It’s often said that people are better off not seeing death coming because death can obviously be a very unsettling and sometimes depressing idea, particularly if it involves suffering dragged out over a long period of time. I think we’ve all heard multiple variations of a phrase like “I hope I go suddenly in my sleep” from a stroke or some variation of a quick, painless death, and most of us have probably even said it at lease once or twice ourselves. I know I have.
Fortunately we live in the modern era where medical science can alleviate some of the suffering with pain meds, surgical treatments and that type of thing, and death doesn’t have to be quite as painful as it was 100 or 200 years ago. Imagine having “doctors” (and I use the term loosely!) cutting off limbs with no anesthesia and shit like that! Hell, the person removing your limb and trying to make sure you didn’t bleed to death, die from an infection (before they knew what caused them!) wasn’t even likely to be a doctor because you probably hacked up a limb working on your farm, and the nearest doctor was a few hours away on horseback! A friend or family member would have to “wing it” on the fly, and I can’t imagine how brutal things must have been in say the 1800s. It’s absolutely hideous to think about and makes the pain I’m feeling now pale in comparison.
Even in the modern era, people do still suffer incredible pain from certain illnesses and even their potential treatments. I’ve heard that the pain and suffering caused by the side effects of chemotherapy can be worse than the cancer itself. I’ve personally suffered a lot of physical pain from my disease and additional pain from both prescription drug side effects and herbal protocol reactions. (No, because it’s “herbal” or “natural” does not mean something is automatically harmless or won’t mess with you. Plenty of toxic poisons are “natural.”) And it’s obviously very difficult psychologically to deal with the idea that you stand a good or pretty much guaranteed chance of dying from your illness, and that stress is obviously a constant weight that constantly chokes your psyche. But you still have some time to experience both suffering and joy. I read something another victim wrote about ALS “feeling like you’re being buried alive” and another that wrote “it feels like lead is flowing through your body and it’s slowly getting heavier.” Both of these descriptions are sadly quite accurate, but I still get to have joyful moments with my friends and family as the dying process evolves.
In contrast, many people are suddenly diagnosed with a disease and told they have only a few weeks to live. I can’t even begin to imagine the level of stress involved in having only mere weeks to “get one’s affairs in order” and try to say goodbye to all your loved ones. I sure as hell couldn’t get all that done, and I’m a “get shit done” kind of guy!! As I’ve said throughout my writing, I’ve been lucky enough to have a life filled with so many awesome people that I wouldn’t be able to say goodbye to everyone, tell everyone how much I love them, deal with the legal and financial aspects of death, much less have the time to ruminate and reflect on my wonderful life and write a few hundred pages worth of memories about it! Sure, the physical and emotional pain of seeing death coming totally sucks, but not having the opportunity to reminisce and write your own swan song of gratefulness probably sucks even more. Hell—even if I die suddenly in my sleep tonight from an unexpected or yet unknown condition completely unrelated to my ALS, I’ve had the opportunity for many months now to deal with death in my own way. And as much as it hurts at times, not having a chance at all or trying to do what I’ve done in the past year in a mere month or not at all would be far, far worse in a lot of ways. I’m certainly not sure whether life is simply a series of random events or something with a higher purpose, but I started writing this blog because I needed to wrap my head around what was happening to me and if there was some cosmic reason I got ALS and what it all meant. I sent the text thread below to my friend Jean discussing this very thing and made a note to myself to think and write about it.
As a Taoist, I’ve got to look at life and death as two sides of the same coin, and experiencing both to the fullest is truly a blessing rather than a curse in a lot of ways. I’ve said WTF to a lot of things in life, and why should my inevitable death be any different? I’ve experienced an outpouring of more real friendship and love than I ever thought possible in recent months. I’ve cried together with many friends knowing that we will genuinely miss each other greatly. I’ve remembered cool happenings and stories long forgotten and been reminded of many others I had forgotten by friends who shared their fond memories with me. I wouldn’t have experienced any of these things if I died suddenly or even on a few weeks’ notice.
For me the biggest challenge is making the decision about when to go. If I wait long enough, the ALS will decide for me, but I don’t really want to end up like these people in the photos below just to hang on another year. The decision is made infinitely more difficult by the fact that I love life so much. I want to squeeze out every last drop of joy, fun, love and minute of experience from life, so that makes it that much harder to say goodbye. It’s a really delicate balance in terms of how much pain and suffering is too much versus reaching for a few extra moments of joy. The million-dollar question is whether having the power to make that decision is a blessing or a curse.
