GOD UNDERSTANDS WHY I AM HERE

LORD WHY 

CAN'T PEOPLE UNDERSTAND

 I REALLY HURT TODAY

  

 BECAUSE IT IS PEOPLE

  

 CAN'T THIS DISEASE BAFFLE THE BRIGHTEST OF THESE

 IT TAKES A LITTLE WORK

  

 TO SEE  THE CHANGE

  LIKE THIS IT TAKES LONGER

 FOR ME TO GET  BRAIN WAVE 

 GOING TO MY FEET AND  HANDS

 BEFORE MY FEET CAN WALK

  OR MY HANDS CAN WORK

  

SO I AM SLID  INTO MY CHAIR

  

AND A MISSED CALCULATED

I WAS NOT TRYING TO MAKE

  

 THREE POINT TURN

 MY HAND DID NOT GET

 CONNECTED TO THE TOP OF MY BRAIN

 AND MY HAND WAS OUT OF CONTROL

 WHEN I SETTLED DOWN

 I COULD CONTROL  THE WHEEL CHAIR FINE

 DR. LAURIE WOULD SAY 

  THAT IS WHAT SPASTIC AND ALS DO THAT

   THEN THEY BECOME

MORE STIFF ALL IN THE SPACE

OF ONE MINUTE

I DON'T KNOW WHEN I HAVE CHANGES

 TO COMMUNICATE THIS

  

 BECAUSE I HAVE TO PROCESS FIRST

IN MY FRONTAL LOBE

 WHEN YOU HAVE TO PROCESS THROUGH MY BRAIN

 MANY FRIENDS WOULD SAY WHY   

THICK HEADED

, 

                     I WOULD SAY I DON'T KNOW                 

 YOU SEE THIS IS A BAFFLING DISEASE
 
 AND I TO SPECIAL CARE

 TO BE RESPONSIBLE FOR MY OWN
 
 LIMBS

 BUT LIVING IN REHAB

 I FEEL THREATENED

IF THEY DON'T KNOW WHAT I NEED.

 I GUESS WHEN I TAUGHT MY KIDS

 HOW TO DRIVE

 I ALWAYS SAID

  YOU MUST ANCIPATE

WHAT THE OTHER VEHICLE WILL DO.

 ANTICIPATORY ACTION THAT YOU TAKE

  WHEN THE OTHER PERSON DOES NOT DO.

MY SONS WOULD SAY,

I DON'T WANT YOU SAY THAT

 WORD EVER AGAIN

 AND I WOULD SAY

ANTICIPATORY

 WE WOULD GO ROUND AND ROUND

  MAYBE I SHOULD TRY THE WORD ON PEOPLE

WHO WORK WITH ME

THEY COULD BE MORE ANTICIPATORY
 
 THE ALS WRECK

 TO KNOW WHETHER  I AM

SPASTIC OR RIGID

BE ABLE TO OR NOT TO EAT

 I HAVE BEEN EATING THREE MEALS A DAY

 DON'T YOU THINK THEY  SHOULD

  KNOW BASICS

 NOTHING TO DRINK BUT,

ICE WATER ICE

 IT WOULD BE HELPFUL WITH ALS

PEOPLE COULD READ LIKE A BOOK.

IT IS COMING TO A POINT WHERE I CAN'T WRITE

  THEN I CAN'T TYPE

 OR MOVE ANY PART OF MY BODY

  I WILL ONLY BE ABLE TO COMMUNICATE WITH MY EYES


 GOD UNDERSTANDS WHY I HAVE ALS

 AND

WHY YOU ARE PUT TOGETHER WITH ME

 GOD UNDERSTANDS.US









   
                    

  

 

DEAR LORD THEY KNOW NOT WHAT THEY DO.

