading this will know of someone who may benefit from what I’ve learned.

Let me also say that I am not sending this out as some medical activist or advocate. I have no way of knowing, at this point, whether the information I will share at the end of this letter is accurate, or whether it is a product of medical charlatans. I simply don’t know. This is just my story. If it can be of some help to someone else, that is a very good thing.

A brief recap of my symptoms over the past 2+ years: first, beginning in
October, 2005, kidney stones. I cannot say whether they were related to my current illness, but I do know that since the treatment for them, in March of 2006, I have not been well.

Initially, I had a low-grade fever for over 6 months. Gastrointestinal
symptoms; rapid weight loss, accompanied by bloating; difficulty swallowing, then difficulty speaking. I felt that I was choking all the time, a feeling that I still have. I was lethargic for weeks, and could not wake up after sleeping. I felt as though I were heavily drugged, although I was taking no medications at all.

Next came neuromuscular symptoms. In the summer of 2006, I began noticing that my hands would “freeze” into claws if they’d been in a certain position for even a few seconds — grasping the steering wheel, carrying a purse (this is one symptom that has entirely resolved; it happens very rarely if ever, now).

Then, while taking Lily and a friend out to lunch after vacation bible school, I became stuck on the sidewalk. Couldn’t move my legs. When I was able to move, after several seconds, I couldn’t raise my arms to open the door. Terrifying. Following this episode, I’ve had muscle weakness in arms, legs, throat, tongue and neck, that continues through today. The weakness ranges from a tired feeling, to the inability to carry a dinner plate to set the table, to having to put the car in “park” at a redlight because my leg is too weak to keep the brake pressed down for the duration of the light.

I went through several months of stumbling and fell down a number of times. Thankfully, although some level of weakness is present daily, I haven’t had a bad fall for nearly a year, now.

Throughout the late summer, early autumn of 2006, my hair began falling out. On my pillow, in the shower, left on any upholstered chair I’d sit in, all over my clothing. My hairdresser of 20 years, who knew I hadn’t been well, told me later that she assumed from my appearance that I’d been undergoing chemotherapy, due to the thinning of my hair, followed by the fuzzy new growth.

Also during this time, my ribs became terribly painful. So much so that I couldn’t sit in a hard chair, or a church pew. I’d wake up with a yelp at night, from having rolled over and been hurt by the pressure of the mattress or my own arm. This symptom comes and goes, to this day.

In January of 2007, the twitching began. This, too, persists through today. Sometimes it’s minor, like most people experience from time to time — an eye twitch, a thumb twitch. More often, though, it’s almost violent — I can watch muscles — biceps, forearms, thighs — jumping for minutes at a time; it’s sometimes painful and always tiring.

Just after the twitching came the pain. It started in my arms. I don’t even know if it’s considered muscle pain, nerve pain, or what — it feels like my bones hurt. I can’t count the times that John and Lily have microwaved a heating pad for me to wrap around my arms while I sit and cry. The pain was confined to my arms for a long time, but now I think of it as my entire skeleton hurting. Mornings and late at night, my spine and hips are very painful. I have never been much of a sleeper, but now I am awake sometimes for three and four days at a stretch, not always from pain, sometimes just from unexplained insomnia.

I’ve had periods of confusion, the inability to recognize my own street, loss of vocabulary. Just after Easter of this year, I developed tinnitus. Sometimes the ringing in my ears is simply background noise that I have gotten somewhat used to; and sometimes it is so loud I cannot hear the television or participate in a conversation.

At last count, I had seen over 20 doctors. I lost count of the tests and various procedures I’ve had. The only things that showed up irregular in all the testing were a couple of nutritional deficits, and nothing that would account for these symptoms. There were speculations of MS, ALS, many neurological disorders, viruses, autoimmune disorders — nothing seemed to fit entirely.

I was tested at least three times for Lyme Disease. Tests were always negative. I have no knowledge of having been bitten by a tick, never had a bullseye rash, none of those things that one associates with Lyme Disease. Over the past two years, I’ve been offered enough drugs to open a pharmacy, by people who (like most doctors, it seems) were willing to medicate my various symptoms with no understanding of their source. I’ve been offered botox injections in my throat, and a procedure to stretch my esophagus, in an effort to ease the choking — again, with no diagnosis. I declined all of these treatments, because I remained convinced that someone, somewhere, would know what was wrong with me, and I feared that medicating specific, isolated symptoms would make diagnosis even more difficult. I did receive acupuncture treatments for about 8 months. They did no harm, and sometimes offered temporary relief of stress, if nothing else. But I was not getting better.

Finally, several months ago, I gave up. I was tired of telling my story to new doctors. I knew that literally hundreds of people were praying for me, and that would have to be enough. I figured I’d either just get better, or I’d get much worse so that someone would finally recognize what I had, or I’d stay the same and learn to live with it one day at a time, as I have been doing.

