Deliberate Dave

I know it has been a couple weeks since I posted to this blog. I am sorry to anyone who may have repeatedly sought an update but found none. Ironically, the changes in my condition can vary by the hour, but usually each day is about the same as the previous one. I feel lucky that the past few months have been somewhat stable. It makes for good living but uninteresting blogging.

Over the past couple weeks I do have to admit that my walking has worsened. Not crazy worse, nothing dramatic, please don’t be alarmed but I think it is more noticeable. I walk gingerly. I have not been doing my "distance walking." I am unsure if this is a cause or a result of this latest swoon.

Another word I would use to describe a lot of things I do is “deliberate.” Example: You know how when you get into your car, you sit down in the car and swing your feet in almost simultaneously? Or you step in as you’re sitting down? I noticed that I split up things like that. Sit. Swing. It isn’t a problem, it is just deliberate.

Also, the “exertion fatigue” seems to be way worse. It is maddening. For example, last night I heated some soup for Erika and then had to lie down for a few minutes. C’mon – soup heating? It isn’t that strenuous. We even have an electric can opener! To be fair, I did trudge up the stairs to ask her about the potential meal, but still!

I don’t get that whipped every time I do anything, but I can’t really see it coming. (This is not some elaborate scheme to evade Thanksgiving dishes at Mom and Dad’s.)

Man, I can be such a downer. I'm just trying to be honest, knowing that readers care and that I will be with a lot of family within a couple of weeks. I'm trying to pre-empt comments like "Dude, you're deliberate."

Actually I don't care if anyone calls me names. What am I going to say? "Mommmm! Roger called me Deliberate!" She would just say, "Deliberate-Schmeliberate."

Rest assured that I don't need anything; I know I already have your sympathy. I'm not "sick" as much as "broken." Well, slowly breaking, I guess. For now. But I am not unhappy.

Lengthening my Amble

I have been neglecting my jogging efforts recently. I don’t really have a good excuse; I have time and the weather has been very temperate. I have noticed a worsening in my walking over the past month or so, especially the first few steps after sleeping or sitting for a while, but once I get going I’m fine. Other than that I feel fine though, good, actually.  But the walking trouble can’t be the reason. I could have used this excuse from the beginning. It’s probably just laziness.

However, on the advice of my neurologist, I’m foregoing jogging. She said that safety concerns aside, it would be far better to walk 1,000 meters every day than to jog for 200 and walk 200. So starting tomorrow I’ll start pushing myself with a different emphasis. I’m not totally giving up on the trotting idea; perhaps it will just have to await a turn for the better.

On Helpfulness

One of the more vexing problems related to my limitations is, surprisingly, domestic helpfulness. I know, who would have thought? Here’s the thing: as I’ve mentioned before, I’m not much help around the home, but it isn’t for lack of effort. I’m not the patron saint of helpfulness or anything, but I try. Unfortunately, my efforts have resulted in marital strife rather than marital bliss. What? How?

Here's the general pattern: I take something on, without being asked, and usually, despite a harrowing effort, I don’t do it right, mess up Kara’s system, or leave the job in a state that requires Kara’s immediate attention to complete or remedy. Even if I do it well the value of the task rarely justifies the amount of energy I spent on it. I'm afraid it is a manifestation of denial on my part. Then I'm all wiped out and cranky.

So while the effort may be praiseworthy, the result is my being totally useless for a stretch or it results in more work for Kara right now, and she’s already stretched pretty thinly. When you are subconsciously expecting a medal, and you instead get ire, the result can range from discouragement to discord.

I do not mean to imply that Kara is ungrateful. I am just admitting that my zeal could be channeled more productively. We are making strides, however. I have learned that dishes, vacuuming, and wiping down anything are safe zones. Preparing a meal is pretty safe as is making the bed. Laundry help is not usually welcome because she has a system and I invariably mess it up. Anything involving the purchase, installation, or transportation of electronic equipment is a definite "no."