MY DEAR LORD CAN YOU GUIDE ME

I HAVE ALS

 AS IF YOU DON'T KNOW GOD    

 WELL LORD IT  IS THIS ALS THAT HAS GRABBED ME IN EVERY WAY

 A REAL TRICK

    

 TO GET WHAT YOU NEED

  

WHEN I CAN'T TALK

 MY HANDS ARE TOO WEAK TO SAY

 STOP, WAIT, LET ME GET MY BARRINGS

I CAN'T STAND UP STRAIGHT 

 AND FALL OVER

LANDING CROOKED ON BED

CHAIR AND TOILET.

IT IS VERY DIFFICULT FOR ME TO MOTION TO THEM

WHAT I NEEDED

 THEY CAN'T UNDERSTAND WHAT  I NEED

 NO ONE BOTHERS TO EVEN KNOW I'M

  

 TRYING  TO TELL THEM SOMETHING

 GOD WHY IS THIS DISEASE SO ALL

 CONSUMING?

 WHY CAN'T I REACH PEOPLE

 AT THE TIME I NEED IT

 LIKE WHEN MY FOOT DOESN'T MOVE

 AND TURNED AROUND FACING THE WHEEL CHAIR

 I JUST HAVE TO STRUGGLE TO MOVE MY FOOT.

 KNOW ONE SEES OR THINKS IT HURTS

  

 I AM STIFF NOT DOUBLE JOINTED.

  

 ALS HITS DIFFERENT PEOPLE DIFFERENTLY

  GOD HOW LONG HAVE SPENT CARING ABOUT OTHERS

WHY  GOD CAN'T THEY SEE I HURT.

 I HAVE MUSCLES THAT ARE GONE

 AND WHEN I SIT IN A WHEEL CHAIR AND THE BACK HAS BEEN LEFT BACK

 IMMEDIATELY LAUGHING WHEN I FALL

 THEY SIT ME ON THE SIDE OF MY BED

 AND I FALL BACKWARDS

 AND THEY GO ON TO LIFT 

  

 MY FEET ON THE BED

AND SAY SHE LOOKS CROOKED

BUT IT REALLY FEELS LIKE

I HAVE A BROKEN BACK

THEY SAY SHE NEEDS PULLED UP.

 THERE SHE IS STRAIGHTEN OUT

 GOD I AM PLEADING WITH YOU TO HELP ME

 HELP THEM.

 GOD  I KNOW WHAT I CAN DO,

 BUT GOD WILL YOU INTERVENE IN THEIR

     

 IN THEIR HEART.

 OPEN THEIR EYES

 GIVE THEM WHAT

THEY NEED TO BE ALERT

TO ANY PATIENTS NEEDS.

THANK YOU LORD

LORD I GUESS I'M STILL ANGRY

LORD I FEEL THE DIFFERENCE

I AM HERE WITH YOU

 WHEN I WASN'T WORKING YOU

 AND PEOPLE SAID

WAIT ON THE LORD AND HE WILL PROVIDE

  EVEN GREATER THAN

YOU EVER NEED IN ABUNDANCE

BE FAITHFUL AND

 HE WILL BE HERE

 WELL LORD I WAITED YEARS FOR YOU
 
 YEARS, YEARS, YEARS


 AND EVERYDAY I AM THANKFUL




 I WAS NEVER EVER DISAPPOINTED




I AND YOU SHOWED UP EVERYDAY


BECAUSE I DID NOT HAVE MUCH I HAD TO DEPEND


YOU LORD


  YOU BROUGHT MY SON FROM TH DEPTHS OF HELL


MY TWO GRAND DAUGHTERS


RICH, STACY AND GREG


 CAREERS THAT WILL GO FORWARD


 WHEN MY FRIENDS MEET SOMEONE SPECIAL


 I STEP BACK AND PROBABLY


AM A MARTYR


 I SUFFER BUT YOU ARE THERE AND GIVE ME


 A NEW IDEA POPS IN MY HEAD AND I


 START CHANGING MY COMFORTABLE LEVEL


 TO A NEW AND DIFFERENT


PROJECT LIKE "NEIGHBORHOOD FRIENDS CARE"


 I WAS DESTINED TO DO THAT AFTER I LOST  SCHOOL.




