Wednesday, September 2, 2015

Thoughts Formed While Staring At The Ceiling

I’m baaaaack! Due to circumstances beyond my control, it’s been quite a while since I posted anything to this blog. My long absence from the blogosphere (is there an uglier word in the English language?) was not due to alien abduction, time travel, or simple lack of interest, but rather because I was, in a word, sick. Sicker than normal, that is. So sick that I could barely get out of bed for about six weeks, feeling, as they say in the hallowed halls of medicine, horrendously yucky.

Turns out that my case of the horrendous yuckies was caused not so much by my mysterious and ever progressing neurologic crap, but rather an obstinate sinus infection and – mostly – my completely messed up endocrine system, which decided to go utterly out of whack. Take it from me; having an utterly out of whack endocrine system is definitely not more fun than a barrel of monkeys, or even one monkey with or without a barrel. After two rounds of antibiotics and much tinkering with my various endocrine meds, I’m finally feeling halfway human. Since there are strong suspicions that I may only be half human anyway, things are definitely looking up.

Speaking of looking up, my six weeks spent in bed doing my best impersonation of an area rug gave me plenty of time to do just that, look up and study the intricacies of the ceiling over my bed. Since that pastime got old pretty fast, instead I couldn’t help but start peering deep within my own brainpan, an activity that comes dangerously easy to me anyway, given my lifelong proclivity for introspection. While there are plenty of interesting nooks and crannies inside that creaky old noggin of mine, there are also all kinds of surplus flotsam and jetsam in there as well, along with some scary beasties that are better left undisturbed lest they wrap their tentacles around your naughty bits and begin taunting you with really bad impersonations of Ernest Borgnine in “Marty” – a wonderful movie which if you haven’t seen already I highly recommend you watch right this second (click here).

Also found stuffed in the neglected dusty and cobwebed steamer trunks of my mind were memories, lots and lots of memories of people, places, and things, some of which hadn’t seen the light of day in decades. It’s amazing how many seemingly trivial moments remain captured in crystal clarity in our heads long, long after they occurred. Some were a treat to revisit, others not so much. Nevertheless, all of this mental poking, prodding, and reflecting done during my enforced period of respite resulted in some observations on life with and without chronic illness, some of which I thought I’d share in an attempt to make my time spent infirm not a complete waste. Some of the these may be trite and/or unoriginal, others a bit more significant, but I think all are true. Do with them what you will, but please keep your Ernest Borgnine impersonations to yourself…

♦ Time flies even when you’re not having fun. I’ve been diagnosed with “atypical” MS for over 12 years, and have been dealing with various troubling symptoms for longer than that, during which time I’ve lost the use of the entire right side of my body and an increasing amount of my left, and still it feels like all those years went by in the blink of an eye. Time is every person’s most precious possession, and each passing moment diminishes our allotment of this priceless endowment, never to be recovered. Time spent wallowing and worried over things inconsequential is time indeed wasted, and in the grand scheme of things almost all circumstances and situations except the absolutely most dire turn out to be inconsequential. With few exceptions, lost loves give way to new romances, lost jobs to fresh opportunities, lost monies to refilled coffers. As long as a person is of sound mind and body the power to reshape their destiny is entirely theirs to command. Once recognized, past mistakes and self-destructive patterns can serve as illuminating roadmaps to a more fulfilling future. Not that the losses shouldn’t be felt, but letting those hurts linger and poison future moments, moments filled with endless possibility, amounts to time spent in a prison of one’s own making. Regrettably, a lesson I learned far too late in life. Another lesson I learned far too late in life is that trying to put your underpants on over your head is but one more terrible waste of time. Go figure.

