Stauros' Notebook
Stauros Notebook is a quarterly publication of Stauros USA
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Amy L. Florian
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Autumn, 2002
The Final Lesson Joni Woefel When I came out of anesthesia following surgery for Meniere's disease a number of years ago, the first thing I noticed was that my vision was severely distorted. Feeling like I'd been hit by a truck, I hesitantly whispered to a nurse, "I can't see..." As through a fog, I sensed alarm in my husband, the nurses and a stream of doctors coming in and out of my room. "We're walking the floor over you," my surgeon said. These words (though I didn't know it at the time) ushered in a pivotal point that would officially begin my evolution from being a caretaker for my family to becoming a care receiver. When I was finally able to return home, half my face was permanently paralyzed, appearing as if it were melted. Even though I couldn't see very well and could barely walk, I sensed our young sons' shock when they saw me. It didn't take a rocket scientist to know they were thinking, "Where is my mother?" Still, we all had a genuine, much-needed (albeit cautious) chuckle when the boys said I looked like The Joker from the movie, Batman. Through the years, there have been many disappointments for my family as I continued to decline, as well as many lessons learned and a lot of forgiveness. However, we have also gained much maturity and generosity, mastered much patience, and deepened a love that weathers very tough times. Many people have experienced this same transition and I asked some of my disabled friends about their journeys. My close friend, Ann, (who has lived with disabling chronic illnesses for over 20 years) poignantly describes the process from being a caretaker to becoming a care receiver, "The hardest part of being a care receiver for me is that I feel like a caged bird that wants to fly, spread her wings and experience so many things in life. I want to do for others and I become frustrated with my needing help, because I feel I was born to give help!" These words resonate with the perspective offered by Dr. Richard Johnson in his June 2002 Association for Lifelong Adult Ministry newsletter (ALAM), "Each of us needs a ministry all the days of our life, yet when we're sick it's more than hard to continue whatever ministry (love work) formerly filled us. When we're sick we feel that taking care of sickness is our only 'business.' Yet when we're sick, and especially when (if) our sickness becomes chronic, we require, perhaps more than ever, a sustaining ministry." Another close friend, Dayna, who also lives with disabilities, humorously writes of this care receiving business, "I thought as a care receiver, instead, I had to take charge of my care. Before I became ill, I was extremely active physically and my mind still functions with that same perpetual motion. I can sometimes get a little pushy when one of my sons helps me, as the To Do lists I make for my family grow until they say 'uncle!'" Two years into her illness, Dayna says, "I still don't know what the heck I am doing, but I trust that God will teach me." This tenuous learning process is also portrayed by a friend who has lived with disabilities for nearly fifteen years. He candidly states, "Because my symptoms are so up and down and my disease, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is such a misunderstood illness, it is as though no one (other than my wife) thinks I need any help. There are times when I wish someone would offer to help me, but the offers never come. I am not one to ask for help and the hardest thing to come to terms with as a care receiver is knowing how to ask for help." My friend makes an astute observation when he explains, "Do you remember when I said, 'Real men don't eat Quiche, so it stands to reason that real men don't get sick?' This societal mindset makes it especially hard for me to ask for help." Yet my friend is a Midi composer who has written numerous inspiring melodies. Through him, I have learned that there are many avenues to receiving care. Creating music fills that need in multi-dimensional ways for him. One of the most valuable things I have discovered in learning to be a care receiver is to accept it from my husband and sons in the capacity that they are able to give it, and to respect their limitations and boundaries. Emotionally, they might not like to have a long talk on how I'm feeling, but would rather mow the lawn, hoe the flower-bed or make dinner. Their commitment is there, in varied and unique responses that I have learned to read like second nature. When I see how overworked and stressed my husband gets working fulltime, going to college, studying, being there for our sons who are also in college, persevering as the wage earner, and still having to do grocery shopping and house cleaning, I realize not only what a toll and sacrifice caretaking is, but what tremendous unconditional dedication it springs from. It goes way beyond duty. Ann also writes about this in her life, "I have accepted the care I need and receive from my husband and loved ones. In doing so, I have seen the beautiful spiritual growth, maturity and blessings that they have received by being a caregiver to me. I have come to see the face of Christ in their faces." Dr. Johnson writes of the losses experienced by ill persons, "Our infirmity lets us feel the suffering caused by worldly brokenness in a more personal way than ever before. We feel the pain of the world and that pain becomes personally revelatory to us." For my friends and for me, on days when chronic illness brings weariness beyond words, blunted senses, inability to do for ourselves and clouded thought processes, we relate to the pain of the world only too well. It is not as if we become saints who offer up our woes for humanity (though that is often a prayerful aspect of it). Rather it is a deep understanding of what it is like to be in the trenches, and consequently we grow in authentic compassion. This is where we learn that beyond giving and receiving lies the gift of spiritual presence to a hurting world... and in that revelation comes the clarity of what is worthwhile in life. Even though struggles continue, we receive care and feel comforted and less alone by acknowledging each other's pain in genuine empathy and trust. Martin Luther King Jr. writes of Love, "Agape is an overflowing love which seeks nothing in return. Theologians would say that it is the love of God operating in the human heart." Ann writes, "Being chronically ill is a life-changing experience. It is a never-ending process of learning how to accept love and care from others and yet to somehow still keep my dignity and self-respect for my own unique abilities and the things that I alone can offer back. In the end, that is the final lesson of receiving care and giving care. You must just do it with love and because of love." As I reflect upon Ann's words, I understand what she means. To suffer is fierce. To release feelings of being a burden requires courage, discipline and strength of character. To channel and extend energy in gentleness with mature openness to whatever each day holds is never easy, but that is why love is powerful and why only love can save us. When I think of that terrible day when I came home from the hospital and saw the stunned, frightened look on my sons' faces, I can't help but smile - because what I remember is their endearing attempt at humor in their first tentative words, "You look like The Joker". And then I laugh because I realize how proud I am of my family and the odds we have overcome in learning to become true caretakers and care receivers.
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