What has bothered you the most after your strokes?

I HATE THE LOSS OF INDEPENDENCE (I CAN’T EVEN POTTY ALONE, & IF I WANT I 2 GO PLACES, I NEED SOME1), & I LIKE MY ALONE TIME, SO MY HUSBAND HAS FOUND WAYS 2 BE LEFT HOME ALONE (LIKE, I CAN USE A PHONE 2 CALL 4 HELP, EVEN THOUGH I DON’T TALK!)

I ALSO HATE BEING SO DEPENDENT, & I CAN BE TOO STUBBORN TOO ASK FOR HELP, SO I KEEP TRYING UNTIL I FIND WAYS 2 DO THE EASY STUFF! I LEARN THE MOST WHEN I’M ALONE. THINGS TAKE LONGER,, BUT I GET CREATIVE, & MUCH MORE INDEPENDENT! PLUS, I FIND IT HELPS THAT I THINK I’M CAPABLE OF MORE THAN I SHOULD BE CAPABLE OF DOING, CUZ THEN WHEN I FAIL & AM FORCED BACK 2 REALITY, I CAN SEE THE BABY STEPS I NEED 2 ACTUALLY DO IT, & I’M SO STUBBORN & DETERMINED, THAT I’LL KEEP TRYING UNTIL I CAN DO IT, & BE RIGHT THAT I KNEW I COULD DO IT! LOL

HUMOR HELPS 2 DEAL W/IT, BUT MOST OF ALL, I CONCENTRATE ON WHAT I HAVE, NOT WHAT I DON’T HAVE!

Can you share more about your personal victories in your craft room?

IT IS JUST THINGS THAT ENCOURAGE MY INDEPENDENCE, BY FINDING CREATIVE WAYS 2 ACCOMPLISH A SIMPLE, “NORMAL” TASK:–THE THINGS I DO ARE SIMPLE TASKS 4 OTHER PEOPLE, BUT I MAY FIND UNIQUE & CREATIVE WAYS 2 ACCOMPLISH IT ONE-HANDED. SOMEEXAMPLES:
1. OPENING A CD CASE & PUTTING IN THE CD
2. ACCESSING & PUTTING IN THUMBDRIVES.,
3. HOW I SET UP THINGS SO I CAN BURN CDS ALONE
4. OPENING WRAPPERS 2 GET AT THINGS (SOME THINGS ARE SEALED, OTHERS TIE, & THEY ALL ARE DIFFERENT KINDS OF PAPER)
5. HOW I GET ZIPLOCS, POST-IT NOTES, & PENS OUT ON MY OWN, THEN HOW I OPEN THE ZIPLOC, PUT STUFF IN IT, & WRITE ON THE POST-IT THE THINGS I NEED MY CAREGIVER TO DO WITH WHAT IS IN THE ZIPLOC…
6. HOW I MOVE THINGS & CLEAN…
7. WHEN BLANK PAPER ACCIDENTALLY COMES OUT OF MY PRINTER, I CAN PUT IT BACK IN & PRINT ON IT.
8. HOW I PICK UP SLIPPERY FLAT, HEAVY, &/OR ROUND OBJECTS W/MY GRIPPER
9. HOW I MOVE CHAIRS, REACH THINGS, ETC.
RECENTLY, I WAS GOING THROUGH THE DOUBLES OF MY PICTURES, DECIDING WHAT TO THROW AWAY, & WHAT TO SCRAPBOOK. I ACCIDENTALLY THREW AWAY A PICTURE I HAD WANTED. THERE WERE A LOT OF PICTURES TO GO THROUGH, BUTT THHE TRASH HAD JUST BEEN EMPTIED, SO IT WAS JUST PICTURES. (KEEP IN MIND THAT A 2 POUND WEIGHT IS HEAVY FOR ME!) I WAS ABLE TO REMOVE THE LID & LOOK. AFTER A WHILE, I HAD 2 GIVE IN & HAVE HELP FINDING THE PICTURE, BUT AFTERWARDS, SOMEHOW I PICKED UP THE HEAVY TRASH CAN LID W/MY GRABBER, PUT THE LID ON CORRECTLY, & MOVED THE TRASH CAN BACK WHERE IT BELONGED.

