Of course, we can’t be sure that Benjamin Moran suffered from Multiple Sclerosis, as Creeping Paralysis is an apt label for any number of similar maladies, such as ALS (Lou Gehrig’s disease), or advanced spinal stenosis. Still, Creeping Paralysis is a terrific descriptor of the effects of Progressive MS, so much so that I’ve often used the phrase here on these pages, and I’ve considered wielding it as an answer when people wonder out loud just why my backside is stuck in a wheelchair. “Creeping Paralysis” would certainly quench their curiosity more effectively, I would think, than the clunky and hard to decipher answer that I currently employ, “Progressive Multiple Sclerosis”. There is much confusion about just what the hell Progressive Multiple Sclerosis is, even among people with Multiple Sclerosis. Progressive Multiple Sclerosis sounds like some kind of politically left leaning version of the disease, whereby Creeping Paralysis sums up the disease and its perils in two easy to understand words, very clear and concise. “I have Creeping Paralysis”. Conversation over.
Unlike Relapsing Remitting MS, whose torments come in the form of acute attacks that eventually recede, sometimes leaving residual symptoms in their wake, Progressive MS is the gift that keeps on giving, inflicting a slow, steady decline in function leading to ever increasing disability over time. In other words, Creeping Paralysis. Mine first crept up in 2003 as a slight buckling of my right knee that only surfaced after I had walked several miles. I’d experienced any number of weird symptoms for years before, but it was the knee that finally sent me to the doctor. Over the next weeks and months, that initial problem spread to ever-increasing weakness invading my entire right side, insidiously creeping through my right leg, arm, and hand. Three years post diagnosis I needed an ankle brace to keep my right foot from dragging along the ground when I walked, year four saw me using a cane, and in 2008, five years after I’d been slapped with the MS label, my Creeping Paralysis had done enough damage to insist that I use a mechanical throne for ambulation.
Creeping Paralysis treats each of those it abuses differently. I know some folks who have had the disease for decades and are still walking, while others find themselves bedridden within 10 years, sometimes sooner. Generally, the disease treats women more gently than men, although, unlike Relapsing Remitting MS, which victimizes women far more often than men, Progressive MS attacks men and women in equal numbers. While there are currently about a dozen approved treatments (however imperfect they may be) that can help keep the worst ravages of Relapsing Remitting MS at bay, at present there are no treatments that have proven to be effective in even slowing down Progressive MS for the vast majority of the people it attacks.
During my first five years with the disease, the paralysis I experienced felt less like it was creeping and more like it was blitzing through my body like the Nazi armies crashing through Belgium on their way to overtaking a completely underprepared, overwhelmed, and horrified France. Five years may sound like a long time, but when those years see you diminished from fully functional to wheelchair reliant and from working to “on disability” they seem like the blink of an eye.
For many years my Creeping Paralysis was confined almost exclusively to my right side, leaving my left largely untouched, allowing me the hope that this would continue to remain the case and that I’d retain a fully functional left arm and leg, a situation I wasn’t happy about but with which I could make do. ‘Twas not to be, however, as whatever obstacles had kept the creeping temporarily restrained to one hemisphere of my body fell by the wayside, and for the last several years the paralysis has assaulted my right side as well, increasingly taking hold. Despite all efforts – and the list of those efforts is incredibly long and varied – my Creeping Paralysis has yet to meet its Waterloo (yeah, yeah, I know I’m mixing up my military metaphors, so sue me).
Increasingly, I’m finding that Creeping Paralysis is impacting not only my body, but my mind and spirit as well. As the disease has become more and more entrenched, and my body less and less able, I suppose it’s inevitable that the condition takes a psychological toll. I’ve learned that paralysis can extend beyond the physical realm. The bodily restrictions imposed by the disease are increasingly accompanied by a psychological reticence to test the boundaries defined by those restrictions; it’s far easier and much less disheartening to curtail activities that once gave me pleasure rather than find out for sure that I can no longer do them. Thus my old hobbies of shooting videos and taking photos from a camera mounted on my wheelchair have fallen by the wayside, my camera equipment gathering dust for the last 18 months or so, it too victimized by my Creeping Paralysis. The ever less dexterous fingers on my one working hand can’t properly control my camera and lenses, and my last attempts at photography proved to be nothing but exercises in frustration.
