Thursday, October 6, 2011

Diagnosis - Perspective

For the first two weeks after my diagnosis of ALS, I awoke every morning thinking: "I have ALS, I'm going to die." But I could not go on like that and my native happy temperament had to come back. After I made a bargain with God that I would pray everyday to know who I could serve, I came to feel a peacefulness again in my life. I have since revised that prayer to include making memories with my family or accomplishing something important each day. I now awake every morning thankful for a new day and to be able to accomplish things during this day.

That having been said here are some things I can't do any more:

I can't talk well, and I eat slowly - which is sad, because these were two of my BEST things! Additionally, I have to feel guilty about losing weight - that's hard to wrap my mind around!

I can't sing, which is a real sadness to me, not that I had a great voice, but I did love singing in the choir at church and I loved going to the Messiah Sing-in. I'm not sure whether I'll go this year, it might just make me sad. Maybe next year . . .

I send my husband's clothes to the cleaners. I liked ironing. I like taking things from chaos to order. But Rich helped me realize that I could be crocheting baby blankets for future grandchildren was a better use of the time it takes me to iron all his shirts and pants, and so I chose the more important thing. The blankets I make for grandchildren will be more cherished than my hours spent ironing.

I sleep with a mask - so attractive! But my new bipap machine is a lifesaver. I sleep better and get more rested. And a study in Europe said that the sooner patients with ALS get on a bipap machine, the longer they live. I'm all for that!

I have trouble using scissors. Since my left hand is now stronger than my right hand and that's a little weird. But thankfully I'm still able to do most things I want by using both hands.

Every once in awhile I have a day when I'm really sad about the things that I have lost. I mourn for them. But then I remember that there are still so many things that I can do. I can type and use my computer. I can use my iphone to text and keep in touch with people. I can read. I can walk Annie every day. I can work at the temple. I can take care of my home. I can scrapbook and I'm getting caught up on my goals. I can still write even with weak hands. I can hug my husband and family.

It's all good!

3 comments:

Jeanette Cox said...

You are an amazing Women. I think everyone around you can feel your love by you just being you. My prayers are always with you.

Rachel said...

Janet,

I just came to your blog from your comment on mine and learned of your diagnosis. I am incredibly sorry for the grief you and your family are going through. You have a great perspective and so many people praying for you....add me to the list. I'm happy that the October earrings were perfect for today. ;) Keep smiling! ---Rachel

Melissa said...

you are amazing and so inspiring!