Stabilizing the Family Mobile

Originally published in The CFIDS Chronicle, Fall 1995

Family therapists have likened the family to a mobile whose various parts form a delicately balanced piece of art. When the winds of stress or illness blow against the mobile, the individual pieces flail about, hitting each other and destroying the sensitive balance. For the past seven years CFIDS has blown a fierce wind across our family mobile. Our daughter, Alisa, and I both have CFIDS, which invaded our bodies within a two-month period seven years ago. Alisa was nine years old at the time. The first months were very difficult. I was 80 percent debilitated, and Alisa could attend school only a few hours a week. Those were the months of endless tests and doctors visits, of tormenting questions and few answers. Those were the months when we slowly realized the power of the invader that had hijacked our bodies and our lives. While Alisa and I carry CFIDS in our bodies, our other two family members—my husband, Bas, and our son, Matt—"carry" the illness in other ways. During those initial months, Bas said to me, "Lynn, this illness has the power to destroy us—our marriage, our family, our faith. You have always been the emotional hub of this family, keeping us motivated, encouraging us, helping us stay strong. I will need to take on much of that responsibility in the coming months and years, but you need to do one thing: stay on top of this thing emotionally and spiritually. I will do whatever it takes to help you do that. If you go under, we won't make it." Those were not demanding words; they were words of direction and commitment. Bas saw what I was unable to see at the time. CFIDS not only threatened our physical health, it also threatened our relational, emotional and spiritual health. It threatened our family and our marriage. What can we do to stabilize the family mobile during the CFIDS storm? 

Grieve and Accept the Losses
Families lose a lot when CFIDS strikes one or more of its members. We lose our ability to do the normal things together. For the past seven years I could not be the parent I wanted to be, attending Matt's concerts, speech meets or school activities. We could no longer take family canoeing or biking trips—I could barely make our meals. We grieved as we watched Alisa lose seven critical developmental years. She has not been able to participate in the normal groups, activities or events that would help her identify who she is. In interviewing PWCs and their families for my book, Finding Strength in Weakness: Help and Hope for Families Battling Chronic Fatigue Syndrome, I spoke with several men whose CFIDS prevented them from working to support their families. One of them, Jim, said, "While it's been hard for me to endure the physical pain and limitations for the eleven years I've had CFIDS, the hardest thing by far has been accepting the fact that I can't work to provide for my wife and five children. I had always seen myself as the provider and protector of our family. CFIDS has robbed me of that ability. My wife has gone to work full time and I receive disability income, but it hurts to see the toll that it takes on my wife to keep the seven of us going. She has done a remarkable job, but I would give anything to be able to work."

Redefine Family Life
Life doesn't end when CFIDS strikes, but it must change. Jim has had to reevaluate and redefine his role and responsibility in his family. In the past few years one of his daughters has been diagnosed with lupus, and one of his sons has developed heart disease. While Jim can't earn money to help with the medical bills, he is available to help his kids work through their questions and fears as they face the implications of their life-changing illnesses. As you redefine how your family will function while coping with CFIDS, focus on the important things in your family life—the relationships. Compensate for your losses by doing things in different ways. When Sharon's CFIDS bound her to her recliner in the living room, her family ate the evening meal picnic-style on beach towels spread out on the carpet. There they could spend time together, rehearsing their day's activities, their concerns and their victories.

Love in Deeper Ways
Even under the best of circumstances, maintaining a strong family requires work and sacrifice. But when one or more of your family members is debilitated, the work and sacrifice take on new dimensions. When Janet's 24-year-old daughter, Dana, was struck with CFIDS while working in Africa, Janet and her husband welcomed their daughter back into their home. They went from emptynesters to total caregivers in a month. "Dana was so incredibly sick the first two years that we didn't know if she would make it. We had to do everything for her. After four years of living with us and gaining strength, she was able to move out and begin a part-time degree program." Laura, who has had CFIDS for only a year, says, "When David and I married five years ago, I knew he loved me. But my illness has repeatedly tested that love. I went from being an energetic, mountain-climbing companion to needing a wheelchair whenever we go out. I went from being our family's hospitality giver and social organizer to a person who needs help getting dressed in the morning. Through it all, David faithfully cares for me and helps me maintain perspective. Even when I am bedridden and unable to do anything for him, he lets me know that I am valuable to him just because I am.

Commit to Hang on During the Crises
Life with CFIDS is always difficult, but sometimes those difficulties rise to crisis proportion. Whenever I feel that our family mobile is about to collapse, I think of my friend Cyndi. Crises happen nearly every week—sometimes every day—in their household: Cyndi and all five of her children have CFIDS. Over the past nine years they have had more than 50 hospitalizations. Cyndi's question when she wakes up in the morning is not "What will I do today?" but "Which sick kid will need my priority energy today?" Husband Steve's questions about his kids are not "Will my son's team win the baseball game today?" but "Will my son be able to attend school this week?" Despite their hospitalizations, financial stresses and daily discouragements, Cyndi and Steve's family has decided to hang on—to each other, to hope and to God—no matter what it takes. They have decided that their family is immeasurably important. They have committed themselves to each other, and it shows. One of the kids said, "Without my parents and my brothers and sisters, I would never be able to make it through CFIDS. They rub my back when I am in unbearable pain. They make me laugh when I am depressed. They lie on my bed and listen to music with me when I am too sick to move. They are my best friends."

Draw on Spiritual Resources
CFIDS often requires from us strength that we don't have. I will be the first to say that our family and our marriage would not have lasted these seven years with CFIDS without God's sustaining grace. Bas doesn't have within himself the ability to love and care for Alisa and me so selflessly. He and I do not have within us the strength to parent an adolescent with CFIDS. In all of our questions and pressures and discouragement, we cling to the only hope we know: God is good, and He is in control. He has given us the strength to walk this far through the valley. Even when the nights have been long and frightening, we know He has never left us. When I ask Cyndi how she manages with five CFIDS children and with worsening symptoms in her own body, she says, "If I didn't know that God holds us in his hand and that he knows the end of the story, I couldn't face another day." As CFIDS continues to batter your family, do what you can to stabilize your family mobile.