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My Experience

I can remember as a kid thinking that adults had everything all figured out, knew all the answers. I know now all too well that “old” people really don’t have it all down pat. In fact, we still learn every day. As you will see while I talk about my experience with MS, the times when we don’t have it figured out and buck against it can become quite selfish and sinful periods in our lives.

Twelve and a half years ago, I developed a numb left arm and the left side of my face was also numb. I had an MRI to rule out a stroke. MS was a passing thought for the doctor, but not anything more than that. At that time, my daughter Leanna was a small baby, so the numbness was attributed to carrying her in the same arm all the time, and the spots they saw in my brain were attributed to the migraines which I had infrequently. Through the years symptoms and explanations came and went—that numb elbow must have been a pinched nerve from diving in volleyball, or from getting hit with a line drive in church league softball, I must have been tired because I was an active mom, my muscles were sore from yard work, I couldn’t see well because I needed to change my contacts—there were any number of reasons to explain away weird symptoms. One whole summer I had an electric shock like sensation in my spine each time I looked straight down. Looking back I don’t know why I didn’t ask about that, except that I was a busy mom and didn’t have time to complain. I know now that this symptom is called Lhermitte’s Sign and is a signal that a spinal lesion is forming—I didn’t know it then. During the summer of 2009, my symptoms became radically worse. My left arm and shoulder became very heavy, felt as though they were filled with pudding instead of blood. I lost much of my arm strength; it became difficult to even hold a capful of detergent while doing laundry. My fingers were numb. I knew something was exceedingly wrong, as I am in touch with my arms and fingers because of my privilege of playing for many different choirs and for church. Things were not working correctly. I then began what I can only call a four month battle to be seen and diagnosed. Over a period of several months, I was sent to physical therapy, then to a hand doctor, and then referred to a neurologist. I have come to find out that neurologists are busy people, and are generally not moved by urgent cries for help. In the course of the summer of 2009, I called the neuro office multiple times, had my hand doctor send repeated referrals, called them more, but to no avail. My feeling that something was extremely wrong was validated that summer when one day I shut the Suburban door, then walked away and found I was caught by my fingers in the door, but didn’t even realize it because there was no feeling! I was finally seen in mid-September at which time the neurologist immediately ordered an MRI to rule out brain tumors/abscesses or disk issues in my spine, but fully suspected that I had MS.

There are times in the life of every person that are just simply etched on the brain. Exact weather, clothes you or others around you were wearing, smells, impressions…September 24, 2009, is one such day for me. If I allow myself to really reflect on this day, my usual reaction is to get a lump in my throat. D-day—my diagnosis day—the day my world shook. God works things in his own perfect way—looking back, I see this work even on D-day. I was at work at Heritage Christian School that Thursday morning. The call from the neurologist office came in at 10:38 AM. “You must come in this afternoon, and you must bring someone with you to the appointment.” My initial reaction was fear. I was scared. However, being a bit of a matter of fact person, I knew that the next moment in my work day was playing for choir, beginning at 10:45. Heading that way down the hall and into the choir room I was in a bit of a daze still and remained somewhat scattered—until I heard the name of the song we were going to practice—“It is Well With My Soul.” What amazing grace God shows to us in such seemingly insignificant ways. The words of that song soothed me to some degree that morning as I waited for the unknown, as did the noon time devotions when choir was finished. Jim and I drove to the doctor that afternoon; she is a short little Asian lady. At that time yet there was a bit of a language barrier, but we clearly understood the words “multiple sclerosis.” There was no missing that! Unexplainable and also memorable at that moment was the fact that I was almost relieved to finally have a diagnosis of what was wrong with me, but yet the fear of the unknown remained.

