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Sunday, February 29, 2004

Saturday update

She is still gradually and continually improving. She was able to open her mouth enough that I could brush her tongue and the inside of her teeth with a special toothbrush, and she had enough control that she didn't reflexively bite down and trap the brush. It doesn't sound like much, but being able to clean her teeth is really important.

Therapy is much lighter on the weekend, to give patients something of a break. Linda had 1/2 hour of speech therapy at 11:30 and 1/2 hour of physical therapy in the afternoon. Most of the rest of the day was visiting or resting. She had a lot of visitors which tired her some, but not too much I think.

Because of her success on Friday with the plexiglass letter board, I went to the store and got supplies to make a more permanent one with dark letters. It's pretty large, 24in by 18in, and has 2in black letters afixed to it. I considered going smaller, but Linda seems to prefer the large letters and 18x24 is a stock glass size at Lowe's so I didn't need help getting it cut. Sometime when I'm not trying to catch up on sleep I'll post a mockup in PDF so you can see what it looks like.

The most important point is that it worked quite well. We were able to spell quickly and accurately, something that has been difficult as Linda has improved. As she uses her eyes for more normal things, like looking around, it has been harder to read yes and no. Yesterday she spelled I WANT ICE CREAM. I asked her if she wanted to spell anything else so she spelled PEPSI. I asked her if she thinks of anything but food which made her laugh.

Friday, February 27, 2004

Dinner alone.

It's a bit strange eating dinner by myself, although not really that difficult. I sometimes used to go for lunches by myself, but I have rarely eaten in the evening alone.

This evening I was pondering a deep (bottomless actually) glass of Mountain Dew when I realized that my 24 hour headache was probably a migraine. I know some will have morbid thoughts that this all started with what we thought was a migraine, but I didn't actually go down that road.

I was thinking, rather, that a nice cure for a migraine is a bit of pizza and lots of Mountain Dew. People talk with despair about the headaches associated with caffeine withdrawal, so I started thinking back to see if I have been eating too much fruit and not enough coffee. Maybe, but thanks for that last fruit basket anyway.

I can't go many minutes without thinking about Linda, and it occurred to me that she hasn't had any caffeine for three weeks today. She wasn't a heavy coffee drinker, but probably regular enough to explain why she's been asking for Tylenol lately. I wonder what life must be like to have perfectly uniform, good-for-you meals delivered straight to your stomach. Aside from the "not eating" thing, people just aren't uniform like that.

I know how cranky I would be if I ate perfectly well all of the time. Part of life is not eating well sometimes.
Hey everyone.

I know I haven't done much updating of late. The kids had homework to do last night, and I've had a headache for the last 24 hours or so. It seems to have been fought back for a bit by a bottomless Mountain Dew at dinner tonight.

Linda is still making progress. No new skills really, just improvements on what she has. Her left leg kicking is getting stronger. She can extend the knee pretty much fully and has reasonable strength retracting it too. She can turn her left foot in several directions (wiggle your foot and you'll realize it has many degrees of freedom). She can kick her right leg some. It is about where her left was a few days ago.

She can hold her head up well and is getting better control there. She can shake her head pretty reliably for "no" now. Her "yes" is still ambiguous. She spends a good bit of time working on middle body "trunk" strength and control. And time in the standing frame, of course, to build strength and stretch her calves.

Her speech therapist is working on a new letter board that requires less yes/no decisions (remember, yes is ambiguous right now). It will be clear with letters you can see from the front and back. The case worker, it turns out, has worked with a patient like Linda some years back and has had some really good ideas for us. He used a board like this effectively. Linda's progress has been so good that she is hoped/expected to be speak before we're done, but she really should have a way to communicate in the meantime and this looks pretty promising.

I didn't actually see Linda this morning because of my headache. I arrived at about 2pm and she was crying, although not as heavily as sometimes. I was able to cheer her up by telling some funny stories and jokes. Pretty soon she was laughing and smiling. I'll share one of the jokes which came to me originally in a chain letter but has been one of my favorites of all time:

The mind of a 6-year old is wonderful. First grade...true story:

One day the first grade teacher was reading the story of the Three Little Pigs to her class. She came to the part of the story where the first pig was trying to accumulate the building materials for his home.

She read: "And so the pig went up to the man with the wheelbarrow full of straw and said, 'Pardon me sir, but may I have some of that straw to build my house?'" The teacher paused then asked the class, "And what do you think that man said?"

One little boy raised his hand and said, "I think he said...'Holy crap! A talking pig!'"

The teacher was unable to teach for the next 10 minutes.

Many thanks to Natalie Trent and Laura Mann who are taking care of Don and Ellie on Monday and Tuesday nights. That schedule is great, and I didn't mean to suggest any changes for it!

The schedule I was referring to is for Wed, Th, and Fri.


I know Don will be in town today, probably back to Columbia this weekend, but I am not sure of his plans from here forward. It seems to me, last I understood, that he will resume some of his Truman responsibilities, while traveling back and forth to Columbia.

At this point, I have not established a meals schedule because I wanted to talk to different folks, including Don, and I appreciate everyone's input.

In order to provide Don with the flexibility he needs, what I would suggest is that people use this blog comments system to sign up (when the mood strikes) to deliver or host a meal (even frozen meals that Don can keep ready would be great). Then, Don will know what his options are, but will not be locked into a schedule that is made months in advance.

Any feedback, suggestions, criticisms, comments, or praise ;)?



p.s. Every day I get more donations to help the Bindners through this. There are so many I can't thank you all in this forum-- but I'm overwhelmed. Thank you.


Thursday, February 26, 2004

I called Don, and Linda didn't want him to stay on the phone long (I had him ask her). She kept calling the nurse (she can move her foot and use the call light now!) so he figured out that she wasn't kidding after the third or fourth time of thinking she was just doing it because she can do it (he kept cancelling the call). She is smiling now-- it hasn't even been three weeks! Don is confident she will walk again, and so is Linda. The main concern right now seems to be talking.

He says she cries during speech therapy every time, which exhausts her. I said, "Does she do it because that is when she is best at vocalizing?"

He asked her, and she said yes! He seemed really surprised by that, but he often says he needs a woman in the room...

Most stroke victims are still in the hosptial at this point and she's been in therapy for a week. All of the doctors and therapists are thrilled. The social worker came by to kind of catalogue their assessment of Linda today, and said it's normal that her arms are lagging behind-- the legs come back first.

Locked In. Locked In, my ---! Blankety blank, that's so irresponsible.

Don called this stroke victim he read about on the web Kate, I think, she lives in St. Louis. She was really happy he called. She seems very positive about Linda. Apparently, she was worse off than Linda was-- I've mentioned this before. This is the story Mary was reading to me in the hospital about twelve days ago (has it really been less than three weeks?). She has regained function (no doubt through intensive rehabilitation) of everything except her left arm. They can't figure it out. She says she gets depressed at times about this. At first that struck me as a little odd-- wouldn't you rejoice at how much you had gained back? But how selfish of me, how privileged-- wouldn't I be depressed by that too, having once had control over it? I hope this is teaching me more empathy, more sensitivity, but I told Don the other night, "I try not to walk in Linda's shoes too often."

Today I was trying to figure out why this has hit me so hard: I went through an impossibly horrible divorce, and taught all my classes and finished grad school on time. My child was hit by a car, and it didn't affect my work performance (though, of course I took some time off). I was hospitalized, but it didn't affect my work performance.

For some reason, what has happened to Linda just left me stunned, almost comatose for two weeks. I know, I know, people think that's insane, there is a whole blog, there was a fundraiser, there were visits to Columbia, phone calls. But I view the last few weeks as a fog, like I've been walking in my sleep, operating on automatic pilot.

The best thing I can think of is that when hardships were mine, when I owned them, I could handle them because I *had* to. But when this happened to Linda, I couldn't own it, I couldn't take it away, and I couldn't make it better. And the one person I would like to be talking about this with can't talk back to me right now. I can't ask her how she is dealing with this, and she can't tell me. Linda has to go through this. And while I would not want this, if I were going through it, at least I would know that I could bear it because what choice would I have?

Don ~ Lex and Anita Towns(members of my church) have a daughter that sufferered a massive head injury due to a car wreck. She went through rehab similar to Linda's and they both said they would love to talk with you about the process, etc.. Let me know if you want their phone number.

I continue to be amazed and inspired by Linda's progress. The news is really encouraging and it seems that she will be unstoppable!


Wednesday, February 25, 2004

Don, I am also happy that you continue to update the blog every day, because I can't do it as much as I was doing it before (we talked about this, last night, you and I, but I haven't told the rest of folks).

I still plan to check in and provide updates when I can, but I have to re-focus on my life and my work now, and kind of let the blog morph into the comments that everyone has been providing.

Admit it: You like the comments feature.

Today I was thinking of small blessings we have by living in this age of technology: there are call lights, chords to pull, assistive technology. Blood thinners. MRI's. Feeding tubes. Fifty years ago, we wouldn't have known Linda could understand everything. We live in a civilization which sometimes seems barbaric, and yet, of course Linda's civil rights are being protected, she has visits from husband, family, child, friends. I am hoping she will still be able to vote.

There are many many ways this could have been much much worse.
Wednesday update

If you go away for a day, you know what happens? When you come back, you find that your friend has been improving and you didn't see it. It's like seeing children; you can't believe how they've grown.

Linda can control her left foot enough to operate the "call light". They set up a small plate next to her foot so she can ask for the nurse to come.

She stood in the standng frame this morning, twice, for more than 5 minutes each time. The have also been working on leg extension (kicking out) which she can do a bit on the right and pretty well now on the left.

I was here for her afternoon PT session. She is getting good trunk control and neck control. From a forward leaning position, she can straighten up and lift her head. Her nodding and shaking for yes and no is getting better.

She's sleeping now. I promised to come back in an hour or two after she has rested.

Tuesday, February 24, 2004

Tuesday update

Since I am not actually in Columbia, I can't give a detailed update. I got up a bit early and went over to see Linda. We tried the spelling card, but we didn't manage to spell anything I can understand. I don't really know why we had so much trouble, but I suspect that at least part of it is because Linda is more tired now that rehab has started, and spelling is really pretty hard for her.

