What’s real

What’s real to you? My reality is up and down this blog. Its very title is a reflection of my reality… 

I am beginning to truly believe that what is real in your mind is real to you. This qualification has come only recently (Calgary, circa 2003, I do believe)-the old line was incomplete, I gather. I have been spouting “what is real in your mind is real“for a solid decade. It was likely a thought I had listening to Rage Against The Machine, and, again, it was often used as a conversation starter. 

There are few people who are uncomfortable talking about their everyday. Whether it’s work, whether it’s play, whether it’s some melange of minutia and monotony… Most are comfortable discussing something such as this… 

What I am just now starting to see (and this is a statement I have heard my entire existence–everything is subjective. I didn’t really understand what the heck that meant–when I throw something like that. I like to guage the reaction of the person who whom I am speaking. If there isn’t a some semblance of understanding. I quickly follow it up with a (subjective) explanation of what it is I am trying to convey. 

I very much enjoy discussing various people’s respective realities. It is the only true way to retain such a maddeningly difficult concept such as objectivity. And this has become my everyday. Straight up, it’s hard not to be jaded. I’ve been through some stuff. 

I’ll end there–my cousin just rolled in! Think about what’s real to you. 

Non-Standard

This Blog post began upon true contemplation of a question asked to me by my personal and professional mentor. The question was thus put to me: “Are you where God wants you to be?” This was at 17:45 on 15-November, 2013. It is only now, at 13:21 on the following day, a full 20 hours later, that I am ready to hit “Send”.  My friend, Derek, always told me: “Good things take time.” 1,600-odd words, 5 coffees (the last of which I’m currently sipping at gently) and 2 teas later I have arrived at my conclusion. My typical reaction when people begin a discourse about god is almost autonomous–my eyes begin to roll as I take a deep breath whose long exhale is paired with a sigh that stretches its length and I…immediately…begin..to…digress. This man deserves more than that. His experiences as a refugee from Zimbabwe are tied inexplicably to my illness (though it makes sense to us.) It has allowed him to truly understand a definition of things like isolation and abandonment, and the brilliant thing about this more-worldly-than-me individual is that he is from somewhere different. He is from a different continent. His skin colour is different. His manner of thought and the way in which he conducts business is different (there is a former employee of Parker who once told him: “anything you don’t know, we can teach you, but what you already know, we cannot.” The uncanny way he holds my head up and pulls my eyelids open so that I can see is different, albeit well suited to me, given my oft disdainful air for authority. Adroitly, the way in which Parker chose to deal with him is somewhat different. Fasten in y’all (hey, I’m just another poser Alberta boy by way of Calgary) and follow me through this incredibly introspective post, if you will. Tears, many due to sadness, more due to the overwhelming joy and satisfaction which begins to rise in me each time I draw some kind of seemingly enlightened conclusion (e.g.: “I Hate it When I Badtrip”) may follow. SFW, I will still call this 14A, as it may have an undesired effect on some. So Reader discretion advised.

Hi Bernard,

The attached image is what Quentin has and likely always will refer to it as “Power Saving Mode”. This is something which occurs daily. At noon. Probably at 2:00 PM also. 4:00 PM for posterity.

I perfected this art in my high school days (1995-2000). I was a silly, angry teenager who had a lack of respect for the way some individual projected their authority. If I even went to class, there was a high likelihood that I was not really paying attention. It worked for me. This manner of thinking came about because I’ve always been exceptional (full credit to both my Father (who embraced my love of all things tech) and my Mother (who more or less did everything else, from the very first story I wrote to my continued improvement in any and all academics.  She has always been there to steer me the right way. This spilled into my professional life; too, in the way I am so easily able to conduct myself properly when I am in a group of non-peers. And the thing that she has perfected is how to best frame things for me, and then allowing me to accomplish them myself (kinda feel like a stompy child (♥ you, Jo!) as I wrote that now.) But my experiences say I was sort of on the right-ish track; within the first month of the second grade, my instructor handed me the final exam for that year. I scored a 90% (notwithstanding, I am an October baby and I was right around the cut-off date—the effect of this was that I went from being the biggest, fastest, and strongest kid on the playground to being the smallest, weakest, and slowest. Malcolm Gladwell muses over exactly that in his book “Outliers”. I still remember my first day of grade 3, and being forced to catch up because I was previously occupied with grade 2. My schoolmate, Catherine, attempted to teach me cursive.  I got my first pair of glasses that same year. Thus, skipping a grade+glasses+honour roll student (until grade 9)=geek. It’s ok, I OWN my geekdom. The cherry on top? I was the only boy—I grew up with 3 sisters (2 older, one younger), an infirmed father (though unbeknownst to me in my youth, and truly until I fell victim to a disease by the very same name, though that is where virtually any similarities in our respective illness ends—and a mother who was forced to do it all.

