I just read an intriguing article in the New York Times about a 23-year-old woman who, dying of brain cancer, determined that she wanted to have her brain cryonically preserved in hope that future medical advances will allow her to revisit the land of the living by transplant—or, more likely given the research that she found so profoundly fascinating and promising that she had already begun to study it seriously herself before her death—by way of her memory and personality infrastructure being reconstructed digitally. A sort of human-AI replica of herself that could ostensibly, hopefully, experience the world she now saw shrinking away from her at such a rapid pace. The idea is far from new, and the desire understandable, if complicated. Twenty-three years seem to constitute an unfairly, an abysmally, small portion of the usual allotted lifespan.
It’s hard, if not impossible, for me to empathize fully, since I’ve already more than doubled that span myself. In my nearly 55 years, I’ve seen enough more of my own life and that of many others, and of the vicissitudes of time and the world, that I wouldn’t choose to extend my own existence, or repeat it, no matter how marvelous and joyful my life has been, no matter whether I die tomorrow or fifty years from tomorrow. I feel strongly enough about it that I possess (and have shared with my loved ones, not to mention doctors and lawyers) an Advance Medical Directive that states my intent never to be kept in stasis by artificial means if I am determined by experts to be irreversibly in a state of brain death and/or inability to act in any such way as to sustain my own life by taking in my own hydration and nutrition. I find the concept of prolonged dying far more repellent than that of dying too soon for my preference.
But I can also imagine that, if I had discovered at age 21 that I had a condition guaranteed not only to kill me inside of two years but also to gradually deprive me of my autonomy, my physical and emotional freedoms, and my sense of self before that oncoming day, I might have had quite a different perspective. Twenty-one-year-old me had so many unrealized hopes and dreams and so little experience of how I fit into the world that I would at the very least have felt like my life was the ultimate bit of unfinished business, a conversation with greater intelligence and extraordinary adventures that I had entered blindly in its midst and could never participate in fully. Still, I suppose I’m simply not a gambler. The possible ways in which the universe I know, however slightly, can and will change before any such radical medical possibilities are realized is at best off-putting to me. Since everything and everyone I’ve known at all, let alone loved, will presumably be long gone or greatly altered, to what and whom would I be returning?
No matter what the reality of this still-fantastical urge is or can become, the crux of the matter is in my mind the natural human craving to see, do, and be ever more than we are when we begin. Intertwined with this is the perpetual knowledge that we are ephemeral and impermanent, though we seldom want to visit that recognition too closely. We will die. It’s not necessarily a terrible truth. But we’d probably all rather choose how and when, if we knew we could.
Here’s a small conundrum, Friends:
How is it that, if each thing ends,
we never think of finitude
as normal—are we just too rud-
imentary to know that we,
the most finite that things can be,
are, too, surrounded by this, while
we live—or is this just denial?
Silly, that we fail to see
our butterfly fragility
as ordinary, simply clear
expression that our tenure here
is as ephemeral, at least,
as any insect, plant, or beast,
and that, despite our destined death,
our lives are full, from that first breath,
first movement, heartbeat, or first thought—
and that is plenty, is it not?
While I was mulling on this, I put together a questionnaire for my family, because we, too, have been talking about how to prepare (as little as it’s really possible) for the practical and logistical aspects of our own deaths and how they affect others. For your consideration, I’ll share it here. No doubt you will think of additional items and aspects that can and should be prepared, especially as they would apply to your unique situation. Stuff it could be useful to have in writing for when you’re dying or dead, to help clarify and simplify it all for your family, friends, heirs, executors, lawyers, and/or future biographers/hagiographers. Or just stuff that might help you clarify how you feel about the whole process yourself. No judgments. No worries. Peace of mind the only goal.
SOME THINGS TO DO BEFORE DYING
(…and not in a Bucket List kind of way…)
1. Write down how you feel, what you believe, what you want, and why it does or doesn’t matter to you. This can be for you alone, to begin with, but it can lead to info that you might share with others later.
a. Consider what your medical beliefs are. I say Beliefs, because we tend to have personal, moral, ethical, and practical reasons for our choices, and if those are important, others should know in case of our being unable to speak up for ourselves for any reason, at some point.
b. If you have religious or philosophical beliefs that can affect what is done with your body, after your death, or in your name, it’s important to see that others have access to that info before they need it, or your wishes will remain unknown.