According to the doc' this morning, Linda expressed that she had too much visiting yesterday (Monday). Her visitors were me, Linda's father and mother, and Ellie; so a lot fewer than she had at the hospital. I don't want to discourage people from visiting, I just wanted to let you know to try to watch how tired she seems when you do visit. I know it isn't easy, because she has few facilities for expressing things. I know it's something of a pain, but I do actually think that coordinating so there aren't too many visitors at once is a good idea. She only had 2 visitors tonight, and I'm guessing that was better. I'm still learning how all of this goes, but around 6pm seems like a pretty good time to drop in since her therapies happen during the day. A short day visit might be fine too, but many times she'll want to be resting for the next therapy session I think so you'll probably want to just pop in and out.

Now the part you'll really be wanting to know. The nurse said that Fred (the physical therapist and a generally cool guy) told her that Linda could pretty much move her left leg on command and that he was very pleased about that. Since I wasn't around, I couldn't say what the movement was, but yesterday I know he was having her work on bending her knee (tightening the hamstring).

Monday, February 23, 2004

Our custom eye chart

I suppose everyone in our situation makes up a letter chart that plays to their particular strengths. This is the one I created with Linda, and we are pretty successful with this when she isn't too tired. I designed it so you could go down the rows: "Is it in row 1?", etc. until she indicates yes. Then work across. The letters are arranged so that the most common letters require the fewest total choices (i.e. they are to the top and left).

In case you are interested, I uploaded it:chart.pdf
More Monday Musings...

Don just called-- Linda has her own room now, room 232 when you call.

We were talking about how people could discuss when they plan to visit, and you may or may not have noticed that I have installed a feature allowing you to post comments. If you didn't know what the word Comments was there for, that is what it allows you to do, so you can post general comments to the blog and everyone can see them.

If you want to comment on a post, go to the end of the post and click on the word Comment. It will ask you for your name and e-mail address (the URL is optional-- if you have a website or a blog, feel free to put it there, but if you don't, don't worry about it).

Then, you can write your comment.

Scroll down to click the button that lets you post it.

If there are comments to any particular post, you will see Comment (3) or something to that effect, indicating that there are three comments. By clicking on the word Comment, you will also be able to read comments.

This way, if you want to alert people that you plan to visit, you can leave a comment. I will watch the comments, so if your plans get archived, I can keep track and others will know.

This weekend would be a nice time to visit, for those who are thinking about it. There aren't waiting areas like the hospital, so it's probably better for her only to have a couple of visitors at a time.

Further Updates:

Linda is having trouble with blurry vision (she spelled, "Another Myopia" the other day, in true English Major fashion), which makes the Alphabet board a continued challenge. Don has created another one.

Today, Linda spent five hours total in the wheelchair (two in the morning, three in the afternoon) which is really huge, considering that even last Thursday she couldn't tolerate it for more than 20 minutes at a time or so. I hope I have that right-- I know it wasn't long.

She has stronger head control every day, and Don asked the Physical Therapist (PT) whether it would be reasonable to expect Linda to indicate yes and no by shaking her head and nodding in a couple of weeks.

It would be reasonable, yes.

The doctors and therapists are very excited and encouraged by her progress.

Today, Linda tried the standing frame for the first time, which I remember from my days teaching special ed is very important for developing strength, something to do with gravity. She tried today after two hours in the chair, so she tired after two minutes, but she is working really hard. "Linda had heart problems in a family of hikers; she has had to develop will power."

She continues to do well with swallowing-- they swab her mouth with lemon swabs and ask her to swallow. She improves every day.

About 2/3 of the time you ask her, she can vocalize on command-- she can't always choose to initiate it, but if she is already vocalizing (crying), then she can stay on it.

Ellie came to visit today and was still a little sickly. She required a change of clothes, and Linda heard Ellie repeating, "Icky pants," to Grandma in the bathroom, and laughed.

I have meals and childcare arranged for Don and Ellie on Mondays and Tuesdays through at least the end of the semester (Tuesdays) and through June (Mondays). I am going to finalize the rest of the weekdays and post a schedule later this week because Don will be returning to Kirksville next week.

Thank you again for your offers-- I have not forgotten, I just haven't grouped it all yet. I will assume unless I hear from you that an offer once proferred has not been withdrawn. I will not schedule you to host a meal unless I have been specifically directed that this is okay.

I know that Thursdays don't work for some people, so, if you could email me (or comment here) a couple of firm dates on which you can host Don and Ellie, I will do my best to accomodate you.

This is the time when you are needed the most, to stay connected. I will do my best to keep you updated, informed, and connected through this forum. Already I can feel the urgency of this tragedy subsiding into the mundanities of my everyday life-- I remind myself that this is still very fresh and very real for Don, Linda, and Ellie. It may seem silly to have a schedule that keeps us focused on them, but I am a pretty pragmatic person sometimes, and I think, hey, if it works for me in my job, then maybe it will work for us here.
Monday Update

The really very exciting thing that is happening right now is that there are new things to learn about Linda's progress every day!

I just called Rusk (I forgot that Don was not going to be there) and Linda's physical therapist answered the phone. He asked Linda yes and no questions about where Don was (I said, "Ask her if he is at the Brammall's" which translated into "Is he at Grandma's?" So I had to correct to "Ask her if he is at Kathryn's" and Yes, he is. (And by the way, I just want to add how impressed I was with the therapist talking to Linda-- that was very great).

I didn't call Don because he is waiting for a phone call there.

I asked the therapist what new and exciting things Linda was doing today-- he asked Linda permission to tell me and she gave it.

Today when she was sitting up on the side of the bed, he told her: "Pull your leg back."

He felt the tendons on the back of her thigh tighten up-- it wasn't against gravity, but it was there. Actually, what he said was, "The left hamstring fired on command." He had to unpack that for me a little bit. I knew "left" and "hamstring."

After he explained, I said, "Isn't she amazing????"

"Yes, yes she is."

Me: "Will you tell her that and that I'm so proud of her?"

"Do you want to tell her yourself?"

He put the phone up to her and told me to go ahead and I told her I was proud of her and to keep going!

Who says Mondays have to stink?

Sunday, February 22, 2004

Who to blame

At the fundraiser, a person asked me if it would be easier of harder for me if someone had made a mistake (i.e. a medical mistake) with our case. How much would it help to have someone to blame?

As far as I understand, no one made a mistake that changed the outcome of our case. There were some things that I would consider mistakes, but the time frame for doing something about the clot that causes a stroke is 3 hours and nothing else is really significant. Consider, the scenario:

Linda has a history of migraines, often preceded by stroke-like symptoms. So you wait 30min to see if they clear up. You call an ambulance. It takes time to arrive, time to stablize her, time to the hospital, etc. So another 1 hour. You get evaluated by a physician who orders a CAT scan (to check for bleeding), which has to be read. Another hour. Any glitches along the way and you are already out of the window where you could do any good, and even inside the window there is no guarantee that a treatment would be effective.

For me, it is better that there is no scapegoat. I can get mad for days over $9.50 that AT&T tried to defraud me out of on a telephone bill. I'll burn up the time of their customer service department in retribution and refuse to pay them anyway. All because I am angry that they have wronged me.

If I could be livid over something like that, think how I would feel about the person responsible for injuring my wife, my best friend. That would consume me. I can't even imagine it.

I know people ask questions about why God lets bad things happen to people, and something like our situation causes questions of faith in some. I'm not one of those people. We had very bad luck. Some of the decisions we made may have contributed to our bad luck, but we tried to make the best decisions with the information we had. There was no reason to think that Linda, 35 years old and healthy, would have this happen to her. Even if we searched now, there's no reason to think that we would find a cause. People sometimes have freak unusual events, and I think we are those people.

Why it happens, I don't know. I think it's just part of how the universe is made. I'm one of those people who likes to feel like they have free will. Free will to me means the will to do good or evil---if you can't choose to do evil then you aren't free. But if the universe is designed so that people can be free to do evil, it means bad stuff can happen, because people might do evil things to you.

It's not really related, but I used to think nothing dramatic would ever happen to me. There are generations and generations of ordinary people who have never been remembered, and I had pretty much accepted that I was going to have an uneventful life. We almost all do. I don't play the lottery. Of course, I've done the math and I know better. But more than that, I just thought it wasn't meant for me. Too dramatic.

I probably won't play the lottery in the future either, but now only because I still think it's a bad bet.
What to pack

I promised to provide a list of what to pack for your medical tragedy, and I'm finally ready to do it. My list won't obviously be exhaustive, but it's mine and I'm happy with it.

When you decide to have a medical tragedy, you'll be doing a lot of telephone work, so my first items relate to that. You'll want:

1. Your home town phonebook.

2. Your work phonebook.

3. Your personal addressbook. I didn't think of this right away, and I didn't get to it right away either. So on Wednesday, I was calling close personal friends that had not yet heard the news. I just went through it page by page.

4. A cell phone and a charger. You can't always dial out on public phones around the hospital.

5. Pre-paid calling cards. Your cell phone won't always be able to get a good signal or have charged batteries. People were kind enough to give me a few of these and they have been just great.

Some other things I have found useful:

6. Scissors. For opening packages, cutting the elastic off of Linda's clothes, etc.

7. My clothes. Here's a hint. When people ask what clothes you need, tell them to "pack for a vacation." That way you get several changes of clothes, your shaving stuff and a toothbrush, etc. I managed to get everthing I need eventually, but if I had asked right in the first place it would have been smoother.

8. Hospital value card. This might not apply to every hospital, but at Boone you can get a discount card that gets you 20% off at the cafeteria and 10% off at the gift shop. It didn't cost to sign up.

9. A friend in town with a spare bedroom. Just because this is down on my list doesn't mean it hasn't been immensely valuable.

10. Acid free paper and good pens. You'll probably want to write some things down to last. Write on one side of the paper so it doesn't bleed through.

There are a lot of reasons Kirksville residents enjoy complaining about Kirksville, especially those of us who are transplants, who never imagined ourselves living in Missouri, let alone this little place surrounded by flat prairie lands.

The us I refer to, of course, can only be people with whom I converse, most of us who ended up here affiliated with the University, because in academia, we follow the jobs.

I have lived here for ten years. And even though I am happy join in with the complaints, it is a good, safe place to raise my three boys, and I have always known that the people here are fantastic.

I just didn't know before this weekend just how many fantastic people there are.

Here are some of our Kirksville complaints:
It's too small. Basically, you can drive all the way through it in ten minutes, depending on whether you hit the stop lights the right way. We have a small number of good restaurants. We are very happy to have them, but sometimes we crave curry or Thai or the experience of walking through floors and floors of a good bookstore. When we leave Kirksville for vacations, we plan where we will eat: Greek, Ethiopian, SUSHI, and savor the memories of those meals on our returns.

