Hot Electric Quicksand #10

Hey everybody, how is ya?

Just got back from many days out in the Nevada desert, including a trip up to Idaho and around to Utah and back. A timely and ‘just what the doctor ordered’ journey on many fronts, yet for all the vast enjoyment and rejuvenation both my wife and I experienced, it was as if, for the entire time, we had a CNN helicopter and Defense Department satellite hovering about us. Unbelievable…

Through an act of divine intervention, or perhaps pure coincidence, we left days ago right as Northern Nevada/Idaho was about to become THE world-wide target of attention. How do these things conspire to happen like that? Yes, it is a long story and I’ll get to some or even all of it, and pardon me if I roam all over but let me catch my breath a bit and take a look at where I’ve been and am at now.

Looks like the MRSA is responding to the turmeric, along with baking soda/citrate combination. I have had no further explosions of boils, though they are continuing to appear; thankfully, they die out in a couple days before surfacing and oozing. I’m still worried about continually re-infecting myself, but the misery I endured for 9 months has abated; whew! My wound is still there, but Pia is using unrefined honey poultices with saline, and every few days some golden seal directly on the wound, and it’s improving; not sealed yet, but getting there. The ‘mass on my ass’ is really decreasing, though oozing a bit, too. Still, and even with being on the road almost every day, sleeping in weird, shitty beds and eating different foods each day, I am feeling better and some degree of my old energy is returning.

Alright, are you sick of reading about my physical issues? Want more detail on how the abscesses look, smell, feel, or have you had enough? Let’s assume you all have an appropriate picture, and I can move on.

(Wait, before moving on, let me add that MRSA, and in my case, community-acquired MRSA, is dropping fellow plegics like flies. Out in Elko, after we visited Carolyn Piercy’s grave, we went to lunch in town and, as we were taking our seats, a young man walked up to me, “Could I ask you something?” “Sure.” “Do you ever get huge pimples on your body? My mother has been sick with them for a year now, and the antibiotics aren’t working; I saw you and thought I’d ask, since my mom and you are both in wheelchairs.” “She paralyzed?” “Yeah, 13 years . Our neighbor had the same things as my mom, and he died over Christmas when it went into his blood.” Ah yes, sepsis, my old acquaintance. I took a few minutes and did what I could to outline my odyssey and what I’ve found now to be working, and I had Pia go to the car and grab a bag of turmeric for his mom; on me. Hope it helps. This is one vicious little bastard, people; don’t let your guard down or fool yourself, if you come down with boils, into thinking it’ll either go away on its own, or a few pills will do the trick. Wrong on both assumptions.)

At any rate, let me take an overview of some of the highlights from our 17 days wandering about:

Hot Electric Quicksand #9

I live in one of the most beautiful areas of Northern California, the secluded Butte Valley in the eastern foothills of Butte County near Butte college. The area is named for its, well, monumental buttes; massive, decaying lava caps however many millions years old, they ring the valley and, from where my home sits, give one the feeling of looking out, especially at night, at a vast, calm sea. We literally live below Paradise, and are blessed with four very distinct seasons, our spring and fall generally the most pleasant, though this summer has been inordinately cool and breezy.

Today, under cool and breezy skies, we’re having a farewell get-together for my oldest son, Priam, who leaves in a few days for a year in Chile with the Rotary Club’s Foreign Exchange Program. Friends and family are gathering as I pen this, lots of preparations and busying about, Brasilian barbeque on the sizzle (ya ever eaten Brasilian churrasca? A little sea salt, garlic, then onto the wood-charcoal grill it goes; de-lectable!), and a bit of ennui mixed with excitement for my little boy about to take off for what we hope is a grandiose adventure. He’s already a world-traveler, been globe-trotting since he was 2, and I think I’m more nervous than he is! I ask him about the language being a great challenge, and it’s, “Ah, don’t worry, Chief, I got it,” then one of my wife’s Latin friends ambles by and they jibe each other in relaxed Spanish, and I can see, despite my concerns, that he does, indeed, got it.

