An Inside Look at My Negotiations with a Progressive Disease

“I’ll be fine.”

A little more than two years ago, as I started down this path, I did so with eyes wide open… or so I thought. While I may not have fully understood the depth of the devastation that lay before me, I acknowledged and accepted the difficult journey and its unfortunate, ultimate end.

Despite whatever level of acceptance I may have thought I possessed, I found it was simply impossible not to try and negotiate my way through these struggles. The way I looked at it, I had been involved in hundreds of negotiations throughout my business career; surely I could draw from those experiences to deal with this dilemma. Firm, yet flexible. Give some, take some. Create a win-win situation. Been there, done that, got lots of T-shirts.

Well, suffice to say, naïve is not a good look on me, but it seems as though humbled fits me quite fine.

Have you ever tried to negotiate with a progressive, terminal disease? As you can likely imagine, I wasn’t exactly negotiating from a position of strength. Time and again, I found myself hoping for that give and take, looking for that win-win… and ultimately coming away with a humiliating defeat in every attempt.

My path was littered with losses, and each new negotiation – regardless of my resolve, despite my determination, and irrespective of my attitude – seemed a fait accompli, destined to chalk up yet another capital ‘L’ on the wrong side of the ledger.

In each new negotiation, each negative change in my physical capabilities, I would begrudgingly accept the outcome, while concurrently making an earnest, yet futile, attempt to convince myself that I had drawn a new line in the sand and that I would be just fine as long as I defended that position.

Yeah, good luck with that. My negotiation track record to date looks like this:

    Sure, I’m feeling a little weak. I’ll be fine as long as there’s nothing more to it.
    Yeah, these leg cramps suck. I’ll be fine as long as it doesn’t spread.
    Man, this foot flop is a hassle. I’ll be fine as long as I don’t end up walking funny.
    Dang, this limp really slows me down. I’ll be fine as long as I can walk up the stairs.
    What the hell, I can’t do stairs anymore. I’ll be fine as long as I can still drive.
    Damn it. I can’t even drive anymore. I’ll be fine as long as I can still get off the couch.
    Oh, no, I can’t even get up from the couch anymore. I’ll be fine as long as I can still walk.
    This is sad. I can’t even walk anymore.

Note: several times throughout these negotiations I’d find myself deep in a conversation that went much like this:

Me: F#ck ALS. This is too much. I’m done. I can’t do this anymore.
Also me: Ok loserass quitter boy, you do you.
Me: Hey, kiss my ass, I’m no quitter. I’ve got a lot to live for.
Also me: Right, so don’t be stupid. You’re not done. You know that’s not how you roll. Toughen up, buttercup. Remember the mantra: Faith, Fight, Hope, Love.
Me: Ok, fine, but can I say how much I hate that you’re always right?
Also me: Duly noted. Now let’s get back to living.

And then I would jump right back into the negotiations.

    I’ll be fine as long as I can still dress myself.
    Crap. I can’t even dress myself. I’ll be fine as long as I can still write.
    Sheesh. I can’t even write anymore. I’ll be fine as long as I can still type.
    Wow, I can’t even type anymore. I’ll be fine as long as I can still feed myself.
    Unbelievable. I can’t even feed myself anymore. I’ll be fine as long as I can still move my hands.

    ** I am here. This is now my life, and I have a foreboding sense of what may lie ahead.

    What if I can’t move my hands? I’ll be fine as long as I can still swallow and can continue to eat and drink.
    What if I can’t even eat and drink? I’ll be fine as long as I can still speak.
    What if I can no longer speak? I’ll be fine as long as I can still smile.
    What if I can’t even smile? I’ll be fine as long as I can still breathe.

Unfortunately, I know when I lose my ability to breathe, the joy of my days here with you will have come to an untimely end.

Throughout this humiliating, painful process, my negotiation prowess has been debunked. My confidence in these skills destroyed. My ego devastated. It seems as though I had been thoroughly defeated.

Then I remember what really matters, and it’s not overcoming foot flops or enduring feeding challenges.

No, it’s more important than that. It’s a core, fundamental belief, deeply embedded in every fiber of my being, which will eventually erase every single loss, and will allow me to finish this game of life with a winning record.

With unwavering conviction, I know that for my entire life before this disease, in every single stage during it, and for all of eternity after it that…

I’ll be fine… as long as I can still love.

See, this disease – this ruthless, insidious, devastating disease – will indeed rob me of life.

But this I can assure you – I will never, ever allow it to rob me of love.

That is a non-negotiable line in the sand that I will forever defend.

Love does not rejoice over wrongdoing but rejoices with the truth. It bears all things, believes all things, hopes all things, endures all things. Love never fails. So faith, hope, love remain, these three; but the greatest of these is love.

1 Corinthians 13:6-8,13

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