I don’t have a crystal ball!

So, I was talking to a friend, Ruthie the other day and she asked me a question I’ve heard in several versions. What happens with ALS? Man, I wish I knew!

ALS is a neuro-muscular disorder in which the brain no longer has a good signal with the extremities. Some people with ALS start to lose sensation in the head and neck area, showing problems with swallowing.  Some others lose their sense of balance or coordination.  Some develop paralysis starting from the feet and working its way up while others have paralysis that follows a different pattern.  I’ve been told there’s no singular pattern and no way to predict the speed at which things will change.

Here’s a great resource: Your ALS Guide – Your ALS Guide – Your guide to living with ALS

If I had a crystal ball, I would want to know more than just the progression of the illness.  I would want to know what people think when they see me changing.  I would want to know what to expect when I go to certain places.  I’m like a lot of other people who want to feel comfortable and safe in my surroundings.

We all have a tendency to think we know what’s going to happen.  We think we can predict fairly accurately what we need to say or do in certain situations.  We learn from our history what to expect in the future.  We act in a way that supports our beliefs.  We have schemas about how things are going to happen and how they should be.  These schemas can be about anything, how you make coffee in the morning.  How you go to work.  How you put on your socks and shoes.  Anything you do with repetition involves a schema that you have learned as a way to predict your world and feel comfortable in it.  Disruptions to your schemas produce a lot of emotion.

I had a schema for retirement.  I thought it was going to be pretty casual, taking things as they come up, visiting with family, going fishing, traveling, doing some gardening, sewing, and jewelry-making.  My entire retirement plan was to turn off my alarm clock!  And be free!  Well, the alarm clock is off and I am free. Now I’m learning to rebuild the schema for retirement, and pay attention to my emotional reaction to these changes.

Quite frankly, it’s emotionally challenging.  If I had a crystal ball I would know what to expect.  I would like to think I would react better with information, but that may not be true.  What I’ve decided to do, and continue deciding every moment, is to radically accept the situation I’m in and then do the best I can, moment by moment.

I’ve stepped into a world I have not planned for. If I had a crystal ball I would map out this journey nice and neat, but that’s not going to happen. We’re going to have to roll with it!