In a split second, I went from living the seemingly trivial life of a busy wife and mom to being a person that was in a lifelong battle against an incurable disease that I knew nothing about. Medical procedures and appointments were thrown at me, and I went along with them—spinal tap, 5 days of IV steroids, tubes and tubes of blood drawn for blood work, vitamin supplements and injections, and the vision test. Suddenly I had to pick a medication—I had to give myself shots—this was an overwhelming thing. The day before I had been “healthy,” now I had to decide what shot to give to myself for the rest of my life?? I had four choices—all with different side effects. The DMD I chose is called Copaxone—I love it now; didn’t then! Copaxone is referred to as a “rodeo clown”; when I give myself the daily shot, it zips around my central nervous system and distracts the T-cells from attacking my myelin, inviting them to attack the Copaxone instead! It is a wondrous thing! As is health insurance! I am most thankful still for our health insurance premiums, which I used to grumble about—they now pay over $75 for each shot I give myself! So many little inconveniences in life turn out to be such blessings. I see that now. I didn’t all the time at diagnosis time. I still have MRIs once each year to monitor how my DMD is working. Spots that show up as bright white on an MRI are damaged or dying tissue. I have CDs of my MRIs, and I have white areas—in fact there are some big ones. But as of right now, I am not developing new lesions. In fact, I am told, much to my family’s amazement and delight, that my brain is stable! As for my left hand, the damage is permanent it seems. All the fingertips are numb, as is the entire thumb and index finger. But again, God has in his grace sent ways for me to compensate for that loss. I am still able to play the organ and piano proficiently most of the time. I am most thankful for this.

Now it is easier to see the blessings that MS has brought to me and even to deal humorously with it at times. At first it wasn’t so easy. Now I can identify the various emotional phases I went through. Then I had no idea. My doctor told me that it would be a good idea to keep a journal to track any triggers for flares and to keep my life on an even keel. I do this still today. Looking back at the initial entries, I labeled this stage of my life my SMLAD stage: a confusing and frightening combination of sad, mad, and glad. First, I was sad, mostly about the effect on my kids. Astoundingly heartbreaking to me was my youngest son’s recurring question in those first few months, looking at me with his huge eyes and asking quietly and fearfully over and over and over again—“Are you going to die today?” or “Is today the day, mom?” At first I didn’t understand exactly what he was getting at, in fact it took a week or two for me to realize that to him the word incurable meant fatal, and he thought he would lose me at any time. How do you explain the unexplainable to a little child? We shared countless hugs and tears. To my daughter came nearly instant acceptance and faith that Mom would be fine—she had to mature much too soon in that respect and became almost resigned in a way, yet she always believed in “good old mom.” To the other two sons—life did a flip. They morphed into protect-mom mode; in fact, they still bristle when I am too busy. It was backwards—sons worrying about Mom—not the normal order of things. My husband also promised to be right there with me, but he didn’t fully understand what we faced yet either. Throughout this early time, I remained somewhat trustful of God, but the battle with fear and doubt also loomed large at times.

Today, I am not proud of the sad stage; I don’t like to remember this “weak” time in my life. The next stage is even more horrible. I exited the sad stage and moved on to mad. The wait was too long. Much too long. In fact my doctor one day asked me why I waited so long to call her, said that had I called sooner I wouldn’t have as much permanent damage! That was akin to a physical blow. I vividly remember the utter shock, hurt, and anger in my mind upon hearing that question. Even now, but especially then, the reminder was always there—an arm that didn’t work right, a hand that no longer played the piano like it used to. I knew nothing, didn’t understand my doctor’s accent, was having tests and getting steroids, and I didn’t really even know why at that time. There was an astonishing lack of knowledge. Compounding the doubts and fears and anger was the fact that after diagnosis there was no sunshine for nine days…I know…I counted. I was smad—sad and mad. Here is a journal entry from that awful time: The thing about being sick with an incurable disease is the thoughts that go along with it. And they have been demon thoughts in me at times. I struggle to accept God’s will. It’s not there right now. It seems so unfair. Incurable. Unknown. Flare up. Steroids. Multiple sclerosis. Words I hate. So I drag myself out of bed, walk to the bathroom, get dressed, look outside. It’s dark, dreary, and gray again. I go down stairs to do devotions. First phrase I see: “The peace of God which passeth all understanding…”—it’s not there today. It’s hard to pray this morning… God’s plan is random it seems. Why did I have to wait four months to see a doctor and so lose some of the use of my hand? Why did he pick me, my family—why not someone stronger? This is not a time in my life that I look back on and nod, thinking I did pretty well. I didn’t. Sure, there were moments in the smad time that I was strong, was trusting; however the sad and mad won much of the time.