Despite my documented health struggles which have plagued me since, well, last October, my wife and I have decided, once Priam is safely aboard his plane, to take a bit of a break from our routine. We’ve been going hard at it for quite some time; my wife, since graduating nursing school last year and passing her boards, has been working non-stop and, as many of you with direct or sympathetic experience with nursing can attest, ya burnout kinda fast in the high-stress world of nursing. She needs a break, and I’ve determined to give it to her. On my end, I’ve sliced away the ambitious fall schedule I’d set for myself, deciding to take a change in course to restore my health, and perspective. Next year is a critical political year, and if I’m going to participate, I can’t do it on my death-bed; better get well first. Besides, I’ve made the circuit (Oregon, Nevada, Nor Cal) to the various facilities and groups enough now so they should be able to exist without me (!). In truth, I’m also tiring of putting a ton of effort into something I’m not sure many people appreciate, though feel entitled to criticize. You move on when you feel you’re getting stale; at least I do…

At any rate, we’re heading east, Interstate 80 calling. Gonna hold up in Reno for a day or two, see a couple old beat-up dirt bikers, head up to Virginia City (my wife has always loved VC; nothing like it anywhere, especially Brasil) then make a spiritual pilgrimage to Nightengale, near Lovelock, where I was injured. We’ll burn some sage, shove some sand down my pants and visit with my old and dear friend, the Nevada desert.

Yeah, time again for a visit. I cannot blame the desert for my injury, I have only known the most extraordinary times out on that scape. Since the early 70’s, I’ve been out there investigating old ghost towns and mining camps with my dad and family, before I began twisting throttles and losing big as a purported ’racer’. I have never known a moment’s fear out in the desert (or the mountains, truthfully), even when broken down and so-called ‘lost’. Nah, I’ve never been lost out on the desert; only found, have I, the wilds where I feel safest.

Damn cities and streets, though, is where I become alarmed…

Once we’ve paid homage, we’ll continue east, maybe a few hours at a time, who knows? We have no agenda, no place we have to be, other than eventually back home for my youngest son’s first high school football game (he’ll be staying with Grandpa for awhile, and it was he who suggested we take some time off, “You should go out to Wells and that area, you always really loved it, I remember,” he’d said, and damn, he was on it, Wells and the high desert mountains one of my favorites anywhere). Probably head down to Elko and smoke a bowl over Carolyn’s ashes, buy some sheepherder’s bread, take in some high-desert organic, sage-tinted free-roam beef, and feel again how blessed we are to live in a country with such splendor.

There are so many places I once called mine yet haven’t seen in almost 8 years, so we’ll check a few spots out, take in my beloved Nevada, and see what comes. Can’t say much beyond that; oh, the MRSA wound is still there, gradually healing, and the boils cluster is still there, gradually diminishing, and yeah, there’s been a few new ones appearing, dismaying me but not exploding, so maybe the turmeric is working. Not gonna endanger myself with hours at the heel and re-opening sores and all that, but we are gonna take off and see where Boreas blows us.

Until then, take care, all!

(Note: My book, ‘Scouring the globe for a cure: a disabled man’s experiences with stem cell treatment’
can be purchased at the following Web address:
www.booklocker.com/books/2857.html)

Hot Electric Quicksand #8

I went outside the other day late in the afternoon to enjoy the delta breezes coming up the valley, cooling the upper Sacramento Valley inordinately (70’s) and allowing everybody, including my ancient yellow lab, Ginger, a break from the 110’s of August.  Perusing my ‘estate’, I happened to glance upon a neglected corner of our orchard and was literally stunned by what I saw.

Earlier in April, a freak wind storm had blown over a large, old digger pine tree; the pine had crashed into the orchard and killed or maimed most of our fruit trees. Owing to my recent health spell, and the…let’s just say relaxed nature of my sons’ chore schedules, the pine has remained where it fell, awaiting cooler weather and a few zaps of the chainsaw. Since my kids were out and away doing more important things than chores (the mall, girlfriends, vide-ating), the pine was in no danger from 2-stroke molestation, but what caught my eyes was what was sticking up through the drying branches of that digger: golden and crimson pears, clusters of ‘em!

