Today is a day which reputedly manifests bad luck. A number of these days have slipped right by with me as I was unaware of the date. But whether or not I acknowledged the day, I can’t in memory recall a Friday the 13th that proved particularly unlucky. In fact, I took possession of my first motorcycle on a Friday the 13th. It was a Hodaka 90cc dirt bike, and on its transfer to me I immediately stripped it down. I then reassembled it using a plastic gas tank and plastic fenders made for a Honda Elsinore 250 cc motocrosser. I changed the dorky bars it came with, installing instead a set of bars from a Yamaha 125. The last thing I did to it was to remove the springs and fluid from the front forks, effectively removing the shock absorber components and installed air filler valves for regular automobile tires. Adding air to replace the springs and hydraulic fluid, I managed to increase the ‘throw’ of the front forks by a full 3 inches, allowing the bike to tolerate even more rugged territory than its original setup permitted. I rode that bike for three years before I finally bought a Kawasaki 250cc dirt bike, which was also geared for on-street operation. I kept the Hodaka, and in fact later used its motor, which I also ported and bored out 10 110cc to accommodate a larger carburetor to power a self made go kart.
The point was that sometimes the best approach to life is changing the parameters to better fit one’s own needs, ignoring what is accepted as proper. That Hodaka competed against any number of other dirt bikes and came out ahead more often than not. While I never raced it professionally, or even in sanctioned amateur events, but it remains the best motorcycle I ever owned. If I could ride dirt bikes today, I would no doubt seek out another Hodaka 90 and make the very same changes to it, knowing just how much fun and how reliably faithful that bike was, regardless how I treated it.
Sometimes it’s the right thing to go off the reservation and take one’s own course. Marching to one’s own drummer as the saying goes. Doing so doesn’t have to result in a bad outcome, anymore than Friday the 13th needs to be a bad day, or one that should be taken with apprehension. While deviating from the suggested course might get you some funny looks, in my book that just makes the experience more enjoyable. I shouldn’t be any surprise that when it came to peripheral neuropathy that I again set my own course.
I had any number of medications recommended by my oncology teams, both in Spokane and in Seattle VA hospitals. I rejected the use of Gabapentin ( Neurotin) and Carbamazepine (Tegretol) in favor of other ideas. The drugs were geared to nullify sensations of the nervous system, but both of them, and a couple more suggested drugs, had side effects of headaches and nausea that I didn’t want to experience. Since my chemo experienced laid me so low with just about every side effect on the lengthy list, I had no desire to compound those discomforts with another source for them. As a result, I approached the pain and sensations of neuropathy by how they felt rather than their phantom, pathless origins.
My feet were so cold they burned, and any pressure on them simply brought heightened discomfort. So I bundled my feet in thick wool socks lined with cotton socks, both of them a couple of sizes too big. They fit me loosely and comfortably and kept my feet overly warm, which tended to reduce the short circuit producing chilling effect by cancelling it out with very real warmth. This one thing alone reduced the discomfort by half. I also quit wearing shoes, even slippers, wearing only the doubled socks instead. When I was in bed, I placed pillows on each side of my legs so that the bedclothes would be tented over my feet instead of resting on them. This helped to reduce the peaking aches that almost any contact against my feet created. I also wore soft winter gloves, for the same reason to help the discomfort of my hands, My concession to utility and my opposing thumbs, I cut the index finger and thumbs from the gloves so those digits remained available for use. I have stopped wearing the gloves; the neuropathic discomfort there waned away and disappeared a year after I quit chemotherapy. However, my feet still feel the effects of neuropathy on my feet and both I and my oncologist believe that I may suffer this more or less permanently. So I still wander around in my stocking feet, although I have now sewn leather pads to the bottoms of the feet so I don’t wear holes in them doing the minimal walking I’m capable of.
But I also figured that if giving my senses competing sensations of heat against the cold, effectively giving the barain something to concentrate on other than the bogus neuropathich signals, the same should hold true in other ways. For me, that turned out to be the case, so I also took warm showers and soaked in warm baths, both of which helped to reduce the painful cold sensations. What’s more, I learned that massaging my feet could actually stop the sensations entirely –at least while the foot massage went on. While my wife patiently and dutifully ribbed my feet frequently, she’s plagued by arthritis in her handws and so she couldn’t spend a lot of time rubbing on me. So I conceived a way to do it myself. I found that shuffling my feet on the thick shaggy pile of the house’s carpets had a very similar reduction of uncomfortable sensations in my feet. But I can’t stand any length of time, thanks to the profound deterioration of bone material in my spine, so I invented a method of self foot massage I could accomplish while seated. I picked up one of those beaded car seat covers that used to be the rage back in the 80s. I lay the beaded pads on the floor and rolled my feet back and forth across the beaded surface and got tremendous relief from doing so. I could do this watching television, reading, or while chatting with people. It can be done almost automatically and without thinking about what I was doing. In fact, the relief method improved the circulation in my feet and tended to warm them a bit. It was a great method of helping myself.
I called my methods ‘competing sensation‘ because that was, in fact, what it was based on. I got some funny looks from people who didn’t have peripheral neuropathy, but those who did suffer with it took it seriously after I posted about it on a number of forums. I’d like to think my words, which still languish in the IMF forum archives, helped others as much as it did me. I also believe it because I got quite a few posts and emails thanking me for the suggestion. They said it helped.
So the things that we are warned about, in which we hold apprehension and trepidation, don’t necessarily have to be bad, and sometimes not negative at all. Good things can happen even on days so infamously bad. This year, we have the pleasure of having three Friday the Thirteenths, offering lots of opportunity for luck.
Happy Friday the Thirteenth, everyone!