29 days later...

Trip Start Jul 25, 2010
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Trip End Aug 03, 2010


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Flag of Canada  , Saskatchewan,
Sunday, August 22, 2010

 Hello all.  This entry is a little more introspective but thats the mood I'm in...so...
 It has become completely evident that the 'rush' of things to be on high alert for after the procedure, things like improved heat intolerance, improved walking, etc., has been relegated to simply monitoring myself for myself's sake. The shine is off the procedure, my jugulars seem to be  flowing freely as I'm still a little pink. So what happens from here is not only going to be very gradual, but also simply the consequence of me living my life. In other words, the treatment/procedure I had done is not 'active' anymore like it was almost a month ago; at the beginning when I was really noticing some profound improvements.  There are those things where I've not noticed much change at all. But, even though I don't have complete proof of anything, I'm doing much better than had I simply not gone... to me there have been changes. No one knows what's going on with themselves like someone with an incurable disease. And I know my body well from years of triathlon.  You're on high alert all the time checking and testing things... all I know is I can do more than before and that was the complete goal of doing this 'crazy, unscientific, untested' procedure. Yup gotta be placebo....

The answer for me has always been to live life. I'm not cured in that there are still issues in my spasticity, pain, fatigue, leg strength that will always be there until something else comes along. Until that happens, I will be living life with my deficits. My deficits are still very detrimental to living a 'normal' life. By that I mean a life that is not consumed by " where are we going?" "where's the bathroom?", "I can't walk that far", and "I can't carry that", and "I can only do so much", and "where am I goin to park?", blah blah blah. After dealing with those things for so long you adapt and it becomes part of your approach to life. It has to be unless you just want to get desperate every single day because you can't do everything. Some people actually do that. Very self defeating, but people still do it nevertheless. So how I (we) live my(our) life (lives) dealing with the stuff I (we) deal with and trying to live a full life...pursuing happiness. It fascinates me how differently people thrust into the same circumstances can have such widely varied approaches with how to move forward, or move backward, which is what many do.

I refuse to let this consume me. Now that is a very bold statement to make, and probably comes across very naive/arrogant to someone who has this disease and is struggling. I'm not there right now, and hope to never be. I can't 'beat' this like people who you see battling cancer. I admire the hell out of those folks (both of my parents!!) and actually envy them sometimes. For me It's something you CAN fight. You don't always win, but there is an enemy that shows up, not a sniper. And this sniper is gutless... I want my enemy to have the decency to try and kill me quick not the indecency of a slow attack!!  Show yourself!!  With this there's not, so the only way to fight is do all you can, have the procedure done. So since I can't beat it, I have to learn how to live with it. AND I have to learn, or attempt to, thrive with it. I'm far from good at this part.

So I have really been struggling with what to post that's for sure. I mean things simply aren't changing that much so I would just be taking up space expounding on "things are the same" every week or so. I get inspiration from rather strange sources, one being Theodore Roosevelt which I like to share whenever possible... so again...
  "“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly; who errs and comes short again and again; because there is not effort without error and shortcomings; but who does actually strive to do the deed; who knows the great enthusiasm, the great devotion, who spends himself in a worthy cause, who at the best knows in the end the triumph of high achievement and who at the worst, if he fails, at least fails while daring greatly. So that his place shall never be with those cold and timid souls who know neither victory nor defeat.”
His thoughts resonate because it seems that no matter where you are coming from, people in similar situations have thoughts that seem to meet at the same point. Those of you dealing with something know exactly what he's talking about. It really hit me that statement. It's very frustrating to watch the world continue to go by at a pace you just can't keep up with. But at the same time, I know the world shouldn't slow down for me. So it's very scary to watch everyone continue to do the things that you wish you could and not begrudge them at all. You definitely feel like you're going to be left behind. And then abandonment fears set in, and then it starts to affect your self esteem. It's a vicious circle that is extremely hard to figure out how to get out of.

Embarking on a journey to figure out how to capture some of the old me that made me such a 'pushy, focused, difficult' person before all of this. I can again, I just have to undergo radical transformations in what makes me happy and what establishes my self worth. I mean I'm still trying to be relevant and ultimately still employed and making a difference. Sounds like a good place to start because the happiest and most content people I know are also the most selfless. I ended up following others' expectations and it resulted in decent career success because I work and sell my labour... and yet I still search...To work without purpose I think is criminal... Truman had this to say: "I have found the best way to give advice to your children is to find out what they want and then advise them to do it". My parents told me to find something you love and find a way to get paid.  All without surrendering to the status quo.  Thanks, but no thanks, to one particular job site for solidifying the notion that leadership, passion, caring and ultimately outcomes are not the purpose...  it's all about process...

 I need to change something since nothing changes by itself.  I have MS, I don't need to let it define me. I need to take a step back and figure out what is going to define me going forward....But hope is an interesting construct...
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Comments

marg on

Mark,
I was invited by Kim to follow your journey, and have been following it with interest. I'm sure you're also aware there is a lot of negative publicity out there now - i'm wondering if you are still doing as well as you were at the time of this post. and honestly, i had to thank to for your comments on the planning and strategizing for any and all outings in our world - where is the bathroom, where can i park, is it going to be hot, will i be able to sit down... a couple of years after my diagnosis, the person i thought was my best friend simply said she didn't want to be around me anymore, because she was "tired" of always having to accommodate me. since then, i try to do all this planning in my head, often leading to me cancelling, or even refusing outings. i felt so much less alone when i read your words about the same issues. thank you for that. i hope this finds you well, and continuing to improve.

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