I don't know if I have ever mentioned how much I dislike talking on the phone.... and making phone calls? Forget it. There are, however, a handful of people that I would always take their phone calls and be thrilled that they called. Interesting enough, these are the same small group of people that I enjoy calling You can count them on one hand.
Late one evening this past week, the phone rang and I looked at the caller ID and it was one of these people. It was late enough that I was not very thrilled to have to talk because the later in the day, the more difficulty I have in getting my words out. Fortunately, for this handful of people, I would never ignore their calls... night or day, anytime.
The one who called me was not crying, but I could tell that she was on the verge. She is currently battling a very persistent cancer. We thought she had beat it last year, but up it jumped again, saying "Nah, Nah, Nah, Nah," and sticking out its tongue. Well, that is how I picture it anyway. She knows I had my own battle with cancer a few years ago and that I understand the toll chemo and radiation take on your body and your psyche. She also understand what I am going through with the FTD battle. I am honored that she chose me to call.
Her question to me was, quite simply, "How do you do it? How do you keep a positive attitude?" I paused for a bit and than answered "Some days you don't." Isn't that the truth? Some days it just seems not worth the effort and everything looks dismal. But... I continued, "Other days you find something positive. Sometimes it jumps out at you, like a beautiful bird at your window or someone being extra nice to you or paying you a compliment." I took it even further and said, "Sometimes you have to really search for something good... read a silly book, watch a silly tv show. Ask someone for a hug. And finally, call me, day or night, I will always be here to give you a laugh or at least a big smile and tell you how much I love you." Yes, I do believe you can hear a smile over the phone.
When I was training people in whatever office I was working in at the time, I always told them to take a second and smile before you answer the phone. It makes a big difference: in your attitude, in the reaction of the one calling and sometimes makes a big difference in the results of the call. Try it sometime.
By time we finished the call, and it wasn't even as long as our usual talk-fests, she sounded so much better. I think that part of why it helped her was that I didn't offer platitudes and say things like "It will be okay, you will beat this" and didn't try to compare it to my experience. No two cases are the same and everyone's body reacts just a big differently. I will say that she was amazing going through the battle the first time, and is staying as strong as possible this time.
I strongly believe that keeping a positive attitude, or at least trying to, not only helps you with the treatment, but also with the results. It fills you with positive energy instead of negative energy. I don't always succeed, I can have a few down days here or there, especially when crappy things are happening in my life, not necessarily related to FTD.
That is one of the reasons that, even though I know FTD is a terminal disease, I keep fighting. Not only to keep my own spirits up, but to keep attempting to inform as many people as possible about FTD. I write this blog, not only because it helps me to get my feelings out, but if it reaches just one person and gives them enough knowledge that they say "Hey, maybe that's what is wrong with me (or their loved one)." I also, every time I see a doctor I talk about it. Not only my family doctor or neuropsychiatrist or my therapist, but also my dentist, my eye specialists the ER doctor, any captive audience. I offer to bring them information and some of them actually take me up on it and I can tell at my next visit that they actually read it. Again, if this leads to just one correct diagnosis for someone, it is more than worth the effort.
It is much easier to fight the battle with FTD if you have a correct diagnosis and become informed about the disease. It is toughest on those who are told "It's just depression" or "You are too young for Alzheimer's" and on and on. Trying to function when you are screaming inside, and sometimes out loud, "IT IS NOT DEPRESSION! I may be depressed, but it's from fighting the problem, not the cause of it," can totally exhaust you and make it very difficult to keep any kind of positive attitude.
That late evening phone call, when she couldn't deal with things, was a gift to me. To think that she loves me enough to share her inner feelings and trust me enough to try to help her through it? Now that made for a more positive day for both of us!
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