More Complete Answer #2

This evening my sister-in-law asked a good question, and I didn’t give a very complete answer. Today is the second day of my Arizona trip. Everyone has been so kind to me and sensitive to my condition/limitations. This evening as we were walking from car to restaurant, we had to step over a log. Rachel was near me and asked if I needed any help stepping over it. I did not. She then asked if I ever get tired of people asking me questions like that.

Good question. In truth I don’t mind at all, and I know these concerns are born of pure charity. I understand that my problems are not only difficult to describe, most of them are not visible. So how are others supposed to know my specific limitations? They can’t. I’m not even always sure. Family here is definitely assuming the worst to insure against possible insensitivity. I appreciate that, and am humbled by it.

But I do wish that I could hide my MS so they wouldn’t fuss so much. I am not comfortable in the role of “the disabled uncle” or “the pitiful one” even though I kind of am. I don’t relish the extra attention, but I kind of need it. I just want to be “David” not “poor David.” I try to say and do things to mitigate concern, but despite my best efforts to be “normal” I can’t hide some things. I am not too nimble on my feet and, no pun intended, but my “godfather voice” shouts “something is really wrong here.”

So, am I bothered by the special concern others show me? No. Do I wish I didn’t need it? An emphatic yes. Does it matter how I feel abut it? No, not really. It is what it is and I’m fortunate to be encircled by so many caring people.

More Complete Answer

I wrote in the last post that I fielded a lot of questions about my health condition during priesthood Sunday. I was not able to give a complete answer then for various reasons, so I’ll try to answer it here:

Question: With all these limitations and challenges, how do you stay so positive?

Answer: I’m not always positive. I get down, no question. My nervous system is compromised, and although there are “good” stretches and “bad” stretches, compared to pre-illness they are all bad. The constancy is discouraging.

So how do I stay as positive as I am? I mentioned Sunday that despite my challenge, my “blessings-to-trials” ratio is still obscenely high. Of course I count among my choicest blessings my wife and children, but also my priesthood and my testimony have been tremendous blessings. On top of that are the many service, educational, and professional opportunities I have enjoyed.

Also, of significance is my extended family. We all love our parents, but I consider mine to be legendary. As part of their legacy they have given me five remarkable brothers and four loving, talented, and beautiful sisters. And add to that their eight spouses (so far) and 33 nieces and nephews (just on my side of the family). And it isn’t the eye-popping quantities in which I feel blessed. I enjoy being with every single one of them. Who has that? Seriously, putting the kids aside, I have nine siblings and I get along well with every one of them. Additionally, I consider each of the men my sisters married to be a dear friend. (I’ve known two of them since we were teens.) And all four of my brothers’ wives are an inspiration to me. Who is encircled by so many wonderful and caring people? I’m not trying to brag, everyone has their own unique blessings, but just the thought of this blessing quickly dissipates discouragement. I have learned that gratitude and self-pity cannot coexist, and that the latter leads to no where good.

Further, there is something about loss that makes us more grateful for what we have. Because I cannot run, I am tremendously grateful that I can walk! Does that make sense? Like everyone, I love my children dearly, and I didn’t think my heart could be any more tender towards them but then three years ago one of my young nieces was suddenly and tragically taken from us. The loss made me acutely more grateful that my children are safe and well. I don’t mean to trivialize that loss by comparing it to my functional losses, but in both cases my heart seems to have become more sensitive and caring.

Lastly, I understand the plan of salvation, or plan of happiness. Life (and health) on Earth is transient. I believe that Christ's victory over the grave extends to victory over declining health. But isn’t it a bummer that I got this disease at such a young age? Well, most people with MS are diagnosed between the ages of 20-40 so in that regard I was one of the fortunate ones. Also, thousands and thousands of people have suffered from far worse at younger ages.

But isn’t it hard? Absolutely. I hate it. But does that matter? No, not at all. What does matter is my attitude, and that is something I can control. I cannot guarantee that I will always be positive, but today I feel grateful for all that I have.

