Let me first be blunt. I am going to die. We all will. It is our inescapable fate. Having been diagnosed with an incurable disease makes me no more death's target than anyone else—I simply have been made much more aware of my inherently impermanent nature on this earth. The Buddha says that it is our attachment to things that are impermanent that causes our suffering, that in order to prevent suffering we much accept impermanence and release our attachments to people, to things, to our own lives. Though no Buddhist scholar, I take this lesson not to mean that we should live in heartless isolation but that we should recognize that our time, our relationships are but temporary gifts. We will feel joy and love. We will feel grief and anger. But ultimately we must accept that all living things are transitory, designed to come and to go. Therefore, when living things go, we must not suffer their loss.
Admittedly, I question whether I will be able to uphold this philosophy in practice, but I find that it brings me peace in theory. I turn to it when I become afraid of mine and others' passing. Despite several brushes with death, I have not feared it, perhaps out of stubbornness and the determination that it was unequivocally not my time. My diagnosis has changed that. I do not fear the actual act of dying. I fear change and loss. At age 31, I am the happiest I have ever been, which means that I also have more to lose than ever before. Suddenly I understand why some people, sick or otherwise, choose to push friends and family away. Friends and family remind us of what we will lose when we go or when they go before us. If friends and family are not around, not to be found, not there for support and love, it is so very much easier to cope because one can not lose what is already lost.
Easier is not always better though. It would be infinitely easier not to fight this disease, to wad up in a ball and cry like Chicken Little, to become bitter and fatalistic. Fighting, continuing on, displaying resoluteness takes a great deal of energy—a fact often overlooked by those who look and see a calm and stoic person. My composure is an exercise in self-control. I do not allow myself to fall apart because to do so would accomplish nothing. Being a sniffling, self-pitying mess does not help my doctors, does not help myself, does not help my family and friends, does not cross items off my bucket list, does not make the best use of what time I have left. I will continue to move forward with purpose until the end of my days at which time my hope is that I can look back and say that they were days well spent.
This steadfastness does not make me super-human. I break. There are times when the fear comes, or the tiredness overwhelms, or the frustration mounts, and I break. I am allowed. These emotions are part of my experience here on earth. I will sit with them, and I will feel them, and I will use them to guide me. The goal is to do this and to then pack the broken pieces back up into my heart and carry on, changed, rearranged, but whole.
advocacy ePatient fibromuscular dysplasia FMD rare disease social media #hcsm Medicine X writing storytelling death medicine 2.0 stroke technology Mayo Clinic mindfulness relationships caregiver dying family life mental health patient care publishing advance directive anxiety depression Buddhism alternative medicine cancer humor rheumatoid arthritis Buddha bucket list health literacy marketing marriage women