November 21, 2003


Here's another post where I talk about life and stuff. It's written as much for me as anything, but you're welcome to read it. Leave comments if so moved to do so, or not - whatever works for you - including not reading it at all.

It all started with a bowling ball.

At least, for both of my wife and I, that was the first memorable manifestation. My wife and I used to do quite a bit of bowling, and at one point, she wanted to get a new ball. She had been using a very light ball, and I convinced her that she needed to move up in weight a little bit.

After the first few times of using the new ball, Liz (my wife) complained of backaches. Within a month, she was laid up after ‘throwing out’ her back. Having no experience in back problems, I was surprised when it took a couple of weeks for her to get better. Liz blamed the new bowling ball, I said nonsense, it was a fluke.

It happened a couple more times over the next three years, and the Air Force doctors did the normal things and prescribed the normal exercises and rest. Each time was a little bit worse and took a little longer to come back from.

After being transferred to Germany, my wife really wrenched her back and this time our medical care was provided by the Army. The new doctor put my wife into the hospital to recover this time and ordered a whole bunch of tests based on Liz’s medical history. I have mixed emotions about this doctor, because he was the first to realize that something wasn’t ‘right’ with my wife, but at the same time he decided to use that week in the hospital to force my wife to lose some weight and quit smoking. Yep, Liz was in enough pain to warrant hospitalization, but he puts her on a restricted diet (as if the food wasn’t already bad enough) and refused her permission to go outside for a cigarette. Liz spent a miserable week, pissed off and doped up.

An aside: in those days in military hospitals the patients were frequently tasked to work as their condition allowed. You would often see patients mopping hallways or laying in bed doing paperwork. A sergeant once brought my wife a stack of files and showed her what they wanted done. A couple hours later the sergeant returned and found the files in the trash can where my wife dumped them. Liz’s response was “I’m not in the military, kiss my ass.” They didn’t try again.

The test results came back and the doctor could only tell us that something was wrong, but couldn’t pinpoint it. My wife’s blood chemistry was severely out of whack, and they didn’t know why, nor how to correct it. The most frightening part was his description of what was happening (wildly simplified): In order to build muscle strength you tear down the muscle a little bit, and it recovers stronger. In Liz’s case, the muscle didn’t recover stronger, it didn’t even recover back to where it was. Every time she hurt her back, it got weaker and would keep getting weaker.

He also told us that at some point in the future, Liz would need a wheelchair to get around. No maybe about it. We could delay it by being careful, but it was inevitable.

Things went downhill for Liz slowly. Her back problems continued and got worse. One year she spent seven months bedridden in two long stretches. It was costing us a fortune in fees to rent a powered hospital bed, and we finally just bought one. Because we lived in a multi-level house and the bedrooms were upstairs, the main floor living room became our ‘bedroom’ and we gave oldest daughter the old master bedroom. I slept on the floor in case Liz needed anything during the night.

Remember the first ‘Seriously’, and it’s point about keeping a good attitude? As far as we were concerned, life was still good. We knew that other people were worse off than us, and if there was one thing that the doctors could say for sure, it was that whatever it was that Liz had, it didn’t seem to be life-threatening. Count your blessings, and all that.

Liz fought every bit of the way. It took me a year to convince her to get a cane to help her walk, and she looked at it as a defeat, even while knowing that she moved around so much better with it. It was her knees as much as my nagging that finally brought her around, because they’re a mess from the frequent falls she was taking.

I learned though that what she lost in mobility she more than made up for in reach. I quickly figured out that I had best be nimble or, better still, distant when I teased her.

By now, we had a name for her condition. Fibromyalgia. In many ways it’s current status is like Muscular Dystrophy was when Jerry Lewis started his telethons. A lot of doctors still don’t believe that it exists. Diagnosis isn’t a concrete yes-or-no proposition. We’ve had doctors tell us that Liz is just stressed out, or she needs to take more vitamins, or get more exercise. Hers is one of the most extreme cases they’ve seen.

The primary symptom is pain. Imagine getting a charley horse, or a back spasm. Now imagine having it last for days or weeks.

