by Amy Johnson

Nine months ago I laid my husband Mark to rest after our five-year journey with bvFTD. While I am typically a very private person, our experience with FTD was something that we chose to “live out loud.” Initially, we did this to undo attempts at discrediting his character after he was fired from his job, for behaviors we later learned resulted from his FTD. But “living out loud” turned into something bigger and more meaningful. As our journey unfolded, I realized that we could either hide in the shadows or bring our family’s fight into the light, where it might help others. As many of you know, I chose the latter.

Living out loud is far from easy: It draws attention to your struggles and weaknesses, and while it can bring lots of support and kindness, it also brings out of the shadows people who are cruel and critical. And yet, living out loud while navigating the darkness can bring light and hope to others who are grappling with the cruelty of FTD.

It’s been nearly three years since our family was featured on 60 Minutes, sharing our FTD story. During that time, when I was still in the middle of the FTD journey, others would reach out in search of words of encouragement or wisdom. I struggled to respond. I certainly didn’t do everything right along the way: None of us can. FTD often seems to interrupt our ability to make the right choices, no matter how much careful thought, earnest prayer, and desperate tears we’ve bathed them in. I’ve learned that, in FTD, often there aren’t any “right choices” available. And as much as I might prefer to hide in my shell and quietly tend to the needs of my own family, I realize that sharing the recovery I’ve done over these past nine months might continue to help my FTD family.

I recently listed our home for sale and relocated our family. Preparing to sell the house that Mark and I shared for 15 years played a huge role in processing my grief and finding recovery. This was where our marriage began, the place where we brought our babies home from the hospital. It was where we laid our heads for so many years, sharing laughter and memories, joy and heartache. Every repair and upgrade I made was a reminder of our FTD journey: Patching the wall Mark damaged when he slammed the door too hard. Replacing the entryway flooring that had grown old and mildewed during Mark’s illness, but fell to the bottom of my list of priorities. Repainting and replacing carpet in our master bedroom, where Mark slept through so many days, while I ran myself ragged caring for our home and children all alone, as he grew sicker and sicker. Replacing the dilapidated recliner where I sat during those months and years, a lap full of children, feeling smothered and crying out for help, but receiving none. Fixing the ways in which FTD had damaged our home became extremely therapeutic for me. Repairing what was broken. Restoring what FTD had stolen. Facing the hard memories one by one – working through them, and then washing away the evidence.

Much like the process of fixing up the house, the process of repairing our hearts in the aftermath of FTD has been extensive. After such a long and arduous journey, it’s easy to become jaded. It’s easy to fear that we will never live, or love, or find joy again. It’s easy to get sucked down into the abyss, and wallow in self-pity for all that we’ve endured. And, of course, it is necessary to allow ourselves to feel all of those things – to acknowledge the changes we’ve gone through personally and as a family, and to process all of the grief. Four years of therapy have been a tremendous help for me and my two oldest boys. We’ve learned to quiet self-defeating thoughts and work through complicated feelings. We’ve learned to talk to each other and reach out to friends when we’re feeling low and sad and lonely. We’ve learned to make a conscious effort to show love to each other and to others who are hurting. We’ve learned how to give ourselves grace and offer forgiveness to each other.

For those of you deep in the trenches of FTD, I see you – and you are warriors. Please know that there is joy on the other side of FTD. There is healing to be had, if we seek it. It’s hard and grueling work at times to deal with our grief, but I can attest that the payoff is well worth the effort.