I hate it when i badtrip!

I am snickering silentlly to myself. As is typical in any adapted transport vehicle, we are all sitting in silence. A 50-year old couple is with the driver and I–a gentleman sitting in a wheelchair is strapped into the would-be passenger seat (though he doesn’t rock it like I do.) And again, as is typical, we’re all pissed off. The driver because he is now even more behind in his route. I am typically sympathetic to the drivers–there was a time while I had a driver’s license–but similarly to EVERYTHING that I enjoyed, be it people, places, or things, life wouldn’t ever consider giving me a break. So, despite the fact that he was already 30 minutes late for my pick up, his arrival was met with a clear apology on my behalf. The reality of my situation is that unless you live it EVERYDAY, you don’t really understand. It’s nobody’s fault. MS is a case-specific illness. One of the many problems that come with my MS is that it has left me incontinent. There are measures I employ to keep this out of the public eye (catheterization and wearing diapers). Neither system is flawless, and as such, I am subject to the occasional mishap. And so it was at the best possible moment–as I’m preparing to leave for my 30th birthday celebration–that I had my first mishap. I’m over the fact that I have been rendered incontinent by my MS. It nevertheless remains an awkward subject for most. So, screaming a profuse apology, I informed the (already upset) taxi driver that I was sorry but that I was in the midst of righting that mishap. Meanwhile, the other couple is understandably upset, as their appointment time is rapidly approaching. Lets recap real quick–1 p.o.’d driver, 1 p.o.’d couple, and me. The three of us are all upset–and the core of the issue is that all three of us are left simmering with NO ONE TO ASSIGN THE BLAME TO. People need to come to some resolution when things run amiss. But I can’t be blamed for my disease. The other couple isn’t to blame either. And the taxi driver is certainly not responsible for the almost 3rd world state of the roads in this city. Resolution? I wish–there is so much that I must leave unresolved–the fluctuations in my energy level have left me with no other choice but to adapt to the changing world around me while simultaneously adapting to changes brought on by my illness. I’m understandably tired. And now I’m tired and left with this problem that I see and can do nothing about.

-A.D

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.

The Rules

I practically begged Dr. Patry, my diagnosing Neurologist of the Foothills Medical Centre in Calgary, Alberta, to put me on Tysabri. Honestly, it turned into my Mother and I pleading my case to be put on what was considered, at least in Dr. Patry’s esteem, the “…future of medication in MS.” This, in the end, was just not going to happen for me. Ever. Despite my pleas which were met with a gentle brush-off by Patry, Tysabri wound up evading me. This was way back in May 2007, prior to Health Canada making revisions to the way the medication was labelled, prior to a firm understanding of progressive multifocal Leukoencapolopathy (PML) and the role the JC Virus on the medication. This was to be my first exposure to “The Rules.” And so it began…

The first roadblock jumped up faster than a groundhog fleeing a snake. There was absolutely nothing I could do to make the stalwart (though not to be confused with dispassionate) Dr. Patry budge. His non-reaction to my request to be put on Tysabri was simply a learned response the very same rules that I must now follow. I understand that you are required to be on a first-line treatment prior to taking medication considered second line. I would imagine you can dumb the numbers down to classification system where medications with higher incident rates ultimately wind up more elusive. This is done for the safety of those taking said medication, but don’t be fooled for 1 second. Complications, risk of secondary infection, even death; every incident is recorded as dollar-hungry Pharma jumps to ammend whatever is required by Health Canada. Can’t fault a company for being reactive–their major investment in a drug is a HUGE moneymaker. I guess at some level, they do some strange good in a world where we have become ensnared in the “take-a-pill-to-make-it-stop” mentality because it’s truly “the path of least resistance. I’m certain proper diet, exercise, and rest are what will make my health better. i guess that’s where Ma steps in and always puts food in front of me. I think it moving back with her will help me moderate my 3.5 g a day habit…

And that’s it; to use the old adage, them’s the rules. And just a light sampling of the kind of backward-ass bureaucratic system I have to abide by in order for me to keep my options open. In the interim through, I’m doing my best to hang on to what measly scraps I have left of my health (enter: “le Melodrâme…”—it’s not as bad as that. Problems abound, problems surround. Is it any different for all of you “ambie’s” out there?)

I take solace in the realization that everyone’s got something weighing on them, and any time I can actually be with a group of my peers and I see them struggling with similar roadblocks in their lives… it cradles that semblance of normalcy I more oft dream about more than truly feel.

I’m spiraling…it happens! Psych 100 begins 30-September!

Remember kids; school first!

-A.D.

Now I’ve gone and done it!

