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Coping With Chronic Illness—A Daily Walk With God
By: Susan Hines-Brigger
When you first walk into our home, it appears to be the normal household of a family with four kids?book bags in the corner, toys on the floor, dishes in the sink.
But if you look more closely, you’ll see a deeper story. On the refrigerator, peeking out from under the kids’ artwork and sports schedules is my shot chart. Behind the butter on the top shelf of the refrigerator sits my medicine. And on top of a cabinet, next to my cake decorating supplies, is the disposal container for the needles I use for my daily injections.
Welcome to life with a chronic illness. I have multiple sclerosis, an autoimmune disorder that affects the central nervous system. I was diagnosed about nine years ago, shortly after the birth of our son, the second of our four children.
First, I lost the hearing in my right ear. Then one side of my face went numb. My vision and balance have been affected, and a few years ago I temporarily lost all feeling in my right leg. I battle overwhelming fatigue and the fear of this disease’s unpredictability on a daily basis.
Yet, in spite of all that, life goes on. It has to. There are clothes to be washed, homework to be done, birthday parties to be planned and sick kids to care for.
I try hard to keep a positive attitude and realize things could be so much worse. Really, I do. But I’m finding it’s a day-by-day process. One day I feel as if I can conquer the world and take on anything this disease throws at me. The next day I get mad because it’s not fair; scared that I won’t be able to chase my kids around; worried that I’ll have to move because I live in a two-story house; and totally bummed because I see the way my kids look at me now and I know they’re worried.
Recently, I started taking daily injections to try to slow the progression of the disease. I’m very aware, though, that they can only do so much. As the doctor reminded me at my last appointment, “Any damage that is done is done.” No one knows when MS will rear its ugly head again or in what way. The questions are unlimited and overwhelming. The answers are few and far between.
That’s where faith comes into the picture: faith that there is a reason I am on this journey, and faith that I will be given the strength and surrounded with the right people to help me through.
Sharing the burden
When I was first diagnosed with MS, I felt very isolated. No one I knew had MS. I knew very little about the disease and I didn’t feel comfortable calling my doctor’s office every time I had a question. Being fiercely independent, I vowed to take this on myself. I didn’t want to burden others, nor did I want to be labeled a chronic complainer. Other people have their own problems, they don’t need to hear about mine, I would tell myself. So I tried to go it alone.
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Every day—sometimes multiple times—I would recite the Serenity Prayer: “God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference” (Reinhold Niebuhr). But I never found serenity.
I scanned the Bible for passages to bring me comfort. While many resonated with my plight, I wasn’t finding the comfort I thought I would.
That is, until the day I stumbled across Romans and began to read: “For as in one body we have many members, and not all the members have the same function, so we, who are many, are one body in Christ, and individually we are members one of another” (12:4-5). Suddenly, it hit me: What I was missing in my search for comfort was community, a key part of my Catholic faith.
We are many parts
So, as many of us do these days, I took to my Facebook page. I began to share my struggle. Before long, an old friend from high school wrote back. She, too, has MS. Within months, another high school friend was diagnosed. A mom at my kids’ school doesn’t have MS, but also faces a chronic illness. She wrote to let me know she “gets it.” A fellow parishioner, who has MS, offered her prayers, support and a listening ear.
We pray for each other, holding each other up when we are weak. And though we come from various faith backgrounds, we are a community—formed person by person, story by story. I have come to realize that my friends and family are the living manifestation of the words of St. Teresa of Avila: “Christ has no body on earth but yours, no hands but yours, no feet but yours. Yours are the eyes through which Christ’s compassion for the world is to look out; yours are the feet with which He is to go about doing good; and yours are the hands with which He is to bless us now.”
The community of our faith provides a wonderful example and network of support during times of need. I was reminded of this again recently when the mother of one of my daughter’s classmates died suddenly. The parish rallied around the family, offering help in any way they could. For some that meant making meals, while others physically wrapped their arms around the family. Still others simply offered prayers.
