The MS Claw

It’s truly an evil disease, this MS of mine. I’ve been using these blog posts to keep everyone up-to-date on fund-raising efforts, the events to ‘give back’ for those who’ve contributed, but I haven’t really given a reaction beyond telling people how thankful I am, how oh-so-humbling this experience has been thus far, how I am elated at the incredible response I’ve received from friends, family, strangers–but I’ve failed to give my own personal, first-person point-of-view of precisely how I feel about all of it. So, indulge me; let me ‘exhale’ on all of it.

I’m scared. I’m scared. I’m scared.

To put it in the right ‘frame’, you need to know that my Father was diagnosed in 1985, a couple of years prior to my entry into the world. As a teenager, I watched my Father’s disease progress–his own personal ‘MS claw’ had a grip, though the speed at which his claw grasped him was entirely different. It was 10 years before we began having to pick him up off the bathroom/bedroom/living room floor and help him get back to his feet. It was 15 years before its talons began to break the skin and draw blood; that is to say, before he had completely lost his ability to walk. He now lives in long-term care, his MS claw never leaving him, its grip only ever tightening as we all look on, helpless, powerless, and impotent to do something, anything for him. This understandably really defined what my biggest fear was.

That, one day, it’d be ME being picked up off the bathroom/bedroom/living room floor. That, one day, it’d be me being grasped, clutched, left scarred and bleeding by my own MS claw. Then it happened. Biggest fear become reality. To my astonishment, the craziest thing happened: I dealt with it. And I continue to deal with it, as the claw tightens and loosens its grasp, I adjust. It never lets go. It has cut me several times. I can’t walk. I can’t type. I can’t contain my bladder’s contents. I have ‘difficulty’ with romantic intimacy (I will allow you, to quote the Immortal Bard, to “take it in what sense thou wilt”–use your imagination…).

But I deal. Everyday. I find it astounding how well a person can adjust to change–we all hate it, most of us, given the option, never would–but when you lay your cards out, drop the ones that serve no purpose, and focus on what matters and what’s important…and hope that you can pick up what you were missing for a good hand, the resiliency of the human spirit can take flight; if you’re as lucky as I am and are surrounded by courage, strength, and lots of good ol just plain awesome. I find it in my family. I find it in my friends. And they’re all pulling at the claw, trying to help release me from it’s seemingly herculean grasp. It’s why I’m still here. It’s why I still believe life is worth living, whether I’m running, walking, or rolling…

But I’m still scared.

I’m scared the $20k+ that my friends, family, et al helped me raise is all for naught.

I’m scared that I may find some relief from endovascular therapy only to watch and feel the squeeze of that claw as it does what it is programmed to do and just keep on squeezing, breaking my skin, drawing blood, leaving me scarred with no hope of recovery.

I figure since my biggest fear became my every waking second…it’s about time I found a new one, yeah?

One might say I’m being melodramatic. And perhaps I am. But despite how irrational it may seem and despite how easily you as an objective 3rd party may be able to poke holes in my fear-theories…it don’t take ’em away.

The claw’s still there.

Its grip is still getting tighter.

1 month to the day ’til the plane hits the tarmac in San Jose. Until then…1 day at a time.

-A.D.

Megalomaniac

It’s more than just a song by one of my favourite bands–keeping myself grounded lately has been, shall we say, trying. It sounds a bit ridiculous, but put yourself in my shoes for just a moment. I’ve lived an unexceptional, extremely normal, and very low-key life, for the most part. I have yet to grow into a Nobel laureate, I’ve yet to make an indelible impact on society at large, and I’ve yet to be the harbinger of World-peace that I am in the ‘imaginary-world-I-live-in-on-the-odd-weekend’. None of it makes much of a difference, apparently.

$17,675. Incredibly, this number crept up on me -before we were even half-way through the fundraising events we’ve planned. It has left me perplexed, bewildered, and at a loss–a loss for the right words to appropriately express the depth of my gratitude. At a loss to find the best way to reciprocate the unbelievable, at times frightening generosity pouring in–from folks I know, folks my folks know, folks whom I’ve never even met, it’s enough to make my head grow even fatter than it was prior to the ‘Fix-Me’ run I’ve been on for the past month.

With many thanks to Steve and Rich P. for hosting a kick-ass party, and to Theratech for their generous contributions–from buying little chocolate bars at the office to the literal outpouring from every level, and to Lana Lee Fashions, who helped make the night a success. Thanks to my Aunts, my Uncles, my cousins, my in-laws, and at the ‘grassroots level’, thanks to my sisters–the whimsical trifecta they form when assembled is virtually unstoppable. Thanks to Enotech Mozza for their generously unsolicited support. Thanks to Casa Grecque and the crew there for helping turn the night into a success. thanks to ‘Mark-of-the-own-paragraph’! Thanks to my friends, from so many different parts of my life — from elementary school, high school, the troubling years post high school, etc. Thanks to my grandma, who sadly, I forgot to thank in my speech at the restaurant… I think we’re still cool, she never seems to stay mad at me! And thanks, of course, to my darling mother, without whom much of that evening would have been impossible.