But the very limitations of Kirksville also give way pretty immediately to the strengths. Those of you reading the blog may have noticed that I did not have to offer directions, nor even an address for the DuKum Inn, location of the benefit. Everybody knows where it is. It's right across from the Wooden Nickel, which is a restaurant/bar where you can get Chicken Kreps, named for the Kreps family, of whom Clifton plays for Deadwood, and played at the benefit.

Around the corner is Washington Street Java Co., whose owner, Julia, donated brownies and cookies. Julia is also my neighbor, lives one street away from me. You may have noticed that I often refer to "The Coffeeshop," and running into people there. This is, obviously, because there is not more than one coffeeshop to refer to... (Okay, in all fairness, there is one more now, but I haven't been there, because I go to The Coffeeshop).

Around the other corner is Il Spazio, the new restaurant and brew pub, owned by Brad and Jeff, who also live one street away from me, down the street from Julia. Brad and Jeff live in the house I looked at 5 times and whose picture I had saved on my desktop as "My house." Until I saw this house once and hadn't even tried the dishwasher before I made my bid on it on a Sunday. That Sunday morning, Brad and Jeff came to the house I live in and loved it, but somebody had JUST made a bid...

Are you getting some feel for how interconnected we all are? For how small this town is? For just how devastating it is to us when one of our own is stricken by tragedy?

Last night I went and saw a production of The Laramie Project at the University. I was thinking of how the Matthew Shepard murder divided the city of Laramie, which was just as small and inter-connected as we are-- the parallels were chilling. I happened this morning to be thinking out loud about these things and laughed as I realized I was musing on the telephone to... the director of The Laramie Project. Whose children are over right now playing with my children. Except that we have the same family dynamics, which are not your typical family dynamics, which I won't explain here, but which really cause one to wonder, How do you define a family?

I would challenge anyone present at the benefit Friday night to say that we were not Linda and Don's family.

I absolutely loved to make fun of Hillary Clintons' book It Takes A Village when it first came out because I was feeling rather possessive about raising my children. How many times I've had to eat crow because of that...

So, at 6 p.m., it began. I was supposed to be at the DuKum to set up at 5:30, but of course, I was running late, like you do when your first and primary and ultimate responsibility is the care for the children you gave birth to.

I arrived very close to 6:00 p.m. and we were deciding who would sell the cookies and brownies and how to ask for donations for Il Spazio sushi, how to thank everyone. I found out the Craig had offered to donate 25% of the drink profits from upstairs to the Bindners. Wow. Craig's generosity has no boundaries. He gave us the space for free, which took business from him downstairs, and then donated part of the profits. He didn't have to do that. But somehow we knew ahead of time that he would.

Even before we had completely gotten the food set up, and the first band was warming up, the people started coming up the stairs.

Now, you must understand that Royce and I were almost having a heart attack. Despite a nap, I was so exhausted, I could barely put two words together. We were so nervous that nobody would show up. We had been convinced that if we opened the doors at 6 pm we would be twiddling our thumbs and drinking nervously for an hour before the first stragglers arrived.


I've been wrong before.

By 6:30, the room was full, and I was being summoned to speak for the TV Crew, and the photographer from the paper was there. I kept saying, "I wish the Bindners could see this crowd!" People brought their children, and even though we had decided that asking people who had so generously paid to come in not to smoke upstairs was too much to ask, people went downstairs to smoke on their own volition. People thanked us for starting so early in the evening so they could come. My own babysitter generously agreed to take two extra children for the evening, brought them videos, and taped the news at 10:00. Thank you, Erin. I regretted not bringing my children briefly-- but I was so exhausted and nervous anyway, having Tommy Hatala to chase and keep away from the brownies and the bar and the equipment-- well, sorry son, you were better off at home! Or at least, I was. My children have seen the videotape. Their observation was that it was dark.

It seems like before I knew it, the Bindners were there, Linda and Tom, Don's parents, Dean, his 18 year old brother who was absolutely chagrined by his ID bracelets and the two very large M's marking him unmistakeably as a Minor, Diane, Don's sister, and her toddler daughter Gwyn who danced her little heart out.

Mary came later, and I pointed to her and told my medical student friends, who had shown up at 5:30 to help set up, "That is what Linda looks like." Not really, if you know them well, but she's a very good fascimile :).

The music was fantastic, and the sushi just kept coming. Jeff and I had contests to see who could eat the most wasabe. We ate the same amounts, but somehow I was told I lost-- maybe the choking and crying had something to do with it...

People sat and talked and laughed and drank and listened to great music and Christine and I looked around at the rooms filled with people, with more waves coming through the door (look, those five students, that's $50-- sorry to be so mercenary, but underlying the entire evening, we were constantly aware of why we were doing this) and said, (she probably said it, but we were both thinking it simultaneously, and I don't remember who said it), "We can never ever ever complain about living here again."

I was so grateful that Don's family got to see it for themselves, because I think it was something that you had to witness. All of the people were in that room, had paid money to be in that room, because they cared about Don and Linda. Even people, cadres of medical students, who had never met Don and Linda, had been so moved by their story, that they came. They came and they gave.

And then, around 9:00 (I really don't remember-- by 8:00, I was exhausted and it felt like 10:00, but then a sympathetic friend gave me a great back massage, and I got a second wind), I just happened to look at the stairway, and I saw Don Bindner in a white T-shirt and jeans, slowly climbing the stairs by himself.

I try to over-analyze everything so I can understand it, but I have not yet figured out why that was so incredibly moving to me.

It occurs to me that perhaps it's because Don has in many respects been enduring his part of this alone, as exemplified by him alone, simply dressed, climbing the stairs, the Myth of Sysyphus as Claire put it, but for one evening, relieved of the rock he must roll. And he walked from his aloneness on the stairs and into a room full of music and people and love.

Saturday, February 21, 2004

The Day After The Benefit

Of all days not to be remiss with my blogging this is it-- but there it is! Briefly, today is one of those days that epitomizes the word "salaried"-- work to be done and no help for it.

After the work was done, lunch, then over to Royce's for The Counting. The counting took a long time.

Suffice to say that the benefit was a success beyond our wildest dreams. We called Don in Columbia and he was very touched. He was also excited because when the occupational therapist came (while he was at lunch-- the nerve!--), Linda moved her right, index finger, and he missed it.

Linda moved her right, index finger. Because Linda is a writer, this improvement is truly one I have prayed for. The ability to type, to possibly maneuver an electric wheelchair... Well, who knows what this incredibly strong woman is capable of?

The doctor was overhead to tell a student, "You will really have to come in daily to see what progress this patient is making."

Last night at the Benefit, Mary told me that the next week or two is key: Some of the therapists reported that they usually have an indication within the first month of the range the patient is capable of.

But it seems safe to say that Linda has already surpassed her initial diagnosis of being truly Locked In.

What I have not yet said is that after The Counting, I just came home and crawled into bed, and my brain is still feeling a bit muddy. I will give you a detailed account of the benefit tomorrow (Going to see a play tonight), to share with those who could not be there. It was incredibly moving to see the Bindner family's reaction.

Kudos to Royce and Christine! A thousand thousand thanks to the bands, to Craig Shorten for donating the space and a portion of the drink profits, to Julia at Java Co. for the baked goods, Jeff and Brad at Il Spazio for the sushi-- that kept coming and coming.

And thank you to you, this wonderful, miraculous community that has rallied behind this family and made all of it possible.

Friday, February 20, 2004


Posted by Request: Baby Sitters Available for Friday Night’s Fundraiser. They ask that you donate what you would pay a sitter to support the Bindner family.

Leah Reschly musiflutey04@hotmail.com 665-0740
Taryn Litton d1386@truman.edu 785-5051
Bradley Carpenter bjc407@truman.edu 785-5135
Jennifer Pringle c1408@truman.edu 627-3889
Mary Klein mek735@truman.edu 785-5260
Brady Nelson bradyj19@mrstlouis.com 660-349-9091
Amanda Perschall apanda40@hotmail.com 785-5669
Talia Linneman taliacl@hotmail.com 785-7141
Erin Donahue Sassy_grrl_01@hotmail.com 785-7120
Colleen Peterson colleen311@hotmail.com 665-4158 (she said if Steve Smith signs up, she wants to sit for his kids)
Maggie Klobe mkk836@truman.edu 785-5874
Andrea Bax Animegirl125@lycos.com 665-9782
Elizabeth Plog erp632@truman.edu 785-5884
Elizabeth Poelker ejp610@truman.edu 785-5987

I have also learned about babysitting being offered
Friday, Feb. 20th from 6-9 at Faith Lutheran Church. The flyer says
"snacks will be provided and proceeds will go to the youth going to
Orlando for the National Youth Gathering.
Suggested donations are $6 (1 child) and $10 (2 children)."

For everyone who has so generously donated time and money to this effort, thank you thank you thank you!

Don this is really great news! I am so excited to hear about all that Linda can do. I continue to think and pray for you all several times each day. FIGHT LINDA FIGHT!

Rebecca Murphy
Be ready to be amazed:

So, today is Linda's first day of therapy. We started with occupational therapy, who helped me dress her and do her first transfer to a wheelchair. I think getting to wear a bra again was probably her favorite part, and she'll probably learn to use her arms again just to slap me for telling you that. the wheelchair was pretty exhausting, but at least she was able to get out of her room for a bit.

We had a break and then the speech therapists came. Linda can vocalize voluntarily now. So, to help distinguish yes from no, they had her practice vocalizing with her up eye movements. It's probably no surprise that Linda was a pretty quick study. There were some very fun moments. The asked her to smile and the corners of her mouth turned up. The asked her to open her mouth, which she can do some, and then asked her to try and say ma-ma-ma-ma. She can't quite do it, but you can see her mouth and jaw moving when she tries. We did a little spelling with a letter chart I designed for her and that worked really well too.

The physical therapist came for a short session since Linda was tired from the wheelchair earlier. He's going to come back this afternoon after some rest, but while he was here he did some evaluation. Linda did a beautiful toe curl with her left foot and was able to grab his finger with her toes. She laughed out loud when she did it.

She resting now, and I'm going to get some lunch. After lunch, the PT is coming back and we're going into the wheelchair again. She has a nicer model than this morning to try out, and they really want to help her build the endurance needed to sit.
Linda's Sister Barb told me I could post this to the blog and has asked me to read this tonight at the Fundraiser

To all of Don and Linda’s friends and supporters,

I just want to say “Thank You� for all the support, both emotionally and monetarily, that you are giving Don, Linda, Ellie and the Vogt family. This is a situation that happens to other people, not to one of your own. However, when times like this do happen, it is amazing how God works to pull everyone together and uses their unique talents for good.