Technically, it’s a problem with her neuro-transmitters; those little things that tell the nerves to feel and muscles to contract or relax. Sometimes as she was walking her brain would tell her leg to move, but the neuro-transmitters wouldn’t pass along the message, and taking that next step meant falling down because your brain knew that it had given the right command, and expected that leg to be there. Except it wasn’t. The other side of the coin was when the neuro-transmitters would continuously fire, causing the cramps and spasms. Sometimes her hand (for instance) would just stop working, paralyzed in position for some time, until things returned to normal on their own.

Pain. Everyday. The condition itself isn’t life-threatening, but one of the leading causes of death among those with fibromyalgia is suicide.

The wheelchair was another defeat, but life was still good. We had each other, and we had great kids. They grew up before their time, helping dad keep up with things. In some ways it was like being a single parent, especially when Liz couldn’t drive anymore and had to give up her job as a teacher. She kept involved in life as much as possible, doing volunteer work and trying a variety of home-based businesses. She agonized over not being able to contribute more to the family, and I constantly tried to ease the guilt she felt.

Her family never really understood, and barely tried. Liz kind of grew apart from them because of it. They refused to realize how much our lives had changed, and blamed Liz for her condition without realizing they were doing it. I quietly fumed and was there for Liz when she needed to vent and rage against them. Once in a while I would try to make them understand, but I could tell they just didn’t get it. That changed when Liz and the girls went to visit them for a week, and mom-mom and pop-pop had to deal with the chair and ramps and store aisles and all the other daily bits of life without me around to automatically take care of it. To their credit, and my everlasting gratitude, they learned a lot that week. Things got a lot better between them and Liz.

We learned a lot too. Liz would get cabin fever because she depended on me to get out of the house, and felt bad asking. She thought I’d mind because we didn’t just ‘run’ anywhere. Getting her anyplace was a time-consuming process, but well worth it. She was easier to live with when she wasn’t cooped up, so it wasn't like there was nothing in it for me. Plus, I considered it time well spent, because we were together.

Liz often asks me why I stay with her. I tell her it’s because of her parking privileges.

I’ve been chewed out more than once by little old ladies for being mean to Liz. We’d be in line at the store, oftentimes Liz would have a basket in her lap so I could push her chair instead of a cart. Liz would be saying something and unloading the basket onto the belt, and I’d tell her that the best thing about shopping carts was that they didn’t talk. Liz would tell me to shut up, pay and push, because I was nothing more than hired muscle. Sometimes I would ask the checkout lady if there were a bus route nearby, so I could push Liz in front of one. We’d get some weird looks, but most folks could tell that we were madly in love with each other.

Once, at the amusement park, I let her go at the top of a path. I laughed my ass off as she careened downhill, trying to slow down and yelling “you bastaaaaaaaaard!”

We also got to be quite the crusaders for handicapped access. Our local Lions club replaced it’s front doors because they were a designated voting station, but wheelchairs couldn’t fit through them because of the center jamb. Two stores modified their register layouts because Liz raised enough hell (up to the county level) about wheelchair access and, more importantly, fire safety. I once got into it with the manager of a computer store (major chain) because they had the aisles packed with stacks of extra inventory, and I was kicking them over one by one as we shopped to make room for the wheelchair. He wanted to call the cops, but hesitated when I wanted that too. The county supervisor got involved and I assume they’ve changed their ways, but we’ve never gone back. I refuse to give my money to assholes.

You’d be surprised how many times someone pulls up in front of a store and blocks the wheelchair ramp. If they have the grace to apologize when they come running out and see us waiting, we’d figure they learned the lesson and be more aware next time. If they didn’t care, I’d scrape the chair along their car getting around it. Call the cops asshole, and make sure you mention how you were threatening a lady in a wheelchair.

I have crip tags on my truck, but I don’t park in a handicap spot unless Liz is with me.

