Saturday, May 31, 2008

Two Gems

I have often considered the similarities between my daughter Natalie and my mother. They are both blue-eyed brunettes and both had two older sisters and an older brother. (Mom also had an older half-brother.) They were both born during the 2nd week of the month, and in a year ending with “8.” And of course I think they are both beautiful.

Anyway, years ago I mentioned to my mom that her father, Grandpa Farrer, seemed like a quiet man; he never said much to me. (He passed away when I was 13.) Her response to this seemingly benign observation surprised me. She said that it was likely due to his surprise that she could produce such remarkable children. I am not sure if she was trying to compliment me of if Grandpa was not too openly affectionate and praising to the apple of his eye. It was probably the former.

I have kept this thought in the back of my mind. I don’t think I’m on death’s door or anything, but often I tell Natalie how proud I am of her and how wonderful I think she is. She really is fantastic in every way. While I don’t believe that I have lofty or unrealistic expectations of her, I can’t see myself being surprised at any level of greatness she may attain or anything wondrous that she may accomplish. I’ve only known her for a quarter of the time that I have known her grandmother, but if she accomplishes even a fraction of what mom has, she will be a huge success.

Friday, May 30, 2008

Greetings!

I can’t believe it has been over seven months since I went to work. It seems like two years. Don’t get me wrong; I always preferred home to work, but I do miss it. I worked with so many wonderful people, friends in the truest sense.

I shouldn’t be surprised that after 15 years of playing a role, that it is an adjustment for Kara and I to have those roles overhauled so drastically. I was the provider. Kara says that I still am as we are receiving disability payments, but for me it was more than just getting money. It was me leaving home and working hard for 10-12 hours a day and then coming home. I find myself wondering if there isn’t something I could do. I mean, I’m not totally incapacitated, right? Part-time? Anything to help the family budget?

I’ve had no luck in the publishing arena yet; but what about something less elaborate? Could I work a half-shift in a day care facility? The vocal issues alone probably disqualify me from that. Shoe shine guy? I don’t see well enough. A security guard? One that gets to sit down and doesn’t need great vision? (Or never has to actually apprehend anyone?) I don’t think so. What do old folks do? Wal-Mart greeter? wm Perhaps, if I could have a stool and they didn’t mind if a lot of non-verbal greetings. I could go on, disqualifying every idea with one or more symptoms, but what is the point of that? Suffice it to say I’m trying to think of something. Anyway, until I figure something out, or get better, I’ll just continue to be a blogger!

Wednesday, May 28, 2008

Drinking the Kool-Aid

I’ve found that at times I don’t fully accept my limitations which results in a fall or utter exhaustion or something.  Much more common, however,  is the opposite. I catch myself, on occasion, “drinking the Kool-Aid.” By this I mean that at times, my knee-jerk response is “Oh, I probably better not do that” even if there is no good reason. Last summer, Ryan was invited to go wakeboarding on the local lake. I was invited to tag along. Owing to my illness, my first thought was “I can’t.” But I challenged myself -- What symptom would prevent me from riding in a boat? I couldn’t think of any, and I went and had a nice time.

It is hard to explain. Once Ryan said that he wished someone could play tennis with him. Sorry, that is a definite “no can do.” But wait, is it? While it is true that with my vision issues and leg weakness I cannot play very well, or for very long, there is no rule in the MS handbook saying that I can’t get out there and try. (I just made that up; I don’t think such a handbook exists.) Again, I went and we kind of played. It was frustrating, and I didn’t provide him any competition, but I was none the worse for going. It isn’t like pneumonia. I can’t spread it and resting doesn’t really help heal it. But could I fall or something and get hurt? Yeah, I guess, but the risk seems too low at present to become hermetical. And besides, if I am unwilling to take any risks, am I not accelerating the effect of the limitations? Who wants that?