Lesson #13

I was asked to teach High Priests Group today and my group leader asked that before beginning the lesson that I spend a few minutes teaching the brethren about MS, and how it has affected me.  He really wants to improve our sense of brotherhood in the group, and last week Brother Sean endured a grilling on himself.

I was careful not to spend too much time on this because my words are limited AND we needed to get to the lesson. I provided a cursory overview of the disease and my current limitations. I took about five minutes to do this but there were a lot of questions, from disability insurance to how my family is affected. They were interested in what I do each day, and the topic of blogging came up. (A couple of brethren present have read them.) My bishop suggested that I continue to field questions and just put the lesson on my blog. It was a funny comment, but I know he was serious.  It was a good idea, actually, as I can probably do the lesson better justice textually than verbally, especially since time was short.  So here it is:

------------------

In the first section of the lesson there is an amazing story about how a prayer of one man, Newel K. Whitney, was answered. Joseph Smith traveled 250 miles on a sleigh from New York to Kirtland, Ohio and recognized Brother Whitney right off as he had seen him in vision, supplicating Heavenly Father. As remarkable as that story is, this lesson is not about prayer or prophets or miracles. The story was more about Joseph’s obedience to a prompting, even though it was terribly inconvenient and difficult. The paragraph following the Newel Whitney account reads:

By May almost 200 more Saints from New York had made their way to Kirtland—some by sleigh or wagon, but most by barge on the Erie Canal and then by steamboat or schooner across Lake Erie. In this move to Kirtland, as in the many other challenging circumstances of his life, Joseph Smith led the Saints in following God’s commandments, no matter how difficult the task.

Adherence to the principle of obedience has been, and continues to be, one of the most important characteristics of the Lord’s people.

Said Joseph, “The object with me is to obey and teach others to obey God in just what He tells us to do. It mattereth not whether the principle is popular or unpopular, I will always maintain a true principle, even if I stand alone in it.”

This is very wise counsel.  We don't check ourselves against what any other man may or may not be doing.  It is irrelevant.

----------------

This past week my son got his learner’s permit. Many of you have been through the singular experience of teaching a child to drive. I have, and with experience comes a little wisdom. After we were in the car, seat belts fastened and mirrors adjusted, I soberly said, “As you are driving, I may offer some suggestions like which lane to be in or even where to turn, but don’t do these things if it is unsafe at the time. You are responsible for the driving, and even though I say ‘Get in the right lane’ you are ultimately responsible. You can question the advice, or ignore it if it is unsafe.  We can discuss it later.”I continued, “However, there is one word that if I say it, you must obey immediately with no questions asked.”

Any guesses what that word is?

I’m sure you know; it is “stop.” If I say that, there is no room for debate, analysis, or discussion. Anything short of immediate and total compliance could be disastrous.

As Latter-day Saints, we have received a lot of counsel from Heavenly Father through our priesthood leaders. Everything is important, but what would you consider to be the “stops?” The things that, if we ignore or rationalize or hesitate, even a little bit, can destroy us.

Hard Stops

• Word of Wisdom violations
• Any form of abuse
• Any degree of pornography

These are the first three that came to mind.  Anything else? I’m sure there are others, and I don’t mean to under-emphasize any other gospel precept.  For example, I believe that inattention to personal prayers and scripture study will lead to our destruction, I am only trying to make the point that some counsel demands immediate and total compliance.

----------------

Joseph Smith said:

We have been chastened by the hand of God heretofore for not obeying His commands, although we never violated any human law, or transgressed any human precept; yet we have treated lightly His commands, and departed from His ordinances, and the Lord has chastened us sore, and we have felt His arm and kissed the rod; let us be wise in time to come and ever remember that ‘to obey is better than sacrifice, and to hearken than the fat of rams.’ [1 Samuel 15:22.]

What do you think that means? I’ve always struggled with this New Testament passage because I didn’t see sacrifice and obedience as mutually exclusive opposites. Shouldn’t e obey AND sacrifice? Isn’t our obedience sometimes a sacrifice? What does it mean?

