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?

 

 

 

The Suck List!

We are always looking for the perfect words to adequately describe situations in our lives.  Our brains search through tons of words to come up with just the right adjective to put a mental image with our words.  There are times that things are just so bad, so horrible, so disgusting, and so unbelievable that the only words that will do are...............This Sucks!

A dear friend of mine explained  that when her children were young she wouldn't let them say suck!  She believed it was an inappropriate word for a young child, however when her children became teenagers that changed.   Her teenagers had to help with a cleaning project that was disgusting to say the least.   My friend told them, " Sometimes all you can do with something sucky is to define it and put it on a list!"   That's how, "The Suck List," was born.  To this day her family still puts things on the list that truly suck to them.

So I'm going to start my own, " Suck List," to give proper attention to those moments in my life that really, "Suck!"  I will be deliberate with my list, as not everything that happens in my life deserves such a catchy phrase. 

Hmmmmm........what should I put on my list? 

1. Well , the first item on my list is, standardized testing.   I am a former teacher forced to retire due to my disability.    When I did teach I had to gave standardized tests to my students. The students got so nervous on that day.  They could do nothing the entire day but test, and I could do nothing but actively monitor every torturous moment.   The whole day I wished that I could be teaching my precious students.   Don't get me wrong, I do believe that students need to be assessed and teachers need to be accountable for their teaching, but standardized testing, "That Sucks!"  

2.  This is gross, but sometimes my cat pukes up fur balls that would rival Donald Trump's comb over.   In fact you might swear it was his actual hair laying on the floor.   When I wake up in the morning and have to face that staring up at me from the floor........."That Sucks!"

This is kind of fun so let me list some more.

3. When I try to walk like I'm not disabled, I end up looking like I'm a drunken sailor, "That Sucks!"

4. When my grandson wants me to run and jump with him, and my disability keeps me from it, "That Sucks!"

On and on I could go, but I'll stop there.  Just remember when you are looking for just the right words to define a moment in your life, sometimes there is absolutely no better words than, "That Sucks!"

What would you put on your list?

Embracing the life that we have been given!

Do you remember when you got your diagnosis? Maybe you remember everything about that day. Like what you were wearing, what the weather was like, or what you had for dinner. For some of you it may have been like falling off a cliff and never reaching bottom, A nightmare that became reality.  Many of us have a common thread that runs through our bodies, unfortunately, our thread started to ravel and became the disease we live with today .

Focus on the positive

My disease was not exactly a surprise. You see, my sister had been diagnosed in 1996. After a misdiagnosis of Parkinson’s disease she was eventually properly diagnosed with Hereditary Neuropathy. You would think her diagnosis would have made mine a breeze to accept. Not exactly! If anything it made me run scared from any trip, fall, muscle twitch, muscle cramp or really any malady. I did not want to accept that I was losing the genetic crapshoot. My life would forever change with that roll.

That’s it my friends! We need to focus on what we have, not what we have lost. What we can do, not what we can’t!

That is why I am starting this blog, to reach others and let everyone know that we are going to be fine, yes, life does become difficult many times, but if you’re anything like me you just roll with the punches.

I am a certified teacher, but I had to give up my position due to my disease. Teaching became way to difficult to navigate my body through the course of the day. The part that really stinks is, I loved teaching. I truly enjoyed instructing my students in their academic content but also teaching life lessons.

After that experience I embraced my life in a new way. No one would choose to be disabled, but since I am and I have only one life, I’m going to make it count. I’m going to Rock That Cane and let the world know I’m here.

Dawn - Rock the Cane