When I was five years old my family, including my mother, father, and myself, were involved in a vehicular accident which the doctors assumed “triggered” my mother’s Multiple Sclerosis. She was eventually diagnosed with Primary-Progressive. I was young at the time, but I remember as she lost her ability to walk. I remember having events at school, and she was beginning to not have the ability to go more and more. I remember when she started using her wheelchair, and how she was stubborn about it. I was around eight, and her disease was steadily getting worse. She didn’t want the disease to take ahold of her, but it kept on nonetheless. I have horrible memories, such as when she fell off the porch, or when she cried because she had a dream that she was running. I have great memories of that time too, such as when she brought her power-wheelchair outside and got it stuck in the mud and blamed me. My dad quit his job to be her caretaker around that time. As I grew older and entered middle school, her disease steadied out, not drastic new symptoms anyways. She was beginning to lose the ability of her right arm, but it wasn’t too bad yet. Her goal was to make it to my high-school graduation, and at the beginning they didn’t think it would be possible, but she was making it. As time went on it got worse again, she lost her ability to get in and out of bed herself, she dropped everything, had trouble remembering. Her memory loss bothered me probably the most, I could tell her something and the next day I might have to tell her all over again. Sometimes she would not remember someone had visited, and introduced herself to my boyfriend the first few times he came over. Towards the end of high school, she lost her ability to feed herself, and I often had to help. I would get nagged if I didn’t pay attention or wasn’t fast enough. Through her disease, she always kept her role as my mom. Always. It was her motivation, and the reason she fought as hard as she did. The summer before I was a senior, she quit talking after a major seizure. She could understand us, and could sometimes say a few words, but not very often a full sentence- and she couldn’t get her point across. She always laughed though anyways. At that time, we had to call Hospice Care. She was unable to get out of bed anymore, and they moved her onto an Ensure liquid diet because she had begun to choke on her food, and we had a few scares. They helped us more than I can express, giving her everything she needed, and us as well. She made my high school graduation, but I’m honestly not sure she knew. She would have good and bad days throughout her entire disease. They told us three times that year to be prepared for her passing. This was last year, and at the beginning of this year they told us again. She lost a lot of weight, and had caught a cough that she couldn’t fight well, as she did before again. I turned nineteen on February 21st, two days after one of our nurses told me that I needed to tell her that she could let go. That I would be okay, because they believed that was the only reason she was still holding on. It was. At that time she was unable to eat anymore, without it entering her lungs. On March 2nd, she passed away while I was in class at college. The funeral was two days later. Instead of flowers, we asked if donations could be given to the Multiple Sclerosis Society.
I made this account because I thought that I would be able to help someone in a similar situation handle it. As I type this out, I realize that I may be the one that needs the help as well. I have so many memories that haunt me, because of what she has been through and what she had to handle herself. She had her body and abilities taken away from her, but she was always a positive person. She never complained about pain, and she never quite grasped that she wasn’t able to do things- she would anyways. She laughed more than anyone I know, and she loved music. Even when she lost her ability to talk, she would still hum. She inspires me. Through the entire ordeal she endured, she never let it break her soul. I have difficulties thinking back onto memories that she was not able to experience with me, and the ones she will not be there to experience with me in the future. She was not able to go to the musicals or field trips, she was not able to give me rides to football games and club events, she was not able to help me get ready for Homecoming, she was not at my high school graduation. She will not be there at my college graduation, she cannot help me pick out a wedding dress, she will not meet my children. I know she is there in spirit, but it hurts me nonetheless.
My hope is to one day look back at this experience, and to not be so saddened by it. I don’t know how it will be possible, but after five months of her being gone, the pain feels worse than it did yesterday. Sometimes I believe that it should be, that this isn’t something that someone is able to get over. Especially when this disease took part of my life at the age of five. I do not have the disease personally, but it has affected me more than I ever knew could be possible. I try to find lessons in my past, I try to see what God was trying to teach me at that time. At this time, I feel as if he is teaching me to be more dependable on him. I understand he does everything for a reason. I do not know what I would tell someone who is new to Multiple Sclerosis. My mom has had one of the roughest roads, but the disease comes in different forms, so don’t panic right off the bat. She had a severe case, but she lived around thirteen years with it anyways- she definitely struggled, but her soul never ceased. Don’t ever let this disease hurt who you are as a person!! Find methods to enjoy life beyond the disease. Her love for me kept her alive. I heard my entire childhood, “One day she isn’t going to be able to swallow anymore.” Other than her inability to walk, she seemed fine to me when I was younger, and I always imagined that “day” would come when she was in her old age. It didn’t work out that way obviously, and that “day” came. And I remember the fear I felt each time we hit a milestone that got her closer. Every time I saw someone who didn’t come to the house often ask, “How is your mother doing?” I would answer, “Oh, she’s doing good….” And name off some funny story of what she had done that week. I remember when that changed, and I had to explain that she was, in fact, not doing good and I would have to explain what was happening. I don’t know how to help someone else through that, it’s something that you have to grit your teeth and do because, that is death and not Multiple Sclerosis, and everyone will have to endure that. You’re not alone.