In the thick of all of this, I began to notice an unsettling and analogous pattern of isolation developing in my own life. Friends kept away. Family became frustrated with me. With the exceptions of my partner, a handful of friends, and maybe three family members, things had suddenly become very quiet on the Western front.
I realized that I, the grieving, had become nearly as isolated and disquieting as the dying.
Now, I understand that people have limits, and that death is a terrifying, looming spectre over the lives of most people. I don’t much relish losing people either. But I argue that a balance should be struck between one’s own fears of mortality and one’s giving of succor to another in need.
By the same token, the grieving should make an effort to not exceed the limits of those who stick around to offer support. Sadness can be overwhelming in large doses, and I realized because my outlets were so few, I was overloading them. Even my partner, who is exceptionally understanding and responsible, began to reflect my stress in his own life after months of my confiding in him.
I realized that if I were to keep my precious few supporters, I had to find a way of sublimating the sadness, the isolation, and frustrations of my life into another outlet, so that the burden shouldered by others wouldn’t be quite so heavy.
Thankfully, I’m an artist. And catharsis can be beautiful.
I poured my feelings into pen and paper and felt a bit better. I read, took walks, and even took pictures of my action figures to make me laugh, and felt better still. Things weren’t rosy by any stretch of the imagination, but keeping busy and keeping my woes bite-sized for the stalwart few around me certainly made things less bleak.
Lesson learned: you can bitch as much as you like to an action figure and they won’t mind. Haven’t heard any complaints from the books or trees either. And the people that stick around when you’re not at your best — it’s a real litmus test of character. They’re the ones you make the effort to keep around so you can return the favor someday.
Now, about that visit.
Grima was getting sicker and sicker, and I made up my mind, by hook or by crook, that I would visit him before time ran out for us. Thing is, it’s hard to book a flight across time zones when you’re unemployed.
I created a Facebook event offering tarot readings (a longtime hobby of mine) for a range of prices — and holy crap! People really came through. My idea to visit had been shot down by my family as foolish or frivolous with my non-income, and although I had set my mind on it, I doubted that I’d make enough for anything resembling an airplane ticket, let alone food and cab fare. Color me shocked when friends told friends, shared my event if they couldn’t help out, or even donated without my providing a service. By the time I finished my roughly eight billion readings, I had enough to comfortably cover my travel expenses. But then, came the big freak-out.
I HATE traveling alone. Even to familiar place. I was going to a strange town all the way across the country, and I have the directional capacity of a grapefruit.
After much anxiety and behaving a whole lot like Telly monster for a week, I finally made it, in one piece. I’ve never seen someone so happy to see me! Grima and I got off to a comically rough start, with take-out places closing early, Internet dying, and fickle plumbing, but it was all worth it.
For four days, we talked and talked and laughed, and cried. It’s truly amazing how much time you lose being far away. I got to finally see all of Grima’s beautiful clothes and dolls that he made, and when he was feeling poorly, I made myself useful and ran errands or helped his caretaker, who, I have to mention, is one of the most incredibly compassionate people I’ve ever had the pleasure of meeting.
It was really scary at first, not knowing if something would “go wrong” while I was there (and we had a few close calls!), but I wouldn’t trade it for the world.
Grima and I still stay in touch. We will for as long as we can. Sometimes it’s a long time between conversations, but every hello brings a smile to my face. I make sure to drop a line every day, just so he knows he’s thought of.
As for me, I’ve learned that everything is much more ephemeral than I could have ever imagined. Relish the time you have with the people you care about, and get your own affairs together. You never know when you’ll need it.
Writing a will is an annoyance for most people in any situation. But for two people scrambling to get it done, it sucks. And when one person is sick and in pain, and the other two time zones away and trying not to freak out, it really sucks.
Don’t get me wrong, it was worth every drop of blood, sweat, and tears poured into it. But I’m pretty sure that we ran into every single roadblock on the way to getting a legally binding document.
