Emotional Rollercoasters

Emotional is not a word that was used to describe the old , pre-stroke version of Phil.   I was a big , gruff , pissed off looking man with 30  years of the trucking industry in his blood . Mind you I did have those moments when my children were born , loved ones passed or old yeller died that I felt the welling of tears but those moments were rare.

 Sce entering the borders of strokeland though I am like a fountain , my emotional state is sent tumbling wildly by something as simple as an unexpected episode of SpongeBob Squarepants ; any of the many frustrations I feel (and cause)can set off the waterworks .

 The battle being waged within me to avoid "feeling sorry for myself" becomes just another reason to "feel sorry for myself". I am still here , in the captain's chair , on the bridge , in the  "head" office , sending out messages and directives to the department heads in emotional control and to the sound engineers in voice control to keep things level and calm.

 The voice deep and authoritative, stop the tears , turn up the gruffness please , but the signals are getting lost , going to the wrong departments , the supervisor in right foot heel control is checking messages and asking "turn off what friggin tears?",   Like my affected limbs , I feel my emotions , know they're there , I know they function but I have no control over them.

The hierarchy has broken down.  It amazes me that the same ol captain is yelling about losing control over everything when he is the ingenious navigator who steered our course into this blasted and devastated place , I can only hope he gets his shit together soon and beams me outta here, this amusement park ride my  brain has put my emotions on is maddening , and it's not only me up here in the lead car , my angelic wife is right there beside me and neither of us care for this kind of roller coaster.

 My inner voice is saying " Be strong for her !" and "You should be a strong supportive shoulder for her right now " "DO IT !!!!and instead , here I am , a weepy bloody mess and I can't make it stop . I am a lucky man , she is the stronger of us and she has been through similar disconnects with her own brain , she understands , and loves me and is strong and a supportive shoulder ,, she is what she has always been , JUST WHAT I NEED ...I  LOVE HER COMPLETELY(oops gonna cry)and so my dear survivors , I'll be back(unless OldYeller comes on tv) see ya at the kleenex box   Phil

STROKELAND53: A Journey

STROKELAND53: A Journey: https://www.facebook.com/pages/Partners-and-Stroke-Survivors/982033235141745 You can also find me at   http://strokeland53.blogspot.ca/ ...

A Journey

https://www.facebook.com/pages/Partners-and-Stroke-Survivors/982033235141745

You can also find me at  http://strokeland53.blogspot.ca/

The first link  is to the facebook page where I began my forays into the fast paced world of one finger typing . since I first entered Strokeland my darling wife has asked me repeatedly to chronicle my struggles and adventures in the blasted landscape of my injured brain and to do my part to help my fellow travellers , the scattered survivors labouring to navigate the strange landscapes where they have been deposited . I have been there , starving for information , WHO? WHAT? WHY ? WHERE?and for direction , a signpost somewhere to point the way and my wife was as usual , right . My hope is that this expanded forum will aid me in my quest to aid the others , to provide some info , to point the way or A way to say I've been there and I got to here and I want to help you do the same , do better.if you squint and peer way off into the distance you'll see me , I'm still wandering out here trying to map this upsidedown world so shout and wave your arms , let me know you are out there and we can make the journey together

Pain Management

For 5 long months , in hospital I was able to shower (with assistance only once a week, having an accessible shower in my home was a dream and were it not for my darling wife's efforts it would still be a dream , but she got it done , and beautifully too.  

 For years I showered myself at the beginning and end of each day and I've missed that.  But my dream has a dark lining , the shower chair I have is difficult for me.  Prolonged sitting in any chair but my wheelchair sends my left thigh into unstoppable and terrible painful spasms .  It's like a full body spasm, all muscles tightened to their limit and at the end of it I am physically exhausted. 

 One of the most relaxing moments for me has become one of the most painful , I have a shower planned this morning and I am terrified; scared shitless of the pain ; it will take over my whole day .

 It's hard sometimes to fight the "stay positive" battle , when the pleasurable moments are taken from you , but now the old stubborn me kicks in , "I have to take showers or all the work to get the bathroom renovated was a waste " not gonna happen. my goals these days are more in the low impact , I hate causing extra work or stress for those around me Well there we go , shower is all done , lived through it but damn I am hurting , a lot and the only form of treatment , that will make my pain stop is essentially unavailable to me right now , through trials on our own , the beautiful Dar and I have found a soloution. 

I am here before you , a living breathing piece of proof of the fact that politicians want kept from you MARIJUANA WORKS my friends after the first attempt I went from mid-spasm to pain free immediately , the offending muscles relaxed right away and the relief was wonderful.   I am becoming so fatigued by pain , it rules my life and the pills , the painkillers and muscle relaxers dont work.   No effect but messing up my internal organs , massage is pointless , havent tried acupuncture yet but you'd probably have to get me high to try that .

smile emoticon , I have spoken with my children and told them my reasons for this new direction , to my doctor , my mom , I want to still make my impact minimal ( very important to me )and not cause embarrassment or awkwardness , I just want to say bye -bye to the pain and the exhaustion that travels with it. the answer I received from my doc and my loved ones was a unanimous "if it stops your pain , go for it !"and I am . so I will try not to preach or try to refrain from ramming this down the throats of the survivors out there , I know me and I can be pretty annoying (I saw that da:) the fact that to end my pain , I have to put my friends and family in danger of prossecution is criminal , as is denying a truth to those out there who suffer through unbelieveable pain , it is wrong. I think I always knew it was wrong but I didnt raise my voice until it affected me personally bothers me , the fact that I was not only blindfolded but that I allowed it to happen is offensive to me , now I'll never shut the hell up later Phil

Independance Day!!!

