Below is a piece I wrote in December 2002 that I wanted to share again… I hope you like it!
Even So, It Is Well With My Soul: One Woman’s Journey
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well with my soul. (Spafford)
It all started one day at work. Typing had been difficult for several days with the room so dark, but suddenly parts of words were disappearing. Some of the letters just weren’t there. Reading was impossible. The ophthalmologist took one look at her and told her to go to a medical doctor. The medical doctor said, “You need to see a neurologist.” The first available appointment was three weeks away. Between the appointments, she began to feel a tingling sensation in her feet. By the time she got an appointment with the neurologist, her right eye had become totally blind, and the tingling numbness had climbed all the way to her neck. To aid her in diagnosing the problem, the neurologist recommended a spinal tap, a procedure in which a hollow needle is inserted between vertebrae of the spine in order to withdraw cerebrospinal fluid (“Spinal Puncture”). Finally, the neurologist came to her with a solemn face.
“We don’t usually diagnose this early,” the neurologist told her, “but I just want you to know what you are facing.” I have a brain tumor, she thought worriedly, but the neurologist continued. “You have Multiple Sclerosis.” Well, that doesn’t sound too bad, she sighed to herself with relief.
Once she knew that death from the condition was not imminent, she asked the neurologist what the normal lifespan for an MS sufferer was. Looking back on that moment, she remembers, “They said ‘50 or 55 years,’ and at that point I was 24. That sounded like a pretty long lifetime…. Fifty-five sounded pretty old.” My mother, Deborah Hanks, is now 49 years old and has lived with Multiple Sclerosis for 25 years. Though she was optimistic about her condition, MS is not an illness to be taken lightly, a clear fact, considering the technical description and definition of the disease.
Multiple Sclerosis is a
chronic, slowly progressive autoimmune disease in which the body’s immune system attacks the protective myelin sheaths that surround the nerve cells of the brain and spinal cord (a process called demyelination), resulting in damaged areas that are unable to transmit nerve impulses. The disease also gradually damages the nerves themselves. (“Multiple Sclerosis”)
MS, which is believed to be caused by a virus, affects every system of the body and, even today, is incurable. The blindness and tingling are common symptoms of an MS exacerbation, or attack. The National Institute of Neurological Disorders and Stroke explains that in an MS attack, areas of the central nervous system become enflamed, leading to the destruction of myelin that facilitates high-speed connections between nerve cells. As the myelin is destroyed, messages that are conveyed between nerves slow or can even be blocked completely, resulting in diminished or lost function (“Multiple Sclerosis: Hope”). Such intense and intimidating words would have frightened anyone into anger, depression, bitterness, or even denial, but my mother accepted the disease gracefully and hopefully.
She stayed in the hospital for eight days after that first attack, receiving the steroid ACTH (adrenocorticotropic hormone) intravenously. At that time, steroids were used to slow down the progression of the disease. Today, steroids are rarely used in mild cases of MS because the body quickly becomes immune to their effects. Steroid medication is usually reserved for extremely progressive cases of MS.
Six weeks after diagnosis, her eyesight had returned, the numbness had receded back to her feet, and, for my mother, life returned to normal. But for others in the family, nothing would ever be “normal” again.
The realization that their daughter had a potentially debilitating illness terrified my grandparents. Even though my mother had been married and out of the house for nearly two years, the sudden change was still hard to accept. Because my mother wanted desperately to have children and my father was not ready, my grandfather rejected the diagnosis of MS, insisting that my mother was simply having a nervous breakdown, something he said was nothing that having a few children wouldn’t fix. My grandmother, on the other hand, was supportive, though at times understandably upset and confused.
Meanwhile, my mother’s friends responded to the illness the same way my mother did. She took the symptoms and the disease lightly, almost nonchalantly, knowing that it was now part of her life, and her friends followed her example. Over the first few years, people showered her with resources about the disorder. One person even related a radical treatment for MS that included keeping bees in a jar and provoking them to sting your arms eight times each day. Research on the effectiveness of honeybee venom on MS patients continues today. Another treatment was featured on an episode of Sixty Minutes. On the show, experts instructed MS sufferers to have their fillings removed as the metal can sometimes trigger an exacerbation or make them occur more frequently.