For those of you who don’t know anything about writing a will … well, I didn’t either. It’s time consuming and requires a lot of thought — you have to mentally catalog all of your belongings, all of your friends and family, and what goes to whom. If you’re ill and in tremendous pain, it’s hard to imagine putting that together, or dictating it to someone for hours at a time. I would have never imagined how emotionally and physically draining it could be. I can’t remember ever crying so much, stepping back and saying, “ I’m writing my friend’s will. My friend.” It’s probably the only experience I’ve had in my life that was equal parts horrible and rewarding.
We wrote the will through a series of phone calls and over 3,000 text messages, over the course of which my friend would sometimes black out from their pain in the middle of a conversation, and I, in my zeal to help, didn’t consider the physical limitations of all the typing and talking, and wore him down and made him feel worse. It’s hard to strike a balance between being timely and being exhausting, and in hindsight, I do regret pushing so hard. When someone is in their time of greatest need, their need should take priority over your own need to help, however well meaning.
We finally finished the will — and with a proofreading from my father (an attorney who only helped in the capacity of refining my legalese and double-checking that the final product would hold water in court, for which I am extremely grateful). Getting the will witnessed was another nightmare, and it was in trying to get this done that I began to notice a really horrible pattern.
In order to be 100 percent legal, a will must be witnessed, as must advance directives. We were arranging a health care proxy, and power of attorney. Almost everyone who initially volunteered backed out. Why? They were uncomfortable with my friend’s illness. It was more comfortable for them to treat my friend like he was already dead than to sign their name in the same room as someone who was very much still alive, albeit very sick.
I think it’s about time I told you all a bit about my friend.
Grima Horn’s “Conduit”
Grima Horn’s “Redemption”
Grima is a multidisciplinary artist. By multidisciplinary, I mean painting, sewing dolls and fantastic period costumes, and even welding. He’s lived through about a million catastrophes and insane circumstances and never lost the will to teach or create. Grima suffers from Ehlers-Danlos syndrome, an intensely painful genetic disorder of the connective tissue. He is roughly ten years older than I am and when we met, I found a true mentor — support from one disabled artist to another (I suffer from Tourette syndrome, which, in my case, results in what is effectively a chronic pain condition).
Grima is selfless, caring, and pours every last drop of effort into everything he does –artistically and in his friendships. Even when he is in terrible pain, if I have a bad day, he’s always been right there in my corner. If I sound saccharine, believe me, that stuff rots your teeth. I’m being honest.
With all of this taken into consideration, I found it absolutely abhorrent that people close to Grima would shut him out of their lives for their own peace of mind.
When the will was finally signed, it was not done by his friends. It was done while Grima was in the hospital, and I had the document faxed and signed by two nurses, who probably never want to hear from me again after about a billion phone calls pleading with them to do something that they are equipped to do, capable of, and trained to do. Important lesson, kids — people die in hospitals all the time. If a hospital tells you that they don’t do wills, they either don’t want to bother with you, or they’re lying. Even rehab facilities are able to provide that service, just in case. So with all due respect to the grueling schedules and stressful environment of the health care industry, sometimes you’ve got to be irritatingly persistent just to make people do their jobs.
After the will was signed, we both wanted to throw a party. It was a HUGE relief. But the problem of isolation still bore down heavily on Grima, and after all we had been through, I began to realize a few simple but hugely important ideas on how to be the best friend that you can possibly be to someone who is ill.
-Keep in touch. People feel better when they know they are cared for and kept in mind, and that someone still gives a shit about them, regardless of their health status.
-Respect boundaries. This extends to “keeping in touch.” If your friend needs to sleep, or they’re feeling too crappy to chat, let them have their time, and respect their space. If you ignore this, you are basically saying to the person in question, “you’re not fit to make decisions for yourself, let me make them for you.” This is dehumanizing and demoralizing, so only go over their head in a total emergency.
-Only do what you are able. If you are not physically, financially or emotionally able to cope with certain aspects of a situation, make it clear to the person whom you are helping. Otherwise, you may grow resentful, depressed or exhausted. Or all of the above. Thankfully, I only got the exhausted part, but everyone’s different.
