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Coping With Chronic Illness
By
Susan Hines-Brigger
Source:
Every Day Catholic
Published:
Monday, July 11, 2011
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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.
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.”
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