Wednesday, December 14, 2011

You Can't Be Too Strong

A strongman forearm.

One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.

Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.

Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.

I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.

Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!

The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.

We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.

In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it  through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?

Honestly, you can't be too strong…

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  1. "what I thought was strength was actually a weakness"

    Ah, so true, so true. The serenity to accept the things that cannot be changed cannot be overestimated.

    Also, did you read about the Novartis death? Of course you did. You are the master of all news that is MS. For those that didn't:

  2. As always your posts are very well done and make us all rethink our attitude toward this disease.
    Has your friend that struggles to drive considered hand controls for his car. I was doing thev same thing, using my hand to lift my leg between petals. My neuro prescribed hand controls. I've been using them for 8 years and it makes driving less exhausting. I know the rules for hand controls have become more stringent but they are great.

  3. So very true, Wheelchair Kam. All these possible causal deficients or irritants to investigate, often out of pocket. I'm often mad, overwhelmed, or cynical. How we all relate to all these issues becomes the issue....your writing strenghtens me, hope it does the same for you. Toni

  4. man your ms friends sound like a bunch of headcases! I mean get a life....


  5. On the berating oneself for perceived lack of toughness, I hear you. I count myself in the group who devalues my own life’s accomplishments thinking, “If only I could have tried a little harder I could’ve finished.” Then I perpetuate the problem kicking it down the road saying I will succeed tomorrow only to feel even worse about not having the energy the following night either. The worst part comes with something like exercise where I know a habit of working out will give me more energy most nights, but getting to that point? So instead I’ll just feel guilty for not working out and even more so with every snack.

    I still find the biggest test of strength still remains the strength which only comes from confidence in oneself. When we can no longer do all we used to be able is hard. When others perceive us less useful is harder still. However, by far the hardest, is when we can no longer see that which we want to be as possible when we look in the mirror. It’s then we most need support while we or somebody else runs to get the patch for the leaky piñata keeping our guts from the spilling to the grass.

    On the headcase comment, very punny. ;-)

  6. Hi Marc,

    Your writing continues to amaze me. You truly give me strength when I'm about to run out.

    Thanks a lot for allowing me to be "weak", if only for a moment or two. I am forever looking for serenity in my fight against illness, depression, and anxiety. It's very illusive, but this post has brought me closer, even if just a little bit.

    On a brighter note, my best friend of 25 years who is in a wheelchair(and can't user his legs), used to drive his car around with a tennis racket while waiting for the hand controls to come in the mail. Somehow I was OK with that and would jump in the car with him :) He was never one to worry about the small stuff, so he just did what he needed to do. I look back at that and realize that's crazy and we were probably much closer to crashing than I could ever imagine :)

    Thanks again for your source of strength, much appreciated!


  7. For me, I've been humbled by dealing with the dunderhead institutions -- medical offices, insurance, and disability authorities. Prior to my journey, I would have thought that since I'm organized and persistent I'd be able to drill through the BS. Talk about being beaten senseless by senseless information and relentless, continual errors!

    My condition, that I went from climbing mountains to being, uh, feeble with a progressive disease with an unknown timeline, having lost my career, etc, is discouraging to say the least. But I can deal. My interactions with the medical / insurance / disability establishments, are exponentially beyond discouraging and require the bigger bootstraps of the two.


  8. This morning, a white fog lingers over the canal. A V-shaped squadron of river gulls swim on the spot against the current, facing the lock. They are waiting. Chatting. Ah today is Sunday, boats will have to wait for the lock to open and they always throw stuff overboard.
    But it's only 8 o'clock and December, boats are staying put for another year. Patience, patience..

  9. Anonymous said...

    man your ms friends sound like a bunch of headcases! I mean get a life....


    Anonymous, how kind and thoughtful! Best of luck with your next bout with adversity.

  10. My strongest day was the day that I bowed to the level of my disability and accepted the help of care aids to assist me with my ADLs. It has improved my life so much that I've had people, sometimes, envy what I can do. How ironic.

  11. Katja
    I was being a little sarcastic. Im am wheelchair bound suffering from an agressive form of ms. I love
    Marc and humor is all i have. Please didnt mean offense��

  12. Apology accepted (I consider myself one of Marc's ms friends, too). Thanks for the explanation.

  13. In a perhaps unintentional way, and with perhaps unintentional consequences, this post is what inspired my poem for today, "Fessing Up".

    Can we just admit
    how freakin scared we can get
    when MS acts up?

    I will raise my hand.
    It scares the crap out of me,
    I don’t mind saying.

    Yeah, I am brave, sure.
    I do make the best of it,
    but it gets scary.

    As always, thanks.


  14. Marc, I thought you might like to know that today there's huge news about MS: a paper in the Quarterly Review of Biology, "Multiple Sclerosis is Not a Disease of the Immune System," by Dr. Angelique Corthals.

    It argues that MS isn't an autoimmune problem at all: it's a metabolic disorder, not unlike atherosclerosis.

    Corthals' lab at John Jay has a press release here.

    But Corthals is answering questions live on my blog--where I've posted a more detailed précis of the science.

    Thanks for all the work you do, and your honesty about living with MS. I was diagnosed in 1993 and this paper is the first, the very first, I've seen with an elegant, convincing, coherent explanation of the pathogenesis and etiology of the disease. It's a true paradigm shift.

  15. Addendum to that comment: I've just heard that a 'typesetter' delay (??!) means the journal won't go live until Friday. But I have a copy of the paper that I'm permitted to distribute by email. I'd be happy to do that.