♦ Judging people by their outward appearance is about as foolhardy as it gets, unless they are blood spattered and brandishing weapons. As I’ve previously recounted on these pages, at one point in my life I found myself an unwilling resident of the state of Florida, very much a stranger in a strange land. It seems I shared little by way of aesthetic sensibilities with most of the other residents of The Sunshine State, and for quite some time I felt extremely isolated. As I got to know people, though, most of whom looked and thought very differently than the people I was used to socializing with in New York or Boston, I came to realize that many of them were full of delightful surprises. One very burly and proudly blue-collar man, who at first glance would seem to be the antithesis of the artsy types I hung out with up north, turned out to be one of the most interesting and entertaining friends I’ve ever known. One thing I realized we shared early on was a taste for booze and bars, and on one of our first nights out on the town together, after downing a few, he confounded me by suddenly spouting by rote memory verse after verse of Rudyard Kipling poetry, recited with a heartfelt vigor that left me dazzled. “If you can make one heap of all your winnings, and risk it on one turn of pitch and toss, and lose and start again at your beginnings, and never breathe a word about your loss…”. During the rest of my Florida years we would have quite a few inebriated adventures together, and through them all I’m sure I learned more from him than him from me. I haven’t seen or spoken to my friend in at least 16 years. Denny, if you’re out there, thanks for the surprises and all the good times.

♦ On that note, it’s vitally important to let the people who brighten your world know just how much they mean to you. No need to get all gushy and maudlin, but acknowledging the good people now will save you regret later on. I had the good fortune of working closely with two of the most brilliant people I ever met, at a major audio and video production studio here in New York City. When I first received my MS diagnosis they were both visibly upset and tried to express their concern and sympathy as best they could, genuinely chagrined at the bad break I’d received. Well, 12 years later I’m still here and they’ve both since passed away, one with shocking suddenness and the other after a long illness. I never really expressed to either one how special I thought they were, at least not directly. We cry at funerals not for the departed but for ourselves, for everything left unsaid and for the part of us the lost take with them. I have an awful lot of phone calls I need to make.

♦ While we are still on the subject of people, although it is foolish to judge folks by their outward appearance, judging them by the company they keep can save you a whole lot of trouble. Birds of a feather, as they say. I once had a long-term relationship with a woman who, on paper, seemed almost perfect. She was extremely easy on the eyes, had an interesting, even noble profession, was possessed of a sharp mind and a keen sense of humor, owned two great dogs (a big plus in my book), and had wonderful parents. The only thing that bothered me about her from the outset was her friends. Though this may sound impolite, they all made my skin crawl and seemed to me on the whole to be a thoroughly distasteful bunch. The passage of time would confirm my instincts about pretty much the entire crew, and despite any initial illusions otherwise, my ex turned out to be a great fit among them. Of course, in retrospect, early on I chose to willfully ignore copious signs of this woman’s toxicity, for I was truly a fool for beauty. Unless extraordinarily motivated, people generally stay true to their nature and if you think that you are somehow going to change them you’re cruisin’ for a bruisin’… Years later I married a woman with a kind heart and genuinely good soul, beautiful both inside and out. I suppose the universe taught me a lesson I desperately needed to learn, and boy, I sure am glad I learned it.

♦ Chance plays a tremendous role in shaping the contours of a life, but there are key moments when decisions made or not made, or actions taken or not taken, can change the whole ballgame. How important it is to recognize those moments and in doing so bend the fates to your favor. As a young man I suffered greatly from HUMA (Head Up My Ass) syndrome, and lived my life with all the conviction of a fart in a windstorm, mindlessly rather than mindfully. Though I harbored grand dreams of fame and fortune, I spent far too much time dreaming rather than doing. I did manage to eventually find success in what many people consider a “glamour” industry – video and television production – but I always had gnawing within me the feeling that I was meant for other things. When my illness forced me to “retire” and eventually start this blog, I discovered a much truer me, a me that had been MIA for decades. Fear, I now realize, played a tremendously negative role in the direction of my life, fear of both success and failure, playing itself out in too many ways to count. Lying sick in bed this last month and a half I sifted through all of the chances missed and all of the roads not taken, almost all due to lapses in confidence, neurotic apprehensions, or sometimes simply the weight of inertia, and I was overwhelmed by the sheer magnitude of all of the collected “what if’s”, a latticework of paths left unexplored. Who knows if any of them any might have led to a place without MS? In a weird twist of fate my illness has resulted in some of my dreams finding realization, but geez, the price has been steep. I suppose such things don’t come cheap, though. Unless, of course, you’re a Kardashian.

