I describe myself as "emotionally numb" more and more these days. Much of that is just a condition of the FTD. The worst part of that is that, more often than not, I feel as though I just need to have a good cry and get it all out. Unfortunately, FTD does not allow me to do that due to it killing off most of the empathy I used to have.
This morning, though, I realized that in addition to being numb, I also feel like an empty shell. Almost all decision making power has been taken away from me, aside from deciding what to fix for dinner. I haven't been allowed to drive for about five years now. Until that privilege is taken from you, there is no way of understanding what that does to you. It is almost like part of your being has been ripped away. Don't get me wrong, I realize that I have no business driving. I get lost constantly and narrowly escaped causing some pretty severe accidents the final year of my driving. It is just that it steals much of the spontaneity from my life. I can no longer hop in the car and run to the store if I need something. If I'm bored, I can't just hop in the car and go visit someone. I must schedule all of my appointments and activities around someone else's schedule so that I can get a ride. For every thing not within the walls of our home, I am always dependent on someone else. Having always been a fiercely independent person, it is really tough to accept. I have missed so many events... showers, weddings, parties, funerals... and it hurts to let people down.
Sometimes it is mostly me who gets hurt by this. We were supposed to go on a vacation next month to Myrtle Beach SC and our daughter was going to meet us there for the week. I haven't seen her since Christmas, so it's been a long nine months. Unfortunately, my husband decided he did not want to go. It used to be a common occurrence for him to not be able to make a family trip, so my daughter and I got used to just packing up and taking off on our own. Now that she and I live a few states apart, it makes it much more difficult to do. Bottom line, vacation is a no-go. So, I wait until Christmas time again to see our daughter. Somehow, once a year is not nearly enough. Yes, I could find someone else to join us and do the driving in exchange for a free trip to the beach, but that totally defeats the purpose of having some quality family time with just the three of us.
This isn't just a case of me pouting because I don't get to go on vacation again this year, just like the past few years. It is more that this disease does not come with a calendar. I have no idea if it will end my life within the next year or in five years. Most of the research that I have seen says, 5 -10 years after diagnosis. I was diagnosed about five years ago, so as more and more symptoms rear their ugly heads or others worsen, it forces me to face reality. For me, it makes me want to do things like see family as often as I can. For instance, this summer I was able to get together with cousins from both sides of my family. This doesn't happen often because we are all spread across the country now. It meant so much to me to be able to do this. Many of those that I know with FTD actually have "bucket lists" of things that they want to do before it is too late. I have one thing on mine: spend as much time as I can with family. Along with that, I do include moving to North Carolina to be near my daughter. But, all these things depend on someone else making the decisions needed to do these things.
Bottom line, I am tired of being empty and numb. Song lyrics keep popping into my head: Comfortably Numb which then leads into Should I stay or should I go now...
I never would have envisioned these words to describe my life, not in a million years, until FTD came to call...
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