if i MOOOO, am i really a cow?

today is the day of the ccsvi rallies across canada...i had arranged 2 rides downtown...i figured a primary ride and a back up should get me where i need to go. WRONG!!! my back up ride sent me as text last night saying she feels under the weaher and some other stuff and thats cool cause i refuse to put people out or force them to do things. my main ride i havent heard from which probably means i wont see him either. that leaves me 2 choices....1) stay my ass at home  or  2) drive jen to work then come home, get ready and drive my own hump to the rally. jen is telling me she only likes option #1 and that im scary to drive with and cant do anything without help (like unloading/loading the wheel chair from the van). so here on the big day i am taking the hard road downtown and doing this alone.

as i sit here proud of my independence i am starting to wonder about what happens (not if but) when i have to go pee...i have a bottle to use but...you know...i will be outside in font of people...i know i know like that will bother me and it wouldnt if i had jen with me but i wont so ya im a bit sketchy...and what if its raining? does it still happen? its raining as i type but it says sunny till this evening...REGARDLESS of what happens i will be filming the days events and i shall report back to you soon,

btw...the "college for physicians and surgeons" has killed most ccsvi testing in canada, for no good reason. and im on the waiting list in poland for the "liberation treatment" but its booked till 2012 so in a year and a half i can get fixed. thank you so much canada its nice to know you have my back. talk soon peeps!!! wish my krippled ass luck...I AM GOING TO NEED IT!.... MOOOOOOO! i know im not a cow but i needed a catchy title so i HAD to throw this in.


§TëVë™

**update** my original ride pulled through @ 7:25am i got the call he would be meeting me at vic park @ 401....jen can breathe!!!

no funnies...just a look in to my heart and a plea for help.

i just made my appointment...im getting my scans done for ccsvi on Aug 10, 2010. i should be happy and excited but it makes me scared and sick to my stomach. i dont know why...my thoughts and mental functions are starting to go strange...i am reading words and not getting the same meaning as normal people...my mind is a fog and my head feels heavy...nothing makes sense anymore. i want to hit something and i would damn it, if i had the strength....im so angry and full of rage and im incapable of venting it. this is killing me inside, its like i dont know who i am anymore...i feel so fake. i want to run away but i cant cause my damn legs DO NOT WORK!!!!!!!!

i can now officially STRESS OUT about finding $1250 to pay for the scans by aug 10 not to mention hotel and food expenses...oh and fuel.... it all seems hopeless. now here is where i totally leave my comfort zone and do something that goes against all that i am...

i need help my friends and the last thing i ever want to do is ask for help but...my health is getting worse but there is a chance that i have a curable condition called "chronic cerebrospinal venous insufficiency" or CCSVI. this condition causes the symptoms know as "multiple sclerosis" and is evident in 80% of people with those symptoms. i would like to find out if i am in the 80% that have ccsvi, this would set in motion the wheels toward getting the "liberation treatment". the liberation treatment is where the ms is at least stopped and most people regain balance, vision and the ability to recoup their energy quickly along with losing the soul killing spasms that keep me awake and wanting to cut my damn legs off.

im not asking for money. i dont know what i am asking for....maybe help by whatever means you may have available to you...time, talent, ideas...whatever you want to lend im open because i have 3 months to get this done. thanks for reading my plea and for any help you may lend.

§TëVë™

pour racing fuel on me and light the match!!

there are many things that really piss me off...one example is slash's new cd...its really good and as i sit and listen to it and really get lost in the sound of the amps, the touch he has on the strings, the chord progressions and raw emotion of the playing, the anger starts to grow...i can feel the rage build and it gets me to the point of tears. tears for a path that i really enjoyed in my life (even though my entire guitar playing career was plagued by MS) playing with volume and string gauge... the power trip you would get by using drop D tuning...the chug of the e/d string when muted by your palm...the thousands of fans cheering as you tear a wicked solo from the air (or a hundred in my case). my past...better left there in most cases but without it i am not steve and with it i am tortured...a rock and a hard place? how about repeatedly beaten by a rock till i dont want to breathe any more.

now i want to address someone...a friend of mine in the fight against this thing called MS recently had "the liberation treatment" done on her vanes in poland. i have been waiting patiently for her review of the results and how she has progressed over the last week and a bit...i want to shake this damned sickness outta my life and body...more than most things in my life but i need some info first before i commit financial suicide...so if you are the person i am talking about (here is a hint...GINGER), drop me a brief note would ya? im dying here!!!