The flip side of this is when I did something that I probably should not have done. A year and a half ago one of my home teaching families did an intra-ward move. The priesthood was called upon to help and I couldn’t bear the thought of not helping. I reasoned that I would just not carry heavy things and maybe look for opportunities to assemble and disassemble things. Maybe I could stay in the moving van and direct traffic or something. I tried to execute my plan, but as I sometimes do, I didn’t really know my own limits and I ended up with a pretty bad strain of the lower back. Maybe it would have been worth it if I did much to help, but I really didn’t. Bottom line is that I should have left moving to stronger backs and healthier legs.

Everything I am faced with first passes the binary filter of “can” or “can’t.” Thankfully, almost everything is still “can.” But there is a second test of “should/shouldn’t” where “shouldn’t” just means that the cost/risks outweigh the benefit. I’m still trying to figure out that balance. I think that I have been erring too much on the side of caution but I think I need to push myself a bit more.

Tuesday, May 27, 2008

Indispensability

While I was still working, I believed the phrase:

“No one is indispensable.”

It was a good reminder that as important as we may consider ourselves to be in the Company, we are indeed replaceable. I witnessed the departure of quite a few co-workers that I considered to be extremely talented in their field, only to see another replace them and the company as a whole seemed to move forward uninterrupted.

Last month my boss and co-workers were kind enough to all sign a birthday card for me. I was honestly surprised, and pleased. 9 of 15 signers mentioned that they miss my humor. The others didn’t cite specifics, but the point here is that no one said, “I miss your keen financial insight” or “No one can reconcile accounts quite like you.” (Perhaps they do feel this way, but no one was willing to write something that hokey!) Although I invested thousands of hours practicing and improving forecasting and spreadsheet abilities, that isn’t what is missed. The witty comments at staff meetings flowed effortlessly, and that is what they remember. Not because it was effortless, but because it made them smile and it was human. I suppose in that regard, everyone is indispensable in a way. I stand corrected.

Monday, May 26, 2008

Speech Therapy

I met with the speech therapist Friday. In my case it is more like voice therapy. I learned a lot, and got a lot of helpful advice, drills, and larynx stretching and relaxation techniques. She told me that whispering instead of talking was not helping. In fact, it could actually be hurting so I have to continually remind myself to talk, even if barely audible, instead of whispering.

I have seen some modest improvement already.  I think it going to be a slow, gradual process of relaxing the muscles and restoring vocal strength. I suppose that is what is implied in the word “therapy.”

Going through this has shown me that our voice is a blessing and a miracle that we take for granted every hour of every day. At least I did, and still do.

Sunday, May 25, 2008

Strength

This afternoon after a home teaching appointment, a somewhat shy 8-year-old girl named Taylor wanted to tell Ryan something. My curiosity was piqued. She told him that in Primary Sharing Time that morning, Sister Jensen had commented that in every child's family, the dad was probably the strongest person. Natalie’s hand shot up and she said, “Not in my family; it is my brother Ryan.”

I was amused at Natalie’s candor and hoped that she didn’t derail Amy from her point too badly. Ryan is stronger than me, no question. He has been growing and lifting and wrestling and I have been weakened by this illness. Anyway, Ryan was atypically modest and told the girl that he didn’t think he was stronger than me.

Outside I told him that it was OK, I know that he is stronger than me. I’m OK with that. He said that if I hadn’t gotten MS, I would still be stronger. He can believe that if he wants to, but I doubt it.

When I was 16, one of my priesthood leaders was a son of a brick-layer. He told us once that the saddest day in his life was the day he realized he could lay brick faster than his father. I don’t recall passing my dad in physical strength, speed, or agility, but I probably did at some point. My paternal benchmarks were more set on things like intellect, patience, creativity and spirituality. I don’t know the feeling of surpassing him.

And to my great comfort, there are signs that my son also has some becnhmarks for his dad that are in areas other than brute strength!

Thursday, May 22, 2008

First (and last?) Infusion

Tuesday I had my first Tysabri infusion. It went very well in that the nurse was good and I had no side effects. I feel no different than I did before. The thing about MS treatments, they don’t do anything to address present symptoms; they are designed to help lower the probability of an exacerbation in the future. But they might not. I guess it is better than nothing, but you actually have no way to know if it is helping.