c. Make/have made and carry/wear a fairly indestructible card, bracelet, dog tag, or other device that can instantly inform rescuers of your medical needs and wishes, and you’ll save yourself and others a ton of grief if anything should happen to render you unable to speak or otherwise inform others. If you scale your info efficiently, you can even include emergency contact information on this device.
d. Both of these aspects of your wishes for personal care/disposal in the event of your incapacity or death can and should be documented legally, if you want any hope of enforcing them. Have a lawyer draw up a Medical Directive and Legal Power of Attorney for you, and file legitimate copies of those documents with your lawyer, your primary doctor, and your closest family member and/or friend (particularly whoever you would designate as your legal stand-in per the Power of Attorney and as Executor of your Will when you die), and keep a copy of each with your personal files, so that you can find them or have another person find them in the hour of need. Short, easy documents. But important.
2. Make sure that those to whom you’re entrusting this information will accept and support that trust. If you want your older sibling to carry out your wishes on your behalf but don’t know that he/she will agree to it or be able to perform that duty, it’s better to find out now and if not, hand the responsibility to another. It really is a responsibility, and work, and not entirely a privilege; if you can’t speak for yourself, don’t expect anyone else to automatically know what you’d wish or to choose to support your wishes. If you’re okay with that, fine. If not, be prepared. And insure that whoever ends up with the job has the paperwork to prove and enforce their authority on your behalf.
3. Write down everything you consider crucial for anyone to know when you die.
a. First and foremost, if you own anything more than the clothes on your back, and/or have any responsibilities to or for anyone or anything you believe has any practical implications (you have debt, a job, or pets, for example), MAKE OUT A WILL. A true, legally written, recognized, and filed Last Will and Testament is the most enforceable and obvious choice in the US, but at the very least, you should have something written by your own hand and witnessed by a reliable person or two, and preferably, also a copy or two in their hands. And update it every once in a while, or when major changes occur in your life (births, marriages, divorces, deaths). But whether it’s a legally recognized document or your hopeful letter of intent, write down anything that you can imagine might affect any persons or entities for good or ill if you die, and what you hope will be done about it if possible. Who will look after your pet rhinoceros, Fluffy? Who’ll inherit your platinum toothpick collection from you? Liquidate your assets? Settle your accounts? Tell your boss or your teammates that you’re not running late or just playing hooky this time but really, truly, extremely deceased? Important stuff, but impossible for anyone who doesn’t know every tiny detail of your life to guess out of thin air.
b. Record (legibly!) all of your business information and any vital personal records that will help your heirs and successors—or the landlord or police—to locate anything essential. Names and contact information for your immediate family members, crucial friends and associates (both personal and business). Account information: where you bank, what kinds of assets you hold, account names, numbers, locations, keys, and codes that will help your protectors to sort out your business as quickly, legally, and easily as possible. Keep a copy of this information in a safe but accessible place in your home or office, but also keep copies with a lawyer, your will executor, your personal representative, and/or at your primary banking institution (in a safe deposit box, for example). The more trusted people who know how to gain access to this information, the less fuss to find it.
c. If there is anything that you are not positive you’ve both told the people around you and put in writing somewhere that someone else can have access to it on your death (if you have the slightest doubt, go and look right now, and put it in your own hand immediately), it’s time to do your homework and rectify that.
4. Include in all of your written documents what you want done with your remains and to memorialize you. It’s amazing to me how few people actually plan and arrange for disposal of their body or what might be done in their memory, assuming that whoever outlives them will willingly take on the tasks, or at the least, not considering what a burden this could become to others. Just say what you want, and then if no laws and none of your survivors differ radically, it’ll happen. (If it doesn’t, it wasn’t going to anyway!) So ask yourself, and answer, too.
a. Are you registered as a potential donor (organs or whole body)? Does your mom (or anyone who needs to) know? Do you carry a card indicating your donor status? Does it say if you have an unusual blood type or medical condition that would affect a donation, like that you were born with three lungs and no spleen?
b. Do you prefer to be buried or cremated? Preserved as a mummy or by taxidermy? Embalmed and laid out in a crystal coffin for display at the local shopping mall? Who knows this? Have you prepaid for any such treatment of your corpse? Did you get any required legal permits for the permanent location of your leftovers? Keep copies of receipts, itemized descriptions, and info about the location of any other services or items for you may have prepaid: clothing, if you wish some specific outfit (those chic neon latex chaps, or the peacock-embroidered straitjacket, perhaps?) for open-casket viewing; a casket or urn; a grave or a niche in a columbarium. Do you prefer that your disposal and memorial arrangements be made through a particular funeral home or mortuary?
