Sunday, April 3, 2011

The Work and the Glory

After a particularly hard day Jo Anne sat down with me and said, "Jack, we really ought to write a book about our experiences together since your accident." She went on to say, "If we do write such a book I have the perfect title. We will call it "The Work and the Glory!" I looked at her in amazement and responded, "That is truly a wonderful title, but quite a famous author has pretty well used up that particular title." She looked me in the eyes and said, "I know that, but it would still be the perfect title for our book, because for some reason I seem to do all the work and you manage to get all the glory!" Well, it certainly is true about Jo Anne doing all the work but I'm not sure about the glory part of the proposed title.
My mother passed away a few years ago while living with one of my brothers in South Jordan, Utah. The funeral was held in Salt Lake City. Jo Anne and I drove to Provo with our daughter, Jolene, and her youngest child at the time, Tanner. We stayed with Jo Anne's sister, Judy, at her home in the Provo area. The night before the funeral my two older brothers came to visit. About the time Jo Anne was putting me down for the night I said to her in their presence, "Now you know the funeral begins at 10 AM in Salt Lake City and then we are going to have to drive directly to Ely, Nevada for the burial the next day (Ely is 250 miles from Salt Lake City). So do you think you can get me up in the morning, get me dressed and into the wheelchair, feed me some breakfast, load the van and the car top and get us to the funeral by 10 AM and then drive us to Ely after the funeral service?" Jo Anne looked at me without blinking her eyes or grimacing too badly and said, "No problem!" My two brothers looked at each other and one of them said, "Boy, that's what I call a good marriage!"
About now you are probably thinking, "Jack, what do you contribute to this marriage?" That is a very good and legitimate question and the answer is very simple, "Not much!" Really, the only thing I can contribute is to be cheerful, express gratitude for all that is done for me, complement Jo Anne on how nice she looks and how wonderful the outfits are that she puts on me each morning. I also try to be very open and honest in my communication with her and have learned the truthfulness of the significant statement, "Openness brings closeness!"
As Jo Anne takes care of me, makes sure the grass, flowers, and shrubbery are carefully and beautifully maintained, makes sure home repairs are done correctly and by competent individuals (I never did deserve being numbered as part of this elite group), keeping the house spotless, the van serviced properly, battling insurance and medical supply companies, and cooking wonderful meals, and a multitude of other things, what do I do? Good question!
I thought some of you might be interested in a typical day in the life of this quadriplegic on life support. I think it might help you better understand why Jo Anne's proposed title for our book is so apropos.
My day typically begins at about 5 AM each morning. I do however struggle for a few weeks adjusting to daylight savings time each year. When I wake up it is dark but I usually can't sleep anymore at that time of day. I lay there for a few minutes and try to go back to sleep, but once I finally realize that sleep has escaped me for the night, I begin what I call my morning devotional. I begin singing in my mind my favorite hymns. I have approximately 20 that I enjoy singing. I generally sing 10 to 15 of them each morning after I wake up. I will share with you some that I sing. I always start off with "Oh How Lovely Was the Morning" – all four verses. Next I sing "Praise to the Man," followed by "I Stand All Amazed." And then I sing the following: "Have I Done Any Good in the World Today," "Put Your Shoulder to the Wheel," "There Is Sunshine in My Soul Today," (I especially love the verse – "there is music in my soul today, a Carol to my King, and Jesus listening can hear the songs I cannot sing) "High on a Mountaintop," Redeemer of Israel," "Hope of Israel," "Let Us All Press On," "Ere You Left Your Room This Morning," "I Need Thee Every Hour," "Oh My Father," "We Thank Thee Oh God for a Prophet ," and I won't bore you with any more. I always end by singing "How Firm a Foundation." I especially love the third verse, "Fear not, Jack, I am with thee, oh be not dismayed, for I am thy God and will still give thee aid. I'll strengthen thee, bless thee and cause thee to stand [I especially like that phrase] upheld by my righteous omnipotent hand, upheld by my righteous omnipotent hand!"
By the end of my hymn singing I am feeling very happy and peaceful inside and am prepared to offer my morning prayer. I am in no hurry and enjoy this part of my morning devotional the best. If I know I have overslept I will eliminate the hymn singing but never the prayer. I simply could not make it without the prayer. The third part of my devotional is to meditate or ponder. I prepare lessons and talks in my mind, receive ideas for observations I would like to write and have had some very special experiences during that pondering time. I can never go to the computer saying to myself that I am now going to write an observation. I will think for several weeks about an experience or an idea I think might be worth writing about and when I finally go to the computer it generally flows for me, although at times it ends up going a completely different direction once I start writing.
About 7 AM my son-in-law, Nathan Brown, (I really like this boy) comes into my bedroom on his way to work, gives me a drink of water, does some other things to make me more comfortable, and then puts my earphones on me so that I can listen to a book on tape. Because my eyesight has gone south on me making it impossible for me to read the printed page any longer, and because I don't have the use of my limbs I qualify to be a member of the braille Institute who through the Los Angeles County public library system supplies me with a special tape recorder and a wide variety of books I can request to read. I always have on my shelf 9 or 10 books I can hardly wait to listen to.