i havent really been out in the last week to give you pictures and stuff...i was out on monday for a picnic but my camera battery was left mysteriously dead...(not really a mystery...some nob left it plugged into the computer and didnt shut the power off..(that nob was me :D) and i didnt notice till we got to the lake. before that we went to port perry and i forgot so i didnt write you anything...not like it was that interesting for writing but i took pics regardless and maybe i will post some of them up for you...or not...but you never know what might drop outta my head at any given time so keep an eye out...but i will probably send out a few group messages letting you know...by the way if you get sick of my mails let me know and i will send you double the notices...so i put one in for you...below is a panorama of the scugog beach front (did you know that dirt bag is one word...dirtbag...i checked the spelling of scugog and dirtbag was the first suggestion...now it says dirtbag is spelled wrong and that it should be either dirt-bag or dirt bag both of which have no red line under them...strange?)

i am wrapping this up for now...nascar, moto gp and wsbk are all on this weekend so i can at least pretend to smell the C12...forget the rubber pucks and ice...if it doesnt go 180mph your just playing with kids!!

§TëVë™

FUNKY COLD MEDINA, YOU KNOW THIS....MAN!!! 


its the grain of sand that causes the most agony...

when the wind at your back blows you over

and today i signed up for round two of  "mommies in the park". last time i was out with them i had fun (despite peeing my pants) so i figured i would giver a second go. what could go wrong on such a beautiful morning?

lately i have been regaining a lot of movement in my left leg...i have no clue why, but i can lift it with relative ease up to about a foot off the ground. this new found control has made getting up and down the stairs just a pain in my ass...as opposed to a royal pain in my ass. so i was happy to exploit my new found mobility in a real world scenario (because to this point i have been limited to the house) when jen asked if i would like to go. so i had breakfast...a banana(cut in to pieces so i can eat it with a fork(its easier, leave me alone)), 2 slices of rye toast with cheddar cheese and a coffee brewed by the best coffee maker in the world...can you SEE where this is headed? we went downstairs to get ready and i took this opportunity to go drain my bladder (hmmm) after which we departed for "mommies in the park".

we left some time after 9am which i thought peculiar but jen stated "well, it starts at 9:30" and what do i know, im just a tag-a-long right? we took rosland west to past thickson to a little park on the south side. as we drove along the little side street i noticed an empty parking lot ( this is a bad sign...being the first one means waiting for people you know to show up...i dont know anybody really). because i have my new mobility i decided to walk and forgo the chair...we have a video of me walking with my cane and even jumping. i was good for about 25 minutes then the sun started to get hotter...not even hotter but being in the direct sun and i started to lose my energy. when the first fall happened my ego was still in tact (not many people in the park yet) so i kept on going but decided to sit on a bench to recoup some energy...but i was in direct sun light so it really didnt help all that much. i did happen to notice however that i was starting to feel an urge to drain...

i sat for a while on the bench watching the mommies playing with the kids for 10 or so minutes, but i knew i needed to get out of the sun or i was doomed. i decided that sitting in the van which provides shade would be best in this situation so i stood up and started to drag myself to the van...thats when my left leg buckled and i dropped to the ground like a rock...flat on my back...this time however the park was quite full and there were spectators for my halftime wipe out...some mommies asked if i needed help...but you see i am a proud man and i DO NOT  like asking for help, so i struggled to get up myself but by this time i was sooo aggravated by my crashes it was way more difficult than i thought and i used my remaining energy to get up and to the van where i remained for 15 minutes with a now ripe bladder. so i texted jen that i needed to go pee and thats when i noticed there were no public washrooms and that we were going to have to take my ass home from whitby to oshawa. i was not impressed.

**this is a link to the video i made. i wasnt finished putting it together when i wrote the blog so i had no idea what to expect when i viewed the footage. it was very revealing to me about how much my attitude can change in the course of 40 minutes. it also shows how funny i make most circumstances seem in writing that when you see my face it says otherwise...im sorry i didnt hide my defeat very well but shit happens i guess...its a funny watch anyway so please enjoy. KING OF THE WORLD! even if its only for a second.