But, God is good. And I moved from smad to glad. Everything makes perfect sense to him. It took almost two weeks after diagnosis for me to fully, consciously, firmly remember that. I have a quote on my refrigerator. It kind of jumped out at me often in those weeks. It’s a good one: “God is not a deceiver, that he should offer to support us, and then, when we lean upon him, should slip away from us” (Augustine). And providentially, Rev. Lanning was up to the sermon on the providence of God in the Catechism, Lord’s Day 10. I wasn’t in church the night he preached the sermon, due to a painful side effect from the spinal tap, but it was given to me to listen to—and it was an amazing sermon from my heavenly Father, right to me. And I listened. And let it whack me across the head, pulling me out of my selfish pity party. Here is a journal entry from a few nights after I heard that sermon: Music is an amazing thing. “It is Well” is on right now. Again, I have tears. More songs, all right to me, and all brought tears tonight. I feel like a basket case. But overall, my mind frame is so much better now. God knows what he is doing. He has me, my family, all those I love in the palm of his hand. And the “incurable” that looms so menacingly over me is also being researched continuously. Advances are being made. God gives grace. I will be sometimes weepy and sometimes fine for a while yet I think, but more fine than weepy. No matter what plans he has made, I will rejoice in his goodness and grace. I am in the perfect place that he planned for me and so I vow to serve him in all my life whatever happens. Little did I know what his plans were. Really, do we ever know, even begin to be able to imagine? God is good.

What blessings we have as Christians. What an amazing God we can lean on. You see the struggles I went through, the sins of worry and lack of faith? Yet there were specific verses that did and still do mean the world to me—Psalm 46:10: “Be still and know that I am God…” In my sad and mad section of smlad, I wasn’t still at all. I was frantically looking every which way but up most of the time, until I consciously sat quietly and rested in him and his care. And in the glad portion of smlad, I see that “He hath made everything beautiful in his time…” (Eccl. 3:11). Who would have ever thought that I would think my MS was beautiful? Not me. But God knows. And he gives grace. God is good—all the time. Do I still have pity party moments? Sure I do. Am I happy about that? No, I’m not. Do I want to be a stronger Christian, lean more on him, trust in him more fully? Yes. Am I learning and will I keep learning until the day I die to look UP, not sideways? I am and I will. Thank God for that.

What You Can Do

So now, we talk about what you can do. There are things you can do physically in the future, but also things emotionally that you as young people are able and must be willing to do. First, we talk about the physical. If you are a student who loves the scientific studies, who is interested in the human body and its workings, you should consider becoming a doctor or a nurse. Look at how long I had to wait to even see a neurologist! Medical professionals are needed. If the musings of your mind move you to want to know how the body works, how God created things so marvelously and then gave man the ability to find cures for various diseases, then I urge you to go to school to become a researcher. Advances are being made even now, obtained because of the studies of researchers. We need more of them!

There is another way that you can help those around you. This expands to all who are in the family of God. Kids around you even here at Heritage struggle with hard things—family trouble, a parent with cancer or another serious illness, losing a loved one—troubles are all around. You can help, can step outside of your comfort zone and extend support. At all times, we think we may know how to help, and we do the best we can most of the time. But, looking back at my lovely journal, I do have a few pointers from observations I made.

Given my penchant for naming things, I, for some reason in the weeks after diagnosis, named the different types of people who approached me in their own ways. There were four main groups of people, although not everyone fit neatly into one of the following categories. The first were theavoiders. The avoiders pretended that I didn’t exist; they were uncomfortable and didn’t know what to say. If by chance our eyes met, theirs would quickly avert down to the floor. That way they didn’t have to talk to me, because they really had no idea what to say. I have been an avoider at times in the past. I am going to try hard never to do that again. The encouragers were a lively group of people! The encouragers reassured me that life was great. I was the best possible person this disease could have happened to and life was just wonderful, according to them. While this was somewhat comforting, it was fairly disconcerting as well. I didn’t always think that MS was the best thing that could happen to me. There is a time to be an encourager, just not all the time. The third group of supporters was the mourners. The mourners looked appropriately sad, spoke in a low tone of voice, and often cried while expressing their sympathy that such an “awful” thing had happened to me. The mourners were most often comforted by me, in fact. This was not always a bad thing. Again, knowing that there are people empathizing is at times a very comforting knowledge. But my favorite group of supporters, and the group I want to be in the most often, was the listeners. The listeners asked how I was doing, and then actually waited for the answer instead of continuing on their way. They wanted to hear the answer, wanted to give the opportunity to talk things out. There were times when I didn’t want to talk—at those times I would say I was doing well and then move on to a different subject. But you see, the opportunity to support was openly offered, and this was often a huge comfort. There is opportunity for you to be a supporter all the time. And there are other “groups” that I didn’t get around to naming. But the most important word here is “support.” You can be a support to the classmate with troubles, in fact you must be. You are at an age yet where you are learning how to react, yet you are becoming discerning young adults, and you will grow in grace as you extend your Christian love to each other.