Then, in the spring of this year, I started getting emailed newspaper articles from people who knew of my story. One person was even kind enough to scan entire chapters of the novelist Amy Tan’s book, in which she recounted her 7-year struggle with an illness that sounded very much like mine. Someone John knows sent him a link to information about a film that I will give you here. All of these articles, books and film are about Lyme Disease. The illness that some docs had suspected, but for which I’d consistently tested negative. I learned from the new information being sent to me that there is a small, but growing medical community (called “lyme-literate” docs) who believe that the standardly administered tests are unreliable, and that the diagnostic guidelines established by the Infectious Diseases Society of America (IDSA) are inaccurate and inadequate. They also believe that many, if not most people who have Lyme Disease never experience the bullseye rash, and have no knowledge of having been bitten by a tick.

All of this time, I had dismissed the possibility of Lyme Disease, because of the negative tests. No one told me they weren’t reliable. With this new information, I found a local doctor who is lyme-literate, and went to her. Because she practices outside the scope of accepted standards, she does not accept insurance (or perhaps more accurately, they do not accept her). And she sent my blood to a lab in California that is not covered by my insurance.

Yesterday I went to her for results. Most tests came back negative. One, for the presence of protein that would indicate Lyme infection, came back positive — by the standards of the International Lyme and Associated Diseases Society — the folks who call themselves “lyme-literate.” By the standards of the IDSA and the CDC, my results are negative, falling short of their diagnostic criteria. The doctor said she is absolutely certain that I have Lyme Disease.

I do not know. But I have decided, with some apprehension, to begin the course of treatment that she recommends. For now, it is massive doses of various antibiotics, plus supplements to help counteract the negative effects of the antibiotics. For now, the treatment is oral, although she has advised me that daily IV antibiotics are not uncommon during the course of this type of treatment regimen. More antibiotics will be added over the course of several months or (God forbid) years. She says to expect at least 8 months of treatment. No traditional practitioner would approve 8 months of heavy-duty antibiotics, for a diagnosis that can’t even be confirmed, as far as the mainstream medical community is concerned. It’s very confusing and confounding to me. I am not one to take unnecessary medications, or any kind of medications, if I can avoid it. But I’ve lost a lot of time, and a lot of my life. I’ve missed activities with Lily, time with John, vacations, important family events, good times with people I love. I’ve had to close a private practice it took me years to build. I feel it’s time to take this risk.

I won’t go into all the reasons that it’s a bad idea to take antibiotics you don’t really need. The short version is, I’m likely to become more ill, in some respects (last night, the nausea was horrendous from my first dose), and the risk of becoming immune to a number of very valuable antibiotics that I may need in the future — particularly if it turns out that I actually do have one of the neuromuscular diseases that has been speculated. I have always been prone to pneumonia, and there are hundreds of documented cases of people who were treated by lyme-literate docs, who did not recover from their illness, and later died from pneumonia because the antibiotics that should have cured them had been overused. All that to say, this is not an easy decision, nor one that I make lightly.

If you have been praying for me, I thank you from the bottom of my heart, and ask that you will continue just a bit longer. Pray that John and I make wise decisions and get good counsel, and that I get my health back. As most of you know, this time has been very tough on John and Lily. In many important ways, they’ve been living with an entirely different person than the one they knew up until two years ago.

If I haven’t already overloaded you with information, here is a link to a YouTube clip about a film recently produced by Lyme Disease activists. I saw myself in many of the stories in that film:

Lyme Disease movie YouTube clip

And here is a link to the website of the film, where there are links to much more information:

Under Our Skin

Oh, one more curious bit of information. As many of you know, I searched for a year or more to find some link between my progressing illness and the lithotripsy treatment for kidney stones. I could not escape the belief that I was fine (except for the stones) before that, and sick as hell after that. My doctor says that in her experience it is very typical to see someone who has carried Lyme Disease for years, but only manifested symptoms after the body experienced some sort of traumatic event. She said it is often a minor car accident — she cited someone who was rear-ended in an accident that caused $300 worth of damage, as an example of how minor it could be. She believes that the lithotripsy may well have been that kind of trauma for me, that weakened my immune system and triggered the dormant Lyme Disease to overtake it. Is this medically, scientifically sound? I have no idea. I do know that before the lithotripsy, I was well, and since then, I have not been.

If you know and love someone who has persistent, unexplained symptoms — and they could be in absolutely ANY system — digestive, neurological, endocrine, rheumatological, ANYTHING — it may be worth getting tested for Lyme Disease. Short of going to a lyme-literate doctor, people should ask their family docs for the Western Blot test — it is covered by insurance, done by standard labs, and (I’m told) more accurate than the tests that are usually ordered to rule out Lyme Disease.

Thank you for “listening” here and for your prayers. You’ll never know how much they’re appreciated. I absolutely do believe they are working — not on my timetable, or in my ways, but then . . . Isaiah 55:8-9.

Love,
Susan (Susie, Sue, depending upon who I am to you!)

P.S. This just in! The IDSA is apparently willing to take another look. Those of you who are docs or know someone who is and might be interested in this topic, please pass this on:

a call for doctors to be on a Lyme Disease guideline review board

So there you have it. When I write my book about WTF Disease, I will dedicate it to you, Ratsasstafarians. I wish I could remember all those of you who’ve suggested Lyme Disease. And when you did, especially early on, I thanked you and told you I’d been tested and that wasn’t it. I know there was John, and Karen and I certainly know Amy, whose sending me that Amy Tan excerpt (in which I felt I was reading about myself) gave me the energy to try one more damn thing.

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