“My word, I thought you’d died,”  I said as I rolled her way. Nope, this scrawny, little neglected and left for dead pear tree had somehow survived a killing blow and found a way to keep on growing, right up through the pine’s enormous, dense branch network, and to produce fruit. Talk about stressing a plant, geez!

I plucked a fat, deep-gold pear from a limb and took a bite. What the…? A-mazing taste, bursting with flavor, juices exploding down my chin, and not a bug or bird mark to be seen on any of ‘em. Seems the bugs, birds and I had all figured the tree was a goner, but no, not so.

I sat there entwined in tree branches, pine and pear scent filling my nose, gorging myself on warm, ripe fruit until I could gorge no more. Later, my wife and kids happily stripped the little pear tree of her fruit, my youngest son, tough, football-playing 14 year old, saying, “Hey, thanks, little tree, you did well, and you shoulda been dead.”

‘Shoulda been dead’, yeah but it wasn’t, and having survived, it had gone on to produce something wonderful, in spite of its struggles.

I found that a fitting metaphor for the struggles we plegics go through every moment of our day, the great ‘stress test’ which is paralysis survival. How many of us ‘shoulda been dead’ but somehow lived (thanks to modern surgeries, treatments, antibiotics and a host of whiz-bang acute therapies) and have gone on to produce rich, delicious fruit? How many of us, after our catastrophes and the inevitable pronouncements from the medical staff, “You will be paralyzed for life, and there is no cure,” simply accept the proclamation and fold our branches away and just don’t even try to continue to produce?

Hot Electric Quicksand #7

Hello, friends and enemies, vgrafen at the helm…kinda.

The Chris and Dana Reeve Paralysis Act is pickin’ up steam, folks, yet until it’s passed, we still need to ramp up the pressure on Congress and let ‘em know we need this bill, now! Make your phone calls and emails, but also write a letter to the editor of your local paper and spread the word amongst the masses of the importance of this bill. The vast majority of the public either does or will support this cause, but at present, are largely ignorant, and it is our job to defeat ignorance and lead, correct?

For my part, I’ve been hammerin’ my local Representative, Wally Herger, and I’m certain he’s sick of hearing my voice-mails and reading redundant emails, but I could care less! Sure I’m a pain in the ass, but PARALYSIS is an even bigger pain and, unlike my electronic pestering, which is easily deleted , ain’t nuttin’ at present to delete the shit I’m going through lately…
~
Bear with me, please, and forgive a beat-up off-roader this indulgence, but I’m struggling through another health setback: yep, MRSA abscesses have re-emerged, and with a vengeance. Sudden explosion Thursday night has again rocked my world; as if that isn’t bad enough, there’ll be no Hot August Nights up in Reno for the kid, sad to say.

For the past ten days, I have been attempting to use an alternative method to fight this damnable infection, rather than simply scouring my system with antibiotics and killing everything in sight. Been using large amounts of turmeric, then added baking soda and lime juice along with a pinch of sea salt thrice daily, trying to lower my blood’s ph. Seems my system, and probably like many of you, is acidic, owing mostly to my coffee intake, and MRSA flourishes in acidic environments. Hospitals, for instance, use acid-based topical antiseptics, which don’t really kill the bug. In my case, 9 months of antibiotic use has so weakened my system that the moment I’ve finished with the last drug, boom! up crops another abscess, or as we found Thursday, a cluster of them.

Hot Electric Quicksand #6

Greetings from the sickbed! Yep, beat up ‘ol v is…sure beat up lately…

First the important news:

Sen. Tom Harkin (D/Iowa) has re-introduced the Chris and Dana Reeve Paralysis Act (CDRPA) in Congress, and has this to say of the act’s importance:

“There is no time to waste. Young soldiers are returning from Iraq with spinal cord injuries, facing a lifetime of disability. Some two million Americans are living with paralysis of the arms or legs. Hundreds of thousands are living with multiple sclerosis. They cannot wait. I can think of no better way to honor Chris and Dana’s memory than for Congress to pass this legislation.”

Amen, brother! Now, this act has nothing to do with funding secret embryonic stem cell research, and everything to do about NIH-funded paralysis research, including a clinical trial network and various quality-of-life improvements for plegics. It is long overdue, thus I urge everyone who reads this blog to quickly call your Senators and Representatives and insist they sign on to this bill. We need it now, and it’s the right thing to do.

