Time Moves On: Lessons for Living With ATTR Amyloidosis

Time wraps me like a scratchy blanket. It has me in an inescapable harness that keeps pulling me forward. I think, "oh, please, can’t we stop just for a moment?" But my plea is in vain. My hereditary disease, ATTR amyloidosis, just plods forward in an ever-increasing assault on my body.

How I understand time after an ATTR amyloidosis diagnosis

Miracle meds have slowed it, but it has partnered with aging in an alliance that has an ending that seems to be coming all too soon. Wow, you’d think I was becoming depressed, that I would lie down and let it take me. But the sun is out. On my face. The birds are singing, the creek is flowing, and children are playing somewhere in the distance. Time moves on, that is life, and time may be short, but I need to make the most out of every minute and every second that I still have because I have a lot to give, and my body still allows me to be productive.

Lesson one: remember ATTR is part of who I am

Oh my, I’ve forgotten the first lesson of this disease, it’s not a ‘thing,’ it IS me. It has been ME since birth; it’s me as much as my blue eyes and brown hair. I talk about this disease that is myself. Wrap your head around that! So, what can I do? I’ve tried to make peace with my osteoarthritis. Two fake knees show that. I’ve tried to make peace with my psoriatic arthritis, as the itching continues. The ATTR amyloidosis? Come on body... why the neuropathy, the cardiomyopathy, shortness of breath, 3 spine surgeries, and an Achilles repair? Who needs a neck anyway? This is getting sad. I’m on 2 stabilizers and a silencer. This better be enough, body.

My body has a strange way of not listening to me. C’mon dude! At least my dog still listens. His ears perk up, true love in his eyes, and I often wonder how I could sic him on this disease. Nope, this disease is me.

Lesson two: move forward one step at a time

Time for the second lesson: live with it. What else are you going to do? It’s not like antibiotics will kill it or a surgeon can remove it. As a kid growing up in Colorado, following my father and older brother climbing yet another mountain, I heard the six-footers in front of my my four-foot frame saying “c’mon Greg, one foot in front of the other... keep moving forward." But the lesson was learned. So, for the rest of my life when confronted by a difficult situation, I will always think, ‘one foot in front of the other, keep moving forward.’

Lesson three: turn pain into advocacy and community support

That’s when I learned lesson three. Get involved. I can’t change what my body is doing, but I can use my knowledge and experience to help others. Of course, I can only talk about myself, and I’m not a physician, but I am a survivor, at least so far. Time is still ticking forward, but I turn it into knowledge and advocacy, using it as a tool to bring another perspective to the disease and to be a more active part of the ATTR community.

There is solace to be had in talking to others with the disease, to understand how it is affecting them and the solutions they have found. Comradery can help you immensely, especially if you are willing to share the knowledge you have gained. Don’t forget that you are unique and your experience with this disease is yours to share.

How I accept my ATTR amyloidosis

I wear my ATTR amyloidosis like my old, time-worn coat. It’s mine. I’m comfortable with it, accept it, and it’s been mine forever. I live with that old coat because it’s a part of me. Not only that, it’s become so much of my psyche and my personality. In many ways, the old coat of a disease defines me. I’ve been given the gift of a longer life by the miracle drugs that have been developed, and that has shown me that, though time moves on, I must use it to be as involved and useful as possible.