Okay, with that I’ll leap off of my soapbox (as if I could even get on a soapbox, or leap). Thanks to all of you for taking the time to read Wheelchair Kamikaze, and for commenting, sending notes, and breathing life into this thing. You’ve given method to the madness of my getting sick, and for that I am eternally grateful. When they find a cure for this whole MS thing you’re all invited over to my place for a shindig that will leave my neighbors pissed off for years…

57 comments:

  1. Welcome back! Thanks for being out there. As I roll along with my own various MS symptoms and live life, I took my son to college (the son who wasn't supposed to see, hear, walk, talk or live). So I thought I would be "retiring" from my full time job as care-giver. Alas, my cousin was diagnosed with advanced breast cancer and I'm back on the appointment treadmill holding her hand and interpreting medical jargon. I really could use a rest. Maybe next year...

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    1. Hey Barb, I guess there's no rest for the weary, as they say. Thanks for the welcome back, and here's hoping things lighten up on your end…

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  2. Well, you finally got your ass out of bed - it's about time!!! ;) Seriously, it's a HUGE (not Trump style, though!) relief to hear from you!

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    1. Actually, I got out of bed because Donald Trump came over to my house and called me a loser. So I got out of bed to try to pull his hair, and guess what, it's real! I know because it screamed when I touched it…

      Don't mean to denigrate The Donald, I've been quite amused by the show he's putting on and the establishment's reaction to it…

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  3. marc have you considered HSCT?

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    1. Unfortunately, I don't have any enhancing lesions, and my disease is quite progressed. HSCT has been shown to work best on people earlier in their disease, who still have enhancing lesions and are experiencing relapses. I was progressive from the start, so it's doubtful that ever could've helped me, I know there are folks on the Internet who claim otherwise, but the preponderance of evidence says that HSCT just doesn't do much good for people with higher EDSS scores who don't have active inflammatory disease. That said, if I did have enhancing lesions and/or was suffering relapses I would be scratching their way to the front of the HSCT list. I don't believe it's a cure for RRMS folks, but it sure looks like it can put the great majority of them into complete remission for at least 5-7 years.

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  4. Marc :) it is geat to have you back! Thank you for sharing your experience of 6 weeks spent in bed staring at the ceiling... Similarly, I have been going through a period of "imprisonment" in my house due to this extreme heat+humidity which make me relapse. I have been staring at the ceiling a lot... reflecting on life experiences makes time go by easier, especially when I realize how my life has been filled with great people and great times...

    I am so glad you are back!

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    1. Hi Dragana, thanks for the welcome back. Yes, it's good to have past adventures to remember. Back before I got sick I got into my share of shenanigans, luckily. Had I known I was going to get sick, I would've gotten into even more… Just goes to show, you have to live for today, as nobody knows what tomorrow may bring. And that goes for the sick and healthy alike…

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  5. You inspire those of us with MS who just get the "downs" and don't feel the worth in climbing back up. There is worth, though, in continuing the fight and my life, even if MS has taken my carefree days of travel, easy movement, easy routines, etc. I think I'll hang around. My cat Izzie would miss me.
    BethB from Indiana

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    1. Well, the way I see it we really don't have much choice other than to try to live life as well as we can. Believe me, there are days that the struggle just doesn't seem worth it, and how I do yearn for those carefree days that I didn't realize were so carefree. Sometimes I think the only thing that gets me out of bed some days is that I'm a spiteful son of a bitch who refuses to give the disease the satisfaction of taking me down. And hey, if that's what it takes, then here's to being a spiteful son of a bitch!

