This Disease Sucks!

This disease sucks! I don't know how to say it better than that.

My biggest medical fear has always been having a stroke. Cancer I dealt with. A heart attack would be bad, but most times allows for recovery. Having a stroke, and having my mind still be alert and active, but my body not able to cooperate? That has always frightened me. I remember, very well, a day, when my daughter was three years old. We were visiting the home of an older couple and the husband had suffered a pretty severe stroke. This man was brilliant. He was an architect and some of the buildings he designed were pretty amazing, in my opinion anyway. It was so sad to me that here he was trapped, unable to communicate well with even his wife. My daughter blew me away that day. She sat and interacted with this man for over an hour while we worked with his wife. When we were finally ready to leave and found her still with him, we realized that she was truly communicating with him. I finally understood it was because she was still in the mode of listening and learning, with no preconceived ideas of how things should be. She learned in that short period of time to adjust her thinking and listening to understand him. You cannot imagine how happy he was that day.

I tell you this story, not only because of how proud I was of my daughter that day, but because that fear I had of having a stroke doesn't compare to what an FTD patient experiences. Some days, we can not even figure out ourselves what our brain is telling us, so how do we explain it to others? People see us looking, physically, as we always have. We are even often able to communicate to the point that others refuse to believe there is anything wrong with us. I cannot seem to be able to explain what I am going through to those that are around me all the time and used to know me better than I know myself.

How can I explain to anyone else how my brain is working when I cannot understand it myself? I have been having a rough time the past three days. Today, I was proud of myself that I was even able to get out of bed this morning. I was feeling that incapable of coping with things that it seemed like a true accomplishment. I have written previously about how difficult the grocery store is for me to deal with and this is the day of the week that my husband prefers to do the shopping. It is an old habit from the days when I was still working and he was retired. Sunday just happened to be the most convenient time to do it, and in his mind, it still is. He records all the sports he wants to watch, we do the shopping then when we come home, he makes some snacks and sits down and watches all the sports. Usually he is ready to go about the time I have finished the Sunday paper. When I haven't, he doesn't complain, he just paces about and gets involved in all kinds of little busy tasks and makes it apparent how anxious he is to get going. I would bet that if asked, he would not recognize that he does this.

My getting ready to go, which used to be so simple and automatic, is now broken down into tiny processes, each requiring my full concentration. I must make sure I am dressed and groomed appropriately. I must sit down with the store's flyer and my stack of coupons, think of what we are short of and come up with a list. Shopping without a complete and detailed list is out of the question. I won't even get into the stress of the actual shopping. I have talked about that often enough now. I'll bet by now you are thinking "Wow, is she ever getting picky and complaining over nothing."

I don't know how to explain to you, and those in my life, how my brain works when I don't understand it myself. (I keep repeating that, don't I?) That's why I think of this little three-year-old understanding this older stroke victim. How do you get past people's preconceived notions enough that they can understand? Sometimes, I seem to be able to explain it with individual episodes and they realize why I reacted in a certain way (usually by lashing out), but they can't seem to "get it" all the time, before it gets to be too much for me to handle and I do lash out or break down.

My husband? Even though he cannot understand, he did eventually realize I couldn't handle shopping today and offered to go alone, and did a good job of it. God bless him for sticking with me!

The only people I have found who truly understand are the other unlucky FTD sufferers on my favorite online support group. They totally get it, because they are also living it. Guess what? They don't seem to be able to get anyone else to understand either. So, at least I am not alone. Maybe I should find some three year old children who can translate for me.