90% of the problems I have are MS-related. It really is a brutal disease. Brutal because it can take something critical to your independence away, such as continence, mobility, vision, coordination, dexterity, strength, etc. etc,(or in my case, all of the above including a couple of etcetera’s) and leave you otherwise with THE APPEARANCE of good health. Brutal because it is THE MOST COMMON neurological illness among young adults in Canada — the claws don’t really play favourites, and they willingly twist their seemingly razor-sharp talons into people from as many different races and ethnicities that you can think of (I know, I know; it’s certainly more prevalent in northern climes… I suppose the PQ government should really base their model for tolerance on what i once referred to as “the last bastion of equality” that I could find in this world–it doesn’t care if you wear a headscarf. Or if you’re the pastiest, white-boy in the world. If it wants you, the MonSter will get you.  It doesn’t give pause to weigh whether you’re a good person, which is…unfortunate. Cards I was dealt, blah blah blah, not going down that road, at least not in this post. This post is about what’s left of my face!

First, you need to understand that the wheelchair cushion i sit on is comprised of three parts – a foam cushion surrounded plastic viny, making it easily washable and adding some water resistance, , 2nd is the external cushion cover with Velcro tracks to hold everything in place, including me. Problem is, that 2nd cushion cover with those nice Velcro tracks CAN’T be made out of waterproof material due to risk of me sliding out of my chair. The 3rd and final piece is a solid plastic board, 26″x14″. After that a non-waterproof external cover is the first thing to get washed when my catheter does what it does when i leave it unattended, and don’t ensure my hose is clear, the condom securely glued on (yeah, male external catheterization ain’t fun.) So, my inattentiveness or whatever resulted in 1 – my catheter failing, 2 – my cushion cover needs to be washed. 3 – I’m left sitting on a plastic board and that vinyl covered i interior cushion. No cover or Velcro tracks to fasten everything down. 1 and 3 do not work without 2. But I don’t have the presence of mind to REMAIN AWARE that my cushion is lacking its only safety feature–those Velcro straps. Otherwise, I’m sitting on Jenga blocks that the Claw i mentioned earlier is at times playing with to throw me for a lark. Sadistic claw-wielding son-of-a… Grrrrrr!!!!!!!!!!!!!!

And so i was doing something innocent and benign as ever, i reached down to pick up an envelope, the shift in my weight caused 1 to slide on 3, i fell forward, and unharnessed and not providing any lateral bracing on my arms on impact with the floor. Q is still haunted by the sound of my nasal cartilage being crushed. He called it a probable break and because I’m thrombocytopenic right now, , i was bleeding something fierce. I did what i had to, called 911. Q was here with me through every bloody moment. And then the party started!

Out the elevator walk the two smoking hottest ambulance techs in the city. Q and repeatedly turned to each other in an incredulous stupor and asked each other “what is going on?” or “is this really happening??” And since they were the first responders, they stayed with me until i was comfortably waiting to see a doc at the Vic… The brief time, I was able to enjoy their company, they demonstrated a kind of caring that is lost on many nowadays. They said to me – I’m still a person…

Anyway, Doc says maybe just a sprain (and 2 stitches), but I need to see an ENT Specialist, likely in a couple of weeks… and the cycle continues. Incontinence brought on by MS, lack of balance, strength and coordination brought on by MS. My limited mobility and requirement for a wheelchair – brought on by MS. Cuts deep; young guy, had a fantastic job, was ready to make a life for myself. Instead, life decided to make most of the major decisions for me…

A blog post about self-worth and all that fun stuff i s impending. I think I’ve finally gone and damaged this beautiful face ‘o mine…

Stay on your feet!

-A.D.

He’s baaaaaaack!

I got a bug to write. I was filling out a Google profile, and it sort of merged into this blog post. So without further ado:

I’m a 30-year-old guy living with multiple sclerosis (MS). The disease ravaged me pretty hard; it was 10 months from my diagnosis to me being in a wheelchair full-time. Then the tremor set in. There’s more, but I won’t bore you with the details.