Thank God for the website. I visit it many times each day. It is my lifeline to Linda and updated information especially if I can’t get a hold of my mother or Mary. I have found the stories and letters to be very heartfelt and comforting.

I often wonder what God is trying to teach each of us as we journey through this crisis. I know one thing I have learned is that prayer can, and does, make a big difference. God is the master of healing and miracles are happening all the time. Sometimes, we just don’t take time to see them. Some people have stated in their letters that they don’t know what to do – but they do! Continue to pray! Our belief in God will pull Linda through. I rely on this continually.

Enjoy yourselves at the fundraiser tonight. Linda will want you to have fun and laugh.

Once again, Thank You for everything you are doing. God Bless!

Barb Feddersen

The Vogt family: Linda and Don Bindner
Bob and Marilyn Vogt (parents)
Barb and Bob Feddersen (sister)
Tim and Vicki Vogt (brother)
Mary and Phil McIntosh (sister)

Thursday, February 19, 2004

Jen asked me to post the music mixes that I made for Linda, so here they are (they open in new windows because of the blog formatting):

some jingle jangle morning

fox woman

I did my best with Jen's advice that she likes instrumental pieces and female vocalists. :-) They're going out in the mail tomorrow.

It's hard for me to know what to say in this forum; I only met Linda once, and that was several years ago, but I remember that she really set me at ease. I'd taken STAT 190 with Don (thanks, btw; now I only have to take two courses in statistics for sociologists instead of three--also I won $10 from my sister for not dropping that class, which was at 7:30 in the morning). Everything I've learned about Linda recently makes me wish I knew her better. I hope she enjoys the CDs while she's doing the hard work to get better, and the whole family is in my thoughts.
With Permission, From Jerry Bertrand, A Witness at Their Wedding

Hi Jen,

I am a friend of Don and Linda's from Iowa. I am very happy to see
this web site up and running as I can get daily updates on Linda's

I guess Don and I go back a ways as I started him on trumpet in the
fifth grade and saw his musical progress into high school. He
a high honor by being selected to the Iowa All State Band. Of course
Don is more than just a former student. He is a great friend. I was
honored when Don and Linda asked me to witness their wedding
as I am a deacon in the Catholic Church.

Little do we realize the importance of the vows we take when we are
before God at his holy altar. On the wedding day we think of only the
good times and think the "in sickness" part of the vows will follow
after a long and happy life together. Don is a testimony of being
faithful to his vows to Linda as he stands by her " for better, for
worse, in sickness and in health" I'm very proud of him!! It is
very comforting that with all the prayers we say for Linda and Don
there is a strong support group of caring and loving individuals that
surround them. It is through your caring and love that we see the
of God's love in their time of need.

I cannot be at the benefit for Don and Linda but be assured that my
contribution will be in the mail. Thanks for the daily updates

Jerry Bertrand
From Don

Small update: Linda seems to be producing some tears now when she cries. I guess you can look on that as another improvement.

Hey everyone,

We've had a pretty good day today. Linda's physical and occupational therapists at Boone came early so they could work with her before she left on the ambulance. She got to work with her speech therapist as well.

Her feeding has been going well, and her IV was removed about 9:15am. They hadn't reconnected her food yet at Rusk (it was stopped for the trip over), but they were working on getting orders written for that.

Rusk began a bit repetitively. A registered nurse came in and examined her, then a physician examined her (and it was much the same routine). They asked a lot of family history questions which Linda answered and which I corrected if she made a mistake or elaborated on if necessary. Sometimes it was just a matter of reading an eye signal wrong.

The most interesting part was the examination my Dr. Ruperight. You know she can look around, and you know she can raise her eyebrows as well as turn her head slightly. He was very pleased that she had never needed a ventilator. He also discovered that she can move her left foot, and she can press down with her left leg. She also seems to be able to make some voluntary movement in her left forearm, but it was very subtle.

He said she may be able to make movements on the right as well that are just masked by involuntary muscle tightening (tone). He is starting her on a drug to help reduce the tone, and maybe we'll find out soon.

She seems to have good sensation on both sides of her body and can differentiate between different kinds of touches (i.e. touching and tapping).

All in all, he was impressed. She is starting off very well.

Otherwise, today is something of a waiting day. I'm doing some laundry before I go back later. She won't start her therapies until tomorrow. I'll be staying with Linda tonight. I know I won't sleep well, but she asked if I would, and it's hard for me not to do what she asks when I can. One family member may sleep over in her room. I'm actually a bit surprised at that since she shares the room with another woman who also came in today.
Leslie Traylor's Story

Jen and I have been in email contact for a day. She invited me to share my story in this place. I hope that this inspires hope.

About 16 years ago, in my early 20’s, I had a stroke. A terrible headache, with residual effects. Numbness in my palate and tongue, double vision, stumbling, slowness on my right side. I went to a family doctor who prescribed medication for a migraine – took blood tests to look for something. Never found anything conclusive.

A nurse-friend suspected that there was more going on and got me into a neurologist who first did a neuro-check (this can be quite humiliating when you are used to being very athletic and you can no longer walk a straight line). He ascertained that something was going on, did a CAT scan and MRI – (the Reader’s Digest version) – I had an arterio-venous malformation in my brain stem – was told not to do anything too strenuous, and was dismissed (“we'll keep an eye on that�).

Backpacking apparently didn't seem too strenuous to me, and the third weekend in October is always the height of the Fall for leaves and outside weather, so my friend Jean and I went backpacking – Kentucky back country, James Taylor on the car cassette player – her golden retriever Jesse with us – a wonderful weekend.

I returned to teaching Tuesday – noticed that, normally right-handed, I couldn't even hold the chalk anymore and was using my left hand. I stumbled around the classroom, noticed a general worsening of my coordination. I called the doctor from school – went to the emergency room and was admitted to the ICU.

My brain stem had hemorrhaged a second time. As the AVM was leaking, progressively more blood was engorging the brain cells. Doctors feared that a third stroke would prove fatal. The brain stem is responsible for vision, coordination, and seemingly important bodily functions such as breathing. It was time to do something. A week later I had surgery. At the time of the surgery in late October, I thought I would return to teaching after Thanksgiving break. I was in no way prepared for the rehab that followed.

I was in in-patient therapy for about two months, out -patient therapy for another four months. I had to learn to walk - very slow, progressive healing. wheelchair - walker - etc. My sense of balance and body awareness - which way is up, which is down - gravitational pull or something - was gone. My language skills were compromised some, but I could still speak. Had speech therapy to work on that one, as my articulation was not very clear. I found that it was easier for me to talk if I picked up a southern drawl.

I am presently not near normal (I do not know that I ever was) – the differences may be unnoticeable to the rest of the world often, but they are glaring to me. “You can fool some of the people all of the timer, all of the people some of the time, but you can't fool all the people all the time.�

I used to be very athletic - God and I still have discussions about the fact that I'm hardly coordinated now. Eye-hand coordination is shot - my palate is still numb - I have a tremor in my right hand, so I had to learn to be left-handed. I run into walls when I am tired, I am sometimes double-visioned, I stumble more than normal, and I fear that my daughter will have to go through therapy to work out the fact that her mom was always falling in public. Looking on the bright side, I have been told at least I have an excuse.

Brain healing is so unpredictable. The brain can learn new pathways to facilitate functioning. I am not sure that physicians can accurately predict here, and I think the better physicians will admit their limitations in knowing. Frankly, there is so much about the human spirit and healing that medicine cannot quantify nor qualify.

People who have not seen me in a few years will still remark on how much better I am. And it has been 16 years since the incident. Brain traumas heal ploddingly slowly, not overnight.

I have not shared my story often. I think that’s because I do not want to be defined as a human being by the limitations I may have. So I do my best to try to mask them. I suppose we all try to mask our deficiencies from one another. We are not so very different.

Leslie Traylor
Hi everyone. My name is Mel Gibbard, and I'm a student of Linda's. As I mentioned to Jen, I refuse to use past tense, and I hope that doesn't throw anyone off. I was shy about asking to post, but I thought maybe it would be helpful to hear from another voice that knew Linda in a different way than some of you.

I work in the Language and Literature Division Office, so I have the privilege of interacting with a lot of our faculty on a daily basis. It's one of my favorite parts of the job, and it's helpful to know so many faces, as a large chunk of my working time is devoted to scheduling visit appointments.

I can just hear the groan rise up from you faculty reading this. It's true, I'm the voice on the other end of the phone, stalking you, lurking around your every office hour, trying to stick you with a prospective student. There are times when I dislike that responisibility, but it's one that Linda makes so pleasant.

She has actually come down to the office to offer her services in advance, and let me know that she loves meeting with incoming freshmen. I know that for professors who are busy with their own research, writings, and seminars (not to mention classes) these appointments can be a burden. That's why it's so refreshing to work with Linda--she genuinely wants to get to know possible students because she genuinely cares about their college decision, not to mention her loyalty to Truman.

Even with Ellie consuming so much of her energy (in a good way), and all of her massive projects, Linda still manages to care about the details, and I really really admire that. Before I even met her, I was hearing stories from other student workers about how excited and bubbly Linda is. When I did meet her, I guess I expected it to seem forced, or over the top.

Maybe that's the best part about Linda--she's real. She doesn't have to force herself to care about her career, and she doesn't have to force herself to be cordial to people, she's just a ray of sunshine in and of herself. I haven't known her for long, but she means a lot to me, as I know she does to all of you.

Thanks, Jen, for letting me post here. If nothing else, it helps me feel better about things, and it reminds me that miracles come in all shapes and sizes, so all I can do is pray for the best.

Take care,
A beautiful letter to the Bindners-- which may help a lot of us, too.

I received this email a little while ago, and immediately asked for permission to post it to the blog. Mona Davis is the secretary in the Division of Education. She generously gave me permission to post this.

Dear Don -- and Linda -- and Ellie,
I never have trouble sleeping. A joke John and I share is, when we go to
bed, if I'm still awake after a minute, I call out, "I can't sleep!" Then
we laugh and I go to sleep.

Last night I laid awake for hours thinking of
the three of you.

First, I was consumed by guilt because I have not
reached out to you. If the road to hell is indeed paved with good
intentions, my road is well paved.

