BREATHE OF AIR

DEAREST GOD

I AWAKENED TONIGHT

 WITH TOO DRY OF MOUTH

  

 I RIPPED MY MASK OFF AND STARTED TO PANIC

i REACHED FOR THE WATER AND COULD NOT PULL MYSELF UP

  

 I NEEDED A DRINK AND HALF TO SIPS

   

 OR I WILL CHOKE

 MY DIAPHRAGM DOES NOT WORK 

AND

IT DOES NOT SEND OFF CARBON DIOXIDE

 SO I NEED THIS BI-PAP MACHINE 

WORKS TO PUMP OUT THE CARBON DIOXIDE.

 NOW IF YOU ARE TAKING A DRINK AND CAN'T SWALLOW

 MORE THAN ANYTHING I WILL PROBABLY CHOKE. 

 INSTEAD I TOOK A SIP AND DROPPED THE WATER

ALL OVER THE FLOOR.

 AS THE SYSTEM SEEMS TO SETTLE DOWN 

 I STARE INTO THE DARK.

 I FEEL JUST LIKE JANE. 

THIS STUFF IS REMOVED FROM ME AS

 AS I DO WHAT   I CAN TO SETTLE DOWN. 

 LAST TIME WAS TONGUE AND TEETH

 ADD LUNGS AND CHOKING 

 AND 

 NOT BE ABLE TO TALK

THAT TAKE OF EVERYTHING

 EXCEPT MY BRAIN

 TECHNICALLY 

  

I HAVE TREMENDOUS KNOWLEDGE OF WHAT IS HAPPENING

  AND ALWAYS WILL HAVE A BRAIN TO SAY WHAT I WANT

 AND KNOW WHAT IS GOING ON. 

THIS IS YOUR GIFT TO ME LORD.

AND I VERY KNOW EVERYTHING COULD STOP IN A MINUTE

 I WANT MY FAMILY AND FRIENDS TO KNOW

 I HAVE HAD A WONDERFUL LIFE

 AND I HOPE YOU FOLLOW YOU DREAMS

 EVEN IF YOU LOSE LIKE I DID MANY TIMES.

 THIS IS MY TAPESTRY

 WITH GOLD AND  SILVER

 PURPLE AND BLACK.

 GOD PLEASE MAKE SENSE OF THIS AND HELP ME GO ON

 AND WANT TO LIVE AND BE WITH MY FAMILY


 THIS IS BEYOND THE NURSES

 THEY HAVE NEVER SEEN AN

 ALS PATIENT.

 NOT MANY HAVE IN THIS AREA

 BE STILL AND KNOW THAT  I AM GOD

 MY FAVORITE SAYING AND THIS IS THE FIRST TIME

  I HAVE BEEN ABLE TO SAY IT.

 IT IS A SIGN I AM GROWING

 NOT ACCEPTING IT,
BUT  THIS SAYING

 BUT IT IS IN MY HEART DEEP.

 GOD YOU WILL GET ME THROUGH WITH GRACE!!!

THANK YOU LORD FOR TEETH AND TONGUE AND MOUTH AND FACE

LORD,

I WISH PEOPLE WOULD REALIZE 

WHAT THEY HAVE

BEFORE THEY LOSE IT.

LORD I HAVE LOST SO MUCH FROM THIS DISEASE 

AND  

I AM SCARED

WHY LORD

 WHY IS MY TEETH

  NOT ABLE TO CHEW

  

 WHY IS TONGUE TOTALLY 

 UNCOOPERATIVE

 BREATHING HURTS

 THAT IS ABOUT THE WORSE

 AND  I GOT IT ALL

 NO VOICE

 NO SWALLOW

    

 NO CHEWING

 YOU CAN'T GET ME  BIG STEAK

 OR

 ICE CREAM 

  

 OR SIMPLY WATER.

 I AM TRYING TO RISE ABOVE IT

 BUT I CRY INSIDE WHEN,
I SEND A MEAL 

 UNTOUCHED BACK TO THE KITCHEN

 I KNOW I AM LOSING MUSCLE

WHY DID I HAVE TO GET BAD IN ALL PARTS

 YOU DID NOT GIVE ME TIME TO ADJUST

 AND COMPLAIN ABOUT 

 MY ARMS OR LEGS

YOU SHUT ME UP FIRST

 SO  I COULD NOT TALK

 WHEN I THOUGHT I WAS LIKE MY MOTHER

BUT SHE COULD EAT

 LIKE MY FATHER 

 BUT HE COULD USE OXYGEN

LORD I CAN'T EAT OR DRINK

LORD OXYGEN COULD KILL ME

 THERE IS EVEN A NAME FOR IT

 WHAT DID I SAY LORD

 CAN YOU HEAR ME 

 PLEASE LORD HELP THE DOCTORS

 FIND SOMETHING

 THAT WILL HELP 

 MAYBE

 YOU PERFORM A MIRACLE
TO OTHERS

I DON'T KNOW WHY I AM NOT BITTER

BUT I NEED TO COUNT ON YOU TO ORCHESTRATE

 MY FAMILY AND FRIENDS

 TO HELP ME LIVE.

 LORD THIS IS REALLY GETTING OLD

 RELEASE ME FROM THIS AWFUL DISEASE

 AND GIVE ME BACK MY LIFE

 I PROMISE I WILL GIVE EVERYTHING I HAVE

 TO HELP OTHER PEOPLE.

 WHY THE PERSON WHO LOVED PEOPLE 

  

 GETS SHUT UP 

SHUT DOWN

AND I NEED HELP TO GET IN AND OUT OF BED

 HAVEN'T I SURRENDERED

 WHAT MORE DO YOU WANT

 JOB HAD SOME GOOD THINGS

 I FEEL LIKE I AM SLIDING DOWN A STEEP SLOPE

 AND ALTHOUGH YOU WILL BE THERE TO CATCH ME

 I WANT THE JOURNEY 

 MY WAY

 WHAT IS WRONG 

   

 WITH ME WANTED IT MY WAY

 DON'T I DESERVE SOMETHING 

 MAYBE FREE DRINKS OF WATER

  MAYBE A CHEERIO 

  MY TONGUE CAN CATCH

OH GOD YOU KNOW WHAT WILL GIVE ME PEACE BETTER THAN I DO 

  

 I AM JUST GRASPING AT STRAWS