Saturday, August 21, 2010

Life and the changing attitude of this blog

I created this blog about 14 months ago to track my progress through the CCSVI procedure, sometimes called the liberation procedure. 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, I've been given my gold star at my one year check up, and my jugulars are flowing freely as they are held wide open by stents. 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 at the beginning when I was really noticing some profound improvements. I mean I put my cane away, how huge is that? I still don't need it by the way. And there are those things where I've not noticed much change at all. But, even though I don't have proof of anything, I'm doing much better than had I simply just continued to take the complete shite MS drugs. To me anyway, it's a fact. No one knows what's going on with themselves like someone with an incurable disease. You're on high alert all the time to make sure medical intervention is not necessary and things like that. so call it psychosomatic, call it actual healing, I don't give a shit which, all I know is I can do so much more than before and that was the ENTIRE goal of doing this untested procedure. So it's time to turn the page.

But turn it to what? The answer is living life. I'm not cured in that there are still issues in my leg strength that will always be there until something like stem cell based repair comes along. Until that/if that ever 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 the hell is the bathroom?", and "I can't walk that far", and "I can't carry that", and "I can only do so much", and "I can't drink any liquids past 8:00pm", and the list goes on. I'm not whining. 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. But I still need to write. It's my personal, cathartic activity that allows me to organize and capture 'where I'm at' and record it to look back upon as fleeting thoughts that come and go need to be captured. So how I live my life dealing with the stuff I deal with and pursuing happiness is what I must change the nature of this blog too. 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 can't be one of those guys as many of you who read this know about me. I refuse to let this consume me. Now that is a very bold statement to make, and probably comes across very naive/pompous to someone who has this disease who is in a nursing home. I'm not there right now, and hope to never be, so here is where I am and that is part of my attitude. I can't 'beat' this like people who you see battling cancer. I admire the hell out of those folks and actually envy them sometimes. It's something you CAN fight. You don't always win, but there is an endgame. With this there's not, so the only way to fight is do all you can, like 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. Reading works like "Mans' Search for Meaning" by Victor Frankl and works like that are what makes me think it's possible for people to thrive under any conditions. And when I mean thrive, I simply mean have peace of mind. By the way, if you haven't read that oh so short book, you are doing yourself a disservice. It's not about health issues and is, I think anyway, one of the most profound modern texts. I read it in a day; it's that short, so read it!

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 blog space expounding on "things are the same" every week or so. I got some inspiration from a very strange source. A man named Christopher Hitchens. Those of you who read current events, know of Hitch. He is a firebrand essayist that can only be described as a devout atheist. He has an acerbic tongue and generally just pisses people off with his writings, but he always makes you think. He fancies himself a modern day Hemingway for sure with his ever present lit cigarette and confrontational, unapologetic attitude. He has advanced, and probably, terminal cancer. He is obviously spending time writing about that. His thoughts hit me hard 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. He is attempting to describe his "deportation" to the land of the sick/gravely sick. 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, you know the world shouldn't slow down to your pace either. So it's very scary to watch your loved ones continue to do the things that you wish you could and not begrudge it at all. It is so scary as you definitely feel like you're going to be left behind. And then you're 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.

I mean after all we are all obviously at least half 'physical' and it's also obviously how we present ourselves to the world. You didn't go after your spouse upon first laying eyes upon her in the context of "I bet she has a great personality". You went after her physical body and then learned to love her personality, or left because of her personality. So the physical gets you in the door and then personality takes over. It's just the way it is. I mean after all, aren't we all the cum sum of our accomplishments and our decisions? We simply can't separate the two and just be physical or just be mental/spiritual/emotional now can we? Think about it. My disabled idol, Christopher Reeve, still presented himself to the world as a quadriplegic. To me, that's when he became Superman. With his positive attitude while sitting in that chair able to only move his eyes. So that's what I mean when I say that people in the same circumstances handle it so differently. I mean there are many more bitter people who are quads than Chris Reeveses. But there are also plenty of people like him. My buddy Mitch ( has a great attitude. He's also one of my idols whether he knows it or not just by being Mitch.

