Thursday, April 27, 2017

At Long Last, the Answers I've Been Seeking! (Or, Only His Hairdresser Knows for Sure)

Ever since my diagnosis almost 14 years ago, I’ve been on a single-minded quest seeking not only the cure for the scourge that afflicts me but also answers the intangibles of my disease – the how’s, why’s, and where’s of my predicament. More precisely, just how did I get sick, why did I amongst the masses get stricken with this dreaded creeping paralysis, and just where might I have picked up this curse. Inscrutable questions, yes, and queries a wiser soul would probably have best left undisturbed, but despite my knowing better I have never been able to stop my mind from pondering these imponderables.

I can now breathlessly report, dear readers, that my seemingly quixotic mission to unearth truths that I feared might very well be beyond comprehension has finally been rewarded, the answers now mine – and from the unlikeliest of sources. Before I reveal these precious gems of knowledge, these nuggets of illumination, please allow me some exposition, without which I’m not sure the full magnitude of my discoveries can be appreciated.

I’ve always had a knack for attracting eccentrics into my life, a strange type of gravity that has kept my existence full of oddballs, characters, and cranks. They're almost always of the benign variety, unconventional creatures whose quirks have much more often been a source of delight than offense, whose idiosyncrasies have imbued my time on earth with welcome bursts of color and verve. Who needs normal? Normal is boring. Why just have a peanut butter sandwich when the addition of a few slices of banana can make all the difference between banal and splendiferous. So, bananas it is!

I suppose the roots of my appeal to those who are somewhat off kilter may lie in the fact that my family is chock full of endearing kooks of all varieties, from the full on nutso to those with quieter quirks. In my formative years I spent much of my time with an aunt who was practically a shut in, a woman who had retreated from the world at large and instead, with her vivid imagination, created one of her own; a realm full of magic incantations and mystical powers in which, it seemed to my young mind, absolutely anything was possible. In fact, I'm still half expecting the massive and all-powerful robot that she promised was going to be delivered decades ago to arrive at my door any day now. As my aunt would almost certainly say, "Malika Malika Woo, Make It Come True!".

My paternal grandfather was a gangster during prohibition, and my paternal grandmother a larger-than-life figure whose presence filled any room to bursting. She had a massive personality and could be wildly generous, wickedly narcissistic, wonderfully charming, and willfully infuriating all in the space of a single sentence. I adored her, though at times I wanted to run her over with my car. And this is just a tiny taste of the family milieu in which I grew up, a roiling jumble of the wacky, goofy, and kooky, an environment that left me with a high tolerance for eccentricity and quite comfortable with those who trickle just a bit wide – perhaps even more so than with those whose existence stays well within the lines.

With that bit of explanation out of the way, please allow me to introduce to you the woman who cuts my hair, Muntha, who is quite unique among New York City hairdressers. Back when I was healthy and working in the music industry, it was practically de rigueur for me to get my hair cut in one of the many trendy New York City hair salons, which all seemed staffed from stem to stern with the fashionable and fabulous. The women who styled my hair almost always had exotic Eastern European accents and legs that were longer than some of the compound sentences I’ve used in this essay.

I never felt comfortable surrounded by the fashionista hair styling brigades, and back then, when haircut time rolled around I’d often find myself filled with a combination of panic and dread. These feelings were only compounded when I got sick and started getting visibly disabled, as I could imagine myself limping through the salon door and setting off “imperfection” alarms, instantaneously followed by my getting zapped and vaporized by laser beams, just like those unfortunates who reached their 30th birthday in the movie Logan’s Run. The chic would then let out a little “huzzah”, congratulate each other on their wonderfulness, and soon get back to their snipping, teasing, and rinsing.

I found Muntha soon after I became wheelchair bound (I know, not a politically correct term, but I really don’t care). She works in a dowdy little beauty parlor in my neighborhood, which caters mostly to the elderly inhabitants of a 45-year-old condominium complex that is located across the street. Muntha is a Thai woman around 60 years old, a bit pear-shaped, maybe an inch or two over five feet tall, and she usually sports bright red or fuchsia hair. Around her neck she wears a half dozen or so gold plated pendants, all depicting the Buddha in various poses. She always has a huge smile on her face, and we’ve grown to share a genuine affection for each other.

