By Darla Isackson
It is late afternoon and I’m still in my pajamas, sitting up in bed, grateful to finally have enough energy to type on my laptop. What keeps me down is not the common cold or flue, but chronic illness. Staying down today will hopefully make possible a few good productive hours tomorrow.
Chronic fatigue, lupus, fibromyalgia, Epstein Barr virus–you name it, a lot of us have it! As we move further into the twenty-first century, chronic illness seems to be epidemic. Unlike “curable” short-term illnesses, many of these conditions don’t go away. Family and friends try to be kind and understanding, but they keep thinking we should “get over it” -and we don’t.
Author and counselor Kathleen Lewis said, “‘Illness’ in the world of the healthy may conjure up thoughts of acute problems with a duration of a few days. . . [or at most weeks or months] with medications that give quick answers or easy solutions. Illness for the incurably, chronically ill means a lifetime of days upon days filled with ongoing, fluctuating health problems that have no easy solutions or quick answers. For the healthy, there may be the concept that you either get well or you die. Surely there’s a pill for every ache and a cure for every problem?! There’s no real understanding of getting sick, staying sick, and never really feeling well” (Successful Living with Chronic Illness, p. 4).
Using Will Power in the Right Way
Few other situations in my life have brought me so clearly to the point of knowing that my will power cannot always change things, that my desires cannot always turn things around, that part of life is to accept “What Is.” A few years ago I bought my husband a little plaque that reads “Do not mourn what cannot be; celebrate what is.” I’ve been working hard to live that lesson!
I am one of many who live with illnesses that cannot be eradicated, only managed. The only way to manage mine is to use my will power to quit when I need to quit, to give myself the rest and sleep I require (even though I’m always tempted to question why I should need so much when other people seem to get by with so little). If I do what I need to do to take care of myself instead of resisting what is necessary, I can still live a full, rich, happy life.
Lessons in My Lifelong Quest for Health
Of necessity I became very health minded more than thirty years ago when chronic problems–stemming from a serious burn, high fever, and massive doses of antibiotics when I was a toddler–became serious enough to threaten my life. Only a commitment to exercise, eat only nutritious food, and be open to every possible health modality has kept me going most of the time since then. But I’m always stalked with the knowledge that I can’t “get away” with anything. One day of not eating right or pushing too hard, one night of insufficient sleep and I’m down.
However, I have come to realize that my attitude toward my illness and limitations can drain my energies more than the illness! Kathleen Lewis, who became a medical and psychological expert on chronic illness when her life was changed by lupus said, “The emotional response to chronic illness can be more crippling than the illness itself” (ibid, p. xii). For me, the crippling stressor is inappropriate guilt over the fact that I can’t do more than I can do! No matter how great my efforts to be healthy, I often feel I’m “on the bottom of the heap” because I can’t begin to keep up with others. My illness makes it imperative to conquer this compulsion to compare. I also have to put the lie to my codependent notions and realize that the goal to “keep everyone happy or pleased with me” would be unrealistic and impossible to achieve even if I had the energy to work hard at it 24/7.
When I’m still tempted to measure my worth by my ability to perform (or the number of hours I can keep going), I remember that infants, the aged, the injured, the handicapped do not lose one iota of their worth because they can’t “accomplish.” I can contribute the same valuable things any one of them does, even when I can’t do a thing. Each individual all of who they are to those around them, no matter what they can or cannot do.
In the process of learning this lesson I hope to get closer to qualifying for the kingdom. Jesus said, “Except ye be converted and become as little children, ye shall not enter the kingdom of heaven” (Matthew 18:3). What character traits do children have that Jesus considers vital to enter the kingdom? Humility, teachableness, forgiveness, eagerness to learn, faith, living in the moment without regret for yesterday or fear for tomorrow, submissiveness. I grab onto the lifeline that any spiritual growth that reweaves these qualities into my character matters more than accomplishment.
Finding Strength in Weakness
I think the kind of submissiveness, the surrender the Lord wants from me in this situation is submission to His will–to give up wanting what cannot be. But why can’t it be? Because I have the body and the genes that I have. And because every cell in my body somehow reflects all the choices and responses and experiences of my long life. Because of all those factors I simply cannot be any other place with my health than where I am. But couldn’t God intercede in my behalf? Couldn’t he heal me of all infirmity, make me well and whole?