So hard to remember everyone… if I forgot you, I am sorry! You’ll just have to take it up on blind faith that you are in my heart!

$5,439.00. That’s what we brought in — nay, that’s what YOU brought in. This brings my fundraising total to $17,675 thus far. I am humbled. I am overwhelmed. I can’t believe that we’re still not done… and that there may be even more in the works than I had originally anticipated! The “Durso Fundraising Campaign” is hittin’ the road! A very close friend of the family, Mark Gross, has generously volunteered to help organize a fundraising evening at Caffe Crema in Bridlecrest. My Western friends have been asking how they can help; here’s the perfect opportunity! The dates are still to be confirmed, but it’ll be an evening for good friends to get together with some good coffee, some good live music, and all for a ‘good’ cause (I guess that characterization is arguable…).

I will warn everyone once again — I was unable to incorporate a charitable foundation in my name, thus negating my ability to hand out tax receipts for any donations. On top of that, the donations must be made to me personally; either a personal cheque, if you bank online, an e-mail money transfer is always a quick, easy, and safe way to send money (and one which also doesn’t require me to go into a bank… always a plus with my mobility issues), or a direct transfer through TD Bank to me (if this is the manner in which you would like to contribute, just get in touch with me and we can set something up).

More details will follow, and a formal event will be posted soon… keep your eyes open. I’ll be in Calgary before you know it, and while I cannot whirlwind like I used to, I’m pretty sure we’re in for a rocking good time nonetheless.

Again, to everyone and anyone that had anything to do with the success of the “Lemonade Stand Gala Dinner” — thank you, thank you, thank you!

Costa HowMuch?

Some of you may have seen vague, introspective status update hinting that I have been seeking treatment à la Zamboni for CCSVI (which I am still not even sure that I have). I do apologize for the melodrama of some of more emotive one-liners, but, well, bite me–it’s pretty dramatic!. To confirm any outstanding suspicion–yes, I am in fact heading to Costa Rica to see if venous angioplasty can provide me with some measure of relief, though precisely what impact it may have remains to be seen. Some go, have the operation done, and see miraculous results. Others have noticed small changes (greater tolerance to hot and humid conditions, relief from muscle spasms, better sensation in hands/feet, etc.). You need to understand that the smallest change in the condition of pwMS is monumental, whether good or bad. When bad, it is equivalent to dying another ‘small-death’; that is essentially what MS is – a series of ‘small-deaths’ that strip you of your ability to walk/see/piss normally/type/drive/learn/speak/swallow/breathe (albeit the last is in extreme cases), and we’re barely scratching the surface here. So far, I have experienced a dozen (or so) separate deaths. In 2007, I lost my ability to ambulate normally. Also, in 2007, my eyesight dropped to the weakest it can be for me to legally operate a motor vehicle. Also in 2007, my driver’s license was revoked. In 2008, I began taking the most toxic drug I’ve yet to ingest (Mitoxantrone – a chemotherapy drug used to treat leukemia). Also in 2008, I became 24-7-365 wheelchair-bound. But when good–it’s the greatest thing that’s ever happened to you – believe me! I will spare you further details of the misery that is my life–but despite toute la misère, I am still a happy guy!

But now, in a rare occurrence, I am asking everyone I know to help me get to San José, Costa Rica, to have the “Liberation Procedure” that you may have heard of. At a cost of $12,900 USD through a Canadian Medical Tourism Company. I ask my friends once a year to donate to the Canadian Multiple Sclerosis Society with great success – our team raised upwards of $12,000 last year alone, with my own personal fund-raising contributing  $2,200 to that. This year, however, I’m shifting the focus to me, myself, and I.

I am unable to hand out tax receipts, and these donations will have to be made to me personally – but I can assure you, I’m not asking y’all to bankroll my down payment for a condo, or a new car. I am instead asking you to bankroll a shot at life. A life that I know will be used for good – how could I possibly live it any other way when, for all intents-and-purposes, it was good that created it.

The formal fund-raising has yet to begin, though some donations have already been made. We will be hosting a variety of events – a spaghetti dinner in Mont-Tremblant, a ‘mini-gala’ at Casa Grecque in Pierrefonds, a silent auction at Casey’s (also in Mont-Tremblant), as well as some “Comedy for a Cause” nights (at least 1, maybe 2) at Bourbon Street West. I still don’t have dates/ticket prices, but I am putting together a Facebook group to keep people abreast of what’s going on/where/how much.