 I’m not going to sugarcoat it: my MS has left me weathered. It has at the same time, regardless, taught me so much; you really can only truly get it if you suffer from it (sorry? You’d rather not know.). I have come to a few conclusions in this wizened, jaded state in which I exist:

The pathogenesis of my MS is different than that of my Father’s.

My disease progression is different than that of my Father’s.

My familial and financial situation is different than that of my Father’s.

My professional life is different than that of my Father’s.

My relative job security is different than that of my Father’s.

I’m starting to get the feeling that I am unique!

Fittingly the answer to that question must therefore be no, I am not where God wants me to be. Upon full contemplation, if he is in fact creator of all things, he made me unique. He made me different. I’ve always known this. Mom has always embraced this. Listening to everyone all the time is wearisome to a level incomprehensible to most (you can rest assured people always know either what is best for me or for best for my MS—when all the things I really need are things such as a hot meal, or someone to spend some time with me). I read Chicken Little at a young age (another testament to my Mother—she fostered both a will and a desire to read as well as write—and as it is with all things in under her tutelage, I ran with it…like the wind.) But such intangibles are so easily overlooked, though—and the real bit*h of it all is how impossible it is to elucidate others, in part because I vociferously refuse to walk around under a storm cloud. A further testament to my Mother—this Blog exists in large part because of her (though separate from the Catalyst, she is the metaphorical god-darned pit crew, keeping my fuel tank full, my Car clean and rightly oriented, even taking the lead when necessary and allowing me to drift behind her (sorry about all the #Nascar jargon, but it, like all things, is enjoyable in the right company.))

Those differences between my Father and I are inarguable, as inarguable as decisions based on emotion. I know this because I live it every day. For the rest of my time on this wonderful, hazard-ridden, beautiful, gorgeous, ugly nasty Earth (thanks KW!)

I feel a storm cloud beginning to form. Darn you, Mr. Patel. This is something you enjoy doing to me: you ask a question to which I already know the answer, and watch me bounce around like a rubber ball. Because you command my respect, and there is no lesson which goes unlearned, I owe you as much as to be pensive and really think about your interrogative, and eventually I figure out that you expect and want more  from me—because you know me, sir. You got a slate which was half blank in me. I’d say we did alright.

-Andrew

It

I have been poked–keep in mind this is not a Facebook activity. For me, nothing beyond photos and videos of the family, my blog, the occasional (arguably) comedic status update, and keeping in touch with people I used to know. This is something, as it is with many others, which I enjoy. I believe that if you are going to think of a person as a friend there is the smallest, easiest, and most pleasant task that you must undertake—you must communicate with them.) It is not unusual for me to throw a quick hello to my friend, Angela (Angie) in Verona, my friend Luisa in Sao Paulo (now a vascular surgeon, if you can believe that!!) So keeping people in my life is very important to me. Why did you ever become friends?

On point, I have been poked. I have been prodded. I have turned my body into my own “Lake Springfield.” (no three eyed fish yet, thankfully).. I have been through 3 years of monthly chemotherapy, 2 surgeries (venoplasty in Costa Rica and an extremely invasive neurosurgery which took 12 hours over 2 days to perform and which I am just coming out of recovery from…), but still—it’s still there, jammed right where you think—that stick up my ass. While traditionally keep in touch with people that I have known, I suppose, upon further reflection that I equally loathe having to interact with those are not already stored under familiar/recognizable/safe to me. From birth I have maintained this nonsensical flat out refusal (I am really stretching back here) to interact socially (and professionally. And academically. And athletically. And romantically.) I will give you an example: my elder cousin was once a Camp Leader at Beavers. I still remember the extreme discomfort I felt the entire time I was away. The intent was likely to encourage me to begin thinking that “Scouts meet new friends, learn cooperation and teamwork and develop self-confidence”. It may accomplish that for some . I was never good at relaxing and letting my guard down. Entrenched I remained until two things occurred to which, contrary to what I thought, I had a positive reaction—my MS and the torrent of writing that was then unleashed. My MS because it forced me to stop being the twitchy, caffeine-addled, nicotine addict (I’m a smoker. I have been since I was 14.) Workaholic loner who wasn’t so great in  the aforementioned areas of my life.

