I remember the exact moment I knew something was seriously wrong with my mother. We were kneeling down to pray one night with my brother, sister, and father, while my mom had been asleep for quite some time in the other room. I offered the prayer in a manner that most eight year olds do. “Thank you for this day. Thank you for my family. Thank you for our house. Thank you for my cat. Please bless us that we will be good, and please bless my mom’s back to get better.” I remember being stuck with the thought, “Why do we all pray for my mom’s back every single night? It doesn’t seem like her back is the whole problem. Is it? That doesn’t make sense.” That was the moment when I realized that there was a much bigger issue that I was in the dark about. We had been praying for my mom’s “back” for months and months; ever since the car accident that last summer in Southern California. Her back was injured, but being hit from behind also triggered something much worse; something that was never going to go away; something that would last a lifetime.
By the forth grade, I was well aware that my mom was not like other moms. The biggest difference was that my mom took naps- Long naps, everyday, pretty much religiously. We were always required to have a “quiet time” during my mom’s napping hour. My parents started to hire live in nanny’s who would prepare meals, do laundry, go to the store, take us to our lessons, and keep the house in order. I still had no idea why my mom couldn’t do these things on her own. But, for a long time, she didn’t know why either, so it made sense for her not to tell us. It was just easier to blame everything on a car accident.
When I needed new clothes, it was my grandma who took me shopping. When a school project came up, it was usually my grandma also who stepped in. I have all the memories most children have growing up in the United States. I went to the zoo; I went to amusement parks, water parks, church activities, sporting events, and always loved being in the mountains either skiing, camping, or hiking. Very, very few of these memories include my mother. She was somewhere else.
What did she do all day while I was at school or playing night games with the neighborhood kids? I remember her eyes were often red, face blotchy and puffy, and she spent the majority of her time alone behind her bedroom door with the lights off. In a weird way, she didn’t play a big role in my childhood, but in another way, she played the biggest role.
I have always had a creative mind. In this eight year old mind of mine, I had found my way of making sense of what was going on. I often thought to myself, “My mom likes to pretend she is sick all day so that she doesn’t have to cook or clean. She uses her health as an excuse because she doesn’t want to go to church or take care of grocery shopping. But really, what nobody knows, except me, is that my mom sneaks out when we are all asleep and she goes dancing.” I would imagine her out on the dance floor having the time of her life, while we were all tucked in our beds asleep. Not even my dad had a clue. I figured she would eventually tell us all the truth. The secret would be out, and then she would have to be a normal mother again like she used to be.
It is amazing to look back and think about how completely ignorant we all were to what my mom was going through, my dad included. Before my mother’s health took a dive, I would say we had the ideal family. We had the story book neighborhood. There were dozens of kids on our street and we knew every neighbor. We had two cabins, one up Little Cottonwood Canyon, and the other in Bear Lake, where our family and extended family shared in all kinds of adventure. I loved school. I was excelling at the piano and practiced close to an hour everyday. I had friends, a huge backyard, and we never seemed to have any major financial burdens. We were involved in our church, and on top of it all we felt a strong spirit of love and peace in our home. I knew my parents loved each other.
My mother’s disease that was eventually diagnosed as Multiple Sclerosis ripped into our family and tried to destroy us. The year my mom’s health was the worst, I was 10 years old. Looking back at my report card that year astounds me. I was close to failing out of the fourth grade. The years before the MS hit, I had never struggled in school. But all of a sudden that year I found myself unhappy. I was always getting into trouble by the teachers for being loud and obnoxious as well as disrespectful. I felt like the least popular girl in school. I wore braces, pink glasses, and without having the help of a mother in the morning, it was a rare thing if my hair was combed that day. I felt lonely and angry inside. The main reason my confidence and self worth were shaken that year was definitely linked to my mom’s physical weakness. But the much bigger issue at hand was that her disease seemed to be the root of why I felt our family was falling apart.