I have not written because I wanted to
say the "right" thing. (Last night, laying in bed, I was eloquent -- this
morning, words don't come so easily.) I haven't visited because "I don't
know you that well."

Usually, when hard times strike someone we know, we
can offer a hug, or bake a casserole, or write out a check -- and then we
feel better, "we've done our part". It allays a little "guilt" that it's
happening to someone else and not to us. (But secretly -- and we don't
even admit this to ourselves -- we thank God that it's not happening to
us.) We stop to consider it for a little while and then go on living our
lives as if it would never happen to us.

But I can't even put myself in
your place in my mind. It's not happening to me -- it's happening to you
and I don't even have the right to pretend that it's happening to me. My
thoughts and feelings and wishes are for you, Don, Linda, and Ellie, and
not for me if I was in your place. And that's kind of a first for the
hardships I've gone through with others.

It's happening to you and I can
stand by your side or walk with you and cheer you on and even pick you up
but then I wonder what right I have to even be taking up your time. I
wonder what right I have to be happy or to be doing something I enjoy when
you are so wracked with misery.

I feel so very, very sorry that I haven't
known Linda, that I don't have any memories of Linda to give you. When my
Dad died and then two years later when my Sister died, my friends would go
to great lengths "not to talk about it". But I wanted nothing more than to
just talk about them, to just remember them, there was great comfort in
memories and talking.

Here's a memory I have. Don, you were my teacher
for "Computer Literacy" a few years ago. I remember the first assignment,
the scenario of several computer users and the question of which one was
computer literate. Then, at the next class meeting, we found out that the
people in the scenario were really members of your family. And now I
remember that in what seemed like every class meeting, you would make
reference to some family member and often, very often, your wife Linda. It
didn't seem obtrusive. It just seemed like a natural part of the

Since then, during our mostly brief conversations in
Violette Hall, somehow Linda or Ellie were mentioned by you in every
conversation. You didn't "work them in to the conversation", they were
just naturally a part of the conversation. It's so very obvious, Linda and
Ellie, that you are not a part of Don and his life -- you are Don and his

And now I've been staring at the screen for a long, long, time
wondering what it was last night keeping me awake for so long that I wanted
to say to you that I thought might help. The truth is, I don't know what
to say, I don't know what to do. And I have every confidence that there
are countless others out there that don't know what to say or what to do,

But there is nothing we would not do.

I wish I was a take-charge
sort of person, but I'm not. Naturally, you are trying to plan for the

My unsolicited advice to you is don't try to think too far
ahead. Get through today -- get through this hour or just this minute if
you have to. I haven't spent a whole lot of my life worrying, but the
things I have worried about never turn out the way I've worried about them,

I know I'm "supposed" to tell you to fight this, but I'm telling
you instead to surrender a little bit. Do the best you can. When you
can. Nothing more.

So there it is -- the rough-cut, unpolished version of what kept me awake last night, hastily written, not eloquent, probably not even intelligent, but from the heart.

You may not remember my words. But you would have remembered my silence.

Sincerely, Mona Davis
I have permission from a high school friend of Don's to post this email. Just so you know, I NEVER post something that someone else has written without permission.

Hi Jen,
I'm a high school friend of Don. I just put a check in the mail for the
benefit - I know it won't make it there in time, but I hope you can add
it to the collection. Its the least I can do to help Don, Linda, and

I am very happy and comforted that you are there for Don and his
family. The web site is extremely beneficial for updating on us on
Linda's condition and I check it 3 or 4 times a day. Thank you for
updating the web site.

As I was relating Linda's story to some of my friends here at work, one
of my co-workers said he would include Linda in his bible study prayer
group. In times like these, the goodness of people do shine through.
It kind if reminds of the movie with Kevin Spacey and Helen Hunt ( Pass
it on - or something like that) - where the kindness of people is set in
motion by one person. Anyway - there are strangers in NW M! ontana
praying for Linda.

Its good to hear that Don still has his sense of humor. I really
believe humor is what gets us through the toughest situations.

Give Don a hug for me the next time you see him.

Diane Whited

From Jen:

I would also like to say thank you to Dr. Frederick and Mrs. Carol Julyan, Mr. and Mrs. Ted and Joan Swienzynksi, and Ms. Cindy Schwarz for your donations; I have received them and will mark fundraiser tickets accordingly and hope to get tickets back to you in the next week or two.


Now that Linda is going to be at Rusk, the phone number has changed.


You can also, as you may remember from posts way back, email Linda at Rusk: Scroll down to the links at the bottom of this page and select the link for Rusk Rehabilitation.

The email options are listed clearly in the left-hand menu.
Wow. Don's sister, younger brother Dean, and parents will attend the fundraiser tomorrow night.

And, Don is also hoping/planning to attend (but as you know if you have been following this, planning ahead is not really an option these days. You hope, and you try).

Bindner Family, we welcome you.
Thursday Update From February 18

There isn't actually much to report from yesterday, but I like to post from my conversations with Don. He still doesn't seem able to post.

Yesterday morning, they gave Linda morphine for some pain, I think. Don wasn't sure why they gave it, but as a result, Linda slept for most of the day. Don seemed less tired last night as a result of that.

He said he found out from the speech therapist, who works most days at Rusk, that the visitation policy there is quite generous. If you show up while she is having physical therapy, they don't seem to mind if you want to help.

The good news is that despite her sleepiness Tuesday, Linda hasn't lost any of her hard-won skills: looking around the room, moving her head a few degrees to the right. She can also raise her eyebrows. Don asked her whether she could raise one, and she did (I have never been able to do that, but last night, I confess, in my family, there were many attempts! Only Dereck can do it. My kids and I must not have that gene). Don said that was pretty funny when she did it (she could do it before, too).

Don also joked that he thinks it will be years before she can say "yes" without also looking up.

One thing I always forget to post is that Don says that now it's like having Linda through a straw. For some reason that always cracks me up. Is that terrible?

They took the little pumpers off her boots, thinking the heparin will help with the leg clot. For all they know, she's had that leg clot all week, so nobody is worried about it.

She has a lot of tone in her right arm, which actually is not good (but not terrible): It means that she is having abdominal pain from the surgery, so her arm pulls up involuntarily, protectively. Don just wishes that that wouldn't happen, but, oh well. Better to focus on the positive!

Linda woke yesterday afternoon and just wept for an hour. Don said it was almost as if she had forgotten or dreamt differently, and then awoken to the reality. "It's not like you can ask her what she is crying about. Her eyes are busy."

"Does she produce tears?"

"No, she doesn't."

They know she is crying because she vocalizes, and this is actually how Don managed to comfort her: "Linda, you can vocalize when you cry, so you need to try to focus on that and control it."

So, they worked on moaning. He said she moaned for a long time, but he wasn't sure whether it was because she was practicing or not...

Then, he started having her practice looking around with her eyes. Look diagonally up. Now, diagonally down. Look to the left. A little farther to the left. Look up. Look down. Look to the right. Look to the left. And so on. "I'm not a therapist. I'm just a reasonably smart guy, and it seemed to make her stop crying."

He also worked on her yoga breathing. Thank goodness for yoga breathing!

The ambulance is scheduled to take Linda to Rusk this morning at 10:00 a.m. But Don said it's been scheduled so many times, don't hold your breath!

One of the most poignant things he told me last night was that one of the nurses told him that the neurologist cried at work all day Friday about Linda. She has just been devastated by this. Don indicated that she is pretty young, around our age (yes, Truman students, 35 is young!).

Don is on the phone: Rusk is a go. Linda's physical therapists came early today, which was really nice. I can hear Linda in the background. Don was telling me that Linda woke up crying last night, so the nurses gave her something to help her sleep. He said the websites he's read indicate that people who are Locked-In just cry a lot. That seemed to make her cry a little.

He is telling me about the new letter-board he is making for her; more diagonal. He is using mathematical logic.

I just thought of something else funny that happened very early on, which will only be funny to people who know Don well, so this is for you:

When we first got to the hospital that first Sunday, and Don first said, "You know what makes me cry?"

Karen Smith said, "Proprietary software?"

Here's another funny: Last night Linda's mother and sister Barb were talking about how they can't wait to get their old Linda back when she comes out of this. Don said, "Well, she won't be the old Linda, because she'll have had all of these new experiences."

Barb said, "Wouldn't it be funny if when Linda comes out she were the type of person who sends cards?"

Because apparently right now, she is not. And I don't just mean because she can't.

You should understand that we've fallen into this kind of pattern now when we talk of laughing a lot. You just can't have serious and weepy conversations or you'll go insane.

I read Don the last paragraph of my post from the other night, about him driving down to Columbia. I said, "That was like the end of innocence, you can pinpoint the exact time."

He said:

No. The end of innocence came when he had just arrived at the hospital and he was standing in front of the elevators and he heard, "MRI to 4100, STAT!" And he thought, "That is for Linda. They looked at Linda and they think something else is wrong."

Then he got into the elevator, and by the time he got off, it was over.

Wednesday, February 18, 2004

Hurray for Claire!
I'm so glad you posted. I hope others of you will feel free to post as well. Email me and I will give you instructions for how to do it.

My friend Karl works for a healing arts center in St. Louis. Don is interested in healing touch therapy, and I am too tired to post on my own tonight...

Educational Blog
In answer to a potential question from a linked blog
(from Karl)

In massage therapy we call various approaches to healing "modalities". One often trains independently in different modalities and then one does what we call integration - or bringing together what you've just learned with the therapies you're already practicing - or you plateau in a modality at a particular stage and integrate before you go further. A therapist might list their modalities on a business card distinctly, as in "Certified in Cranio-Sacral, Deep-Tissue Work, Swedish Massage" etc., but most often the therapist will use whatever tool from the tool box is called for- Healing Touch is a particular modality of energy work - a technique for working directly on the body's energetic anatomy. I've had many Healing Touch sessions and have also had mini-sessions integrated into an overall massage. The practioner typically activates your primary Chakras, which are spinning wheels of rotating energy that also open and close like flowers - some modalities reference seven primary Chakras - others eleven - but there are many more than that. In Healing Touch the seven primary Chakras are opened, cleared of blocks, and re-energized with new clean energy, and the overall aura is swept for impurities. This helps the overall system to function better and can result in deep healing particularly related to the release of traumatic emotions and experiences that we have been holding onto for years.