Make a call, write a letter or email, and help get the CDRPA passed now!!!!!
~
I will be taking a helluva lot of time off this month, due to flat-out exhaustion and my health condition (see below). I have canceled all August speeches/appearances, and am going to spend some time sleeping and rebuilding. I’m also headed up to Reno for Hot August Nights, where I’ll be hanging out with a few sheet metal beauties, including a ‘56 Vette and the nicest ‘67 Camaro I’ve ever been around.

Aside from that, I’m chillin’, layin’ low and lip-suckin’ my wife.

Why the pull-back in activity?

Well, I’m still trying to heal from my MRSA/abscess cycle, which has left a wound (now a pressure sore) on my ass that won’t stop draining; this I gotta close up, or face worse complications.

I finished my last Septra and started in on some alternative medicine therapy aimed at removing the leftover MRSA toxins from the body: 3 teaspoons 3 times a day of Turmeric, the spice from India. Overwhelming anecdotal evidence suggests Turmeric really helps, so I have begun its use and will report as things progress. I’m damn hopeful I don’t ‘boil up’ again, as my body is really weakened by the 9 months of antibiotics, abscesses, and exhaustion.

Thus weakened, I awoke Sunday morning…to a bladder infection! Yea, another round of antibiotics (Levaquin), along with impatience and irritability!

I’ll get through it and I’ll heal; just can’t say when…
~
Things are already getting ugly for the remaining members of the Nor Cal SCI Group; seems their checkbook is burning a hole in their pockets, yet I’m the bad guy!

Yeah, I was told, in an email over the weekend, to “…keep your fat mouth shut about our internal activities, v, you have no business telling people…we are squabbling. Carolyn left everything in place and wanted me and — to lead the group AND handle the money, and when you write about our problems, you undermine what we’re doing.”

Je-sus H, blame me for calling attention to you girls wanting to take the money Carolyn squirreled away and lavish yourselves with a ‘fact-finding mission’ to Miami in September; sure, you’ll visit the Miami Project…and the South Beach beaches and the clubs and the restaurants…

And I wasn’t gonna say a thing, either, but my friend’s ashes are not even settled back on the ground and the infighting and bad blood Carolyn knew would come yet perversely didn’t make contingencies to avoid  has erupted, so what do I do, sit back and say nothing? This WAS a group of single-minded people bent on one goal: funding SCI research.

Now, it’s all about…shoot me for saying this, but…shopping.

Alright, I’ve said it and I will now shut my fat mouth and leave off from mentioning the NCSCI Group in print again. I’m saddened but take heart in knowing that C Piercy probably wanted it to blow up like this, knew it would go this way, and thus decided to just let it all fizzle out instead of  trying to keep it going.

This is the fetid side of organizations with ostensible altruistic goals who enjoy considerable success year after year, yet when they find themselves suddenly leaderless, and thus without the strong vision of their founder, turn the group’s energy to petty bickering and lose sight of their mission. It’s been brewing on the back burner for months, everybody scrambling to position themselves in the wake of her cancer, but after her death, shit just effing hit the fan, and no time wasted, gotta go spend that money!

The old adage, ‘you take out the head and the body quickly dies’ appears true in this case…

Feel free to object, ———-, but do so publicly and, preferably, here. Otherwise and as stated, I am now…done!
~
I’m layin’ down, just zonked, folks, see ya soon!

Hot Electric Quicksand #5

My birthday was this last weekend. I am now 49. I don’t usually enjoy my birthdays, especially since my injury; not for the ‘oh how old I’m becoming’ aspect, but for the inevitable ‘looking back at all that was’ conversations from well-intended friends and family. I always bear up under it, josh a bit and act like I’m fine, but this year was different.

This year I’m not fine.

I’m battling MRSA, the drug-resistant strain of staph that lingers and holds and then explodes and, after a drug barrage, seems to go away, then re-appears in another explosion of pustules and boils. I’ve been battling MRSA since November, and I am tired, tired of the cycle, the antibiotics, the vague fatigue, the endlessness.

