Well, if you’re listening, I think there’s been a terrible mistake. You see, I’ve got this, well, this creeping paralysis, and it just won’t stop creeping… and creeping… and creeping. It’s creeping so much that it’s creeping me out, and I’m afraid it’s about to swallow me. So, before things get completely out of hand, I’d like to lodge a formal complaint and see if I can get some kind of a cosmic credit, or even maybe a do-over. You know, like back in the schoolyard, when in the middle of a game something would go wrong and all the kids would agree to just wipe the slate clean, and make believe that whatever happened never happened. Do you think we could work something out along those lines? A do-over? Just one?
The department store Nordstrom is famous for taking back almost any item, even if it’s been used, and I’m thinking I must be due some kind of refund or other form of galactic recompense. I mean, if Nordstrom can do it, certainly you, a universe filled with multiple dimensions and all kinds of crazy quarks and pulsars and quasars, must have some way of correcting what has obviously been a royal screwup. No, I don’t have a receipt, but I do have a birth certificate and an expired driver’s license, will that do?
Because, really, I’m pretty sure this isn’t the way things were meant to play out. I’m fairly certain that somewhere along the line the story of my life has gone way off script, like in one of those old movies where somebody accidentally picks up the wrong suitcase at an airport or train station and their fates get switched with the person who picked up their suitcase, and all sorts of wackiness then ensues. I’m positive that somehow my cosmic suitcase got switched, and I’m not at all happy with the ensuing wackiness.
When I was younger, I had a preview reel of what my life would be like running through my head, and I’m certain that literally feeling sick and tired all of the time while becoming ever increasingly paralyzed wasn’t in any of the selected scenes playing on an endless loop in my noggin. I was going to be a famous writer, rock star, or movie director, and my life was supposed to be filled with all kinds of exciting escapades and adventures, with just enough drama thrown in to make things interesting. I wasn't expecting a fairytale, but the screen in my head wasn’t showing a disaster flick, either.
Yes, yes, I know, all of that might seem ridiculous and downright juvenile, but I never claimed to be the paragon of maturity. After all, you’re only young once but you can be immature forever, right? And yeah, I’m well aware that almost no one’s youthful dreams ever really come true, but I never ever imagined that dreams could so easily turn into nightmares. Looking back I’ll admit that I didn’t always make the best choices, and probably made more than my share of mistakes, but surely I never did anything bad enough to deserve this, did I?
I mean, I just watched a television interview with the serial killer Son of Sam, who slaughtered six people and terrorized New York City for months on end back when I was a teenager, and he looked healthy as a horse sitting there in prison. Doesn’t he deserve a nice dose of creeping paralysis? Or how about the monsters who rape or hurt children, or plot horrific terrorist attacks that kill dozens or hundreds of people? I see them on the news all the time, looking all hale and hearty. How about a liberal sprinkling of progressive multiple sclerosis for them?
Believe me, you don’t have to tell me that I’m no saint, but even with all of my missteps and blunders and mistakes, the person I hurt worst of all most often seems to have been myself. Being sick has given me all kinds of time to look back and analyze my past, and at this point I think my regrets have regrets. I’d love to be able to use some of the insights all of this introspection has given me to live a more worthy life and forge a future free of the dunderheaded moves of my past, but the way things are heading if I think too much about my future I might just poop in my pants. As a matter of fact, without being granted a cosmic refund or credit or do-over, pooping in my pants could very well be a large part of my future. Gross. And things could very well only go downhill from there.
I’ll admit that getting sick hasn’t been all bad, and in some ways it’s given me freedoms that I probably otherwise never would have realized. I was able to stop working and start writing, which is probably what I should have been doing all along. Before this creeping paralysis crept so far I was able to take lots of photos and videos from my wheelchair, fulfilling creative impulses I’d long dreamt of indulging (without the wheelchair part), but I’m afraid those days are probably over. I sure have learned a heckuva lot and met all kinds of interesting people, many of them fellow patients, most of whom, FYI, also don’t deserve the crap they’ve been slapped with. It would be nice, Mr. or Mrs. Cosmos, if you could find a way to cut them more than a little slack, too. I’ve discovered emotional and physical resources within myself that I didn’t know existed, which has been kind of cool. But now things are getting pretty dicey, and I think I’ve squeezed all the positives out of this experience that there are to be squeezed. In all honesty, I’m getting scared. Really, really scared.