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  6. Nice head dump... Thanks Marc! Good to hear you're on track for a Fall Revival of sorts...

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    1. Thanks, Tom. Hopefully my recent uptick in health will continue, or at least not slip back. Sure the neurologic stuff will just be progressing, but as long as the other stuff stays relatively well behaved…

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  7. Glad you are feeling better and back with your wonderful posts! You were missed!

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    1. Thanks, and I'm glad you enjoyed my post. Hopefully, many more to come…

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  8. I'm glad you are back! I spent all of July sitting with my wife in the hospital and I can't tell you counting how many ceiling squares, windows, and what nots within my field of vision.
    I hope you continue on feeling better.
    Tom T

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    1. Hi Tom, hope everything is going well with your wife, please send my regards. And don't forget to take care of yourself, also…

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  9. Thank you my friend for such words of wisdom. Sorry to hear of your recent challenges, but oh so glad you are back.

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    1. Hi Betty, thanks for contributing. I know they say that challenges build character, but really, I think I'm okay with my current amount of character. It's nice to know that so many out there give a hoot…

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  10. Just when I resign myself to my own private pity party, you come along with your self-deprecating humor and I laugh myself right out of it. Welcome back, my friend!

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    1. Glad I could provide a few chuckles. One of the keys to dealing with all of this is to try to find a sense of the absurd. What could be more absurd than getting MS? A very nasty practical joke pulled by the cosmos, I sure hope the universal pranksters are getting a good kick out of it…

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  11. And on that note.... Thanks for brightening our world with your humor & wise words. You're inspiring us all to keep up the good fight. Glad you're back and feeling better.

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    1. Thank you, Suzanne. You guys inspire me, so I guess this whole thing is mutually beneficial. One hand washes the other, and both hands wash the face. Hey, wait a minute, I can't really use one of my hands, so I guess I'll have to shelve that cliché. Damn, I do so much love my clichés…

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  12. Hi Marc :)

    I'm sure I speak for all of us when I say we missed you dearly. Just yesterday I was really thinking about you, as I often do, and was hoping that I would hear more from you very soon and that nothing terrible had happened to you. And yes, I think about you and your words often. they really put things in perspective on life in general. I take your words with me wherever I go and appreciate the wisdom they have.

    And on that note...Thanks for everything. I look forward to reading your future blog posts as they truly are bright spot in my world.

    Sincerely,
    David Hilliard

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    1. Your words are very much appreciated, David. I'm still flabbergasted that this blog has reached so many people, I honestly never expected it to be read by more than maybe a dozen friends and family. I'm so glad I could be of help, even if just in a small way, to so many…

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  13. I'm so happy you up to blogging again.

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  14. I'm happy you're back, too...Your writing always makes me think...and as for florida, I understand your feelings completely and I live here...

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    1. My condolences on your living in Florida. Actually, it's not all bad. It is nice to be able to go for a swim in December…

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  15. Hey marc, welcome back to the land of the living… Time is a human contrivance like past, present and future. It is a human ability to track the moments that pass you by. Very un-living-in-the-moment. If you ask me. Which I know you didn’t. Sorry.

    One of my favorite writings on judging comes from As Bill Sees It, Bill Wilson, pg. 74, entitled Blind Trust.

    "Most surely, there can be no trust where there is no love, nor can be real love where distrust holds malign sway.

    "But does trust require that we be blind to other people's motives or, indeed, to our own? Not at all; this would be folly. Most certainly, we should assess the capacity for harm as well as the capability for good in every person that we would trust. Such a private inventory can reveal the degree of confidence we should extend in any given situation.

    "However, this inventory needs to be taken in a spirit of
    understanding and love. Nothing can so much bias our judgment as the negative emotions of suspicion, jealousy, or anger.

    "Having vested our confidence in another person, we ought to let him know of our full support. Because of this, more often than not he will respond magnificently, and far beyond our first expectations."

    LETTER, 1966

    But I also like what my friend Bean says about “reading someone’s advertising.”