I think that it has reference to the “new law” supplanting the old. Yielding our hearts and changing our actions trump any form of rote or manual show of piety. Is it better to learn to not covet, or to covet and then kill a goat to please God? More relevant to our day and circumstances, is it of more eternal value to us to overcome our pride or bid generously at the youth service auction? To truly cleave to our wives or to buy them flowers on our anniversary? In both these examples, both choices are good, but the latter without the former is somewhat hollow. Your thoughts? (This is where blog-a-lesson loses something)

Hum Bug

I have really been working my throat this week. It is difficult to tell how much it is helping. I do know if I give it a good massage right before speaking, I seem to get a couple dozen decent syllables. If it seems strange to you that I write so much about my voice, you are not alone. I think it is strange too. Who would have ever imagined such a problem?

Anyway, Wednesday night as I was putting Natalie to bed, I had an idea. I would try out my newly revived skill of humming. I told her that I was going to hum a bedtime tune and I wanted to see if she could identify it. I know the humming is still pretty rough, so I tried Edelweiss, a tune that is very familiar to her. I had to focus, relax, and take a deep breath before I began. I did only the opening stanzas. It was pretty bad. She just stared, absolutely no idea. Maybe this wasn’t such a good idea.

Last night I tried it again, with Good Night Ladies. It was much more on tune and she identified it right off. Yea for us! Tonight she asked me to do another song. I tried Down in the Meadow and she is now 1-for-3. But it is OK. When I told her what I was trying to hum, she giggled as sweet memories enveloped her. Seriously, you could see her eyes light up with remembrance and when I left the room she was still singing the tune. I have a feeling this may become a tradition even if I never hum recognizably again; I can at least tell her what I was would have sung to her!

Raspy and Thin

I am traveling to Phoenix with two of my daughters in a few weeks to see our 26 family members there. I haven’t seen any of them since Thanksgiving. They will probably notice that I have dropped about 20 pounds since then. They will notice that my voice is barely audible. I sound like The Godfather. I hope it doesn’t scare the kids.

I think it is interesting that neither of these things are direct symptoms of MS. The weight loss is due to a side-effect of my medication that suppresses appetite (I think it is really Dexatrim in disguise.) Also I am just eating better. The strained talking is mostly from compensating for some vocal weakness that is from the disease. But I walk about the same as I did last fall, and most days I feel less fatigued than back in November.  There are a few other things that are markedly worse, but nothing too apparent (unless you get me laughing!) 

I don't consider myself to be high maintenance or super fragile or anything so I hope that I am not a burden.  I can't wait.

Giggles and Tears

By doing the vocal drills I think my humming is getting stronger, but my talking is as bad as ever, both volume and pronunciation. On my way out the door to see the speech therapist this morning Kara said, “Tell her it isn’t working.”

At the visit I was discouraged that even the humming seemed very weak. Part of the problem is that I try too hard because I know she’s listening, which undermines the whole process. I KNOW this, but seem to be unable to do anything about it.

Little aside: One of the “minor symptoms” from my MS (that doesn’t get much press) is that my emotions seem to be very loosely tethered. When something strikes me as funny, even remotely, I start giggling and it is nearly impossible to stop at once, even if snickering is inappropriate. It can be a real problem, especially during speech therapy. I cannot speak AT ALL when I have the giggles. My therapist, Allison, knows about this problem, there is even a word for it. At least once per session, a drill or something sets me off. It is terrible. I have explained that my snickering is not correlated to internal joviality; she seems to understand. Today I had a run in with the other end of the emotional spectrum. Here’s what happened:

When I did so poorly on the drills, Allison went to get the other therapist for a second opinion/new ideas. This other woman had me talk as she fingered my throat, a lot. It was at least a minute, and although she wasn’t rough, I winced a few times. It kind of hurt. It is a very singular experience, but I kept focused on my job and held off the giggles. She said that the muscles in my larynx were so tight they were almost bound, especially on the right side. She said that it was reversible, but there is no pill, shot, or surgery. I just need to manually, slowly pull them down and keep on practicing. I asked how often. She said a little austerely “At least five times a day.” I told her I would do it every ten minutes if it would help. Blisters on my throat would be a small price to pay to get my voice back. It is quickly becoming my biggest medical problem, and it isn’t even MS! (It is related, but not a direct symptom.) She counseled against overdoing it.