The only problems I had during the visit were with check-in and check-out. We rode up in the elevator with an elderly couple, who were going to the same place we were. Of course we let them go first and even got the door for them. They seemed very kind, but at the window, man they were pokey. Apparently one of them was a new patient and I stood there for 18 minutes waiting to sign in (7 of those minutes were when Mrs. Pokey looked for her driver’s license.) Kara was seated and shot me two “incredulous” looks. I mean, I can understand a little slowness; I feel like an 80-year-old some days, but that was crazy slow.

The infusion center is at my neurologist’s office so I was familiar with the office. When I went to check out (2 ½ hours later) there was a back-up at the check-out desk. I’d never seen that before at this office. I was 6th in line so I took a seat. After a few minutes of no movement I looked up and guess who was checking out? That is right. And they were there for a doctor’s visit, not a two-hour infusion. Why were they still there? Wait, dumb question. The desk was trying to schedule a follow-up appointment and had to repeat the information several (like six) times. I know it is insensitive to poke fun at old people, especially in a neurologist’s office. I was in no hurry nor really bothered. I was just was humored by it. At least I knew the date to avoid for my follow-up!

Unfortunately, the worst part of the day was ahead. When checking out I got ready to make my co-payment - $20, maybe $25.

“OK Mr. Hixon, that will be $1,040.”

I said nothing. I was in a stupor. Dollars? Seeing my look, she said, “Wait, it won’t be that much. The procedure is $5,200, but you only have to pay 20% of the “allowable” amount which is somewhere around $2,500. Oh, yeah, that is a lot better. Only $500. So lemme see, if I move my family to a pup tent and we hitchhike, and rob banks, maybe we can afford this. C’mon. It isn’t worth that, for my budget or anyone’s. Remember, you have no way of knowing if the treatment is even helping. The drug maker’s marginal cost is what? Eighteen cents?

I know my blog audience includes people that are rich, and people that are generous, or both, but I'm not soliciting, or accepting donations. I put the amounts only to give you a sense of either how jaw-dropping it was (or how cheap I am.) If Bill Gates told me he would pay for it, I still wouldn’t do it, not at $500 a pop. That is crazy. Let's see: An experimental treatment for me each month or feed Ghana? Hmmmm. I’m hoping that there is still some miscommunication within the complex insurance-reimbursement labyrinth but if not, I won’t continue the monthly therapy. It is that simple. I can to back to the shots for $35 a month.

Monday, May 19, 2008

New Treatment

Tomorrow I start a new MS therapy. The drug is called Tysabri and is delivered via infusion. I hear the infusion takes an hour, and then they watch you for an hour. What are they watching for? Should I start juggling or doing magic tricks?

This drug was pulled from the market back in '06 owing to some rare, but pretty austere side effects. Since the drug was re-released in 2007, they've prescribed it as a monotherapy and have had much better results. Also, I received a blessing Sunday and part of it was that “the side-effects would be minimal.”

Well, I better go practice my juggling!

Sunday, May 18, 2008

As a Child

During the onset of my symptoms, I was troubled. The physical symptoms, mostly weak legs, were not bad but mentally I was torturing myself with worry. One afternoon, I was watching Ryan’s baseball game when a young girl and her mother sat in the bleachers in front of me. The girl, maybe 10 or 11, was handicapped and could not even walk without help. Her condition was clearly a lot worse than mine, and she was just a kid. I had 40 years of good leg use, and even compromised at 41, they still worked a lot better than hers. But was she as “troubled” as I was? I don’t think so. She seemed to be pretty focused on her pretzel. Why? How? What is the difference?