    Just stopping by to say hey. Love your blog, New York City, Zen Buddhism and beautiful girls (not the David Lee Roth remake, although I did own that EP on cassette.)

    JE

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    1. Terrific quote, thank you for adding it to this blog. Indeed, we must endeavor to "read someone's advertising" as best we can, and that goes for our own advertising as well. One must be careful, though, as there are some who are much practiced in the arts of deception, so practiced, in fact, that they even deceive themselves. Taking an honest inventory of one's own emotional and personal pluses and minuses is also vital, perhaps even more so than taking stock of everybody else's. I don't think a person can truly know others until they have a core understanding of themselves. And so many people seem to insist on living in a state of self-delusion.

      But, whatever gets you through the night, I suppose… As long as you do no harm to others…

      And hey, though I was never a fan, there are a lot worse things than David Lee Roth. Though I wouldn't he say qualifies as a guilty pleasure, there were times he made me smile…

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  16. Hi Marc,
    Sinus infections are miserable and I hate antibiotics. Research has shown that that the lack of the protective bacteria lactobacillus sakei in the sinuses allows the bad bacteria to thrive. I have successfully cured sinusitis by inserting lactobacillus sake into my nostrils daily for several weeks. I order Bactoferm F-RM-52 (which contains sakei) from The Sausage Maker, prepare as per instructions, dip and insert 3X per nostril. The only Side Effect is the really cool catalog they send me in the mail.

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    1. Thanks so much for the tip. I've been using a spray called Xlear that contains saline, xylitol, and grapefruit seed extract. It's available on Amazon, and does seem to help keep my sinuses in relatively good shape. I will definitely check out the Lactobacillus. Thanks again…

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  17. Marc I'm glad you're back and happy to see that you're in good spirits. It is so true that people who pity us for our disease end up sicker and even dying. Like the saying says there is always somebody worse off. I work everyday to stay positive and it helps...

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    1. Hi Donna, yes, staying positive does require work, and I think some people find that a difficult concept to grasp. Some folks are just naturally positive; I'm not one of them. Left to my druthers, I might easily slip into a vortex of darkness, as I used to do quite regularly in my healthy days. Now that I have honest-to-goodness tangible reasons to veer towards the darkness, I must make an effort to steer clear. Strange, the lessons we wind up learning…

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  18. Welcome Back you old codger. You scared the shit out of me. Don't do that ever again.

    Seriously I missed you very much. I'll send you an email to try and catch up.

    Charlie

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    1. Hey, Charlie, thanks for chiming in, I was just thinking about you. Hope you had a wonderful summer up at the cottage, and that you spent many an idle hour soaking up the scenery in your pontoon boat. Any major construction projects this summer? Looking forward to your email…

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  19. Una soluzione al miglioramento-eliminazione della fatica cronica e,quindi maggior energia mattutina, anche per miglior qualità del sonno e ritorno a sognare con ricordo del sogni al risveglio e,eliminazione di eventuale anemia cronica, oltre al atri miglioramenti, e quindi una SM più accettabile, te lo ripeto,la puoi ottenere, bevendo la mia bevanda preferita, rivelatasi una panacea a largo spettro su tantissime patologie, per tre volte al giorno, 1 h prima dei pasti principali giornalieri, in dose di micro polvere, osso seppia, o da gusci di crostacei-molluschi vari,telline comprese o, da coralli marini o perle di ostriche di 3-4 grammi, tutti di mare e pescati ! , mai di allevamento !, polvere sciolta in succhi di limoni, gialli,maturi e freschi. In sinergia, separatamente, 30-40 g di semi LINO ammollati con ricambi vari di acqua a 30° C, per circa 6-12 h o appena germogliati, Portulaca o erba porcellana, in abbondanza in insalata verde e 0,6-1,0 grammi di polvere di Ginkgo Biloba, giallo oro e mai verde, con utilizzo di olio di oliva OEVO, giallo oro denso vivo al frantoio e mai verde o giallo paglierino fluido quasi come l'acqua, olio da olive mature, con polpa mesocarpo,viola vivo denso fino al nòcciolo ! . AUGURI