June 26/15

It's been on my mind (or what's left of it ) lately ; "where did I picture myself being a year after the stroke ?"

 We are coming up to that anniversary ( I hate giving it a festive or celebratory title ) . Yesterday I got up , got into my chair , rolled into the washroom and shaved and brushed my teeth and hair ( different brushes ; and had a morning appointment with occupational therapy. 

Then I wrote a bit and took off; a short road trip to my mother's house to say hi ! Not a far trip , but a solo one , which is rare these days as I always have my beautiful Dar with me. A year ago these things were not part of my daily routine . I am the kind of person who overthinks doing new things , envisions the activity , the challenges and obstructions , prepares for what may go wrong , developes alternate routes and scenarios .

 Surprise is not my friend . I had , in my dreams , made the jaunt over to mom's several times , obsessing over where the sidewalks were , where I'd have to go on or off the road to the point that if any of those things were not as I'd dreamed them I would feel a spike of panic , but all was as dreamt and it was pretty close by so it went quick. 

Had a nice visit and gave my buddy Phil , who's been pissing me off lately a gift of being able to say "Well , not bad for a year in ! For quite a while I felt the easiest path to the Phil I once was started at stubbornness and obstinance , detoured through attitude and arrogance , and did a stopover in bullheaded junction , but I am now mapping out the independance trail in my dream time , it still follows the same route and stops for lunch in the junction but hopefully will be less stressful on me and my lovely partner. 

Some of my dumbest mistakes and falls were acheived by taking the independance trail without a plan and I'm done hurting US by bulling into stuff without thinking. I did enough of that before and since stroke time and I am setting out these days as a more seasoned traveller , one with new priorities , new destinations an appreciation for the inability to do so and a very full heart , good luck on the road fellow travellers , see you for lunch at the junction.Phil

June 25/15

I had the opportunity to meet someone today who had been in a terrible accident and come out of the fog with no memory at all eventually regaining some of the long term. 

I was reminded of the most frustrating aspect of brain injury for me , the loss of a part of one's self to the extent that I have and still do suffer through bouts of lonliness.

 Yes thats right , as ridiculous as it sounds I can feel like I miss myself , the ways I felt and acted and reacted for over 50 yearsone reason why despite my ranting to the contrary I will continue to keep an eye out for the ol Phil , he was too stubborn and opinionated to just go away because he was told or expected to.

 I've gone on about this subject several times and obviously have a great deal to add so if any of you out there in the blasted brain landscape have more to throw into the mix please do , or any questions that the doctors have explained and you feel left with the deep seated need for a grumpy old bastard's opinion , send them to me , would be glad to give one of the rarest of resources out there , information . 

oh , I tried to pump them all , docs , therapists , nurses , saying,"I know you can't predict what will happen next but , I assume you have been at your job for quite a while and that you are good at it , so based on your opinion how do you see this playing out ?"  Never worked for me , but an unexpected visit one day from a fellow survivor and member of a stroke awareness group gave me a wonderful gift , info !!! 

 "

hey, your hand looks loose , at least its not clenched like mine was " or , "my leg was the same but look at me now " (not even a cane ! it was phenomenal , actual knowledge , the absense tf the old chestnut "well that's very common in stroke victims , but everyone is different " BS , SO IF i CAN HELP ANY RAYS OF INSIGHT FIND THEIR WAY THROUGH THE MIST i'D BE HAPPY TO DO SO , iI've done my time in the prison of frustration and I prefer the light too . It is gonna get better , maybe only because you will be tougher from the battle but you figured it all out as a baby , with a new brain that was fresh out of the package , still had that new brain smell ) , so you are already well on your way to re-training it. so let me know , the best thing I heard in my hospital time came from someone saying just what I am now , just ask , being helped changed me , maybe it's contagious.

Phil

Memories

June 24/15

As I woke up this morning I found myself standing once again in the hallway of memories that is my damaged brain, confronted yet again with a seemingly endless array of closed doors and the glaring absence of a simple and helpful YOU ARE HERE map. 

  It's authoritative red arrow showing me what's what, and where's where I guess, but this is not a place of maps and signposts, exploration here is done by feel and with an air of shock and surprise. I am standing in front of a specific door , not a new one that's for sure , a bit dusty , a little worn and very comfortable , it opens to a bedroom , a child's room a crib , a superman music boxy thing , made a special room by a decorator with a huge heart and a tiny budget , home ! This place is important, the very first place I ever told my Dar that "I love you”, glancing up quickly to gauge her reaction, is she shocked? Happy? laughing ?? I know I was shocked , not that I loved her but that I'd had the guts to say so , this is the one I will share with for the rest of my days , and so my friends , here we are at the start of today's explorations.

 I've yammered on about feeling like I lost a bit of the old me when strokezilla destroyed Tokyo and about the frustrations involved in trying to get the old you back , the loneliness ,emptiness , about letting go of all that and starting over with a new you , the physical barriers and limitations are tough to overcome , real tough , but the battle inside your head is the toughest and it carries with it the most collateral damage , both to you and your loved ones , I have lived and existed in a very solitary manner at several intervals of my former life , but I was never truly alone.