§TëVë™

the male sex organ doesnt really fit...

many things upset my composure. as i type i am bitching to jen about the what seems like 10 different sets of cordless phones we have in our house....you see...after i typed the opening sentence, somebody called the house and a chaotic array of silly generic preprogrammed rings pulled my attention away from my line of thought...and thats aggravating and it set the calm off course. big breath...

i would love to say the big breath helped but it did not...imagination movers is on and im distracted by the music...not that the music is bad...not at all...its really good in fact. many different genres all played very well...and its a kids show so its perfectly rated for my ears... unoffensive and positive...not that i dont like more adult (not that kind...) entertainment because i do. just the other day i watched "gone in 60 seconds" (the remake) and "the dark knight". i like "gone" because its full of nice cars (the 428 high compression engine at the end made me rewind a few times) and i like nick cage. some people dont like him but i do...matchstick men was the first movie i saw with him and he was excellent. dark knight was just that...dark. while the the movie was entertaining i came away kinda...meh...i never find anything special in movies that get hyped up beyond what it is.

see, here i am at paragraph 3 and i have lost my way completely...i had wanted to talk about something a bit more serious but how can i after letting you read all thats above...and im not starting over...i have invested WAY too many key strokes to turn back now. so maybe i have just wasted 2 minutes of your time but you could look at it this way...i just schooled you in the inner work flow of my brain and as you can see its kinda....(i looked to jen for guidance on what word i could use to best describe my my brain...so i asked her the first word that pops in her head when i say "steves brain" she smirked and said "penis"...i dont know what to think of that and i dont think it really fits the end but i will try)..i just schooled you in the inner work flow of my brain and as you can see its kinda penis. well there you have it...dont say i didnt try.... :P


§TëVë™

the real deal behind the kripple

i boast i am a superman and that its hard as hell to be me, but its not. its hard as hell to be jen...the unseen person behind my life. the one who watches me slowly erode in too less and less each day. the one who wakes up everyday to do everything for two people before doing everything for 4 children...the one who goes to work to come home exhausted THEN cooks and cleans the house. the one whos day off includes laundry, more house cleaning, driving the kids everywhere, driving kripple to wherever it is he goes...carrying the little sideload known as abby everywhere to boot. the one who takes unfounded yelling and trivial bickering as normal because she knows that her husband doesnt know why he is mad/pissed off/angry/sad/discouraged/hopeless/helpless all at the same time. the one who never has a second to herself because the whole household is resting on her shoulders.


i remember my jen when she was full of energy, laughing and smiling. i feel that i am crushing her with my load...she deserves so much more than this. she is the real SUPER...not me.


i love you jen, thank you for your love and dedication to this tired and bittered soul...its more than i deserve.

big air, big ramps and piss in my pants?

its friday...two days ago i went to a park in north whitby with jen and abby. it is a meetup group from the church (ALL woman - not a bad thing...if i were single!!!!)*** i have let this sit for way too long. it is now saturday and i have forgotten almost everything that happened at the park. i feel really crappy  about this because i was actually very excited about writing this particular blog...why?...well let me tell you...somebody in the group we were with said something about my blog...maybe a mention or something of that sort (which is cool in itself because that means someone is actually reading this stuff (< i have to say i was going to use the word shit in that spot but i am being cautious for some reason...jen tells me just to be myself but if people are reading then i owe it to them to be somewhat ...uh...clean?) and that makes this worth doing.)<< i got lost in all the bracketeering and now i have to remember where in the world i was going with all this...****HELLO PASTOR LAURA AND ALL THE MOMMIES FROM WEDNESDAY!!**** this freaking blog is like a real time insanity trip.

when we were at the park i did notice a bunch of skaters and bikers (not hells angels...though could you imagine HA at the park? it would be the best run park in all of durham thats for sure) really, they stole my attention...i was there to take pictures of abs and her friends but was whisked away to 1987 and the age of 16...i was a biker at heart though i skated as well so i rolled on over to the ramps and started to shoot...they were all cool with me taking pictures (especially when i attached a web address to it)and i sat there for a good 40 minutes just having fun and feeling young...>>> is my favorite picture of the day (that wasnt of jen or abs...but you knew that...right?) this kid just got HUGE freaking air almost every time... it was fun to watch and shoot...oh yeah, he was on a mountain bike too!***i would like to thank all the guys there who put up with my wheelchair and order barking...you guys were wicked***

