Final word about MS

I mentioned earlier that I wasn't going to turn this into a blog about multiple sclerosis.  It just sort of seems to keep coming up.  I have two final comments about it, and then I'll be done for now.

First, some of you may have heard that Annette Funicello died yesterday.  (Some of you younger readers are asking yourselves, "Who's that, and what's with the funny name?"  I'll leave it up to you to Google her.)  She had MS for many years and had been somewhat of an activist in promoting research and awareness.

A couple of reports said that she died of "complications from multiple sclerosis."  I find that somewhat puzzling because MS isn't generally fatal.  If you told me that a 70-year-old with MS had died, I'd be fairly certain that the cause of death was something other than MS.  I wonder if she broke her hip due to a fall or something like that.  A fracture like that can cause all kinds of complications in elderly people or people with limited mobility.  Anyway, I just wanted to clear up that it's probably not as simple as saying that she died of MS.

Second, I briefly mentioned the other day that Lindsey is pretty excited that I have MS.  I was at a conference a few months ago and picked up a children's book that explains what it means for Mommy or Daddy to have MS.  Most cases of MS are more extreme than mine, and much of the book didn't apply to my situation, but I brought it home for Lindsey anyway.  It helped her to understand a little better why I stumble once in a while.

She's now taken it upon herself to help me walk even when I don't need the help.  She likes feeling useful.  That's why she says she's so happy that I have MS.  I guess it's one positive thing to come out of having MS.  Actually, there are plenty:  I'm finally free of the relentless pressure to run a marathon, no one expects me to be of much use around the house (Stace was overly concerned about me climbing on a stool to change a light bulb last night), and I finally have a convenient excuse for why I'm such a lousy basketball player.

Awwwwww, cute . . . .

After being up a couple of times during the night, Lindsey threw up again this morning, so I'm home today taking care of her.  Other than the throwing up part, she hasn't really seemed that sick.  She rested on the couch for a while but seemed to perk up, so I told her to go upstairs, get dressed, and straighten up her room a bit.  She did that, but after a while, I noticed that it was very quiet up there.

When Lindsey's quiet and alone, that usually means she's pouring bleach on the carpet or mixing an accelerant to burn the house down faster or something like that.  I went to explore.  It turns out that she fell asleep in the middle of her bedroom floor.  She's been there for more than two hours now.  I guess she really is sick.  I covered her with a blanket and left her there.  It's probably the best thing for her.

Update:  she slept up there for three hours.  Even Lindsey couldn't fake that.  I actually believe her this time.  She seems to feel much better now, so I assume we'll be back at school tomorrow.

So, there'll be some days . . . .

Kind of a rough day yesterday, but everyone's fine.  I couldn't get Lindsey to empty the dishwasher, which is her daily assignment.  She just dug in and wouldn't do it.  She got irritable, I got irritable, and things weren't good.  I finally called a halt to the power struggle and asked her what was going on.  Not surprisingly, she was upset about things.  That led to some more hugs and crying about life, but we got through it okay.

At work this afternoon, I got the call from Tanner:  Lindsey had just gotten home from school and was throwing up.  So I left work a bit early.  Everything was fine.  She just seems to throw up once in a while.  I'm not sure why.  She was eating dinner an hour later and shows no signs of anything having been wrong.

She was doing so well that I decided she was up for doing some homework.  Always looking to take advantage of the situation, she immediately decided to have another "divorce crisis" moment just like the day before, but this one was 100% manufactured.  Oh, the drama and the fake crying.  When she finally figured out that I was on to her, the crying and tears ceased in a heartbeat, and she sat down to do her homework.

I've decided that there are three things that will always exist in this world:  hostas (have you ever tried to kill a hosta?), cockroaches, and Lindsey's desire to manipulate every situation to her advantage.  It's good to know there are some things that you can always count on.

Oh, and to add onto this post, I forgot to mention that this morning was the first day of Lindsey's before-school child care.  We leave the house around 7:00, I drop her off at her school, and then I head to work.  She was very excited and loved it.  That part of the new routine isn't going to be a problem.  We'll do that on Mondays, Wednesdays, and Fridays.  Stace will be around in the mornings on Tuesdays and Thursdays to get Lindsey off to school.