I think part of it is that kids have an ability to accept reality, giving no thought to what could have been or might have been. Consequently, they feel no self-pity. I was a kid once and although I didn’t have any dramatic disease or such, I was “afflicted” with several ailments. I had a “club” foot and wore special shoes and underwent some home therapy. Worse was the eczema. When it got bad, before bed my mother would apply the ointment to my arms and legs before wrapping my limbs in cellophane. The problem was this didn’t stop the itching and through the night the Saran wrap was no match for my ravenous fingernails that would be blood-stained by dawn. OK, that is a bit dramatic, but the point is I don’t remember ever thinking “Why me?” or even imagining life without these little afflictions. They made up me. It just “was.”

I also considered my sister-in-law who has been severely handicapped since an accident when she was five. Every once in a while she has an emotional “melt down” but for the most part, she is content and focused on present cares only. She is thinking about going swimming or her next meal, not about her limitations. Could I get to that place? Could I stop thinking about how it used to be?  Could I learn to instead focus on what I have and what I still can do, without worrying about the timing or the severity of my future limitations?

This is still a work-in-progress. Mentally and emotionally I am a lot better than I was, but I feel I have a long way to go yet. I felt as though I reached a “mental milestone” when I stopped looking at MS as an interruption to my life and instead accepted it as an unavoidable chapter in my life.

Monday, May 12, 2008

On Blessings and Faith

When my MS symptoms began (and several times since) I sought a priesthood blessing. Why haven’t I been healed? Obviously the priesthood is powerful enough. Perhaps my faith was lacking.

In truth, I did wrestle with the concept of faith in this context. Was the feeling that I didn’t necessarily “deserve” to be healed undermining my faith? “Deserve” isn’t the right word; its just that all my life I have been overwhelmingly blessed. The bright sunlight of family, friends, health, love, clip_image002education, testimony, professional and service opportunities shone on me brightly and constantly. The day when one dark cloud crept over the horizon, it seemed unfair to ask, much less expect, that it immediately vanquished. Even given the current health challenge, my blessings-to-trials ratio is still obscenely high.

Can He heal me? Without a doubt. But I am already SO indebted to Him; He owes me nothing and never will. Will He heal me anyway? Maybe. I believe His compassion is infinite but I also am convinced that His ways are not our ways, and most of the time we only see the smallest sliver of the canvas. Besides, if the priesthood healed all illness of the faithful, we’d probably have a 200 year old prophet and faith would be a thing of theclip_image004 past (and the lines at the Chuck-A-Rama buffet would be terrible!)

So you have submission to God’s will on one hand and deep faith that you’ll receive the blessing on the other. How can these two seemingly good and important things be reconciled? I think that this is a flawed argument. We’re not counseled to have faith in a specific outcome. Would it not be better to have faith that the blessing giver is sensitive to the Spirit and faith that whatever blessing he pronounces will come to pass? Faith isn’t just a vain hope on a self-prescribed wish list.

I’m not saying that we should be defeatists and just give up. When Elder Neal A. Maxwell learned of his leukemia, his decades of teaching submission to the Lord’s will started to undermine his natural instinct to fight the disease and to aggressively seek a cure. His wife Colleen pointed out to him that Jesus’ first plea on that great and terrible night was “If it be possible, let this cup pass from me” before saying “Nevertheless, not as I will, but as thou wilt.” Said Sister Maxwell, “It must be permissible to plead.”

It is an excellent point, applicable even to those who aren’t faced with a terminal illness. Submission to the will of God and faith in the power of the priesthood are not mutually exclusive.

Good News on the Voice

This morning I saw an otolaryngologist about my vocal/swallowing issues.  Part of her exam is to send a scope down your throat, through your nose.  It was terrible. 

Anyway, the good news is that I don’t have throat cancer! (Not that I thought I did, but she seemed pretty happy about it.) She also said that I don’t have vocal paralysis. I figured I did have something like that. She said that the top muscles of the larynx are really tight, and when I speak I tighten them even more which restricts the voice.  She referred me to a speech therapist that might me able to help.   There is no pill or shot for this; it is a matter of learning to relax those muscles and learning to speak again.  I see her on May 27.  Also I’m going back next week for a swallowing test, which I am absolutely dreading.

Bottom line is that despite the unpleasantness, it was an encouraging visit.

