HAVE BEEN BUSY DEALING W/A COMP. VIRUS & ITS AFTER-AFFECTS SINCE LAST WED. 4 ME, IT IS LIKE LOSING MY PHONE, PURSE, PLANNER & WALLET. BUT EVEN MORE FRUSTRATING, WAS THAT IF I NEEDED HELP, IT WAS NEVER WHEN I WANTED IT, AS NO1 SITS WAITING 4 MY BECK & CALL (IT’D DRIVE ME CRAZY ANYHOW!) LIFE WENT ON AS NORMAL 2, SO IF I WANTED 2 HURRY DOWN 2 MY COMP. IN THE MORNING, 1ST I HAD 2 ENDURE MORNING ROUTINES (SO, IF I WOKE AT 4 AM, I DIDN’T C MY COMP. UNTIL 9/10 AM! BUT THE BENEFIT WAS THAT DURING THOSE QUIET EARLY MORNING HOURS, I WOULD DISCOVER SOLUTIONS 2 TRY OUT).

ON A BETTER NOTE, DESPITE MILD CONGESTION & ABOUT 2 COUGHING FITS/DAY, I’M RELATIVELY HEALTHY. WHEN I WAS SICK, I HAD AN UPPER RESPIRATORY THING. I WAS TOLD IT LASTS A MONTH. SO ABOUT 2X/DAY, I BUILD UP 2 A COUGH.

ANYWAY, 4 OTHERS, JUST A BAD COUGH. 4 ME, W/NO TRACHE, IT COULD BECOME SERIOUS, EVEN DEADLY. 2 SUNDAYS AGO, I FELT FINE, BUT ONLY WENT 2 SACRAMENT (THE 1ST HR. OF 3 HRS.AT CHURCH, SINCE I WAS W/MY FAM. THAT HR.). I FELT FINE, BUT KNEW OTHERS WOULD FREAK, ESP. SINCE I CAN’T COVER MY MOUTH.

BEEN THINKING. I BEIEVE IT TAKES CERTAIN PEOPLE 2 BE CAREGIVERS OF ANY DISABILITY & ALSO 2 BE A STROKE SURVIVOR. MY STUBBORNESS & MY STRONG WILL 2 BE HEALTHY & ALIVE R TRAITS NEEDED 2 BE A STROKE SURVIVOR. AS 4 CAREGIVERS, IT HELPED ME THIS WEEK THAT MARK SEEMED 2 POSSESS COMP. KNOWLEDGE I DID NOT HAVE. BUT THE CHARACTER TRAIT I WILL COMMENT ON THAT MARK POSSESSES IS ABUNDANCE IN HIS CREATIVITY. HE IS NEVER CONTENT 2 SIMPLY MAINTAIN THE STATUS QUO. REGARDING MY CARE. HE IS CONSTANTLY INVENTING NEW & BETTER WAYS OF DOING THINGS (LIKE, I HAVE A COMP. DESK I CAN JUST ROLL INTO & BE COMPLETELY INDEPENDENT W/1 THING –QUITE THE FEAT, CONSIDERING MY VERY LIMITED CAPABILTIES). HE HAS INVENTED DIFFERENT ITEMS THAT I THINK COULD BE PATENTED THAT HAVE MADE HIS CARING FOR ME & THE QUALITY OF MY LIFE SO MUCH BETTER. I HAVE NOTICED SEVERAL CAREGIVERS OF VARIOUS DISABILITIES HAVE THIS SAME TRAIT, & BECAUSE OF IT, NO1 UNDERSTANDS ME LIKE MARK DOES!

WHEN I WAS 1ST RE-INTRODUCED 2 THE COMP., STUFF WAS NEARLY IMPOSSIBLE. I RECALL WRITING LIKE A 3 SENTENCE E-MAIL THAT TOOK 3 HOURS. MY DOUBLE VISION IS NOT ALL BETTER, BUT A FAR CRY BETTER. THIS WEEK MY EYES DECIDED 2 MISBEHAVE 4 A FEW HOURS OFF & ON, & I REVERTED BACK 2 THE OLD, FRUSTRATING WAYS. I’M SO VERY GRATEFUL THAT, THOUGH MY VISION IS STILL BAD, IT BEHAVES LOTS BETTER & NOW I HAVE A KEYGUARD–WHICH IS ESSENTIALLY A PIECE OF PLASTIC SO MY HAND CAN REST–2 EASE TYPING.

SPEAKING OF COMP.: AWHILE AGO, MARK INSTANT MESSAGED (IMed) ME FROM THE UPSTAIRS, & I WAS DOWNSTAIRS. A BIT LATER HE APPEARED, BUT I ODDLY GOT AN IM FROM HIS SCREENNAME. WE PLAYED ALONG (IT WAS ZACH, & HE FOUND OUR CHAT HILARIOUS—WE DID 2!)