c. If you intend to be interred, do you want a headstone or a sculpture marking the site, and if so, do you have a specific design/designer in mind? Does anybody know this? If you get tucked into your grave thinking that a nice bit of Michelangelo-style marble work would do nicely sitting atop your head, but you don’t actually own or have access to any such thing, nor have you mentioned it to anybody, you’ll be in for a bit of a surprise should you peek in from the afterlife and see that there’s a thrift-store Halloween headstone repainted with your name on it there instead.
d. Do you want a funeral, graveside, or memorial service, a wake, or a gigantic pool party? Yes? Then, how about designing it yourself? Why not write out the program, the location of choice, the readings you want and who should read them, songs to be sung and by whom, what brand of single malt Scotch must be served or what piñata shape you require, or who will play the jigs and reels at the wake in a sackbut-and-Krumhorn ensemble. If you’d rather that none of these programs, shows, parties, or gatherings happen, say so, but I’m pretty sure people will do what they want to do to console themselves over your death, so try to be open-minded about it, too. You’ll be dead and not in a position to do much about it. Get over it, bub.
e. Is there anybody who needs to be/insists on being involved in either your end-of-life care or the tidying of your affairs after you’ve died (body disposal, memorial arrangements, legal representation of your estate, inheriting from you, and/or the actual creation, performance, or enactment of your memorial plans)? Make sure that they know what your intent is, and that anyone else who is involved or affected by this knows, too. Preferably, in writing. You could even make that a part of your contact list (see 3b above).
f. Are there any specifics of your will or your estate-disposal plans that, similarly, involve any persons or institutions that would be best spelled out in detail? Are you planning that your business, favorite charity (me, of course), church, alma mater, bowling team, or other organization will have a special scholarship, a 60-foot-tall bronze statue, or an item on their permanent menu commemorating and named after you? Do they know that? Do your executors and heirs know that?
i. Does anybody know exactly what you want it called (i.e., the Earnadene McDazzler Rocket Science Scholarship, the Buzwell & Battyann Furfnik Memorial Pencil Dispenser in the company lunchroom, the My Hairiest Cousin Trophy awarded annually on the date of your first haircut, or the Biennial Klaankie Soap Carving Contest)? Write it down. Tell people. Tell people where you wrote it down, too, because as much as they adore you, they’ll forget, even if you die tomorrow.
ii. And make sure that the institutions or persons on the receiving end know that name and also the exact amount of money that you intend to dedicate to it (a concrete amount, the income from a concrete amount, or a given percentage of your estate). No surprises, no complications.
5. The purpose of all of this, of course, is partly to protect everyone who’s ordinarily around you in your life when you do die, but also to protect you as you’re nearing the end of that life. Give you the best chance of being dealt with as you’d prefer, both in emergency or end-of-life care and after you’ve died. The more you arrange now, the less you have to wonder whether you’ll be treated as you wish, or whether it’ll be especially difficult for others to accomplish. If you can’t do it for your own sake, do it for the sake of those who care about you. If you can’t do it for their sakes, do it for yours.
Have you heard of the booklet Five Wishes ? Someone gave me one to fill out,will do. Can unload it via the computer.
Sent from my iPad
Hadn’t heard of it, but I’ll certainly look it up! I know I’m *far* from the first to say this stuff; it’s just been on my mind lately, I guess. Mom and Dad called me right up the day they read it and filled in some of the blanks for me!! 🙂
Love to you!
I think a lot of our perception of death or “the end” depends on where we are in our life and what we feel we still need to accomplish or experience. I try to look at this life on a daily basis and try to appreciate and value every little second of it as it comes to me, it is not always easy and sometimes I can’t do it at all but when I can the peace and beautify of just being alive is almost overwhelming. It fills me with a feeling that even if it all ended right now, I would be ok, and feel fulfilled… lovely piece here, thank you for sharing. M.
Oh, Michelle. You say that so beautifully. Yes, fulfilled. Life is imperfect, and I am even less perfect within it, but when I remember to focus on the great and the good, I really do feel incredibly wealthy. Not least of all, in having superb friends! Here’s looking at you.
right back at you my friend!
Pingback: You Say Metanoia, I Say Paranoia (Let’s Call the Whole Thing Off!*) | Art-Colored Glasses