So what do you say? Can you give a brother a break? How about this: forget about making me better, just stop me from getting any worse, okay? Certainly not the ideal situation from my perspective, but I’ll take it. How’s that for a compromise? See, I’m reasonable, not like all those asshats in Washington. Can’t we work something out? A little give-and-take? I’m not sure I have all that much left to give, but I’m open to suggestions. I’ll be right here waiting for your answer, just a pimple on a flea’s ass in this ever-expanding universe, but I trust that you’ll know where to find me.
Morning Marc, great post, thank you. Woke up with a Jimmy Cliff tune on my mind I did. "Many Rivers to Cross.."ReplyDelete
Ah, I haven't heard that tune in a while. It's perfect. Thank you for that, a balm for the soul. The harder they come, the harder they fall, one and all…Delete
Hi Marc, morning to you.ReplyDelete
Some of our uncomfortable holiday visitors started for the door when I said that I knew why some people find religion when faced with tests of will and strength. For me, "Yea, because at the end I have a couple of questions!!" Like where's the hyperspace button, yes.
Thanks a lot for writing, much appreciated. Stay warm and well Marc.
Hey Tom, I have yet to find a religion that is fully satisfying, though the Eastern philosophies come closest. To my mind, the universe is simply far too complex and mysterious for our puny little brains to ever even begin to comprehend, and anybody who tells you they've got it all figured out and distilled into words in a book should be looked at with crossed eyes. That said, there is much room for mystery, and I do believe that consciousness can transcend the physical. So, basically, I submit to the confusion but can't help but ponder the imponderable.Delete
Hey, if you ever do find that Hyperspace button, please do tell…
Yep, that pretty well sums it up alright. Thanks for the kvetch for all of us!ReplyDelete
Very happy to lead the group kvetch. I only wish so many of us didn't have ample reason to kvetch.Delete
Mark you are reading my mind!ReplyDelete
Better watch what you're thinking, then! Santa won't be the only one who knows whether you've been naughty or nice…Delete
I say pretty much the same thing as you, being in pretty much the same condition. The only difference is, I don't say it/or write it nearly so eloquently!ReplyDelete
Believe me, I'm not always such a font of eloquence. Most of my utterances are comprised of moans, gurgles, and burps. Oh, and the occasional Bronx cheer…Delete
Dear Marc, Nobody walking in our shoes would choose this debilitating existence, but nonetheless, here it is. I just keep repeating, "The cause and the cure, the cause and the cure..." Hope I live long enough to see young people benefit from that discovery. No more suffering for them would be good. Stay strong my friend.ReplyDelete
You stay strong too, Roberta. Certainly would be nice if they could find the cause of this thing, wouldn't it? Of course, in order to find the cause they have to be looking for it, but don't get me started.Delete
It sure would be nice to know that we were the last group of people ever to be stricken with this crap, though. As frustrating as it would be if they figured out a way to eradicate the disease but not cure it, it would be wonderful to know that no one else would have to stumble down this path…
None of us deserved this! There is no fair in the universe. Nothing you could have possibly done could have earned this result. Thank you for your willingness to share all you have learned along your journey. You have helped the masses along your way and it has been most appreciated. Sending the cosmo vibes to halt progress (if not restore you). I echo Roberta- Stay strong my friend.ReplyDelete
You are absolutely right, there is really no such thing as "fair" and "unfair". Both are just human constructs. We are all just shiny silver balls ricocheting around the pinball machine of the universe. Unfortunately, some of us have gotten caught in machines that have gone "tilt"… Does anybody still know what that means? Have pinball machines, the way of the dodo? I sure hope not…Delete
Pinball. ANOTHER pleasure in life that PPMS took from me.Delete
Yup, me too. In fact, back in the 90s, I OWNED a vintage pinball machine! It was the centerpiece of my living room, back in my bachelor days…Delete
I know, right?ReplyDelete
I've followed your blog for years now. First, it was amusement at your videos, then admiration for your photography, and now a reticence for witnessing in so personal a means of, well, creeping paralysis. I've heard a couple of people say recently that when they die, they hope their body is used up, having made the most of every moment. Your moments aren't what you or anyone would wish, but you are accomplishing just that. For those that share your disease or support those that do, you matter. Thank you, from someone blessedly untouched by MS other than checking in on you.ReplyDelete
Thank you so much for your very touching words, Reese. I suppose I'm trying my best to make the most out of every moment, at least most of the time, but all things being equal I'd rather be in Philadelphia. Oh, geez, now I'm stealing material from WC Fields. Well, if you going to steal, might as well steal from the best…Delete
But seriously, thanks for your very kind words, they are most appreciated.
