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!
Recovery
THERAPY
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
WED.
4GIVE ME 4 NOT WRITING SOONER, BUT THE TIME I USEED B4 TO WRE HAS SUDDENLY BECCOME "GIRL TIME" W/MY GIRLS. I’M FINE W/THAT, BUT NO GAURANTEES WHEN I’LL WRITE.
SO WHAT CA THE GIRLS POSS. DO WITH ME? A FAV. IS ARGUING 2 SIT ON MY LAP AS THEY PLAY COMP. GAMES, WRITE EMAILS, OR WATTCH A MOVIE W/,E. SINCE FIA CAN READ & JESS (WHILE IMPATIENT) IS BETTER AT READING MY ASL, COMMUNICATION IS LESS A BARRIER 2!
STILL, LIFE W/1 HAND CAN BE EXHAUSTING. IN ADDITION 2 THE EXPECTED WOES (BEING ON THE RT. SIDE 2 PICK UO THINGS LIKE THE REMOTE; 2 DO ANYTHING, LIKE PUSH A BUTTON; OR 2 ACCOMPLISH ANY TASK, LIKE PLAYING THE PIANO OR TYPE-I BET I HAVE THE STRONGEST INDEX FINGER!), THERE’S ALSO STUFF LIKE THIS:
WHEN I GO SOMEWHERE I NEED 2 ACKNOWLEDGE PEOPLE, LIKE CHURCH, I HAVE A CHOICE 2 NOD A HELLO & KEEP DRIVING, OR I CAN STOP DRIVING & USE THAT HAND 2 WAVE HELLO.
IN ORDER 2 RESPOND VIA ASL, IT’S THE SAME. 4 EX., RECENTLY WHILE ON THE COMP, I WAS HIGHLIGHTING TEXT (WHICH TAKES QUITE A WHILE & REQUIRES A LOT OF INTENSE FOCUS W/DOUBLE VISION). AT THE SAME INSTANT, I WAS ASKED A QUES. THAT REQUIRED MORE THAN A YES/NO RESPONSE. I HAD 2 CHOICES: 1. I CAN APPEAR 2 BE RUDE & WAIT 2 ANSWER, SO IT SEEMS I’M IGNORING SOME1 WHO WAITS 4 A RESPONSE, BUT, MEANWHILE MY HEAD IS SHOUTING, "1 SECOND!" 2. ANSWER VIA ASL, THEN START AGAIN 2 DO WHAT I WAS TRYING 2 DO (IN THIS CASE, HIGHLIGHT TEXT).
STILL, I’M GLAD I HAVE 1 HAND (I WASN’T SUPPOSED 2) & MY RT. HAND AT THAT (DID U KNOW MY LEFT HAND, & NOT MY RT. HAND, USED 2 MOVE?). SO MUCH NEEDS MY RT. HAND (AT CHURCH & THANKFULLY, WHILE SLIGHTLY AMBIDEXTROUS, I WAS RT. HAND DOMINANT SO I DIDN’T HAVE 2 START FROM SCRATCH 2 LEARN 2 WRITE & TYPE)!
PBA WEEK
THE OTHER WEEK WAS A PBA WEEK. I WAS ON THIN ICE ALREADY, AFTER MY COMP. VIRUS & FROM FIGHTING A "PITY PARTY," THEN HAVING 2 WAIT 4 OTHERS, WHICH ONLY I SAW THE URGENT-NESS & EVERY PASSING MINUTE COULD RESULT IN A LOST STUFF VALUABLE 2 ME!
USUALLY, I DO PRETTY WELL CONTROLLING IT, BUT THIS LAST WEEK, I WAS BOMBARDED BY STRONG ENOTIONS, & ANY EMOTION, BIG OE SMALL, CAUSES LAUGHTER OR TEARS. MY WORLD CAN APPEAR SHATTERED, & I'M FINE, PROUD, OR SHOWING RELIEF. IF I'M SOOTHED, IT CAN ME CAN MAKE IT WORSE, AS TEARS OF EMBARRASSMENT R SHED. MARK KNOWS THIS ALL 2 WELL, & PROB. APPEARS HEARTLESS AT TIMES, AS HE SEEMS 2 LET ME WORK IT OUT ALONE, THOUGH I ACTUALLY APPRECIATE IT. BY GOING AGAINST HUMAN NATURE 2 SOOTHE UNCONTROLLED LAUGHTER OR TEARS, HE'S ACTUALLY HELPING ME!