Thursday, May 8, 2008

Compassion Insight #4

It is the time of year that the pool water is just warm enough to swim in if you are under age 13, and just cool enough to keep everyone else out. Recently, Erika and her cousin Emma were trying to get themselves “psyched up” to jump in. They repeatedly reassured each other that it wasn’t “that bad” and that it would be easier than inching in. But it was hard for either of the girls to really commit to the plunge. Finally, Emma did it and as is typical, her persuasions continued but now they were more supported - she had done it and was in the water.

I know it is a stretch but I see an analogy here. Before I got “sick” in 2006, I didn’t know how to feel when I learned that someone had a terminal or chronic illness. I mean, I felt bad for them, but that vicarious sorrow lacked texture. Can I say that? Such news horrified me, but somehow I just couldn’t really internalize the sorrow. I wasn’t heartless; I just didn’t have a frame of reference.

Since my disease made its unwelcome debut, I feel that I now have a frame of reference. I’m in the pool. I don’t have every illness, but having this one seems to somehow help me feel more deeply for others. When my sister told me that she had a blip of skin cancer and she was waiting for further diagnosis, not only could I totally relate to those long days of uncertainty, I knew she’d soon be reconciled to the news, good or bad. I was concerned, but not alarmed. She would be OK. Maybe this is unfair to say; I have never had cancer or any kind of terminal diagnosis. But I have had “something very wrong” deep inside me and felt as though my world was crashing down. I’ve been in that pool, and although the water is cool, it isn’t as cold as I feared AND you do get used to it.

I won’t list all the people I know that have taken ill the past 2 years, but I will mention just two situations that are far worse than mine. A friend in my ward (younger than me) was diagnosed with cancer and another friend’s mother died of ALS. These are much worse cases than mine but somehow I feel that I can relate. Again, maybe it is unfair but I’m just saying that I have a reference point. I’ve done nothing heroic or even commendable; I just marvel how one little chronic illness seems to have changed transient sympathy to enduring empathy.

Regarding compassion my friend Jon wrote the following:

One thing I've learned from my sweet wife is that the capacities of the heart seem to multiply after the rest of the body has gone through a particularly painful period. Ironically, this heart stretching sometimes seems to increase the ability to both comfort others and feel deep pain for others.

The scriptures teach of One who “hath descended below them all” and that the Lord understands our sorrows. How is this possible? Did Jesus have MS or cancer? I don’t think so. But I believe he did suffer in body to an infinite extent that He has the perfect “frame of reference.” Maybe he didn’t lose his voice, but in losing his life and atoning for our sins, He earned perfect and infinite compassion. We can’t go into any pool, no matter how icy cold the water, but that He isn't there.

And He assures us that the water is not “that bad,” at least not colder than we can handle.

Wednesday, May 7, 2008

Compassion Insight #3

OK, I’m back. I think this series will end at 4, although#4 isn’t written yet. #3 is about showing compassion and #4 is on feeling compassion. They are not lectures or lessons, just what I have learned.

#3 may sound strange, or obvious, depending on who you are. The insight is that there is comforting power in touch. I can’t explain it, but something about human touch adds force to the spoken word. A hand on the shoulder or a lingering or two-handed handshake can convey something that words cannot.

Once I was visiting with a couple after a stake meeting, friends from long ago. We discussed my health, and their children. When the conversation turned to how my children were dealing with my health issues, I was suddenly overcome with a wave of emotionality. I can’t explain it, I really don’t come to tears easily, but it had been a long day and thoughts that were very close to my heart overpowered me. I had no choice but to make a hasty apology, sit on the couch, and bury my face in my hands. These wise friends said nothing. The woman sat on the end table and just ran her hand across my shoulders. I can’t put into words what was communicated by both she and her husband by this seemingly innocuous gesture, but it calmed my soul.

