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Sunday, August 17, 2014

This is reality

Nobody has my perspective. As much as I appreciate all those who praise my appearance as a positive contrast to what they expected, those who pray for me and view my condition as testament to the power of faith, to those who see me as somehow heroic, I am only a man fighting an uphill battle against formidable odds both physical and emotional. I'm ultimately nothing special. Amy is special. She is the one who deserves all the accolades. She should have crowds surround her and hug her and kiss her. She fights for my survival every second of every day, scouring the Internet and making every effort to locate individuals across the globe for people who may help me, all constantly interrupted by my immediate needs, which are many.

I'm not going to say that nothing will work for me. I don't exclude belief or chemicals or therapy or prayer, but, in truth, none are going to succeed individually. Not medicine, not exercise, not diet, not God. No single modality is nearly capable of solving my core problem. No amount of wishful thinking on your part will succeed. Only my wish may seep into my subconscious and render a change for the better. Conversely, my negativity may strike with equal impact, leaving me static or worse.

This is no fairy tale of any proportion. The route, whatever the outcome, is grueling and painful. While my body fails me more each day, my mind must endure the calamities of random thought infused with the battle of depression and the machination of my overactive imagination.

I'm certain of few things. For one, this is a bitch. I want to live without ALS. I'm not so sure I want to live with it, but I'm not Robin Williams and don't have his option. I'm in no position to demand anything, but I demand everything, all the time. I'm luckily unable to speak so as to avoid opening my big trap and make people's life more miserable when around me. I'm certain that I'm no hero, more a victim, garnering sympathy I don't deserve.

So, please continue to pray for me, offer other means of consideration and hope for the best. Knowing it makes you feel good helps me feel better in my heart. If only my disease lied there.


I will share with you the only perspective I know, the perspective only I know. Beneath the surface I'm much more vulnerable, having been subjected to hopes and disappointments of all kinds. I've concluded exactly nothing with any surety. Everything is threaded with doubt. I'm on task, but without the necessary confidence to select a combination that will hopefully see ultimate success.

It's about faith. I'm trying to believe. I'm just not so blind as to see it. Yet.

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