Fairness? At times, I think it's just all a random set of occurrences. Even our biological existence in its most basic origins might just be the result of randomness. And (the psychologist asks) how does that make you feel? Like I'd better try to make something meaningful of it all or I might descend into irretrievably dark depression. As it is, I skirt around that darkness often enough.ReplyDelete
Well, without that darkness there could be no light, and for some of us that shadow that always seems just a breath away is what keeps us moving forward. Though I do subscribe to the idea that randomness is and always has been the order of the day, we humans love to find patterns in the randomness, don't we? And is there anything such as true randomness, or can discrete sequences always be found amidst the noise? And doesn't the theory of entropy state that all order descends into randomness eventually?Delete
So how does that make me (and you) feel? Depends on when you ask, I guess, given all the randomness…
This is the precise weblog for anybody who needs to seek out out about this topic. You notice so much its almost arduous to argue with you. You positively put a brand new spin on a subject that's been written about for years. Nice stuff, simply nice!ReplyDelete
Something tells me that this is a spam message, but it's such an intriguing jumble of words that I've decided to leave it here. As you so eloquently stated, nice stuff, simply nice! Armpit scrambled eggs nutbone figurines.Delete
Marc, Thank you for addressing this letter to the 'Universe' about time! Actually, this was a masterfully written piece - you did good!ReplyDelete
From a fellow MS'r your words are 'right on' and much appreciated HOWEVER if the Universe gets pissed you are Marc, Marc who???
Thank you my friend.
Hey, if the universe gets pissed I'd rather remain anonymous. Thank you for your comment, and for the kind words. Not so sure about masterful, but it's nice to know that at least my words have some resonance…Delete
Marc, You wanted to be a Rock Star right? Well how about a Song Writer? I think that this post could be the basis of a new MS Anthem. I think that it really captures how so many of us MSers feel and has a real sense of poetry too. Maybe set to a little mellow acoustic guitar? How about it?ReplyDelete
Anyway, great post!
I think I'd rather set it to some raunchy honky-tonk music, some slide trombone, dirty sax, standup bass and well-worn piano. And, sure, throw some guitar in there too…Delete
I was actually the lead singer of a punk rock band for a while, back in the mid-1980s. Wrote lots of lyrics back then. Material for a future post? That would be fun… Could post some of our old tunes to the web, and spring them on the world all over again. Now there's a project that might keep me busy for a couple weeks…
You're right Honky Tonk is much better. Sax could really express all of the inner conflict, chaos and melancholy. Were you thinking of a Joe Stanley style?Delete
Got it. Saw it. Still makes no sense. Doesn't make it easy. Just makes it really crappy.ReplyDelete
Hilda, I know that you know it better than most, and it makes no sense at all. Love you madly…Delete
Yep... yep... yep... to everything you just said Hilda. Live it everyday and it will NEVER make sense. MSSucks pretty much describes it perfectly. So very thankful for Marc's blog to help lessen the load. Thanks Kamikaze!!!Delete
Hey Marc, check this out on utube : quantum entrainment . They are having a webinar Jan 14, you can go to the website to register.ReplyDelete
All I can say is we are what we think. Start meditating to quiet your mind and find the gap, the point of all power. This my friend is the answer.
