I’M “SPEAKING” AT THE DOCTOR’S CONFERENCE IN OHIO NEXT WEEK. THE KIDS STAY, BUT MARK & I R DRIVING. IT'LL BE AWHILE B4 I POST, BUT PRAYERS R WELCOME 2 CONTROL MY PBA & REMEMBER EVERYTHING (ESP. SINCE I'D PURPOSELY BLOCKED OUT A LOT, SO I COULD 4GET STUFF & MOVE ON, & NOW I NEED 2 MAKE THOSE DAYS COME BACK.)

WHEN I'M GONE, HERE'S SOME FOOD 4 THOUGHT:

"IT'S NOT WHAT HAPPENS 2 U, BUT HOW U REACT THAT MATTERS." –EPICTETUS

"LIFE IS 10% WHAT U MAKE IT & 90% HOW U TAKE IT." –IRVING BERLIN

BEEN THINKING OF WHAT KIND OF THINGS I AM CAPABLE OF DOING THAT OTHERS MIGHT BE UNAWARE OF:

• WRITING/DRAWING
• OPEN CD CASES & PUTTING THEM IN MY COMP.
• RETRIEVING K,EENEX FROM OUT OF A CASE
• RETRIEVIN STUFF FROM MY WHEELCHAI POCKET
• VOICE—I SAY "UH-HUH" ALL THE TIME & OFTEN WORDS I SIGN, I CAN VOCALIZE VOWE;S (LIKE "I O U" 4 "I LOVE U"
• WALK W/HELP IN SWIM THERAPY (BUT NOT ON DRY LAND)
• RETRIEVIN THINGS LIKE REMOTES IF I GET IT ON MY RT. SIDE & IT'S ON A TABLE, IN A DRAWER, OR ON SHEETS ON A BED, SO I CAN PULL THE SHEETS 2 ME
• OPEN/CLOSE R FRONT DOOR BY THE HANDLE
• TURN ON/OFF A LIGHT SWITCH
• PLAY PIANO, GUITAR & AUTOHARP W/HELP.
• GET ON MY COMP. ALONE (NO TRAY—FREE-STANDING DESK)
• ALTERNATE 2 STRAIGHTEN LEGS
• TEACH A SCRAP. CLASS
• ITCH FACE
• WHEN LAYING, RAISE ARM STRAIGHT UP
• LEAN FORWARD & LEAN 2 THE RT.
• USIMG MY ARM SUPPORT, FEED MYSELF

THE KIDS WOULD ADD: "SUPER JUMPY." IN FACT, SUN., 9/18, THE KIDS HAD A BOOTH OF STUFF THEY WERE SELLING, TITLED: "THINGS 2 SCARE MOM." I JUMP GOOD.

REMEMBER THIS:
ALL THE KIDS DELIGHT IN MY FEAR OF SPIDERS. (SOMETIMES, I SWEAR IT'S ARACHNAPHOBIA.) I CAN KNOW A SPIDER IS FAKE & STILL FREAK OUT, JUMP, & MY HEART RACES, IF I TOUCH IT. (BUT IT HAS 2 BE A SPIDER &, SO MY VISION IS NOT A FACTOR, I TOSS THEM UNLESS THEY'RE ODDLY COLORED OR HUGE.) DO IT 2 MUCH & I FEEL I'M HAVING A HEART ATTACK. BUT I LAUGH—MY REACTION IS FUNNY & HEARING FAM. LAUGH, THANKS 2 PBA, IT TRIGGERS A LAUGH RESPONSE THAT I CAN MAKE A BIGGER LAUGH.