One evening my dad came home from work in his suit and tie. It was always a joyous moment when dad walked in the door. Daniel, Kate and I loved him dearly. This particular night, he had the most somber face; a look that I have never forgotten. He said, “Kids, can you gather around the table please? We need to talk.” My mom was standing there too. She hadn’t said a word. My dad said one line to us, and then the rest of the night is an awful blur. He spoke in a tone that was stone cold. “There is something I need to tell you. Your mother doesn’t love me anymore.” At that instant my mom burst into yelling and screaming attacking my dad of being unfair and cruel. I was dumbfounded. I did not have one clue that there was a serious problem between them. I don’t know where Dan and Kate went at that moment, but I ran to the top of the stairs leading up to the bedrooms. I sat and listened quietly down into the kitchen for the next hour hearing nothing but endless arguing. I mostly remember my mom’s voice. I declared in my mind, “If my mom and dad decide to get a divorce, without any doubt, I am going to live with my dad.”
Richard, my dad, was the fun one. He never got mad at me. He never made me do my homework. He never made me practice the piano. He never made me take a bath or clean up my room, nor do any of those other nagging things that “mom’s” bug their kids about. It makes sense that I would want to live with him right? Everything is good when daddy gets home. Plus, she is the one who is always complaining, criticizing, and nagging him. Ever since she got sick, she isn’t any fun. She is always depressed and moody. She is the problem. I took sides instantly. However, I remember my heart softening as soon as I heard my mom’s yelling turn to tears. And then she wept, and wept, and wept. I changed my mind. “If my parents get divorced,” I then decided, “I will stay by my mom’s side. I must be her strength. I won’t ever leave her. She needs me. She needs my help more than my dad does.” In the back of my mind, I still wanted to be with my dad. For some strange reason, kids always feel that they need to take sides. But, my loyalty was to my mom.
Those 6 months were perhaps the hardest months in my life, and I can not even imagine the difficulties my parents were facing. I will never know what it feels like to have Multiple Sclerosis. I will never understand the pain my mom felt inside while raising three young children and feeling a huge loss of control over her body. Nothing was going to be as it had before. That is a hard truth to accept. Folding laundry was too much. Going to the store was too much.
During this rough time in my life, a ray of sunshine did come through and that very same ray is still in my life. I found a new friend. Grace Rich moved to Utah from California, and we instantly hit it off. Her mother, Shelley was a close friend to my mom dating back to high school. I became an adopted sister to the Rich family, and she became an adopted sister to the Nebeker family. I will never forget a conversation we once had while walking home from school. “Grace, I think your mom is the coolest. She is always so much fun. She is up for adventure, she can do anything. My mom is not nearly as much fun as your mom. And, she is always tired and feeling sick.” Grace and her mom were always really close. She agreed with me but added, “I wish my dad was more like your dad. Your dad is so cool! Plus, my dad has health problems too.” I named a few more things that drove me crazy about my mom, and Grace did the same concerning her dad. Then, I don’t know which one of us had the idea first, but we decided (this is going to sound absolutely horrible, but keep in mind we were young kids) we wanted my mom to die and Grace’s dad to die so that my dad could marry Grace’s mom. “Wouldn’t that be great to be sisters? And then we would have the coolest parents in the world! Just imagine my mom and your dad together.” I would like to think that deep down I didn’t really want my mom to die, but, at that time, I can’t say for sure. Isn’t that what is supposed to happen? You get sick, you get sicker, soon you die, and then everyone can move on with their lives. I thought that sounded a lot easier than living with a sick mother. Sometimes, maybe death seems like the easy way out. When my mom was a teenager her parents went through an awful divorce. My mom said that she was the only one her friends to have their parents divorce, and at the time, she felt it would have been easier if one on them had died.
I have always had an extremely hard time talking to people about my mother’s health. I always want to give the short and easy answer. I think this was partly due to the fact that most people only seem to want the short answer. They get uncomfortable if I decide to tell them how she is really doing. But, the bigger reason why I would choose to give the quick response of, “She’s doing o.k.” or “hangin’ in there” or “Just fine thanks,” is because I hated to reveal my mom’s weaknesses to just anyone who asked. Weaknesses that she did not have control of. Weaknesses that you could hardly notice on the outside, but were taking over her every move and thought on the inside. Multiple Sclerosis is not an easy illness to accept. In some ways to me it just seemed like a whole bunch of excuses. I know that MS is not a whole bunch of excuses. It is a disease affecting millions of people. There are so many sons and daughters just like me who struggle each day watching their parent go through ups and down that are totally unpredictable.
