Jess's Story

(My daughter emailed this to me Dec 26, 2013.  I got her permission to share this with you.  This is her email in its entirety, unedited.) 

Jessica Renee Segeberg Anderson

My mom was diagnosed with Multiple Sclerosis May 16, 1996. I was four years old then. I don’t have a lot of memories from back then, and the ones I have are few and far between and fuzzy. I briefly remember her first relapse. I was five. My mom used to walk me to school and drop me off, but one day it was my neighbor. All I knew was that mom was sick, and I assumed that she would walk me to school again once she got better next week. She didn't. After that I walked to school with some of the girls in my ward who went to my school. I’d come home and my mom would be in bed, in too much pain to move. I’d try to have her read me stories and cuddle with her to make her feel better, but cuddling with her caused her too much pain so she would flinch away. I often wondered if she was dying, and that scared me.

At a young age I had to step up to the plate. I was the oldest, so many of the responsibilities fell to me. I was cleaning the house when I was six; doing laundry when I was eight; learning basic cooking and baking when I was nine. I knew I had to pick my toys up so that mom wouldn't hurt herself on them. I thought I had to help Taylor too, since he was the youngest. He didn't like that very much. I quickly had to accept that my mom couldn't do my hair in ringlets all the time, and if she did I needed to be patient. I knew that she would burn her fingers on the curling iron sometimes. At the time I thought if I held really still she wouldn't.

During my elementary school years I didn't tell people about my mom. I knew they wouldn't understand. Many of my classmates would ask why my mom never came on field trips with us and why she only did crafts for our holiday parties and took a while to stand up when it was time to leave. I always had an excuse. The only ones who understood were my closest friends: Katie, Tiana and Quinn. They knew it was easier for my mom if I went to their house so she didn't have to worry about me. They knew that my mom wasn't always able to drive me over, so I had to ask their mom to come get me to come over and play. They were always patient, and they never asked questions. To this day I am still grateful for their love and understanding.

My dancing years were also hard. My mom would use all her energy trying to get my thick, short hair in a perfect bun with glitter like my teacher would ask. Because of the lack of feeling in my mom’s fingers, I would often walk away with several pulled hairs, sore spots where I had been stabbed with the bobby pins carefully stuck by my mom’s shaking hands and I felt like my eyes were being pulled back Chinese style. Several times I thought my eyes would stick that way. Even if the bun was too tight I didn’t dare say a word to her because it took her forty-five minutes to get my hair that way and she was tired. She had to teach me to put on some of my own make-up since she couldn’t do all of it. What wasn’t done was done by the other dance moms who understood.

My mom’s condition really struck me hard when I hit middle school. My mom had offered to take me shopping at the mall for back to school clothes. But because my favorite stores were so spread out, we had to rent a wheelchair from the front desk. It was too hard for her to walk. While I tried to be the understanding daughter, a small part of me was embarrassed. My mom was supposed to take care of me, so why did I have to push her around in a stupid chair? The trip quickly became frustrating; the clothing racks were put too closely together; people would stare, especially when the chair became stuck (which was often); when my mom would ask the sales person a question they talked down to her like she wasn’t all there; others would avoid us entirely. How dare they? Why do they just stare when clearly a twelve-year old girl is struggling? Why are they staring at all? Can’t they see that my mom is a very intelligent person and does not need to be talked to that way? And we don’t have the plague! Walking past us is not going to put you in a wheel chair, though I might put you in one. After only a few minutes I would quickly become irritable and snappy, making the trip unpleasant for the both of us. This was repeated every year during my time in middle school. Sometimes I would run into classmate, who would stare and be confused and then corner me the following day at school. “What’s with your mom?” they would ask. “Why is she in a wheelchair? Is she handicapped?” And then following the questions, before I could even explain, was the look of pity. I grew to hate that look. I would always brush the questions off with a brief explanation, since I knew they really didn't care that much. “She has MS. Walking is difficult for her sometimes.” This was often followed by a “oh, okay” or a small nod. Occasionally I would get the question asked by one of my overly dramatic classmates if that meant my mom was going to die soon. No, no it does not.

