This post is different from what I usually write. I am not sure of any real, relatable lessons that might be hidden in this very personal bit of writing, but my hope is that reaches deep into the hearts and souls of other people who might have gone through something similar. Perhaps the words will coalesce into some great community of support for everyone who has watched someone close to them slowly fade away into nothing, and we will all be able to offer a unified strength to those who are going through it now, or will have to go through it in the future. Perhaps this post will have some hidden gems sparkling under the surface of the words that may be mined and polished. I don’t know.
To be honest, I am not very comfortable in writing this. Revisiting it makes my heart skip in my chest and my eyes burn with held back tears. I do not want to go back to that hospital room with the heavy smell of decay and the dim, gray glow of a clouded sky secreting in behind the shuttered shades. I don’t want to see the strongest, gentlest, most compassionate man I ever knew in my life stuck to cords on machines that blinked and beeped and kept him alive, but stole away all the things he lived for. I don’t want to go back there, but I do sometimes, because going back there keeps me mindful of here and now and the breath in my body and the beating in my heart. It keeps me grateful and determined and ready to achieve.
You see, my uncle died of ALS (amyotrophic lateral sclerosis) on May 13th, 2015. It came on quick and hard and beat him down like nothing should ever have been able to do to him. This was no ordinary man who was taken away from this world. This was a giant of a man. Everyone he touched was infected by his joy, his excitement for life, his energy, his humor and his kindness. This was a man who gave so much to everyone that he might not of kept enough for himself when the time came to try to fight.
Not that fighting would have mattered, of course. ALS takes them all. Slowly or quickly, it takes them all. ALS is a particularly inhuman way to die. It steals your body and your voice, but leaves you with your mind; untouched except for the constant waves of unending pain and the uninterrupted thoughts of inevitable death. You are left living in a fleshy prison where no one can hear you scream. I cannot imagine a thing closer to a living hell, especially for someone like my uncle, whose purpose in this world was action.
Though his body was an empty, withered husk of the strong, virile man he once was during those final days – the man who taught me how to swim, that never missed a chance to throw the football with me, that showed up to all of life’s events and that offered me fatherly advice and companionship when I had no other man to do so – I could see the secret strength and pleading behind his clear blue eyes. He was desperate to communicate with me, to tell me things that we never got to share. When last I saw him, I heard his eyes scream I love you. I heard them beg me to be strong, to take care of what needed to be taken care of and to never, ever take any of this living for granted. I heard him say it with his eyes as clearly as if he yelled it in my ear and I never forgot a single silent word.
The choking spasms of tears we shared on that last day and the clammy, leathery feel of a once muscular arm and the desperate pleading of conversation in his eyes are etched into my mind forever, and with that etching comes the resolve to never, ever think that this life is anything but an amazing, fleeting treasure. I will always try to see the burden and pain and beauty that we all share in this world and I will rage against it as a storm of love, compassion, empathy and humor. I know that we are all fighting the same fight, and though we might be in different rounds or fighting different opponents, we are all in that ring together and we all have lessons to teach and learn.
Watching someone you love die has a way of turning you forcefully towards your own life. You take stock. You weigh and measure the strength and force to which you are living. It has a way of stripping away your bullshit excuses and demanding that you evaluate and change the trajectory of your life. That day at the hospital with my uncle – when we laughed and cried and we said goodbye – that day changed me. Like the whipping of a cold, bitter wind that changes the course of an aimlessly floating ship, I would forever move boldly in a different direction, sending up great tidal waves of action that would be a trail for others to follow.
The man who was a father to me was taken away and I realized that the only thing I could do to keep him alive was to truly be everything that he saw in me – to leave a legacy so grand, so forceful, so incredible and so bright that no one would ever be able to deny that his love and his lessons were landmarks on my journey towards my eventual success. And though I can never hope to leave such a deep and lasting mark on this world as my uncle did, I hope that I can leave enough to keep his legacy alive in the hearts and minds of others – a legacy of joy and wit and kindness and strength – because that is what we are left with when someone close to us is lost – a chance to keep their legacy alive with the actions of our life.
So, perhaps I will offer at least one solid and definable message of motivation or inspiration in this personal little meandering. Don’t turn away from death. Stare it in the eyes and see in it your future. The people close to you, the people far from you – the people you love and the people you hate – they are all going to die and so are you. I do not say this to be morbid or sad or cruel. I say it because it is the inevitable, undeniable, equalizer of all things and it is one of the greatest motivators life has to offer. We are all in this together. We are all facing the same conclusion. There may not be tomorrow, but there is today. These are the moments for our greatness and to be reflections of the people we have left behind but have never forgotten.