Several years ago, Liz’s doctor told her about some new drugs just coming onto the market, and how they might help her condition. They started her on a combination, and have tinkered with the combinations and dosages ever since. The drugs are very expensive, and we had to fight with our HMO each time a refill was necessary. Fortunately, our doctor loved to fight the system, and we’d eventually get approval. That’s gotten better with time. When it looked like a new HMO wasn’t going to cover the cost of her medications, I made plans to take a second job, because they’re worth it.

Thanks to these meds, Liz can work, drive and even walk without a cane again. She’s not close to 100%, but she manages just fine. On the rare occasions where her prescription refills are held up because of some HMO snafu, within a week Liz’s condition begins to deteriorate.

It scares hell out of her. Her other major fear is that at some point the medications will lose their effectiveness for her. We have no idea when or if that will happen, but we’ll deal with it if it does, like we’ve done up to now. With lots of love and patience and understanding, and crip jokes.

These drugs aren't painkillers. She lives every day with pain that would bring me to my knees. I can't bear to think that it might be worse than that, but I know that it frequently is. When I can tell Liz is hurting, then I know it's horrible, because she's gotten very very good at hiding it.

Her doctor thinks she might have Multiple Sclerosis, but Liz won't have the tests done to determine that for sure. She's afraid of the results. If she doesn't want to do something I don't wheedle or nag because she's old enough to make her own decisions. I also refuse to baby her. I'm there to help and assist and take care of what she can't by herself, but she's an adult and I treat her as such.

When Liz regained her ability to drive, one of the first things we did was rent her a car, and her and the girls took a trip to Canada. As often as work allows, she’s gone. It’s as if she’s trying to sate herself now with road trips and freedom, just in case there are darker day ahead. Mookie will attest to that, more than once the kids would wake up for school one morning and I’d tell them that mom would call that evening from wherever she was. Often Liz will take off with no more destination than ‘west’ or ‘south’. She loves to explore new cities and areas, and I’m trusting her to figure out where we’ll move to once we complete our lives here in the DC metro area. She’s the traveler and I’m the homebody, so while she’s out stretching her wings she knows that she always has a place to return to, and someone who’s patiently waiting.

You may have noticed that I’m very fond of ‘yin and yang’ and terms like that. Now you know why. Liz and I are very much a team, the sum infinitely more than mere husband and wife. She completes me.

One more thing, her condition isn’t all-consuming in our lives. It’s there, and we live with it, but it’s a tiny aspect of our everyday. I do like her parking privileges though.

Posted by Ted at November 21, 2003 10:04 AM
Category: Seriously

Touching, Ted. Your wife is obviously in good hands, and I'm glad that the two of you are making a go of it... and that you've got good parking privileges. :-)

Seriously, though, as Thanksgiving approaches, the two of you are a success story -- a couple that didn't throw in the towel when things started to get difficult.

Hugs to your entire family.

Posted by: John at November 21, 2003 11:42 AM

I'm incredibly impressed with the both of you. Thank you for sharing.

Posted by: LeeAnn at November 21, 2003 01:31 PM

So often when a wife is seriously ill, the husband can't handle it (divorce rates of cancer patients back me up on that horrible generalization) says a lot about you that you can find the humor in it, Ted.

Posted by: Jennifer at November 21, 2003 04:33 PM

I always said "Hire the handicapped, they're fun to watch!"

Usually followed up with "Ow! Dammit, put the cane down..."

Posted by: Ted at November 21, 2003 04:50 PM

We should count our blessing everyday. I can't imagine what it's like to face a doctor's gaze. I mean, I, m'self, haven't had so much as a common cold in ten years. I just can't fathom dealing with a serious physical challenge. Will of steel required? All the best to you and yours, blog bro'!

Posted by: Tuning Spork at November 22, 2003 12:41 AM

This is an amazing story -- and I appreciate you for sharing it with us. Have you ever thought of sending it into a magazine? I used to work for Easter Seals, and we were always looking for "poster children" -- this is a story that needs to be shared beyond the blogosphere, because it's so hopeful and touching. (I am a magazine editor; it wouldn't fit my demographic, but I know there is probably the "right" publication out there that would kill to tell your story!)

Posted by: Dawn at November 22, 2003 04:34 PM
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