When simply getting dressed pushes the limits of what is physically possible, the prospect of committing to social activities becomes daunting. Healthy folks seem to have a hard time understanding this. After all, just a few years ago I was out in my wheelchair meeting them for lunch on a regular basis. Thus, despite my best intentions, Creeping Paralysis has frozen not only some of my body parts but some of my relationships as well. I can’t blame friends and family for drifting away in the wake of unreturned phone calls and unanswered emails, but I try not to blame myself, either. In addition to Creeping Paralysis, I have also to deal with widespread endocrine dysfunction and a hideously painful degenerative bone condition, and at times even when there is a willingness to interact, the effort required for lively conversation or the composition of a lucid note can be simply too much to muster. Creeping Paralysis seems to rejoice in imposing limitations on all aspects of life.
There’s a fine line between capitulating to the disease and adjusting to its ever-changing realities. I have found the that less I am able to do the less I am interested in doing. Being out and about in the healthy world, among all of the obliviously fortunate people whose limbs perform seemingly miraculous feats without any apparent effort – like walking or using a knife and fork – can offer much-needed distraction, but can also place a laserlike focus on all that I’ve lost, almost mocking me for those losses. Even watching television can become a seriocomic affair, as commercial after commercial advertises products that are no longer of any use to me, hawking them to a population of which I am no longer part. Cars, exercise machines, the latest electronic wonders, items that in some long-ago life might’ve piqued my intense interest now serve only to illuminate the ugly metamorphosis I'm experiencing courtesy Creeping Paralysis.
Despite the at times dour tenor of this essay, please know that through it all I still laugh far more than I cry, still strive to find nuggets of joy wherever I can, even if I have to dig through piles of manure to get at them. I’m fighting the many components of my disease as hard if not harder than ever. Earlier today my wife and I chuckled as we marveled over the fact that I’m taking medicines in pretty much every way they can be taken. I’m inhaling aerosolized antifungal medication to treat a potential mold infection in my sinuses; getting injections of testosterone as part of my fight against my endocrine issues, ingesting antimicrobial drops and liquid probiotic cocktails in an effort to rebalance my gut Microbiome, getting an intravenous treatment called plasmapheresis in an attempt to beat back the Creeping Paralysis, and taking pills by the dozen. We concluded that the only mode of drug delivery I’ve missed is anal suppository. I’ll have to get hard at work on that one. Not.
So there you have it, Creeping Paralysis and my experiences with it. Hopefully, with an assist from modern medicine, I’ll ultimately fare better with the disease than the unfortunate Mr. Benjamin Moran, whose obituary I highlighted earlier. Somehow, calling my illness Creeping Paralysis rather than its more modern and scientific name gives me some strange sense of satisfaction. No beating around the bush with a name like Creeping Paralysis, it presents the illness in all its stark reality. Using a term as impenetrable as Progressive Multiple Sclerosis in some ways insulates those involved from confronting directly the potential horrors of the disease, a trick at which modern medical nomenclature excels. I’d rather stare this bastard right in the eyes and call it what it is: Creeping Paralysis, a name as ugly as the disease itself.
Oh, if anybody can shed any light on "the culture of the jumping cat" that is mentioned in Benjamin Moran's obituary, I would be forever grateful. Again, you can download the obituary by (clicking here). I'd just love to know what was meant in the 1880s by "the culture of the jumping cat", but can find no reference to it anyplace else. Please leave any ideas in the comments section of this post.