 Dar was always there sharing and living it all along side me through everything , she knew the old me too , was married to him for decades putting up with all his shit , do I need to find old Phil for her ? She lost someone too we both had a lot invested in that union, and we've both had brain injuries! Are we both the same kids who wanted to be together always? 

Are we essentially cheating on our old selves now? I have a hard time putting my finger on exactly what is missing in my brain pan , but I know what remains , the guy that is sitting here now has that same wild desire to blurt out "I love you" right now , there , he just did. and for the permanent record, she wasn’t shocked this time either.

 The battle we are all waging right now fellow survivors is not our own, the people who care about you have a stake in the outcome it's important to feel occasionally like the you of old, but it’s not only important for you, so before you shoot your mouth off, lash out or give your frustration an escape remember the other soldiers in the foxhole, just as tired and battle scarred, sometimes more so! Be strong! Becomes Be strong enough! For you, for her, him for them, for us. Now we all have things that can make us doubt, or back peddle a bit, but for me a fight isn’t one of them, I like a good scrap, that didn’t change. See you when the bell rings Phil

Twice in the Attic

June 23/15

This morning’s journey into the long dark hallway of my mind begs the question , "which door will I try today , let's open one up and see what's waiting inside ; hmmm this is a room full of acceptance.  I knew this place existed , know I have been there before but I can't remember when .

 I recall with vivid detail being told I'd had a stroke I knew when I headed to hospital , when I woke with the numbness , I was told about the paralysis , about what was still working and what was not , but I am lost when I try to re-visit where and when I came to accept it . I recall the detailed dreams in hospital of my old fiercely independent brain , "I'm not staying here , my bank card and bus pass must still be in my jeans pocket , I'll walk off this wing , I know where there's a bank machine and a phone , I am outta here , I remember a series of dreams that had the room I was in being in my home and trying to get out of bed to head down to my bathroom to pee .

 I also remember the moment that my disability reared its head in my dreams , reality kicked in the door of my escape place and set up a command center , that moment was truly as devastating as the moment that I was told of my limitations , I was at one of my kids weddings and had to walk to the front of the room when a voice interrupted fantasy land and informed me that I needed a wheelchair or at least a cane or I would fall and be humiliated , as would my family , new and old . perhaps , and I can hear one of you out there saying it now , I still have not accepted things the way they are , I like that , too stubborn and tough to let Mr. stroke win one . 

This condition has been bringing forward several bouts of rebellion, while in hospital I refused to shave my face for 5 months, I have no clue where the first sprouts of rebel attitude grew from, lately it is my hair that I don’t want cut, no idea why, if I remember properly long hair was a pain in the ass, but I guess it makes me feel I have retained a tiny spot in the control room again. 

My hand is that much closer to the wheel and when the ship kicks into high gear and takes a crazy "what is this guy? nuts !" turn you can rest assured that Elvis is back in the building and captain stubing , gopher , and the shuffleboard equipment are floating in our wake somewhere . since I have no idea of where I may have encountered the point of acceptance I choose to take the path of badass , and say I know one tells me what I can and can't do , I feel that this stance is cool but not particularly healthy and I hear the angelic Dar in the background saying that I have to accept to move ahead , I guess that is so , she's never wrong , so I'll work on it but I will accept rebelliously and so when someday we meet fellow survivor I will probably have both a cane and a pony tail , somewhere between badass and dumbass.  Phil

Fear & Survival of The Fittest

June 22/2015

I never plan these little jaunts into my devastated brain landscape ahead of time ; I just go with what's there when I awake each day .  Today’s subject is fear . I've said recently that one of the keys of survival is to be available and ready to rock when confronted with challenges like physio therapy, it is so important to rise to the challenge, take some control over your recovery, having said that I will chat about the trepidation that travels along side of challenge. 

I have a bi-weekly physio appointment today, I will most likely do things I have done before, sit to stands, some walking with my quad cane in the hospital hallway and I have awakened afraid. 

What if I can't do it? If I fall? All of the amazing amount of multi-tasking involved in the act of walking is weighing heavily on me today. Now these are things I can do. Can do well. I meet the expectations that I should , have several times , it doesn't help things knowing that it is the act that seems to prompt therapists to throw new wrinkles my way , "lets walk on the grass !" , "go outside" , "without the cane!!" and I know that I have my own expectations to overcome , my own doubts. 

I'm not as worried about not meeting the expectations of others as I am having to realize I have reached the full extent of my rehabilitation . I am terrified of that moment . so I'm gonna go to physio , gonna grab onto my recovery and make it my bitch !I'll be a rock star in that hallway for my sanity , for all of the therapists hard work , for my beautiful Dar who has been present for every step I've taken , for my family and because I have gone and on and on about the importance of being a part of your recovery , for you my dear survivors , for everyone who is even more scared than I am .