Despite all the advice she was given, the only aid she enlisted was that from an MS diet book. In the book, the authors, Swank and Pullen, note “a possible correlation between high-fat intake and a high frequency of multiple sclerosis” (vii). Their advice: “[a] change of life style from a diet of high-fat foods to one with low saturated fats and an increase in polyunsaturated oils is strongly recommended” (3). It made sense to change the way she ate, so for six moths or more, she stayed on the low fat diet recommended by the book. After a while, though, “it got old,” so she stopped following the diet, reasoning that since she had managed to have a healthy baby and felt reasonably well, there was no need to continue it. After going back to normal eating habits, she saw no change in her health and decided, for better or worse, to remain eating as healthily as she could without being forced to a by-the-book plan.
Her friends were always helpful and informative, sharing information they had read or heard, giving her advice about how to eat, and putting her in contact with other friends and relatives with MS, but neither they nor her parents ever pitied her or grieved. My mother would not allow it. She was determined not to allow the disease to change her. But she was not as strong as she thought she could be.
Shaking her head slightly, she remembers, “There was one night… that I had a real ‘tear attack’. [Finally, I said,] ‘Lord, if this is what you have for me, just keep me well until I raise my children.’ …I had no children at the time, but that was my heart.” Then she had another exacerbation, or “problem” as she calls them. Suddenly, she had no control over her balance, turning everyday activities into exhausting struggles. After another eight days in the hospital and more steroids, a doctor recommended that since extreme hormonal highs and lows tend to make attacks more frequent, she should not have children. There was also the concern of passing the virus on to the next generation. Shrugging her shoulders, my mother says, “I guess he considered having children something that wasn’t necessary. But that’s because he didn’t know me.”
“How will not having children affect your marriage?” the doctor asked. My mother replied that she didn’t think it would change anything, since she and my father were already having some problems. She was certain that when he realized that she might be crippled, he would just leave. When he came home that night and they talked, she was surprised to hear him say that he had no intention of leaving. “I’m sorry this happened,” he said, “but it doesn’t change anything; it’s not a problem. You’re not in this alone; we’re in this together.” From then on, their marriage made a turn for the better.
In 1979, my mother gave birth to her first child, a healthy girl named Caryn, my older sister. Just over a year later, she had another attack; the numbness rose from her feet up her legs, extending all the way to the waist, and her balance control disappeared again. She explains, “my legs didn’t function; I had trouble walking.” Through it all, my mother maintains that she was never afraid. It felt like it was just “a little thing…. I kept thinking, it went away before; it’ll go away again.” Fortunately, it did. After ten days of taking steroid pills, the numbness receded, and she regained her balance.
Since the third major attack, the progression of the disease has been slow and basically mild. As with any illness, though, there are long-term effects, and as she approaches the age her doctors once told her could be “the end”, my mother knows that her level of health could change quickly, since age, even without the influence of a disease such as MS, can be debilitating.
I am paying more attention to how I feel. And I get confused over whether my problems are the oncoming age, or if it’s maybe the slow progression of MS affecting my body. I fall more. I drop things more. I have trouble lifting my feet up steps, and I notice carrying things that I have no strength anymore. I can’t open jars. When you’re almost 50 years old, it’s very hard because you’re thinking “is it MS? Is it old age?”
The questions become even more complicated when the hours of work she puts in are factored in to the equation. After not working for 19 years while raising my sisters and me, she has reentered the work force, putting in nearly 40 hours each week, which could easily contribute to the tiredness, weakness, and feelings of fatigue. To be certain that the pain she felt was not MS, she once again saw a doctor. He recommended a CAT scan to verify that she truly had Multiple Sclerosis, since years ago, when they had tentatively diagnosed her, there had been no way to know for certain. With modern medical innovation, the CAT scan revealed that the nerve damage was, in fact, MS, though that knowledge changed little about her treatment. Doctors diagnosed that her most recent pain is arthritis, which is unrelated to her disease. To my mother, the small pains are simply an everyday reminder of God’s grace.