Links to sanity

So, as we all know, bad things sometimes happen in life.  We've had our share:  tubal pregnancy #1, tubal pregnancy #2, a failed adoption, infertility, an MS diagnosis, the divorce, the Bulls beating the Jazz in six games in the 1998 NBA Championships, you get the picture.  I can imagine worse, and people have been through worse:  the unexpected death of a spouse or a child's drug addiction, for example.  Thankfully, I've never had to live through anything like that.

I find myself gravitating toward particular anchors when times get tough.  When I was diagnosed with MS (I promise that I don't intend to turn this into a blog about life with MS), I found myself relying on a somewhat odd source of strength:  David Letterman.  Yes, David Letterman.  The diagnosis threw our lives into complete chaos.  We didn't know what would happen with me, whether I'd be disabled, whether I'd be able to work, and things like that.  That was twenty years ago, and so far, the only really bad thing that's happened is that I'm no longer able to go on long hikes with the Boy Scouts, which has been a tough blow, but I'm getting over it.  But at the time, it was pretty traumatic.  I found myself needing something completely stable and reliable, and Letterman's show filled that need.  He was on every night at exactly the same time, and I knew exactly what to expect.  For a while there, that show was the most important part of my day.

That was a long time ago; it's probably been more than fifteen years since I watched more than about two minutes of Letterman's show.  I moved past it.  But in the current situation, I'm again finding myself drawn to particular anchors.  They are:

1.  The newspaper.  I've always been a fan of reading the paper, but it seems to have become a vital component of my life right now.  It's there every day, even on holidays.  It always has the same sections, and I read them in the same order every day.  It doesn't demand anything of me or ask me any questions.  It doesn't wake me up at night (unlike a certain nine-year-old who seems to have developed a fondness for waking me up at 3 a.m.).  I've found that I absolutely must finish the newspaper every day.

2.  Semi-regular exercise.  I don't have time to exercise every day anymore with the recent changes to the routine, but I do try to slip it in at least a couple of times a week.  I get on the cross-trainer downstairs and listen to NPR.  I don't have to make any decisions or tackle any tough issues for a half hour.  I just move my arms and legs back and forth and listen to whatever is on public radio at the moment.

3.  Help from friends and ward members.  Okay, this one isn't quite the same thing as the rest of the things on the list, but help from people has still been important.  Not everyone knows about our situation yet (see the grapevine post from two days ago), but people who do know have been helpful.  Stace needs a couple of days away right now, so our friends up the street are going to take care of Lindsey tonight while Tanner and I go to our General Conference meeting.  That's just one small example.  I don't need meals brought in or anything like that, and the kids and I do pretty well for ourselves, but I appreciate the help that people have given me.

4.  The blog.  Yeah, I know that sounds weird.  The idea to resurrect the blog came a couple of weeks ago when I was feeling particularly bleak, and it's helped immensely.  The focus is mostly on the kids, not the divorce, but I still find it therapeutic even if no one reads it.  Someone asked me yesterday how many people read the blog.  I know I have at least one faithful reader (hi, Mom!), but I have no idea beyond that.  I don't track the numbers.  It's just a good outlet for me.

So there you have it.  One unfortunate side effect of the time I spend reading the paper, exercising, and writing the blog is that I have less time for things I really should be doing, like straightening up the house or building that fifth bedroom in the basement, but those things will come as life settles into more of a routine. I figure that for now, staying sane is good enough.

Stargazing

Tonight, the kids and I went to a community education event featuring our local radio meteorologist.  He's also an astronomy buff.  He talked to us about stars and constellations and all kinds of cool stuff I've always been interested in.  He had a telescope, and we were supposed to be able to look at the sky, but tonight was the first cloudy night we've had in a long time.  The kids still thought it was pretty cool.

We got a raincheck to catch another one of his presentations sometime when the skies are clear, so we'll get another chance to look through his telescope.  When it does clear up around here some night, we're going to take our star maps and lawn chairs, head out to the back yard, and look at the night sky to see what we can see on our own.  Our house is a little bit out in farm country away from the brightest city lights, so we might have a decent view of the night sky from here.

Go, grapevine!

[I'm not sure if I have any non-Mormon readers these days, but be warned that this post will delve into Mormon culture. It could be a bit confusing if you're not familiar with it.]

