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.

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.

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.

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.

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.

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.

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.

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.