After another hospital stay and more complications on the health front, I’ve been doing a lot of soul-searching lately. About life and its meaning. About death and its meaning. About having to face my own inevitable mortality. Not because I think I’m going to die any time soon but because it’s clear to me now that I’m very unlikely to live to be an old man. The chances of reaching the age my father now is, 83, seem so slim as to be impossible to contemplate. And that leads me to a lot of thoughts.
I once wrote an essay about the death of my mother entitled The Meaning of Life is That It Ends. That still strikes me as true. We each have two dates on our tombstones, the dates of our birth and our death, but the only thing that really matters is what happens in between those dates. When I gave the eulogy at my mother’s funeral more than two decades ago, I said that I don’t believe in heaven or hell or an afterlife, and I still don’t. What I do believe is that the only immortality we can hope for is to live on in the memories of those whose lives we touched while we walked this earth. Because I have no children, that somewhat limits those possibilities, but it doesn’t eliminate them. I hope, with whatever time I have left, to leave behind a legacy that helps others in as significant a way as I can manage.
I suppose I should explain my health situation for those who don’t know. I have an autoimmune disorder called sarcoidosis. It’s the same condition that the comedian and actor Bernie Mac had. He died at the same age I am now. It began by attacking my lungs, as it usually does, then moved on to my liver, spleen and bone marrow about three years ago. I am in the process of switching over from prednisone to immunosuppressants, which is the standard treatment protocol for pretty much every autoimmune disorder. But all of those medications have serious side effects that sometimes seem worse than the disease itself. The prednisone has caused my diabetes, once easily controlled with just a daily pill, to become far worse and left me insulin-dependent. It has also caused a great deal of edema (swelling) and other side effects, which then have to be treated with other medications that also have negative side effects.
I have no idea how much time I have left. Recent developments have been both positive and negative. I’ve made real progress in reducing the edema since being hospitalized, losing about 35 pounds in just water weight. We’ve reduced my prednisone dosage in half and, I hope, will eliminate it entirely at some point. But the immunosuppressants I was on initially appear to have caused me to become severely anemic again, which robs me of all my energy and stamina. My hemoglobin is so low that I’m almost to the point where I will need frequent blood transfusions (I’m at 7.3; once it goes below 7, the transfusions will be ordered). I’m undergoing a series of tests to figure out what the causes of the anemia are, as there may be more than one. If we can figure that out and get that fixed, it would be a huge boost to how I feel every day. As it is, I am so lethargic and exhausted that sometimes I don’t even have the energy to eat.
Here’s the reality: If I’m lucky, I might have 10-15 years left. That’s probably as good as I can possibly hope for and it’s likely to be less than that. And if Republicans get their way and kill off the preexisting mandate requirement for health insurance under Obamacare, it will certainly be far less than that. My monthly medication costs run into the thousands and thousands of dollars and I could not possibly afford to pay for them on my own, or to pay for a policy in a high-risk pool that might replace that mandate. I couldn’t possibly hold a regular job in my condition and it has become difficult enough to make ends meet with just the writing income, even with subsidized health insurance through the exchange.
As an atheist and a humanist, I don’t fear death, but I do fear dying in a terrible way. I fear just wasting away and becoming a burden on others. Most of all, I fear dying without leaving behind something of value, something that helps others and makes society better in some way. I hope to do more to make sure that doesn’t happen in the near future. I think that’s why I want so badly to get the Secular Quemanism project going next year, so that when I die I can leave a thriving organization behind that is dedicated to making lives easier. It’s also why I’ve spent the last few years giving my Atheism is Not Enough talk, urging others to do whatever they can to ease the burden on their fellow human beings.
This blog has become more than I could ever have imagined. It will be 15 years old in a couple months. When I started it, it was just a place for me to rant and I never imagined more than a few friends and family would ever read it. But over time, it grew into a real community and I have all of you to thank for that. It has created connections and treasured friendships. It has allowed me to live my dream of making a living as a writer, a dream I didn’t even imagine was possible at the start. I count myself as extraordinarily lucky in this regard. Thank you all for helping make that a reality for me. I’m going to continue to do it as long as I can.
How can you help me keep going? Well certainly financial support is always welcome. You can do that any number of ways. You can make a one-time or monthly pledge to support my writing on Paypal. You can become a patron of Culture Wars Radio. You can support the Secular Quemanism project, which is very dear to me for the reasons I explained above. I truly want that to be my legacy, more than anything else. I want to help feed people and connect humanist organizations with local charities in a way that really does make life easier for those in need. What else could a humanist ask for than that?
Most importantly, I implore you all to do one thing: Get involved. Volunteer. Read to children, take a hot meal to someone who needs it, visit someone in a nursing facility whose family doesn’t stop by often, help build a Habitat for Humanity house, help plant a community garden, circulate petitions, call your legislators and demand justice and equality for all, welcome a family of refugees and provide support for them, donate to important causes. Do something. Do not be a silent bystander when you see unfairness and bigotry and hatred. Whatever you can do to help even one single person, do it. You will never regret a choice to do the right thing, but you will regret passing up the opportunity when it’s there. “You cannot do a kindness too soon, for you never know how soon it will be too late,” said the great essayist Ralph Waldo Emerson. He also defined a life well lived:
To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty, to find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch, or a redeemed social condition; To know even one life has breathed easier because you have lived. This is to have succeeded.
I hope that when I die, whether that is sooner or later, most will agree that I have succeeded in living such a life. I want to live as long as possible, of course, but more than anything else I want my life to have had an impact on others in a positive way. I thank you all for helping create a community around this blog and for helping support the causes I cherish over the years. And I look forward to continuing to harass you all with my opinions as long as I possibly can.