I have only two fears that cause me to pause in my battle against ALS. The first is the decision to go on a breathing machine or not. The second fear is the inability to communicate. My fear is that I will not be able to say something hurts, that I need to use the bathroom or what I'd like to eat. Every decision will be made for me and I will lose control over my daily life.
I've been slurring my speech for at least 12yrs because my tongue muscles are shrinking. When I use the phone to check on bills or repairs many people are rude, thinking I'm drunk or high. My slur has progressed, but if I'm chatting face to face and you know I slur there is no problem. Over the phone it gets more difficult but like I said if you know, it's easier because my friends listen harder. People are not always good listeners because they are thinking more about what they are going to say next. The only time I get irritated is when people pretend they understood what I said when they didn't. I'd rather be asked "say that again?" because it validates that someone cares what I'm saying.
I must confess I get down right pissy if Dave or my girl's pretend or ask "what?" when I know I was clear. They are around me so often they understand me really well and even act as interpreters in public. If I get a "what?" I repeat it loudly with attitude. I know it's not right but I hate "selective hearing" from those who understand me. Some men and children have perfected this technique in families. It's my biggest fear that what if the people closest to me stop understanding me and what will happen to my life. Will I be ignored or will they pretend to understand my body language? Get frustrated and leave my control to a caregiver of their choosing? These are unrealistic fears because I have Dave, but he is human and has limits. Being a caregiver and caregiver coordinator is a daunting task. Dave is my rock and loves me but he can't do it alone.
I'm communicating like crazy, right now, so my body language and preferences are known by heart. I will never give my power away and if I did I would no longer exist. My eye's have been my parenting tool and love speakers for years, so I pray they will continue to communicate for me. We all could listen and communicate better with loved ones, including me, right now. I still can't communicate with my dad or tell my brother I love him. They would get very uncomfortable. If we say what we feel to those we love instead of surface conversations things would get real and hurts healed. TK thinks his real name is "Gramy Loves You TK" because I say it over and over just in case he gets older and never hears the words.