I found an amazing new neurologist, and she spent hours reviewing my history, and trying to puzzle out my medical issues. She is treating me as best she can, but still thinks that a visit to UCLA will be helpful, so UCLA, here we come. I am scared.
My counselor asked me if I really understood what a diagnosis of MS, or worse could mean. I do. It means painful procedures. Difficult days, long nights, and horrific treatments that can just hold the disease at bay. It will most likely mean that I will hospitalized frequently in years to come. Some mean that I will become paralyzed, or lose my eyesight, or my ability to communicate, or even read and write. Divorce rates are high in couples where one has a chronic illness, which means I could end up alone. I will live a slow painful death.
I have decided that due to the regular recurrence of illness and the fact that I am prone to catch every other bug that comes along, that I can no longer work. I have to find new teachers for my students, and I will probably apply for disability just to help my family financially. It is all a sad and difficult prospect. I love teaching, and without work or school, I am home, alone. Damon and Benjamin will go on with life. They will work and go to school, hike, camp, run and play. I can't. It is hard to tell my son that I can't do the things he wants to do. I love him, and we talk. He wants me to play with him, but it is hard for me to keep up with my busy six-year-old. I cry a lot over that loss. I know that I can be part of his life in other ways. He will come to my bed and tell me about his day. I can teach him from my bed, and we have already had many touching conversations. He is a strong and adaptable little boy, and I know that he will turn out to be a wonderful young man.
Damon get angry a lot. I cry, he yells, and Benjamin misbehaves. We all deal with the stress of this differently, and no one way is correct. I know why Damon yells, but sometimes I still feel bad. I try to let him have outlets to relieve his stress. I have even given him an out of our marriage, but he is determined that I am his to have. I love that he is not afraid of my future, and that he will stand by me no matter what. I am so blessed to have a spouse who can handle this without becoming overwhelmed. He has his moments, but it never seems to change his feelings for me, which is a huge blessing. I will need him in the days to come.
Now I just have to figure out what my life is. I do very little, sleep a lot, and mourn at night. I mourn what might have been, what I had hoped and dreamed of for my future. I worry about the medical realities that I may have to face very soon. I hope for remission, or an effective treatment, or cure, but plan for an early death. I don't want to leave my family, and I don't believe this will kill me for many years to come, but I do want to have things ordered so that they know I love them, and that they have reminders of me. It may be morbid, but I love them, and I don't want to be away from them, but on some level I feel like I might have to. Even paralysis, or loss of facility could take "me" away prematurely.
Many people worry that I am suicidal. I am not, but many in my position can become so. I have lost all that I deemed important to my identity as a wife, mother, and woman. I am having to rewrite that. I have a nasty problem of reacting to certain medications by becoming suicidal, and there have been times when I have felt the hand of God intervening to preserve my life. I don't know why my life is so important that it needs preserving, but I am grateful that I have never thrown away the experiences and opportunities that I do have. I have known despair, and hopelessness on a level that I never thought possible. I have suffered from hallucinations, and terrifying moments when I could not tell what was real. Depression is a monster that I fight regularly, and anxiety is no better. So much of that fight is unobserved. When I say I'm struggling to get up, and to find joy and connection in life, part of that is due to depression. I am trying to find an occupation that is useful, and that I can do with limited capacities. So far I haven't found anything. My therapist suggests I write my experiences, as they are rather unique, and it may benefit me to express and deal with my emotions in that manner. Some things are so sacred that I don't know if anyone will understand, others are so intensely painful, that I am afraid that if I write them out I will scare people.
I was a normal suburban housewife. I taught piano and violin, volunteered in my sons classroom, go to church regularly, and was in school to become a counselor. Now I am sick. I am one of the many who are chronically ill. When people say I look good, I want to scream at them. When I am told how I feel that day, based on other opinions, I just want to kick them, and hurt them and then tell them that they are having a great day, and should be grateful. When I am told to look at the bright side of this. I want to shut them in a darkened room for a week and ask them where the bright side has gone. I am angry. It isn't a feeling that I own well, or manage well. I am also so sad for all that is lost.
I believe in eternity. In eternity, I will know my Savior. I will know him as a dear friend and family member. I will have the children that I wish for in this life. Probably more than I can count. My husband and I will live in an amazing home, we will want for nothing. My pain and tears will be gone. We will teach those beautiful children all about science, and nature, literature, and art. We will love them and play with them. They will grow to become their own families and we will be surrounded by loved ones. We will be surrounded by friends. Friends that I cannot find or make now because I am unreliable and sick. My friends will understand all that I have endured, and I will understand what they have endured. We will teach our children together, and mingle our homes in ways that I have yet to imagine. Eternity is lovely, and wonderful and desirable. If I get only one goal, one pursuit, it is to become the woman who fits in that eternity. They woman who can be on equal footing with those amazing children an friends, and the woman who intimately knows and can live with her Savior. All of this is nothing compared to that. It is just so hard to remember. So hard to focus on that while they stick needles in your body, or when you are in pain, or when nothing goes right during the day. My bank balance may never be positive, and we may not get to go on vacations like other families, but if I can lead my family to the Savior, it won't matter.
I will endure pain, and there are many lessons to be learned. I don't want to. I want to live a happy, normal life. I want to be a mother to many children, and to have the ability to parent them in the way that I see other mom's do, but that is not my path. I must learn this new path. It is foreign and people don't talk about it a lot. There are few who understand, and even fewer who will endure this path with me for the long term. Hopefully I will find some of them soon. Hopefully there will be a diagnosis, no matter how grim. Hopefully I will be able to at least read and spend a little time with my family everyday. Hopefully I will remain able to care for myself until then end of my life, but I cannot predict the future. I don't know. Maybe UCLA will offer miracles. A diagnosis, a simple treatment, and a cure. I don't believe that will happen. I believe that this journey may be long and hard. I don't feel ready or prepared, but who ever does? My blog is designed to share that journey with anyone who may feel alone, or who may benefit. Even if it's just me. I have nothing to do tomorrow. It is late, and I can't sleep, because I hate being alone during the day. I can't drive, so I can't go anywhere, and my house is big and foreboding when I am alone. I have never had to spend so much time alone. So I sleep till my family comes back, and at night I listen to my husband snore, and take comfort in his presence. I need to learn to fill the days. It is my current goal, but with most everything I used to do being off limits, it would seem that I need to learn some new skills that don't require a lot of energy or dexterity, as my walking, writing, seeing, and such are not doing so well. I want to make my son a quilt, and a scrapbook that shows him my favorite memories, and who I am. I want to maybe find a way to earn a little extra money on the side, and I want to figure out how to be awake during the day without the anxiety. Lofty goals, I know. :) Maybe someday I'll achieve them.