Socially, I needed a proper lubricant for anything in this realm that I have ever achieved.

I prefer beer, but Goose will always. Glenfiddich would suffice in its stead.  That’s kind of what I should stick to.-  Rye turns me into a serious asshole, tequila and I got into a fight when I was 14 (it won) and have not made up.  I’m not a real drinker—so I stick to what I know wonderfully advertised overpriced branding and all.  Left to my own devices pre-MS, I  simply chose to fly below the radar as much as possible

Academically because I just didn’t want to play. I was an honour-roll student in my elementary school days, then grade 9 happened. I began smoking Pot, having the odd drink, smoking cigarettes, and being an insufferable human being known as a teenager. I preferred not going to class over going. As a result of this, my grades suffered. I nonetheless I obtained my (IBMY) High school Diploma. My application to the ridiculous institution of Cégep was met with a letter of refusal. By the Department of Computer Science (Captain Hindsight strikes anew!). My high-school History Professor always maintained that the only thing you need to walk out of High School with are the abilities to read and write. But High School in Quebec does not teach you to write properly. I guess that is what Cégep is for, but can’t Grade 12 get us there more quickly? The inanity of it made me want to pursue my education elsewhere.

Athletically because I’m just not so inclined. I was never a spectacular team player—my Father had to literally throw me onto the basketball court when I was 10. I did alright, but meh. Same with soccer and baseball, These things failed to captivate me. I began to grow more allured by screwing around than

Professionally is the least problematic of that list for me, but again, I stick to what I know. Parker scooped me up and essentially sponsored me. Parker has always been somewhat patriarchal to me. We continue to enjoy a symbiotic relationship to this very day.

Romantically because of that same stick shoved in that same place I mentioned earlier.

Despite the copious amounts of medication I have either been prescribed or elected to take OTC, that cursed stick there remains. I guess I will just have to learn to live with it. I’m learning each and every day how to live with my MS. I suppose a stick up my ass is no problem in comparion.

-A.D.

Insanity vs. Inanity

This is just ludicrous. I didn’t even realize the amount of stuff I was polluting my body with. I worked so hard to remain as objective as possible through–everything–that I stopped caring about being poked and prodded and just started to think of my body as a (broken) machine and was a compliant patient. Through it all. Now I find myself no longer beholden to Big Pharma. For now; the truth is, at the moment, there is nothing to modify the natural course of this disease. My disease. Realistically, I will likely need to resume treatment. But not tomorrow… Insanity meets inanity in this post!

 

I would like for all to know that while my information is accurate, I am in no way a medical professional. Further, MS as it was just covered is specific to me—we all have our own unique biochemical footprint.

My name is Andrew Durso, I am 30 years old. In 2007, I was diagnosed with a chronic, lifelong illness—Multiple Sclerosis (MS). I was counseled by my Neurologist to choose between 4 medications— Copaxone, Rebif, Avonex, and Betaseron (the only available first-options at the time, known as the C.R.A.B. drugs). What did I know of such things? My decision was thus based entirely on the method of administration and my relative comfort level with injecting myself. Thus, my options became: a subcutaneous injection (known as ‘SQ’, frequently referred to as ‘Sub-Q’, or under the skin) every day (Copaxone), a different Sub-Q injection 3 times a week,  an intramuscular (IM) injection once a week (Avonex), or a a subcutaneous (SQ) injection every other day (Betaseron).

I settled on Rebif. My disease progressed quickly. Within 8 months of my diagnosis, I was confined to a wheelchair. Six treatments and two surgeries later, the most incredible thing happened to me.

As of March 1, 2013, I have not consumed a single pharmaceutical product. I have instead been medicating exclusively with Medical Cannabis. I purchased a battery operated, portable vaporizer to facilitate consumption. I asked for and received a medical exemption to purchase, carry, and possess marijuana.

Please understand–I have a great job. I have an amazing family. I thought my days with pot were behind me. But this is no longer high school. It is a FACT that I am enjoying good health right now. Understand: I don’t want to get high. I’m sick and need to medicate.

I now consume Medical Cannabis for all that stuff that I was taking those 20 pills a day for. And, for me, it works.