Yup, creeping paralysis pretty much describes my situation too. I once heard a radio commentator say something like, "Didn't Richard Pryor suffer from one of those wasting away diseases like MS?" Wasting away – that's another good one.ReplyDelete
Yeah, Mitch, wasting away is another "good" one. I often liken having this disease to being forced to watch yourself disappear by inches. As positive a spin as I know we both try to maintain, there are much better ways to spend your time. BTW, did you see the Richard Pryor documentary? Very well done, but one of the few times I've become overwhelmed with emotion during my whole "MS career". Nevertheless, highly recommended, Richard Pryor was an amazing human being, faults and all…Delete
You have so accurately and eloquently expressed my situation. Especially the bit about the effort it takes to get dressed in order to participate in life. Friends don't get it, no matter how much they want to understand. Thank you for all you do for the MS community and keep on keeping on my friend.ReplyDelete
Thanks for the nice words, and I'm sorry it took me so long to respond. I've been doing weekly plasmapheresis treatments, and they kind of kick my ass for several days afterwards. I did one the day after I put this post up.Delete
I think it's impossible for anybody not going through the experience of creeping paralysis to really understand just how tough it is, both physically and emotionally. I find one of the worst things is that the disease is simply unrelenting, and just doesn't give you a break. At one point earlier on I would have good days that were actually pretty good, but these days even my good days leave much to be desired. Still, nothing to do but keep on keeping on, so we keep on…
I believe the jumping cat reference in Moran's obituary is an idiom used to describe people who hesitate to take action until they see how others deal with a similar situation.ReplyDelete
Seems you are correct, sir. If you read some of the comments further down some folks provided some wonderful research on the expression. Seems that can be used to cut both ways, although it was usually used as a derogatory. In Mr. Moran's case, though, it seems to have been meant as praise, meaning that he was quite deliberative and hardly made a misstep. Thanks for commenting.Delete
Marc, I am crushed ... I thought one could Google anything and find an answer! Culture of the jumping cat - could you make something up and put my heart at ease? Mary BethReplyDelete
Hi Mary Beth, yes, I also thought that googling could turn up the answer to any question, but failed in my Google attempts. Thankfully, some of your fellow readers provided fascinating research on the subject, please see below…Delete
Fascinating results to your query ... perhaps you can offer your blog as an adjunct to Google - for those who cannot find a answer. You have such a broad following, someone who reads your words can provide insight. Now if we could find an answer for the dreaded 'creeping paralysis'...Delete
Tony Faske is correct. Here is the text of a speech Lord Randolph Churchill (Winston's father) gave in 1885 about the leader of the Liberal Party:ReplyDelete
THE POLICY OF THE JUMPING CAT
In reading over that speech the first opinion which came across me the first question I asked myself was, Why does Lord Hartington oppose Lord Salisbury's Government? -- because there was not a word, not a line, not a sentence, not a single political opinion which betrayed the smallest or faintest shred of difference in political principle between Lord Hartington and those who are now responsible Ministers of the Crown. I will ask your attention while I make to you quotations from that speech, It has been described as the speech of a leader, and it has been described as a weighty speech, If it is the speech of a leader to say absolutely nothing which his followers can take for a lead, and if it is weighty to make a speech which should leave those who read it or hear i tweighed down and oppressed by every doubt and deficiency, then undoubtedly it was a leader-like and weighty speech/ Lord Hartington began that speech by saying that it was not his intention, and at least it would not be his endeavour, to make anything in the nature pf an electioneering speech. He said "There is still a considerable interval which must elapse before the dissolution of Parliament and the new election, and I should prefer, and I think you would prefer that topics relating to the elections of a directly controversial character should, as far as possible, be postponed until that event occurs." Well, it is only about ten weeks before the general election will take place, and I think the postponement of great political topics under these circumstances is a most questionable proceeding. What I venture to ask you is this -- for you may be ble to assist me -- I want to know what is the difference between an ordinary political speech and an electioneering speech. It is six of one and half a dozen of the other. When he says he is going to make a political speech and not an electioneering speech it is perfectly evident he is reserving for the future a speech of a totally different tone and quality. Then he says he will reserve "controversial topics" until the general election takes place. What does that mean? That is called in vulgar language the policy of the jumping cat. Now observe how this is borne out by what Lord Hartington saik. He says, "By the time at which the general election shall occur the issues which will be decided upon by the country will probably be more clearly defined, and we shall all know more precisely what are the changes which we shall be called upon to make, and find out what are the positions we are called upon to defend or attack." I am told that that is the speech of a leader of a great party; that he is to wait till the general election occurs before he knows what changes his party may think right to propose for the benefit of the country and what positions, political or otherwise, his party will think proper to defend or to attack. Now I want to ask you as a great body assembled here of intelligent Yorkshiremen, do you propose to put confidence to place your political confidence for a period of five or six years, in a political leader and a political party who postpone all subjects of controversy giving no opinion upon them until you shall have been deluded into giving your votes?