If you're in the ville - many of these modalities are available on the square, as part of your massage - if you are open to them. These modalities have much in common with shamanism/mysticism etc. - visions - past life experiences - the whole nine yards. - also Reconnective energy - Pranic healing - Reiki - and other modalities. In Linda's case I would try them all, and if Don & Linda are open to it we can certainly arrange for advanced therapists to work with her. Just let me know.

Of the Energy work Modalities Healing Touch is one of the most widely recognized by more traditional medicine. Particularly in St. Louis there are a large number of Nurses trained at various levels in the practice. We often get Nurses in our classes who are ready to expand their energy sensitivity based on what they've learned in Healing Touch. Within a modality it takes time to integrate techniques with your sensitivity to energy fields - which increases as you work with them. A good primer would be Stephen Ko's book Your Hands Can Heal You. Just now available in paperback - he's been on Oprah and is on the pop culture map - I once saw him on entertainment tonight.

Origins of the Healing Touch taken from their website:

Healing Touch was developed by Janet Mentgen RN, BSN who has been practicing energy based care since 1980 in Denver, CO. The program began as the HT certificate program sponsored through AHNA (American Holistic Nurses' Association) in 1990 and became AHNA certified in 1993. In 1996 Healing Touch International, Inc. became the certifying authority with AHNA endorsement. The Healing Touch certificate program is now taught throughout the United States, Canada, Mexico, Australia, New Zealand, Europe, South Africa and South America.

Healing Touch is a biofield therapy that is an energy-based approach to health and healing. It uses touch to influence the human energy system, specifically the energy field that surrounds the body, and the energy centers that control the energy flow from the energy field to the physical body. These non-invasive techniques that utilize the hands to clear, energize, and balance the human and environmental energy fields thus affecting physical, emotional, mental, and spiritual health and healing. It is based on a heart-centered caring relationship in which the practitioner and client come together energetically to facilitate the client's health and healing. The goal in Healing Touch is to restore harmony and balance in the energy system placing the client in a position to self heal. Healing Touch complements conventional health care and is used in collaboration with other approaches to health and healing.

Unrelated to healing modalities I think met Linda through my friend Glen when I was an undergrad at Northeast Missouri State. Glen was living in St. Louis, still does, but was dating a girl named Kim in Kirksville. When Glen would come up to visit Kim we would all get together and occasionally meet up with Kim's friends, who were all avid Star Trek fans I first met Linda at one of those parties. During one summer Kim, and I believe Linda & her sister, and possibly others came down to St. Louis and we all went to Six Flags together. I next saw Linda years later when she came back to school to do her M.A. We had occasional interactions in the halls etc. I just put all that together tonight. Linda and I rode a roller coaster together years ago (that's an image for you) and went through the same graduate program. My thoughts are with you Linda.
Hi, It´s Claire in currently very wet Honduras. I just want to tell you all how glad I am you are doing this fund raiser. As some of you know, I´m reliving old times with Linda and Don´s experience and I remember that the Dukum fundraiser for Jim helped us out enormously. We were battling the insurance company for money to pay for rehab., but when that finally came through (All Hail our lawyer, Howard Hickman) I used the money to take care of Jim at home for nearly 3 years. Insurance companies never pay much for in home care, and the co-pays for everything else are another gut punch. They´re gonna need the money.
Although we finally got help through RAIL, (Rural Advocates for Independant Living,) the wages it was able to pay weren´t nearly what our caretakers deserved, and the donations provided them a little more bread and dignity. People at Truman and Kirksville town were incredibly generous to us and I´ll never forget the woman I barely knew who handed me a $100 bill in the Walmart parking lot, or Norby at Tutor´s Deli who fed my kids free for 2 years, or my Truman friends who took over my classes. Those samples of Kirksville kindness changed me forever, and even when things were most difficult I felt I was cradled in love and as Camus says in the Myth of Sisyphus(which is, by the way, the closest description to Linda and Don´s situation,) I was able to conclude that all was well. I miss you all. Claire
Wednesday Morning Update

I called the ICU to see how Linda is doing this morning. Don said she appeared better, was moving her eyes around again. The physical and occupational therapists were with her. The hospital had decided to keep her one more day for observation before moving her.

While I was on the phone with him, the therapists came and told him that Linda has a blood clot in her leg this morning, so they were giving her a heparin (blood thinner) shot. We don't know what this will mean in terms of moving her. The social worker who makes arrangements is out of town, so Don has to speak to her replacement today.

Don was very disappointed about the clot because Linda seems to really enjoy her therapy and therapists. "Just when you think it's okay, it gets harder."

It's so difficult: they had to stop heparin shots because she was bleeding into her catheter (sorry if you are squeamish), which I had noticed over the weekend. The heparin also would have made surgery risky (she could have "bled out."). However, she will be subject to more and more blood clots now because her mobility is so limited.

I asked him what the therapists do with Linda, especially the speech therapist. Right now, it's a lot of ensuring continued body and muscle movements: the speech therapy works with her tongue and pushed on her lips. The physical therapists concentrate on reminding her body of different movements: Sitting on the side of the bed, then leaning on her hands to strengthen them.

She also wears these little booties that squeeze her feet to prevent clots from forming, alternating with these little boots that keep her from pointing her feet (reflexes).

It is difficult to achieve the proper balance.

Don said he also suspects Linda is really sick of him. Think of how much concentrated time you actually spend with your significant other: Most of us go about our daily lives, do our individual things, and then re-connect, talk about what we've been doing, and we spend out time looped in this cycle. I have heard several people report that during retirement they go crazy from constantly having their spouse around. New cycles have to be made, but it's difficult. Perhaps the only people we should spend such concentrated amounts of time with are newborns.

However, even if Linda is sick of him, I suspect she'd be pretty angry if he weren't around...

Tuesday, February 17, 2004

Linda Update and Hello From Don

This is Jen; the computer Don's been using is acting up, so he asked me to post. I may be getting that nasty flu, Yolanda, but I think I can type for a bit.

Don called tonight, and I was putting kids to bed, so I didn't answer right away, and he was nervous that I was ducking his calls, poor guy. He was feeling disheartened.

Tonight, Linda is back in ICU. After her anasthesia, they gave her pain medications (she said she was having pain), which slowed her breathing dramatically-- to the point where she was taking a breath every ten to twenty seconds. The docs and nurses did not like this at all, and moved her to ICU, so Don had to clean out her room.

When he left tonight, she was much like she was early last week, only looking up and down and largely unresponsive. He felt very morose, but I gave him my, 'It's the drugs," pep talk, and told him to give her a day or two-- she'll come around because now she knows what she was doing before the surgery and she will want to do it again.

He says the memory of what it was like to talk to her before this happened is fading. Those memories are being replaced by these.

Don said he and the speech therapist had the same thought today: I'd hate to lose on a technicality. I guess they almost forgot to ask her about removing the DNR...

Some of the Things You Need In the Hospital If You Decide to Have a Medical Emergency:

Industrial scissors. Sometimes you just feel like cutting things, like the elastic on socks so they aren't too binding.

Cell phones and phone cards are essential until you get to know the nurses well enough to be allowed to use their phones.

He said the fruit baskets people sent were marvelous. He really really appreciated the food people sent.

A durable power of attorney order.

Someone (friend, mother, sister, etc.) who is in the medical profession who can interpret what the doctors tell you and tell you what questions to ask.

Underwear and socks.

You also need to get to know Dorine, the pallative nurse in ICU. What is pallative? End of Life Care. Dorine's patients can visit at any time, so you don't have to wait outside the ICU until 9:00 a.m. Dorine also has volunteers who do:

healing touch (Karl, maybe you should call Dorine?)

Don tells other families in the ICU that they should get to know Dorine, whether they need pallative care or not.

I have no idea whether that is how you spell pallative or not, by the way. I'm spelling it phonetically, a little trick I learned at Kirksville Junior High last year.

The plan remains to move Linda to Rusk tomorrow at 10:00 a.m. But obviously, we will wait and see.

Don is keeping a journal I made for him (remember: Mary is an archivist. We had to have acid-free paper and the right pens and paper protectors so this will last for Ellie someday). He said right now he is to the point where he was driving down to Columbia that first Saturday. You might as well start at the beginning. He was very sleepy, so he turned on Italian opera to keep himself awake.

Can't you see him? Not too upset, not in a hurry. He was driving Linda's clothes to her. He was driving down to get her, expecting they would be driving together back home, because they thought she had a migraine. He was driving sleepily down to get her, Madame Butterfly carrying him all the way down the highway, in the February sun.
Heartening Conversation with Don

I just had a really encouraging conversation with Don and he said I can share some positive developments.

~ Linda had surgery this morning to insert a permanent feeding tube. The surgery went really well and she is sleeping in her room.

~ The Do Not Resuscitate Order has been TAKEN OFF her chart, not just for the surgery. It's OFF.

~ In addition to being able to move her head a little to the right, she can now look right, left, up, down, around the room. She can look whereever she wants with her eyes. Don says this makes it difficult to understand yes and no answers now because sometimes she just wants to look around.

~ She can clear her throat voluntarily.

~She can cough, as in cough for real.

~During hospital physical therapy the other day, the therapists (PT's) helped her to sit by the side of the bed for 8 minutes. Her head kind of flopped around (Don's words) so they had to help her hold it up.

~ Today, the PT's helped her sit by the side of the bed (feet off the bed, sitting on the side of the bed), and she was able to hold her own head up!!!! She still needs some assistance with it sometimes, but this is very encouraging.

Linda laughed today during physical therapy. They were talking about a baby's reflex of grasping things tightly and Don said after Ellie was born, he suddenly understood why apes have hair all over their bodies, because Ellie likes to grasp his chest hair and pull. He said the PT's reported that Linda was shaking with laughter at this.

~For those of you who, like me, were wondering about the feeding tube, I found out the following this morning (working with doctors has its advantages! I have been questioning them mercilessly, each doctor gets his or her own question):

You need a feeding tube even though the IV could keep you alive indefinitely because you need to use your gut or it will atrophy. You always want to be using your gut for feeding because that is why you have it, and it's the most efficient delivery system for nutrition.

Don does not think Linda needed intubation during the surgery, but removing the DNR would have made it possible had it become necessary.

Don seemed heartened today, as am I.

He asked: If anyone is coming down to visit tomorrow morning, he needs something, so if you could call him: 573-815-4108.

He will post tonight-- his Tips For What to Bring to the Hospital If You Decide to Have a Medical Emergency. It's not what you'd expect!
Hi, it's Jen. No new updates. As you can tell, I've restructured the blog in an attempt to make it easier to navigate-- archived daily, with more headings so you can skip through things to get what you want.

