My life is a river. The river does not know that the ocean lies hundreds of miles ahead. It continues on. On my journey I have met and come to know thousands of individuals. Some flow with me as part of my life. Others I meet, share a moment and never see again. But their influence stays with me, changes me as I move on. But the world has changed. Previously, these encounters were face to face, person to person. Now I have come to know individuals through the world of the internet. They are no less real, nor do they impact me any less having never grasped their hand in a physical greeting.
Some time ago, Kent from New York commented on his progress with amyloidosis. We conversed over time as he prepared for the possibility of a heart transplant. I was glad to share my experience and give him hope. He was still working, but could feel himself slowing down. His close friend, Elise, informed me last week that he has died. This is hard for me. I feel like amyloidosis is this enemy that we fight every day. It is not like fighting a conventional army that you can see and plan for. Rather, it remains insidious, like a terrorist, attacking unexpectedly.
I know that Kent from New York fought a good fight. He did not give up. But I can't shake this sense that he was somehow blindsided by this nasty deposition of unconscionable warped proteins. How they move within us without regard to the damage they leave in their wake. They infiltrate not only the heart muscle, which can lead to slow death, but also attack the wiring at the center of the heart leading to a sudden fatal arrhythmia. Is there no defense against this?
We who share this diagnosis, and even more so, those who care for us with this disease, keep this fear silent within us so as not to tempt fate. Amyloidosis is an orphan diagnosis relegated to a dark corner of medicine; mentioned in medical school and promptly forgotten by most doctors. Where is the celebrity that champions our cause? It is not only rare, but affects each patient so differently that any attempt at discovering its modus operandi is hampered by varied responses in rare patients allowing for little statistical power in planning a unified attack.
Sometimes people ask me what is my prognosis. I honestly don't know. Does that somehow make me like everyone else; blindly living every day with sublime ignorance of their own mortality?
Sometimes I wish that I could respond, when asked, that I have cancer. At least with many cancers, there is a cure; or it only affects one organ in your body. People understand cancer. They don't know where to catalogue amyloidosis; and describing it becomes cumbersome.
Just because I share these thoughts does not mean that I am ever without hope, nor am I sad for myself. I still find incredible joy in every day. I am however, sad for Kent from New York and for his friend Elise. Because I will move on toward the unseen ocean and leave him behind. And yet, it may be that my sadness for him only stems from the briefness of my encounter with him. He may not have shared my sadness, because, like me, he lived a full and happy life of no regrets. If we truly could know the complete essence of any one person, would we mark their absence differently?
My hope remains strong; if I gave Kent hope it was not in vain. But he will be missed as are all of those whose battle against amyloidosis has ended. My heart goes out to all of them and to those who continue to remember and to love them.