Today, June 22, one year ago I lost a very dear friend to a blood infection and this started a downward spiral of heartache for me. I attended my friend’s funeral on the following Tuesday, and then on July 6th my very best friend died and then on July 13th I found out about another really good friend that had passed and then on July 20th I found out about another really good friend that had passed and then on July 28th I learned that my cousin had passed. That was sooooo overwhelming and the grieving was out of control. That was 5 people in 5 weeks. Then just about 4 weeks later I learned that I have a genetic disorder that explains all of my aches and pains and the disabilities that have kept me from being able to live my life like I always thought that I would. I had never heard of that disease, Ehlers Danlos Syndrome, but once I learned all about it, I am still learning, I began grieving for my lost life as well because I knew that I was not going to get any better than I am now and most likely I will decline even more.
My Sweet Sweet Best Friend Cindy!
I am a missionary and my dream since the age of 3 was to go to the mission field and I felt God calling me to do that when I was 9 at which time I committed my life to serve God as a missionary. Seven years ago I moved to Nigeria and although my body hurt and it was very physically challenging and really really hot, I was living my dream. I am back in the States now and I am very very sad that I will not be able to return to Nigeria. I know for sure that if I can't even go to the grocery store for 20 minutes without nearly dying then there is no way I could make it in Nigeria. I know there are other missions that I could do but I am tired of hearing that, I would love to hear from someone who says, "I am sorry that you aren't going to be able to do what you believe you were created to do, that must feel sad and scary and be a hard thing to face....." I know that folks just want to encourage me, but not a single friend has said that to me, they only tell me how much I can do missions here but they don't understand that I can't even stand more than 5 minutes to wash dishes because I am in so much pain and I am so dizzy all the time. I don't know how they think I am going to "save the world" like that?....lol.
I was told the other day that I had just given up on life once I learned the name of a disease that I have. I was also told that I had lived with this my whole life so why does it have to be different now just because I know what it is called. Well, that is right, I have had this my whole life and now that I know what it is it helps me take some pressure off of myself because I have always been very hard on myself about why I was not better at this or that, or why I didn’t have the same energy level as everyone else, and If I would have done this or that better than I would not be hurting all the time. Guess what? None of that is true, it is not my fault that I hurt all the time or that I don’t have enough energy to sit up all day without having to lay down. The lesson that I have learned this past year is that if I would have listened to my body way back when, when I was hurting and tired and what not, then I could have paced myself and maybe I would not be so disabled now, and maybe not, but the fact that I know what it is called that is wrong with me does not mean that I have taken that as an excuse to stop living.
Those who know me know that I am a people person to the max. I love being around people, I thrive being around people and because I can no longer do that like and when I could before, is very hard on me. I have lost so many things…… Also, those who know me know that it is a huge great deal that I am taking time to rest when I need to and to ask for help when I need to and to not push through the pain realizing I am damaging my body and my future. I am not the best with self-care for lots of reasons, but now I am forced to take care of myself and even that is a reality check that I am not comfortable with.
All in all this past year has been lots of up and downs and discoveries both positive and not so much and there have been many many days that I would have traded places with any one of the 5 people I lost as I know they all were believers in Jesus and are all in heaven. I have been extremely suicidal this past year and even now I am not real excited about being alive all the time. When you have a chronic illness, that is bad enough, but when you have a chronic illness that no one can see that is even harder. If I were bald from treatment and dragging around an IV pole then I would get phone calls of prayer support and people would bring me potluck suppers. But that has not happened other than just a few very dear friends praying for me…. Which I am soooooo thankful for.
I wanted to share this today because I am feeling very sad at the loss of my friends and I am also very scared because I don’t want to go through another season of such great loss. I know that we never know when we will get news like that but I am not finished grieving my friends or my life and to think of any more of that scares me.
The only hope I have is in Christ and my faith in Him and that I know that no matter what, I will spend eternity with Him and my friends and family!