My friend Denise recently posed a really interesting quality-of-life question to me recently. Her question was: “If you had a choice between living one more year of life at your physical peak a few years ago versus five more years in your current state, which would you choose?” My first response was kind of snarky, although it makes sense in a way. I replied: “How about a compromise where I get to live three years limping around on a cane, but actually being able to work, drive, go out of the house often, hit the gym, etc…?” My next thought was of course that I would take one quality year over five more painful years, but I’ve got to say that the more I think about it, the harder the question becomes to answer. I have a lot of bad days and few horrendous ones, but there are some not-so-bad days and great moments in there too.
I’ve also thought more about how a lot of other people suffer pretty much in silence (or not—Hahaha!) throughout their entire lives, yet they somehow have the will to stay alive and keep suffering for decades. I’ve been thinking recently about my cousin Michael and a friend Sandra’s son David who both suffered from schizophrenia since it kicked in for them during puberty. Michael lived to be about 45 and died from chronic alcohol abuse as his remedy to fight the imaginary voices in his head destroyed his liver. David endured about 10 years of suffering before he died, and he struggled constantly with the exhausting side effects of the meds versus the other option of daily mental torture at the hands of schizophrenia. I’ve known others who are chronically anxious and depressed for most of their lives. They haven’t had anywhere near the amount of enjoyment I’ve had, and after a few bad reactions to meds, I can’t even imagine living most of your life feeling that way. And then there are many others who live pretty boring lives (by my standards) and really don’t seem to experience a lot of joy, happiness, pain, suffering, or much of anything at all. I do think about that as write about my life, and even if the end is shitty, I would never trade my “55 rock star years” for 85 or even 95 boring-ass years!
I’ve recently been thinking too about others who have lost family members and friends far too young. My best friend Kevin and Sandy’s son Ryan had a rare birth defect called Trisomy 18 which took his life at only 9 months old. My high school friend Chris lost his brother in his 20s in a windsurfing accident when Robbie had an epileptic seizure. My good friend Robert nearly died getting hit by a car on his bike when he was in his early 20s, and he’s probably had at least a dozen different prosthetic legs during the ensuing 40 years. And my friends Tim and Kathy’s son Luke was born with some cognitive birth defect so rare it doesn’t even have a name! But Luke has been going for 26 years with the mind of a kid aged 9 months to a few years old, even though he’s now in the body of a full-grown adult. I know it’s been quite a challenge for Tim and Kathy to care for Luke all these years.
Geez—What do I have to be so sad about? I’ve been lucky enough to live many decades with many moments of pure ecstasy and very little pain. The worst health problems I’ve ever had were some asthmatic allergies as a kid and a couple of minor injuries in the gym. Hell–Both my parents are still alive and they are almost 90!
What all this has made me realize is that I probably should have had a lot more empathy for others over the years. I’ve received an outpouring of empathy since my health went south, and I think I could have been there more than I was for some of my friends over the years. I’ve always been kind of an energetic Type A personality who typically focused on my own business and my own pleasure, and I don’t think I really fully related to the pain others were going though as much as I should have.
That said, I think I’ve always been an honest (probably to a fault—Hahaha!) fair, open-minded person that has tried to be a good friend to everyone (when I wasn’t too busy working or hanging with other friends!), so hopefully karma will be good to me if such a thing ultimately matters in the universe. And seeing death coming has also allowed me to become more generous and start helping others personally and financially as well. I’ve set up a trust to take care of my parents. I’ve given away some of my prized personal possessions to friends who will really appreciate them, and I’m thinking of how I can help others with money I’ve saved that I’ll never be able to spend. And it makes me feel good each time I do it, and I’ve honestly been more motivated to do that by all the unselfish love everyone has shown me. You guys taught me the largest lesson of love late in life (how’s that for alliteration!), and I’m going to do my best to pay it forward as much as I can in the time I have left. Life is a delicate balancing act, and I’ve had so much of the good stuff it’s probably just my turn for some pain. I’ll just hang in there as long as I can and grab all the joyful moments I can…