I have to consider that this trial may be precisely what I need. No matter how hard I may beg, much like a petulant child might coax to be allowed out of bed when he’s still sick, God won’t say “yes” unless it is for my best good-and he usually won’t rescue me from the consequences of my own choices. I ask for healing blessings and am given, instead, the blessing of enough strength to do the most important things in spite of my limitations. I learn that I must rely on Him daily for my strength. The Lord does not care about my comfort as much as He cares about my spiritual growth. He alone knows what is best to encourage that growth. I can trust His wisdom and goodness in my behalf. 2 Nephi 26:24 tells me that “He doeth not anything save it be for the benefit of the world.”
Perhaps I am given this “thorn in my flesh” so that I may learn what the Lord told Paul when he “besought the Lord thrice, that it might depart from me” that “My grace is sufficient for thee: for my strength is made perfect in weakness” (2 Cor. 12:7, 9).
Ether 12:27 reminds me that “I give unto men weakness that they may be humble.” What if the Lord knows that all the stamina and energy I so desire would lead to my destruction through pride? I must trust that after I have done all I can do, and my weakness persists, that it is for my own good.
I may never understand until the next life, but I know He understands, and that has to be enough.
My Body Is My Own Stewardship-Nobody Else’s
In the meantime, doing all I can do means taking good care of myself daily. Kathleen Lewis said, “Ultimately, you alone are responsible for taking care of yourself physically, emotionally, mentally, and spiritually. No one can do it for you. Others can only give encouragement and offer advice, be guides and supports. You need to do the real work yourself . . . you need to take care of yourself first before you can take care of anyone else. Any other commitments need to come second or you will shortchange all involved” (Ibid, p. 12). The last time I was on an airplane, I thought about that principle when the stewardess told us that in event of an emergency we should put on our own oxygen masks before we try to help others. Like most people with chronic illness. I’ve had to do a complete switch-around in my thinking in that regard. I had to experience being no good to anyone else for a while to learn that it is not selfish to take care of myself first. (Of course there are exceptions, and the Spirit is an always-reliable guide.)
Mostly, what I need to do is simply to care for body in the same dedicated way I cared for my infants. Why did I miss the fact for so long that I have the same stewardship with my own body as I had for theirs? My body can’t take care of itself any more than my helpless baby could. I need to learn to be as solicitous of myself as I was to them. When I was taking care of my baby, if he was hungry, I never said, “No way, kid, am I going to stop what I am doing and feed you. You can wait.” When he needed a nap, I didn’t say, “Sorry. You can’t rest. There is just too much to be done.” When he needed exercise and was kicking his little arms and legs to beat the band, I never said, “Quit that. Hold still. Use that energy to do important things.” When he was giggly and playful, I never said, “Quit fooling around. You have work to do.” When he was feverish and sick, I never once said, “I know you don’t feel good, but too bad. I’m not going to care for you, I’m not going to cuddle you, I’m not going to give you what you need. I’m just too busy.” Yet I’ve often said all those things to myself.
Just as I was super concerned about the physical needs of each of my babies, I should gently and conscientiously care for my own body. It is not anyone else’s job and I don’t need anyone else’s permission to do it. I can wish that those around me understood what I need to do in order to take good care of myself, but if they don’t, that’s all right.
My Spirit Needs Care Too!
The same principle applies to caring for my spiritual and emotional self. I will be no good to anyone else if I do not do what I need to do in order to maintain a measure of spiritual and emotional intactness. My spirit needs to be nurtured daily just as my body does. I must place very high on my priority list the things that edify and feed my spirit. I suspect spiritual starvation is the most widespread disease.
To keep my spirit emotionally healthy I need to stay in touch with my child self. Sometimes I hear my child self inside me begging to “come out”–to paint or play the piano, or play in the snow or lie on the lawn and watch the clouds. How many times I’ve told her to “go to her room” because I had far too much to do to bother with her needs. How much healthier I feel when I let her out to play for a few minutes and celebrate some of life’s beauties with her. My grandchildren often help me to do this!
Making Rest Holy
My hardest challenge seems to be my attitude about resting and sleeping. As a child, I always thought sleep was an absolute waste of time. As an adult I have considered the need to rest a nuisance. I saw the ability to rise early and keep going for long hours as a badge of righteousness. If I didn’t (or couldn’t!) do it, I felt like a slacker. Only if I was really sick (flue-cold kind of sick) could I give myself permission to rest. Consequently, I’ve never been able to go very long without getting really sick!