So, now are you asking, “What exactly is Multiple Sclerosis?” I will give some basic information that hopefully will give more insight into what this disease is all about. Multiple Sclerosis is believed to be an autoimmune disease that primarily affects the brain and spinal cord (central nervous system). In MS, the covering of the nerves (myelin sheath) is destroyed. This process is demyelination. The underlying nerve fiber may also be damaged or severed. Like insulation on electrical wires, healthy myelin insures rapid transmission of nerve impulses. When myelin or nerve fibers are damaged, the messages from the brain, for example, to move a body part, and messages to the brain, for example, to interpret sensations, are not transmitted effectively. Body movement may be slow or uncoordinated and body sensations may be altered.
While healing and return to normal function (remission) may occur, scars (called plaques) may form that permanently interfere with motor and sensory control. Damage to the myelin sheath can occur at any time and affect any part of the brain or spinal cord. The disease is called multiple sclerosis because there are multiple areas of scarring (sclerosis).
We don’t yet know what causes MS. Destruction of myelin seems to be due to an abnormal response of the immune system in which cells that normally protect against illness react against the body’s own tissues (an autoimmune response). A virus or other agent to which someone is exposed in childhood might trigger this abnormal immune response in later life. The disease is not directly inherited. However, there appears to be some genetic susceptibility to MS.
So what does happen to people with MS? This depends on how often episodes of demyelination occur and how much of the brain and spinal cord is affected. The most common form of MS is relapsing-remitting MS. This is the type my mom has in which she has clearly defined flare-ups or relapses when her symptoms become dramatically worse, followed by recovery or remission, when the symptoms go away completely or partially. Seventy or 85% percent to people with MS begin with relapsing-remitting MS. About 15% of people with MS have a progressive course from the start. Their symptoms generally do not remit and may become worse. About half of all the people who begin with relapsing-remitting MS develop secondary-progressive MS within 10 years. They may continue to have attacks and partial recovery but their symptoms and disabilities slowly become worse. (National Multiple Sclerosis Society; Plaintalk, A Booklet about MS for Families.)
Some of the most common myths about MS are that #1: It is fatal #2: If you get MS, you’ll wind up paralyzed #3: MS is contagious #4: Nothing can be done to help a person with MS. In actuality, most people with MS have a normal or nearly normal life expectancy. Most people with MS are able to get around on their own. There is no evidence that a person with MS can pass the disease to someone else through casual or sexual contact, and there are now drugs that can help slow the course of MS in some people. There are also drugs that can help control many symptoms of MS. MS affects about 400,000 people in the U.S. There is no cure yet.
Honestly, could I live with Multiple Sclerosis? A huge chunk of my life is centered around various activities, sports, and being outdoors. I love the rush of standing on the top of a mountain, feeling my legs burning the whole way up. I love running to the point where I have to wipe the dripping sweat from my head. I love waking up sore after having an awesome workout the previous day. I love being a child when I am with my kids at the park. We do the slides together, the monkey bars, the swings. I chase my 3 year old as fast as I can across the grass and through the sprinklers. I am inspired to do these things and be this way because I can. I have the gift of good health. For me, that is priceless. That simple and pure joy in my life is huge. That is real living; running around without any limitations. Feeling youthful and free.
The alternative would be sitting behind the living room window, watching some neighbors briskly out taking their dog for a walk while talking and laughing. Sitting on an outside bench watching a husband and wife opening a fresh can of balls to play a game of tennis. Or, sitting in the car while pulled to the side of the road trying to get a glimpse of the water fall that your whole family has just jumped out to go splash in. As always, it is too hard and too much work for you to try to hobble up the mountain for a peek, so you patiently wait and watch while the others experience the excitement. Does that sound like a lot of watching to you? When I notice how often my mom has no choice but to watch while everyone else walks effortlessly, I am struck with how blessed I am to have good health.