 So get up off your ass Phil , get involved ! Be strong, for them for her and especially for you. I don’t want to fail but I'd rather pick myself back up (done that a few times already) than, wonder if I could have. The voices in my head are all shouting at once, with distinctly different character voices like a Pixar movie, "You can't back down after telling folks they have to try!" "c'mon be a man!!!”, "you have to be strong for Dar she was always strong for you!!!!!”, "the parabus is already arranged!""They’re expecting you, it would be rude!" (damned Canadian voice”. 

since I moved to Stroke town, my life has always been like this, with fear and indecision trying to steer the ship and the old captain who was not afraid and made decisions seems to have fallen overboard, well he may be off somewhere but stubborn pride still has a room here and that voice is yelling "shut the hell up everyone, we're going and we're going to nail it!”Tomorrow’s post is either going to be triumphant as hell or pretty sheepish, either way I have to try. I'm going to walk again! , it probably won’t be pretty, I won’t be doing a jeans commercial, but the first and most important step is to get outa bed and try and I still have a whole room full of try in here, so be tough, do it for you, stop looking for the old you and give the new guy a kick in the ass, do it to shut up the Pixar voices, someday we can both say "I did it!" as we walk together.... GET UP....! Phil

Nostalgia & Father's Day

June 21/15

Well, my long winded typing finger didn't get enough nostalgia yesterday so here we go again. Father’s day.  

I attempted to discuss some of my dad's eccentricities yesterday but here's a few more.  Sunday mornings like this beautiful peaceful Sunday morning were;  when I was a kid , were kicked into "let's get chores done mode with the help of John Phillip Sousa marching music booming from the speakers of dad's ol 8 track player , letting us know it was time to get up , enjoy an oddly named breakfast and get the day started.

 Then there were the family activities , family court proceedings , if one of my sisters had "married" some teen heartthrob , we held a family wedding , and on the occasion of a holiday , Canada Day comes to mind.  

 we were instructed to get an instrument it was parade time , the neighborhood was subjected to McCoy and his kids making a racket in the street (loud but as un-sousa like as can be )Dad got embroiled in a "mooning" war , with a neighbor that led to one of my most scarring moments as a child , I answered a knock at the door , which I opened , revealing an ass well over the 300lb mark , unclothed and pressed against the glass of the screen door!

  we had a dog for a time , named 'whisky" , when he got out Dad had to wander the street at night looking for him , calling "Whisky !!" to calls from neighbors of "go home and sleep it off McCoy !!!!!" .

 Dad's adventures on Halloween involved going door to door dressed as an old lady with an empty glass asking for drinks and getting recognized instantly. I am so thankful that my boys got to chance to experience my dad , I certainly have eccentricities of my own but I feel pretty boring when I think back to those old days . 

It is one of the reasons I am so interested in the new roles of my kids as husbands and partners, living vicariously through the moments that will become their treasured memories as they enter these new roles they each have undergone changes that bring me back to my own transition into the role of a husband, the way that they interact with their partners, laugh, discuss, share and the way they are so, "there" for each other. a wonderful time and one that both Dar and I watch somewhat jealously, yearning for the nostalgic feelings it awakens I was fortunate as a dad, the boys and I share interests like making music and a love of the dumber side of comedies, they were all fun and interesting as kids and are impressive and interesting in their new roles, when on occasion I am around young children I long for the wonderfully exuberant boys that once filled our home. so my most pressing feelings this father's day are those of pride in my sons and for the men they have become, of gratitude for the colours, sounds and the love I felt as a kid from my own dad and of the rest of the journey as the products of my own fathering style branch out into styles of their own Happy F-DAY (not the same F I usually use when I abbreviate!) Phil

Memories & New Beginnings

June 20/15

Aaaahhh! memories, lately I am confronted by feelings of warm and fuzzy nostalgia as I watch my sons beginning their lives as husbands , watching them go through experiences that will be the foundation of their marriages , their lives .

 Years ago my parents told me how important those early days were in setting the tone of things to come , that first tiny apartment , rickety old sofa or in our case , a tired ol bed , that bed was a sad thing , sagging so much in the middle that we slept for years pressed together at the bottom of the dip , the first queen sized bed we bought seemed huge afterward , we felt so far away from each other , a treasured memory that old bed , the kids are having days like those , setting up homes , learning to live together , getting pets , building the foundation , makes me miss old times and relive my own youth.

 My boys learned a valuable lesson growing up , they followed the example so perfectly set for them , their mom , and they each married or will be marrying , strong, beautiful women , they will all be as well taken care of as ol dad The first time I ever brought my beautiful Dar home to introduce her to my parents .

 I remember my dad fixing me a few times with a steady , "how do you expect to carry on a proper relationship with this girl with your unemployed ass ?" at one point mid-meal he asked the woman I was trying to impress if she wanted a bun (there was a basket of crusty rolls on the table in front of him , Dar said "yes please" and dad picked up a bun and tossed it across the table at her . my angel deftly caught the hurtling roll snatching it out of the air and with a flash of a bit of stink eye and a slightly confused expression on her pretty face , my delicate little flower hauled off and threw the bun back , we all burst out laughing but the looks on Dar and Dad's faces was priceless , she wondering what kind of weird family I had and him looking both confused and delighted , it was the moment that I first realized that they liked her more than they did me , dad's glances from that point on were different , turning more towards "I get why you like her , I do too" .  It meant the world to me . that was the moment that Dar became a McCoy and it's another of those wonderful formative memories. For me those early apartments and dilapidated furniture carry with them the sound and the essence of the kids as they grew feelings of wonder and amazement of the years learning to be a parent, a husband, a man.

