Wednesday, January 16, 2008

A TID BIT

I HEARD FROM BOTH MIKE'S (TORONTO AND THE UK).


AND THEY ARE BOTH WELL. ALIVE AND FIGHTING. AS I AM TOO BUT IT'S A TRYING TIME FOR ME. I EXPECT TO BE HEALED AND WELL EVERY TIME I WAKE UP. THEN A HEAVY DOSE OF REALITY HITS ME WHEN I TAKE MY FIRST STEP. my ego says everything will okay. MY EGO IS WRITING CHECKS THAT MY BODY IS HAVING A HARD TIME CASHING. HAVEN'T BOUNCED ONE. BUT I KNOW I HAVE A HEAVY LOAD TO CARRY IN THE FUTURE. I'M NOT COMPLAINING, I'M JUST SCARED-I GUESS. AND I'VE NEVER BEEN SCARED OF ANYTHING-EXCEPT BEES! I MEAN IT. but the thought of not being to move haunts me every second. IT'S NOT DYING THAT SCARES ME, IT'S NOT BEING ABLE TO MOVE. THE THOUGHT OF HAVING TO RELY ON SOMEONE FOR EVERYTHING.
I FEEL, AS OTHERS HAVE W/ ALS, THAT EACH TIME I LET SOMEONE HELP ME OR BUY A CANE TO HELP THEM WALK (I'M ALMOST THERE W/ REGARDS TO A CANE). WE ARE LOSING SOMETHING-INDEPENDENCE.

AND THAT MY FRIENDS, IS THE SCARIEST PART OF THE PROGRESSION OF ALS-LOSING YOUR INDEPENDENCE.

I WROTE THIS TIDBIT TODAY BECAUSE A FRIEND EMAILED ME. HE JUST LOST HIS ABILITY TO WALK ON HIS OWN. THE EMAIL CONVEYED TO ME, THAT IT'S A MATTER OF TIME FOR ME, BEFORE I'M THE ONE TELLING YOU THAT I NOW NEED ASSISTANCE. IT WAS SO HARD FOR HIM TO GIVE IN-SO HARD. BUT YOU KNOW ME-I'M NOT GIVING TILL I'M CRAWLING!!!!!!!!!(I GOT THAT SAYING FROM HIM)

THAT IS MY EGO, MY HOPE TALKING. AND I WILL TALK ON............

MY OCCUPATIONAL THERAPY WENT WELL YESTERDAY AT GAYLORD-MY THERAPIST-TONY-SHE IS AWESOME. SO INNOVATIVE W/ HER METHODS.

I'M OFF-TO GET FITTED FOR A NEW PALATE LIFT.

HAVE A GREAT DAY AND SMILE,
D

2 comments:

DixieMartn said...

Drew,

Keep smiling and never lose the fight you have inside of you. I can tell from what you write that you have a lot left. Don't ever give up. You're always in my thoughts.

Love,
Gina

Jim said...

Drew -

I don't know you, but came across your blog since I'm a Martin Sexton fan and saw info on the benefit concert.

I just thought I'd let you know that my dad LIVED with ALS for 30 years. We went camping, fishing, and boating even after he needed others to help him do it. We had someone remind us that there was no reason we couldn't go out and do much of what we loved to do and then helped us get started. It did take more effort and planning, but we were able to still do so much of what was important to us.

I can understand your concern about a loss of independence. The limitations for one, and relying on others for another. In case you're wondering about how someone providing the care felt, it was a lot of work, but we all learned about ourselves and while some things were taken away new gifts were given to us.

His body was reduced over time, but it made it easier to see his spirit.

He was diagnosed in 1969 and died in 1999. While it was hard to tell for sure, it looked like a cancerous tumor in his abdomen (couldn't do surgery) might have taken him at 72 instead of the ALS. He was a fighter too, but also lived with a lot of joy and faith to keep him going.

Medical research and technology is incredible today compared to then. Keep searching, fighting, praying and believe in science and miracles.

God Bless.

Jim

If you'd like to talk or e-mail, I'd be happy to share more.