i thought today, listening to annoying customers on the phone, that ms really gives a new meaning to “working my last good nerve.” i think i only have one or two good nerves left.

a very cool design, only lacking in hand-pedals.

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whatever else you might think of wal-wart- and i’m told there are people who love them – they are apparently not as wholly evil as i once thought. i was one of the people who considered them to be the lynch-pin of the axis of evil, and i did my best to avoid them. but, where i live, if one wants to buy, for instance, underwear, where once there were several places to shop, there now is nowhere but wal-mart within a 45 minute drive. even though probably kmart and other big, cheapo box stores got their underwear from the same factory in malaysia as wal-mart, it was nice to have a choice. now, those other stores are all gone, and there is just wal-mart. well known for their anti-union, low-paying, no-insurance-providing practices, i felt like i was betraying my principles by stepping foot in the front door (and doing my best to ignore their sticker-weilding greeters).

while the way they treat their employees has, as far as i know, not changed, i was a bit startled to discover that they are purveyors of a lot of organic food. in the film “food, inc.” (mentioned in my last post), the owner of stonyfeild farms, a major player in the organic yogurt market, said that he happily sells his product to wal-mart and that every million dollar sale to them means so many thousands of pounds of pesticides and bovine growth hormones and other assorted nasty chemicals removed from the environment. he said his fellow yogurt makers are horrified that he sells to wal-mart, but he seemed pretty pleased with the deal. the image in the film of the shelves in the store with the “organic” tag, and rows of stonyfeild farms products was impressive. to hear some big-wig in the wal-mart empire saying they had committed to only selling no-growth-hormone milk, and other organic foods,  because that was what their customers demanded was enough to get my wife to drive the extra 20 minutes to the nearest wal-mart with a supermarket to see for herself what it was all about.

and sure enough, she came home with organic pork, chicken, produce and the like. she was very impressed that these things could be had – and at the same price she would have paid at the “regular” supermarket for the same items.

now, i am still concerned with the way wal-mart treats it’s employees and the local economy. but i won’t go into a rant about that here – refer to “wal-mart watch” for that half of the story. don’t get me started!

apparently, if one only goes in to purchase organic foods, one will come away pleasantly surprised. i’m just sorry that making those purchases supports the company as a whole, a company with a pretty poor record for treating employees and for how it impacts local economies. it might be worth the effort to locate other non-evil-empire purveyors of organic foods. but at the very least, wal-mart ( and i can’t believe i am writing this!) is to be commended on their support of the organic food industry.

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i watched this film, food, inc., last night, and while there was nothing in it that i didn’t really know, to see it all pulled together in a well produced movie was very moving. to realize that it is (probably)  impossible to eat a healthy diet that is not influenced by, owned by or controlled by one of a few major corporations was stunning. not too long ago, 30% of meat production was controlled by 3 or 4 corporations. now it is something like 70%. if you believe that you are what you eat (and how can you argue against that?), and though it might ruin your holiday feasting, this is an important movie that you have to see. i won’t go on and on listing facts and quotes – just rent the dvd or go see it in a theater. this is important stuff.

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i don’t know who came up with the term “black friday,” for the day after thanksgiving – which is traditionally the biggest shopping day of the year – but here it comes again. and before we all get swept up in the holiday madness, i wanted to offer a few thoughts.

i read a short article in “adbusters” suggesting that we could take a page from islam in our approach to the frenzy of the holiday season, and the all-too common crash that comes in january when it’s all over. the author writes, “once the cheer that i’ve been mainlining since he day after thanksgiving dries up, i’m left with an emptiness i can’t describe.” she asks what it would be like if we introduce an element or two from ramadan into our christmas excess? muslums, during the daylight hours, refrain from eating, drinking and general excess for the month of ramadan. the author offers that fasting is an excercise that, like meditation, can leave one feeling more connected and whole. at the very least, it will leave us feeling less bloated and can go a long way toward alleviating that vague feeling of guilt from our month of overindulgence. i’m going to give it a try, in a modified way – setting aside my hours at work (the few i have left) for fasting. if for no other reason than just to see how it feels. (adbusters also suggest turning black friday into “buy nothing day.”)