Muntha practices her own peculiar form of evangelical Buddhism. The words “evangelical” and “Buddhism” are not usually used in combination, as practicing Buddhists are almost always profoundly serene souls, more inclined to inspire by example than by word. Not Muntha, though. During my haircuts she chatters endlessly about the Buddha, his teachings, and her fairly simple and slightly skewed take on the tenets of the religion.

She often tells me of her bus trips down to Atlantic City, where she plays the slots and feeds the feral cats that live underneath the boardwalk. I’ve seen her walking around the neighborhood spreading breadcrumbs and birdseed for the city's pigeons and squirrels. A belief in reincarnation is at the core of most forms of Buddhism, and Muntha is intent on insuring that her next life will be much more comfortable than the one she’s now living. Apparently, feeding critters and building up the good karma this engenders is key to her mission.

During Muntha’s haircut soliloquies she sometimes reveals insights she’s gained while meditating. Soon after Michael Jackson died, she quelled my anxieties and fears about how The King of Pop might be faring in the afterlife by spontaneously telling me that Jacko had found a spot in one of the higher levels of Buddhist heaven and was very comfortable indeed, resplendent in golden pajamas and eating all sorts of heavenly biscuits that were free for the taking. What a relief! I thought of querying her on whether the whole pedophilia thing might negatively impact his lot in life next time around, but then thought better of it. Muntha brings simplicity to the complexities of life, why throw a sticky wicket into the works?

And now, dear readers, I will finally reveal to you the how's and why's and where's of my illness, the metaphysical circumstances which not only led to my getting sick, but also to my wife being tasked with being my caregiver. During a recent meditation, Muntha was struck with the revelation that my current unfortunate circumstances were brought about because – brace yourself – in my most recent past life I was a raging alcoholic who was cruel to animals, and my wife Karen was the person who plied me with booze. Thus, our plight in this life is directly attributable to the misdeeds we committed in our previous incarnation, mine for hitting the sauce and then doing the same to our furry friends, and Karen for encouraging the thirst that made me misbehave so horribly. Makes perfect sense, no?

I’m planning on writing Muntha’s revelations up into a scholarly paper and submitting it to one of the prestigious medical journals, as this explanation for my illness makes at least as much sense as anything the neurologists have told me. My only quandary is whether I should share my Nobel Prize with Muntha. I suppose it’s only right that I do. Besides, if I don’t, in the next life I might be a leper.

At the end of every haircut, Muntha gives me a ritualistic Buddhist blessing of her own design, and I give her a tip for herself and also some money for the Buddha, which she donates at the Buddhist temple she attends. We always part by giving each other a sweet little peck on the cheek. Muntha assures me that in my next life I will be rich and strong as an ox, and that Karen will be there once again at my side, this time around living the good life. At least we have something to look forward to.

I hope this meandering tale has been of great value to my Wheelchair Kamikaze brethren. If any of you are right now guzzling malt liquor and getting ready to drop kick the family Pomeranian, for the sake of all that is holy –  stop and take heed ! The life you save may be your next one.

I’d just like to add that I am, in fact, a student of many Eastern philosophical/religious beliefs, and I don’t mean to denigrate in any way the tenets of Buddhist thought and practice. It’s just that Muntha and her antics tickle me to no end, and often provide comic relief just when it’s needed most. Thank heavens for people like Muntha, without whom this earth would be a very dreary place indeed.

35 comments:

  1. Entertaining post but not what I was expecting. I expected some scientific, brain crushing info on how exactly you got this shitty disease but enjoyed the read.

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  2. Entertaining post but not what I was expecting. I expected some scientific, brain crushing info on how exactly you got this shitty disease but enjoyed the read.