ZACH EXPLAINED IM & R CHAT 2 JESS, WHILE I WAS GONE. WHEN I RETURNED, IT WAS JESS’ TURN 2 IM ME, DISGUISED AS MARK. FIA ACTUALLY TRULY LEARNED 2 READ THAT DAY AS SHE SAT BY JESS OR I & READ, BY SOUNDING OUT, R CHAT (& SUGGESTING RESPONSES, WHICH SHE WAS THRILLED IF THEY WERE USED.)

THIS WAS SIGNIFICANT BECAUSE I GOT 2 INTERACT & BE SILLY W/MY KIDS. THE LAST 3 YRS., THERE’S BEEN LITTLE I CAN VERBALLY DO & INTERACT “SILLY” W/MY KIDS. SURE, WE PLAY GAMES, EMAIL, & ZACH HAS BECOME A GREAT INTERPRETOR, BUT “THE FUN” IS NEVER THERE, & I MISS THAT. APPARENTLY, THEY DID 2.

SINCE THEN, I’VE SEEN GREAT CHANGES IN THE KIDS. I’M SOME1 THEY KNOW AGAIN, ASIDE FROM MY PHYSICAL APPEARANCE. THEY DID WELL B4, BUT IT’S NOW LIKE THEY KNOW MY INNER THOUGHTS, THAT I WISH I COULD SAY, BUT ONLY THINK:

ZACH HAS MADE THE BIGGEST STRIDES & THRILLED ME. PRIOR 2 MY STROKE, WE WERE SO CLOSE & SINCE IT, I’VE SEEN HIM TRY, BUT R BOND HAS BEEN DIFF. BUT, DEEP DOWN, HE KNOWS ME BEST SINCE HE HAD THE MOST PRE-STROKE YEARS. NOW, HE’S MORE AFFECTIONATE AT SPORADIC TIMES (IT’S SO NICE 2 BE HUGGED JUST BECAUSE I AM THERE) & FUN 2 TEASE WITH. HE SEEMS 2 GET WHAT I’M SAYING, W/O ME SIGNING A WORD.

JESS IS GETTING REALLY GOOD AT READING MY ASL. SHE HAS UPGRADED FROM COMMON PHRASES (“HAVE A GOOD DAY”) & 1 WORD ANSWERS. SHE RARELY CALLS ZACH OVER 2 TRANSLATE NOW. SEVERAL SITUATIONS HAVE ATTRIBUTED 2 HER GROWTH IN ASL, BUT IT BEGAN WHEN WE IMed. SHE HAS BEEN DETERMINED 2 BE “BIG” & COMMUNICATE W/ME. SEEING ME CHAT, HELPED 2 FAMILIARLIZE HERSELF W/HOW I SPEAK. SHE ALSO HAS MY STUUBBORN STREAK & HAS STUUCK IT OUT WHEN SHE WAS CLOSE 2 CAVING.

FIA HAD THE LEAST 2 CHANGE R RELATIONSIP, SINCE SHE ALREADY TRULY UNDERSTOOD ME POST-STROKE. BUUT SHE’S MIMICED HER OLDER SIBLINGS. SHE & I WERE DELIGHTTED WHEN SHE SOUNDED OUT THE ASL LETTERS I SPELLED TO A 3 LETTER WORD & FIGURED IT OUT! SHE ACTUALLY KNEW THE WORD I SPELLED!

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.

REMEMBER A WHILE BACK, HOW I DIED LAUGHING BECAUSE MARK WAS SO EXCITED & WANTED 2 SHARE SOMETHING W/A GUY FRIEND, BUT NO1 WAS HOME, & WHEN HE REACHED SOME1, HIS PHONE CONNECTION WAS BAD, SO I SIGNED,: "WELCOME 2 MY WORLD!" MY LAST POST COMPLETELY RESEMBLES THIS. MY POST IS LIKE FINALLY HAVING A GOOD PHONE CONNECTION WAS 4 MARK SINCE WE BOTH FINALLY SHARED THE MESSAAGE WE WERE DYING 2 SHARE.

DIFFERENCE IS, I DIDN'T SHARE EVERYTHING. IN FACT, I RARELY SHAARE STUFF: I PICK & CHOOSE. MY 1 TYPING INDEX FINGER CAN'T, IN ANY WAY, KEEP UP W/MYY BRAIN! IT IS REALLY HARD TO HAVE AN OUTLET FOR ALL OF YOUR THOUGHTS WHEN YOU CAN’T SPEAK OR EVEN TYPE AS FAST AS THE SPEED-OF-THOUGHT! SO, I DON'T TRY. OFTEN, I COMPOSE ELABORATE EMAILS IN MY HEAD THAT R NEVER WRITTEN.

