Answers to Questions

Answers to questions

My brother’s wife raised a series of interesting questions for me to address in this forum. I hope the answers are insightful.

1. If you could eliminate one symptom, which would it be?

Mouth-watering question, but I think I would want my voice back. I don’t mean to sound ungrateful; I still can and do communicate verbally, and I can even sing a little, but if I could have my full voice back there is a chance that I could work, at least part-time, and I could sing again to my baby. You know, it is so pathetic: last month I took my PC with me to tuck her in and I played “Edelweiss” on iTunes for her. (At 11 ½, she’s rapidly outgrowing shenanigans like that.) Maybe it’ll be back for my grandchildren.

2. Do you look at people with disabilities any different now than you did before your illness?

Totally. If they obviously “have” something, I don’t hesitate to ask. I understand there is absolutely no shame in it, and they are probably eager to explain. And they are probably wondering what my problem is too.

I used to wonder when I saw people park in the handicap spaces and then just walk from their car. I don’t do that anymore, because I know that sometimes you park in the handicap spot no so much for the walk into the store when your legs are fresh, but you know that when you return it might be pretty dicey. (Most of the time I don’t need to use the spot, and I don’t.)

3. How has your perspective on enduring to the end changed?

I don’t know how to answer this question. It isn't that getting through every day is just so difficult. It's not. Yes, there are rough spots each day but I'm not in pain and for the most part I mostly think about that things I need to get done that day, not endurance per se. Having my health compromised I am much more appreciative of the health I do have and of life in general. I am not trying to side-skirt the question, but I don’t think I have any useful insights here.

With respect to "the end," I sometimes get the sense that, because of how I sound, sometimes friends believe I might be on death's precipice and say something kind to me just in case. And then I don't die for a long time. That is weird. (I'm sorry to disappoint them, but I'm glad too.) I mean, they don't want me to go yet, but it would be ideal if I ever had some dramatic improvement to accompany me, but week after week, I am about the same.

4. Do you live your life with hope of a cure or remission or is it easier to live your life assuming this is will be with you for the rest of your life?

It is kind of a balance. You have to have hope, even though I realize that I may never be restored to full health. I have hope with every supplement I take and with almost every meal I eat. Although with some meals you (and my nutritionist) would think “OK, he’s given up.” But I haven’t. I am getting used to it but I am not resigned to it. Does that make sense?

5. You've mentioned depression as an issue with this illness. Has that gotten easier to deal with or is that a constant battle?

It has gotten easier. I have found that I am much better at living with a limitation than getting one. Back in ’07-’08 I think it was more than just getting a little down, there was something in either the disease or the meds that was really wreaking havoc. But I have learned that the less time you spend thinking about yourself, the better off you’ll be. It is still a challenge to fill my days with constructive activity, especially when a wave of fatigue levels me, but I’m getting better at it. I am nowhere near as volatile and moody as I was in the past.

Favorite sister-in-law? There is no way to answer that on any objective scare; O just love all seven of them!

What if

My brother asked me to consider, and then report on my blog, what I would do first if I awaken one day and my symptoms had vanished. My initial reaction was “Go back to work” which I know is unsensational but it would be a top priority.

I’ve given it some thought, and I guess my first action would be to ascertain if indeed I was still living. I am certain that death will cure me of MS, and I would somehow try to see if that had happened! Assuming I was still living, I would awaken Kara (which might end my life anyway) and I would talk a lot.

Resuming my employment, or seeking new employment, would be the overarching priority, not just because I love to work or I feel there is a spreadsheet out there waiting to be created or data in need of analysis. There would be an economic urgency, as my disability pay stops when my disability ceases, but that is not the main reason either. It is just that over the last 2 ½ years as I have been unable to work, there has been a domino-effect on my self-esteem, my relationship with Kara, and with my children. I would be eager to reverse that fall-out if I could.

Assuming I had done everything I could on the employment front, and I was going back to work tomorrow, I would offer to resume bedtime stories to Natalie, I would sing with Erika, I would call my parents and all my siblings, I would call a few friends, and I would sing some more. A lot. I would be so annoying. (There might be some new fall-out.)

I like to think that I would first offer a prayer of gratitude, but in truth, I thought of all that other stuff first. I guess I would be like one of the nine lepers.

I would love to resume tennis and I would start running. Maybe train for a marathon. Or at least a 10K. Or a 5K. (Do they have 3Ks? You know, just to get you started? Presently I would really struggle to complete a 1K.) I would learn to wrestle. I would take a trip to Utah to show off for one of my favorite gals. If it were winter, I’d take her skiing.

OK, I am done with this musing. I don’t do it often because I am content with living in the present, and learning to live with my limitations, but I guess it doesn’t hurt to dream every once in a while.

Dreaming

In my dream last night I was frustrated that some of my friends we're singing, in parts, but I couldn't join them because of present vocal concerns. This isn't the first time that Dream Dave had to opt out of activities because of limitations. A few weeks ago I dreamed that my brothers invited me to join them in a soccer game, but I had to decline. What were they thinking? I'm no good. I can't run. But wait...it wasn't until I awoke that I realized Dream Dave can do it - he can do anything. He runs real fast without tiring, does bicycle kicks, and scores every time. And he can sing too! I've got to figure out how to confine my nightmare to waking hours!