 

 

Medcation History:

Prescribed:

-Baclofen – 10 mg tablrets 4 times daily (to control spasms, medical cannabis achieves the same effect)

-=Clonazepamn – 0.5mg pill 2 times daily (for tremor control – medical cannabis achieves the same effect)

Detrol L.A. – 4 mg capsule 2 times daily (to calm my overactive bladder muscles – medical cannabis achieves the same effect)

Treatments:

Rebif – 44mcg injected 3 times weekly (interferon 1a)

Tysabri – infused in a infusion centre. Dosage is based on weight, every 4 weeks

Mitoxantrone – chemotherapy1 agent used primarily to treat leukemia, 1.5L infused at hospital every 4 weeks.

Cyclophosphamide – chemotherapy1 agent used to treat various Cancers, 1.25 infused every 4 weeks for 3 years with future regimen of ever 8 weeks.

-Current intent is to resume Tysabri.

Surgeries:

-CCSVI venoplasty

-Open brain surgery and installation of Neurostimulator for tremor control

Over-the-counter (OTC):

3.1,000 IU Vitamin D twice daily

4.350 mg of Calcium Citrate or 500 mg of Calcium Carbonate twice daily

7.1 horse-pill sized multivitamin

8.Omega-3-6-9 capsules (containing 400 mg of EPA and 200 mg of DHA thrice daily

 

1                   Chemotherapy always indicated or use with steroids (1L of Solu-Medrol delivered via infusion and unknown quantity of Zofran (anti-nausea drug delivered via infusion.

Andrew Durso
Vice President
Tristan Williams MS Foundation (TWMSF)

Resources:

Neurology-2003-Goodin-1, obtained from http://www.neurology.org/content/61/10/1332.full.pdf‎
MS Society of Canada_ available at http://www.mssoiety.ca

 

 

 

 

 

 

 

 

I love it when i WIN

For Ace Milner…

I love it when i WIN. Let me explain some quick concepts and tell you a lovely story about the WIN Strategy, where I learned what WINing is, and the methods I use to keep WINing. It comforts me enormously to write. A blank page is my personal retreat to compartmentalize and truly think.

Where on Earth did I learn something as obscure as the WIN Strategy? It may sound like one of many corporate strategies that shift frequently. It’s not. Parker taught me how to make it a way of life. Similar to everything else Parker Hannifin and my peers under their employment taught me, it was repeated. Again. And again. And again… This kind of indoctrination is precisely what I needed. I suppose I craved structure even in my youth.

the following is what has been playing on repeat in my mind since 2002.”The foundation of the Win Strategy formalized the idea that encouraging employees to take action and ownership in their work will enable us to improve our performance and achieve our goals.

Remember when I said I own my disease? If you missed it, see above. My peers and I were equally committed to fostering a clean and standardized workplace. We had a common goal–increasing efficiency. Parker challenged me to achieve this by rewarding me for anything, no matter how seemingly inconsequential, to expedite our arrival at our destination. The ultimate goal is the bottom line, and this is what Parker owns. From their corporate governance to the thick of the shipping bureau, the customer service desk, or the manufacturing floor, all follow the same line of thinking—if I can make my job easier (make more money for the company), why not do it (increase product flow from assembly to end-use hands, which results in better everything. Your product comes from manufacturing with more speed. Wait times decrease. Cash flow becomes invariably more fluid. And what does this wonderfully innovative and well-oiled machine create? A renewable energy source (or idea source) which comes not from some consulting company, but from the guy who spends his days running the machine, or the Order Desk worker getting reamed out by a client because they have open orders which  haven’t yet shipped. These are the people Parker empowers to improve performance.

And so, it was (and hopefully still is.)Sheer brilliance—when did asking the person who manufactures something how to make the process better become novel? Parker taught me much. University showed me to focus on the task at hand. All you need to do is open your eyes—it’s as simple as that. In what is an almost Jobsian (I haven’t been keeping up-to-date with my pop-culture knowledge—did I just make up a new word that pins the efficiency and creativity of Apple (I’m still and likely always will be a hater) onto the shoulder of Steve Jobs?) Regardless,, the indelible lessons learned over the course of my career are now serving me well. When I successfully navigate my way through the piecemeal setup in my bathroom and get into the shower autonomously, well folks, that’s a WIN.  When I get 6 loads of laundry done in a day (granted, it should never get that way—that’s where ownership comes in,) that’s a WIN. The fact that I have been off all pharmaceuticals since May is a huge WIN.  So Parker’s corporate mantra has been somewhat modified:

The foundation of the Win Strategy formalized the idea that encouraging employees to  (I must) take action and ownership in their work (everything I do—trust me, it’s all work) (it) will enable us (me)  to improve our (my) performance and achieve our (my) goals.”

