Back to reality and enlightenment

Let me wax, not philosophical, but as a realist when it comes to carrying around the baggage that is ALS. To begin with, aside from my musings and sometimes grandiose indulgences, I am anything but ignorant or foolhardy in my approach to life with the disease. Am I a risk taker? Certainly. Do I scoff at the mere notion of attending an ALS support group? Yes. Why? At first, my emotions were jumbled and my apprehension was high. Now I have a much better handle on both and simply don't want misery or resignation or accommodation as my friend. My support group is and always has been my family and friends, proven by the continued empathy and love that flows from a growing constituency. With the support of others, I have no option but to live on. So I will.

About my health. A couple months back, Amy and I drove to California, not only for Chinese Qigong treatments, but for the adventure of a cross country trip like so many we had taken over the last 35 years, romantic and intimate. Reckless? No. Risky? Maybe. Worth the risk? A thousand times over. Do I think the treatments helped me? Absolutely! Have I provided proper details? Not.

So...... Since returning from California, with its Venice Beach, Corona Del Ray, lousy Los Angeles Zoo, awesome art museums, Lamplight Pizza, Shakey's Pizza, etc. We have continued to practice the treatment regiment suggested by Master Zhou to the best of Amy's ability, (which is formidable). The treatments are not voodoo. The basic concept is simple: bring back muscle memory using range of movement exercise as the primary function, along with intense Chinese Massage. If Chi and transfer of such isn't your bag, then you might as well stop reading and go back to your cocoon of denial and depression that has proven to be so comforting to you. Chi is real. I am proof. I have felt it. I feel it now, always. Without knowing so at the time, I harnessed Chi when, as a Taekwondo competitor, I broke 4 boards with a jumping reverse sidekick, concrete with the palm of my hand, ceramic tiles with my fist. Its no trick. Its real.

I would gather that most who read this blog, even those intimate with the disease, hellfire! ESPECIALLY those intimate with the disease feel that I am, besides half nuts, arrogant and something of a shock jock, doomed. I can't change your minds, but I guarantee I can instill doubt. The only thing absolute is the word itself.

Since arriving home from California, my health has improved dramatically. That bears repeating: since arriving home from California, my health has improved dramatically. The brief stay in Doctor's Hospital, horrible as it was, taught me an important lesson: if you want to live, try to avoid the hospital at all costs because they collectively know nothing about ALS and will load you up with whatever narcotic you desire. Antibiotics are alphabetized for consumption. I left after 3 nights without them having a clue what was wrong with me, putting in the report sepsis, followed by a question mark. This is not intended to be a slam upon the entire medical profession. I'm just pointing out that while modern medicine has come great strides in the areas of trauma and surgery, they are often shooting craps when prescribing drugs.

So, how am I improving and what am I doing to cause such improvement? First, for some unexplainable reason, the last month or so has found me free of any anxiety. I have dumped my obsession with my ailment. It no longer consumes me. I'm done with death train talk. This new state of mine represents the key element to progress of any kind. This change is responsible for my recent post follies. Sorry.

Physical improvements: it takes in the neighborhood of 300 muscles to stand upright. These muscles are signaled by motor neuron cells located at or near the base of the brain and neck. My motor neuron cells are drowning in excess glutamate, causing havoc with the muscle cells. As a result of the confusion, I cannot stand, even for a second. I posed for a picture last year, standing in front of my wheelchair, when in all actuality, I was standing Against the chair. In the real world, Amy plants one foot between mine, reaches under my arms and levers me up from the chair, where she helps hold me up. Until recently, I had to rely on her to not only support some of my weight, but to control my balance. If she loosened her grip, I would begin to fall backwards or forward immediately. My muscles simply refused to cooperate, giving me no help whatsoever. I would fall flat without Amy's support. Lately, recently, even now, I have rediscovered my leg muscles. I have learned that great effort creates great muscular confusion, causing frustration and exhaustion. The key is to relax. The key is to focus. The key is to WILL yourself to succeed! As a result of all this, I can now stand without support. Today I stood for 30 seconds without Amy helping me, without Amy TOUCHING me. Certainly other factors weigh in when calculating improvement's in my health. Recently I've been eating aronia (choke) berries and a handful of vitamins in addition to my regular regiment of good old carnivore meals. Unlike months ago, I now can chew up most anything, drink anything, swallow easily and even drink water bath in large quantities.

I have discovered that a sure fire way to succumb to ALS is to sit around waiting for that miracle pill to appear, playing it safe, avoiding adventure with its inherent risks, staying home wallowing in self pity, waiting for God to fix everything. I venture to guess that even the most devout Christians out there don't really believe Tracy (me) will be cured, more likely praying that I accept Christ before ALS kicks my ass.

It has become increasingly evident that ALS is more of an inconvenience to those around me than to me. I blubber about not being able to take care of myself, to have any independence, when the fact is, those around me must tote and fetch and scratch the itch, lift and brush and wipe and feed, change the channel and roll me over and wash............... I live the life of Riley, yes I do.

In many ways, I am getting better. Physically, mentally and emotionally. I do not dismiss alternative remedies without investigation (more so Amy).  Libraries are teeming with accounts of success and survival. ALS is not incurable. The term itself is defeatist, implying that a cure is not possible. The fact is, many have beaten the disease. I plan to join their ranks.