Ninth grade things started to get a little harder. I was hanging out with friends more often, friends whose mothers didn't understand and were too busy so my mom would have to drive me. At one point I was “dating” a guy in my orchestra class. Thinking I could open up to him about my mom, I tried. Instead, I was shut down with all his problems and how my mom’s disease was nothing compared to his pain. I’m still trying to figure out why I stuck with him for so long (six months). Thinking that others would be the same, I shut the concerns about my mom away. I even stopped talking about it to my friends who already knew about my mom’s condition.

I started high school trying to hide the fact that I was concerned about my mom’s well-being. I had been watching her for years give herself shots every other night to help with the symptoms, but I was frustrated. They didn't seem to be working. I felt like it was just dragging out the inevitable, whatever that was. I didn't want to think about it. By this point I had pretty much taken over the majority of the house-hold duties—laundry, dishes (most of the time), sweeping, mopping, vacuuming, and keeping the house clean. I became a neat freak so I spent most of my energy doing this. My mom would make dinner most nights and have me help. Occasionally when she had done too much in the garden, or she had decided to haul out her scrapbooking stuff and worn herself out, I would make dinner. I would often stay up late to do my homework so I could make sure that I was available when she called me. Often I would get frustrated with this, but I knew that she needed me. I had no idea what I was in for in the next few months.

One morning in February 2008, I woke up to my alarm. I shut it off and rolled over to try and catch a few extra minutes of sleep when I noticed that the lights were all off in the kitchen, and it was quiet—too quiet. My dad was out of the country, but usually my mom was up at this point. She was usually yelling at me to get up and get ready, because I took “foreeeeeever.” I got up and got dressed, thinking maybe she overslept. Taylor came upstairs a few minutes later, also dressed and ready for school. He looked confused when he noticed that mom wasn't up yet.

“Where’s mom?” he asked me.

“I don’t know…” I got up to go get her. It was her turn to drive us to school and we had to leave soon. I slowly opened her bedroom door trying not to let any light in. To my surprise, she was awake. But she was still in bed, only half dressed and crying. She told me that our next door neighbor was going to drive us to school today because she wasn't feeling good. I rushed to the kitchen and got her a tall glass of ice water and some crackers to munch on. I didn't know it at the time, but my mom had relapsed. Her body had started rejecting her old medication and to start a new one, she had to go a month without her medication to detox her system.

It was the hardest month of my life. With my dad gone for two weeks, I suddenly had more things I had to take care of. At sixteen, it was overwhelming. I had to make sure that Taylor was up on time to get to school. I had to make sure that my homework—and his—was done for the next day. I had to make dinner for both of us, and my mom when she was feeling up to eating. I had to keep up on laundry, which seemed to never end. I couldn't hang out with my friends because I was scared of leaving my mom. A few of them became angry. “Why do you have to take care of her? She’s your MOM. She should be taking care of YOU.” This never made sense to me. It seemed selfish to me. My dad called as often as he could, but being in India made it hard. I cried on the phone to him a lot because I didn't know what to do. At one point, my grandma came over to help, which was comforting. But nothing could change that my mom was deteriorating in front of me and I couldn't stop it.

During this time I became severely depressed. My friends who didn't understand left me, thinking I would sort it out myself. Tiana and Quinn stuck by me though it all, offering to come over and help if I needed it. I’m wishing now I had taken them up on that offer. I’m sad to say at that time I shut a lot of people out. Including my mom.

In the middle of March, when my dad had returned home, my mom started a new medication—Tysabri. While I was grateful that she would start getting better and functioning again, I knew the damage had been done. My mom now had foot drop; her right foot now dragged on the floor, causing her to limp. She couldn't walk down to the bathroom without using the wall or her cane for support. She had to use the electric wheelchairs at the grocery store, and she couldn't do all of it without some help (usually me).

During this time I had made a friend who I had learned to trust. At some point—I don’t remember when—I had opened up to him about my mom and my concerns. Thinking that he would reject me like my “boyfriend,” I tried not to go into too much detail. But I was quickly surprised. He asked questions, showed his concern, asked if there was anything he could do personally for my family, even if it was just a prayer. He was the first person that I completely opened up to about my mom’s disease, and that I was afraid of losing her. I told him I was probably defensive about it because I was trying to ignore it, make it go away. Since I was a kid I've always subconsciously thought that if I ignore it, it will go away. But that’s not the case in life. And I will never forget what he told me.