Usually the period around my birthday is one of high creativity, and confidence. Fall is just around the corner, my favorite time of year, and I can usually pick up hints of its coming in the afternoon breeze, something sticking in my chest that tells me soon the days will be shorter, the light angled differently, the rains to follow, and with it ducks and duck hunting. I yearn for the days of fall, when once I yearned for an endless summer of recreation and family frolic. Summer always meant a break in my racing routine, when I could heal and spend time camping and playing in the water, making love to my wife at midnight under the Sierra skies at 6000 feet, trail riding with friends…

Now summer is a burden, almost unbearable. I am stuck indoors, hugging the air conditioner, avoiding going outside.

I’ve been quite introspective lately, drawing deep within. I find great comfort in my own thoughts and inner imagery, and it is usually this time of year that I outline what I want to do and achieve for the coming fall/winter, the projects I plan to participate in, trips to take, people I have to see. This year, however, I have no such plans, my outline yet to form.

Perhaps it is yet another bout with despair, and the reminder of my dependency. All that once I did for myself, now I must rely on others to do, especially my wife. Long ago, I released my claims on bloated pride and extreme individuality, yet there are occasional eruptions of independence that…

Oh, I do a great deal, believe me, I am a very active and positive man, but there are days, moments when… I just need a break from this condition…and there is no break from this condition.

Hot Electric Quicksand Post #4

Let me begin this posting by saying I have had a very rough last week, both physically and emotionally. Bear with me while I ‘get it up’ enough to pen something relatively clear and cogent.

Former Surgeon General Richard Carmona’s remarks sure did -or better have!- grabbed a lot of people’s attention when commenting on his tenure as our Chief Medical Officer under Pres. Bush. I won’t over-analyze all his words, but several quotes explode off the page:

” ‘Anything that doesn’t fit into the political appointees’ ideological, theological or political agenda is ignored, marginalized or simply buried.’
Effing sad, folks. Minds already set; no debate forthcoming.

“Early in the administration, when the issue of federal funding for stem cell research arose, Carmona said, he felt he could play an educational role by discussing the latest scientific research. Instead, he said, he was told to “stand down” because the White House already had made a decision to limit stem cell studies. He said administration appointees who reviewed his speech texts deleted references to stem cells.
Again, decisions made before discussion even begins, decisions based on religious and not scientific realities. Wow…

But here’s the one that curls my toes:
” ‘Dr. Carmona was given the authority and had the obligation to be the leading voice for the health of all Americans’, White House spokesman Tony Fratto said. ‘It’s disappointing to us if he failed to use his position to the fullest extent in advocating for policies he thought were in the best interests of the nation. We believe Dr. Carmona received the support necessary to carry out his mission’, Fratto said.
Yeah, blame Carmona for not forcing his view upon Bush and his cronies. I love the double-speak, but as anyone who reads relatively well can see, it’s yet another smoke screen: this administration has no intentions of America remaining a technological leader; they seem more content raking in the billions for the Status Quo.

Hot Electric Quicksand Post #3

I’ll start off this entry with yet another absurdity:

I’d sent my local representative, Wally Herger, a letter in May stating my pro-embryonic stem cell position and my reasoning for it before insisting Herger support the then-upcoming Stem Cell Research Enhancement Act. In typical Brave New World fashion,  I get a letter this week thanking me for OPPOSING said research! Looks like somebody doesn’t read their mail too closely…

(This wasn’t the first time I’d been ‘reversed’, of course, but it came during a period of my life when everything around me seems to be erupting in absurd, twisted and meaningless activity, some of which I’ll relate here.)

So I grab a cup of joe and decide to read the letter anyway. Of course, Herger’s piece is a parrot act of any Right Wing whacko’s illogical yet emotional rants:  “I…believe we must err on the side of life…”, and with respect to IVF eggs and the parents who which to donate the extras for research, “…the fact that an embryo is going to die does not justify experimenting on it or exploiting it as a natural resource.”

OK, good point, but then it all falls apart; Herger goes on to state that other forms of stem cell research are much more promising and have cured or been effective in treating thousands of patients, then he closes with my old favorite: “By contrast, embryonic stem cell research has yet to produce a single cure.”