i also find that, when people ask what i want for christmas, what comes to mind is how much stuff i already have all around me – closet full of clothes i don’t really wear, shelves of books i’ve already read, and all manner of knick-knacks that seem to crowd my life. we americans think little of the piles of stuff we surround ourselves with, when most people in the world have so little. without moralizing any more, i’d like to suggest two gift giving ideas for the people in your life who, like me, already have too much stuff.

one is the give card, a visa card that you can load up with $$, but which the recipient, upon activation, chooses from a long list of charitable organizations to donate $5 or more to from the amount on the card. then they can spend the rest on themselves if they want, or give it all away. i’m sure visa makes a few $$ off the deal, but it seems like a good idea to me.

then there is changing the present, which allows you, the gift giver, to choose from a long list of worthy causes – mostly people who have so much less than we do – and make a donation in the name of your recipient.

granted, we could find worthy causes – probably in our own backyards – on our own, but these two sites make it easy and quick to give a little something to someone who really needs it. it is all too easy to pass up the charitable giving in the face of how busy we all get – these two sites give us no excuses.

i have no intension of raining on anyone’s parade and dampening anyone’s turkey – we should enjoy the bounty and the love of family and friends around us. i would just suggest that we all set a little time and energy aside for others not as fortunate.

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after some recent changes to my overall health, alison and i decided it was time for me to leave the workforce. this is a move we knew was coming eventually, as it often does for people with ms. for me, it has become clear that time is now. a very good friend of mine who has faced a similar decision told me it is better to leave before one HAS to, so that the departure can be on one’s own terms and can be carried out with a bit more dignity.

i gave my notice today, (11/16) telling my employer that i would stay on through the holiday season, leaving cuddledown at the end of the year. i’ve been with this company for almost ten years, and have been treated with respect and honesty. i’ve worked in several departments within the company, and all of my supervisors have been very accommodating to my changing needs. it will be strange not to go into the office in 2010. alison and i now begin sifting through short and long term disability options, social security, insurance, and how to pare down our lavish lifestyle (like selling one of our 4 cars). it will be a challenge, at least in the short term, but one i think we are up to. my expectation is that, ms being what it is, we will be faced with some new health challenges as time goes on, but that some of my current issues will be eased to one degree or another by the removal of the stress of going in to work every day.

i do have a few projects that i will be pursuing on my own as sources of income – developing and marketing my skills as a “virtual assistant,” taking on some of the more  mundane tasks that professionals like realtors, lawyers, and the like, have to deal with (creating and maintaining web sites and blogs, creating peripheral marketing materials, etc.) freeing them to do what they do best. on the side, i hope to be able to recover the energy to pursue my passion for photography.

in any case, i expect to have more energy to pursue some of the things that have fallen by the wayside in the past few years, and i am very excited by the prospect of sorting out how to market my skills as a virtual assistant, and get back to living my life (a little more) on my terms.

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isn’t this what the rest of us call fampridine, or 4-ap, and which some of us have been taking for months, if not more? tart it up with a new name, get the fda involved, and before long, someone (Acorda Therapeutics) is going to be making a lot of money off this. “the drug — tentatively named Ampriva — would be the first to improve nervous system function in people suffering from the devastating disease.” not true. fampridine has been around for years(?) this ampriva is NOT the first. shameful. no wonder out healthcare system is in such a shambles.

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i used to joke with people who came to our house for dinner and had a fabulous meal, almost always prepared by my wife alison (she cooked, i cleaned), that i had married well. it was true in more ways than just the dinner parties – she has always been the organizer of vacations, the balancer of the checkbook, and generally the head-chief-boss (as my son used to say) of the family. that, in addition to her cheerful temperament and astonishing good looks, has always made me feel like the luckiest man on the planet.

now, almost ten years into my ms diagnosis, and as i become gradually more disabled – or should i say less able to do the things i used to do – she has stepped up her game. it seems every day there is another thing i cannot do – carry my laundry basket upstairs, haul wood for the fireplace up from the basement, vacuum the dog hair off the carpet or fix the bathroom faucet (which she just did). she fills in where i can’t go with a smile and as much understanding as an observer can have of my feelings about disability. i thank her every day, and we’ve had a few conversations about how one of the things i fret over is being useless and a burden, and that she has never made me feel that way.