The transformation of the philosophy behind everything Parker has been a tremendously beneficial thing for me, far as things go. It was only made possible when I paired everything Parker with University–I began to notice that ‘I was able to take pause, orient my thoughts, and work through a problem.  I owe just as much to two entry level University English classes as I do to Parker—they taught me business, school gave me focus, often an ability to see what is so blatantly obvious that it flew right by me. Notwithstanding, I have an overabundance of time to think. I have an affinity for obscurity—some ideas are good, some bad. As long as I keep trying, I will WIN.

Resources:

http://www.parker.com

Concessions

Before you begin this, bear in mind that in the end, all things are equal. “All living organisms have mechanisms to sense and respond to changes in their environments” – Young LR, Oman CM, Watt DGD, et al. (1984). “Spatial orientation in weightlessness and readaptation to Earth’s gravity”. Science 225: 205–208.

I have not at this point learned to dance. I mean dance, not the senseless jumping around and flailing of my imbs like back in what now feels like a separate life from the one I currently exist in. I’m smiling to myself because I was sort of given a unique opportunity—I have had many experiences throughout my youth as an able-bodied man. I have lived in Montreal and Calgary, I have had a driver’s license, I have owned a vehicle. I’ve held the same job since 2002. I have opened a bank account. I have applied for and received a line-of-credit as well as a credit card. I have had what I would like to think of as a successful dating career. Some say better to have loved and lost. To those adage-lovers, I say: “Are you kidding??” But through everything, I never learned to dance.

It is perched just out of reach in what is apparently a never-ending battle between the things that I have always wanted, and all those concessions which I must take into account under the “things I no longer have the physicality for. “ Still—I never learned to dance.

I am alright with wheeling onto the dance floor with very intention of doing what I have traditionally done…bust a proverbial move, as it were.

It grows wearisome, this never-ending game of keep away which  I have no choice but to play. Learning the most effective way to relegate myself to amending my traditional understanding of dancing Is just one more thing that I must adapt to. It doesn’t require much effort- I have always tried to just help people. I maintain this attitude to this very day. I suppose I have being brought up Parker to thank for this. I have no idea how many times we discussed identifying root causes of problems, advanced problem solving tactics, and watched as a fortune 500 company made concessions to keep our customers happy. Consider this a corporation of such stature making concessions to a Mom & Pop Shop! Did I ever take that lesson in, eh? Because it is that Mom & Pop Shop who pay the bills. I liken such a viscerally corporate entity making concessions to end-use account to me making concessions to my disease (any reading this who may be engaged in business practices with Parker may have noticed a comparison between my end-use accounts and my disease. I apologize for this. The fact that I have taken pause for even a second should show with the utmost clarity what kind of company Parker Hannifin is.

While I may have been forced redefine something as casual as dancing, it is brought to me in the only way that I would possibly make a concession such as this (words are very important to me—they always allowed for flexibility in my high-school years, which was always a pleasant change from the rigidity of Science.) The familiarity I have been building over a lifetime with all these words that I am now forced to redefine is difficult for me. It is a bitter pill that I must take–those definitions are comforting to me, but like everything they’re fleeting.

I’d like to say that I do not like the word handi-capable. I find the hybridization of these words (handicapped and capable) borderline offensive. I know that i am disabled. And I also know that I OWN MY DISEASE (in the words of one Jesse Pinkman: “bitch.”) My disease doesn’t own me. Instead, we have a 60/40 split. Trust me; I was left out of the negotiations.

I also know that the final truth is that I must respect my disease–otherwise, I pay the price. And just as it is with many things in this world, the price follows the societal trend and only increases with time.

But still, in the depth of experience that I have been amassing is all part & parcel to the person I am, love me or hate me. I suppose that in the end, whether I can dance is irrelevant. What all this writing has culminated in is the realization that I must concede. In parts of life beyond what I have known for a lifetime vis-à-vis the practical definition of words. And thus, I will adapt. It’s i. It’s in my nature. My professional background has fostered experience dealing with the most irate customer I have ever known—my illness. That’s it. There is so much seemingly grim finality when many are living with a chronic illness. I chose, therefore, to just think of it as another bad day at work.

With my most irate customer who persistently has me making concessions.

-A.D.

Resources:

Fatigue, sleepiness, and physical activity in patients with multiple sclerosis, Merkelbach S, Schulz H, Kölmel HW, Gora G, Klingelhöfer J, Dachsel R, Hoffmann F, Polzer U © 1984, Heinrich-Braun-Klinikum Zwickau, 08056, Zwickau, Germany. stefan.merkelbach@hbk-zwickau.de

Statistical data courtesy of StatsCan.

