HELLO GOD
I HAVE BEEN SLEEPING MOST OF THE DAY
AND MY FAMILY GOT HOME FROM WORK!
HOW WONDERFUL TO BE SHARING TIME WITH THEM
WHEN
I AM STILL MOBILE,
AND WALKING ON MY OWN.
RICH
HAS BEEN ATTENDING
AN ALS SUPPORT GROUP FOR CAREGIVERS.
HE WANTS TO BE THERE FOR ME.
HE WANTS ME TO DO WHAT I CAN
TO FULFILL MY VISION
OF
NFC.
HE IS BEHIND ME 100%
HE HAS A PHILOSOPHY
THAT MAKES ME FEEL GOOD!!!
GOD SENT ME
THREE
OF THE MOST WONDERFUL SONS
RICH, BRENT AND GREG
ALL OF WHICH ARE BEHIND ME
100%
IT IS DIFFICULT TO BE TOLD YOU HAVE A TERMINAL ILLNESS.
IT IS EVEN MORE DIFFICULT TO KNOW YOU HAVE TO DEAL WITH
TODAY IS WHAT YOU HAVE TO ACCEPT AND DEAL WITH.
BUT EVEN MORE DIFFICULT IS TO KNOW THAT
IT WILL GET WORSE TODAY, TOMORROW OR THE NEXT DAY.
THE LIGHT IS THAT
THERE ARE THINGS
INVENTED TO HELP ME WITH
MY INDEPENDENCE!!!
RICH IS SHOCKED THAT
PEOPLE ARE SO READY TO GIVE UP ON ME AND MY LIFE.
ALL MY SONS ARE GETTING EDUCATED ON ALS.
I APPRECIATE THAT.
I HAVE HEARD A LOT
ABOUT OTHER FAMILIES
FACING THIS DISEASE OF ALS
RICH SAYS HE WILL SUPPORT ME IN WHAT I WANT,
AND IS HELPING ME TO FIND OUT
WHAT THAT WILL BE.
HE MAKES ME FEEL SAFE
AND HELPS ME FACE THE WORLD!
IT IS DIFFICULT TO FACE FAMILY AND FRIENDS
IT IS EVEN MORE DIFFICULT
TO DEFEND MY POSITION
ON WHAT I FEEL ABOUT THINGS.
I AM WORRIED ABOUT GOING HOME
THAT I WILL HAVE TO DEFEND EVERYTHING I DO.
THAT IS DIFFICULT WHEN
I DON'T KNOW
AND
DON'T HAVE A VOICE TO EXPLAIN MYSELF.
I AM SEARCHING FOR MY WAY IN THE DARKNESS
GOD
THIS DISEASE IS THE DARKNESS
I HAVE NOT SEEN THE LIGHT.
I KNOW YOUR TIME IS THE BEST TIME
BUT
LORD
PEOPLE DON'T WANT ME TO WAIT ON YOU LORD.
THEY WANT ME TO HURRY UP AND MAKE UP MY MIND ON EVERYTHING.
IT IS DIFFICULT TO FACE THIS
AND I AM HAVING A DIFFICULT TIME GIVING UP MY INDEPENDENCE.
GOD,
I USED TO DRIVE MY SELF EVERY WHERE.
I USED TO DRIVE MY SELF EVERY WHERE.
I COULD GO AND DO WHAT EVER I WANTED.
NOW I HAVE GIVEN UP MY CAR
AND
HAVE TO HAVE A REASON TO GET OUT AND GO.
IT HAS TO BE AN APPOINTMENT
OR A GOOD ENOUGH REASON
TO TROUBLE PEOPLE TO TAKE ME.
THEN I MAY NEED A WHEEL CHAIR
OH MY GOD
WHAT IF PEOPLE CAN'T HANDLE IT!
WHAT IF I CAN'T HANDLE IT!
THIS IS COMPLETING 2 MONTHS
SINCE I WAS DIAGNOSED.
MY LIFE HAS CHANGED
180 DEGREES
OR
EVEN 360 DEGREES
WHEN SOMEONE HAS A VICE
AND THEY TAKE YEARS TO FACE
AND MAY NEVER FACE THEIR ADDICTION.
THAT IS A CHOICE.
IF I HAD A CHOICE
I WOULD CURE THIS DISEASE IN A MINUTE
SO NO ONE WOULD HAVE TO GO THROUGH THIS.
ALS IS AN AWFUL DISEASE
LIKE MANY OTHER DISEASES
I KNOW
I TOOK CARE OF MY PARENTS WITH THEIR DISEASES.
AND THAT WAS DIFFICULT BUT MEANINGFUL.
IT TAUGHT ME MANY LESSONS.
GOD,
I DON'T WANT TO TEACH OTHERS
AND
MY FAMILY MEANINGFUL LESSONS.
I DON'T WANT TO TEACH OTHERS
AND
MY FAMILY MEANINGFUL LESSONS.
I DON'T WANT MY FAMILY AND FRIENDS TO GO THROUGH THIS.
I COULD DEAL WITH DEATH,
IT IS THE LIVING,
I AM HAVING TROUBLE WITH.
GOD PLEASE,
I DON'T WANT TO BE A BURDEN
I DON'T WANT TO BE A BURDEN
I JUST WANT TO TAKE CARE OF MY OWN SHIT!
WHY IS THIS SUCH A STRUGGLE.
I CAN'T SLEEP BECAUSE I FEAR I WILL LEAVE SOMETHING UNDONE.
I NEED MORE TIME LORD
EVEN IF I HAVE MORE TIME
I THINK I AM SAYING
I NEED MY INDEPENDENCE BACK
I GUESS I WANT TO BE WELL.
I DON'T LIKE TO SEE THE PAIN IN OTHERS EYES ABOUT ME.
I HAVE ALWAYS BEEN ABOUT BRINGING JOY AND PEACE TO OTHERS
THIS IS MIXED UP
I CAN'T TAKE THIS.
I DON'T WANT TO BE A BURDEN
REALLY LORD