AND WAS IN SUPPORT GROUPS OF MANY ILLNESSES


AROSE THAT IDEA.


 GENE SAID, '" I 'WAS LIKE A INCUBATOR 


  I KEPT IT ALIVE FOR FIVE YEARS


THIS IS WHERE YOU AND I SLIPPED UP.


I   ALWAYS TOLD PEOPLE

BE AWARE OF A CRISIS

 A MIRACLE  IS ABOUT TO

HAPPEN

AND MANY YEARS I


  SAW WHAT GOD GAVE

HE WILL GIVE 

MORE THAN YOU EVER WOULD KNOW

I DID NOT WANT MUCH

BUT TO LIVE NEAR MY GRAND-DAUGHTERS

    

 SO I COULD HELP WHEN THEY NEEDED ME




HE ALLOWED ME KNEW STEPS 


 I WAITED


MY HOUSE PAINTED ON THE INSIDE


JC WILLIAMS WAS SENT


 AND HOUSE WAS PAINTED

 I WAITED YEARS FOE THE LORD


AND HE CAME


LORD YOU KNOW EVERY TIME I WAS HURT IN ACCIDENTS

  AND WAITED TO GET WELL,
  IT TOOK OVER A YEAR FOR OVER MANY YEARS


 AND WAITED GRACIOUSLY


FOR YOU LORD


 I KNEW YOU CAME AND ALWAYS

 GAVE DEEP THANKFULNESS
  
 ESPECIALLY FOR MY NEW CAR

 TO GET TO THE POINT

 WHERE ARE YOU LORD


 I AM RISING TO THE TOP


 OF DISEASE


 I CAN'T EAT, MY LUNGS ARE VERY BAD,






MY HANDS AND LEGS DON'T MOVE


THIS IS MY WORST


 I DON'T KNOW WHAT I AM WAITING ON A TRAKE


 I APPRECIATE  ALL THE EQUIUPMENT


 THAT MAKES THIS DISEASE EASIER


GOD I AM HAVE A TERRIBLE  


 IDEA I CAN'T
            
GIVE UP MY FAMILY


I'VE BEEN REALLY AWFUL GRANDPARENT


 I CAN'T STAY WITH THEM


 OR PICK THEM UP


ARE THE GATES OF HEAVEN


 IS WHAT  I AM WAITING ON?


BUT I AM NOT


I WANT TO AND GIVE THE WORLD THE WORLD HUG


I MEAN I WOULD  LIKE  TO  SAY
THANKS


THAT HAS TOUCHED MY LIFE


AND MY LIFE BE RICHER 


























  

MY DEAREST LORD I REALIZE YOU ARE WITH ME

DEAR LORD I THOUGHT YOU WERE HIDING

 BUT AS I GET WORSE EVERY DAY

 AND FRIENDS AREN'T CONTACTING ME

  

 OR STOPPING BY

 WHICH LEFT ME VERY LONELY

 AND WONDER

HOW ANY ONE

 COULD IMMEDIATELY STOP LIVING

AND 

LOOKING TO THE FUTURE

IT SEEMS IMPOSSIBLE IF SOMEONE ISN'T

GOING

 THROUGH A SEVERE CRISIS

 LIKE A NATURAL DISASTER

 OR

 IF ONE  CAN'T

  

 CAN'T GET OUT.

THEN THAT IS W

 I HAVE TO SPEAK MY TRUTH

 WHILE I WAS IN MY HOME 

 I COULDN'T IMAGINE NOT LIVING THERE

 I HAD A FEED TUBE  SURGERY

WHICH WAS HARD ON ME

  AND WHEN RELEASED

 MY CHILDREN SAID 

YOU NEED 24 HOURS CARE

 AND FOUND A NICE REHAB PLACE

 WHICH HAS TURNED OUT TO BE WHERE I LIVE

I CAN'T EVEN CLIMB MY

 STEPS

 INTO MY HOME.