So how do they do it? I aim to figure it out. It probably won't work quite that way. I'll probably just get there by going on the journey. It's so difficult. I NEED my wife to desire me even though I may become, in my eyes anyway, undesirable. How do I keep myself "relevant"? How do I not succumb to just getting by and making it everyday when it's so hard to do anything else? I just have to and this blog will become my sounding board as I try to figure it out. I mean that's what we are ALL trying to figure out, but it's more important to me now than it was when I had my health. I probably needed to pay more attention, but things like career and stuff were the distractions. I can't do that now. I mean I'm living LIFE, not living CAREER, so life comes first. I'm done cancelling physical therapy appointments because of work. I mean if there's a major deadline and I have to push one out, then so be it, but I was bad with a capital B with stuff like that to this point. Just regular work stuff came first and I was always cancelling, and in some cases not even getting started on, things I need to be doing to stay healthy in mind and body. Then I realized that the reason that it was always me doing the cancelling was because others' weren't. I'm not carrying all the load anymore. I guess I'm becoming more selfish with my time, but I sacrificed my own desires for long enough; it's someone elses' turn.

I really look forward to pontificating on here and going on a journey to figure out how to capture some of the old Lew optimism that made me such a content person before all of this. I really did have it dicked and I can again, I just have to undergo radical transformations in to what makes me happy and what establishes my self worth. I mean I'm still raising a teenager and I have a relevant job there. So maybe what it's going to take is to turn my eyeballs 180 degrees and look outward more and help people to the best of my limited ability. Sounds like a good place to start because the happiest and most content people I know are also the most selfless. I also love quotes and want to end this ramble with one about raising children. I'm trying to figure out how to make my daughter feel very convicted about following HER dreams. I ended up following others' expectations and it resulted in career success because of my work ethic, but I never enjoyed it, and still don't for that matter. I want her to be her own wheel, not just a cog in one. So our old president Harry 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". I was advised to do what the conventional wisdom was at the time with no regard to what I wanted, so we'll see how that works out for my kid!

So it's time to turn the page somewhat. I am so utterly sick and fucking tired of constantly thinking about 'how I feel' and monitoring everything that goes on with my body that I could scream. So in order to get out of that feedback loop, I need to change something since nothing changes by itself. So writing in a different vane will hopefully get out of my MS obsession. 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. Just being "the sick guy" didn't really work out that damn well.


  1. Lew, what a nice thing to say about me! I like your attitude. I think you're on the right track. We are not defined only by our disability, unless we let that happen.


  2. Victor Frankl's Man's Search for Meaning has gotten me through many a dark spot, and I reach for that book whenever I land there again. Sometimes, though,I wonder if there is a difference between living for five years in a concentration camp and living a lifetime with a chronic degenerative disease like MS for which there is currently no cure. I haven't reached a conclusion about that, only that both are hard. Certainly when he was interned he had no way of knowing it would ever end. But it did. I wonder if a Frankl 20 or 30 years in would have written a different book. I don't know. Just asking. Thank you for your honesty. Keep reminding us to search for meaning. I'll be listening.

  3. lew, i had hoped that you would just keep improving and who knows what any of our future holds. i was liberated i have ppms and had good and bad results. the good is fadeing. another mind game to deal with. we all have the days where we are truly grateful for what we do have like a home, food etc. we all know we can always find those that are worse off. but the bottom line is this is our pain, grief, and disability. we are the one that has to deal with the everyday struggle and fear. i've been doing this 20 yrs. lost a lot in my life and seems it's not ready to let up anytime soon. but then we get that glimmer of hope or someone says something that helps you carry on. up down up down. i appreciate you letting us know what is going on and being so very honest about it. hopefully they will get this miserable life ruining disease figured out for all of us. keep us informed. hope you get an unexpected and great improvement.

  4. WoW !!!
    "I was advised to do what the conventional wisdom was at the time with no regard to what I wanted," which disconnected you from yourself:
    "I am so utterly sick and fucking tired of constantly thinking about 'how I feel' and monitoring everything that goes on with my body that I could scream." Proff that you ar whole again.
    " I need to take a step back and figure out what is going to define me going forward."
    How about a step forward instead. You have been "fallen" long enough !!!
    Nobody goes anywhere, we are all on planet earth.
    It seems to me that this is a proof of the liberation procedure: clear thinking.
    As for your daugther, let her mother do her job since no woman ever made a man out of a boy and no man ever made a woman out of a girl...