“Shutting down and shutting people out isn't going to make it go away. Shutting her out isn’t going to help her. She needs you, Jess. She loves you. Maybe it’s not fair that you got dealt this hand in life, but I know you are strong enough to do this. So stop shutting everyone out, especially her. Be the best daughter you can be for her.”

Even though it’s been hard living with a mom who has MS, I've learned a lot. I do not feel sorry for myself, and I don’t want anyone to feel sorry for me. Even though it’s been hard, it’s been a blessing. The past eighteen years have taught me more than I now. I didn't realize it until I moved away.

1. I am more mature than a lot of people my age. A lot of people used to pity me for “losing my childhood” but I have never felt that way. Even though I had to step up to the plate at a young age, I still got to be a kid. I still got to run through the sprinklers during the summer and play on the playground. I played with my toys and read books. I still got to be a kid. And because of everything I learned, I was well prepared for when I moved out. I taught one of my roommates to cook and I am currently teaching my husband to as well. I’m still teaching him my definition of “clean” as far as the house goes.

2. I know how to work and the value of it. At thirteen I volunteered to work at the Scera Theater in town to get some work experience for when I turned sixteen. What surprised me most when I started there was I already knew how to work. I knew how to work because my mom had taught me. I knew that I had to do to my absolute best and not take any short cuts. In my house, taking short cuts and not doing it properly meant doing it again.

3. I’m close to everyone in my family. Because my mom was sick so often, Taylor and I often were left to fend for ourselves entertainment-wise. We knew the rules; we had to finish our chores before fun, and we were only allowed to be on the TV for an hour and a half. After that, Taylor and I usually went to our rooms and devised some way to play with my Barbies and his action figures for his tree house. Sometimes we would combine our TV time together and take turns being Link (from legend of Zelda) and his off screen side-kick or the little blue fairy Navi (on screen). Sometimes this was nixed though because our high pitched voices would irritate my mom. I don’t blame her. Often my dad was asked to run errands for my mom. My dad would invite me along to spend time with him, because sometimes it was all we had. I still cherish the times were we would crank the stereo as loud as we could (because we couldn't when mom was in the car) and sing at the top of our lungs with my dad playing the air guitar or using the steering wheel as a drum. I didn't get to go on a lot of “shopping” sprees like other girls do with their moms, but I did spend a lot of time playing games with her. Our favorite is Scattergories. I have her (and video games, believe it or not) to thank for my vast vocabulary. When she was feeling good, we would spend a few hours playing until our brains hurt or until we started getting the same answers (which was often).

4. I know who my true friends are. With my mom’s relapse, I learned who really cares and who doesn't. The people who are my friends today stuck with me through everything—thick or thin. Even though we've all moved away, we still stay in touch and they always ask how my mom is and how they can help, even if it’s just a prayer.

5. I don’t judge others and I try to serve where I can. I used to get so irritated with people when I would get the judgmental looks when they would see my mom in a wheelchair. Over the years I've learned to look back at them and make them as uncomfortable as possible. I've even come out and asked a lady what she was looking at and that it was rude to stare. I know that people are rude, and ignorant. But that doesn't mean I should be too. I've always tried to be caring to those who are different, and I go out of my way to help people in need. One day at the grocery store an elderly woman in a wheel chair dropped her credit card. Immediately thinking of my mom and how long it would take her to get out of the chair, grab the card and then hoist herself back into it without knocking it over or falling over, I stopped. I stooped down, grabbed it and handed it back to her while I helped her back into her chair. She thanked me, patting my hand and looking into my face with her teary eyes. It only took me a minute.

Even though the past eighteen years have been a challenge for me and my family, I feel that we have come out on top. I realize that things could be much worse and we are blessed. I've tried to always look at the bright side of things to keep my chin up. Sometimes its things like watching my mom buzz along the aisles at Joann’s in the electric wheel chair; she’s pro at it now and buzzes a long like she’s in NASCAR and not the store. Other times it’s help from ward members or friends. Even though life was hard, I’m grateful for my challenges.