After the 2^nd lady left, Allison handed me a little story to read as she worked my throat. I was to read it with a gentle tone but with as much vocal strength as I could muster. Simple, right? The immediate problem was that it is hard for me to read from paper. Dang. She had forgotten that I have vision problems too and apologized but I told her I could do it slowly. And so I began. Her hand was working my throat as I slowly read a children’s tale about rainbows and leprechauns. It was hard to make out the letters and harder yet to speak but it was audible. A few sentences in and I was struck at how pitiful the scene was. I’m not one for feeling sorry for myself, but at that moment I felt so pathetic: 90% mute AND half blind. I couldn’t go on. I choked out a hasty apology, buried my face in my hands and cried. Giggling isn’t the only free-roaming emotion. It only lasted a few seconds, and she understands that just as giggling doesn’t connote levity; tears are a tremendous exaggeration of sadness.

When it passed I tried again. It was hard to make out the words. Then it dawned on me that the story wasn’t important; it was just to give me words to say. Not only am I naturally gabby, I have lots of things committed to memory. I asked her if I could just recite something rather than read. She thought it was a great idea. I asked if I could do it in Spanish. She didn’t care what I was saying, as long as I was talking. I began to recite, in Spanish, D&C 121:33-46. My pronunciation was horrid but she didn’t know it. I did about six verses. Now that was a funny scene, but I didn’t think about it. I stayed giggle-free. (With hindsight I realize that I probably should have done The Articles of Faith, in English.)

Some Things are Better Left Unsaid. Some Aren't.

Despite my diligence in speech therapy, it is still hard to talk and even harder to be heard. It has been interesting how many things I think but leave unsaid. Most of things that I don’t say, really didn’t need to be said. They weren’t crucial, or necessarily unique or funny or additive to the conversation. Even when my vocal abilities return, I should be more judicious about what I choose to say. I’m afraid that the old axiom that “God gave us two ears and one mouth for a reason” ironically fell on deaf ears with me because I was too busy talking!

But there are times when the challenge does make me a little sad. I’ve written many times about my love of singing Hymns and this continues to be a cost each Sunday. And today a friend called that I haven’t spoken with in several months. It was nice to hear from him, and I really wanted to talk to him about several things, but he could barely hear me despite my best efforts, so I had to truncate the call earlier than I would have liked.

I am glad that I still have my digital voice here!

Prayer of Faith

Our priesthood lesson a couple weeks ago was on the role of faith in prayer. We talked about the role of personal effort that should accompany every request. We were hard-pressed to think of things that we pray for that over which we have absolutely no influence. I realized that effective prayer is an inward process. When we really think about it, it is a time to re-examine priorities, show humility by trying to align our priorities with the Father’s plan, and then asking for divine assistance to help us effectuate change. This is worlds different from a “wish list” prayer.

Consider the difference (some of which we discussed in class):

Wish list prayer:

1. Lead the missionaries to those who are prepared to receive the gospel
2. Bless the youth of the church
3. Help us to be kind to one another
4. Bless all those who are sick or afflicted

Prayer of Faith

1. Help me find and recognize opportunities to share the gospel with my co-workers/neighbors/friends
2. Bless me with wisdom as I teach my children
3. Please help me to check my selfishness so that I will be more kind to others.
4. Help inspire me to find ways to be of service and comfort to Sister Anderson.

Far be it from me to discredit common prayer phrases that are uttered in faith but I just realized that I could probably be a more active participant in my own prayer thought-process.