I think back to 2000, when my brother and his family were in that horrible wreck. I spent most of my time in the Amarillo hospital with my 6-year-old niece. I spoke with her a lot, I helped feed her, and even helped the nurse wash the blood from her hair (a 45 minute process), but did I provide as much comfort as I could have? No, I don’t think so. Might I have lovingly placed a hand on her head or shoulder or held her hand? Look, I’m not fishing, I know, I was there and provided a measure of comfort, I’m just saying that had I known then what I understand now, I think that I would have been a better comforter.

With this backdrop, read verse 36 of 3 Nephi 18.

And it came to pass that when Jesus had made an end of these sayings, he touched with his hand the Disciples whom he had chosen, one by one, even until he had touched them all, and spake unto them as he touched them.

images1 I understand that this is describing a calling, and probably a setting apart, but I think there is a reason that Mormon pointed out that Jesus touched them while speaking to them.    Maybe it was only to emphasize that the resurrected Savior had a tangible body, but maybe it was also to emphasize the power that touch gives to the spoken word.

I am not a naturally “touchy” type person. Kara isn’t either. But don’t underestimate the comforting and even healing power of touch. The end.

Sunday, May 4, 2008

Compassion Insight #2

Insight #1 was that there is sorrow that the eye can’t see. Insight #2 is part of the problem of #1. This one might anger you. Sorry about that, but it is just what I’ve learned, like it or not.

The insight is that the afflicted person will often be, say, “less than candid” about what they are going through. It isn’t a tendency to the dishonest, but I have found that a lot goes through my mind before answering the “How are you?” inquiry. I’m not talking about the casual asker, I’m referring to the person who is sincerely asking and is genuinely concerned. Still, I noticed an inverse relationship between how well I felt and how “filtered” the answers were. When I felt the worst, I found myself desperately trying to sugar-coat my answers. Why? These are people who want to know and care. Yeah, but caring goes both ways. I care about them too. How can I look into their loving eyes and try to tell them just how wretched I feel? It can be such a downer with a very limited and lopsided upside. I can’t do it, and I don’t believe I am alone.

I promise that I’m not lying now. I wrote the “My Day” post to be as detailed and honest as possible. I really am OK at present. I’m just saying that when I hit a rough patch in the future, I can’t promise you that I will come clean with it. I just can’t. Maybe it will be easier on this blog.

So, what do we do? We want to be of comfort, we long to be compassionate, but the sorrow may be non-visible and the afflicted isn’t sharing all of what they feel. If I knew the answer to that, it would make a good Insight #3, but I don’t. I guess it never hurts to be “over compassionate” if there is a doubt. (Again, not talking about me, just trying to help us on the giving side.)

I will say that some people can see right through the filters. I can’t, but going back to the miserable weekend I described in Insight #1 back in September ‘06, Sunday was better than Saturday, but still bad. I wasn’t really up for attending church but I hoped that it would provide me with some distraction to the discomfort. My Bishop greeted me in the hallway, grasped my hand and asked somewhat sternly how I was doing. His eyes bore through me. I looked down and muttered something about having had better days. Surely he has worry enough without me piling on. He didn’t let go. He made me look at him and said, “You’re not OK; I can tell.” Then he asked what he could do to help. I told him that I would appreciate his prayers. He actually asked the entire ward to help in this way.

During sacrament meeting I was seated with my family in the overflow when during one of the talks I noticed my friend Don leave his pew and exit from a door near the front of the chapel. I knew that he had endured a bad week and he is in so much constant pain. He hadn’t been coming to church much recently because of it. Being somewhat sensitized, I decided to step out and check on him. I knew I couldn’t make his pain go away, but I could show him that I cared and was mindful of him. I caught him in the hall and he seemed happy to see me. He did admit that his back was really hurting. Just then, we were surprised to see Bishop Martin come through the same door that Don had. He said that he saw me step out and he was worried about me. It was like that book A Fly Went By. I don’t know that I’ve ever noticed a bishop leaving his meeting over such a concern. When I told him that I only had stepped out to check on Don, we shared a chuckle, and three-way hug, and a tear. He assured us that all would be OK.