BUT SOMETIMES THE OUTCOME DOESN'T PORTRAY HOW I FEEL. (LIKE, I CAN BE FURIOUS, BUT C A SMILE THAT TRIGGERS A LAUGH, WHICH CAN BE VERY FRUSTRATING!) I SEEN AN EASY EMOTIONAL TARGET 2 READ, UNTIL THIS HAPPENS!
I THINK THE FACT I CAN VISUALIZE SOMETHING, EVEN IF IT HASN'T HAPPENED, CAN MAKE MY PBA WORSE. IT ALSO HELPS 2 "PREP" 4 IT.
SO, HERE'S A VERY SMALL AMOUNT OF TRIGGERS, RECENTLY:
1. I HAD A CLUE IT WOULD HAPPEN—IT'S BEEN SO LONG—BUT NO IDEA WHEN IT'D HAPPEN: I WAS FINALLY RELEASED FROM MY CALLING AT CHURCH! FOR ALMOST 2 YEARS, I HAVE BEEN AN ASST. ACTIVITY DAY LEADER (I PLANNED & DID A MID-WEEK ACTIVITY 2X/MONTH 4 GIRLS WHO R 8 & 9 YEARS OLD, IN MY CASE–THOUGH IT STARTED 8-12 YEARS OLD). NOW, I’M WARD HISTORIAN, WHATEVER THAT MEANS! THEY EXPLAINED STUFF, BUT THE CALLING IS NEW 2 ME…I KNOW THE GIST (TAKE A BUNCH OF PICTURES, USE SCRAPBOOKING (MAYBE), USE R WARD WEBSITE, KEEP A RECORD OF LOTS—..), BUT HOW? I PREFER NOT 2 ATTEND ACTIVITIES (I CAN’T BE SOCIAL OR PARTICIPATE & JUST SIT IF THEY EAT), & I HAVE ABSOLUTELY NO CLUE WHO’S EVEN IN R WARD, LET ALONE CHANGES IN CALLINGS!…
THE GOOD THING IS I NOW HAVE SOMETHING 2 DO AT ACTIVITIES (TAKE PICS, BUT I NEED A HORN OR SOMETHING IF STOOD IN FRONT OF) & MARK IS WARD CLERK, SO HE KNOWS STUFF I’M CLUELESS ABOUT.
2. 8/8 WAS MY B-DAY. B4 MY STROKE I WAS A CAKE DECORATOR. MARK HAS KEPT THAT ALIVE & REALLY DEVELOPED THAT TALENT. EVEN IF I WAS WELL, I'LL ADMIT I COULDN'T MAKE THAT CAKE, AS IT USED A WOOD STAND (SO HE HAD 2 USE HIS WOODWORKING TALENT, WHICH I NEVER HAD!)
I LOVE DR. SEUESS, SO THERE WAS A DR. SEUESS THEME. EVER READ THE CAT IN THE HAT? ALL THESE CRAZY "THINGS" COME OUT THE HAT. I WAS THE CAT. THANKS 2 SHIRTS BOUGHT AT R REUNION, ALL NIECES & NEPHEWS WERE "THINGS."
3. 8/9—MY FRIENDS GAVE ME A SURPRISE B-DAY PARTY. I WAS REALLY SURPRISED! TURNED , SINCE I'D HAD COMPUTER PROBLEMS & HAVE ISOLATED MYSELF (WHICH I STILL SHOULD, BUT CAN’T HANDLE MORE). I WAS WAITING 4 A BACK-UP THAT SHOULD HAVE BEEN DONE AT 6 PM, BUT TOOK ALL NITE. PLUS, I NEEDED IT–I WAS GRUMPY ON MY B-DAY.
THURS.
IN JR. HIGH, WE WERE ASKED 2 RUN A MILE AT THE BEG. & END OF THE YEAR. R GRADE WAS BASED OFF R IMPROVEMENT. GYM WAS NOT MY FORTE, BUT I WANTED STRAIGHT A'S. SO 2 ENSURE AN "A", THE 1ST 1 I WALKED (& JOGGED IF I SAW THE TEACHER). THE 2ND I REALLY RAN. REMEMBER THIS: "MY KIDS PUSH ME—I WON'T LIE—THERE R DAYS I FEEL DONE TRYING, BUT THEN I REMEMBER THINGS LIKE A CARD FROM ZACH 2 KEEP EXERCISING, OR A WISH 2 SANTA THAT I CAN WALK". NOW, EVERYTIME I TRY 2 "WALK," MY “PERSONAL TRAINER” (MARK) WON’T LET ME! I THINK MY 1ST 30 YRS. OF LIFE, I "WALKED," SO I BETTER "RUN" NOW!
JENNY LYNN'S NEWS 