If this has actually made reading the blog WORSE or if the template is really bothering you, feel free to give me feedback. I have a private blog-- this one is for YOU.
3-Legged Linda from Randy Dean

Monday, February 16, 2004

Update From Don

Linda started making her first voluntary movements of muscles other than her eyes. She can turn her head a few degrees to the right. Once she realized she could do that, I noticed that she kept trying it throughout the day.

She still seems very concerned about getting the feeding tube, and she woudn't let me sign the paperwork tonight. I don't know why exactly. So we are saving it for morning. Perhaps it is because she'll need general anasthesia. They are being careful about the anasthesiologist because it is common for stoke patients to stop breathing when under. If you'd like a hard question to ponder, I'll give you one. If you have a "do not resuscitate" order on your chart, and you think you might stop breathing temporarily during an otherwise pretty routine procedure, do you temporarily suspend the order? If you know the answer, then I suspect you haven't thought about it enough.

We used the spelling board tonight, and she spelled "Which room is mine here?" I hate this exercise, because I never understand what the hell she means. I think she just wanted to be oriented some, and to talk of inconsequential things. So I described the 4th floor, told her how you get to the hospital from Kirksville, explained where downtown is, etc. That seemed to be what she wanted.

I want my old Linda back.

We began selling tickets today. Tickets are on sale at the following locations:

Washington Street Java Co.
The Truman Bookstore
Il Spazio (I'm headed over there with tickets in a minute)
Tables at the SUB Tuesday and Friday

Further Updates

In a great gesture of generosity, the owners of Washington Street Java Co. and Il Spazio will be providing the appetizers at the fundraiser (brownies, sushi, etc.). In cooperation with their wishes to assist us with the fundraising, we are asking for small donations per plate of appetizers, which will also support the Bindners.

Not only are these marvelous people donating these appetizers, but have also bought tickets for the fundraiser.

If I were not living this life, I would not believe it. Honestly, would you?
BabySitting Update for Friday's Fundraiser

Okay, it's all confirmed!
~We have the Parish Center and the school cafeteria reserved this Friday from 5:30-9:30 pm.
~Please have parents bring their children to the Parish Center (small building to the left of Mary Immaculate Church/School) anytime after 5:30.
~We will not have dinner there, or snacks, so any food should be left with the kids when they drop them off.
~We have games, books, videos, and toys, so we will have a great time!
~We ask that any money they would usually spend for 3-4 hours of baby-sitting also be donated for the benefit.
~I have 6 students who have volunteered so far, and I'll try to get a few more before the end of the week.
~Please let me know if there's anything else I can do, or if you have any questions for me. Oh, and you are more than welcome to include my name, email, and phone number as a contact for parents. Thanks!

Leah Reschly

Reflections from Jen (No New News)

Last night I was kept up by dental pain. Unpleasant though it was, it also gave me some time for reflection.

This has all been so hard to process. I feel like in the space of one week I lost my friend, recovered her, lost her again, and then recovered her again.

It is very difficult to bounce back from that kind of emotional rollercoaster. It has made me confused, angry, cautious, and mostly confused.

Although I am the type of person who is frequently subject to depression, I am not often despondent, and I am not now.

After I posted yesterday, I had much pause.

I can hear something in the distance, something pressing against the air. I think of my own life: firstborn son having Group Strep B, requiring a ventilator and Neonatal Intensive Care. Fast forward nine years to that son being hit for a car and left by the side of the road, only to walk out of the hospital one day later.

Second son, still not talking at age four. The experts shaking their heads piteously at the poor mother in denial who insisted that there is nothing wrong with his intelligence. They whisper words like fragile X. Now, at age 7, he thrives in first grade, reads Garfield incessantly, and we can’t shut him up.

Third son, age five weeks, spent five days in the hospital with RSV. He went from being unconsious from dehydration to being kicked out of pre-school for refusing to nap, and is one of the most beautiful, affectionate, obnoxious little boys on the planet.

Then, there was Sarah, beautiful Sarah. We were all so scared for Sarah, and yet I could feel the love, thick in the air, heavy with prayer. Why was it so much easier to hope for Sarah, who also walked away from very possible death?

Then, three months later, to find myself in the hospital, told first definitively that I had blood clots in my lungs, only to walk out of Boone Hospital, the same hospital where Linda lies now, with a prescription for anti-biotics and a diagnosis of pneumonia. The doctors are still unsure of what really happened to me.

And then there are the messages of hope coming in from everywhere; the most moving and surprising to me came from the blog of someone I often think of as perhaps more cynical and realistic than I:

Linda, I admire your courage and hope that it grows with each passing day – secret St. Louis mystics are sending Reiki guides and energy to help you in this infinite time of need - language is at times an albatross when it comes to energy. While there is life there is hope. Were I in your shoes I would do everything in my power to live as I was able. Romantic visions of a quiet passing are fucked - fight woman.

Fight, woman.

I get so caught up in wondering how a miracle could take place: did I forget one of the most miraculous events I have ever heard of in my life? In the twenties, Niels Bohr performed experiments with electrons: He fired electrons through two small slats in a wall; depending on which opening, upper or lower, that the electrons passed through, they hit the upper or lower part of the final wall that stopped them. So: can you picture a machine that fires electrons, fired through two slats in one wall, to travel through a space, and then stop at a second wall?

Next, he closed the bottom slat; the electrons went through the upper slat and hit the upper portion of the wall.

Next, close the upper slat, and see the electrons pass through the bottom slat, to hit the lower portion of the wall.

Then, just for fun, he fired the electrons through both slats, and after they had passed through the slats, he closed the upper slat. There is no way for the electrons to have known this. Yet, they hit the lower portion of the wall. He tried it again, by closing the lower slat AFTER the electrons had passed. Again. Again. Again.

He determined that observation determines reality.

Here is my observation for you, Linda Bindner: you have endured surgeries to repair your heart. You beat the odds to have a healthy baby girl. Hell, you even beat the odds by having this stroke. Who is to say that you cannot do it again? Again. Again.

You are loved across the nation. Across the nation, people are sending electrons to you, sending love and prayers that are whispered on the wind and carried to you, messages of love to buoy you up.

Just like the beating of a thousand tiny wings, we are sending you our love and our hope, like a thousand tiny birds, we will grasp your garments in our tiny beaks and pull you up, and we will hold you and sustain you. Our electrons will fuse with yours and you will feel and speak and move.

Fight, woman, fight.
Sunday Night Update From Don

OK, today's a big day and I know a lot of you want to know what's going to happen. Over the weekend, Linda indicated that she would like a permanent feeding tube, and said she is OK to go to Rusk. She was nervous about it (the tube), so we had a nurse come talk about the details some, but I don't know if it set her at ease or not--I think so. I'll ask her again this morning to confirm her wishes and make the arrangements.

Last night seems to mark the moment when this finally came crashing down around her. She wept for over an hour.

Sunday, February 15, 2004


Hello Again,

Many thanks to all of you who have so generously offered to help the Bindners. It means so much to them.

As I mentioned on the blog earlier (and please refer to the blog for a weekend update: http://lindabindner.blogspot.com-- it's much easier for me to make general announcements there. I met two women in the hospital elevator who had read the blog-- from Georgia.), Linda is NOT coming home, but will be transferred instead to Rusk Rehabilitation Center instead.

The purpose of this email is to ask you to revise your generous offers: Don will be returning to Kirksville and the looming prospect of single fatherhood this week. It would be lovely to eliminate meal preparation from his tasks for the next few weeks.

Additionally, Don and Ellie will need social interaction, so I would like to schedule both meals to be deliverd to their home, and one meal per week HOSTED IN SOMEONE'S HOME for as many months (yes months) as we can to ensure Don's continued support. I mentioned the idea to him, and he was very receptive. We thought Thursday nights regularly, though I am sure he would be very open to other nights as well :).

I have my first volunteers for this Thursday already, and I know Lynn Carter has a meal in her freezer :) already.


I think the easiest way for me to do this would be for you to email what you would like to do: deliver a meal, invite them for a meal, (gift certificates would be great too-- remember that two year olds love McDonalds!), provide a gift certificate, or anything else you can think of. With your permission, I will create a schedule and post it on the blog. If you could indicate dates/days that you are NOT available, or an alternative to Thursday night, that would be great.

Our fundraiser is shaping up nicely! Royce gave me 50 numbered tickets this evening.

Tickets are also on sale through: Royce Kallerud (785-6009), Christine Harker (785-6018), and Becky Becker (bbecker@truman.edu), and Jen Creer (626-2399), and Dereck Daschke (785-6005) Obviously, since I am not on campus, it might be wise to try the other folks first. We are also trying to arrange for a table at the SUB this week.

The text of the tickets follows:

Benefit for Linda Bindner

Friday, February 20, 6:00 p.m. @ the DuKum Inn Upstairs
Music by Redwing, Beyond the Gael, and Special Guests
Appetizers at 6:00/Music at 7:00

$20.00 donation suggested/$10.00 for students
All proceeds will support the Bindner family

Please make checks payable to "Don Bindner"

If anyone knows of a way to make digital recordings or has that capacity, it would be great if we could make a recording that I can then burn onto a CD so Linda can hear well-wishes and the benefit-- this way she is not restricted by having someone read to her. Can you let me know if you know how to do this? And could arrange it? :)

Th th th th that's all, folks! Thanks again for your amazing support.


P.S. Don will be in Columbia most weekends and will not need meals then. However, he will need child care from time to time for Ellie, as these trips are a strain for a toddler.

Also, and this is particularly for my college student readers, ideally, if Don could count on babysitters two nights per week to help with Ellie, that would really ease Linda's mind. If those of you who are organizing babysitting help for this Friday night could also ask around about regular childcare for Ellie, that would be much appreciated.

Don gave me links to some pictures of Linda, so we finally have some. I know that not everyone who is concerned about Linda actually knows what she looks like.

After many different attempts to do this, the best was to do it as links, as you will see to the right of this page.

As Dr. Woehlk noted in an email earlier today, Linda has decided to go to Rusk Rehabilitation Center in Columbia.

rusk rehabilitation center

315 Business Loop 70 West
Columbia, MO 65203
(573) 817-2703
1 888 215-6437

"Rusk Rehabilitation Center has achieved a reputation throughout Missouri as a leading facility for rehabilitation and physical medicine. As mid-Missouri's only center dedicated solely to rehabilitation care, Rusk offers a range of comprehensive services, including inpatient and outpatient programs and specialized treatment for brain injury, stroke, arthritis, spinal cord injury, chronic pain and industrial injury. Rusk also offers a specialized pediatric rehabilitation program in conjunction with Children's Hospital. Because injury or illness can affect every aspect of a person's life, Rusk faculty and staff work as a team to treat the whole person.