ACCOMPLISHMENTS

A WHILE AGO, A FRIEND WAS TEACHING A LESSON AT CHURCH 2 THE TEENAGE GIRLS (THAT I ALSO TEACH), & SHE INVITED ME 2 COME WRITE ON THE CHALKBOARD (SOMETHING I CAN’T DO, & THESE GIRLS DO IT FOR ME, WHEN I TEACH). THE IDEA WAS THAT THE GIRLS WOULD SEE ME STRUGGLE, & OFFER 2 DO IT. BUT SOMETHING VERY INTERESTING OCCURRED: THEY SAT THERE, SURE THAT AFTER A LITTLE STRUGGLE, I COULD DO IT! LOL THEY WEREN’T BEING MEAN…THEY IN FACT KNOW ME TOO WELL (I KNOW I HAVE FRIENDS & FAMILY MEMBERS WHO HAVE 2 RESIST THE URGE 2 HELP ME…), & EVEN COMMENTED ON HOW THEY HAVE SEEN THINGS HAPPEN, AFTER I STRUGGLE, SO WHEN I WAS ASKED 2 USE THE CHALKBOARD, THEY KNEW I WOULD STRUGGLE, BUT FIGURED I WOULD DO IT, EVENTUALLY.

LIKEWISE, THE OTHER DAY (LAST THURSDAY) I WAS LAUGHING & LEANING 4WARD AS ANGIE WAS LEAVING THE ROOM. MOST PEOPLE WOULD RUN BACK 2 ME & HELP ME SIT BACK UP, BUT IT WAS SO COOL WHAT ANGIE DID!: SHE SAW ME CATCH MYSELF, THOUGHT, “SHE’S GOT IT…”, & SHE KEPT ON WALKING, & LEFT THE ROOM! I PROCEEDED 2 CALM MYSELF, & PUSH MYSELF BACK 2 SITTING UPRIGHT…BUT I LOVED HOW SHE REACTED LIKE IT WAS NO BIG DEAL, & HAD COMPLETE CONFIDENCE IN ME 2 NOT FALL, & INSTEAD BE ABLE 2 SIT UP AGAIN, WITHOUT HELP! (MK OFTEN REACTS THAT WAY, & SOMETIMES HAS MORE CONFIDENCE IN ME, THAN I HAVE IN MYSELF, BUT IT WAS COOL THAT SOME1 ELSE SHARED THAT CONFIDENCE IN ME!) ANGIE L8R EXPLAINED THAT SHE CAN TELL IF I’LL NEED HELP, BY THE ANGLE—BASICALLY, I HADN’T HIT THE “POINT OF NO RETURN” YET, SO ANGIE KNEW I WAS FINE, & IF NOT, I CAN HOLLER 4 HELP (IT USED 2 BE THAT I COULD ONLY SIGN IF I NEED HELP, BUT NOW I CAN SAY NAMES, OR SAY, “HELP ME!”).

ANGIE HAS A LOT OF “PRACTICE” AT WATCHING ME TRY 2 DO NEW THINGS ALONE, CUZ I TRY 2 DO STUFF ALONE WITH HER RIGHT THERE, ALL THE TIME (OFTEN SHE’S BUSY HELPING HER BABY OR WITH OTHER THINGS 4 ME, & I FIGURE I CAN EITHER BE BORED, OR TRY MYSELF WHILE I WAIT)! SO, I FIGURE THAT WHILE I WAIT 4 HELP, THERE’S NO HARM IN TRYING 2 DO IT MYSELF, ESP. WHEN SOME1 IS RIGHT THERE (SO IF I NEED 2, I CAN SAY, “HELP ME!” –THOUGH I WAIT 2 EVEN ASK 4 HELP, CUZ THERE’S ALWAYS A CHANCE I CAN DO WHAT SEEMS IMPOSSIBLE). I MAY GET CREATIVE, OR EVEN FEEL PAIN, B4 I ASK 4 HELP…CALL IT STUBBORN OR PROUD, BUT I FIND A THRILL IN BEING INDEPENDENT!