I have also experienced those blessings as I deal with my MS. Those moments when I feel my lowest are always when I am reminded—in some way—of Christ’s presence. Sometimes it’s a kind word from a friend, an unexpected visit or just a momentary sense of calm. Faith is my security blanket. It gives me something to hold on to when I’m angry, frustrated or sad. My faith tells me, “Don’t give up. Hang in there. There is hope.”
Imprimatur was granted for this article, “Coping With Chronic Illness—A Daily Walk With God,” by Susan Hines-Brigger, from the Most Reverend Joseph R. Binzer, Bishop-Elect and Vicar General, Archdiocese of Cincinnati, 3-08-2011.
Susan Hines-Brigger is a wife and mom of four great kids. As if that doesn’t keep her busy enough, she is also the assistant managing editor of St. Anthony Messenger and managing editor of Catholic Update.
By: Frank Frost
At one point in The Diving Bell and the Butterfly, the main character feels bereft when the joyful echoes of his visiting children have faded from his hospital room. He remonstrates with himself, “I am pitying myself, no?” He has come a long way since the occasion, months before, when he had “blinked” his first words to his translator: “I want to die.”
■ What is your experience with chronic pain or illness—your own or that of another?
■ Does suffering lead you toward or away from God? How might one’s anger with God be converted to leaning on God in times of difficulty?
■ What will you do to lessen the burden of another’s chronic pain or illness?
Diving Bell is based on the autobiography of Jean-Dominique Bauby (Mathieu Amalric), editor of the French fashion magazine Elle, who is on top of the world when struck down by a stroke. He awakes from a coma to find himself trapped incommunicado inside his body. The only muscles he controls are those of his left eye. His mental faculties are untouched. Bauby’s matter-of-fact physician explains that he suffers from “locked-in syndrome.”
Fortunately, his physical therapist (Marie-Josee Croze) invents a method whereby he can blink once for “yes” and twice for “no.” She patiently recites the alphabet until he blinks, then she transcribes the letter he has chosen. Blink by blink, he manages to write a book about his experience.
We see the world as he sees, remembers and imagines it. We hear his unspoken thoughts. “I decided to stop pitying myself,” he says. “Other than my eye, two things aren't paralyzed: my imagination and my memory.”
Bauby, known as Jean-Do (think John Doe) to his friends, is an “everyman.” This story of extreme chronic illness is an antidote for depression and a call to the hidden hero(ine) in each of us.
Next time you watch The Diving Bell and the Butterfly, ASK YOURSELF:
By: Joan McKamey
“God is good!” aren’t words we’d expect from a woman with chronic illness. Yet that’s how Maureen Pratt began her interview with Every Day Catholic. She says, “We must take our lives on faith. Much is out of our control and requires courage we don’t know we have.
■ Pierre Roussin and Jean-Do’s aged father each feels he has a special reason to empathize with being locked-in. Roussin’s advice: “Don’t let go of what makes you human.” Does Jean-Do follow that advice?
■ Does this movie leave me more empathetic to those who suffer chronic illness? Less inclined to self-pity?
“I’ve been seriously ill since birth. Before I turned 18, I’d had 13 bouts of pneumonia. I now think I’ve had lupus all along. My whole body would crash and then I’d get better. I also have hypothyroidism. It causes shaking fits and lethargy.
“As a child, I spent long hours alone in my room. My mother told me God is always with me. She encouraged me to talk to God. That opened up my prayer life.
“I couldn’t do many things other kids did, but I could do music and theater. That sparked an interest in things creative. I also have an affinity for language. I was a French major at Georgetown and started a master’s of fine arts at UCLA. I wrote plays and did some acting.
“I was working long hours and traveling a lot when my health finally gave out. I was sitting at my computer, twirling my hair, when a chunk of it came out.” For a year, Maureen pursued a diagnosis. Her doctors claimed her problem was stress. She says, “I started to lose coordination in my hands. I’d spike fevers in the afternoons. I had dry eyes and rashes. I was bone-numbingly tired and grew weaker.” A rheumatologist eventually told her, “Lupus is trying to kill you. If you don’t address it, it will.” She adds, “My heart, central nervous system and blood were involved. I started losing my hearing. I still don’t have hair.”