BTW, I’M SICK. BUT NO BIGGIE–OTHER PEOPLE WOULD SAY THEY HAVE A COUGH. REALLY IT SOUNDS WAY WORSE THAN IT IS. REMEMBERHOW I SAID "I'M SO GREATLY AFFECTED BY SOMETHING AS SIMPLE AS A SORE THROAT." IT'S TTRUE! IN MY 1ST HOSPITAL, I HAD A “PERCUSSION BED.” ESSENTIALLY, IT COUGHED 4 ME & LOOSENED PHLEM THAT THEY THEN SUCTIONED OUTMY TRACHE. I BUILD UP UNTIL I’M FORCED 2 COUGH, BUT THE PHLEM STAYS & AGAIN STARTS THE CYCLE 2 PREPARE 2 COUGH, SINCE I DON'T HAVE A TRACHE & I'M NOT SUCTIONED. & THE WORSE I SOUND, THE CLOSER I AM 2 COUGHING! BUT MINI VICTORY, & LOTS GOES 2 GOD: I CAN COUGH & EXPELL PHLEM! I CAN FIGHT! I’M WAY BETTER SITTING, RATHER THAN LAYING (POOR MARK CAN AGREE 2 HOW NOISY I GET), BUT I SOUND DREADFUL B4 I COUGH.

I'VE ALSO BEEN MORE VOCAL LATELY (POOR MARK, AS HE WELL KNOWS, I'M MORE VOCAL LYING DOWN IN BED—WHERE I HAVE LESS PRESSURE ON MY STOMACH MUSCLES 2 TAKE THE REQUIRED BREATH). I ALSO HAVE A HARDER TIME SAYING SOMETHING IF I TRY 2 SAY IT, BUT THE OPPOSITE IS ALSO TRUE. (REMEMBER, I WAKE BETWEEN 4-6 AM & TRY 2 QUIETLY LAY THERE—& EVEN SOME1 WHO CAN'T SPEAK, IRONICALLY, I CAN BE LOUD–& THE QUIETER I TRY 2 B, THE LOUDER I AM!)

WHEN I SPEAK, SOMETIMES IT'S HARD 2 RECOGNIZE, SINCE I MOSTLY USE VOWELS, BUT HERE R A FEW NEW THINGS I'VE SAID THIS WEEK: AMEN (A-EN), LOTS ,ORE OF "UH-HUH'S," MOVE (OVE), ,"ETC. I OFTEN SAY I LOVE U, (THIS COMES SOMETIMES AS I SIGN IT—MY KIDS KNOW THE SLURRED "I O U" WELL), THANK U (THIS COMES SOMETIMES AS I SIGN IT), HI (I), BYE (IE), FIA (IA), MARK (MA), DONE (ONE, BUT SOUNDS LIKE A GRUNT)— I HAVE BEEN SAYING "OW" 4 A WHILE. (U'D BE SHOCKED HOW MUCH MORE THINGS HURT WHEN U CAN'T SAY "OW!")

I RECALL BEING JEALOUS OF THOSE WHO SIGN BECAUSE THEY COULD GRUNT 2 GET ATTENTION. SOMETIMES I CAN NOW DO IT, 2. IT'S WONDERFUL, SINCE MY HAND IS RARELY NOTICED. I HAVE A SPEAKING PROGRAM ON A LAPTOP, BUT HARDLY USE IT. THE KEYBOARD IS GREY W/WHITE LETTERS–HARD 2 C (NOT ENOUGH CONTRAST), I TYPE LABORIOUSLY SLOW, & HATE MOVING W/IT BECAUSE THE LAPTOP FEELS LIKE IT WILL FALL. STILL, EVEN THAT HAS 2 BE HANDED 2 U &, 4 ME, B SET UP W/A KEYGAURD (WHICH IS ESSENTIALLY A PIECE OF PLASTIC SO MY HAND CAN REST WHILE I TYPE & NOT PUSH KEYS–IT HAS HOLES DRILLED FOR KEYS. )

I KNOW IT'S OFTEN SAID THAT U'LL NEVER GET MY SPEAKING VOICE BACK IF I DIDN’T USE IT. LOOK AT NEW BABIES. WHAT ISN'T SAID IS U'UR (YOUR) VOICE IS WEIRD AND U'RE EFFORTS R UNRECOGNIZABLE (HOWEVER, IF I RARELY SPEAK, THE WORD IS RECOGNIZED BY CONTEXT CLUES, MOTIVATING ME 2 KEEP TRYING 2 SAYING IT). IT'S ALSO FRUSTRATING 2 NOT B ABLE 2 MAKE THE WORDS U WANT 2. MAYBE I'M COMFORTABLE, IN AN ODD WAY, SPELLING & KNOWING MY WORDS WILL B FIGURED OUT, BUT I DO TRY 2 SAY WORDS I'VE HAD SUCCESS WITH.

MARK TOLD ME 2 “JUST TALK” (BABBLE). BUT, NOT ONLY DO I NEED SOMETHING 2 BABBLE ABOUT, BUT IF I “JUST TALK” PEOPLE FREAK & ASK ME WHAT I NEED, & THEN I HAVE 2 DEAL W/THE HASSLE 2 EXPLAIN I'M BABBLING. I KNOW I NEED 2 DO MORE, SO I “SING” & UPLOADED SONGS 2 MY COMP. SO I CAN PRACTICE “SINGING” WHEN I’M HOME ALONE.