"Strength does not come from physical capacity. It comes from an indomitable will."
Mahatma Gandhi

Sunday, May 4, 2014

LIFE WITH AN MS BRAIN

Life is an interesting activity.  We all have our challenges.  Somehow we all push on an adjust.  

In addition to the physical challenges of MS, I have what I call "MS Brain."  A lot of folks do not know that MS can make you really, really slow and stupid.  It can.  Significant cognitive loss is not part of everyone's MS, it is a part of "mine."  It has altered my life in many ways, but has not stopped me.  In the past year I've gotten a bit dumber, but that's just made me more creative in finding coping skills.  

I push on and I adjust.  Some of my adjustments are hysterical, but they work.  Everything in our house has to stay in the same spot, because if I go to a spot to retrieve an item and it is not there, I will not take the time or energy to find it, it's just too difficult.  There's some things in really weird places, but I know that they are there, and that works for me.  Rubber bands hang on the antenna of the kitchen wall phone, bread ties on the left of the kitchen window sill, my Swiss Army knife in the kitchen drawer closest to the stove, the can opener has to be in with the silverware.  That's a small sampling.  I'm sure Dave wants to move a thing or two around to places that are more logical to his mind, but he puts up with the arrangements I've got going on, because not to can put me into a rage.  I'll blame that on MS too.  

If you want to tell me a story about time place movement, you'd better have a pencil and paper in hand.  I can fully understand a sketch, I can not always understand the spoken word.  And, if you are telling me this story or drawing me this picture in a spot where there is background noise, never mind, because it will not get through to me a bit.  If the TV is on too long, my brain turns into scrambled eggs.  I do not drive more than about 1 mile, and for a couple of years didn't drive at all.  I had to reclaim some independence, though, and so am on the road only at certain times of the day and never drive in the afternoon or after dark.  And, I do not take left hand turns.  I can negotiate my entire circle of freedom by making only right hand turns.  I'm afraid to give you any more details of the things I do or don't do, because some of them are downright scary, even worse than the never taking left hand turns.  

In the sewing room, the best invention for MS Brain is the sticky note.  I use them by the hundreds, especially in the sewing room.  

Right now I've got all the parts made for Paul's batik quilt.  Easy parts, 4 patches and 1/2 square triangles, but all composed from 20 different fabrics and I can't remember the name or number of a fabric while walking from one side of my sewing room to the other… about 5 feet.  So, first the parts are on my cutting table, with sticky notes attached, identifying the color numbers of that pile of parts.  I'm guessing we all do this, right?  
 When I went to start arranging the parts on my design wall, having to put the rows vertical since my wall is a bit narrow, that's when it all fell apart.  I could not pick the parts from the table and walk to the design wall and remember what the heck I had in my hands.  

So, as you see, on the left of the design wall is a sample of all 20 fabrics, with their numbers and names pinned to them on a sticky note.  In the middle is the design pattern, and to the right are the first two rows.  I take the pattern to the cutting table and pull the parts for the row.  I return to the wall and have no idea what I've got, so have to refer to the design chart as to what parts go in what order facing what way, and refer to the sample fabrics to identify the parts.  My system works.  
So, if you come across someone in your life who has MS, be understanding when they hand you a paper and pencil and say "draw me a picture."  Women are visual learners anyway, so maybe I'm just being a girl.  

7 comments:

  1. Oh Angela you constantly amaze me! Your coping skills are inspiring and I know the quilt will be beautiful!! You go girl!!!
    Hugs,
    Rose

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  2. ...and a very, very strong inspirational girl! Thanks for this peek into your challenging world.

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  3. OK, I'm scared. I don't have MS and although I can take left turns, and my thought process (or no thought process) is not as extensive...it's similar. I'm going to say it's because you are a girl, and are creative and then, you have MS.

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  4. I think I need to try the post it note thing myself. Love you

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  5. You do what you gotta do -- & I agree -- the post-it note is a great idea.

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  6. Wow! You are amazing...I so admire that you don't give up. I did not know this about MS....

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    1. Thanks Rose! And that I have educated with this post makes it all worthwhile! Most people don't have any idea that MS slows down not only the body but the mind, in some patients.

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Some day, I’d like the memory of me to be a happy one, I’d like to leave an afterglow of smiles when life is done. I’d like to leave an echo whispering softly down the ways, of happy times and laughing times and bright and sunny days.