I have been complaining in my blogs lately about not being "heard." That people don't understand the illness, so they either deny there is something wrong, or get irritated at my symptoms. This includes trying to finish my sentences because I have to pause to think of the right words and when I am stuttering because I am nervous. It can also be when they get irritated because I have an awkward gait or seem to trip over my own two feet. Then there is the worst, the times people look at me and don't believe what I say, because they think since I have FTD, I must be stupid. So today, I thought I would like to talk about an occasion when this didn't happen!
A couple months ago, a cousin gave me a call. She and her sister and my sister and I were pretty when we were young, probably up until senior high or so. She had started calling me every two or three months several years back so we were keeping in touch, but we hadn't seen each other since a couple family funerals many years ago. This last phone call, she said she and her sister were coming up (they both live several states away) for Mother's Day and did we want to get together. Of course I jumped at the chance. I was comfortable getting together with the two of them, sure that they wouldn't be judging me because of my symptoms and the four of us would be just the right size of a group for my comfort.
Two days before the date, I learned that our aunt and uncle were coming too. Don't get me wrong here, it is not because I didn't want to see them, but all of sudden the group was up to six and I was starting to get anxious. Then on Saturday, we met up at a restaurant that was about halfway between where my aunt and uncle live and where my sister and I live. When they arrived at the spot, all of a sudden, our group was eight because the daughter and grandson of one of the cousins came along. I had never met her or her son, so I was ecstatic to see them, but the anxiety started kicking in.
It didn't take long to realize it was going to be okay. After lots of hugs, we settled down in a very quiet and nice restaurant. The staff knew nothing about me having FTD and not being able to handle commotion and lots of noise, yet they sat us in a back section and never did seat anyone else in that section for the hours we were there. Then again, maybe we were just too rowdy for anyone to want to sit there... nah, that couldn't be it. My family rowdy, no way! We are just "spirited."
So we were in the perfect place. They all knew about my FTD, so I didn't have to explain it. When I started talking and had to pause to think of words, they all just sat there patiently waiting for me to continue. When I stuttered, they did not react at all. I did not feel left out of any of the conversation and the anxiousness totally disappeared. I also never felt like I was being judged and being found lacking, I was still their cousin, through and through. There are two more cousins in their family who had not joined us. They are significantly younger than the four of us, so we were never very close. Maybe next time, we can include them as well. I think I could handle it! My family truly came through for me!
This is definitely a good example of how to deal with someone with FTD. Include them in family gatherings, include them in conversations and make allowances for whatever symptoms the FTD family member has. More than that, try not to be judgmental.
Oh, and my family totally rocks!!!
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