One of the lessons in this last year that I have learned is that everyone has a story. I remember sitting at a women's holiday dinner and the speaker said something that was so profound. She said that everyone is struggling with something. That blew me away because I figured I was the only one who didn't have things together. I looked around the table and I could name at least one struggle in each of the women's lives I had invited to sit at my table. All that is, except one. There was one lady at my table who I had been friends with that I couldn't identify what she might possibly be struggling with. I made up my mind that I would make an opportunity to ask her. I did one day and she shared a couple things with me but I felt I was only being allowed a glimpse at the surface and not the deeper side. From that point on I have tried to look at people differently, knowing that every person has a story and stories have ups and downs but its our story that makes us who we are.
Unfortunately, we tend to only look at the surface and not see the deeper side. On the surface, as a society, we tend to put on a mask that says, "Everything is okay" as if the police will come and arrest us if we show anything of what is truly raging inside. Yet, I would safely take a gamble on the fact that there isn't a single person that isn't struggling with something. However, when we do know of a struggle in someone's life we tend to size it up or minimize it by saying, "at least its not the worst thing" or "you don't have it as bad as some people" or "it could be worse". Yet, to that person at that point in their life it is a BIG thing or they wouldn't be struggling with it. We also put time limits on struggles. We think people should "be over it" after a certain point and we become apathetic beyond the point we feel they should be fine.
Lyme disease is a lonely disease. If you have had it you would agree. If you haven't had it you don't have a clue as to what I am saying. When I first began to be really sick back in 2000 people prayed and were genuinely interested. But as the weeks turned into months which turned into years, people became apathetic. They wanted answers just like we did. We are a weird species because if we don't get answers we then begin to think something is wrong with that person. "Its all in their head" we hear people say. They get frustrated, but not as frustrated as the one who is having to live with it with no answers. After a while, you start questioning your own sanity..."maybe I am crazy", "maybe its not as bad as I thought". I went through this. Also, my immune system was so suppressed that I was sick a lot. This wears on people as well and the apathy sets in. There were a couple years that a lot of my symptoms let up...all except my hands (the bacteria can go dormant). They had let up and were tolerable so I ignored them. Then, when they came back it was like starting all over again, only this time I kept most of it to myself. Chris and I didn't tell people what was going on with us. I figured I would wait till I had something concrete to share. "Obviously it wasn't serious or they would have found something by now" I thought. I began to question my own instincts. I knew something wasn't right and because others became apathetic and questioning, I began to doubt myself as well. Knowing what I know now, I will never doubt what my body is telling me again.
I have been dealing with this disease for 10+ years. I have two young girls and a husband. I am not one who likes to spend days in bed or on the couch. I like to live and I like to do life. I in no way want to hinder my family or hold them back or be a burden to them. Today, I realized why God put people in our lives. Life is about people and about relationships. God put people in our lives so we can be the hands and feet of Him. I feel my strongest when I feel someone has my back, is supporting me, sticking with me through the tough times and through the fun times. One simple text can fuel me for the day. One email can fuel me for the day. But when people become apathetic because they don't understand what is going on, or because I'm not getting better on their time table, or because I "look" like I am doing better, and they "give up" on me, that's when I have days when I can't possibly imagine getting through this disease.
I have a war raging inside me right now. A war I didn't ask for. A war I wish I didn't have to fight. I feel I am in the biggest fight of my life right now. A fight that I have been told will take over a year to beat. I feel it is all I can do each day to stand strong physically, emotionally, and spiritually. If I'm not hurting physically, I am fighting my emotions from going all over. Some days it is both. Most days I feel as if the world is going on without me while my life has stopped moving. I yearn to be a part of the "moving" world around me. I fear missing any more of my children's lives then I have to. I realized in trying to put "my story" together on here that I have been sick for almost my entire marriage. Chris and I don't know our marriage without me being sick. This thought blew me away. But its days when I feel misunderstood or that people have become apathetic because they don't understand (and they don't ask or read to understand), or because I "look" like I'm fine so I must be fine so they can stop "caring", or because I'm not well on someone's time table besides God's...these are the days that I am the weakest and the days when I can't imagine getting through the next year.
I feel like if I had cancer, people would understand better. They would understand the treatment, the time table and possibly how I am feeling. This is the most frustrating, complicated, complex disease I have heard of and yet it effects every crevice of your body. There are very few doctors who are familiar with it, understand it, and know how to treat it. Doctors can't agree on how to diagnose it, treat it, or how it even effects the body. The only thing doctors agree on is that you get if from a tick. Basically, I have had this bacteria multiplying and spreading all over my body for over 10 years. There is no definitive test to see if all the bacteria is gone once treatment begins. We need a doctor in Texas to help us fight this and we are struggling to find that. For the first time in my life I know I can't do this on my own. When others have my back then I am strong and I know I can beat this thing. When others give up or become apathetic I am weak and I don't feel I will ever get my life back.
I hope I take what I have observed and learned in the years past and use it help and encourage others. I have seen what I have observed in others, in myself and I have had to fight to not become apathetic when I don't understand what is going on in someone else's life or when things don't happen on my time table. I hope that I am a stronger person on the other side of this disease, and that God will me to help others and encourage others, and be the type of relationship God designed me to be so that I can be a strength to others and not a weakness.