It was a great example of Alma’s words:

And now, as ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another’s burdens, that they may be light; yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times and in all things, and in all places

We can’t always expect full disclosure from the person sorrowing, but if we are sensitive, I think we are entitled to a measure of inspiration. I know Don isn't "coming clean" with me but I kind of understand why. Like Bishop Martin’s good example, if we can learn to comfort those who stand in need of comfort (even if they don’t readily admit it), we can come into the fold of God.

Saturday, May 3, 2008

Compassion Insight #1

This was the hardest to put into words, consequently, it may be lacking impact. It was an epiphany, really. Please understand that I share these personal stories knowing full well that my vocabulary is insufficient to capture my feelings, and perhaps more importantly, the insights were gained during periods of “tenderization.” By sharing this I do not mean to evoke pity. The story I’ll share today occurred more than eighteen months ago and I’m glad to report that I haven’t had any days since that were as bad.

It happened like this: It was a Saturday in September 2006. I had just completed my first series of an intravenous steroid treatment two days earlier, and I suspect that I suffered from a bad combination of side effect, a Friday night interferon shot, and the disease itself. It was a miserable day. There was an indescribable restlessness and overarching discomfort. No matter how I tried, I could not get comfortable or find peace. It was relentless. There is no pill to pop for relief. Life went on in our home – swirling with activity – and visually, I looked fine but I was really suffering. It was as if someone were continuously playing a dissonant chord through the frequency of my being. Most of my skin was hypersensitive, especially my legs. My feet began burning, I don’t know why they felt this way, but they were not literally on fire - I checked.

After 12 hours of this misery, I felt emotionally spent, but that didn’t matter; the discomfort continued. I was so frustrated.

Desperately seeking any form of relief, I went to the backyard and sat on the edge of the pool. I figured that either my feet would be cooled or the pool would be heated! It helped a little and I was grateful for the pool. I sat under the stars and prayed for relief, and just cried because the discomfort was so acute and so relentless. I had been a good sport all day but now I felt as if I were giving the metaphorical "uncle."

I was glad that I was alone because I wasn’t seeking anyone’s pity. It was then that I got the glimpse. It is hard to explain, but I felt as though I was just getting a taste of sorrow in a world that sadly is filled with it. There is such a need for comforters. I bemoaned the fact that I couldn’t or didn’t see this when I was more capable of being of service. My thoughts were on people that are caught under the spigot of sorrow more deeply and for longer than I have known: my mother-in-law since the accident in 1977, my sister-in-law since the accident in 2005, my friend Don who has had challenges since he was wounded in the Korean War. I know my dad is suffering a lot of pain, silently.

We sing it all the time “sorrow that the eye can’t see.” I got a glimpse of this, and a taste of this, and I think it has made me more sensitive to others' pain. I don't mean to imply that my view of the world became pessimistic or dreary, just that I was given to understand that there is much sorrow around us, most of it unseen, and the need for comforters is tremendous.

Friday, May 2, 2008

Compassion Insights - Intro

OK, I have provided an honest, non-sugar-coated description of how I’m doing in “My Day” below. This describes ‘how” I’ve been doing generally for the past 4-5 weeks, and if you don’t want to invest a chunk of time reading it, the short answer is that I’ve been pretty well. There are challenges and limitations but I’m OK. This was a necessary pre-cursor to what I am going to try to write now and over the next few days.

Through this health challenge, I have learned some valuable lessons on compassion. Why don’t I share these lessons? Well, first, I don’t know that I can put these insights into words, but I’ll try. Second, it doesn’t make for light reading as each of these lessons was learned while my heart was, say, “tenderized” to such things. Finally, I don’t know that these insights will be “news” to anyone; you likely already know these things.

Even though I was thrice Elders Quorum President and have had countless service opportunities in the church, these were lessons for me. I do not consider myself a naturally compassionate man and on the infrequent occasions that I found myself face-to-face with a need for compassionate service, I was awkward at best.