  5. "...I'm not cured in that there are still issues in my leg strength that will always be there until SOMETHING LIKE STEM CELL based repair comes along." Do not programm yourself!
    Read Herbert Shelton : Integral Fasting. That method has the ability to trigger stem cells repairs. I have experienced it often times. It has to be done right, outside medical "ignorance".

  6. Don't ever stop writing. You do magic with words.

  7. Lew, thanks for sharing your personal viewpoint.

    I read a book called "The road less travelled" many years ago. I barely remember it but sometimes feel reminded why I picked it up in the first place.

    No-one can really truly knows what it's like to be you or go through your daily grind.

    There's nothing wrong with taking a step back, take as much you time as you need.

    Your writing has already helped others & the same pages will help people in years to come.

    You sound ready to re-define yourself and giving it a lot of thought. Many of us are thankful to you but now it's time to show yourself some gratitude and follow the path you are leaning towards.

  8. Loobie,
    one thing I can always count on is your truthfulness and bluntness. I dig it and admire your honesy and realism.
    thanks Bro

    Report: In What Sense Do You Mean Immortality?
    September 5th, 2010 • 8:43 AM
    By: Cody Jones, Sky Shields, and Michelle Lerner
    For,the courage and temperance of other men, if you will consider them, are really a contradiction .
    How is that, Socrates?
    Well, he said, you are aware that death is regarded by men in general as a great evil.
    That is true, he said.
    And do not courageous men endure death because they are afraid of yet greater evils?
    That is true.
    Then all but the philosophers are courageous only from fear, and because they are afraid; and yet that a man should be courageous from fear, and because he is a coward, is surely a strange thing.
    Very true.
    And are not the temperate exactly in the same case? They are temperate because they are intemperate-which may seem to be a contradiction, but is nevertheless the sort of thing which happens with this foolish temperance. For there are pleasures which they must have, and are afraid of losing; and therefore they abstain from one class of pleasures because they are overcome by another: and whereas intemperance is defined as "being under the dominion of pleasure," they overcome only because they are overcome by pleasure. And that is what I mean by saying that they are temperate through intemperance.
    That appears to be true.
    Yet the exchange of one fear or pleasure or pain for another fear or pleasure or pain, which are measured like coins, the greater with the less, is not the exchange of virtue. O my dear Simmias, is there not one true coin for which all things ought to exchange?-and that is wisdom; and only in exchange for this, and in company with this, is anything truly bought or sold, whether courage or temperance or justice. And is not all true virtue the companion of wisdom, no matter what fears or pleasures or other similar goods or evils may or may not attend her? But the virtue which is made up of these goods, when they are severed from wisdom and exchanged with one another, is a shadow of virtue only, nor is there any freedom or health or truth in her; but in the true exchange there is a purging away of all these things, and temperance, and justice, and courage, and wisdom herself are a purgation of them. And I conceive that the founders of the mysteries had a real meaning and were not mere triflers when they intimated in a figure long ago that he who passes unsanctified and uninitiated into the world below will live in a slough, but that he who arrives there after initiation and purification will dwell with the gods. For "many," as they say in the mysteries, "are the thyrsus bearers, but few are the mystics,"-meaning, as I interpret the words, the true philosophers. In the number of whom I have been seeking, according to my ability, to find a place during my whole life; whether I have sought in a right way or not, and whether I have succeeded or not, I shall truly know in a little while, if God will, when I myself arrive in the other world: that is my belief. And now, Simmias and Cebes, I have answered those who charge me with not grieving or repining at parting from you and my masters in this world; and I am right in not repining, for I believe that I shall find other masters and friends who are as good in the world below. But all men cannot believe this, and I shall be glad if my words have any more success with you than with the judges of the Athenians.

  10. Lew,

    Just a note to say Hi and that I'm hoping your enjoying life at the moment. You surely deserve it.

    Also that I miss you in the forums, but understand that you needed to "fly from the nest" and find your own way.

    Best to you,

    Lora (Ruthless67)


I've figured out how to get everyone to be able to post on here.