-Take it a day at a time. Everybody has bad days.
-Take care of yourself. Someone you love is dying, you’ve got a lot on your mind, too!
-Ask “ how long do you have?” or anything specific about a person’s condition unless they are willing to share. It’s personal business, and the fact that you are helping does NOT entitle you to it.
-Ignore them. This is the WORST offense. People are either alive or dead, and sick is a hell of a lot different than dead. Do as you would be done by, and I don’t know anyone who would want to be left alone when they’re sick and afraid and sad.
-“Dump” onto them. This person only needs positivity right now. If you are sad and frustrated, confide in another source.
- Say “Feel better!” or “Get well soon!” They won’t. They know that. Hearing it is like a slap in the face. Instead, try asking, “How are you feeling today?” Say “Love you!” or “I’m sorry.”
Next time: Isolation by proxy, and an important visit.
This is part one in a three-part series by Maureen Shockey on being a young person suddenly confronted with the responsibilities of death.
For my age, I’ve seen a lot of people come and go. A LOT. Some friends, some family, some elderly, some my own age or younger. My late teens and twenties have made me feel a bit like Max von Sydow in The Seventh Seal. Each loss hurt as much as the next, but as difficult as mourning was, I did not yet realize that the most difficult road came just before shuffling off the mortal coil.
I had just turned 24, and graduated with my bachelor’s degree in illustration.
About a month later, I got the text message.
A dear friend of mine of over a decade, and not much older than myself, had received a terminal diagnosis.
I felt like someone kicked me in the gut. With Dolph Lundgren.
I panicked, and in a daze of anxiety and anguish, shot off a 4 a.m. text to a very understanding and altogether remarkable friend of mine, begging advice on how the hell to even start to write a letter to comfort a terminal friend. His sound advice and sympathetic reply (with no hard feelings about the ridiculous hour I texted) arrived later that morning, and so I got to writing.
I didn’t write a sympathy note. I didn’t write “I’ll miss you,” or some solemn goodbye.
I wrote a thank you note. I told him how grateful I was that we had shared the time we had. A thank you for all he had done for me.
He was still my friend, and he was still here. I would be here for him, until the very last. If you knew me, you’d know I’m not exaggerating the stubbornness. I cried for an entire day after I sent it out.
Then, things got complicated.
Through an insane laundry list of misfortune and circumstance, my friend had become seriously ill, and even more isolated. Those who were normally close to him were treating my friend abhorrently, as if he were already dead, and his family was totally AWOL. My friend needed a will, and was too sick to write it. No one had stepped up to the plate, and time was of the essence.
It was about this time that I took a step back and really assessed the situation. I was unemployed and looking for work. I had the time. I wasn’t going to leave my friend high and dry. I had no idea what the fuck I was doing. Not a clue. Moreover, I was two time zones away. It was hard to comprehend what I was getting myself into. It wasn’t heroics, but it was the best I could offer.
So, at age 24 — totally unqualified and in way over my head — I volunteered. I was drafting my friend’s will.
Next Week: “If there’s a will, there’s a hundred thousand hurdles, or how I learned to stop walking on eggshells and be a solid friend.”
Jeff Jorgenson, Order of the Good Death member and owner of Seattle’s green funeral home Elemental, has bought his company its first zero emissions electric vehicle. Hell yeah, the environment.
His little Nissan Leaf will be zipping through the streets of Seattle and he’s having a contest for graphic designers (or amateur enthusiasts) to create a classy enviro-logo for the car.
The prize for the winner? A FREE CREMATION. Man, I’ve always wanted to give away a for realsies cremation. Well, that is to say, a free cremation or a $400 Amazon card. If you win you’ll probably pick the gift card. But I want you to pick the cremation. No pressure.
Entries will be judged by a panel of judges from the Order of the Good Death. And we’re harsh, lemme tell you right now. CLICK HERE to see the fine print rules (i.e. no cremating someone who is still alive). Good luck!