I remember one day about 10 years ago my sister was very depressed and sad. I happened to stop by her home unexpectedly and she was crying. Despite my desire to help her, I couldn’t find any words of cheer or comfort. Perhaps a bit more harrowing was when I found myself at my brother’s bedside in a hospital in Amarillo. I was there and I wished to help, but it was awkward. Why doesn’t compassion come easily for my own siblings who I love dearly?

Not surprisingly, I have found natural compassion for my children when they are distressed. When Natalie was a little younger, she had somewhat frequent bouts with an upset stomach. I spent a lot of time crouched next to her while she underwent the somewhat harrowing pain associated with digestion problems. I held her hand, I sang to her, and I tried to provide comfort and encouragement.

I guess my point is that it was within me, but barely. I mean the desire was there, the love was there, but life was just flying by so fast that I just didn’t notice the need or worse, when face-to-face with a need, I didn’t know what to say or how to act. I was ripe for the lessons that I will try to put into words over the coming days.

Thursday, May 1, 2008

My Day

I know that concerned family and friends sometimes wonder how I am feeling. They also may wonder what I do all day. Hopefully, this detailed write-up of my typical day will shed some light on those two questions. I won’t go into a symptom-by-symptom explanation; suffice it to say that my days are peaceful. My voice has worsened steadily over the past eight or nine months, but I can still be heard. Ask my kids. Walking is a little unsteady the first few steps, but then it is OK. If I tackle something big like Wal-Mart, my legs start to give out entirely. A month ago this happened just after check-out, and I was with Ryan and Erika. I just hopped on the back of the cart and had Ryan push me to our car. Erika giggled at this. It was kinda fun, actually. We did get some looks. Anyway, I am learning to sense (and to avoid) these things.

Vision is better first thing in the morning, so I usually spend some time reading Montel Williams’ book “Living Well.” He’s been fighting MS and this book really touts nutrition and natural foods. I’m eating a lot better since I started reading it.

Per Kara's request, I do not participate in the morning flurry. She has it down to a science and I just get int he way. By 8:15 a.m. the house is empty and I figure it is a good time to shower and dress, and start straightening. Somewhere in here I eat and take my daily Adderall pill that helps with energy levels. During morning hours I work on my tasks list. A lot of these things can be done from my study. The list includes such things as paying bills, budgeting, monitoring, and working on Don’s life story. I’ve also been asked to help with the Stake History and I usually have some High Priests or Ward Historian work to do. I also keep tabs on the stock market, family blogs and web sites, and check my e-mail. These are the best times because mornings I feel pretty good.

During the middle of the day I try to spend some time outdoors, usually light hedge-trimming or pool boy work. Just light duty stuff, skimming, emptying baskets, etc. I can stretch this 10 minute task into an hour just because it is so nice to be outdoors this time of year. I sit by the pool and relax and contemplate. It is very peaceful.

I return to my study in the early afternoon but after the sunlight, vision is a lot worse so I listen to stuff: Book of Mormon, iTunes, XM radio, General Conference addresses, audio books. It is awesome. I can still see the monitor, just not as good.

Kara and I sometimes do things together like run errands, go to the temple, and sometimes lunch. But for the most part, she has a million things to do and she needs her space. She knows I’m available if she needs me to do something, but I try to stay out of her way.

No matter the level of my spirits, at precisely 3:05 p.m. they are elevated when my Joy comes home. She always gives me a hug, and after her daily report, we usually play a game or two together. All good so far, right? Then usually around 4 pm I start feeling fatigued. Not the “I need a catnap” kind rather the “I need to lie down and cease all non-vital functions.” I begin to feel tired and mildly uncomfortable and irritable. This generally lasts until about 7pm and then gradually improves. Some nights I am up for making dinner; some evenings I’m not even up for chewing spaghetti.

The evenings are usually nice. I review Ryan’s homework with him, follow a ball game on the Internet, play another game with Natalie, and watch Idol with my girls, or Survivor with Kara. I usually go to bed around 11 p.m., and I take a half of a sleeping pill to get me there. (I’m trying to wean myself from those.)

So, you see, how am I doing? Quite well.