As a result of an agreement between the University of Missouri Health Sciences Center, the Department of Physical Medicine and Rehabilitation and HealthSouth Rehabilitation, Inc., a new, state-of-the-art rehabilitation hospital has been built on 7.3 acres of land next to Ellis Fischel Cancer Center on Business Loop 70 in Columbia. The new hospital increased inpatient care space at Rusk from 40 beds to 60 beds and accommodates an outpatient clinic, a therapeutic pool and a gait analysis lab for analyzing patients' walking patterns.

HealthSouth jointly owns, manages and operates the new facility, while physical medicine and rehabilitation physicians and psychologists direct medical care and oversee medical education programs at the center."

In order for Linda to be able to go to Rusk, she had to be able to track her eyes, and to be able to communicate yes and no.

Linda probably will not be moved to Rusk until Tuesday. I base this on the fact that she does not yet have a feeding tube inserted; they will do this tomorrow at the hospital, and probably monitor her over night.

Linda had a great many visitors yesterday, which she seemed to appreciate, but it also was greatly tiring, as you can imagine. In addition to Kirksville people, her brother, sister-in-law, don's brother, his wife, Don's mother, Linda's mother, Mary, her husband Phil, Ellie were all there; then two women showed up from Athens, Georgia! Today, she had cousins from Michigan, Truman friends from Kansas City-- it's really incredible the lengths people are going to visit.

However, it is also really exhausting.

To the extent that our little community can, I would suggest that due to the fact that we are not going to be using our care schedule to bring Linda home, that instead we create a visitation schedule to make sure that Linda has regular visitors, but not twenty one day and none the next. We will also have to wait and see about what her days at Rusk are like. They will be working with her extensively for the next six to nine months.

And what exactly is the rehabilitation like?

They will work with her to get her to move her eyes from side to side. Don was explaining this to Linda, so I played the sitcom role of asking the stupid questions to make sure he was explaining it as fully as he could:

"How can they get her to move her eyes from side to side when she can't do it?"

"They get her to try to do it and see if that eventually enables her to do it."

"Like laying down neural pathways?"

"Something like that."

Don's main concern is what Linda's life will be like when she is not in therapy. She is a very intelligent person. What measures will be taken to insure that she is not bored? Will she be able to somehow turn on a television at night if she is bored?

I realized after talking to some visitors that people still have questions about what exactly has happened. I have had to ask some questions over and over and I hope that I am explaining this correctly:

A stroke occurs when a blood clot travels to the brain and cuts off the blood supply to that portion of the brain, causing tissue death. In Linda's case, the blood clot traveled to the brain stem, which is tiny, about the size of a fifty-cent piece, according to how Don held up his fingers. Linda's stroke occured on both sides of the brainstem-- basically damaging all of it. The tissue has died. In some instances of stroke in the upper lobes, one part of the brain can eventually take over and compensate for lost functions. However, there is not enough brain tissue around the stem for this to happen. That is why this is the very worst place for a stroke to happen, and the fact that it was on both sides-- well, it is the very worst type of stroke. Linda was placed on blood thinners a couple of HOURS after the stroke began, which means that the clots were cutting off her blood supply without abatement for hours. It took a long time for swelling to go down and the clots to dissolve in order to determine what kind of damage had been done. However, the nature of the stroke and size of the clot led the doctors to their diagnosis early on.

The brain stem controls movement, coordination, breathing. Linda is extremely fortunate that she can breathe on her own.

However, the damage to the brain stem is what can lead the doctors to make predictions about her prognosis. It *is* too early to tell exactly how much of the brain stem has been damaged, but that is not the same thing as saying we can expect significant recovery. Don told Linda that *significant* recovery would be that someday she could manage an electric wheelchair. We do not have any idea at this point, though, how much recovery is possible. By saying that we do not know how much of the brain stem was damaged, I mean that there may be little tiny undamaged portions that would enable her to raise an eyebrow, move a finger, etc. I do not mean to imply or suggest that the brain stem has not been significantly and profoundly damaged. Brain tissue does not grow back. Once it is dead, it is dead.

At Rusk, they will work with her to see whether she might someday be able to swallow, whisper, and perhaps gain enough hand movement to either feed herself or manage to type on a modified keyboard with a modified program that would make it easier for her to key. However, the work she will be expected to do to accomplish these aims will be grueling and exhausting. And if she does not progress at Rusk, they will release her.

I think it is far too early to speculate about where she will go after that release. Of course, that does not stop me, but it would be irresponsible to do that here, perhaps.

In addition to some eye movement right and left (which is subtle-- I didn't notice it this morning, Don told me), she is also coughing much more like she used to-- it sounds more like a cough.

I have also noticed some vocalizing-- and it seems to be deliberate. She cannot cry, but she can make a very anguished sound when she is sad. And I'm sorry to say that I heard that when I was speaking with her this morning, because I asked her if there was anything she wanted to talk about, anything she was worried about, and when we spoke of Ellie, I believe she cried. I felt bad for upsetting her, but the simple fact is that she cannot communicate unless we ask her questions. Sure, we can just sit there and not talk about anything, but she wants to talk-- and right now, not a lot about this is not upsetting.

Another thing I wanted to address is that I have heard from various people that they thought discussions about the feeding tube were premature last week. However, the doctors need permission from Linda, because of risks of infection, aspiration, and the fact that she does not have one, in order to give her a feeding tube. Last weekend, the situation was so grave, that it truly was not premature to have that conversation. It would have occurred sometime this week, and it would have been cruel to keep her in the dark about her condition and delay it.

I do wish other people would post, because I don't want to be all doom and gloom all the time-- I am basing these posts on conversations with the family and what they are thinking about. However, I have received reports from people about their hopes and prayers for miracles. I think someone else should take a turn to post more positively, or you will continue to get news from Jen's lens, which is grateful Linda is alive, but trying to be cautious in my expectations. I would rather be pleasantly surprised.

Linda is not a religious person. She is not holding out for miracles from God-- which of course does not mean that a miracle will not happen anyway. I am not the best person to speculate about such things.

I do know, however, that most of my conversations have been with the Bindners. I also know that Linda's family has a different mindset, and that they very much believe in the possibility of full recovery. Mary was reading to me yesterday about a woman who had a stroke worse than Linda's, was in ICU for six weeks, couldn't move from the forehead down, and within six months was showering.

I did not ask how much of the brain had been damaged, how soon blood thinners had been administered, etc. etc. etc. I let her tell me, and I told her I thought it was great. And surely it is.

A few years ago, my dad gave me a book to read called The Diving Bell and the Butterfly by Jean-Claud Bauby, who wrote the book through a system of blinking when he was locked in. It's a quick read and may provide some insights. Somebody who works at the hospital gave a copy to Don. He said he'll probably read it. I can't say it paints the most positive picture though, although it is promising for Linda as a writer that he was able to do it.

I spent most of the afternoon yesterday playing with Ellie, who wore me out! My children are older and don't demand quite so much of my attention. It began when we were making some posters for Linda to look at, and Ellie went from tracing her hand to coloring on her hand, to coloring on my hand... So, I took her to the gift shop, hoping she'd want some nice stuffed dog or something. No. She went straight for the bouncy balls. Fortunately, the ones (I had to insist that one was enough) she chose were big enough not to get lost, but still very bouncy.

We played with that ball for the next two hours, sitting on the floor, rolling it back and forth, then she'd kind of throw it. Then she looked at birds out the window. Then we did ring around the rosy. Then, we went upstairs, and she had some apple juice and we rolled the ball in the family room for awhile. Then, she found phones on the wall, two side by side, so she picked one up to "Call Mommy," and instructed me to do the same. After we had called Mommy three or four times, "Hi, Mommy? Are you still sick? Are you tired? I love you, Mommy, bye bye" a very cross woman informed me that the phone Ellie was using called the ICU nurse to have her let people in, simply by picking up the phone... And then she proceeded to explain it even more.

For anyone who thinks I'm a particularly nice person, let me just correct you now. I cut her off with, "I'VE GOT IT."

She started to chide me more, "They're really busy, they don't like that, blah blah blah."

I fixed my coldest stare on her. "You could have told me that before she picked up the phone four times."

"There's a sign on the wall. You can read."

The sign on the wall indicates nothing of the kind, and I do not live in the hospital. B*7^$.

I thought about launching into an icy, dramatic lecture about the fact that this little girl had a mother who, well, you all know, so she'd feel really bad, but I did not-- she was obviously suffering for someone there too, and Ellie certainly didn't need to hear anything. But I still think that woman was an obnoxious *&%^$.

Then, out to the hall to roll the ball down the hall and run after it over and over and over. I kept trotting behind saying, "Shhh," and she would dart back, "No, quiet, Jen!"

Finally, Uncle Dennis and Aunt Jo (sorry if I spelled that wrong) rescued me with a game of hide and seek so I could collapse into a chair by Don's mother.

Right now, Ellie is fine. Of course she has a difficult road ahead, but right now she is getting a lot of attention from a lot of different people. Same with Don. But they do have a long road ahead:

In addition to schedules of visits for Linda, I know many people have offered to provide meals and are worried for Don and Ellie.

I would like also to schedule meals for Don and Ellie for the next month or so, and also get volunteers to host Don and Ellie for dinner one or two nights a week-- let's say Thursdays-- so that they get social interaction and good cheer. I mentioned this to Don and he liked the idea very much. I know that we all want to provide continued support; I come from a background that suggests that this support will be the most possible and the most enduring if we go ahead and put it on our calendars.

I don't when exactly Don is returning to Kirksville, but I'm guessing they will need an invitation for Thursday. Don is speculating also that he will be able to come to the fundraiser on Friday night.

There is a group of Truman students organizing a babysitting effort so those of us with kids can attend the benefit. Last I heard, Leah Reschly was organizing something at the Newman Center, as well. More details as I get them.

I will send around an email for scheduling purposes later-- I really prefer to post updates on the blog though, as it takes forever to create a database of group emails through my work email, and so I have to keep finding old emails I have sent and cutting and pasting addresses, which is inefficient, because I always miss someone. The blog is the most reliable source for information, and Don now knows how to blog, so look for more information from him.