June 18

AAAARGH!!!! What a maddening day !! Had a doctor's appt. so we didn’t bother arranging a ride , it's nearby so we "walked" or Dar did and I rolled.  Sidewalks around here are pretty damned rough on my ass , it used to be a lot more padded , not anymore.

 We got to the doc's ok with a stop or two on the way , got to the office on time , but reception was closed for lunch.  We had a long but fairly comfy wait, our conversation with the doc was productive and he supported my request for a medicinal marijuana signature with a " if it helps and relieves the pain , go for it "sort of attitude.  Now it is up to us to find out how to acquire my medicine. 

Working on that we then headed to Shoppers drug mart to p/u a few things and couldn’t leave , a jackass pulled up to the entrance to the store at the ONLY place that the walkway is ramped to roll down to ground level and he dropped his wife off and locked himself out of his SUV leaving it blocking my only way to leave in a chair and his motor running.

  Dar told him off and after she grabbed the manager and demanded we be allowed to leave , a few stock guys came out and lifted me and my 300 lb chair down to parking lot level;  Dar wouldn’t let me jump it . and after a stupid 3/4 of an hour there , off we went to the grocery store.    Having stocked up we rolled over to a Harvey's to grab lunch ; we hadn’t eaten or coffee'd up till then because I was fasting for a blood test and she was fasting with me cuz she's the best , the lab was closed when we got there anyway , perfect day so far. 

 We got to Harvey's but another jackass had parked on the ramp going up to store level AAAAARGH!!!! , at least Harvey's had more than one ramp and then the trek back home with thunder booming in the very dark sky , we kept breaking out in giggles saying "what happened to you on the day you went looking for a pot prescription ?   This is light years away from where my poor Dar ever pictured herself; the fact that she was with me at all speaks volumes about what a loving and dedicated person she is.

 I am headed into new territory here my fellow survivors and I am not equipped to handle the unknown to the same degree I once was, but I'm relying on the buddy system and am taking someone who has always known what is best for me (even when I was too dumb to listen) into the mist with me. So if you should find yourself in close proximity to me in the thick of the fog, say hi! Talk directly to me and if you are expecting any shocks or surprises you may want to stay away from my chocolate chip cookies. Keep on surviving, Phil

The Secret

June 17

Guilt, not my first time experiencing it certainly, but this time out it is different, another thing that I still does, and I just do it differently.

 As I have mentioned previously, I have embarked on a new method of treatment for my pain, a marijuana based treatment that has proven very successful, the pain ended completely for a time, so abruptly that I felt the overwhelming realization that I had stumbled on a secret, a truth that I was not supposed to know, how could I have been in the care of so many health professionals and had the solution to my pain, keep from me.

WHY? And now on to the guilt. Since being visited by Mr. stroke, I have struggled daily with the feeling that I have become a burden to my loved ones, confronted constantly with things I can no longer do for myself, my darling wife does so, so much to keep me from these feelings but the brain will do what it does, this brings me to the guilt, a place I have come to know well and one I am apparently getting ready to build a home in.

 My struggle now revolves around the friends and family that I put at risk of prosecution for the crime of helping me get relief from the pain, and also for my sons, their wives and fiancée’s and the many members of the girl's families who are present on this medium I have been using to air out my brain and its difficulties.

 I am worried about causing undue embarrassment and/or discomfort in their new and blossoming lives; they fill me with so much pride that I feel bad repaying with my issues. Each of my boys reacted to my voicing of my guilt lately by saying the same thing, STOP THE PAIN ANY WAY YOU CAN!

 Some fine upbringing there I must say. and I cannot say now without breaking down in tears how much I appreciate them. Thank you boys. 

This pain is not only mine to fight , my angel Dar goes through it too , frustrated that she couldn’t help me when it took over my life , she was the one who suggested this new treatment (her sons can’t believe that !)

Once again I find my cranky ol ass in the place it is least comfortable, with all of this guilt, drama and fear revolving around me. despite what some of you believe I hate being the center of attention , being a reason to work harder , or a source of difficulty , if it helps to lighten the mood.

 Here's a thing I told the kids it will be funniest to those of you who know us well . I have watched my motivated , caring , lovingly responsible pillar of the community wife become very accomplished at the rolling of Daddy's medicine , and with helping him take it , so accomplished in fact that I have begun referring to her as "Cheech"It is insane that we live in a world , in a time that relief like this is still being denied to people in horrible pain , children wracked with terrible seizures, loved ones that we would do anything to give relief , we can , if a guy as cynical as I can be convinced to this degree , please know that there is a truth out there being kept from you . By exploring this path on my own I have a way to help look after those who care for me, once again I can help. Help retain their peace of mind, to be the protector again  Phil

Old Dogs New Tricks

June 15/15

I am not an old dog I guess, I can be taught new tricks. while I acknowledge that the stroke I suffered was brought on entirely by me , my bad habits , stress levels and bad decisions , I did not enter Strokeland alone , since I woke her up saying I had a problem and needed to go to hospital. 

Dar has been with me every moment , and from the time I awoke in another city , another hospital , she has been telling me that I had to write , to share , to occupy the brain I had left and as usual she was absolutely correct . 