Between 8 and 8:30 AM my caregiver comes to start getting me ready for the day. He performs some necessary procedures on me, washes my face, shaves me, brushes my teeth, and exercises my body, stretching my limbs to keep my muscles from atrophying and my limbs from becoming frozen in place and distorted. About this time he calls for Jo Anne to come down to make the most important decision of the day. My caregiver and I would not dare to choose the outfit for the day. To do so would be way beyond our intelligence and abilities. Jo Anne selects the outfit and she and my caregiver get me completely dressed. The caregiver, a wonderful man from the Philippines, does all of the tugging and pulling and finally I am hooked up to the hydraulic patient lifter, transported from the bed to the wheelchair which is always an adventure because I am without air during the transfer, and I truly do love to breath. Jo Anne reluctantly lets my caregiver comb my hair. It has taken many years for her to delegate that awesome responsibility to anyone but herself. Finally my caregiver feeds me some yogurt with fruit in it, gives me some water to wash down a variety of pills (I am one of the great "pillars" in the Church) and then I am ready for the day.
I roll out of my bedroom across the dining room and into my office. Either Jo Anne or my caregiver sets me up on my computer, positions my microphone headset properly, boots up the computer and I am finally ready to go to work.
I am usually on the computer by 10 AM and study the Scriptures, prepare lessons, write observations, research on the web, read and send e-mails, and thoroughly enjoy what I am able to do. My voice recognition software is incredibly good and I can accomplish by voice what normal able-bodied people can do with their hands and fingers. I work until about 12:30 PM when I take a 10 minute break, drink some tomato juice to wash down another series of pills, maybe eat a handful of nuts and then get back on the computer. Between 2 and 3 PM Jo Anne takes me out in the van to run errands and to go to lunch. Our errands generally consist of returning purchased items to the major mercantile establishments in the greater Orange County Area. I can generally persuade her to get lunch before 3 PM. We go to Taco Bell, subway, Baja fresh, Café Rio on Taco Tuesday where we get a good deal on their wonderful tacos, Saturday afternoon we have a tradition of going to "In N Out Burger" which to me is always the highlight of our gourmet dining during the week. Sometimes Jo Anne talks me into going to a healthy organic pizza place. I really don't enjoy it and prefer the greasy, cheesy pizzas at Pizza Hut. I know my lunch diet is not really good for me but I don't care. I remember Tommy Lasorda, the former Hall of Fame manager of the Dodgers, was talked into going on a diet one time. He finally gave it up and said "I did lose lots of weight and was looking good, but the thought came to me that all the misery I was going through would culminate at my viewing before my burial where people would come by and say,' My, doesn't he look great' ! I just decided the misery wasn't worth it."
On a typical day we will be home before 5 PM and I will spend a couple of more hours on the computer. I'm usually in my bedroom by 6:30 PM watching the news on TV. We eat dinner between 7 PM and 8 PM most days. My caregiver comes at 8 PM to put me down for the night. I am in bed on my left side so I can watch the TV by 8:30 PM. I will be watching the Lakers or the Dodgers or BYU sports in season or a Turner classic movie. I have sworn off network TV not finding anything virtuous, lovely, praiseworthy, or of good report in most of the programming. Jo Anne and Nathan come in about 11 PM, reposition the bed, get me on my back, give me another bunch of pills with a big drink of water and I am ready for a good night's sleep until 5 AM in the morning.
We also try to go to the Temple once each week, an occasional movie if we can find one worth watching, out to dinner with friends, and we love Sundays being with our good friends, teaching gospel doctrine, and usually giving a patriarchal blessing or doing some home teaching Sunday afternoons. We especially enjoy visiting with our children and grandchildren who fortunately live within an hour of our home.
Now, I'm afraid I have painted such a rosy picture of the life of a quadriplegic on life support that some of you may feel cheated that you haven't been blessed with this great opportunity. I must admit it has a downside as well however, which I won't dwell on and really never think much about.
A while back in our Gospel doctrine class we were discussing the Savior and Peter walking on the water during the storm on the Sea of Galilee. I once heard a minister on a radio program saying that he thought Peter was like a cheap suit. Every time the going got tough he folded. On the Sea of Galilee he sank like a rock and that night in Caiaphas' Palace he denied knowing Jesus. I beg to differ with him. How many of us have ever walked on water? Peter was a man of great faith but it was not fully developed yet. He was momentarily distracted and became very self-conscious I believe when he realized he was actually walking on water. The moment he lost his focus on the Savior his walking on the water was over. Matthew recorded the following: "But when he [Peter] saw the wind boisterous, he was afraid; and beginning to sink, he cried, saying, Lord, save me. And immediately Jesus stretched forth his hand, and caught him…"[Matthew 14:30-31]
I am convinced that Peter, though his faith faltered in that instance and he was afraid he, never lost faith in Christ. And as he was sinking to his death he cried out, "Lord, save me," and Jesus stretched forth his hand and saved him.
I can identify with Peter. For the better part of 21 years now I have felt I have been "rolling" on water. The burden of paralysis has been made light and because of the Savior and his great , the fix out one thing out of the bottle, neither just one chapter love I have been strengthened spiritually so I have been able to lift up the burden of paralysis with ease and submit cheerfully and with patience to all the will of the Lord. [Mosiah 24:15]
However, there are those moments when I lose focus like Peter did and reflect on what I am doing and what I have been doing for the last 21 years and I begin to sink like a rock and feel for just a second or two that what I have done and am doing, and what Jo Anne has done and said is doing is absolutely impossible. In those rare moments, like Peter, I cry out, "Lord save me," and he does and will continue to do so I believe, as long as I do my part.
And the truth of the matter is that Jo Anne is both "The Work and the Glory," and to me "A Marvelous Work and a Wonder!"


