I have MS. I have fatigue so extreme I cannot wake up some days. Instead I lie in my bed in the middle of the living room and sleep while three children jump on the bed all around me and get into things that they shouldn’t. I have ataxia or loss of muscle control and mobility problems. I fall over for no apparent reason. I am just standing still and then I am not. I am tipping, falling, racing toward the floor before I know what I am doing. I cannot predict it. I cannot stop it. I have tremors. I look like a person with Parkinson’s at times and I am embarrassed. I cannot type this page without constantly erasing the extra letters my betraying fingers keep adding to the page. I have pain and muscle stiffness that won’t let up. No pills or shots or infusions have made it go away. I can’t tell if it will come on me when I wake or when I turn my head or when I sigh. It comes when I least expect it, when I least want it, when I can least cope. I have lost sensation from the chest down. I cannot feel my feet at times. I can’t tell if my husband has his hand on the small of my back or if my children pinch my leg on certain days. I have blurred vision some days. I see clearly and then I blink and I don’t. Everything is a cottony surreal dream world where I can’t read the street signs or see what the faces are trying to tell me. I have bladder problems. I must always know where the bathroom is in case I just can’t wait anymore. I feel that I have to go all the time. I am worse than my children when I need to go, I need to go now. There is no waiting. I have loss of cognitive function. There are days where I cannot remember what name goes to what person, son or daughter. I forget the words door, stove, and, blue, diaper, food, car, and too many others that I can no longer recall at all to remember that I forgot them. The same words or phrases get stuck on a loop grinding through my head like a slightly hysterical broken record. Not smart things, but nonsense things. Things like my 2 year olds word for Popsicle, pocasul, or broken bits of songs or halves of words that make no sense. I have a cane. Actually, I have seven canes, the start of a collection. I have MS and it has hurt me in more ways than I can clearly articulate now, maybe ever.
I have MS. I have the blessing of knowing that I am not crazy. My symptoms are real and have an explanation. I have the blessing of three children who are smart and compassionate and caring. They care for me in their childish ways when I cannot care for them, and it blesses me beyond measure. I have been blessed with a loving, compassionate, gracious husband who can understand me. He has lived a life filled with many of the experiences I am now having, and so he can empathize like no one else. He balances everything so carefully to care for us and it is a blessing to all of us. I have the blessing of a loving family. I have parents who drop everything if I need them to lend a helping hand when I am unable to help myself. I have in-laws that are caring and generous and always lend help when it’s needed. I have relatives on all sides of the family tree that pray and think and ask about me, and they bless me by that. I have friends all around me, at the church, in the neighborhood, around the world. They pull apart my needs and pass them around and bring them back to me cared for. They don’t let me make excuses, and that is such a blessing. I have a house and a car and things galore that I find comfort in and because of that, they are a blessing to me too. I have community. There are people that have joined together around us, physically and emotionally, and they form a network, a community of support and love and blessing. I have faith. I see from past experience that even in dark and seemingly pointless things, there can be blessings. Good can come from bad. Purpose from loss. Meaning from what seems meaningless. I have been blessed to see this in my life repeatedly. And I have faith that I will be blessed to witness it yet again. I have creativity and intelligence. I have ideas and the determination and ability to see them to glorious fruition. I have the support of my friends and family to see things through. I have comfort. I see God in my life, and I feel his arms around me on the days and in the moments when I cannot stand on my own two feet, even with my cane. On the days where I only need Him to hold my hand, I feel Him next to me, encouraging me on.
I have MS. My life sucks. But only if I dwell on the first set of things that I have. Not if I think on the important things that I have.
This is a stunning bit of writing. Absolutely beautiful.
ReplyDeleteThank you for sharing your heart and your pain. Perhaps it will help us begin to understand what you are experiencing. And it will remind me to pray for you.
ReplyDeleteTracey,
ReplyDeleteI am a wheelchair at age 43, from what appears to be MS. I could totally identify with all you are experiencing. The fatigue was the first thing that put me in the wheelchair. Hey, I know a Delamarter--Steve, and his wife Beth. I think you may be connected to him. Steve and Beth go to my church. I first met Steve at the seminary, and learned the Old Testament from him. He's great! Anyway, I don't have long to write here, because I am in the crunch time for a massive writing project with a New Year's Eve deadline. I will pray for you, especially that your MS doesn't progress. If it does, know that you will still be able to cope, because of God above. Things may seem insurmountable at first, but
if you keep looking up, you will be able to work it out. God Bless You!
Trace--I agree with your husband! This was an amazing post... I also liked the most recent December one because it sounded so much like the unique woman that you are...keeping a sense of humor in the middle of it all. I can't wait to talk to you soon...I will just try, but tell me if there is a good time to call.
ReplyDeleteLove,
Melissa