But that is not all there is. It is so easy, especially in this busy time of your life, to overlook the most powerful support that God gives to us. This gift is the blessing of prayer. We are all called to pray for one another, for our loved ones, for our classmates and their families, for God’s will to be done, for peace, for calm. The things we must pray for are endless; the blessings we receive from knowing that God answers our prayers in his own perfect way are abundant. It may feel a bit odd at your age, make you feel a bit vulnerable even, to tell another person that you are praying for them. But the knowledge of the prayers of others to a person who is struggling is a great comfort. By giving your support to one another, you grow as children of God—this is priceless. The gift of perception and empathy that you develop is vital as each of you grows and matures. You will be able to better serve one another here at Heritage Christian School when you support each other in these loving ways. As a result, you will live your life as he has called you to—by serving Christ’s children here on earth, you in turn serve him as his children.

Works Cited

Holland, Nancy J., T. J. Murray, and Stephen Charles Reingold. Multiple Sclerosis: a Guide for the Newly Diagnosed. New York, NY: Demos Medical Pub., 2007. Print.

Home: National MS Society. Web. Spring 2010. <http://www.nationalmssociety.org/>.

At Heritage Christian School of Hudsonville, Michigan, we have been privileged on one school day in each of the past two years to study various disabilities and conditions which affect many of God’s children. It is our hope that as the students move on in class levels from year to year, they will also continue to move on with their learning about various disabilities and illnesses. I have presented the disease Multiple Sclerosis to the 8th grade class for the past two years, concentrating not only on the process of the disease, but also on the emotional toll that MS and other serious illnesses can have on individuals and families. It is my hope that what I share about my experience and knowledge of MS will help the students in a small way as they mature emotionally as brothers and sisters in Christ. What follows is the Discovery Center of Heritage’s introduction and then my presentation in words, written in first person as if I were speaking here on paper:

Today we will be learning about serious illnesses or chronic conditions that can affect you or your family. It is difficult to deal with these conditions, especially if your friends don’t understand. Most kids are not intentionally being mean, they just don’t understand because of a lack of knowledge. They haven’t had the opportunity to learn about conditions that are very much part of everyday life for some people. These conditions are trials in the life of Christians. Some day God’s purpose for these trials will be made clear to us, but until then we must take comfort and joy in knowing that God is in control. Understanding the trials of our fellow Christians will help us serve Christ in the way of serving his children here on earth.

I will be explaining to you the disease Multiple Sclerosis, speaking first about the actual disease itself, including its symptoms, diagnosis process, and treatments. Then I will speak about my experience with the disease, both physically and mentally. Finally I will talk with you about how YOU can respond to someone with a serious illness and also to family members of someone who is struggling with a serious illness.

Disease Course

The most concise definition I can find for Multiple Sclerosis is as follows: MS is a chronic disease of the central nervous system, likely an auto immune disease. Breaking this definition down into pieces, it can be explained rather easily. The fact that it is a chronic disease means that there is (at this time) no cure for MS. Once people are diagnosed, they have the disease for the rest of their lives. MS is found in the central nervous system, which means it is in the brain, spinal cord, and optic nerves. The fact that MS is an auto immune disease means that a person’s own body is the actual attacker, seeing its central nervous system as a disease that needs to be gotten rid of.

In the central nervous system of a person who has MS, the nerves are affected. Nerves of a healthy person are covered with a fatty tissue called myelin. This myelin coats and protects the nerves like a blanket, allowing the electrical impulses sent from the central nervous system to a person’s body parts to travel freely and with lightning speed. But MS damages this coating, the myelin is eaten away, and the electrical impulses are interrupted and at times even disconnected completely. This damage to the myelin is called demyelination, a fancy word which describes the formation of scar tissue. Areas of scar tissue on the nerves of a person with MS are called lesions or plaques if the body is unable to “heal” the damage that has occurred. The scars formed are the source of the word sclerosis, which originates from a Latin term meaning scars. Persons suffering from MS will have many such scars in their central nervous system, and will at times go through periods (called relapses, flares or exacerbations) where they develop new lesions. They will also suffer from false flares (times when it seems a relapse is occurring, but it is actually a false alarm).

