It is nearly impossible for those without FTD to fully understand that our questionable actions are almost always caused, or at least triggered, by our FTD. With no impulse control and no empathy or sympathy or even just thinking about others first, we have done things that we would have never done before the disease took over. I keep saying "we" because I know that it is definitely true for me and have talked to or read about enough others who have said the same thing.
Sometimes, after the fact, I will realize what I have done and be appalled at my actions. When that happens, I am able to apologize, but most of these things are so repulsive that no apology is going to make much difference. Unfortunately, this part of FTD is difficult to explain and for the people around us to fully understand.
I can remember a few movies that involved someone's body being taken over by something or someone extremely evil. Most of the movies have been horror stories. These movies give me the best way that I can explain FTD and the ways I behave. When I am aware of the things I have done or said, I understand that I would have never, ever, done these actions before I had FTD.
It truly is like someone else has taken over my body. I never spoke so vulgarly or meanly before. I never disregarded other peoples' feelings, I rarely put myself first. I always thought about how my words or actions would affect others. This even included strangers, not just my friends and family. I know I have used this example before, but one day in the crowded grocery store, I yelled out "What the f**k are all these people doing here?" After we got home and when the stress of shopping was over, I realized what I had done. To this day, when I interact with the employees of that store, I wonder if they heard me. I wonder how little they must think of me. I absolutely had no control over what I yelled, but there is no way to explain it to anyone who doesn't understand FTD.
It isn't just speaking the horrible things, it is also actions. I compulsively purchase things that I do not need. I am obsessed with Thirty-One bags. I have a a 30" x 24" x 12" box overflowing with them. All the bags are still in the folded state they are shipped in and still in their original packaging. If our entire neighborhood decided to go on a picnic, I have enough thermal bags to pack everyone's food and enough tote bags to pack everything else. These bags are high quality and very attractive, but, come on, how many do I think I need? "Think" is the operative word in that statement. I don't think, I just buy. Some good comes from it because I end up donating them to charities and the VFW for raffle prizes and such things.
Now, I will finally get to my point. Today, I read someone's post on Facebook about how dastardly her spouse with FTD has become. All the things she describes are totally FTD. She seems to truly believe that all this is deliberate and he should be able to control himself. In fact, she stated that she avoids the support groups because the other members kept telling her that he "doesn't know what he is doing" or that "It isn't him."
I somewhat agree with her assessment of those two phrases. The one I really don't like is, "It isn't him, it's the FTD." While in essence this is true, I am still responsible for what I do, even though caused by a disease. Of course it is me doing unforgivable things and since part of my brain enables me to do what I am doing, I know it is me doing them. The other side of the coin is that I do not understand that it is wrong to say or do those things. Fortunately, I do not threaten the safety of those around me. I merely make their lives a living hell. I should know, I dragged them there right along side of me. I didn't have to go to any effort and certainly had no thought about the inherent risks or offense. The FTD demon that has taken over my brain, and killed some of the most important parts in the process, pushed me all the way there. The dead and missing parts of my brain are no longer there to filter good from evil.
I try to reduce the risks. I made the conscious decision, on my own, to stop driving. I knew I was endangering others even though I had not had an accident or hurt anyone... yet. I know I should no longer handle power tools and so far have been able to resist doing at least that. I still endanger myself. I forget to take a cane when walking through the yard and fall more often than I would if I remembered. I still burn my hands by forgetting I need to use potholders. I still stick my finger into boiling water or cooking food to see if it's hot yet.
If my brain is not capable of preventing myself from doing such stupid things, how can we blame it and its dead brain cells, for doing all the emotionally hurtful things? It is a difficult concept for those who have not experienced FTD to grasp. Those who do understand care enough to "get it" are my heroes.
Since it is Halloween week, I will go back to the horror movie, Living With FTD, is the body responsible for this person's actions, or is it the brain that has possessed the body to blame? Is it the part of the brain that is still intact, or is it the part of the brain that is nothing but dead brain cells? FTD truly is a horror story.
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