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    1. Wish I could have crushed your brain, but hoping I at least tickled your funnybone. The brain crushing will have to wait for a future post

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    2. Can't find the LOVE icon to tap so THANK YOU for cracking me up this morning- At first I thought- oh right, it's having a family of eccentric yet larger than life characters in a family- we're all alike.. THEN when you introduced Muntha it seemed as if you might be telling us we all need to go get a Muntha- but alas - the laughing was the point ... I'm still wondering where I can find a Muntha in my swanky Florida community... one can dream... Dana

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  3. Hi marc,
    Long time reader, first time commenter.
    I'm about your age and have a version of the same disease.
    Also have an eerily similar name, Mark! I know right, what are the odds, like 1 in 5?
    This post cracked me up.
    But, that's not why I'm finally commenting. I have some time just now, and decided it's time I thanked you for what you do here. In my next life I'd rather not end up an unappreciated genius...Again ;-)
    Thank you!

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    1. You're very welcome. Of our first names is spooky! Perhaps we were separated at birth. As for unappreciated geniuses, I know quite a few. And they can think of a few supposed geniuses that I think actually should be underappreciated… Luck plays a tremendous role in who gets the spotlight shining on them…

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  4. Interesting. I have been so desperate at times, I have sought spiritual answers in strange places. In a particular session, the problem was spiritual baggage. In a past life, so they said, I was fighting the Phillistines in ancient Israel and because I lost, the spiritual DNA caused my illness. I grew up and did not look for these answers in later life. Not really that helpful.

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    1. No, not helpful, other than in perhaps providing us with things to think about in regards to how best to live life in our current incarnation. And that goes for all of the past lives that are contained within this life. For instance, there are so many lessons I've learned by looking back on my old healthy life, only to find that now I can hardly put them to use because of the constrictions of my current predicament. Ain't that a kick in the head…

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  5. Hello Marc. Loved reading about Muntha. We all need a Muntha in our lives . . . as you indicated, great comic relief. Thanks for all you do.

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    1. Thanks for commenting, Betty. Yes, everyone should have at least one month in their life, but unfortunately some people shy away from those who stray from the norm. I've always found it far more interesting to give them a chance…

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  6. I'd get my hair cut often as I could, if I had a Muntha. What a great find.

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    1. Yes, Muntha certainly makes getting my hair cut something of an event. They actually recently closed down the dowdy old beauty polish used to work at (due to rent increases), so now she works at a kind of second-tier but much more fashionable salon. Which makes her antics all the more incongruous, and thus entertaining.

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  7. Enjoyed your story. Like all religions, they take the easy way out. However, the idea of past lives is, actually, our DNA, isn't it? Our ancestry and our genes affect our health and can cause some of our diseases.

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    1. Hi Joan, very astute observations. In fact, the study of epigenetics, or how our genetics can be defected from generation to generation is a growing field of study. Researchers have looked at the children and grandchildren of Holocaust survivors, and found that more than would be expected to suffer from a variety of ailments, presumably because of the stress theirforbearers went through. Fascinating stuff…

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  9. I just wish I could make up so colorful an explanation for contracting "the misery," but I'm just an ordinary folk who had the bad luck of having a roving boyfriend who brought home a raging case of Mono. He should thank his lucky stars I broke off our engagement (for all the reasons you can imagine!), and moved far, far away before my very slow case of chronic progressive MS became loud enough to earn the label. I did look for him...just to have a nice talk, reminisce about old times...but never found him. If I had, he'd be the one suffering from some uncomfortable physical issues...with a great story to tell about his encounter with a very interesting woman he'll never forget. :)

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    1. Thanks for sharing, Penny. Surprised you couldn't find your former Mononucleosis bearing boyfriend, these days, with Facebook and all, seems like nobody is buried in the past.

      There's been a tremendous uptick in research on the role of EBV (the virus that causes mono) in multiple sclerosis. I'm planning on writing a blog post about it soon. Seems that in combination with genetic predisposition, Epstein-Barr virus plays a very, very key role in the multiple sclerosis disease process. Keep in mind, the virus is so common that if you hadn't contracted it from that boyfriend you very likely would've picked it up somewhere else. Researchers have pretty much settled on the fact that if you have ms you have EBV. Like I said, more on this later in a future blog post…

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  10. Oh, Marc...

    "The women who styled my hair almost always had exotic Eastern European accents and legs that were longer than some of the compound sentences I’ve used in this essay."