The old saying “a stitch in time saves nine” applies here. An hour of timely rest might save me from being stuck with the nine hours of downtime required if I push to the limit and compromise my immune system. In the scriptures “rest” always has a wonderfully positive connotation (i.e. “Come unto me, all ye that labour and are heavy laden, and I will give you rest” (Matt. 11:28). I’m finally learning to see rest as a peaceful place, a calm interlude, a healing, rejuvenating necessity.
Author Maureen Pratt, who has lupus, goes one step further and tells us that rest should be considered holy. She says, “Any chronic illness means you have to listen to your body. That means being truly restful . . . In Genesis, God provides a great example of rest: Not only did he take a day off after creating the world, he also “made it holy” When you think of rest as truly holy you make it matter. A day of downtime isn’t ‘slacking off. It’s a way of acknowledging that you take your body, your illness, and yourself seriously. You’re paying attention. How wonderful that God gave us his example of resting on the seventh day, that we might see that, just as work is important, so too is truly holy rest (Guideposts, Nov 2005, p. 60).
Psalms 37:7 says, “Rest in the Lord, and wait patiently for him.” I haven’t been very good at the waiting bit, or the patience, but I’m learning that both are part of the process of spiritual growth. Isaiah 40:31 tells us, “They that wait upon the Lord, shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” How long must I wait? Only the Lord knows. Perhaps until the resurrection! However, if I wait patiently, resting “in the Lord” and not chafing at each new limitation, the promise is sure.
Gifts and Silver Linings
My sister Arlene said something electrifying when I complained to her that I had had only three functional hours that day. “You never know,” she said. “Those three hours could be of great value to someone else.” Later that day I had a phone conversation with my 98-year-old friend Vera who can’t see or walk. I hung up feeling so grateful that I could still do so much! I concluded that I need to stop whining about my limitations and rejoice in the fact that I still do have functional hours, that I still do have choices, I still can make contributions that might mean something to someone else.
When I focus on what I can do, rather than what I can’t do, life looks so much brighter.
It occurred to me that sparsity of functional hours had increased both my recognition of the importance of my choices and my motivation to get the Lord’s direction for the use of those hours. When I know I only have a few hours worth of energy today I’m not nearly as likely to fritter away my time or get caught up in the thick of thin things. I want to use those hours for things of eternal significance! I want to nurture relationships, serve, give what only I can give, and write what only I can write. I literally have no time for excesses or distractions or detours.
In that way my illness has been a blessing. In many ways, really. I have often used down time to talk on the phone with friends or family members who needed comfort and a listening ear. I have read scriptures and Ensigns and other good books when I didn’t feel well enough to be up and about. When I haven’t had the strength to hold a book, I’ve listened to marvelous inspirational and conference talks, books on tape, etc. I’ve received inspiration and answers when lying still, being quiet, and pondering. If I had been filled with vibrant energy all the time, I suspect I would have deprived myself of these blessings.
I’ve spent many down times learning to pray with more focus and intensity, pleading with the Lord to know His will and for the strength to do it. I have been brought to the point of humble surrender when I’ve done all I can do and no solutions have been forthcoming. I’ve had to lay my life before the Lord and say, “You know what you want me to do, and you know what my mission is. Please give me the strength and direction to do it. If it is Thy will for this condition to continue, if there are still lessons for me to learn, help me accept my illness and do the best I can with it.”
In many ways chronic illness has provided grains of discomfort that have evolved into pearls of faith and spiritual lessons learned, closeness to the Lord gained. Maureen Pratt said, “I believe God is always with me. And you. And everyone. And he is closest to me when I am deepest in my pain. For it is in our pain that God’s embrace is fullest. My faith has been increased by my illness, not diminished. I have greater appreciation of the world and all its glorious gifts. Yes, lupus changed my life; and in a strange and beautiful way, I’m grateful” (Guideposts, Nov 2005, p. 61).
Has my illness changed my life? Undoubtedly. The 23rd Psalm summarizes what it has done for me. It has literally made me to “lie down in green pastures.” Many times my soul as well as my body has been restored by the enforced rest. I have been led to still waters when I have been still. The times I’ve walked in the valley of death, I have felt the Lord with me; His rod and His staff comforted me. He has fed my soul by preparing a table before me in the presence of my inner enemies and my illness, which I’ve often perceived as “the enemy.” My cup has run over with blessings that I’ve been able to share with others. The Lord’s goodness and mercy has followed me all the days of my life-even when I didn’t recognize it at the time. I believe that goodness and mercy will continue to follow me as I seek to follow Him.