Blessing Found

I found another one. OK, so I’ve mentioned that I cannot sing at present, which really limits my activity choices during hymn-time. Whereas in the past I was 95% focused on singing a part and 5% focused on the words, now it is maybe 90% on the words. Have you ever just listened? I think it invites the Spirit more readily.

The balance of my focus is listening to others’ voices. I hear a lot of beautiful voices.  However, what impresses me even more are those that aren’t. I sat next to a friend in priesthood opening exercises yesterday and man, he was bad. I don’t know if he can’t sing or just doesn’t sing but the monotone-ish sort of thing he was singing did not even faintly resemble “I am a Child of God.” But that’s OK. It touched me that even though he has zero singing talent, he was still singing. The plea “Help me find the way” is valid whether on- or off-pitch.

Contentment

I’ve been listening to Helen Keller’s autobiography this week. What a story! It is unbelievable how well-educated and deeply read she is. Her expressive vocabulary is twice that of mine – a seeing, hearing fellow. I mean, I knew that she is on the Alabama quarter but I did not know that she lived to 88, which makes her a contemporary of mine by three years, and I did not know that she was born with vision and hearing, but that illness robbed her of these before her second birthday. I also did not know that she became fluent in German and French. Amazing. I found this inspiring:

Is it not true then, that my life with all its limitations touches at many points the life of world beautiful? Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therein to be content.

Helen Keller

I do not compare by measly “limitations” with hers even though we’ve both used that word. I can’t even assign a fraction, but nonetheless I was inspired with the wise words that she wrote at age 22, over 100 years ago. 

Payback

Kara had a good idea on bedtime singing: They should start singing to me! Last night as I was putting Nat to bed I asked her how many nights I sang to her. She guessed 300. Try 3,000 sister. At least! I told her that it was time for a little payback. She liked the idea, and sang “You are my Sunshine.” It was so sweet and I am sure it was better than I ever did. Tonight I am going to request Edelweiss.

Ready or Not

During President Hinckley’s funeral, his daughter Virginia Pearce said that when President Hinckley learned he had cancer, at age 95, he did what any of us would do: he mourned the loss of good health. The take-away for me is that no one is ever ready for bad health news. I sometimes feel that chronic illness came too soon for me, somewhat ravishing my middle age years. But if President Hinckley mourned the loss of good health as a 95-year-old widower, I suppose that no one ever feels ready. Three of my siblings’ fathers-in-law have passed away, relatively young. Were they ready? Two more have been diagnosed with cancer. I’m sure they weren’t ready for that. I’m done feeling “cheated.” I’m lucky I don’t have a terminal disease, and it is what it is. You are never going to be ready. I had a great 40 years without MS, and now I am to have a great 40 with it.

Happiness

And it came to pass that we lived after the manner of happiness.
2 Nephi 5:27

During the dark, early months of my MS, I wondered if my days of “living after the manner of happiness” were over. I mean, I didn’t feel sorry for myself, I was still surrounded by my greatest joys, but man, the discomfort was so pervasive and prospects for remission were bleak. In addition to this, my body was grappling with the interferon shots that made me feel feverish and achy. In addition to the physical toll, is the emotional toll, just knowing that you have a chronic illness, with letters. It was hard enough just to cope, much less feel true happiness.

I am happy to report that I do feel now that I am living after the manner of happiness again. Each day is a blessing and my daily routine can be so peaceful. My physical limitations have never been greater, but so too is my knowledge of how to work around these limitations. I seem to do better with having a disability than in getting one. You get used to it.

Hidden Sorrow

Sunday, as I listened to the words to one of my favorite hymns “Lord, I Would Follow Thee,” I was struck with poignancy. These lyrics inspired me to press forward when I was a strung-out Elders Quorum President.

I would be my brother's keeper;
I would learn the healer's art.
To the wounded and the weary
I would show a gentle heart.
I would be my brother's keeper-
Lord, I would follow thee.

