Someone said in jest, "I hate those people who are always happy."It made me think about the dark side of my disease and how I don't talk about it on my blog. The fears and tears.
There are days when I worry. "What will I do if I can't stand any longer?" I feel helpless.
I've learned to reach out and ask--not harbor my concerns. I ask Care Aides, OTs, ALS pals online, friends, doctors--anyone who I think may have some suggestions. That's where I got the knowledge about a "sit to stand" lift. For me it has become one of my favorite aids. Can you imagine the joy of standing upright and feeling tall once again? Just to stretch my legs is wonderful.
I used to fear the day when I lose my voice. How could I butt in like usual when using a speech machine? Aha!--problem solved. I can ring a bell or push the call button on my power chair. Now some of my friends talk so much when we get together I'll probably just learn to relax and become a better listener. I can hear some of you saying, "yeah right, like that is ever going to happen." And you are probably right, I'll be ringing that bell!!
So, don't ever think I'm always in denial(but it is a good way to spend some days), I have fears and tears like anyone else. However, I always find solutions to my problems by asking the circle of many wonderful friends and professionals in my life.
I can't change the fact that I'm going to die, I can only try to get the most out of the days I have.
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