I have on a few of these morning outings , learned about myself , found insights into my new world , experienced revelations in the way one does trying to follow the stream of his consciousness on a keyboard with one finger . Yes, I can not only learn but can admit it, am I still male.  

 While hunting and pecking through yesterday's post I found the place on the path I now walk (roll) where I can stop, turn around and decide to leave the Phil I was somewhat in the past and embrace the new me. Who would refuse a chance to do it over? to re-make what they were , for me it was usually a desire to finally buckle down and find a way to lose a pile of weight , (found a way that worked , can’t recommend it !) and to live healthier , to lose the bad habits , to be smarter about the way I was living and appreciate what I have . Well here's my chance, I am presented with a template and the kit to make it happen.

 Hmmm the new model is much lighter, eats better, habits no longer an issue, lots of pluses, still breathing for one, good! , still has Dar, excellent! Great kids! damned handsome !(sorry , had to ) it took half a century to screw up the last one , seems to be happy , grateful and appreciative , loves her completely... sarcastic though , bit of an ass , but he seems happiest about that ! And here we go, Project Phil 2.0 is a go let's get this one right!

 As I sit here preparing to get into this pile of Lego blocks and attitude and start building a new Phil, I reflect a bit sadly on the retirement of the last one, we weren't geniuses but we had some fun together and I always could count on him for a wicked smile or a fellow conspirator. 

Should you encounter the new me somewhere out there my dear fellow survivor here's a helpful hint or 2. look directly at him when you speak to him , he hates when people talk over his head , use a normal tone of voice , his ears and remaining brain still function , you'll know it’s me , long messy hair , skulls on everything , eye patch cocked at a very Deppish angle and by the beautiful Dar holding his hand and with a tired look in her eyes , a look that says "I just had to tell my husband of 30 years to be nice and remember you're a grown up ( to his face , not over his head )I am hardly giving up on finding my old self , I am willing to take on the job of building a new one , done it before and while he wasn't perfect he did manage to get the most amazing woman he'd ever met to marry him and give him some gorgeous children . So if you encounter me, get me a coffee and let me know if I'm on the right track to Philness.... today I learned that I am way to long winded for a one fingered typist, Later Phil

Theme Park

June 14/15

Strength , for me it was always a strong back that I counted on , used it as a part of my identity , it helped friends move , helped endure ridiculous work pressures and it paid the bills for a long time while the brain took a nap , I lost several bits of my identity when I entered this stroke survivor theme park .

 The way I used to look , my voice my tools for coping , a big guy with a guitar always in his hand was me , the guitar a part of my look as well as the sound of my voice . Oh there's still strength in here somewhere, but the drawer that I used to keep it in is empty, the landscape of the place my brain exists, is different, it’s alien and weird. There’s an actor in a lizard suit holding a nasty looking prop boulder made of styrofoam over his head behind those rocks over there and none of my stuff is where I left it! The docs believe that during the stroke apocalypse there was scarring, a lot of bombed out rubble that includes the place in my grey matter where I kept the part that informs me when to be hungry and or thirsty. Now this is a drawer I kept open for a long time, stood in front of it for hours whining that "I'm hungry"! and there's nothing to eat (trust me I always found something I just want to look like Phil again (////I’m not asking for Brad Pitt here) and to sound the way I want to sound . a big throaty loud Les Paul sound and to feel like me , I can’t bring myself to ask to be just like I was before , I was a poster boy for stroke awareness , a hair trigger waiting for the big bang and as much as I would love to have all the answers my dear fellow survivors. 

 It occurs to me as I sit here typing with my one finger that it is not for me to point your way on this rocky path , but to hold out my hand and step onto the trail at your side , let’s explore this alien place together , make a list of where we find all our stuff , let’s face it , we were comfy with it being where we left it but it didn’t do us all that much good back then, I will try to keep up and carry my share but I'm having strength issues , if it concerns you just look for Dar , if she's with me I'm strong enough we'll be ok . watch out for the "gorn" behind that rock over there, I'll try to warn you about the obstacles and confusion and along the way , like I am now we may learn a thing or 2 about letting go of what was and embracing your new Brad Pitt , getting used to how he thinks and sounds , if the building blocks were solid the new guy will probably do alright and if your new guy is in a place with a purple sky rocking a lizard mask and a fake boulder we're gonna be meeting real soon , ... beam me up Scotty...McCoy out

Good Morning Strokeland!!!

June 13/15

My brain, the traitorous thing was once a master of sending signals, mostly regarding getting me out of trouble (trouble that the damned thing had gotten me into) but the radio station at brain central is dark and quiet now, lights are off, the transmitter torn down, the turntable is still playing a good old Zeppelin tune, but the wires are cut, the signals being sent to my limbs are getting scrambled badly along the way. and feedback signals coming back from the limbs (etc.are doing the same thing , the airwaves are a mess ! 

Once , during a physio session , standing in a hospital hallway I was trying to walk , I signalled the left leg to take a step it did so , the leg must have a big antenna (I tell people it's big anyway.) , I moved the cane in my right hand into an advanced position , all good so far and the signal came through to head office , leg and cane in position "we are secure" , the signal was amazingly clean everything I had sent out was accomplished as commanded and the airwaves were Chrystal clear , it was so wonderfully alien to me , it was a blow to my damaged brain that systems were still operating somewhere , an emotional moment for me certainly.