    You've managed to out-Guy Noir Garrison Keillor with that one.

    Add an extra kiss on the cheek from me to Muntha's the next time you see her.

    Your literary admirer and Jacqui's caregiver-spouse.

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    1. Hey Steven, so glad you liked that line. It gave me a chuckle as I was writing it. One of my favorite takes on that particular literary construct was "she had legs that went all the way from her ankles to the top of her hips". Can't remember where I read it, but that one cracked me up.

      Please send my regards to Jacqui...

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  11. Marc,
    What is it with Asian cosmetologists? Besides laughing my, you know what, off, your story reminded me of George's. His lady excitedly told him she had found a way to cure him. Just jump out of a helicopter which cured her friend. Basically, I guess she had a colon issue and it scared the s**t out of her.
    Well, he wrote about it in his blog, never tried it and to this day I think it might have worked better than all the other stuff he tried. Thanks for the laugh and stay off the sauce.
    Love you,
    Hilda

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    1. Hilda, I vividly remember George telling me the helicopter story. We both laughed for a good 15 minutes afterwards. Nothing your son liked more than a good, hearty, straight from the gut laugh. So glad I shared some with him.

      I'm definitely staying off the sauce, unfortunately. Nothing I like more than to tie one on, but alcohol and my neurologic stuff just don't mix. The cruelties are never-ending…

      XO, Marc

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  12. PS...I wasn't trying to be disparaging. I think both women were genuinely concerned and certainly tyring to be helpful. Well, maybe in your case, someone else's spirit got in the way.
    H.

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  13. Oh well, now, how could I resist chiming in on this. It is gray and cold here and there was actually snow or frost on some of my bushes this morning so a good chuckle was exactly what I was needing. I am envious of your frequent visits to such a font of wisdom and entertainment.

    I love the idea that you and Karen are headed for a healthy and rich existence (and perhaps I might extrapolate that it could apply to me as well?) Yeah, I can smile over this possibility and I can smile over the notion that we would have to be complete doofuses if we didn't learn a few life-lessons from living with this crappy disease. It's just that I'm not so confident that even my MS-learned lessons would outweigh the idiocies of my youth and middle age. See there, she made me think.

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    1. Daphne, as for the idiocies of youth and middle-age, you and me both, sister… Though, in retrospect, I don't so much regret the things I did as the things I didn't do.

      Glad I could bring you a chuckle, and what's up with snow on the ground at the end of April?

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  14. Oh Marc you did it once again.... you gifted writer! I thought you found the Holy Grail!!!!!! Cheeky and yet, some humor is always welcome in MS community.., any views on Daclizumab? (Serious now)

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    1. Hi, glad you appreciated the MS humor. I do wish, though, that I could have provided the Holy Grail. Who knows, maybe someday?

      As for the daclizumab, I think it's a very interesting drug. It has a different mechanism of action than any of the other MS drugs, in that it targets an entirely different set of immune system mechanisms. Though I don't have any personal experience with the drug, from what I've read it appears that it isn't as good as some of the other MS pharmaceuticals at cutting annual relapse rates and the appearance of enhancing lesions, but it does seem to slow down brain volume loss as well as delay progression, which are probably more important measures.

      I do think that the drug warrants further investigation, and if anybody has any personal experiences with it I would love to hear about them. I don't think it's at the top of the "prescribe me" list of many neurologists, but then again many neurologists just follow the path of least resistance. With all of the attention now being given to the anti-B cell drugs, daclizumab will probably be only further lost in the mix, but that doesn't mean it's not a useful weapon in the arsenal.

      Once again, though, it's not anything close to a cure, and I do wish that instead of focusing on finding better and fancier ways of suppressing the immune system some serious research dollars would go towards looking for the underlying cause of the disease. But that would kill the goose that lays the golden eggs…

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  15. Oddball, character or crank that I am Marc I, and maybe other readers, like your posts and therefore want to save the alert emails in a folder. Trouble is they (in certain email programs) all look exactly the same - just the name of your blog.