Megabite

It is called pseudo bulbar and it is a subtle yet terribly frustrating MS symptom. I’ve referred to it before as “loosely tethered emotions” which means it is difficult to stifle a snicker or sob. The former is much more problematic, especially when disciplining teenagers. If their response is 99% defiant and 1% ridiculous, I giggle. Kara says, “It’s not funny!” and I agree, but I can’t help it. Well, maybe I can but I don’t know how to do it.

I learned one way to control it last night. I attended Ryan’s choir concert at the high school. I was alone because Erika also had a concert at the same time. The lights dimmed and the first number began. It was a group of girls completely devoid of my progeny. However, from the opening chords I was struck with the thoughts, “Amanda used to sing here” and “I really miss her.”

These are reasonable parental thoughts but with my condition, I could not afford those thoughts. As my lips began to quiver I quickly tried to think of something else. Baseball. The Angels are in Chicago tonight. Well, all but one; one is in Provo. Cue wave of emotion. C’mon, pull it together man. Pay attention to the number; these girls are singing well. I mean, it might be better with….dang it. You look like a freak, sitting alone starting to shudder. You’re going to have to walk out if you can’t control it. I bit my knuckle. It hurt but it was working.

I am happy to report that I was able to stay composed and enjoy the concert, my finger is still intact, and that Ryan was amazing!!

Signs

Positives

· I had my semi-annual visit with my neurologist a few weeks ago. I was glad to see that I had gained five pounds and she said that my walking is measurably improved (but still kinda bad.)

· Guy at church said I look healthier, asked if I was feeling better. Dry-cleaning lady made a similar observation

· I have been down to ½ a sleeping pill for a few weeks now

· Right arm has been steadily increasing mobility. As a segue into the negatives, I was showing off the improved right-arm mobility to Kara as we were walking through a parking lot and I was made to learn that she does not appreciate public displays of mobility, especially if they appear to be of a Nazi persuasion.

OK, now the real negatives

· A.M. re-entry is still pretty bad; worst 20 minutes of the day. I have to stretch a lot and my body just kind of shudders for a few seconds.

· I still can overheat easily and I need to be careful. It was warm out Saturday and I tried to be a hero and that isn’t good. I did walk around the block last week, and though the last little stretch (3-4 homes) was difficult, It has been worse!

· Voice isn’t worse, and maybe it is a little better than six months ago, but it is definitely still bad.

I won’t go into every symptom but suffice it to say that overall, I’m OK. Some things have definitely improved and others are definitely worse. (See why I don’t update this blog very often?)

Baby Steps

Last night as I lie in bed I realized that it has been a couple days now since I have had an afternoon “ultra tired” spell. That is good. And then this morning as I was going upstairs, I was feeling relatively steady so I decided to try it hands-free. (Truth be told I had a sugar wafer in each hand.) I know, that isn’t on my diet but I made it to the top with no major issues.

In fact, I was feeling so good about the ascent, I considered trying to come down without the handrail. This is more difficult, and potentially more dangerous. It is the difference between falling down the stairs and falling up them. I had nothing in my hands so I figured I’d just quickly grab the rail if anything misfired. After a minor false start, I stepped with my right foot onto the first stair. My left foot quickly followed. I’m good! I could do this! The problem was having each foot stop on each step was going to take forever, so I cautiously tried normal steps. I wavered a little but bottom line is I made it without touching the rail!

Small victories!

Anne Marie

While working with some old census records, I came across the name “Anne Marie.” In 1910 this was not an uncommon name, although usually the second name is not spelled out.

I was reminded of a girl named Anne Marie in my 3^rd grade class. I thought her name a little strange for a contemporary. She was a little overweight and she wore glasses that seemed large. She was very self-conscious. I was never mean to her, but certainly never did anything particularly kind for her.

The most vivid memory I have of Anne Marie was on Immunization Day; shots to the upper arm. We were all a bit nervous about getting a shot, but as a few of us waited in the nurse’s office, Anne Marie became disconsolate. The nurse was kind but a little brusque. Anne Marie cried a lot. And it was the unflattering type of crying. She was wearing dark red polyester pants and a white shirt with maroon flowers. I felt bad for her but, c’mon, it’s just a shot. I was not excited about it either but I was not going to embarrass myself. She even cried for her mommy, who, doubtless was the originator of the crimson ensemble.

As I recall the scene now heart aches. Poor thing was terrified. It’s not fair now because I can now see an 8-year-old girl through the eyes of a parent. This girl that to me was defined by a double name, extra weight, glasses, and polyester was something entirely different to her parents. I’m sure she was their prize, the most special and beautiful soul. They gave her the most beautiful name they knew and dressed her in the cutest clothes they could. Who was I to look at her with the slightest bit contempt or maybe worse, indifference?

Even more than having parental perspective, I understand the nature of fear a little better. This fear was a little irrational but rationality is not a fear prerequisite. Anne Marie didn’t care if we saw her cry. She didn’t care that a boy in the room thought her plain or thought her glasses were large. If I could go back in time I would not care so much about some things either. I would maybe have sat down next to her and said, “It’s OK Anne Marie. Cry if you need to, but everything’s gonna be OK. Your friends are here. We’re all a little scared but it’s going to be OK.” I could have even taken her hand and said something to take her mind off the shot; maybe compliment her outfit.

But I can’t go back. All I can do is be a better comforter today. I just hope that I can recognize the Anne Maries in my life today.