Maureen quit working, yet she remains active in her parish and uses her experience and talents to help others living with chronic illness. She says, “Maybe the reason God gave me a burden of communicating is to encourage others.” Her “Living Well” column is distributed through Catholic News Service. She offers workshops on spirituality and living with chronic pain and illness. She’s been featured on television and radio. She’s written four books, the most recent being Beyond Pain: Job, Jesus and Joy (Twenty-Third Publications). Yet, she admits, “There are days when, if I get dressed, take my medications and look at the plants on my balcony, I’ve accomplished a lot.
“It’s been a journey of surprise, blessing, difficulties and pain. Other lupus patients are tremendously supportive. I encourage others to learn they’re not alone with a diagnosis or challenge. Being involved with a faith community is also important.
“It’s easy to feel like a victim. But we can’t have any semblance of quality of life, respect for ourselves or be productive if we think this way. We must move beyond ‘Let this cup pass from me’ to get to ‘Not my will but thy will be done.’
“People living with any illness must nurture a sense of humor. When the hospital gown gapes open, we can laugh or cry. It’s a decision we make.”
By: Jeanne Hunt
John and Carina had a great marriage and a wonderful future. Then the floor dropped out from under them when Carina became a paraplegic following a car accident. In the beginning, it was manageable. But now, 10 years later, John is overwhelmed with her care and his own anger about the situation they are now forced to cope with daily.
John’s guilt over his feelings is just as strong as his desire for them to share the life they'd envisioned. Lying awake in the middle of the night, he wonders how long he can keep bearing up as Carina’s caregiver and husband.
The chronic illness or debilitation of a spouse can be devastating. Dealing with it can be frustrating and brings stress to both partners. All too often, the healthy partner feels isolated and totally responsible for care.
It’s important to establish a support system of friends and relatives. Even though you may be handling things at this time, begin to enlist the help of family and friends who may assist with the care of your partner or with doctor’s appointments, or just to be there for moral support. You may even want to consider hiring a part-time caregiver to allow you to be free of the 24/7/365 schedule.
An important time-management issue is finding time away from your spouse. In every marriage, it’s important to have time to do things apart from one another. This is especially true as the partner of a chronically ill spouse. Taking time to play sports, attend seminars, be with friends or even see a counselor will make all the difference in your attitude when you are housebound with your partner.
Finally, realize that you cannot do everything. Your spouse still may be able to perform some tasks. Let him or her know that you have needs and expectations. There will be compromise as you make some tasks easier. In the end, both of you will have a sense of accomplishment that is rewarding.
John joined a support group of spouses with similar situations at a nearby hospital. Almost immediately, the dark cloud lifted from his spirit. They encouraged him to get help and take time out for himself. He and Carina are even learning how to have a date night, wheelchair and all. But most of all, the John is learning to invite God into his marriage. When John is at his weakest, God seems to hold up both him and Carina.
By: Jeanne Hunt
(for praying alone or with others)
Preparation: Place a basket with small pieces of fabric fringe (find this at a fabric store), a Bible and a lighted candle on a prayer table.
“Shepherd Me, O God” (or similar hymn)
Good and gentle Shepherd, I am the weakest in the flock. Pick me up and carry me for a while. Just being near you, hearing the beat of your heart, is enough. Amen.
“[God] will feed his flock like a shepherd; he will gather the lambs in his arms, and carry them in his bosom.”
Come, your Shepherd is waiting to carry you. (Pause)
Open your hands upon your lap. Imagine that the Good Shepherd is with you. This is not a time to speak.
In the silence, hear the divine heartbeat. Just as the Shepherd carries the smallest lamb, he now lifts you up and carries you.
We will pass a basket with pieces of fringe, much like that on a shepherd’s cloak. Take one and keep it near you to beckon and hold the Shepherd at your side whenever you are weak.
Let us pray the prayer that Jesus, our Good Shepherd, taught us: Our Father….