Just another victim of Regulation

Don’t get me wrong; regulation, particularly in the banking field, is a good thing. Regulation is why Canada fared so well in the massive financial crisis that essentially decimated the American economy. Regulation is why we don’t see people defaulting on the kinds of mortgages that were being handed to people who simply did not have the means of sustaining themselves financially–and it’s that regulation that is the reason; no Canadian bank would ever approve someone with such a high risk factor. This, much to my chagrin, is the result of proper enforcement and having the right checks and balances in place. Canada has a history of not being the most financially adventurous nation, and relies instead on pragmatism and the aforementioned regulatory framework to keep our books in the black. I’m proud to be Canadian–everyday. I’m proud because of that intrinsic regulatory framework. I’m proud that instead of being a nation more or less defined by the glaring inequality between the rich and poor, we take a more Socialistic stance; universal healthcare is number one for me on that list.

Granted, no system is perfect. I get that—something that should have been a very normal life- event for a young person, despite the fact that I’m living a life less ordinary, was rapidly moving out of my reach…

I struggle everyday with everything; I wake up only to discover that I continue to be paralyzed from the waist down. I’m lucky if I awoke dry, either way, next are my morning calisthenics. This starts as I make my first transfer of the day, reaching for my legs as I lift them out of bed. It continues as I finagle into  my chair, doing my best not to fall mid-transfer. I make my way to the shower (the eternally frustrating thing is that the shower is too small (they’re all mostly stand-up showers nowadays, not really the best for me.)

And that’s the crux of this post; I need to find a property that I can both rent and adapt. Rent  because that wonderfully Canadian regulatory framework has me setting off more bells and whistles than you could even begin to fathom. I would most certainly be approved for a mortgage, but only if I made a 20% downpament, and then +++, taxes, insurance, all those mortgage-related expenses. So option 1 is a bust. Owning is out, I wouldn’t really want to assume liability either; I don’t want to have worries about whether the building needs a new roof, or whatever. I don’t want the burdensome financial weight of being tied into a mortgag. Don’t forget; I’m on a disability benefit whose maximum payable ranges from $888.48 to $1,212.90. I think this wage is paid as a percentage of your last recorded salary. Needless to say–I’m no longer in that safe-zone that I previously enjoyed. No, I’m surely better off renting. As far as my options go.

Never would I have imagined this very real and frequently recurring life change–moving–would become so inexorably difficult. Difficult because I no longer occupy the same spatial relations which I spent years learning; nobody really has to THINK about the space and time occupied by your body. You just know…but what if you could no longer tell?

Enter proprioception; instead of doing something through touch , my eyesight must constantly be engaged. Take, for example, a late-night bathroom trip; historically, i would roll out of bed, go to the washroom, and be done with it. Now, all the lights come on–after having suffered from optic neuritis in both eyes, my low light level visual acuity, like everything else, has fallen victim to my illness and has been replaced by literal holes in my vision.. My LIFE  IS HARD. Not only had my life transformed over such a brief period of time, but I now had to learn everything anew.

I guess regulation is really intended to work FOR YOU. The reality is that this life is unenviable. As it is with many things in the grip of a lifelong illness such as MS, I can’t help but feeling nothing more than that infernal claw clutched around my throat; it’s no way to live at all. It’s really…exhausting. My energy level has already taken is  a  serious blow. And it continues to be pummeled in what, at this point in time, is only going to end in one of two ways. Think about it’s LOGICAL end– I’m not morbid enough to contemplate that story. And so, I FIGHT. Everyday. Because I have to. From the early morning to the very end of the day. Everyday. Forever.

And compounded by everything which you’ve just read is one additional inconvenience for me–the fact that I am just another victim of Regulation in Canada.

My 30th birthday is next week. My first trimester of life and it’s certainly been eventful, despite being unenviable. Soldiering on must be my way forward. Life’s not so terrible. I’m an Uncle twice over. I want those children to learn tolerance, acceptance, and (most difficultly) how important a good academic background is. It took me 30 years—hopefully they take my advice!

-A.D.

Jumping ship

I have moved my fair share, of this, you can rest assured. For a few years in Calgary, it was an every-six-months kind of thing (my profound thanks to the “Morrismoving Co, Inc.) but now I have found MY home–with Malissa, over in Forrest Hill, a stone’s throw from all the wonderful yuppiness that is incorporated in Westmount.

Wait a minute? Westmount? Malissa? What the heck is going on?