I grew up loving the movie, “The Sound of Music”. Maria (Julie Andrews) was an idol for me. In fact, I imagined wanting to be a mother just like her. I thought she was the perfect definition of what a mother should be. You take your kids biking, in carriage rides, on picnic’s up in the Alps, dance along water fountains and flower gardens, falling out of canoe’s, having pillow fights, puppet show’s and of coarse, singing the whole time. Maria had bounds of health and energy while taking care of 7 kids. I thought, surely I will be the same way. No problem. My mom physically was not capable of being the “Maria mother” I envisioned, but I wonder if there are any mother’s out there who can fill that role as well as it is portrayed in the movie. However, I still see her character as a slice of how I want to raise my children.
There is a lot of sitting around when it comes to Multiple Sclerosis. There is a lot of missing out. There is a lot of feeling left out, like a burden on everyone, like a loser for not being able to do something that looks so simple. Why is it so hard? Often I find myself trying to force my mom to see the bright side of her situation when talking with my mom about her struggles. I remind her of the blessings she does have, and not to forget the people who love her no matter what. It is a challenge to encourage her again and again because honestly, she is not the only one who is sick and tired of dealing with her health, we all are.
Guilt also plays a role. My mom feels guilty for not being able to do everything she wants to do with her kids. We feel guilty for being impatient with her and not being as understanding as we should. We also feel guilty for getting out there and doing what we know she is wishing she could be doing. Again and again and again, my mom was left out on our family ski trips, camping trips, and hiking trips. Basically anything that requires any minimal walking, or is outside in the heat. If she does decide to expend all her energy in order to do an activity with us, there is a good chance she is going to regret it the next day when she can’t get out of bed from pure exhaustion.
Some people do not know the common symptoms that affect people with MS. For instance, difficulty with walking and poor coordination is two obvious and common symptoms of MS. But many other common symptoms are invisible. They affect the person’s behavior and emotional state. Knowing more about them can explain why a person with MS is irritable or hard to live with. Some of the common symptoms that have all shown themselves in my mom are: dizziness, weakness, fatigue, tingling in the legs and feet, numbness, loss of balance, temporary loss of ability to move the legs or arms, blurry or jumping vision, crampy or extremely tensed muscles, and or pain in a body part for no apparent reason. She also has been faced with the need to urinate without delay, constipation, headaches, poor memory for recent events, inability to make decisions quickly, and emotional roller-coaster feeling. These symptoms are caused by slowed nerve conduction (the nerves’ ability to carry messages). These symptoms come and go, sometimes so quickly that people with MS don’t know how they will feel from one hour to the next. Many of these symptoms can be triggered by heat.
During high school, I am sad to admit that I was a very selfish teenager. The way I dealt with my mom and her illness was by, the majority of the time, simply not dealing with it. I rarely tried to step in her shoes. I kept my distance. I tried not to allow myself into that vulnerable state where I could be affected by her condition. As a result, I never really knew my mom until my college years. We became very close while I was at Southern Utah University, and that closeness has always remained.
To be honest, there has never been a time when my mom’s illness didn’t affect me in one way or another, but the time that I became the most frustrated with her disease was right after having my first baby. I watched as my other friends had babies and I would see the way their mother’s would step in to help care for the baby, change diapers, rock and hold the baby, and take their grandchild for a time to give “the new mom”, a break. I expected this of my mother. I was very let down that she was not capable of doing these things. Of course my mom loved my baby with all her heart. Every ounce as much as all those other mothers, but she didn’t have the coordination and skill to change a baby’s diaper who is squirming around. It hurt her back to hold Josh for longer than a minute or two. She couldn’t bounce him around or take him out on a walk when he became fussy. And, there was always the fear that she was going to lose her balance while walking with him, or let him slip through her fingers. I felt like I was facing MS again, for the first time. In my mind, I had a different picture of how I wanted my mom to be with her first grandchild. I was hard on my mom. I didn’t understand. I had anger that my mom couldn’t do the simplest things that all the other mom’s could do.