 THE LAST THREE YEARS

 MY APARTMENT

I FINALLY GOT IT TO WHERE I LIKED IT;

HOW I WANTED TO PAINT IT
 
AND GET WHITE COVERS FOR LIVING ROOM SUMMER FURNITURE

OUT DOOR FURNITURE

 INSIDE I HAVE LABELS 

TO NAME COMPUTER WIRES AND OTHER THINGS

  .
 I GOT THE BEST BATHING SUIT I HAD EVER HAD.

WELL ENOUGH ABOUT MY HOME


WHEN I HEAR SOMEONE

  TALK  ABOUT GOING TO THE MARKET ,

   BUYING FLOWERS,

  THURSDAY FARMERS  MARKET


SHOPPING FOR CLOTHES


 PIERCED EARRINGS


 EATING ANYTHING


 DEAR GOD


 I AM HANDLING IT AND LETTING GO


 THE ONLY WAY I COULD DO THAT


IS YOUR DIVINE HELP


THAT ALLOWED


 NOT TO SUFFER THOSE LOSSES.


WAS NOT ME JUST ASK CAROL ADAMS

THE WAY  I CARRIED ON WITH HER

ABOUT NOT WANTING TO LEAVE  MY PLACE

PROBABLY SCARED THE WHOLE CHURCH

IF SHE STAYS IN HER APARTMENT

 WE CAN'T HELP WITH THAT DREADED DISEASE.

SO I AM NEARLY TOTALLY ISOLATED

AND ME AS A MEMBER OF MY SUNDAY SCHOOL CLASS

 COULD EVER FATHOM SUCH A LOSS.


 LET ALONE THE LOSS OF BODY FUNCTIONING

WELL LORD

I HAVE CHALLENGED YOU INSIDE AND OUT

 AND FINALLY

 I COULD NOT TAKE THIS GRAVE LIFE


WITHOUT LAUGHTER AND JOKES


IF IT WERE NOT

FOR YOUR BELIEF IN ME

AND MY BELIEF IN YOU

THIS IS A GOD-CENTERED WORK

I HAVE BEEN SLIDING DOWN

INTO THE DEPTH'S OF DARKNESS AND LORD

YOU HAVE KEPT ME A FLOAT

PRAISE THE ;

LORD BECAUSE HE HAS DONE

A GREAT FEAT IN ME!




















































 

•  I

ALONG DAYS NIGHT, LORD I AM FAILING

LORD

I DON'T KNOW WHETHER PEOPLE  

UNDERSTAND 

HOW FAST THIS DISEASE TRAVELS.

ANYTHING YOUR FAVORITE FOOD WAS

 TO CARE LESS FOR ANY FOOD

I WOULD NOT 

LIKE

TO EVEN BE SERVED

MADE BY 

SOMEONE ELSE

IS NOT PLEASING MEET

 LORD WHAT AM I TO LEARN

FROM ALL THESE

LOSES

 YOU DON'T EXPECT

  

 LORD 

 MY INDEPENDENCE

 HAS BEEN SHOT DOWN

SOMEONE HAS TO BATH ME

 I CAN'T EVEN WASH MY OWN HAIR 

 I HAVE TO HAVE TWO PEOPLE

     

 TO GO ANYWHERE

  

EVEN THE BATHROOM.

  I HAVE A LOT

I CAN DO 

 MANY THINGS THAT HAVEN'T

 GONE  

 COMMUNICATION

  

 FAMILY, FRIENDS, PASTORS.AND GROUPS

 IT IS BLESSING  

I HAVE  MY EYES

 MY HANDS ARE ONLY SLIGHTLY

 USEFUL.