Let’s backup…

My last post was replete with whining about a Urologist, bantering on about a suprapubic catheter that I was weighing having “inserted”, and got everybody excited for my next round of surgery. I am happy to report that I have accomplished NONE of those things.

The Catheter insertion was good to go–and then next thing I know, I’m being asked to report to the Neuro for a 7:30 am start. They warn you in pre-op that you can be called at any time to report for surgery, but it always seems to happen at a time which conflicts with something.

So my my left hand continues to shake like a leaf in the wind, I’m still weighed down by my endless incontinence issues, but somehow, nothing can make the smile on my face fade. That just might be because…

I met someone. This may factor in to my disappearance, but that is no excuse. The writing that I post is my catharthis. There really was nothing in my life that I minded sharing–but what exists between Malissa and yours truly, well, I think that this is something I’d like to keep private. Needless to say, I’m incredibly happy, I have a beautiful girlfriend whose looks are rivaled only by the size of her heart…

And so now best piece of news; we found a beautiful apartment that we plan on moving into post haste! Actually, we took possesion Mar 10 and we’ve been living the life ever since! I’m excited and nervous and happy all at the same time. With apologies to my family for subjecting them to the fun of moving again, but this is is the one with a little more permanence.

So we’ll end here. I’ve been having difficulty blogging on the iPad – touch screen + tremor don’t go well together – pretty sure I’ve written this pot 4 times. No excuse, I’ve had this desire to get this post out. So quick recap:

1) Surgery is on hold until my platelet count rises–did I mention my second neurosurgery was put on hold? I’m just totally “Malissa-centric” lately, forgive me.

2) Met Malissa and she’s totally changed my life!

3) I am really going to redouble my efforts to keep my blog up to date. Just been busy.

Let’s keep it up, yeah?

-A.D.

Suprapubic say what?

We all know how the tremor was my most hated symptom of this insidiously insufferable illness that follows me everywhere I go, limiting my movement, turning everything I want so badly to accomplish into, at times, what seems like an insurmountable challenge. That, however, has become a thing of the past, all thanks to a surgical intervention. Dr. Sadikot, the brilliant, kind, and all-around nice guy with a fantastic bedside manner, has reduced that particular symptom of my disease to something a little more manageable. Though not without risk–there was a 2% chance I could bleed out on the operating table–but this was so negligible for me, it never even weighed into my decision to go forward with the surgery.

They cut open my head, installed electrodes in my left thalamus (any professionals reading this, feel free to correct me) to control the tremor in my right side, and I anxiously await the day when we do It all over again to my right thalamus, with the hope that there is as much improvement as I’ve seen on my right side. All things being relative, however, I don’t have as high an expectation for the right thalamus/my left hand; since the disease grasped me with its relentlessly tightening grip, my left hand has been impacted much stronger than my right. I remember, clear as day, my former roommate Jami spending, oh, I don’t know, about two weeks finding blood spatter in the kitchen from the day I was trying to do something as simple as butterfly a sausage, and, unbeknownst to me, I had cut so deep into my left hand that I’m surprised I didn’t leave a scar. Just to give you an idea of how early, after my first relapse, my left hand was so detrimentally deprived of ANY sensation. I could and can handle “large” movements – grasping, clutching, etc. but the fine motor control has been lost since 2007. It has always felt markedly different than any other part of my body that has fallen victim to the MonSter. Maybe permanent axon damage? I have no clue. As I’ve reiterated countless times: I’m no Doctor, just a victim, as are the other 75,000+ Canadians with this illness. And I do believe that number; it is the higher end of the spectrum, but I think it is nevertheless realistic.

So, in time, my head will be cut open once again, electrodes will be installed, and more wires will run down my neck in order to battle the tremor. Why not? I just need to be sure to stay away from cigarettes and anything else I can smoke. Piece of cake!

I want to figure something out for the urinary incontinence, though. It’s my new curse. I am so very tired of waking six times through the night/morning and scrambling to get to the toilet. I suppose I can consider myself “lucky” – I don’t need to cath overnight, nor wear diaper to bed. No, I can still sleep without any sort of incontinence product, be it a cath hooked up to a 1L overnight bag, or a diaper. Lucky… yeah, right. To amend this issue, if they could locate the lesion in my brain that is the cause behind it, I would unequivocally ask for it to be lesioned – you heard it here, folks; I’d let a competent neurosurgeon (no “Dr. Nick’s”!) cut away at the plaque/lesion responsible for this awful symptom. It’s awful because inserting something up my urethra always leads to infection. It’s awful because using external catheters often leads to failure. And it’s awful because I don’t have any inclination to wear diapers for the rest of my life.