Hi Kelly, checked out the YouTube videos, interesting stuff. The skeptic in me gets its cackles up, but I am very much aware of the power of meditation. I have fallen out of practice, lately, and know I must get back to it. Thanks for the reminder, it's quite valuable.Delete
I will check out that website and webinar. Thanks.
Marc, I still check in with your blog and think what a $&#% this disease is. I mean, as Amy Poehler would say, REALLY? Wishing that the Universe cuts you and everyone else with MS a bit of slack. --your professor friend in Texas
Thanks for your comment, and for checking in. Yes, the universe really should give the MS community a break. The general public's view of MS, I fear, is way off the mark. Most don't realize how heinous an illness MS can be. It's terrific that there are folks with MS running marathons and climbing mountains, but the publicity they get dwarfs the reality that there are far too many MSers that can barely leave the house…Delete
'we are what we think', holy shite.My youngest daughter suffered from partially deceased syndrome( her description) She was the most beautiful caring artist and it slaughtered her. The facts: disease duration 8 years 1 day, EDSS 5.5 at diagnosis age 20. Dead at 28 EDSS 7. 53 infusions of natalizumab, shingles after the 53rd and a second catastrophic fatal infection within 5 months.ReplyDelete
Biogen Idec were interested in following up her death and her prescribing neurologist wanted to admit her for investigations the day after a DNR had been issued and my daughter was dying in my home.
Marc, do whatever is good for you each day and best wishes.
I am so, so sorry to hear about the cruel fate your daughter suffered. My heart goes out to you, such a tragedy. There are no words…Delete
Why was bio Jen and, especially, her neurologist so slow on the uptake? Was the neuro tracking her lymphocyte counts and antibody titers? This makes me really freaking angry.
Thanks for the advice and best wishes, and I hope serenity finds you…
Marc the prescribing neurologist wasn't tracking anything! no consent sought to continue after two years of infusions, no updated alert or patient information. No concern at the shingles infection and no appointments to flush the portacath that delivered the infusion.No reply to urgent faxes or phone calls from the General Practitioner.Neuro made contact ten days before my daughter died with an invitation to undergo investigation, his intention was post-mortem investigation as he had classified my daughter as fatal processes rapidly progressing. Biogen Idec medical were interested in following up my daughters death when the parliamentary health service ombudsman contacted them. I contacted Biogen myself during the intial investigation and they gave no indication they knew about my daughters death until after I had imparted a great deal of detail to them which it transpires they had sought previously from the GP practice immediately after her death.Delete
The parliamentary health investigation is ongoing and this month I have been informed the consultant will be investigated by the General Medical Council .Here in the UK a neuro appointment is about every six months. My daughter went without monitoring/supervision after shingles meant she could no longer be infused. Her EDSS score was high at diagnosis and her neurologist referred to her as an unfortunate girl. Words fail me.
She was already severely disabled when she fell catastrophically ill with the second infection, she did however exercise choice and control over her life until her death. There was no hospital admission at the 11th hour and she died here with us.
Her life,her choice. I hope 2015 is good to you.
I'm so sorry to hear of how badly your daughter's case was mishandled. Was the neurologist not doing regular testing for JC virus antibodies and white blood cell counts? If not, it seems he was terribly remiss in his duties. Certainly, after her shingles outbreak, huge red flags should have been waving. Incredible.Delete
At least your daughter was able to exercise choice, and not be put through what often amounts to unnecessary and cruel end of life treatments. I hope you can take some solace in that fact.