HOWEVER, EVER SINCE MY FALL, I TRY 2 KEEP THE DESIRE FOR INDEPENDENCE IN FAMILIAR PLACES…LIKE MY HOUSE. SOMETIMES I WISH I HAD A VIDEO CAMERA IN MY CRAFT ROOM: SINCE THINGS IN THERE HAVE BEEN PUT IN SPECIFIC PLACES 2 INCREASE MY INDEPENDENCE, I DO SO MANY COOL THINGS WHEN I’M ALONE IN MY CRAFT ROOM, BUT THEY ARE TOUGH 2 EXPLAIN, SO I JUST SILENTLY TELL MYSELF HOW AWESOME I AM, & THEN GO ABOUT MY DAY, AS IF I DID NOTHING. LOL IF I HAD A VIDEO CAMERA, PEOPLE COULD JUST SEE WHAT I DOSOMETIMES I MAY APPEAR OVERLY CONFIDENT IN WHAT I CAN DO, & I KNOW IF U LOOK AT ME, IT SEEMS I CAN’T ACCOMPLISH MUCH, BUT AS MY DAD USED 2 ALWAYS SAY, “WHERE THERE’S A WILL, THERE’S A WAY!” & SINCE I HAVE WITNESSED HOW MUCH I CAN ACCOMPLISH ALONE IN MY CRAFT ROOM, 2 ME, IT DOESN’T APPEAR SO CRAZY!

SATURDAY WAS A DAY OF ACCOMPLISHMENTS. I SPENT THE MORNING GOING THROUGH DOUBLE COPIES OF MY PICTURES, DECIDING WHAT 2 KEEP & SCRAPBOOK, & WHAT 2 THROW AWAY. I ACCESSED SOME ZIPLOCS FROM A CABINET, SO I COULD ORGANIZE THE REMAINING PICTURES, & ATTACH A POST-IT NOTE ON EACH ZIPLOC, W/WRITTEN INSTRUCTIONS 4 ANGIE, SO SHE KNEW WHAT 2 DO WITH THE PICTURES INSIDE EACH PARTICULAR ZIPLOC. THEN I CLEANED UP, PICKING UP SOME IMPRESSIVE THINGS W/THE HELP OF MY GRIPPER…

L8R, MK ENTERED A ROOM WHERE I HAD PUT MY LIFT ON (OK, SOPHIE LIFTED MY LEFT ARMPIT OVER A BUMP IN THE LEFT ARMREST, WHICH WASN’T NECESSARY, BUT MAKES IT TONS MORE COMFORTABLE!), & FOUND ME LIFTING MYSELF IN THE LIFT! THAT NIGHT, WHEN I NEEDED WATER, & WAS TOLD 2 WAIT, IT WAS NOT IMPATIENCE, BUT RATHER THAN SIT LIKE A BUMP ON A LOG, I OPTED 2 TRY…AFTERALL, THERE WAS A CUP IN MY LAP! I UNSCREWED THE LID (USING MY LEGS 4 MY LEFT HAND), RAISED MY CHAIR, FILLED THE CUP USING THE FRIDGE, & SCREWED ON THE LID! AS I LAUGHED & LOWERED MY CHAIR, I THOUGHT, & ALL I WAS SUPPOSED 2 DO AGAIN (AFTER MY STROKE), WAS BLINK MY EYES! SWEET!”

Cliff Cushman was a member of the 1960 U.S. Olympic team who was in the 400 metre hurdles where he won the silver medal. In 1964 Cliff Cushman hoped to compete again in the Olympics. But his hopes of winning a medal were lost when he stumbled over a hurdle at the final U.S. Olympic trial meet in Los Angeles.. He said:

“In a split second all the many years of training, pain, sweat, blisters and agony of running were simply and irrevocably wiped out.

“But I tried! I would much rather fail knowing I had put forth an honest effort than never to have tried at all. …

“Certainly I was very disappointed in falling flat on my face. However, there is nothing I can do about it now but get up, pick the cinders from my wounds, and take one more step followed by one more and one more, until the steps turn into miles and miles into success.

“I know I may never make it. The odds are against me, but I have something in my favor—desire and faith. …

“I dare you to look up at the stars, not down at the mud, and set your sights on them that, up to now, you thought were unattainable. There is plenty of room at the top, but no room for anyone to sit down.

“Who knows? You may be surprised at what you can achieve with sincere effort. So get up, pick the cinders out of your wounds, and take one more step.

“I dare you!”