 THIS IS MY WORSE SEASON

  

 IF SOMEONE HAD TOLD I WOULD LOSE

ALL EIGHT MONTHS SINCE I STARTED TO LOSE

 IN ALL WAYS.

 USUALLY PEOPLE HAVE

 SOMETHING THEY CAN WORK

OUT THROUGH

 HEALTHY LIVING.

 NOW THERE IS NOTHING TO DO 

 BUT MANAGEMENT

 OF HOW YOU LIVE

  

 WITH ALS 

IT IS A FIGHT 

   

 TO DO ANYTHING.

 LORD THANK YOU GUIDING ME
TO ACCEPTANCE

OF MY LIFE

   I FEEL I AM BRAVE

 AND COURAGEOUS

 LORD I WISH
 
 I DID NOT WANT BE BRAVE

 OR COURAGEOUS,

 THOSE ATTRIBUTESI
 
 AT THE COST OF SOPHIE AND ANNIE

 RICH AND STACY

GREG

 BRENT
  
 BARBARA AND FAMILY

 JOHNNY AND BELKIS

 A NEW FOUND PEACE

WITH DICK

 CONNIE AND HER FAMILY

 EDIE AND HER FAMILY
 
GENE AND HIS FAMILY

AND MAYBE IT NOT WHAT I PLANNED
   

 THAT IS THE MOST PROBLEMITIC

IT'S ALL THE DREAMS AND LOVE OF PEOPLE

 "NEIGHBORHOOD FRIENDS CARE"

STYLE AND CREATION
 
 CHURCH, BIBLE DISCUSSION
  
 LORD THESE ARE NOT WHAT I AM BRAVE ABOUT

ALL THESE  I AM  STRUGGLING WITH AND DON'T TO WANT LEAVE
 
 AM I SELFISH OR  

 YOU WILL WORK IT OUT


I FEEL CONFIDENT IN YOU LORD

THAT  YOU WILL FIGURE OUT WHAT 
 I AM TO DO.





 

GOD DID I TAKE A BREAK FROM YOU OR DID YOU TAKE A BREAK

DEAR LORD I HAVE BEEN SO TIRED

I AM TRULY BLESSED 

 FOR ALL THE HELP AND FRIENDS

I HAVE RECEIVED

 I KNOW THAT IT IS YOU LORD

THAT MAKE ALL THIS OVER WHELMING

 LOVE THAT HAS BEEN SHOWN ME

BUT LORD FOR ALL THE OTHER ALS PATIENTS

 I WRITE THIS BLOG TO SHOW 

 WHAT IT IS REALLY LIKE

TO HAVE ALS

 YOU DON'T KNOW ABOUT ONE SECOND OF YOUR LIFE

 THINGS DON'T WARN YOU JUST LOOSE

STRENGTH 

IN ONE PLACE OR THE OTHER

 AND ONE CAN'T FACE IT

 LIKE I KNOW MYSELF

 I SPILL WATER PITCHER

 AND GLASS MANY TIMES A DAY OR NIGHT

 IN BED ALL OVER ME.

 I STILL DON'T WANT TO GIVE UP MY INDEPENDENCE  


 I REACH FOR MY CUP A SPILL IT ALL OVER ME IN BED

AND. I DON'T ASK THEM TO CHANGE THE BED

 I JUST ASK FOR A TOWEL AND PAT IT UP

 AS POSSIBLE.
    

 INDEPENDENCE


IS THE ONE THREAT THAT SCARES

 ME TO DEATH


     OTHER PEOPLE I SEE ARE COMPLETELY DEPENDENT
                GOOD
  I BELIEVE  THEY TAKE  CARE OF PEOPLE HERE

 BUT THEY ARE 90 YEARS OLD

 I AM YOUNG AND IN NO WAY

 WANT TO BE THAT WAY.

 I DON'T KNOW HOW MUCH FIGHT

I HAVE IN ME.