So the one Urologist I’ve seen suggested a suprapubic catheter – a line inserted directly into my bladder. One Neurologist I spoke to counseled me away from this idea, but that was, perhaps, not the best idea. I need a second opinion, and I’m praying that the results from the urodynamic assessment that I had done already are still floating around in the MUHC databases somewhere…

I’m tired of falling. I’m tired of losing weight despite eating 3 meals a day. I’m tired of consistently soaking my skivvies. I’m tired of fighting. It’s not much of a life… But it’s the one I’ve been handed. So I’ll keep fighting because it’s what’s expected of me. And that’s what I need to do. But I’m tired. I’m fed up. And I’m an inch away giving in. At least (much to the chagrin of my family) smoking 3 grams a day kept my spirits up. Consequently, it did also make me lazy and unmotivated to do schoolwork.

And I’ve come full-circle. So… Anyone out there know a Urologist? Whose name is NOT Dr. Corcos…

Anyone? Bueller…?

– A.D.

What did Confucius say, anyway?

I’m too young to be here. I’m too young to be here. I’m too young to be here.

That’s what’s been resonating in my head for the last week and a half, just about since I arrived at Tango. I am the youngest of the bunch (though my hairline begs to differ); most of the residents are old enough to be a mother, a father, some even a grandparent to me. But as time passes, I’m struck with the realization that it’s not about my age. It’s about my level of the very real disability that I have to rollover, and wake up to every day. I have said before that I need help, I have griped and groaned about the accessible housing situation in Montreal. On top of it all, I have been trying my very best to retain some amount of autonomy, to NOT be a burden (at least a heavy one) on my family – even if they want me to. Countless times, my sisters and my mother have offered to open their doors, and let me stay with them. That is, simply put, not what I want, and no long-term solution. They have their own lives, and they need to live them, just as I need to live mine. And so, after a six-month search, going from building to building, looking at condos that I couldn’t even come close to affording, etc., I have settled. Sort of. It’s a process, most assuredly. I still remember being in Calgary, meeting a girl, hanging out at Prince’s Island Park, and baring my soul to her, telling her that my biggest fear was that I would one day be diagnosed with this insufferable disease. That was 7 or 8 years ago, and it all became reality. So here I sit, in the most accessible apartment I have yet to live in (though not without its own shortcomings, however inconsequential they may be) – and here, my life will carry on. And on. And on…

NDG/Cote-des-Neges, bordering on Cote St-Luc – I’m kind of in the middle of all three boroughs of the city. It’s a great area of Montreal, especially for any with mobility issues at the level that I live day to day. At Tango, the staff are courteous, friendly, and ever-so helpful. Whether it’s three in the afternoon, or three in the morning, there is someone here to assist me. Gone are the days of hitting that “panic button” and having to wait for my poor brother-in-law to come pick me up off the floor, praying to the powers that be that I don’t mess myself while I wait. Even my nephew came to visit; I think he liked the place. All the doors are automated, and the sneaky little bugger loves pushing buttons! He was so excited, almost as much as I was to have him here. He’s for sure the cutest thing on two legs then I’m related to! My only complaint is that I have no kitchen, only a microwave to heat food. I eat three meals a day with the other residents, in the common room downstairs. Anyone who wants can feel free to join -$5 for a plate. I am even allowed to have guests stay with me, provided that I inform the administration beforehand.

I don’t need all the services that they provide. I can still shave myself, I can still mostly get on to the toilet under my own power (I am a fall risk, however), I can still shower on my own, still dress on my own, still handle my own finances, and still work on beating down the MonSter. It will allow me time to focus on my studies (I want my English Masters… So maybe in 10 years!), time to focus on the support group that I run with Tristan and Jennifer (it really was their brainchild, I just signed a piece of paper and magically became the VP). He really is the most inspirational human being I have ever met. Lance Armstrong’s got nothing on him!

For everything I’ve lost moving here, I have regained elsewhere. I just have to keep that in mind. But it never hurts to be reminded. And reminded I am, every time one of the staff does something for me, whether it’s picking me up, helping me down, serving me breakfast/lunch/dinner – I just need to remain cognizant of the immeasurable service they provide.

If you enjoy the warm weather, you’re in luck. If you’re like me and detest it with rigorous vehemence – the apex of summer has come and gone, let’s all hope for cooler weather from here on out.

-A.D.