 

I don't like telling people that I have multiple sclerosis. It's not because I don't want people to know; I don't care one way or the other. It's because it's such a conversation killer. You can be having a peasant chat about the weather, but it's kind of hard to get things back on track after you tell someone that your immune system sometimes randomly attacks the protein sheath around your nerves, thus disrupting the transmission of electrical signals through your nervous system, thus resulting in episodes of disability that tend to come and go during the early stages of the disease but can then become gradually but steadily worse over time, but this is all fairly unpredictable and I've actually done pretty well for the past twenty years except that I sometimes can't walk or climb stairs as well as I would like. Oh, but anyway, it sure does get cold here in Minnesota, doesn't it?

 

See what I mean? It's pretty much impossible to get things back on track after that. That's why, when someone makes a comment about how I'm not moving very fast or how I seem to be limping, I simply give them some lame explanation (Ha! "Lame," get it?) about my legs not always working as well as I would like. It just makes for a more pleasant conversation. (One of these days, I need to do a post about how happy Lindsey is that I have MS, but that's a story for another time.)

 

It's the same way with the divorce. Yes, I'm getting divorced. There's no way to cover that up, and it's even more significant in Mormon culture than in the world generally. Somewhere along the line, people notice that Stace hasn't been around much, and they ask if she's doing okay. I hate, hate, HATE that moment when I have to tell them that well, actually, we're getting divorced, she's already moved out, I have physical custody of the kids, but both of us will still play a significant role in the kids' lives, we're not fighting, there won't be any courtroom battles, and so forth. It's not the answer that people expect, of course, and they're shocked to hear it. They need time to process the information. They don't know what to say. They want to say something helpful, but they're afraid they'll say the wrong thing. I feel bad for them, and I hate putting people in that situation.

 

That's why, although the grapevine is usually a bad thing, I actually want it to do what it's designed to do, which is to spread the news quickly and indiscriminately. Let's get it out there! The news is somewhat getting out there in our current ward, the Farmington Ward, because Tanner has been talking about it with the youth, which is a good thing. Families without youth still probably don't know for the most part. Also, Stace hasn't been a huge presence in the Farmington Ward since we came back, so it won't be as shocking.

 

I think the news will have a bigger impact in our pre-Switzerland ward, the Lakeville Ward. We lived there for many years, and there are a lot of people there who are close to Stace and who go way back with her. I've encountered a couple of Lakeville people because both wards meet in the same building. I can immediately tell who knows and who doesn't know. People who know talk to me differently, sort of a mix of, "Wow, I'm very sorry you have to go through that," and "Wow, you kind of messed up the most important thing that you were supposed to get right." But at least I don't have to shock them with the news.

 

I was at the church for a while last night while the kids both had activities. I spent some time chatting with a member of the Lakeville Ward who's been there for a long time. He obviously didn't know. I kept thinking to myself, "What's the protocol here? Is it inconsiderate of me not to tell him? When he finds out later, will he feel slighted that I acted like things were perfectly normal?" I didn't tell him. I didn't want to have that moment of bringing a screeching halt to what was otherwise a pleasant conversation.

 

I guess I have three choices about how to spread the word in Lakeville: 1) place an item in the Lakeville Ward bulletin; 2) have Gretchen stand up in Sunday School and make an announcement to the ward all at once; or 3) have a plane with a banner fly over the church on Sunday as people are arriving for their meetings. I'll give some thought to which of those approaches would be best.

Still figuring things out . . . .

So, I needed a new washcloth this morning. I wasn't sure where to find one. I finally found a pile in the bedroom. (We still haven't gotten a couple of new dressers and other articles of furniture to replace things we gave away when we left for Switzerland.) I grabbed a washcloth and took it into the shower. It seemed like a good-sized washcloth. Once I actually started to use it, though, I became suspicious. It wasn't working very well as a washcloth. Was this actually a small hand towel rather than a large washcloth? I argued with myself but never came to a firm conclusion.
 

I decided to ask the expert when she arrived at the house to get Lindsey ready for school this morning. Sure enough, Stace informed me that my large washcloth was actually a small hand towel. Dang!
 

That's why I'm going to need my kids to help me determine the difference between clothes that are stylish and frumpy on a 44-year-old. (Just to be clear, I'll be going for frumpy. The words "stylish" and "Ethan" don't belong in the same sentence, unless the sentence is "Ethan's sense of fashion is not at all stylish").