 Since then and up until that moment , I had and have been bombarded with a barrage of angry static all the time , 24/7 , angry tingling and miscommunication the only thing playing on that previously clear channel was angry painful static still is . I found the off switch the other night while exploring my new hemp based treatment , the static , like the pain was shut down , the constant loud blast of garbled signal was silent , blissfully silent , it was so relaxing so different . and here I am climbing back up on this horse again , going on about pot but I my friends am convinced , sold , on the bandwagon , hungry for a brownie , on a course that the professionals I sought out didn’t suggest , it was my wife , who has never attended medical school , the girl that solved the mysterious medication allergy I had since the stroke , who prodded me to free myself from the grip of the pain (and the static), so I aint gonna shut up anytime soon , I am sending out this signal to you dear survivor , to let you know that other stations are on the air , as frustrated as you are , just as hungry for a clear reply and I'll keep broadcasting , hope it’s getting to you out there...signing off for now Phil.

High Maintenance Part II

 June 12/15

Well, here goes. this morning I am in a mood to re-visit some past posts , as I have repeatedly stated , the formula of , know yourself and know what works for you , become involved in your recovery , investigate , suggest , negotiate when it comes to getting the desired result , be strong , advocate for YOU. 

I have , as mentioned before been dealing with recurring and excruciating pain for a long time now , My doctor has been taking the path of pills as a treatment , muscle relaxers and pain killers , now although my teenage self cannot believe I am saying it I am not a fan of the pill route . I worry about the damage being done to me internally and with the fact that the pain killers do not do as advertised. they don't work , so I will deal with the pain now and the problems with internal organs later I guess , while I do get a small relief from the muscle relaxers to avoid pain I would have to take them constantly and as I said I hate pills . 

Recently Dar and I watched a 60 minutes episode, detailing the fight of epilepsy stricken children to obtain a seizure halting marijuana oil, and we, like everyone out there are being bombarded by the national news concerning the laws defining the forms of pot that may be ingested. It certainly forms a bunch of interesting questions in the pain suffering mind, it led me to start researching possibilities and it did so to my Dar as well. Now my wife to all who haven't met her is a force of nature, she considers my pain, our pain and when a problem is not being fixed Dar fixes it! 

She called my attention to articles and news expounding the benefits of marijuana as a treatment and she motivated stubborn Phil , something only she can do so well, to do something . A few calls and I was on a new path, getting involved in the recovery, looking for what might work for me, outside getting myself ready to smoke my medicine. This is not the place that, had I been asked a year ago I'd have pictured us. 2 adults , responsible (well she is )law abiding , parents but dear survivors here I sit , PAIN FREE SINCE 6:30 last evening for 14 HOURS , I can’t recall any time in recent history being so blissfully painless . How in god's name is this not mandatory, Dave's not here man! Phil

Good Cop/Bad Cop

June 8 at 10:32am · 

Humour , since the stroke people have told me repeatedly that at least you still have your sense of humour" , I guess I do , I certainly don't have the same degree of confidence in it , I know it can be nasty at times and when I go for a laugh I find myself scanning the faces of those I trust to see if I am being relatively appropriate (which was not the case pre-stroke)I seem to have retained the core of something that , based on the reactions of others , defined me somewhat. It can be so hard to tell for me lately. Having said that should feel safer I guess, from the question that has landed me in trouble for most of my life "wouldn't IT BE FUNNY IF?".

 A question that has shown me over the years that my sense of humour is not particularly shared by many branches of law enforcement, not that I have seen many examples of authoritarian humour, no one ever thought I was important enough to play good cop / bad cop with me. I am not familiar with all of the criteria needed to become a police officer , if there's a grading system , "well officer Johnson , your interrogation skills are top rate but unfortunately you didn't do so well in good cop , I usually got the bad cop finalists , (didn't rate a good cop role play just because I'm a smart ass ) but I wonder if there are the trainees that excelled at either good or bad that sit in the break room like understudies , waiting for their big break "Hey Peterson , detective Jones is off sick today we need a bad cop in interrogation room #5 you're up" , with no time to prepare , no agreement that one will offer coffee and one will yell NO WAY , how good or bad should we be ?they can’t need 2 bad cops can they , "did we pick McCoy up again?" , what's my motivation ?" Now I don't get into that much trouble anymore .

 I can't run as fast certainly but my humour and that damned "wouldn't it be funny if ?" question still lives in here and lately it has discovered the wonders of the internet and the fact that whatever you ask no matter how ridiculous exists out there in the ether . my searches have undoubtedly landed me on several watch lists out there , waiting for me to type in a particular combination of key words , so if I stop typing suddenly it may mean my one finger is sore but please give a thought to how severely I may be getting water boarded right now , last year during a table discussion with my sons about or party favours the question "can you order dildos in bulk online was asked and dad with his "wouldn't it be funny attitude and a company cell phone looked it up , adding to my watch list ready browsing history . Yesterday morning I said coyly to my wife as she walked past my wheelchair "hey baby, you wanna join the 3 feet high club, patting my lap. I then turned toward my computer as she was in mid refusal and typed in Wheelchair pick up lines , I was tempted to type wheel chair terrorist pick up lines to speed up the process but chickened out(he said as he posted it on here . hey wouldn't it be funny if?????Phil

High Maintenance

June 7 at 10:43am · 

believe it or not , I have never adhered to a very detailed beauty regime; in fact , now that my morning rituals involve my angelic wife and a rotating staff of support workers I am as "high maintenance " as I have ever been. for me the standard answers to the question "how do you want your hair cut ?" were "shorter" or "I don't care I don't have to look at it" as I have ranted previously , at some point mid-stroke , some parts of myself , my personality, my mental being if you will , left the building , I do not really feel complete anymore .

