LORD IT IS SO DIFFICULT TO STAY ACTIVE

MY DEAREST LORD

TO ALL ALS SURVIVORS

HERE YE, HEAR YE!!!!

HOW DO YOU DO IT! 

 WE ARE SO DIFFERENT,
THOSE OF US WITH ALS

 YET ALL THE SAME!

 I MEAN THE WHOLE WORLD

 ARE YOU SUPPOSE TO GET A DISEASE AND GO AWAY?

  ARE YOU SUPPOSE TO GIVE UP!

 RICH SAYS HIS CEO HAD IT. 

 HE CONTINUED TO WORK 

AND THEY WANTED HIM TO,

BUT HE GAVE UP WORK.

HE WENT HOME  

AND SAT IN HIS ROOM

AND DIED!

 SO MY SON SAID KEEP GOING AS LONG AS YOU CAN!

 THEN IT IS SO DIFFICULT.

 I WENT TO SUNDAY SCHOOL, CHURCH AND 

SUNDAY NIGHT BOOK STUDY.

  

 IT WAS WONDERFUL TO BE WITH EVERYONE,

. I DON'T WANT THIS TO CHANGE. 
I WANT TO DO THIS FOREVER.

 BUT LORD IT IS SO DIFFICULT TO BE.

 IT IS SO DIFFICULT TO BE IN A DIFFERENT PLACE.

 IF IT WAS NOT FOR KELLY LAST NIGHT,
I WOULD HAVE LEFT BECAUSE,

 I COULD NOT BREATHE!

 LIVING IN THE TENSION IS DIFFICULT.

 KELLY WAS LIKE A COMIC RELIEF. 

IT WAS NOT FUNNY,
BUT WHEN I GOT IN TROUBLE TALKING AND QUIT-------

  KELLY,
ALWAYS POIGNANTLY FOLLOWED WITH A STATEMENT THAT SEEMED TO

COINCIDE NICELY WITH WHAT I WAS SAYING.

 NOT AN INTERPRETATION BUT EASILY RELATED. 

 TO ME IT MEANT SHE UNDERSTOOD WHAT I WAS SAYING 

 WHICH IN ITSELF IS A TASK.

 IT WAS A TRUE HELP IN ME NOT WALKING OUT ON MANY OF OCCASIONS.

YOU SEE,
LORD,
I FEEL I AM INFLICTING MY DISEASE ON OTHERS.

 LORD,

I DID NOT ASK FOR THIS DISEASE AND KNOW ONE ELSE WITH ALS DID.

 YET,
AT THE ALS MEETING MOST OF THEM
WERE NOT PARTICIPATING WITH OTHERS

 OUTSIDE THEIR CARE GIVERS. 

 I AM QUITE A UNIQUE BIRD.

 I STILL WANT TO STAY THE SAME AND NOT STOP PARTICIPATING.

I STILL WANT TO GET TO THINGS,
EVEN IF I HAVE TO BE DRAGGED THERE.

 I HAVE ALWAYS BEEN A CREATURE WITH OTHERS.

 I HAVE BEEN ACTIVE AND LOVED OTHERS.

 I LOVE TO EXCHANGE IDEAS AND LEARN AND DISCUSS

YOU LEARN 10 TIMES AS MUCH FROM OTHERS AND IT IS REAL.

 IT IS NOT TV OR A BOOK,

 OF COURSE YOU CAN LEARN FROM THOSE, 

 BUT YOU CAN LEARN THE REAL STUFF FROM OTHERS. 

 YOUR CHILDREN ARE SO WONDERFUL

 YOU CREATED US TO BE RELATIONAL,

I AM AFRAID THIS ALS 

 IS MAKING ME DOUBT MY PLACE IN IT ALL.

 DO I STILL HAVE STUFF TO GIVE,

  

 I KNOW I TAKE AWAY MORE THAN I GIVE.

 BUT LORD WOULD IT BE EASIER FOR OTHERS,

IF I WOULD BOW OUT AND NOT PARTICIPATE.

IS IT PAINFUL FOR THEM TO SEE ME. 

IS IT MORE  OF THEIR WORRY,
THAN ABILITY 

 TO SEE ME STILL FUNCTIONING.

 IT IS A DIFFICULT DISEASE.

 YOU CONTINUE TO LOSE FUNCTIONING.

MAYBE PEOPLE WOULD FEEL MORE COMFORTABLE IF THEY WOULD NOT HAVE TO INTERACT WITH ME!

I WAS EMOTIONALLY WORN OUT 

 WORRYING ABOUT HOW PEOPLE FELT ABOUT ME TRYING TO TALK 

AND MAKE A POINT AND NOT KNOWING WHEN I OPENED UP MY MOUTH ,
IF ANYTHING WOULD COME OUT.

WHEN AM I GOING TO FEEL THE MIRACLE OF LIFE,

IT IS ALL PAINFUL, SO PAINFUL,

I LOOK FORWARD TO BEING WITH EVERYONE,

THEN IT IS SO DIFFERENT

I QUESTION MY EXISTENCE.

LORD PLEASE HELP ME UNDERSTAND