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The Journey

Updated: Jul 9

This picture is filled with promise, and I feel such joy when I think of the day I took it, cruising with friends in our VW club, all having a common destination, not knowing which direction to go, but being led by one who knew the way.

The journey that day was very similar to the FTD/ALS journey we found ourselves on - I knew the destination, but had no idea the way we would go to get there. I said it then, and I will say it now, it was the greatest honor of my life to usher this man, who dedicated his life to our family, to his final destination.

Although looking back now I can see that ALS was creeping in at the same time, it was the FTD symptoms that first caught my attention. The unusual lack of attention to detail, to us, the distracted way he went about his day, the lack of care about our lives, the mechanical way he greeted us and went about every interaction was so out of character. I sensed the shift, but didn’t understand the reason behind it.

I thought that perhaps the losses we had suffered over the past five years, or the strain of the COVID pandemic had transformed my carefree, loving husband into the depressed, brooding, tired man I was seeing. I thought him coming home at lunch to nap before returning to his job of hauling doors and windows to build sites for new homes was a result of his advancing age, though at 55 he still seemed as muscular and physically strong as ever before. it wasn't his body so much as his mind that was betraying him back then. I thought, maybe the magic of our relationship - a deeply loving and intentional one - was fading.

I was becoming more confused and frustrated with his behavior, so different from the man I had known since he was a boy of ten with every passing day, and fearful that he was no longer in love with our life, with me. It was the day he was fired from a new job - driving a school bus for the county - when I finally realized I was, indeed losing him, but to a brain disease, not to waning interest. Larry had told his supervisor that morning, his backpack contained a box knife and some brass knuckles, so if the kids attacked him, he could defend himself. He said they were going to “fear him,” not the other way around. The instant those words came out of his mouth, I knew the problem was not in our relationship, it was in his mind. An illness was something I could actually fathom, as opposed to the fading of our love. It was a problem I could learn to understand and combat, instead of the helpless feeling I experienced as I watched him slip slowly away from us. I understood immediately his final destination, though I couldn’t have foreseen the road that would take us there.

Many who travel the road we do lose the sense of themselves, lose all joy, lose the love for our partner, the intimacy in our marriages, because our partners do. But I knew, instinctively, it wasn’t his fault. There was a wall between us not of his making, and though I couldn’t remove it, I could throw a lifeline over it, and fight every day to let him know he wasn’t alone, and would never be alone. I would be with him every step of the way, loving him, and gentling him in the way one would an anxious horse, feeling my way through his fear and confusion.

I wasn’t sure then where the strength came from to do this every day, but I know now, it was the love he gave to me for all those years, the healing of my broken heart that his love provided. That, and the support of all the friends and family, the relationships we had invested in over the years, that cleared the path for us. They didn’t abandon us now, just like as a group we never once left a stranded vehicle behind, all working together to come up with a solution that allowed us to continue down the road together,

We were all just following the path we were on, trusting in the one leading us through this journey, not wanting to miss a single minute of the ride. 💞

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Cloie Payne
Cloie Payne

Thank you for sharing your journey.


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