<<< not to be out done by fun, my bladder had to come out and play too. so once i realized i was ready to take a whiz (by that time it was WAY too late, i just didnt know it...yet) i rolled towards jen. as i drew closer i unloaded my gear on one of the moms (brianas mom i think) and got a chill feeling that i needed to go a little more than i thought (i was starting to clue in to my dire situation). i yelled to jen that we NEEDED to get me to the throne NOW! and i headed towards the mens room...it was down hill...a BIG down hill, which was fine because i like danger and speed so a downhill crazy train was cool with me. now, jen is 5'4" so her strides are somewhat lacking in length so she takes longer to get places... like behind a 6'5" maniac in a wheelchair racing down a hill at a high rate of speed screaming "WOOHOO I GOTTA PEE!!" so when i arrived at the bottom of the hill, jen was nowhere to be found...with 2 huge ramps in front of me, i was forced to sit and wait for mrs.littlelegs (now i was totally aware of my error in judgement, not leaving for the throne earlier) with a bladder on the verge of meltdown. once we got up the ramps and in to the building...the bloody bogg was at the other end of what seemed like a 1/4 mile (400m for all you metric buffs out there) building....jen walked at what seemed like a kripples pace (;P) so i was panicking when she pushed me in to the EMPTY bathroom. if you have been following at all you will know i get leg lock from time to time...it was that time...so i am in the can with my pants undone in the chair but my legs have gone stiff as a board and wont bend...so picture steve, straight as a plank resting over the top of a wheelchair with his pants undone crotch to the wind...screaming "JEN!!!" at the top of his lungs (i am also worried about a potential pee fountain indecent)...finally after the 6 time screaming for her my baby came to the  rescue...sort of...she couldnt bend my knees!! jen had to pull me up with straight legs, kinda like Frankenstein. as we are struggling to get me up, a kid and his grandpa walk in to the bathroom to a big uh...well you can figure that out yourself...they left very quickly....i pee'd on myself, then in the urinal...


§TëVë™

parents are crazy...any wonder our kids are too?

have you ever taken on an event/project and then gotten killed by it in the opening minutes? that is what happened yesterday to jen and i...when we decided (ok..really... jen wanted to, i was sitting in the garage happy as a bug in a bag when i got the text about it) to go bowling with a 12 and 2 year old at "leisure lanes" in whitby.

i was chilling in the garage taking care of my body (i chanced into some kush...it kills all nasty feelings in my body...i thank God that He put this plant on the planet) when i the following text convo started...

"wanna  go bowling?"
"im feeling tired"
"too bad"
"why?"
"i wanted to go" <<< it was at this point the dad/crazy in me woke up and i responded...
"ok get my camera ready"

so i finished what i was doing...i felt good enough to think i was capable of going out (which i clearly wasnt...but the crazy in my life convinced me otherwise) and we climbed in to the van and headed out for the 15 minute drive through oshawa. it was very bright out (gotta love the vitimin D) and i played a bit with the camera...the windshield was dirty so they are a tad shitty but aside from that and the ginormous sun spot...i like them.


we arrived at "leisure lanes" (we have never been btw) and found a spot to park near the door...the front door presented the first problem...aside from all the smokers right in front of the door that we had to hack our way past (sometimes i think smokers do it on purpose... polluting whatever door they are standing near i mean) there were no ramps to be seen for my wheelchair...now i had to decide how much i love the people i was with. i guess i love them tonnes cause i left the chair in the van and grabbed my cane and headed for the front door (so you know, i am about 5 years past being able to walk effectively with a cane). the steps were...well...steps...big enough for me to have issues with but small enough that the pride in me will at least TRY to conquer them...and the pride won with major difficulty...but that was only hurdle #1 (i couldnt believe there were no handiman spots or ramps).

hurdle #2 :

we go in side to find that jen picked a league night to go bowling on, so there were only 4 available lanes to bowl on. that was cool because we got the last lane and here i thought our luck was about to change...UNTIL...he said it was lane 46. we were at lane 5 so i had to walk to the other end of the ally 41 lanes away. now for anyone else this is fine but for me i need assistance...my assistant was dealing with a hyper little girl and a 12year old nob. so it was slow going to say the least.

hurdle #3,4&5:

after arriving at lane 46 the fun really began, there were a set of 3 steps i had to go down to get to the actual lanes...my 12 year old decided he no longer wanted to play because everyone looked like leftovers from the 70's and there were no kids (jen paid for 2 games for 4 people) so while we fought with him to get his shoes on, abby decided she was going to play without us... she proceeded to gutter 4 balls, 3 on one side and one on the other. so when jake finally put the shoes on we had to get an attendant to clear our gutters...but at that point the stress has engulfed both jen and myself and we decided it wise that we cut our losses and pack it in after not even one complete frame.

the funniest:

when we decided to leave there was another door way at the end we were at...it was handiman accessible (thats a kind gesture for me to say because the ramp was as steep as everest...lots of brain power went in to its creation i could tell )...screw you life, your a dick! so nobody was killed or hurt in this outing but there were 2 tired and frustrated parents.