Don't get the wrong idea. I'm not Mr. Clean all day, dusting this and scrubbing that. Despite my illness I could be doing a lot more than I do, but, after all, I am still a man. C'mon, let's not get crazy.

This morning Kara asked what my plans were for the day. I told her a few things I had in mind but she vetoed two of the six things. She continued to tell me a few other things that she didn’t want me to do. I’m the only man I know that has a “Honey Don’t” list!

My Boy

Recently, a friend and his wife had their first son. I congratulated him but he said, jokingly, “Reading your blog about Speedos and girlfriends is scaring me!” He was teasing, I know, but lest there be any doubt from any of my readers, I wish to be clear in one thing: despite the dirt bikes, video games, and ill-advised purchase of European swimwear, my son has been and continues to be an unspeakable joy to me. I’m afraid that parenting of teens sometimes gets a “bad rap” only because it is easy to quantify things like text messaging and curfew violations. I have yet to find the words to adequately describe parental gratitude and delight.

And Ryan is special. He has been congenial (and extroverted) since before he could speak. He is musically gifted. His natural brightness is only obfuscated by his extraordinary procrastinating abilities, which I hope is transient. But these things are not why I say he is special.

These past three years I have observed him deal with sadness and trials that I never had to bear, especially as a kid. I refer to both the declining health and abilities of his dad and to the tragic death of his 2-year-old cousin Sarah.

In our church, when a boy turns 12 he receives the priesthood in a simple ordination ceremony at church. Although by no means required, the boy traditionally wears a new suit for the occasion. Grandparents attend the ordination if they can. It isn’t a huge deal, like a bar mitzvah, but it is special. In the summer of 2005 Ryan’s big day was approaching. He had a new suit from JC Penney and a new pair of shoes. He would look so grown up on Sunday, the day after his birthday.

None of us foresaw that he would be first wearing that suit on his birthday, Saturday, at Sarah’s funeral. I’ll never forget the sight of those new shoes covered with big tear drops as we both carried her coffin. He didn’t say a word. He understood that the birthday and priesthood celebrations would be muted. He never questioned this or complained about it. I think he grew up a lot that week.

With respect to my illness that began in 2006, I’ve witnessed a level of compassion in him that is well beyond his years. Most of the time, he is just good old Ryan, belligerent, self-focused, displaying characteristics typical of his age and gender. But if you watch him very closely, especially when he’s with me, you may see an undercurrent of concern. Little things like how he takes great care when parking in the garage to leave me enough room to get out comfortably, then he waits in the garage for me. On those days when I’m a little wobbly, without being asked he’ll walk very close to me and offer assistance. He notices. He always keeps an eye out for me. A good example of this can be found in my post called Steady on my other blog back in April (before I started this blog.) If you haven’t read it and would like to, click here. Ryan periodically asks me how I’m feeling; he really wants to know. He even reassures me on days when I’m down. I hate that he feels this burden but I love it too, and am completely humbled by it.

One Saturday afternoon just the two of us were home and I needed to take a quick shower. While showering I inadvertently kicked over a couple of shampoo bottles. (It had nothing to do with MS; it was more because the MRS. buys too much at Bed, Bath and Beyond.) Within seconds I heard Ryan’s voice through the door, “Are you OK Dad?” I asked him later what had prompted this query and he said he had heard something and just wanted to be sure I hadn’t fallen.

The thing is, the sound wasn't that loud. Who listens to their dad showering, just to be sure he's OK? What other boy would do that? It’s like having my own guardian angel in the unlikely personage of a teenaged boy.

Good Friends

A small, insignificant parental disappointment of mine is that not one of my children like jam or jelly of any flavor. I don’t know the difference between jelly, jam, preserves or marmalade, but I love it all, especially raspberry, blackberry, peach or strawberry.