I really tried hard, and I don’t regret a single shred of the effort put forth, but I’m afraid I only addressed the problems I could see. In the 3rd verse it says, “In the quiet heart is hidden sorrow that the eye can't see.” Now I understand this so much better! There is so much unseen sorrow, and such a need for compassion. Will I get a chance to be at full-strength again now that I’ve learned this? Lord, I WOULD follow Thee.

The Great Neutralizer

About 4-5 times per week, I am completely overpowered by fatigue. It is usually in the afternoon, and rarely lasts longer than an hour. It is hard to describe the feeling. It isn’t sleepiness. In fact I count it a blessing if I can doze off. Rather, it is a deep muscle fatigue like nothing I’ve ever experienced. OK, I’m not writing this to garner sympathy, just to try to explain what it is like. During these spells, walking is out of the question. Once I started eating a tortilla when I was feeling this way and it wasn’t worth it. Chewing and swallowing required too much effort. I spit it out. Lying on the couch doesn’t feel low enough. If Kara was counting on me to make dinner or something, I just can’t. And, at the moment, I don’t care. I don’t have the energy to care. That is the real telling thing: complete ambivalence. When I regain strength, I try to make up for the down period, but I can’t really. The worst part? Feelings of guilt and inadequacy. I know I shouldn’t feel that way, I didn’t choose this illness, but bottom line is that I’m not helping and I can’t help but feel bad about it.

However, the other day I realized that it is the great neutralizer. When I’m really wiped out, I’m not trying to talk, walk, or read, so those things don’t bother me then! Isn’t that great? iT is like when at Curch, if I could read the Hymns (or sing), I might get frustrated at my page-turning difficulty. Sometimes symptoms cancel each other out.

Vision or Voice

About a month ago, my teenaged son asked me if I could have one of my MS symptoms reversed, what would it be? I answered immediately: vision. I have tiny blind spots right smack dab in the center of my field of vision, making it hard to see detail, almost impossible to read from paper, and I have almost given up driving. Not being able to see detail also affects my handwriting, I can’t read music, and I have mistaken others for my own children more times than I care to admit. My own children! Sometimes I find myself thinking “Man, this really stinks!” as if I am surprised that failing vision would be hard. Duh!

Anyway, a month later and I have reconsidered. Over that time my voice has become much more compromised. It ranges from strained and “mumbly” to barely audible. I cannot sing, and I have a hard time annunciating as it seems that the nerves around my mouth and throat just aren’t working right. I have realized that vision is mostly an “intake” function and voice is more of an “outflow” ability, and I think I would rather talk than see. If my voice returns, I could sing to my children, teach them in greater detail, to say nothing of giving talks and lessons at church. Vision is more about me. Voice is more about them.

I feel that this trial is teaching me so much, but is it just for me? I guess I can still keyboard. That is an outlet, right?

Bedtime songs

Today I read my sister-in-law Rachel's blog entry about singing to her children each night. I love that she does this, and that sometimes Stephen joins in. I love that I did this too for my kids, and I find myself emotionally caught between sadness that I can no longer sing to my children and gratitude that MS didn't steal my voice until my youngest was eight. I think she was about done with bedtime songs anyway; isn't that a convenient time to lose your voice? But I know at nine, she would still enjoy it. She wasn't done yet.

Her favorite for years was Edelweiss, and I used to add an extra chorus, with custom lyrics. Where the song goes, "Blossoms of snow…" I would sing something like, "Daddy loves Missy Kay and my boy; Mandy Cole and my Natty Joy." I had dozens of versions, but they always included all the children, and always rhymed. Saturday night as I was tucking Natalie in, I was a bit wistful about not being able to sing. But I could whisper! I leaned in close to her and whispered, "Daddy loves Amanda and Eri K., Ryan David and Natty J." She smiled and said, "I remember those!" I have to remind myself that just because I can't sing, doesn't mean I can't touch their hearts. The gratitude vs. sorrow scale just tipped to the good side.