I WILL BE GONE THE 1ST WEEK OF OCT—WE (MARK & I) R GOING 2 AN INTERNATIONAL DOCTERS CONFERENCE IN OHIO 2 SPEAK ON OCT. 5, AS MY 1ST STROKE DR. ASKED ME 2 "SPEAK." MARK IS KIND ENOUGH 2 BE TRANSLATING & DRIVING 22 HRS., & MAY MAKE A 4 HR. DETOUR 2 INDIANA, WHERE WE MOVED FROM. I'VE BEEN TYPING RESPONSES 2 SOME QUES. I MAY BE ASKED, SO I CAN'T FIND TIME 2 TYPE AN ENTRY, SO HERE'S A VERY UPDATED OLD POST:
I HAVE NOTIICED, OVER THE YRS., SOME COMMON MIS-CONCEPTIONS:
• IT'S WORTHLESS 2 ACKNOWLEDGE ME. I'M A PERSON 2! ACKNOWLEDGE I EXIST. U WOULDN'T LIKE IT IF U TOOK YOUR SPOUSE SOMEWHERE & PEOPLE TALKED PAST U TO THEM & DIDN'T SHAKE YOUR HAND!
• U NEED 2 KNOW ASL 2 TALK 2 ME. BUT IF U KNOW ASL, DON'T SIGN 2 ME-I CAN HEAR & HAVE DOUBLE VISION, SO IF I DON'T ANSWER, IT MAY BE BECAUSE IT'S HARD 2 C WELL! IF U DO NOT KNOW ASL, II CAN NOD YES/NO, SHRUG MY' SHOULDER 4 'MAYBE,' WAVE MY HAND 4 'SORTA' OR 'KINDA.'
• CING MY HAND MOVE, DOESN'T ALWAYS MEAN I'M TALKING-WHAT IF I ITCH?
• IF U ASK A # QUES., EXPECT A # ANSWER. #1-5 R EASY. THEY LOOK IT. I HATE SHOWING '4′ WHEN A # QUES. IS ASKED, HAVE SOME1 GUESS AN ASL 'B,' I SAY NO, SO ANOTHER LETTER IS GUESSED, SO SINCE A LETTER IS EXPECTED, I SPELL 'FOUR.'
• I AM INCAPABLE OF MANY THINGS. U'D BE SURPRISED WHAT I CAN DO, & AS MY KIDS GROW UP, I CAN DO MORE. IT CAN BE A NICE BREAK WHEN MY CAREGIVER WAITS ON ME HAND & FOOT. HOWEVER, MARK HAS A LIFE–& SO I CAN BE ALONE. THAT CAUSEES ME 2 CHALLLENGE MYSELF & BE CREATIVE. 4 EX., MARK WAS IN THE ROOM W/ME,T THOUGH I COULD QUICKLY GET MARK'S ATTENTION & HAVE AN EASIER TIME, I HAVE DECIDED 2 TAKE ADVANTAGE OF BEING ALONE: I WAS TIRED OF WAITING 2 C SOME CDS, SO I LEARNED 2 DO IT MYSELF! ANOTHER TIME, I LEARNED 2 USE MY COMP. KEYBOARD AS A WEIGHT, 2 GET KLEENEX OUT 2 WIPE MY NOSE. IT'S TONS FASTER 2 CLOSE A CD DRAWER ON MY COMP., SWITCH A LT. SWITCH, OR OPEN MY ELEVATOR DOOR IF SOME1 ELSE DOES IT-SOMETIMES MARK DOES. BUT I LIKE 2 TRY SOMETIMES -THESE R THINGS I CAN DO & OTHER THINGS I ONLY LEARN I CAN DO BY CHALLENGING MYSELF.
• I CAN'T BE MOM. AS THE KIDS GET OLDER, THIS CHANGES. ZACH READS MY ASL REAL WELL (EVEN JESS DOES WELL ENOUGH 2 GET BY, IF SHE FEELS PATIENT, & FIA CAN READ HER NAME OR WORDS LIKE 'STOP' OR 'SORRY'), JESS & FIA CAN READ (SO I TYPE), & FIA GUESSES MY DISCIPLINE AMAZINGLY WELL, SO I CAN ANSWER YES/NO, INSTEAD OF SPELL IT (I LOVE WHEN FIA ASKS, "GO 2 TIME OUT?," "SHARE?," "STOP?," OR "SAY SORRY?"). WE WATCH SHOWS, PLAY GAMES, ETC. FIA WAS YOUNG ENOUGH WHEN I STROKED, SHE DOESN'T KNOW ANY BETTER THAN HOW I COMFOR IF SHE'S HURT. YES, SOMETIMES I WISH I COULD SAY OR DO MORE 4 THE KIDS, BUT I WANT 2 RAISE THEM! I'M STILL MOM! I CAN'T READ A BOOK, BUT THEY CAN SHOW ME PICTURES! I CAN USE MY LASER POINTER 2 POINT & DIRECT WHAT 2 CLEAN. I CAN LET OTHERS DO WHAT I CAN NOT.