I fully anticipate that I will be an emotional wreck through much of this. While I might talk a good game, I detest being the center of attention – the fact that my development occurred in a Matriarchal household kinda rises to the surface and my ability to keep the ‘plug’ on the ‘faucet of emotion’ that resides within (thanks, ladies – you know who you are…) comes loose and goes all ‘BP-in-the-Gulf-of-Mexico’. And once loose – euh, we all saw the quagmire of monolithic proportions that turned into,,,

I will be posting more info in the coming days – if you don’t have a Facebook/Twitter account, subscribe to my blog and I shall endeavour to keep it as up to date as possible.

Until the next post…

-A.D.

Balloon Party!!

We live in a world where, if you choose to allow it, things you’re looking for kind of find you…

I don’t mean that in some kind of new-age take on the laws of attraction à la “The Secret“. My version applies exclusively to information I search for on the Internet, though I search for everything there. When I do that, I eventually begin transmitting my browsing history (through cookies) – as an example, take a look at the advertisements that show up on the right side of your Facebook page – if you don’t have a Facebook account, well… what are you using the Internet for? There’s only so much pornographic material that’s actually worth watching! Anyway, to the point; I have begun a more exhaustive search for CCSVI therapies (I know, I’ve already had people ask “wtf is wrong with me?” and why haven’t I laid out a plan to ‘git’er-done’…). It’s not that simple people! It’s an unproven therapy that has mixed results and imperfect surgical equipment. Balloon angioplasty is one thing – proven safe (arguably). I did read about a theory that in performing this procedure, the balloon, once inflated, may damage or rupture the “tiny vein valves”  causing further damage. Balloon angioplasty efficacy over the long-term for this type of procedure is, if nothing else, questionable. What appears to happen over time is a “re-narrowing” of the veins. That means the balloons need to be reinserted on some kind of regular basis. Simple enough, right? I mean, if I’m going to the hospital every 30-odd days for my monthly dose of toxic poison (I have begun referring to chemotherapy drugs exclusively by this moniker – I think it’s wonderfully descriptive and 100% accurate), why would it be so difficult to make sure that there’s enough ‘air in the balloons’. Hell, maybe they could even inflate the tires in my wheelchair at the same time.

The ‘imperfect surgical equipment’ I mentioned earlier was in reference to the arterial stents that are sometimes placed in cases where a severe narrowing is present. These are used often in arteries for people who have coronary operations. But an artery’s construct is very different then that of a vein. Arteries are kind of like steel pipe; they’re rigid and don’t flex as much as a vein, whose construct is more like a bendy-straw, comparatively. So what holds steel pipe open will surely hold a weak-little-bendy-straw open as well – but could also wind up causing the vein to rupture, or (worst-case-scenario), follow the blood flow straight to my heart, causing this really bad side-effect known as ‘death’ (though, eventually, the vein will grow around and lock the stent in place – a process called ‘endothelialization’ Say that 10 times fast…). So let’s review my options, shall we:

I can spend between $20,000 and $40,000 to have a trip to a hospital in Poland/Costa Rica/Mexico/The US where they may find:

(a) nothing.

(b) a narrowing requiring a ‘balloon party’ (angioplasty)

(c) a severe narrowing require stenting

So, therefore:

If (a) is true… anger, frustration, and an even greater feeling that I’ve been ripped-off may start to break through the ‘shiny-ball-of-happy’ that is me, possibly even transforming me into a ‘black-ball-of-bitter’

If (b) is true… I might see no change. Or I might see some symptomatic relief (greater tolerance to heat/humidity, clearer vision, etc.) – but the ‘balloon party’ (like any party you’re enjoying…) may end too soon, returning me to my previous state of disability (or invalidity, if you will – hard not to feel like an invalid  at times). This is important to conceptualize appropriately – imagine getting better for a few weeks, only to return from whence you came – that, to me, is worse than being sick. It’s a new kind of cruel torture that I have no interest in putting myself through. But it’s the probable outcome if I’m unable to find a doc in Canada to do the follow-up. Certain to transform me into a ‘black-ball-of-bitter’.

or

If (c) is true… well, the doc suggesting I use the device for a purpose other than what it was intended for may first have to deal with me utilizing it for a slightly different unintended purpose as I shove it straight up his…

So while the prospective way forward may be clear as day to all you fully-ambulatory, summer-lovin’ normies, I have to consider the impacts that the choice will have on my life. And my attitude. And the level of follow-up care available to me. And, and, and…

You know, it struck me yesterday – just because life’s not great doesn’t mean it isn’t good. While I’m growing tired of having to continually adjust my desires and expectations based on how my disease chooses to impact me day-to-day, month-to-month, year-to year, I’m ever-cognizant of the good things in my life. It’s the fuel that fills my tank… so keep the tank full, people!

-A.D.