Wishing you the best…
zero contact after the shingles outbreak, EDSS 7 at that time and he appears to have just cast my daughter adrift. He made the statement that she died because her treatment was withdrawn. I think level of disability is a factor when it comes to consultant care. Zero monitoring for the months post last infusion,zero counseling to disease reactivation and IRIS. No offer of another DMT, nothing. The port remained unflushed for five months, no appointment for removal, no testing for antibodies etc. The general practitioner was trying to procure advice from the neuro but the neuro stated no concern and stuck to that mind set. No interest at all. In the investigation a 'break ' and a ' degree of confusion ' are now being spoken of in regard to the service failure. My daughter attended her infusion and carried her alert , she put her trust in her prescribing neurologist.She had no idea that the black triangle medication was without monitoring.I do take solace in her determination to maintain control and control until the end.Delete
I can't argue on behalf of this disease. There are certainly many parts I find terrifying. Still, I say prayers with my kids every night despite being agnostic myself, and I lead them in prayers every night because I want them to adopt the practice of finding something in the day for which they are thankful. I sometimes let my daughter start the list of things for which to be thankful when I have had a bad day and am having trouble getting my mind right. She has yet to struggle despite having had multiple heart surgeries, a stroke, learning disabilities, and now slow motility preventing her from being able to eat foods by mouth (a big deal at any age, but for a 9 year old at the holidays?). I don't know many who would have more reason to whine than her. If she can stay resolutely thankful, I feel shamed to do less.ReplyDelete
Perhaps the defense of MS should begin with making us appreciate how little we understand ourselves and allowing us a vast frontier to explore, learn about, and hopefully one day conquer. Alas, I have not the heart big enough nor the wisdom to offer such a defense properly. I'll just start as my daughter often does with a thanks for family, friends, a roof over our heads, and dogs who love us despite all our bodies go through...
Thanks so much for your comment, which is always is filled with much to contemplate. So sorry to hear about your daughter's battles, another example of the notions of "fair" and "unfair" being absolute garbage. She does sound like quite an inspiration, but I'm sure that you and she would much rather her just be a nine-year-old.Delete
I suppose the only defense that might be made for MS is that all wisdom is born of pain, to some extent or another. As you note, though, it's hard to muster the heart to really put that dog in the fight. And, yes, we must be thankful for the simple things. This disease has taught me that the most precious time in the world is a quiet night spent in the company of those you love and who love you back. Dogs included.
I am for being thankful and appreciating the simple joys of life. I see no defense for and no good in MS. losing the ability to eat,drink,communicate and control limbs and bodily functions does not provoke an awakening to life. It takes the living of life years before death occurs. I am glad you are thankful and like yours my daughter never whined at the world. She was the most beautiful caring woman who appreciated everything she had, no lesson needed to be learned. I wish you and yours health and happiness.ReplyDelete
Sorry it took me a while to respond to that last batch of comments, the last week was a little rough…Delete
Thank you for reminding me that falling out my front door this morning was a good thing. Even if my but tells me otherwise.. MS sucks in any form (yep, I just stated the obvious) - and I am pretty sure the town won't let my neighbor and I set up bleachers in his front yard and sell tickets for the much needed extra income. But I am grateful. For the support that I receive, for the network of friends (many of whom laugh themselves into the ditch right there with me) and my family who does whatever I ask - most of the time. I am also grateful to gifted writers like you, who despite living on the crappy end of the galaxy, still manage to to lift others up to see the stars we can only hope one day to touch.ReplyDelete
So sorry to hear about your tumble, but thank you for your very lovely comments. Despite the horrors (and, yes, let's face it, they are horrors) of the disease, one of the positives is that it does give us ample reason to be grateful for things we might otherwise take for granted, such as compassionate friends and family. Seems like you have a good handle on appreciating the absurdity of it all, also, which goes along way…Delete
I enjoy reading your blog. Your scientific and research knowledge and vast vocabulary make the reading interesting and entertaining. You express well the challenges we face and the questions most of us are driven to ask. Sometimes though, our thinking can be so complex that we cannot see or accept simple answers. Not believing in God does not determine His existence. His adversary exists also and has brought about all the bad we deal with. What we do when stricken is up to us. Drawing closer to God as He helps me through it makes sense to me.ReplyDelete