Nana don't...........anymore!

Safety is more than just a word, it's a way of life for this Nana. (My precious grand boys call me, Nana)  I am in pretty good shape, but a fall with a hit on the head could be catastrophic .  Because of this my daily rituals have changed, somewhat. There are things that Nana just won't do anymore.  Nana don't play!

I love candles: the look, the glow, the smell.  If your house is bathed in the warm glow of candlelight even the biggest messes will be overlooked.   However, I don't think it's smart for me to be working with an open flame.  Nana doesn't want 3rd degree burns, so now Nana uses flameless candles.  They're a great substitute for the real thing, but I do miss the smell.

One of my favorite things to do is cook.  I could spend hours preparing great meals for my family. My cooking routine has changed somewhat since it's harder to carry hot pans safely. Especially pans of boiling water. Ouch!   So whether I'm making pasta or boiling a lobster, now I wait till someone in my family can carry the pan.  Nana doesn't want to be painfully red as a lobster!

When it comes to vertical height let's just say that I got left out.   I'm very short so many times things are out of my reach.  In the past I would just whip out my trusty old step stool, but now............NOT!  I could see myself getting dizzy and falling off.   It truly is the recipe for disaster! We tried to arrange our home where the things I use are in easy reach, and if that doesn't work I just yell, Someone Help Me!

So this Nana plays it safe!  With a disability you can still achieve your goals, you just have to   approach them in a different way.

What changes did you make?

Please Sir, may I have some more?

There are days I still feel like this!

During my tenure as a disabled person I have met many wonderful people.  There are so many out there who are patient, respectful, and kind.  From opening doors, to giving up their seats,  I have had such kindness shown to me on many occasions, and for this I am very thankful. 

There however have been a few times when I have come across people that are hateful, to say the least.  When I encounter a person like that I think of the phrase from Oliver, " Please Sir, may I have some more?"  That phrase fits perfectly because , "WHAT DO THEY WANT FROM ME?"   If you feel like acting like a total jerk just give me all you've got! 

!. To the man who watched me going  to my parking spot and became very exasperated at my slow pace, your impatience only makes me go slower.  I get nervous when I rush!  I hope the fit you were throwing made your day brighter.  So to you I want to say;

2. To the man who was on the bus with me and my husband,  your behavior towards my slowness was totally inappropriate.  I can only go so fast!  My husband and I were having a wonderful date night.  You were lucky by the way, my husband nearly decked you!  Do you honestly think by  talking out loud about the slow woman would make me move faster?  It actually made me much slower.  Well sir, to you I have to say:

 I hope they someday realize that being disabled was not my choice.  I would love to be able to move quickly, but that is not in the cards for me.  

Wow!  I have only two experiences that stand out in my mind.  That's not too bad! 

Have you had experiences like these? 

A Different Me!

In life we are in a constant state of change, not just physical changes but emotional changes as well, and let's not forget the soul. 

Dystonic muscles were not always a part of my life.  I could walk, jump, run and scamper with the best of them.  Little hints of what to come were there but not recognized as a future nemesis.   For the most part the body gave what it was supposed to, and I accepted the rewards without question.  I made it through the teen years, worked, and had lots of fun in between.  Next came the married with kids years, where I am very thankful that I was able to raise me kids without my mobility disorder plaguing me.  

Once it was confirmed that there was a neuromuscular problem, something in me changed.   My persona became different and at times unrecognizable.  In the early years I was outgoing by nature, never meeting a stranger, and in truth I probably scared many away with my constant chatter.  I lived life out in the open, always ready for some fun.  However, when my symptoms began my personality began to change as well.  With each stumble and fall, a small fraction of me changed with my confidence level starting to wane.  I became aware of crowds,  and I felt embarrassed to walk in front of them.   The first time that happened I was totally shocked.  I was a person who in her former life could talk to a crowd of a thousand people without any problem.  With each phase of my disease I changed a little more.  I used to love to go to Starbucks and get a treat, but when I'm in between Botox shots for my voice I shy away.  My husband tells me to just drive up and tell them what I want, but that's easier said than done.  I am now shy, and I worry what others will think.  I know I shouldn't, but I do!

With my mind and body changing another part has changed as well, my soul.  My soul is who I am, good or bad.  The inner me now looks at life a bit differently.  I treasure every moment of this beautiful world, and I thank God for letting me live in the time of medical miracles.  No longer do I worry and stress about the small stuff.  I am more empathetic towards people and less judgmental.  I am in no way thankful for my disease!  I would much rather be healthy, but my disease has forever changed me; mind, body, and soul.

How have you been changed?