On the positive side (as used in Moran's obituary), the policy of the jumping cat was considered to be the prudence of keeping an open mind. From The Saturday Review of Politics, 1895:
Mr Gladstone however would neither admit that his envoy had prejudged the question nor that he would be bound by his agent's opinion; Sir Gerald Portal would keep a fair mind and HM Government would keep a fair mind -- the policy of the jumping cat.
Thanks for the illuminating research, Katja. Much appreciated, and quite fascinating. It's funny how language evolves, with expressions falling in and out of use. This one seems to stand up to the test of time, I wonder why it fell out of favor?Delete
Just as I was getting Totally discouraged and feeling helpless you started talking about positives in your life. I have realized the hard way That no matter how real my struggles are people do not want to hear it. They want to hear positive how you have overcome how you could be an inspiration.... this is the only way kept friends. And the weaker ones there's no hope. And then there are friends and family that will make even the positives in your life sound like a struggle and bad and harder than everyone else's. This disease has affected my mind yet but people cannot give me that dignity all they see is helplessness because they see a wheelchair. the day I go all day without one depressing thought is usually a day that I spent entirely alone.ReplyDelete
Sorry...has not affected my mind yet....well not too much anyway.Delete
I completely understand and concur, Donna. Other people can be both a blessing and a curse. Old friends who are especially close quickly come to see only you, and the disabilities and wheelchair seem to disappear. Others, though, get overwhelmed by the changes, and tend to shy away. They not only feel bad for us but also are reminded of the frailties of their own "normal". But nobody seems to get, though, is just how exhausting simply trying to be social is for us. A couple of hours of simply having an engaging conversation can feel like running a marathon…Delete
Thank you for your blog, which I often read.I have a friend with ms, and I am really worried that I will lose him as a friend. What can I do?Delete
I wish I had an answer for you, anonymous. Just try to be there for your friend, and help them as best you can to get through the daily struggles of living with the disease. I guess the old adage "seize the day" is the best you can do. If he's interested, you can point them to this blog, in which I try to include all of the recent MS news and research. There are a lot of new approaches in trials, so there is reason for hope…Delete
Thank you very much for your reply! And for your blog! All the very best to you!!Delete
Marc--The cult of the jumping cat means to wait and see how something turns out before leaping. Mr Moran apparently was good at quickly assessing situations and so wasn't impetuous in response.ReplyDelete
I'm very sorry to hear that your creeping paralysis is leading to creeping isolation. I'd love to crack some jokes and winge and whine with you if you ever do feel up to it. ~ Pasopati
From: Slang and its Analogues (1893) http://www.horntip.com/html/books_%26_MSS/1890s/1890-1909_slang_and_its_analogues_%28HCs%29/1896_vol_4/index.htm
TO see how the cat will jump, verb. phr. (common).—To watch the course of events ; to sit
on the fence (q.v.).