 As for the reason I mention my hair. I don't really look like me anymore either. during my 5 month incarceration at the hospital I rarely encountered a mirror , when I did I saw a heavily bearded , wide eyed , prisoner of war looking dude , now as I shave myself in the morning I am staring at a skinny wide eyed prisoner of war looking dude . I am about 60 lbs(it's too early for kgs sorry ) lighter than my pre stroke incarnation , I have adopted a no thank you hair cutting policy and , when you couple my feelings of personality abandonment with my new appearance it is devastating to one's self image and identity . on a few occasions I have found the old tunnel leading to the sarcasm region of my brain and have been as quick with a well sharpened insult as ever , upon meeting an acquaintance at the local library when he said "I'm surprised to see you here" I quickly replied "you're surprised ? I didn't think you could read " , so I guess that are of my brain just suffered a cave in and was not lost as I'd thought and so, I sit here typing with my one finger , with an endless parade of stroke related commercials and news stories filling the back ground from the TV.

 I go over this and realize that as I hunt and peck my way through this I am saying to you dear survivor that the things that you feel you have lost are just buried , they're not where you left them but they aren't gone , a fact that I am realizing as I slowly type , I now have to turn around and tell Dar once again that she was right about my condition and the therapeutic value of writing about it , she is going get a swelled head soon , perhaps she should write about it.... I will be back to humiliate myself further tomorrow Phil

Institutional Availability

June 6 at 9:45am 

· 

The most completely useful piece of information that I learned during my long hospital stay came from my beautiful wife.  It makes perfect sense when you hear it outside of the hospital but it sounds like a royal pain in the ass while you are a patient , and it is simply "go to physio" , make yourself available each and every time those sadistic bastards invade the quiet of your nice restful room. 

Disturb the marathon viewing of the "cops" show on TV , whatever , as much of a long and hurtful intrusion it may seem to be . Get up, accept the challenge, tackle any new activity suggested and if I may add a bit of my own advice, insist that the therapists keep you involved and informed during your recovery. if you know what is expected of you , then help to make it happen I recall being told (or overhearing) that I had to start getting my quads to engage to further the progress in the walking I was starting to do , I went back to my room determined , got on Google and looked up quad exercises . did them through the nights that sleep eluded me and smiled to myself all day when the new range of movement in my leg surprised everyone in the gym.

 I knew that if I applied the same stubborn tenacity that had always gotten me through my work days , to my recovery , that I could get things moving at my pace and not someone else’s , that I could be involved, be just like I used to be; be in some form of control.  Again I am going back to my unique situation and relaying how beneficial it was having Darlene there to coach me , but she would give this same advice to everyone within hearing distance , the scared , some of the older ' fiercely independent residents of the ward I was in after hearing them say no to physio or any activity . "You can still be independent, take control of your situation” great advice for an immobilized control freak let me tell you.

 I have now hit the wall as far as the therapists in the hospital are concerned and I will soon be having to take on the challenge of getting Phil better myself, I will succeed I have Dar and my stubbornness, but I owe it all to that amazing bit of advice and so I pass it on in a much less sweet and loving tone of voice. "Get up, Get motivated, take back control over your recovery and your future just say yes "GET UP...Phil McCoy

Taking Inventory

June 5 at 10:57am · 

If you, like me are an obsessive member of the human race your mind craves answers. tidbits of information upon which to build a foundation of fears and worries , a direction for the suggestions to avoid trouble to take , to start a new file of things that could go wrong , well fellow survivors it's not coming , get used to it.

the phrase I have come to know and expect as I have become very familiar with it is "well , that problem is very common to stroke victims but everyone is different . " now I want answers , facts , I am only really happy when I feel I have prepared myself for each and every disaster that may occur
But the folks who have the training and experience refuse to lock down any scenario that is likely , I don't blame them for this , I wouldn't want to commit to a certain outcome either , and as a patient I tried .

 A common conversation went, "based on the years and years you have been at this job, what can you see happening in the near future?” I was never successful in this line of questioning. I have a great deal of respect for therapists , for the commitment that working through the body's repair process every day must take , it seems unbearably slow to me and I have only had to do it this once personally , and once with my darling wife , and I have worked with some excellent people; one of whom has been through this with both Dar and I .

 So get used to the frustration , there are no guarantees , what has been the case many times over and over can be shattered by your will , by your stubbornness , there are several other bits of peril for you to obsess over coming your way , you won’t be bored , if I have any single piece of advice to give for the scary landscape you now find yourself stumbling through it is "when you have a long journey to undertake in a land that is foreboding and unknown , the most helpful thing that one can have is a guide who has been there before , who knows the way. I have my Dar, my secret weapon, my protector and my hero at my side, fear has no power over me anymore, there are other guides out there, other survivors who walked where you are walking to help yourself I was to have to answer the question" how did you survive?" someday I will say "I travel in great company" from somewhere out there, Phil.