Today, my mother’s multiple sclerosis symptoms are limited to the tingling in her feet which has remained since the first exacerbation in 1978, as well as diminished fine motor skills, particularly in her hands and fingers.
You know what you want the pencil to do and you can think what you want it to do, but you can’t get you hands to do it. Almost like when your hands are really cold. They just won’t do it…. When I’m writing [a letter], I will myself to write in my best handwriting…. It doesn’t matter how slowly [I work or] how long I concentrate; I cannot form the letters nicely anymore.
Despite the setbacks and the possibility of another, more serious attack, she remains at peace. The future is not frightening to her at all. “When I think about it, I don’t get scared because I know I’ll be with the Lord. And so I don’t say ‘Don’t do this to me, Lord.’ I say, ‘Hey, it’s Your will, Father. If you want me home, I’m coming.’”
Having multiple sclerosis has been more than just a discomfort or a problem for my mother. It is what brought her back to God. “I was a ‘good person’,” she explains. “It was almost disgusting how ‘good’ [I was]. But I wasn’t living for Him.” It was that one night just after she was diagnosed that she “fell apart” before God, and said “‘Lord, I know I have walked so far from You.’ And I knew what I needed to do; I just needed to give Him everything. That’s when I said, ‘This life is no longer mine; it’s Yours.’” To this day, she maintains this attitude of surrender. “Even when I’ve fallen, and I’m not having a good day, I don’t go to bed without saying, ‘Thank you, Lord, for the day and for getting me through one more.’ [Having MS] has changed me in that way. My life is totally His.”
In discussions about the illness with my mother, some people speak of being inflicted with a disease such as MS as if it were a “cross to bear.” Others wonder if God sometimes judges sinners through disease in the same way the disciples assumed of the blind man in John 9. My mother, however, sees her illness differently. “Sometimes you get sick, and you say ‘Okay, Lord, I hear you.’ It’s like [getting hit by] a two-by-four. [MS] was my two-by-four.”
Throughout her life, in the midst of all the struggles and trials of dealing with both the symptoms and the emotional weight of having Multiple Sclerosis, my mother manages to remain unquestionably faithful to God. Her favorite Bible passage, Proverbs 3:5-6, always reminds her how to be strong: “Trust in the Lord with all your heart and lean not on your own understanding. In all your ways, acknowledge Him, and He will direct your path.” Speaking of these most treasured verses, she says,
When I don’t know which way I’m going, or I’m trying to figure out what the Lord is doing in my life, …I can say ‘Okay, trust in the Lord; lean on Him.’ Those are the times when I can come to the end and say, ‘…I’m not worrying about it. Lord, You’re in control; just keep telling me what to do.’ And that [gets] me through.
As Horatio Spafford, author of “It is Well With My Soul,” learned from the tragedies of his financial ruin in the Chicago fire of 1871 and the deaths of all four of his daughters in a shipwreck shortly after, no grief or pain or great heartbreak can ever outweigh the eternal hope that all believers have in the Lord. Through MS, my mother has learned how to say, “It is well with my soul.”
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
It is well with my soul.
It is well with my soul.
It is well, it is well with my soul. (Spafford)
RESOURCES
The Bible. New International Version.
“Multiple Sclerosis.” Encyclopedia.com. 4 Nov. 2002. http://www.encyclopedia.com/html/m1/multiscl.asp.
“Multiple Sclerosis: Hope Through Research.” National Institute of Neurological Disorders and
Stroke. 4 Nov. 2002. http://www.ninds.nih.gov/health_and_medical/pubs/multiple_sclerosis.htm.
Spafford, Horatio Gates. “It Is Well With My Soul.” The Bread Site. 4 Nov. 2002. http://www.breadsite.org/hymns/Itiswell.htm.
“Spinal Puncture.” Encyclopedia.com. 4 Nov. 2002. http://www.encyclopedia.com/html/s1/spinalpu.asp.
Swank, Roy L. and Mary-Helen Pullen. The Multiple Sclerosis Diet Book. New York:
Doubleday, 1977.
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Please support me and my team as we ride to raise money to find a cure for MS, a disease which not only effects my mother, as you have read, but also my sister Caryn, who was diagnosed in 2006.
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