Chapter 30: In Sickness and in Health
Two broken hearts collide in the midst of battle.
Do you remember standing at the altar facing your betrothed? Did you honestly comprehend the potential seriousness of the vows you were taking? If you haven’t been there yet, no worries; you can still play along. That’s because you won’t remotely grasp what you’re signing up for either.
Jamie and I got married at The Grand Hall in downtown Kansas City on August 26th, 2017.
My sights were set on marrying Jamie fairly early on in our relationship. For the first time in my life, I made a decision that I refused to allow myself to second guess. That’s when I knew I was ready to give my heart to someone else. So I did.
But as I took my bride’s hands and spoke the words, I just wanted to skip to the part where we say, "I do," become husband and wife, and then kiss. I can’t even recall if she agreed to "in sickness and in health." That’s because I blanked out during that section. Don’t you dare tell my wife though! Let’s keep that little out between us.
That seemingly transient line, to Jamie and me at least, meant the occasional surgery, a bad flu/cold, or perhaps the end stages of a long life. A progressively debilitating terminal illness was nowhere on our radar. Alas, here we find ourselves. The unimaginable has transpired. Thus, our happily ever after appears destined to continue its descent into a unique nightmare fathomable only to those plagued by ALS.
Marriage is challenging enough without the "in sickness" being tacked onto it. The stresses of raising children, managing a household, and financing that lifestyle invites plenty of turmoil into even the strongest of bonds. So it should not catch you unawares to hear that our marriage has been pushed to the brink.
Quite the contrast, earlier in the course of the disease, Jamie and I had actually grown closer than ever before. United in our mission to defeat the undefeated, the two of us molded ourselves into a force to behold. But as my independence diminished and our family grew, a divide in our relationship gradually formed. And it was too late before either one of us noticed the gap had become too wide to see the person standing on the other side.
It’s tradition that the groom can’t see his bride before the wedding. But I still tried to take a peak!
In the previous chapter, I alluded to one major point of contention: Acceptance versus fighting. My wife recently adopting the former and I desperately holding onto the latter. However, this is not going to be another story about differences.
With tensions at an all-time high, I knew I had an opportunity to step up and plan something special for our upcoming 5-year wedding anniversary. Hence, I purchased a thoughtful "traditional themed" gift to present to her. I arranged for childcare the night of plus reservations and travel to one of our favorite happy hour spots. Everything was set to go.
But when the big day arrived and I presented my grand plan to Jamie, she had other ideas. After taking pause to smile politely, Jamie thanked me for my efforts then made her alternative suggestion.
"I can’t help but remember last year when we went out and you couldn’t eat or drink anything. It would be one thing if it were a special occasion for me, like a birthday or something. But this is a celebration for the both of us. And I won’t have fun if you can’t either. So I’d be okay just sitting on our patio and enjoying time together."
New synapses formed in my brain and, as a result, the light bulb above my head came on. Jamie was right. This had become about proving ALS couldn’t take yet another beloved piece of our lives away. Sure, figuratively speaking, we could have "stuck it" to ALS by going, but at what cost? This was a time to follow my wife’s lead. This was a time for acceptance.
The decision to lay down our swords and not get into a fight with reality paid off. While Jamie relaxed on our patio sipping margaritas in the sun, I was right there next to her taking tequila shots through my PEG tube. Without all the ambient restaurant chatter, my voice machine could actually reach its intended audience. That allowed us to have the most intimate and healing conversation of a lifetime. What’s more, we could, once again, see each other.
Like most things in life that we force into separate binary corners, there’s room in the middle for nuance. Acceptance and fighting are no exceptions. They’re not default positions; rather, they’re daily situational decisions. Though we chose to accept another loss on our anniversary, we also chose to fight for our marriage that day. And in that regard, I hope we can both remain fighters till death do us part.