I have tried just about everything to slow down or stop my disease progression. I’ve been to Costa Rica to have  veinoplasty performed.I have taken a number of varying “disease modifying therapies” (DMTs), both Rebif as well as (though short-lived) Tysabri. I then had one of the foremost neurologists in Canada look at my MRI, and he counseled me to avoid  Tysabri as it was still new on the market and there had been some… Incidents. His recommended course of treatment, however, was just as aggressive as my disease; chemotherapy. First it was a drug called Mitoxantrone. Piece of cake. No side effects. Was once every three months. But again, it was short-lived.  There is a lifetime limit to how much mitoxantrone you can be dosed with. After nine treatments, it was on to the next monster; cyclophosphamide. this is a far more aggressive antineoplastic, used in a variety of cocktails and to treat everything from breast cancer to pancreatic cancer. Neurologists like to use it to dampen your immune system and it has been shown to have some beneficial properties to those afflicted with MS.,. But don’t think for a second that it doesn’t come rife with side effects. So, I was in chemotherapy for I think roughly 3 years. And then I was forced to discontinue so that my  red and white blood cell counts would return to normal  in preparedness for open brain surgery. I underwent a procedure called “Deep Brain Stimulation” (DBS), a two-part procedure. Where I underwent open brain surgery for roughly 6 hours, fully conscious (I think you need to be conscious for any brain surgery). My neurosurgeon then performs “stimulation” by connecting a lead to my left thalamus to control the tremor on my right side, running electrical currents directly into  parts of my thalamus that would eventually be wrapped with an electrode inserted into it to transmit the electrical signal that would no longer be routed to the proper pathway by my brain on its own,  and instead would be routed through a neurostimulator that I had implanted the following day in the second, 5-hour portion of the procedure (for this, i was put under twilight sedation). So now, when I hold up my right arm, the synapses that are consistently being fired by a my brain are now being routed through a device. A device that is actually chock-full of side effects. The cool thing about the neurostimulator is that I can turn the therapy off. Literally, the second I do, all the side effects that  it brings on disappear. I’m not joking when I say it’s pretty serious; I can’t at all speak French when the stimulators on. Not that I can do it very well, but it’s far more strained when the therapy is active. I can’t roll my R’s. I can’t sing (I could never sing well,, but but when the damn thing is off, I’m either rockin’ out to Rage Against the Machine or macramé’d to my sofa, pathetically curled up what  can only be called a big  ball of emo.

Okay, everyone’s waiting. Big changes. Again.

Malissa and I are no longer seeing each other. It’s a tale of woe, mistakes being made on both sides, not many breakups are easy. I only hope we remain friends. But the rest is between us.

My days living in “Le Forest Hill” are coming to a close. My oratory view is going to be a thing of the past, but so too is my enormous rent payment and borderline unmanageable on my income alone. It’s coming, before I know it, my 30th birthday will come and go and then I’ll start making my way to 31, but after going through in the last year, I finally put some serious and thought into what I need to do to best manage my disease, my responsibilities, and the relationships that I’ve been building over a lifetime. And so; I’m coming home. I’m moving back in with my mother. The truth is, she’s pretty astounding woman. Straight up, you can easily describe me with two words: MAMMA’S BOY. It’s sad but it’s the truth. I was missing a brother to beat me up or let me hone my fighting skills on him. I am what I am. So now, the challenge is finding an apartment that suits our needs. We are going to look at a prospective place on Sunday, tomorrow. Hopefully, it is everything we need.

While Malissa and I were dating, I repeatedly shirked my responsibilities as a friend to many, as a VP to the Tristan WilliaMS MS foundation, my family, and my friends. This was not her fault; I got so far entrenched in our relationship, in part because, after being single for five straight years, it was novel again. In addition, well I’m not going to lie; I missed someone wanting me.

My way forward though, I think is to be one of bachelorhood. The problem is, if I start dating somebody, I stop taking care of myself. And this in the end only kills my independence. I recognize and accept that I need help, but I do also need to challenge myself. Every day. For the rest of my life. Because that’s how it is for me. Wow–a wave of serenity just passed over me. I know I always say this, but I need to write more often…

I’m likely going to disappear again until the move is done and things get settled. My solemn oath to all you people who read my drivel is this: expect more drivel in the near future. And more often.

Enjoy the closing days of summer… Not sure what happened there!

-A.D.

The Call

Good news–I guess? Is having a date to have my head opened a good thing? Jury’s still out on that one, but for me, my anxiety level, the fact that I’ve been cleared by a 3-specialist team, and the fact that I was given a much clearer M.O. on how the entire surgery will go down all make me feel comfortable, inasmuch as such a thing is possible when facing a surgical intervention of this nature.

Step 1 was only clarified this morning for me – I am to report for a blood draw, hopefully one whose results will be returned post-haste. Once my platelet count has reached the appropriate level, they will determine whether I can be cleared for surgery. If my platelet count is still low (and it needs to be at a high-level for neurosurgery), they will provide both a platelet transfusion as well as something else called auto-immune ITP, a medication with which I won’t bore you with details of mechanism, etc. it is just used in surgery to increase platelet counts.

Provided my platelets have risen appropriately, I’m to report for surgery Tuesday morning. At least I get a free haircut!

Anyone reading this, please turn your thoughts to my friend and founder of The Tristan Williams MS Foundation (TWMSF) and “The Road to You” support group, created with such vision and fierce resolve–Tristan Williams. All positivity to him today!

-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.