Uh, Wally, could that possibly be because you Congressional geniuses have not funded ESC research at all, and thus how could there be any results? No one’s putting any money into it, ya effing…

Geez, Wally, I love the logic: ESC’s haven’t been proven to work, so we’re not gonna fund ‘em. How about, let’s fund the research, give it a chance and see if there may be viable treatments derived form ESC’s. And why not allow a couple a donate their extra embryos to qualified researchers?

Hot Electric Quicksand Post #2

Greetings and welcome again to Hot Electric Quicksand.

Lately, it’s been that times 10!

Yeah, I wish I could simply launch into an inspiring, breathless rant which motivates the Abel-Bodied masses and sittin’ plegics alike to wave after wave of action aimed at finding a cure for paralysis…but the truth is, I feel like shit and have for damn near 8 months now.

But let me begin with a few thoughts on  President Bush’s recent veto of the Stem Cell Research Enhancement Act. Depressing news, since an overwhelming number of American voters want embryonic stem cell research to proceed full-steam ahead,  yet there’s light at the end of this tunnel, and this light is inevitable and simply can’t be stopped.

What am I talking about? The light of millions of people demanding research to be allowed which will ultimately affect the majority of the population.

We have become a society which doesn’t die. Since World War Two and the development of antibiotics, people do not die from their injuries and diseases; where spinal cord injury, for instance, was once an immediate death sentence, today plegics live near-normal life spans thanks to the technological strides of the last 60 years. Over that time, people have become accustomed and now demand the ‘miracles’ that seem to pour from research labs across the country and the world. Who wants to die now? Why die, when technology holds the promise of living well and enjoying our bodies long after they’ve traditionally given out.

Hot Electric Quicksand: the Blog

Welcome paralytics and the able-bodied! I’d like to introduce myself and explain why I am writing this blog, what my intentions and goals are, and where I plan to go.

My name is vgrafen. I’ll be 49 in July, 2007. I’m the father of two young gentlemen, and the husband of one of the most remarkable women alive today, my soul mate, Maria Pia Saboia. Pia and I have been married 18 years and, despite the nightmare of paralysis, have managed to survive with our love intact and growing stronger by the day.

Ah, yes, the nightmare of paralysis, the horrific and often sudden, life-altering condition which has tethered me to this wheelchair for almost 8 years. Paralysis, the unthinkable, the unimaginable, the absurd and unbelievable cessation of normality. Paralysis, my constant partner, the unmovable log attached to my chest which I now call ‘my body’.

I’ve been asked more than once, “v, it can’t be that bad, right? You don’t really feel anything, right? So hasn’t it been easy to adjust and get on with living?”

No. Wrong. Sorry, but it is not nor has it ever been easy to adjust. I live in an ever-changing state of almost contentment (for I love life and can’t imagine not living) mixed with horror, agony, anger, frustration, and despair. Oh, I have my good, even great days, but I can never shake the log from my chest. And no, another misconception, that paralysis renders one in a state of ‘no feeling’. Oh, I feel, alright, as do most paralytics; I constantly feel what I can only describe as being in a pool of hot, electric quicksand.

Picture that, if you can: heat coursing up and down your motionless lower limbs; electricity buzzing and sparking constantly, driving you crazy; the feeling of being smothered from all sides, pressure which suffocates and doesn‘t yield. This, as it is for many paralytics, is my constant state.

Oh, and let me not forget…the pain.

“Wait, why,” you may ask, “why have you begun this blog by describing your suffering? We get it, we know it’s no fun, we feel sorry for people in wheelchairs but it won’t do any good to whine about it.”

Rest assured, friends, my intention now and forevermore is not to whine and moan and expect pity from the able-bodied. No, pity alone shall not shake the halls of Congress and the White House. It is not pity I or the members of Unite2Fightparalysis seek, it is action, political, social and medical action which will lead to the development of cures for this pitiless condition. But, in order to stir those in positions to help, they must understand what a paralytic (or ‘plegic’ as I refer to myself and any other para- or quadriplegic) endures every waking moment of their day. Without this glimpse at what we suffer, there is no impetus to act, there is no necessity to move NOW and get us out of our chairs.