I went into her bedroom one night as she laid there with the covers pulled right up to the tip of her nose. I came in to say good night before heading out the door. I told her about how Josh had loved the Zoo earlier that day. As I explained his fascination and love for the elephants, she started to cry. I did not expect her tears at that moment. “What is wrong mom?” She wept in a weak voice, “I don’t know if I can do it again.” What are you talking about mom? Do what again?” I asked. “I am going to have to go through it all again Kristine. Do you know how much it hurt me to watch you kids out doing fun stuff with other mother’s and other father’s who had good health? I don’t know if I can stand to miss out on all the fun with my grandchildren. I don’t want to face it again. I want to be the one taking him to the zoo. I want to help him throw rocks into Cecret Lake. I want to be able to do what a normal grandma can do.” She became more and more emotional as she said this, and now I also had tears streaming down my cheeks. “How will he ever love me when I can not take him places and run around with him at the park? It isn’t fair that I have to go through all these emotions again now that I am a grandma.” I truly felt my mom’s pain at that moment. I realized for the first time that she really did want to join in on all the activities we did as a kid. I guess I had kind of figured that it wasn’t a big deal to her that she missed out on so many trips and sports. I was humbled.
I am at the stage in my life right now where I have two young children and I have many friends who have three young children. What a physically exhausting and busy time this is. I now try to imagine being in my mom’s shoes with three young kids and having a chronic illness such as Multiple Sclerosis. How did my mom do it? We hear mother’s complaining all the time about lack of sleep, or being worn out from chasing a toddler all day, or dealing with a teething baby. How often do we take our health for granted? What if all of a sudden, us young mothers (or not so young mothers) had our health swept away from us in the blink of an eye. Could we take on three little children while limping down the hall or crawling up the stairs like I remember my mom doing? One day my dad explained to me why my mom could not stand to put on her make up or do her hair. Instead, she sat on the floor; always taking three times the amount of time it would take me.
Being a mother takes more patience and energy than I had ever imagined. How do you be patient when your tiredness never goes away, when your legs ache every morning, and you don’t believe there will be a light at the end of the tunnel? This is it for you. This is your life. You will never have the same body as you did before. You may never be able to run down the beach or after a ball, or feel the freedom of riding a bike, or the exhilarating feeling of being dragged out of the water for a ski behind a speed boat. MS stole my moms passion for whizzing through the tree’s up at Alta ski resort, and slamming a ball with all her might over the tennis net. These are but a few of the simple and purest joys that faded into distant memories of my mother’s past. My mom didn’t lose everything, but she sure lost a lot.
Her greatest passion, which may have been the worst of all, was watching the coordination slip out of her fingertips as she fumbled to play the instrument she had worked her whole life to excel at. She had spent countless hours at the piano perfecting Chopin, Braham’s, Beethoven, Schumann, and Mozart. I know I made it sound like my mom was not around very much when I was growing up. However, if there was one place she was, it was sitting next to me on the piano bench. She taught me to play from the time I was five years old, and once I started the 2nd grade she found me a wonderful teacher, but continued to work with me each day side by side. Now, although my mom was very sick during these years, it was a huge priority that I excel on the piano. I loved having her sit with me on the piano bench- most of the time! It was a bonding time for us. She paid strict attention to detail and would not budge about letting me off the piano bench until the timer went off. Although she could barely play the pieces I was learning, she knew how to teach me, and for all her hours sitting by my side, I will be forever grateful. She passed on her love for music to me. That gift will always be priceless.
I deeply, truly love my mom. There is so much more I could write about her, and one day I will. She has touched the lives of many people. And, her grandchildren absolutely adore her!
We love you grandma Graham! (We missed Nancy in this picture. 
She does look a bit like Ty. Nancy gave her this adorable dress!
Here are the twinner cousins. Josh and Jackson, born 2 days apart. They are quite the pair.
This picture was taken a week after we finished 
And here is Josh at 10 months.
I LOVE the baby stage!!!
The count down is on for Christmas 2008!!!
And here is Josh at 10 months.
I LOVE the baby stage!!!
The count down is on for Christmas 2008!!!