A more serious parental lamentation is that adolescence seems to have robbed me of friendships with my children that flourished when they were younger, especially with my son. We shared so many little inside jokes and either one could make the other giggle with only the slightest provocation. One day eight years ago, we were seated in adjacent chairs getting our hair cut and I made a gesture to get him. He giggled and giggled, and kept telling me to stop, with his slight but endearing lisp.

I understand that children mature, and that relationships change, they have to, but that doesn’t mean I like it. Also, although I don’t like to admit it, I believe that part of the alienation results from some of the symptoms of my illness. Energy levels and patience have both declined precipitously and I am not as light-hearted and fun as I once was. I am trying to address these issues.

This morning I enjoyed a brief respite. I was taking Ryan to driving school, and because we were running a few minutes late, neither of us had eaten breakfast. I offered to buy him a donut at the shop that is next to the driving school. Because we were already late, he declined. I offered to get it for him and bring it to him. He declined the offer, explaining that they would be leaving in the training car as soon as we arrived.

Letting playful Dave out for just a moment, I asked, “Can I get one for you anyway, but just eat it myself?” He didn’t miss a beat and replied, “Sure. I’ll have a jelly-filled.”

Angel Lost

Four years ago (and a couple of ward splits), I was called as ward clerk over finances. Even with my professional background in finance, there was a lot to learn. Fortunately the ward clerk, Steve, who trained me, was as knowledgeable as he was patient. He and his wife Nita had two children roughly the ages of my youngest, and they were approximately my age, give or take a year or two.

A hallmark of this family was how kind they were, especially Nita. So soft-spoken, never saying anything unkind or even flippant. I think she was the compassionate service leader in the Relief Society, but maybe not. She wore compassion like a cloak. Last month she gave the benediction at stake conference when Elder Nelson was there and I thought, “I’m glad they chose her; she is charity and purity embodied.”

Because I was in the lobby, I could not see her. Kara told me that if I had seen her, I would have seen that she was not well, ravaged by cancer. Yesterday, in an oft-repeated reminder that mortality is not deferred by virtue, Nita died. I’m sure there is at least one more ministering angel in heaven today.

Sadder but Wiser

One of my favorite MS medications has the unfortunate side effect of making it difficult to fall asleep. Because of this I routinely take a prescription-strength sleeping pill every night. Sometimes I manage on a half. Anyway, Monday I felt I needed a whole pill for various reasons. (Maybe part of this was because the Angels were eliminated that night and I didn’t want to lay awake thinking about the botched squeeze play and happy Red Sox.)

I thought I’d give the pill a head start, so I took it before going upstairs to tell Kara good night. While with Kara, I remembered a few things I needed to discuss with her. Five minutes tops. When I got up to leave the room, she noticed that I was really off-balance. She knows that means sleeping pill and chastised me for taking it before coming upstairs. I just laughed it off. OK, I’m a little dizzy but I’ll hold the hand rail going down the stairs, I would be fine. It wouldn’t be that bad.

And it wasn’t. I made it down just fine and despite a few harmless wall brushes, I made it to my bedroom just fine. I could tell that I was slightly more impaired than I usually am but I’m getting used to it, and pretty adept at compensating moves.

I turned off our bedroom light, and turned to make the final two or three steps to my bed. The combination of the turn and the darkness (which really plays with my balance) resulted in me helplessly crashing down into a free-standing full-length mirror. There was no broken glass or broken flesh, but wow, did it hurt. I hit my head pretty hard and I somehow broke the leg off the mirror. Two days later and I still have no visible bruises or anything, just a sore ear and neck.

It wasn’t pretty (though no one saw it, including me) and it wasn’t funny at the time, but it was educational. It was so preventable. I will be more careful about when I take the sleep help and be more cautious in the dark. As I went to sleep I considered that as bad as I felt at least I didn't miss the bunt on a suicide squeeze in the last inning of an elimination game with the score tied!

(My handiwork)