 I HAVE ALREADY GIVEN IN TO SHOWERS BY MY SELF

 OR GOING TO THE BATHROOM

 BY MYSELF


 I CAN'T  BELIEVE I AM THIS FAR GONE

BUT  I  SUBMIT TO IT.

 WHY LORD WHY DO I TAKE THE DIFFICULT

 ROAD

YOU ARE VERY SENSITIVE

 ABOUT EVERYTHING

THIS IS MY CHALLENGE BUT

 LORD I WANT TO FEEL YOU THERE.

 WE DROVE BY PLACES TODAY

 THAT MY FRIEND CONNIE

AND  WE VISITED IT MANY PLACES LIKE DENNY'S

WHEN I SAW IT REMEMBER

 HOW WE LIVED

AND TALKED AN ABUNDANCE OF LIFE

SUPPORTING AND EMPOWERING EACH OTHER

 PEOPLE ARE AFRAID

TO TAKE ME OUT BECAUSE THEY ARE AFRAID THEY CAN'T DO IT.

 OR SOMETHING ABOUT

 ME FALLING.

 I HAVE FALLEN MANY TIMES

 AND STILL KEEP TICKING.

 NOT THAT I WANT TO FALL BUT

 I WANT TO EXPERIENCE   
 
MY FAMILY, MY FRIENDS WITHOUT THEY DESERTING ME

I KNOW SOME PEOPLE CAN BE WITH ME

I KNOW SOME PEOPLE CAN'T  BE WITH ME

 I HAVE TO LET EVERYTHING GO

FRIENDS, APARTMENT, AND CAR

  GOD YOU HAVE GIVEN ME THE STRENGTH

  TO DEAL WITH

LETTING GO BUT

MANY THINGS  GO THROUGH MY HEAD

 IN A DAY.

 THE NURSES AND AIDES

 HAVE FUN WITH ME

 AND WE

JOKE AND JOKE AND JOKE

TO MY DEMISE AT TIMES

AND SURELY THEIR DEMISE










 






  






  

I AM IN AWE OF YOUR GIFTS D GOD THANK FROM THE BOTTOM OF MY HEART

MY DEAREST LORD

THIS DISEASE IS A REAL CHALLENGE

I FELL AGAIN TODAY

AND I BELIEVE YOU 

  

CARRIED ME AND LAID ME DOWN

SOFTLY

I DID NOT GET A SCRATCH,

AND THANK YOU LORD

FOR THE NURSES WHO COULD GET ME UP

I HAVE FALLEN SEVERAL  TIMES

AND COULD NEVER GET UP

 THANK GOD I LOST WEIGHT

THE WORLD MOVES SO FAST

 ONCE I LOSE CONTROL YOU MY AS WELL

GO WITH THE FLOW..

 PEOPLE THINK WHEN

I LOSE CONTROL OF A LEG

OR  MY FOOT GIVES OUT

YOU CAN'T KEEP MY FOOT OR LEG

UNSTABLE

YOU MUST BACK OFF AND START OVER

AND YOU MAY NEED EXTRA HELP

YOU HELP ME BE HERE

NURSES TEAM UP KNOW MATTER WHAT

LAST WEEK I WAS HURT  BADLY

TT

 YOU ARE WITH ME SEEING I WON'T

I WILL ASK FOR HELP ANY TIME

 AND WON'T GO ALONE.

 DEAR LORD DO YOU THINK I AM TIRED

 OR HAVE I LOST MY STABILITY

AND WILL SOON NO LONGER 

   

 BE ABLE TO WALK

IT IS NOT FOR ME 

 IT'S FOR GRAND-DAUGHTER

  

MY CHILDREN AND FRIENDS.

 THEY WILL BE REALLY

AFRAID TO  TAKE 

AND TAKE ME ANYWHERE.

I AM STILL LIVING

 I'VE LOST SO MUCH ABILITY

 MY HANDS ARE REALLY GOING

 FAST

 

 

.