You have read time and time again from me and many others how strong ALS patients are. There is truth behind this. But where does that strength come from?
Are ALS patients just wired differently? I venture to say no, we are not. We simply choose this outward affect for several reasons, let me remind you these are my thoughts.
For me the reasons are: Anger, Fear, Resentment, Obstinacy and a slew of many other feelings and emotions.
Anger because I don’t deserve this, neither does anyone else. This is a dreadful way to live, knowing there is nothing you or your loved ones can do. Angry because my wife, kids and parents don’t deserve to live with a ticking time bomb that is ALS. Angry because so many organizations have the ability to make drastic impacts on ALS, yet money, politics and outdated health care policies stymie progress.
Fear, because, well it obvious; because its scarry as shit to live with ALS. Im afraid of waking up trapped in my body. Afraid of leaving my family with a gaping hole in their hearts. Scared as hell of struggling for every breath as my condition progresses. Scared that a cure or viable treatment won’t happen in my lifetime.
Resentment, because anger and fear create it. I accept my condition but I resent it. I resent the physical limitations even though my mind is in tact. I want to do… but simply can’t command my body to do so. I resent becoming a burden. I resent that my family resents me, well not me but my ALS. Yes I know they don’t see me as a burden, but I will feel this way until I’m gone.
Obstinacy, why this? Because I have learned that ALS has caused my stubbornness to surface. And I will sure as hell not let ALS dictate our lives, influence yes, but not dictate! I will try every therapy availed to me to kick ALS’s ass. I choose to live for myself and my family in spite of ALS.
Yeah we pALS may come across as hyper-resilient, but as you can see there’s a fire fueled by so many internal factors. Factors that create the outward appearance that we are unstoppable. Just know and understand that although our outward affect is strength we still need You and your support, we draw strength and courage from it.
Stay strong my friends…
The Juan and Only