I’m Tired, Boss

“I’m tired, Boss” – Big John Coffee, in The Green Mile.

Trust me, John, I think I know how you feel.

I’m tired, too.

I’m tired of hearing about people suffering and dying. I had recently created a list of ALS-related follows on Twitter – patients, caregivers, industry resources – which provided some insight as to how others battled this disease, as well as gave me some additional research sources and even some social interactions.

Problem is, there is so much dying associated with this disease. It’s tiresome. It’s maddening. It’s heartbreaking.

Consider these life stories I’ve read about, just over the past several weeks: Deane, 33, veteran, or Scott, 41, fitness gym owner, or Nic, 44, teacher, or Jimmy, 55, police officer. Sons. Brothers. Husbands. Fathers.

These guys were all younger than me, all likely in better physical condition than me, and all recently died from ALS. It becomes worse when you consider that there are thousands upon thousands of others who have suffered the same fate, but whose stories have not been as publicly shared. Yeah, I’m tired.

I’m tired of there being no cure for this devastating disease. None. 153 years after its discovery, there’s still not a single case of someone being cured. Can you imagine the potential feeling of hopelessness brought about by this knowledge?

In fact, 50% of people with ALS die within two years of being diagnosed – one out of every two people. Almost 80% die within five years. Those statistics are daunting. Of course, there are outliers who live longer, but it’s the extreme exception, and usually only through special medical procedures. And regardless of the quantity of life expectancy, from day one there is the unfortunate understanding that quality of life will drastically diminish, sooner, rather than later. Yeah, I’m tired.

I’m tired of my loss of functionality. Do I miss mowing the lawn? Not really. Do I miss taking out the garbage? Nada. Do I miss jogging? Sure (ok, who am I kidding, I don’t miss jogging). 🙂 But do I miss softball? Or golf? Or bowling? Yes, I do (despite the fact that my score from my last round of golf was higher than my score from my last game of bowling – for the uninitiated, that’s not the way it’s supposed to be). 🙂

Do I miss traffic? Hell, no. But do I miss the power of putting the pedal to the metal and the rush of revving to red line? The feel when behind the wheel? Yes, like you can’t even imagine (upside, think of the money I’m gonna save on speeding tickets!). 🙂

Do I miss a slow walk in the sand with the waves lapping at my feet? Or a peaceful stroll in the serene setting of a field of fresh moonlit snow? Yes, with every remaining fiber of my being.

You will have no idea how much you really miss something until you are physically and emotionally overwhelmed by the stark, brutal realization that you have done it for the very last time. Unfortunately, there have already been so many of these last times, I’ve lost count. Yeah, I’m tired.

I’m tired of watching what is happening to my family. And knowing it’s happening to tens of thousands of families around the world. They don’t deserve this. While I may be the one with the disease, the collateral damage is devastating. I see too much stress, too much suffering, too much heartache, too much burden on those innocent bystanders who are so negatively affected by this disease. Yeah, I’m tired.

Amount of dying. Lack of cure. Loss of function. Effect on family. In each of these situations, I could have replaced the word tired with the word mad. Or frustrated. Or sad. Or bitter. Or angry. Because the range of emotions caused by dealing with this disease runs the entirety of the proverbial gamut.

Yet, while I am tired of all these troubles, all these losses, all this disappointment, all this struggle, there is one thing I am definitely not tired of…

I am not tired of living.

Sure, I could likely fill several pages lamenting over everyday occurrences which leave me frustrated, irritated, and aggrieved. But I assure you, I could fill several volumes recounting the blessings which I truly believe are bestowed on me… Every. Single. Day.

Therefore, that is where I will choose to focus. That is the wolf I will choose to feed.

It is there that I am determined to devote my attention, irrespective of whatever may be the number of remaining days.

Life. Living this wonderful, glorious, spectacular, God-given life.

I assure you, of that, I shall never tire.

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