• MY HOUSE IS MESSY. MY CAREGIVER HELPS (BUT ONLY 2X/WK.-LITTLE KIDS REQUIRE DAILY ATTENTION), WE HAVE A CLEANER; BUT A HUGE PART IS I HAVE 2 BE SUPER ORGANIZED (LUCKILY, THAT'S ALWAYS BEEN A QUALITY OF MINE), MARK INSISTS MY KIDS RESPECT ME (MY FAV. PHRASE IS THAT THEY NEED 2 LISTEN 2 ME MORE THAN DAD; & THEY KNOW THE REPURCUSHION IS WORSE THAN IF THEY DIDN'T LISTEN 2 DAD), & MY KIDS R WELL-BEHAVED & MORE SELF-SUFFFICIENT & RESPONSIBLE THAN OTHER KIDS THEIR AGE.
• I ENJOY SOLUTUDE. UNFORTUNATELY, IT'S A NATURE OF THE CONDITION. I USE THE COMP. 2 COMMUNICATE, DO MY CHURCH CALLING, VISIT TEACH (CHURCH), READ/EDUCATE MYSELF, JOURNAL, SCRAPBOOK, ETC.-BASICALLY EVERYTHING! I DO OCCASIONALLY PREFER PRIVACY 2 DO SOME OF THE STUFF–SOME SHOPPING (BUYING GIFTS) & JOURNAL ENTRIES REQUIRE PRIVACY, & LIKEWISE EMAILS (SO I'M NOT INTERRUPTED B4 I FINISH A THOUGHT) & I TYPE SLOW (1 KEY AT A TIME). BESIDES, I PREFER NOT 2 SIT & DO NOTHING OR WATCH MINDLESS TV! ALSO, I CAN HAVE TONS OF HELP FROM OTHERS & STILL GET LONELY (IT'S NOT LIKE I EVER HAVE DEEP CONVERSATIONS-I CAN'T TYPE OR SIGN IT ALL) OR SAY SMALL SIDE-REMARKS (ESP. IF IT NEEDS PUNCTUATION OR VOICE INFLECTION). ALSO, I RARELY ENJOY GROUP (2 OR MORE) CONVERSATION, BECAUSE I AM OFTEN NOT SEEN SIGNING OR HEARD MAKING NOISE 4 ATTENTION (I REMEMBER BEING JEALOUS MY DEAF FRIENDS COULD GET ATTENTION BY MAKING NOISE). IN ADDITION, I CAN'T SAY A GREAT MAJORITY OF WHAT I THINK THE SAME-WORDS SEEM LOST UNTIL I TYPE, SOMETIMES (PROB. SINCE I'M OUT OF PRACTICE). IT INCREASES FRUSTRATION.
• I'M EASY 2 READ (W/MY EMOTIONS). HOWEVER, WHEN I THINK I'M SMILING MY BIGGEST, I APPEAR AS MAD AS CAN BE! WHEN I TRY HARD, I APPEAR MAD WHEN I TRY HARD, I TURN & LOOK LEFT, & PEOPLE THINK I C SOMETHING. OR, IF I'M HOWLING & CRYING, IT COULD BE PRIDE 4 A KID OR A SIMPLE FRUSTRATION, WHICH EVERY1 EXPERIENCES, BUT IT APPEARS A HUGE DEAL!
• I HAVEN'T CHANGED FROM THE 'JENNY' I WAS PRE-STROKE. I AM STUCK IN A MOLD. MY SISTER, MISSY, HAD THIS HARDEST, AS SHE WAS THERE WHEN I 1ST CAME HOME FROM THE HOSPITAL, BUT I'VE ADAPTED SINCE THEN & HAVE HAD AMAZING AMOUNTS OF PATIENCE THRUST UPON ME, & THINGS I WANT DONE "NOW," I'VE LEARNED 2 WAIT 4! THE 'JENNY' I WAS PRE-STROKE IS BUILDING BLOCKS 2 THE 'JENNY' I AM NOW!
• I'M MENTALLY CHALLENGED. I'M SUPER SLOW PHYSICALLY & HAD A BRAIN INJURY, BUT I HAVE A COLLEGE DEGREE & TAUGHT EL. ED., SUBBED, & TUTORED!
• MY MEMORY IS FINE! I REMEMBER EVERYONE! I DON’T HAVE DEMENTIA!
• SINCE MY LEFT SIDE CAN NOT MOVE, THERE'S NO FEELING. BUT I CAN FEEL EVERYTHING! (JUST CAN’T MOVE AROUND A WHOLE BUNCH.)
• I CAN DO ANYTHING I WANT 2. IT SEEMS LIKE I SIT IN MY COMFY CHAIR ALL DAY & "DIRECT TRAFFIC" BY FINGERSPELLING, BUT REALLY, I GET 2 DO VERY LITTLE I WANT 2 DO. I WOULD LOVE 2 EAT SNACKS WHEN A CRAVING HITS. I'D LOVE 2 POTTY MYSELF. I'D LOVE 2 NOT HAVE 2 RELY ON OTHERS 2 ACCOMPLISH STUFF (LIKE INSERT A BLANK CD 2 BURN STUFF ONMY COMP. 2 DEAL W/A COMP. VIRUS THE MIN. I C THE NEED INSTEAD OF WAITING UNTIL I CAN GET HELP OR WAITING 2 FINISH A TASK I WOULD'VE STARTED & FINISHED YEARS AGO.)
• U MUST TALK LOUD OR YELL. I CAN HEAR! THAT IS ANOTHER SENSE IN TACT, IN ADDITION 2 TOUCH!

