Learning to live with a disability

This is what my doctor says, "Don't expect anything for six months".  WHAT?  SIX MONTHS?  Yet, she can say I most likely won't regain vision in my right eye. And when I call on the phone to ask the nurse a question and she asks if I am still having dizziness and balance issues, she replies "Oh, Im so sorry" when I respond "yes".  So, where is six months there? I am beginning to realize, 3 months from my first onset, that this is as good as its going to get.  Yes, I can walk around, I can take care of myself, make dinner, take partial care of my children, etc... and I appear normal.  Everyone says I look great.  Inside, I am not.  I am weak, uncoordinated(you should see me at night ricocheting off the walls trying to get to the bathroom), fatigue easy, I cannot see out of my right eye, the entire right side of my face is numb including my tongue.  When I  raise my voice or talk passionately or at length about something my tongue just about gets paralyzed  and I have to speak slow and be sure to pronounciate  clearly.  I am realizing,  I have a  disability.  I have my handicapped pass for my car.  Ive filled out my disability forms.  I think that's the hardest part, coming to grips that you will never be 100%.  There are things I will not be able to do.  Things I have to cross off my bucket list.
   Another challenging part is to remain positive, yet realistic.  The positivity is for every one else.  God forbid they see you in despair or hear words like 'never' or 'cant'.  They would have such pity on you, they would be heartbroken, they wouldn't be able to sleep at night.  So, you smile and nod and say all the happy words.  I do admit I have an advantage.  As my blog is named, I have a beautiful life.  I live in a wonderful house, neighborhood, community.  I have a wonderful church and friends and family.  I have incredible parents, a loving husband and 3 amazing children.  I don't owe anything to anyone (except medical bills and a few payments on my old mini van in the driveway).  Like Ive said before, other than future financial concerns, my life is so full, so blessed, so beautiful that I am OK with this part being taken.  I definitely know a lot of people, handi-capped and not, that are not so fortunate.  The realistic part is for me, to prevent me from being overly positive.
    The next obstacle to realization of disability is what assistive aids you need. Luckily, at the present time, I only need a wheelchair here and there.  I use it around the house mostly, when I'm tired or when I want to conserve my energy.  I paddle around in it back and forth, usually with a small happy traveler on my lap!  It comes in handy when I have to lean down to pick something up off the floor, because my balance isn't so good doing that while standing.  So, at home I am comfortable with it.  Going out is another story.  We tote it around in the car and I feel like we are flying  with one of those aerial banners that says "DISABLED". 
   When I have to use it, I'm happiest with a child on my lap.  It makes me feel useful.  I'm learning that even handicapped accessible places aren't so easily accessible.  The cracks in the pavement or spaces between pavement and walkways suck in my front wheels and leave me stuck until my "pusher" pulls me out and turns me around backwards so the back wheels go first.  Then they continue to push me, like an infant, to my destination. I haven't even mentioned the looks.  Most people with wheel chairs, or assistive devices LOOK disabled, but as I said, I look fine.  So, people take extra long to look.  Do they think I am lazy?  That I want to be pushed around?
  Ive got to give the other handicapped people out there a whole ton of credit.  It takes a lot.  My comfort place is home.  I love it here.  I am at ease.  Friends ask all the time if I want to get out, go to the movies, to church, to their party????  So I can make a fool of myself by stumbling over uneven ground? Maneuver opening a door and going down a step? Dealing with the heat or cold?  Have someone approach me on my right side and try to talk to me when I cant even see then or know who it is?  Then, additionally, comes the kids.  How am I supposed to watch them away from home and make sure they are safe?  I surely cant run after them.  So, If you wonder if I want to escape from my house, I don't.  If you really want to see how I am or spend some time with me, stop by for a visit.  I'm just about always here and love short visits from friends in between or after my therapy sessions.
Most of all I love watching my children play here at home, get lost in my cooking magazines, for my plants and, well, keep up on my blog.  Soon, hopefully, it will be easier as I will have an ipad to help me out, as the keyboard still is not quite user friendly to me.  Im very excited about my new purchase and continually checking the tracking info online to get the latest stats on delivery.
  I have made some progress out in the community and though I am not playing the role I would have liked to live up to with the Goshen Summer Market, I am attending and selling my homemade goatsmilk soaps.

I also have made it down to the lake/beach here in our neighborhood to watch the kids enjoy the beach.

Despite all our accomplishments this week, we did have a tremendous hole put in our lives.  We had to make the ever so difficult decision to say good bye to our Annie.  She came to us in need of love and support and ended up giving that to us.  I, as I am sure Al does too, miss her more than I thought I would.

It will never take her place, but may have opened a new door for us.  Al and I have always wanted to train a service dog.  Well, a service dog may be just what I could use.  Their dogs are taught to retrieve items, open doors, activate light switches, pull wheelchairs, balance, brace, and perform many other highly specialized tasks through the ECADemy© training program.  This  place I found, and really like, East Coast Assistance Dogs has a waiting list of a year and a half.  By then, I will either really need it...or not!!

After all, that is beyond my six month mark!!

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