1825. Universal Songster, i. ('The Dog's-Meat Man'). He soon saw which way the cat did jump, And his company he offered plump.
1827. Scott, in Croker Pap. (1884), i. xi. 319. Had I time, I believe I would come to London merely to see how the cat jumped.
1853. Bulwer Lytton, My Novel, iv. p. 228. ' But I rely equally on your friendly promise.' 'Promise! No—I don't promise. I must first see how the cat jumps.'
1859. Lever, Davenport Dunn, in. 229. You'll see with half an eye how
the cat jumps.
Thanks so much for this info. I find language and idioms fascinating, although the only language I speak or understand is English. I should probably take advantage of all of this time spent sclerosing to learn the language. Maybe I'll pick up one of those Rosetta Stone programs.Delete
Thanks again for the research, much appreciated.
That's a good one ___ gave me a chuckle this Christmas morn.
God Bless you and yours.
Your buddy, Greek, obviously was not of the school of the creeping cat. He had no use for any kind of creeping.ReplyDelete
George's four kids, well Niko is now 20 yrs old and Stacia 18 while the six foot twins are 12, are visiting for a few days soon. Loudness, lots of Greek eating, laughter and tears will take over our hearts and household. My love to you and Karen for the holidays that you celebrate.
Love you always,
Hi Hilda, love you too. Can't believe how old George's kids are now, I'm sure wherever he is he's looking on with pride. I know, what a stupid platitude. George was such a vibrant soul, though, that it's hard to imagine he simply ceased to exist. I prefer to think that he moved on to another plane or dimension. Hey, we live in a Multiverse with at least 11 dimensions. I'm sure George's hiding out somewhere out there…Delete
The twins are 6 feet tall? Geez, what are you putting in the Moussaka?
Have a wonderful holiday, and let's talk soon…
As vile as "creeping paralysis" sounds, it doesn't really capture the total horrific picture. Brain disease - that'll quiet a room. I'm a member of the cult of the jumping cat too. Maybe it's a symptom. Everything else is.ReplyDelete
Yes, Louise, I agree, creeping paralysis doesn't capture the horrific whole of this disease. I'm not sure there are words that would suffice. It's really one of the cruelest illnesses possible, and the fact that it doesn't have the manners to put an end to its victims suffering when it's through screwing with them is truly abhorrent. I know that might sound morbid, but having seen people in the late stages of progressive MS, when the paralysis has crept so far as to completely overwhelm them, is to see a living nightmare.Delete
Unfortunately, the general public really has no idea that things can get that bad. The mass media and the NMSS have done a wonderful job in making MS seem like a controllable disease. More light needs to be shown on the true horrors of the disease, perhaps that would spur a real search for cures and not the Band-Aids that are up for offer now. And those of us with progressive MS don't even get the Band-Aids…
This is my favorite part of the obituary: "He was smart, lively, and amusing, a great contrast to the pompous Mr. Hoppin, by whom he was succeeded." Ha!ReplyDelete
Yes, I loved that part also. Either Mr. Hoppen was also deceased, or the author just didn't give a crap. I suspect it was the latter, and I hope the pompous Mr. Hoppen blew a fuse when he read the obituary… Can't stand pomposity.Delete
Thank you for this post, I was going to reply with something about your 'anti fungal' meds being contrary to what I believe that you really are a fun guy (sorry had to do it) however since today is day 103 for my wife to be hospilitized since June 30th with leukemia I need a bit of 'funny'. My wife is also is on antinfungals and a bunch of other meds to try to help kill this beast, I never thought that my MS would take a 'back seat' to any other medical issue however sadly I found that leukemia 'trumps' MS.
Please keep up the great work you have been doing with this blog, it's much appreciated!