    To add the post title to that alert email subject line I have assembled instructions on the DavesRaves blog (Google *precisely* this)

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    1. Hey Dave, thanks for the tip! Am I to understand that after inserting that little bit of code the feed burner emails will automatically include the title of my latest post in the subject line, or do I actually have to manually go back in and change the title each time? Hoping the case is the former, of course.

      I did first Google only "Davesraves", and got a whole lot of links to a party planning website. The wonders of modern technology…

      Thanks again, something I would have never thought of myself…

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    2. Oh, BTW, I'm also a huge fan of the Multiple Sclerosis Research blog.

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  16. Marc,
    You should check out Atara Bio's phase 1 trial for ATA 188. I'm really glad Dr. Pender's EBV research is starting to get some notice.

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    1. Hi, yes, it is very encouraging that Dr. Bender's research is finding success and getting publicity. Unfortunately, I'm afraid that the pharmaceutical company's decision to pursue an allogenic form of the treatment rather than the autologous form that Dr. Bender used means that the path towards getting this into actual clinical use will take much longer.

      This seems to be another case of a pharmaceutical company putting profit before patient interests. Dr. Bender's autologous approach, which has already been used on humans (this is what the phase 1 trial used), could be ramped up and put into later stage trials rather quickly, I would think, but the allogenic approach seems fraught with potential pitfalls.

      One prominent researcher recently wrote that the decision to go with an allogenic approach is "bonkers". This approach leaves the door open for all kinds of detrimental side effects, including a rejection of the allogenic cells. Of course, this would also mean that the therapy could be mass-produced as a widely distributed and presumably hyper expensive drug. I'm sure the autologous approach would also be quite expensive, but using a patient's own cells negates many of the possible negatives associated with this type of therapy.

      So, this is actually a great news/bad news scenario….

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  17. Hi Marc.

    My name is Larry Rosenzweig. I live in Melbourne, Australia. I have primary progressive MS and am on the verge of making the transition from forearm crutches to a wheelchair. My hips are unfortunately giving up the ghost.
    That aside, I absolutely love your blogs - not only because the information is so well presented, but also, because they are so well written. I am the author of several science fictions novels. I have just completed a quirky science fiction novel for adults titled "Customised Clive". It's in the superhero genre. I am hoping it will eventually become a best seller.
    However, I would like the final product to be a collaboration between the two of us. In other words, I'd like you to be the co-author. I would like you to read the completed manuscript and then add layers of your linguistic magic. The characters are both complex and humorous and the story-line very unique.
    Please let me know if you are interested in at least exploring this opportunity. If so, please provide me with an email address and/or skype details so that we can discuss further. My previous works include "The Galactic Adventures of Alex McKenzie" series which you can view and download for free on Amazon Kindle or Smashwords.

    I have a very strong feeling that this collaboration could be the start of something really amazing.

    Cheers,

    Larry Rosenzweig
    info@larryrosenzweig.com.au
    www.larryrosenzweig.com.au
    skype: fictionauthor

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    1. Hi Larry, thanks so much for your effusive praise for my blog. Much appreciated.

      At this point, I wish I could say that flattery will get you everywhere, but unfortunately the realities of my situation make any chance at collaboration extremely difficult if not impossible. My disease is taking an increasing toll, and it's all I can do to keep up with the writing of this blog and all that the blog's success engenders. It's a classic case of the spirit being willing but the body being unable.

      I wish you all the best in your endeavors to become a best-selling author. I wish I could offer more than that, but we must play the cards that we are dealt, to the best of our abilities.

      Thanks again for your kind words and generous offer…

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  18. Thanks Marc.

    I truly do understand. Although my mind is still as sharp as a tack,intense fatigue and severe spasticity conspire to slow me down in my own endeavours.

    If things hopefully improve for both of us in the future, the offer still stands. You are a very talented writer and I am a gifted storyteller (or so I am continually reminded).I think we would blend well together.

    Take care and thank you for the wonderful job you do of both informing all of us and keeping us entertained.

    All the best,

    Larry.

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  19. Marc:
    So on the plus side, with your blatant history of animal abuse, at least you weren't kharma-ized to play for the Atlantic Falcons and Philadelphia Eagles like Michael Vick was.

    ;-)

    KRC-Tim

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