Have you ever wondered what is like to live a life knowing that as each day passes, you might be losing some physical or mental abilities you once had? Gain perspective on this experience with this question.

Think about that, I mean, really think about what that would mean to you personally.  How would your life change and how would you feel about how others see you? 

Yes, that is an almost impossible task, unless you, or a loved one, are living that life.  It is just too hard to REALLY comprehend until that is your reality.  Personally, I must continually try not to feel sorry for myself.  That mindset of self-pity is just not something that I will accept.  Of course, inevitably, as with everyone with a rare condition, “Why me” begins to ring in my head.

When I was 28 years old, I was diagnosed with Ataxia.  It is something I was born with but didn’t realize anything was wrong until that diagnosis.  Balance and coordination were always my issues growing up.  I didn’t even think there was anything wrong since that is the only way I knew.  I thought everyone struggled with balance, to some degree. 

Everyone, including myself, thought I grew too tall, too fast. 

I do remember having challenges with stairs growing up.  Specifically going down the stairs.  I used to get so excited when my feet would hit every stair and I could do it fast.  I could not always do it, so when I could, it was such an exhilarating feeling!  One of the other events that I remember is in 8th grade.  Or I should say, preparing for that 8th-grade year. 

I severely broke my wrist the day before school started and that eventually made my choice for me.  That was the year I was planning to play football.  But my biggest worry was not the physicality, but it was the practice drills, specifically the tires.  I knew that I could not do the required activity and that stressed me out.  So, when I broke my arm, the decision was made for me.  And after that, I didn’t give it much more thought.


It is a very simple concept.   And in my opinion, everything in life is perspective.  Are you going to have a good day or a bad one?  That choice is up to you and not anyone else.  Internal change only happens when we take responsibility for our own actions.  There is no one to blame, so just focus on what you can do.

Too many of us, and that includes me, let outside factors dictate how we are going to feel and act.  It’s human nature but when you look at the situation from the outside, those issues are usually, not that big.  Yes, I am talking in general here, because sometimes, these challenges are life-threatening.  

No one can avoid all these obstacles.

Obstacles are a part of life and sometimes, the thing that makes life worth living.  How boring would it be if everyone was the same?  You need to make a determined choice to not let it into your head.

Over the years since my diagnosis and every year as it progresses, people tell me how well-adjusted I am to what is happening to me.  “You never let it bother you.” Or “If I had that pain, I would be angry all the time.”  I hear those words and am never quite sure what to do with them.  I have never been able to completely internalize it.  There is always that internal voice telling me that I can do more! 

I’ll let you into a little secret.  Remember my statement above, “Why me?”  That question is always bouncing around between my ears.  I must make a choice every day.  If I let my situation stop me or start thinking my life is out of control, it will be.

“My advice to other disabled people would be, to concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with.  Don’t be disabled in spirit as well as physically.” 

Stephen Hawking

Choose to live as if there is nothing wrong.

I choose to live every day doing what I can to stop the progression.  Or at the very least, slow it down.  I want to live as close to the life I imagined growing up!  We all need to remember that version of ourselves.  The one that had big goals and even bigger dreams.

Currently, there is no treatment or cure for my individual form.  It will continue to progress, and I have no control over the extent.  But what I can control is how I think and act. I will describe in future articles what I am personally doing to improve my physical and mental abilities.  Powerful things can happen if you just start to take steps toward improvement.

I am not giving up and neither should you!  If you or any of your loved ones are in a similar situation, whatever the condition or diagnosis, focus on what you can control.  Start now and make small improvements every day.  Once you start to train yourself, the happy times will far outweigh the difficult ones!

Related Posts

Leave a Reply

My New Stories

Ataxia Patient Registry
Relaxing Evening
Yesenia Ramos Journey
wheelchairs are not embarrassing
Respect for Mobility Aids