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Shauna said...

Dear Jack,
Thank you for this post! I have recently become paralized...not in body, but in mind...I am now an empty-nester, so I lost my full-time job of being a mother, I also, at the same time, moved to a new city and lost my part-time job of working at Seagull Book, and now, because of all of the above, I feel as if I have lost my sense of purpose...I feel paralized in my mind wondering "now what?!" I was working at the bookstore when your book first came out. I read it with great awe and immediately looked up your blog. You are a great inspiration to me of "continuing on in faith." Ever since I read your book I have wondered what you do all day...For me that is my biggest challenge....what do I do ALL day? I don't have kids to take care of, I don't have a job to go to, what do I do? I was so excited to read about day (and YES, I too think your wife is wonderful!) Thank you for sharing your thoughts...I especailly like that you start the day singing the hymns...I think I will start doing that...Lest you think I am slothful...I will report that I try to keep myself busy with taking care of my wonderfully supportive husband, doing family history work, crocheting blankets to donate somewhere, visiting the widows in our neightborhood, and last month I started back in school...Please know that you have touched my heart and I think of you often. Please keep writing for it helps to motivate me....Thank you! Shauna Wheelwright

ionamin-W8FW8 said...

Dear Jack,
It was very interesting to read this post, especially about your daily routine. As the caregiver to my C-2 daughter, I could relate to many things. the Lord truly does lighten our burdens so that they don't seem like burdens. We just need to go to Him in faith. You know I always hoped to be a "white haired temple worker" some day. I AM white haired, but because of my situation, probably won't be able to be a temple worker.However the Lord helped me to see that I've been called to be Heather's caregiver, a calling most people wouldn't or couldn't accept. God is good! Thanks for your observations, they are inspiring! Diane J.