Research is being done on MS continually. Researchers have been able to define four different kinds of MS. The first kind, Relapsing Remitting MS, is the most common type. At any given time 55% of people who have MS have RRMS. A person suffering with RRMS has definite relapses, but then also periods of remission where their symptoms go away mostly or even completely. Secondary Progressive MS is the 2nd variety, affecting 30% of those who have MS at any given time. This type of MS is a progression from RRMS, characterized by the end of the remission periods that a person with RRMS had previously had and by the steady worsening of symptoms. At any given time, 10% of MS sufferers have Primary Progressive MS, a type of the disease where the person from diagnosis time on progresses steadily, and there are no relapses. The least common category of MS is Progressive Relapsing MS, suffered by 5% of those diagnosed at any given time. This type of MS is the most serious; the disease progresses steadily, and in addition to that, there is the development of many relapses and new symptoms.

Millions of dollars are spent researching MS and other serious diseases, yet numerous questions remain. One such area of MS research that still has unanswered questions is the cause of the disease. Research has narrowed down the cause of MS to an interaction of four factors: infectious diseases, the immune system, genetics, and the environment. All of these work together in some way, creating a “perfect storm” for a person to develop MS. Some viruses in the human body “look” like a nerve cell. The immune system develops T-cells to fight this initial infection. Those T-cells, by the amazing design of God, stay in a person’s body in order to fight off the virus, should it return. However, for some reason, they later “see” a nerve cell, and so fight what they mistake to be a virus. This is where a person’s immune system becomes a factor, attacking the outer sheath of the nerves, the myelin. Then besides this, the genetic factor comes into play—everyone has a “chance” of developing MS, and there are many different statistics regarding genetics. One such collection of data suggests that for an average person, there is a one in one-thousand chance of developing MS. If, however, a parent or sibling has MS, that chance becomes one in one-hundred. The last factor in the cause of this disease is environmental. The farther south or north of the equator a person lives, the greater their risk of developing MS. Deficiencies of Vitamin D, produced by exposure to sunlight, are startlingly common in MS sufferers, and therefore may be involved in MS. All four of these factors work together, and studies of those who have MS are always being done to determine more about how this actually happens.

The symptoms of MS are extremely vague and can easily be explained away by any number of things, making the diagnosis process exceptionally frustrating. Symptoms come and go, especially in the early stages of the disease. Some common symptoms are fatigue, depression, numbness, tingling, pain, dizziness, vision problems, heaviness in arms or legs – all things that occur to any given person at any given time. To further complicate diagnosis, the number of different symptoms from which a person with MS can suffer is greater than fifty, and most are invisible symptoms (often even thought to be a figment of a person’s imagination). In order to be diagnosed then, a person first has to find a doctor who will listen to him or her, given the vague symptoms that come and go randomly. This doctor, a neurologist, will do many exams and blood work and then will order an MRI to look for areas in the nervous system that are trying to heal. If these test results look suspicious for MS, a spinal tap will be ordered which looks for oligoclonal bands (antibodies in the fluid) and protein in the spinal fluid (a by-product of destroyed myelin). Finally a vision test called Visual Evoked Potential Testing is done to measure the brain’s response to changing images, in effect determining if there is optic nerve involvement.

Treatment for a person diagnosed with MS varies. Immediately in a flare, the person will often have three to five days of intravenous steroids administered to calm the inflamed nerves, hopefully stopping any damage that is occurring. A newly diagnosed person must choose from several medications called Disease Modifying Drugs (DMDs) to reduce the frequency of new lesions. Those diagnosed are encouraged to begin strength training and aerobic training to prevent muscle spasticity and osteoporosis (a side effect of the steroids). All people with MS are encouraged to take many vitamin supplements, especially vitamins D and B12. Life style changes are urged, changes such as avoiding extreme heat, tiredness, stress, and busyness as all these things often make MS symptoms worse.

We have a cute, old couple that lives next door to us. When I told them I had MS, the wife nearly collapsed. She instantly envisioned me in a wheel chair shortly and drooling soon after that (exaggerated imagination, but valid in her mind!). Thankfully, the prognosis for a person diagnosed with MS is no longer as grim as it was fifteen or more years ago. DMDs have greatly improved the statistics, have slowed the progression of the disease and have reduced relapses dramatically. Except in severe cases of MS, there is little effect anymore on a person’s life span. All this has been made possible by the research that has been and continues to be done for MS.

This is MS in a nut shell, drastically simplified. I have only scratched the surface of the vast amount of information on this disease. (To be continued.)

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