The White Noise of Pain

The first sign of any trouble was the numbness in my arm. I had been swinging a sledge hammer three nights in a row, chipping 30 year old tile off of the bathroom wall of my recently purchased first home, and I thought that I had done nothing more than strain my arm. Within a few weeks, the tingling and numbness had spread from my arm, up shoulder, into my face and eventually all the way down the right side of my body. When the numbness hit my leg, it was accompanied by weakness, some loss of muscle control that threatened to send me head first into the wall every time I stood without any support. My fingers felt like someone had stuck an airhose in my elbow and and pumped 500 psi into my fingers. I could not button my shirts, nor could I write; hell I could barely pick up a pen.

Rain Pryor, the lovely daughter of Richard Pryor, has also played a huge role in the National Multiple Sclerosis Society. Rain spoke at the national conference, and also displayed her beautiful singing voice. When describing the period when her father was first diagnosed with "MS", Rain said she thought MS meant More Shit, because it was being piled on top of the wives and the women and drug abuse. (You can imagine the gasps from the Krispy Kracker section of the audience).

I think she may have been on to something. It is no easy thing to care for or live with someone with MS. We often have "invisible" symptoms, and its easy to forget someone has MS, if they aren't in a chair or toting a cane. A common symptom of MS is fatigue, and it can be severe. Depression is not uncommon, and pain can be brutal. It doesn't take long for all of the factors to combine until someone with MS snaps for no apparent reason, gets angry, has outbursts, gets pissy... there is a higher incident of divorce for couples affected by MS. Already rocky marriages get severely tested. For the spouses, parents, children loved ones that serve as care givers, whether its MS or some other crappy disease... these people are my heroes. You can never know how much you mean to all of us.

Aside from the physical symptoms, MS can also cause a loss of cognitive function. In a family that loses a breadwinner to MS, things get really scary. Aside from the loss of income (pray god no loss of insurance at the same time), there are physicians, neurologists, MRI's, shots, therapists, wheelchairs, home renovations... and this is on top of mortgages, car payments, kids, kid's college. More Shit.

Before I got the diagnosis, I went through a CT Scan in the ER to rule out stroke. My primary physician, who somehow has bought shares of stock in diabetes, and who tried several times to tell me I was diabetic, decided that I was suffering some diabetes related nerve damage. He sent me to Tung the Enforcer. Tung had this neat little gizmo that consisted of two large hypedermic connected by 16 gauge wire to a bank of car batteries, by way of a power converter that was humming in a corner, with a slight blue glow. We spent a lovely morning together. Tung took the larger of the two hypedermic and plunged it into my elbow. The other hypedermic was alternatively stuck into my finger tip up to my wrist, and Tung measured the length of time that the electric current took to roast my forearm.

Clay Walker also found his way into our little gang, and has been active in fighting the beast within. He was scheduled to be in Atlanta to play a song or two for the brethren. We left early, still I hope he gave them one hell of a show.

Closer still to my heart, and displayed prominently with the vendors and exhibitors, some yahoo beat me to the punch. Robert Burgin had his car onshow. I tried to talk to him while he was on the exhibition floor, but he looked like he was in a hurry to get to the free bar. Probably figured out I take a drug manufactured by one of Avonex's competitors. That's ok Burgin, cause I am going to get my ride ticket, and I will kick your ass on the track... someday... somewhere, somehow...

I was exhausted when Burgin spoke to the general session, and slept through it. I was told later that Burgin was part of the most powerful and motivational assemblies of the entire week. I am sorry that I missed it. Drive on Burgin, keep the tree green and your slicks in the groove...

One of the hard lessons that Burgin had to learn, same as the rest of us, is that heat kills. The first summer I was going through my divorce, after I had been diagnosed, I was flat ass broke. My ex-wife and her attorney had every extra dime I made tied up in one BS "agreement" or another. My 1991 Cavalier, threatening to break 200,000 miles, decided that air conditioning was no longer necessary. I had to go to Dallas for a hearing, and decided I would be fine rolling the window down, cause, you know, I drive fast and what Texas boy couldn't make do with 70 mph a/c? I got back to the office about 2 pm, in peak heat of the day. It was all I could do to keep my eyes open, take a good guess at my own name, and what day that it was. I went to my apartment, turned on my pretend television (empty card board box with a couple of volume knobs stolen off of stereos displayed at WalMart... I eventually pawned it to pay her attorney's fees), and slept until the next day. I never made that mistake again, but my dreams of living out life as a pirate in the Caribbean or being a beach bum are pretty much over...

Based on the message coming from the NMSS in Atlanta, they are intensifying the fight against MS. The antiseptic war in the lab is spilling out into the streets. The reason is simple. While huge advances have been made in terms of developing drugs that significantly slow the chronic and debilitating disease, scientists have yet to find a way to reverse the damage that is left from the attacks that have already taken place. As an organization, the NMSS has calendared the year 2010 as THE YEAR to make this happen. I will be bothering a lot of people for a lot of contributions between now and then.

In the mean time, I will rely on the magic of Thanksgiving, bee pollen, and the sweet soothing voodoo love of... Formerly Living.