Thanks for taking the time to post a comment. Hoping that things are going well with your wife's treatment, and that the holidays bring you guys some needed peace and respite. Please know that my thoughts are with you…
Very well written!!! MS'er from Cape Town, South Africa. Would like to follow your blog, YvetteReplyDelete
Hi Yvette, thanks for your kind words. You can follow the blog by signing up in the "followers" box in the left column of this blog page. You can also sign up to get the blog post sent to you via email, also by submitting your email address in one of the widgets on the left. Please let me know if you have problems with this, just shoot me an email at WheelchairKamikaze@Gmail.com…Delete
Thank you for being so candid about your experiences. I am helping my sister who has SPMS research HSCT and that is how I came to learn of your posts. I have been following you for the past several months and have read many of your posts. They are very enlightening. I can only imagine that as daunting as all of this is that it is somewhat cathartic to write out your experiences. I can tell you that it is very helpful to those of us who have family and friends with similar situations to help us understand and provide support. I am sure it also helps tremendously for those experiencing what you are experiencing to know that they are not alone. Most do not have the wonderful gift that you have of being able to express themselves so eloquently. Wishing the best for you and your family.ReplyDelete
Thank you, and please send my regards to your sister. Writing the blog is very cathartic, and the fact that my scribblings seem to be of at least some help to other folks traveling down this bumpy road give some method to the madness of my illness. Wishing you and your sister the best…Delete
Powerful as always. I've had this disease for 18 years, and tomorrow I am meeting with my wheelchair vendor about "alternative means of driving" my power chair. Seems my left hand no longer feels like bearing the responsibility of being my only working body part, so I'm sad to say I will be learning to drive with my lip or my cheek tomorrow. I don't think I have ever gone more than six months without experiencing some type of progression, but for some reason the level of shock and disgust doesn't diminish with time. Anyway, thank you for giving a voice to creeping paralysis. Kelly and I still have your coat by the way, I fear we are sinking into scoundrel territory but her schedule has been unrelenting. Forgive me please.ReplyDelete
Kate, please, no worries about the jacket. If you guys ever get to it, great, if not, that's fine too. It should certainly rank very low on your list of priorities.Delete
Very sorry to hear of your continued progression, and I completely understand that the level of shock and disgust never diminishes. Even though on an intellectual level I know not to expect the progression of my disabilities to stop, barring some kind of nearly miraculous intervention, on an emotional level the mind tries its mightiest to reject projections of the future that include this never-ending assault and loss its accompanying of ability. It's hard to think of a crueler disease, although there are certainly others that are more immediately tragic and some much more gruesome, this slow-motion whittling away of self is almost incomprehensible, and can poke holes in the staunchest of well hewn psychological defenses.
I hope your meeting with the wheelchair vendor went well, and I admire you for summoning the will to tackle this latest setback. I know too that part of that summoning includes the fact that we have very little choice in the matter.
Wishing you guys a very happy holiday season, and some comfort and serenity amidst the siege of Creeping Paralysis. This ogre may eventually succeed in conquering your body, but your humanity, never…
I also have Creeping Paralysis; since 1982 - right side first and more recently left. Maybe that's 'cause I live in the southern hemisphere �� I love your Oz MSS badge - must be old as we haven't had imperial currency since 1966. An alternative to CP - 'Death in Slow Motion'�� Cheers!
So called Multiple Sclerosis (MS) is an UNPROVEN autoimmune THEORY based solely on SYMPTOMS !ReplyDelete
Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a medically recognized medical condition, scientifically established to role/part/ in 42 Neurological afflictions and so called Multiple Sclerosis (MS) !
Each person diagnosed with MS has symptoms unique to oneself as much a circulatory system is individual as a fingerprint ! #CCSVI
Many feel and know, MS is a mechanical issue, no drug,treatment or therapy can solely rectify ! #CCSVI
Creeping paralysis is an interesting analogy considering the hypothesized triggers for MS are the Herpes family of viruses....and of course, Herpes means "to creep" in greekReplyDelete