§TëVë™

kripple witnesses major accident

yesterday...one sec, i gotta go pee (go figure). steven is watching malcom in the middle and it keeps fighting for my attention.

ahem...

(the drive)i had an appointment with my MS doctor....hohol...dr hohol...ms expert and punctuality specialist (if she ever viewed (i used viewed because read didnt look right) my blog i think she would smile at my title for her). i enjoy my visits with her, i believe she genuinely cares about my heath...thats a good quality to have when dealing with a guy like me. we started of our appointment off with a laugh...i was an hour late for our very first appointment and maybe even the second (its always the traffic... oshawa to almost the lakeshore in toronto is brutal) so she set me on the straight and said "if you're late again, you can find another doctor." that angered me a lot but do you think i was ever late again? not for8 years....not until my last appointment but it really wasnt my fault...so we made sure we were very early this time. when she came out for the appointment before me, i made sure she was aware of my punctuality to which she said this..."steve, in the Ukraine there is a saying and it translates something like this...what died in the woods...and she smiled and i tried to defend myself and she just walked away...i am very fond of my doctor. after talking about how our kids think they invented the internet and how her kids wont let her have a facebook account and my pee fountain blog (she laughed too), we got to the exam and i am pretty much the same as i was 6 months ago...we will see her again in september.

jen and i got in the elevator with 3 other people...2 older ladies (one of which offered to sit on my lap but i cant remember what i said to get her to say that) and a lady maybe my age. after jokin about sitting in my lap the door opened (my back facing the door) and not being able to see i thought it prudent that i make a beeping noise as i reversed out and good thing...there was a crowed of people waiting for the elevator. as i came to a stop in the middle of the crowd i looked up and nobody was smiling..."tough crowd...i thought it was funny!"...the people started getting on the elevator and one woman whispered to me as she passed "i thought it was funny"...thank God!!! i was starting to think i was a freak....ok i know i am a freak...

by this time it was getting on to 11:00am and jen and i were getting hungry...i thought maybe a slice of za and jen was like "ok...i guess" which means i will go along with your ass because i dont want to think about it. i was happy she said yes...i wanted to go to "the big slice" at yonge and gerrard and so we headed north from queen...i havent been to the big slice since 89/90...the last time i was there i was in a stolen car and met a skin head girl who tried to bum a ride off us to which she was refused (wasnt my stolen car)...a week later she was on the news...they found her burned body in a warehouse(rip..we are sorry for not giving you a ride)...all of us were more than a little weirded out to say the least...BUT...they have great pizza slices. when jen asked what kind of slice we should get...i said cheese slices and she said "cheese?"...."uh huh, cheese"..."ohhhkay"...and in she went to get lunch. we then proceeded to dundas square to eat...i didnt get shit on by a seagull either. we spent some time at the intersection of dundas and yonge (dundas square) ..i have never seen a scramble intersection...i know what it is...but this was my first experience with one. it was very very fun. we would just wander around the intersection taking pictures...one time i just sat in the middle the whole time taking pics for a panorama shot, rushing to the side walk just as the light turned green (craig would have let me sit there as long as i needed directing traffic around me).

we also stopped by the "hard rock" because i wanted to see some guitars...i only saw 2, bobby dylans washburn (pictured) and robbie robertson's black american strat...both very nice guitars. i would love to have owned either one and they made me smile...but i soon ran outta things to look at AND i was starting to run out of steam so we decided we should start back to the van...jen needed an atm so she left me on the east side of yonge and went in to the eaton centre in search of cash. while out side i filmed my video ending witnessed a horrible collision on the sidewalk..a blind guy walking in the middle of the sidewalk crashed in to a guy with one leg in a wheelchair going the opposite way!! the guy in the chair just looked at me with a wtf? look on his face and the blind guy had no clue what the heck just happened...i think i pee'd a little.**taken from my photomentary** after that entertaining uh...side show...i got a text to meet her at queen and yonge...and off i rolled to meet my lover...

§TëVë™

prep work for trouble

today i am going to see my MS doctor downtown...i am not a fan of downtown. people are rude and pushy and everything is crowded and expensive. i am taking all my gear for pictures and even a video maybe....if all goes well i will get in to some trouble while im there! look out st. mikes §TëVë™ is in the house!!