so, suffice to say, she is a saint. and i swear i am not exaggerating (or bragging). after our latest conversation about how much i appreciate every little thing she does for me, it started to bug me that just me thanking her was not enough. but what can i possibly do, with my limitations, to perhaps begin to pay her back? a day at the spa, dinner out, or a borders gift certificate would all be appreciated, but they are nowhere near what i feel i need to do for her. i’ve been thinking it over for a while, and i am stumped. she was (and i hope still is) planing to go to amsterdam with a friend (she has a close business associate who lives there), and at first i was a little upset that she invited the friend and not me as her companion. but now i am all in favor. she deserves it, she deserves time away from me (god knows!) and i think it will be great for her to go on this adventure. but as great as it will be, it’s not something i am doing for her, or giving her.

maybe in the end, just my making an effort to remain as healthy as i can for as long as i can will be all i can really do. that and thank my lucky stars that, somehow all those years ago, i was blessed to find a saint who would consent to marry me. i hope you are all as lucky as i am.

(any suggestions on how to thank a saint would be appreciated, by the way!)

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a good friend of mine  told me that when her father had a TIA, before his massive stroke, he commented that god had given him  little push, and not the big shove he  could have given him. i got a little understanding of that concept the other day when i got my foot tangled in the accelerator/brake of my car, and found myself careening in reverse completely out of control. fortunately i was in a parking lot, and i am not clear on the details of how i got from speeding out of control in reverse to careening out of control in drive, out of the parking lot, across what is normally a very busy street and into another parking lot where i managed to come to a stop and got out to survey the damage. terrifying on reflection. minimal damage to my  car, but when i returned to the scene of the crime, i discovered that i had smashed into another car, taking out his front quarter panel, took out a cedar fence and knocked over a propane tank, fortunately not exploding it. a very nice cop came by to sort it all out for us – everyone else involved was very understanding (i was the only human involved in all the crashing around, and aside from a few aches that showed up here and there over the next few days, i was fine. insurance info was exchanged- it was all very civilized – and we went our separate ways.

could have been a lot worse. my wake up call was that it was time to move from foot controls to hand controls – which are on order.  i am a little doubtful about them, but we shall see. for now, i am not driving (got to hitch ride in a mini with a rather hot blonde today, so it’s not all bad). i don’t know, it seems this multiple sclerosis business is starting to get expensive. i just ordered a bar for my bed which will make it possible for me to get out of it on my own, and these hand controls are not cheap. not sure how much insurance will pay for. so as i’ve said before, it is hard to see my earning potential decrease while the cost of my daily life keeps increasing. somehow doesn’t seem fair.

but  as one of my tai chi instructors, who was bald, said, if life were fair, he would not be bald. for what that is worth.

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i have the fantasy of living someplace with no stress, quiet, space, comfort. eating very simply and cleanly – fruit, vegetables, brown rice, maybe a toasted bagel every now and then. sleeping when i am sleepy, getting up when i am not sleepy. and no meds. allow symptoms to be what they are, to play themselves out, to leave them alone and see where they go. i have accepted the ethos of leaping to medicate any symptom, any function of my body that is deemed by some doctor or other – or me – to be in need of correcting or changing. that goes for depression, it goes for my leg cramps, it goes for my blood pressure, it goes for headaches. what would happen if i just let the muscle cramps be, and stopped filling myself with drugs that often (but not always) make the cramps bearable and allow me to sleep, but also contribute to my difficulty with walking, with balance and with coordination. yes, i have to sleep at night so that i can go to work in the morning. but what if i could just let the cramps alone, what if i didn’t have to get up and go to work in the morning?

i guess what i really want to know is what else are these meds doing to me beyond dealing with, however imperfectly, the reasons i take them? what else does klonapin do to me besides (sometimes, if i take enough) make my leg muscles relax? i still have a very hard time getting comfortable in bed – i can get comfortable enough to sleep, if i am tired enough – and in the morning, it still feels like i have been climbing a mountain all night. and how would i feel if i let what drugs i have in me now to run their course. i wonder how much of how i live contributes to how i feel, and then  take drugs to make me not feel that way.

and if i simplified my life as close as i could to its basics, would those symptoms go away?

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join my son in the fight against cancer:

if i can figure out how to do it, i’ll start a “beards vs ms” campaign.Share this Post