Flipside

10/23/19

I used to be a people-person. I enjoyed socializing, get-togethers, and hosting folks in my home. That is one thing that has drastically changed since developing nerve damage. It was a gradual change, not abrupt. As the fatigue lingered, I grew weary. It became more and more difficult to converse, whether it be by voice or script. So much energy went into, and continues to go into, simple tasks of daily function. I've come to the opinion that others cannot really understand it, unless they've lived it. I have gathered part of that opinion by what people say to me about me, or say to me about others.

And I understand that - that folks really cannot understand unless they've lived it. I have never lost a child, so I cannot really understand what that is like. I can imagine it, put myself in another's shoes. But I've not lived it. I have never been completely paralyzed. But I can imagine it, vividly. I helped care for my quadriplegic father for twelve years. I've never been in combat, or lived through a war on my home turf, or been imprisoned, or a thousand other things. I can imagine. I can put myself in another's shoes, endeavor to understand, engender empathy toward their plight and sufferings. But I don't think one can really understand unless they've lived it. Even then, that understanding is still limited.

In the mid-2000s, I became acquainted with Mary. Mary had MS and had to use a wheelchair. Her wheelchair wasn't electric; her husband pushed it. Before meeting Mary, I had lived the previous two decades with chronic illness and had been able to get well through trial and error and a combination of approaches. One of my symptoms had been overwhelming fatigue and body aches. I thought I understood what Mary was living. After all, I knew fatigue. How arrogant of me. Not until I developed nerve damage could I more fully grasp what Mary endured. I have thought of her from time to time and wondered how she is doing. My symptoms are similar to MS.

Overwhelming fatigue by itself can be debilitating. Add to that pain; and the fatigue is amplified. Add to that nerves being unable communicate properly resulting in dysfunctional motor control; and the amplification is multiplied. Throw in continued developing symptoms, side effects of medications, financial burdens, traversing the sick-care industry and wellness maze, anxiety and depression, and a host of other life events - and it's a wonder that people continue as long as they do.

I could harbor bitterness toward the dental industry for the high levels of mercury that contributed to or caused the slew of symptoms in my previous chronic-illness life. I could harbor bitterness toward the joint-implant-replacement industry that has contributed to or caused my current chronic illness. I could harbor bitterness toward the pharmaceutical industry for the contaminated albuterol that almost did me in in my previous chronic-illness life and for the terbinafine that contributed to my current condition. I could harbor bitterness toward certain integrative and conventional doctors who, in essence, blamed me for my current condition before my surgeon discovered that my hip implant was leaching heavy metals. I could harbor bitterness toward The Way for their indoctrination to believe that the individual is subservient to their rightly-divided, true-household doctrine, reproof, and correction. I could harbor bitterness toward my ex-mental health therapist, toward certain folks in the anti-Way and anti-cult movements, toward my parents, toward us and them and that and this and on and on.

I could harbor bitterness toward myself for bad choices, for misspeaking, for impatience, for this and that and the other.

Or I can flip it all, and recall how I made it through those times and challenges. Good choices. Strength. Endurance. Happenstances, serendipities, divine interventions, answered prayers - whatever one wants to call it - saw me through some horrific ordeals. And there might be more to come.

As a teen I bought the 45 vinyl record "War" by the Temptations. I'd never heard their song "Ball of Confusion" until I flipped it over.

Dreadful Week Twelve

Today is Wednesday, October 2nd, 2019. On Monday, October 7th, I'll received my 27th lumbar epidural. I received my first in December, 2013.

Always, always, always, in this final week leading up to the epidural, time slows down. I trudge through a dark place of isolation and self-flagellation for my utter incompetence to accomplish what I "should" and what much of human culture would deem as anything of value. Yesterday was one of those deep, dark days.

The cognitive and physical fatigue go off the up-and-down, back-and-forth rails of manageability and send my mind and body careening down an uncontrollable track that feels it will never end. I remind my self that it will end. That this happens every time I hit week twelve. It seems to be unavoidable. Then my elephant, using Jonathan Haidt's metaphor for the automatic part of me that controls so much of me and all humans, starts chattering, When will I ever learn? I know this always happens at week twelve. Why can I not adapt and adjust?

The truth is, I have adapted. I do adjust. It's just so fucking hard.