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  20. Translation, Google, from Italian.

    ruggierifpSeptember 3, 2015 at 1:05 PM
    A solution to the improvement-elimination chronic fatigue and thus more energy in the morning, also for better sleep and to dream return with memories of dreams upon awakening and eventual elimination of chronic anemia, as well as improvements to the atria, and then a more SM acceptable, I repeat, it can get, drinking my favorite drink, which proved a panacea broad spectrum of many diseases, three times a day 1 hour before meals daily dose of micro dust, cuttlefish bone, or from crustacean shells shellfish-many, including cockles, or from marine corals or oyster pearls of 3-4 grams, all of the sea and caught! , Never farmed!, Powder dissolved in lemon juice, yellow, ripe and fresh. Together, separately, 30-40 g of seeds LINO soaked with various parts of water at 30 ° C, for about 6-12 have just sprouted, or purslane herb china, abundant in green salad and 0.6-1.0 grams of powder of Ginkgo Biloba, ever green and yellow gold, with the use of olive oil EVOO, golden yellow thick live to the mill and ever green or pale yellow fluid almost like water, oil from ripe olives, with pulp mesocarp, purple I live up to the kernel of dense! . BEST WISHES

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    1. Thank you, sounds like an interesting formulation. Though the translation is a little bit clunky, I will try my best to work out the ingredients, and give it a whirl. I will run it all past the naturopathic physician I consult with, just to make sure it doesn't interact with any of my other medicines and supplements. I urge everybody to make sure they do something similar whenever adding any new ingredients to your medicinal cocktails. You never know where bad interactions are lurking…

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  21. Just echoing the many other posts - SO happy to have you back and thanks for another thought provoking post!

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    1. Thank you, Jeff. Your kind words are much appreciated.

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    1. Yeah, I'm still here. I'm hard to get rid of, like that last guest at a dinner party…

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  23. Welcome back. Your reflections offer much insight for those in our world who are not physically trapped, but mentally so. Just reading helps to remind us that many of our roadblocks are self inflicted, and is a health reminder not to add them to whatever physical ones we may already have. Thanks for sharing!

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    1. Count me among those who spent way too much time trapped by psychological walls which kept me from living as well as I otherwise might have. The source of much frustration when I look back, but, there's nothing to do but learn how to avoid the same traps here in the present. Sometimes it simply comes down to taking things one second at a time…

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    2. Yep, Marc - One second at a time. You nailed that one right on the head.
      Thank God we have all these "cyber buddies" to identify with each other.
      Otherwise I think I could lose what's left of my mind. Since the body already left.

      Glad you're feeling better.
      Dee/OH

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  24. So glad to hear you're back. I must say... Every time I think I might be a decent MS blogger, I read your posts and am in awe of your ability to capture the essence of this illness with such brilliance. Thank you for inspiring all of us.

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  25. May I suggest reading the bible. It's fascinating. If you read it with the intent on "finding God" or "seeking" Him. You will find Him. If not, it's still a very interesting book. Once you find Him, meet Him, however you want to phrase it, it will change your life. Not in a creepy, Westboro Baptist Church way, but in a way that will leave you in awe, in wonder, and changed for the better. I just found your blog and I love it! I'll be keeping up. My connection to our creator changes everything about MS for me. How I view it, handle it, use it, etc. I just like to share where I found water to other thirsty MS'ers. That's all. I'm not crazy, I promise. : )

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  26. You, my friend, are an inspiration, certainly to those stricken with MS, but also to those simply stuck in a life that's rarely easy to understand. You're very good I think, and tunneling right down to the heart of things, sort of like a human distiller of human-ness.

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  27. I am so glad to see you blogging again!

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  28. Great to see your blog again. Wish to read more and more.

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