WED. I HAD MY BEST MUSIC THERAPY SESSION EVER! I WAS SO EXCITED, I HAD 2 CONTROL FEELINGS OF EXCITEMENT BECAUSE I ALMOST CRIED WITH JOY! SO WHAT WAS IT? I WAS SINGING VOWEL SOUNDS WELL & ACTUALLY MATCHING THE PITCH AS IT WENT UP & DOWN. B4 MY STROKE, I WAS A HUGE SINGER. MUSIC WAS IMPORTANT—PLAYED PIANO 10 YEARS, DANCED SINCE I WAS 5 IN MANY STYLES, VOICE LESSONS 4 LIKE 8 YRS., ALL-STATE & COLLEGE CHOIRS, TRAVELLED 2 EUROPE W/A CHOIR, A MUSIC MINOR, ETC., SO, AS A SINGER & 1 WHO DESIRES MOST 2 TALK AGAIN, THIS WAS HUGE & COMPARABLE 2 THE JOY I FELT WHEN I STARTED WALKING IN SWIM THERAPY—. I ALWAYS HEAR PITCHES IN MY HEAD, BUT CAA'T VOCALIZE THEM—IT'S INCREDIBLY FRUSTRATING 4 AN EXPEIRENCED MUSCIAN 2 NOT SING WHAT IS HEARD! THERE'S AN LDS CD BY MICHAEL MCCLEAN CALLED THE 4GOTTEN CAROLS. I'VE ALWAYS LOVED IT, BUT CAN NOW RELATE 2 THE ANGEL SAYING, "IF U COULD ONLY HEAR THE MUSIC IN MY HEAD!"

SO WHAT BROUGHT THIS ABOUT SO I CAN RECREATE IT? NOT SURE. COULD BE A MIXTURE OF THINGS:
• I STRETCHED MY VOCAL CHORDS BY EXTREME PBA LAUGHTER & CRYING B4 IT (& I KNOW I HAVE 2 TYPE 2 STRETCH OUT & LIMBER UP MY FINGERS SO THEY'LL MOVE BETTER 2 PLAY MY PIANO/SYNTHESIZER)
• THE TIME 4 SESSIONS NOW IS IN MY BETTER "AWAKE" HRS.
• I TILTED FAR BACK, SO I GOT TONS MORE AIR
• NO1 WAS THERE (I GET PERFORMANCE ANXIETY), EVEN THOUGH I FIGURED MARK WAS LISTENING (HE WAS!)
• WE REALLY WORKED ON BREATHING EXERCISES B4