Yesterday, I picked up Lezli Robyn at the airport. She’s here to visit us in the scenic Pacific Northwest. Lisa Costello,
Archive for Personal
Yesterday, I picked up Lezli Robyn at the airport. She’s here to visit us in the scenic Pacific Northwest. Lisa Costello,
So, yesterday was weird. I had an unexpected burst of energy and focus in the morning, so I did some housecleaning and arranging of stuff. This resulted in significant decluttering, much to the delight of Lisa Costello when she returned from her brunch date.
My friend AC came over, and we talked writing for a while, then she, Lisa and I went to lunch. So far so good.
After that, it got a little weird.
Lisa and I tooled over to the Hawthorne district to get me a haircut. I’m just shaggy enough to need it, even though things are ridiculously short. Plus she’d never met John, my crossbow-toting stylist. That was a fine time, and my hair was much improved.
On returning to the Genre car, we found that the fig tree we’d parked under with the top down had dive-bombed the interior with a rotting fig. It looked like someone had vomited all over the back seat. In the process of dealing with this, I got fig poo all over my cane. I need to go to the auto detail place tomorrow and get the crusted fig poo washed out of the carpet and seats.
We then hied over to Portland Saturday Market to see artist Beverly Toyu. Ellen Eades had given me a gift certificate for a life mask to be made by Beverly. I sat for the making of the facial mold with plaster of Paris, which was a more than passing strange experience. Very intimate, very centering, and rather reminiscent of being laid out as if for my own funeral.
Plus the aftermath was pretty funny.
I don’t recommend this process to anyone who’s claustrophobic or has issues with having their face obscured or pinned close. Otherwise, it’s damned cool experience.
Back at the Genre car, we returned to Hawthorne to buy cheese and bread at Pastaworks. On returning to where we parked, we discovered a flat tire. It was not dead flat, so I pulled around the corner to a side street. Being no longer capable of changing my tire, I of course called my stylist. Being a Hero of the Revolution, he walked the three blocks from his salon and changed my tire for me.
We eventually got to chez Team E— for dinner, only to discover I was supposed to have brought groceries which I had utterly failed to procure. This resulted in dinner at The Observatory (mmm, oregano fry bread), before we finally went home.
Team E— did have some marvelous peppers and whatnot at their house.
So, other than the exploding figs, plaster of Paris up my nose, and the flat tire, it was a pretty good day. Today I have not previously planned stops at the tire place and the auto detail place.
Ah, life. She is for living. Every day I wake up alive is a good day, but figs and all, yesterday was a better day.
Photos and videos © 2013, Joseph E. Lake, Jr. and Lisa Costello.
This work by Joseph E. Lake, Jr. and Lisa Costello is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.
I’m on Short Term Disability now. I’ve been approved for SSDI, and my Long Term Disability (LTD) claim is being processed. I don’t work at the Day Jobbe any more, and I don’t expect to ever be employed again.
I have terminal cancer. That’s my most basic disability: I’m dying. Beyond that, I can barely drive for a commute. My fatigue levels are high, my concentration is poor, my cognitive abilities are eroding (though I’m still pretty high functioning, mostly because of my very strong starting point), I spend hours in the bathroom most days, I can’t stand for very long and have trouble walking. A lot of this is connected to why I don’t write fiction any more, either. Bits of my mind and brain are shut off. Probably permanently.
There’s another angle here. The disability rules for both SSDI and my LTD carrier are very strict about my not working. The Social Security Administration uses the phrase “Substantial Gainful Activity” (SGA) to describe this, but it extends to even fairly minor things. This is all in the name of fraud prevention, but it leads to significant frustrations for me.
For example, Cover Oregon, my state’s ACA implementation process, is convening an advisory council for healthcare delivery quality metrics. They are looking for patient representatives to sit on the council. Given my experiences with healthcare, and my rather long and detailed history of looking at my healthcare experiences from my perspective as a longtime business and technical analyst, I think I could make a strong contribution on the council, at least so long as I’m functional.
I can’t apply for membership, because both the SSA and my LTD carrier might view that as evidence I’m capable of working. Two meetings a month down in Salem, plus some reading and reporting, I could probably handle. It’s not full time work or anything close to it. There’s no compensation. But it would be evidence of SGA, and would imperil my disability benefits. And while I suspect that if I were challenged over it I might eventually prevail, I do not have the time, resources or interest to be a test case. So I cannot pursue this, even though I could do a lot of public good.
Another example. I should no longer be signing literary contracts. I’m not writing any more, but I continue to have opportunities to place inventory, reprints and even collections of my published work. However, it’s very unclear if negotiating and signing a contract, and receiving income from that entirely based on work performed prior to my disability, counts as SGA or off-setting income. Common sense says not, but the SSA rules are flatly contradictory on this between two different sections. And frankly, I don’t know what my LTD carrier rules say about this. Again, I’d probably prevail on being challenged, but again, I don’t want to be a test case.
I can handle the contracts issue through my agent. I don’t write any more anyway. The State of Oregon will be able to deliver healthcare just fine without my contribution. Some aspects of my economic life will probably wind up being shifted into a trust soon.
But what I hate, hate, hate, is being constrained from making what contributions I still can, for fear of running afoul of the fraud management rules behind SSDI and LTD. Because of the overwhelming institutional fear of granting unearned benefits, I am denied a last, few constructive roles in life.
This doesn’t seem right.
Yesterday we laid low, mostly. A high school friend whom I have not seen since the late 1980s came to visit with her partner, so that was a nice lunch at Pacific Pie Company then an afternoon’s conversation. Otherwise it was peace and quiet around Nuevo Rancho Lake.
Today I have a medical appointment, lunch with Dad, and another visiting friend this afternoon. Over the next few days I’ll be digging out from under the accumulated paper and electronic correspondence, including another series of financial and legal issues connected to the ongoing estate planning efforts. Hopefully in the next day or two regular blogging will resume, and I can continue posting the New Zealand photo sets, plus the San Diego Comic Con photo sets.
Do good, be well.
It has come to my attention that if I don’t post to my blog relatively early in the morning, people sometimes grow concerned about my health. I really appreciate that.
I used to always post early because I started my workday at 6 am Pacific time, and I never blogged during working hours. As I grow more ill, I continue to sleep a bit later and get moving a lot slower. Being on disability also means I don’t have a set wakeup time like I used to. Plus sometimes I have things to do first thing, like a breakfast with someone, or a medical appointment.
So here’s me formally stating that while I will continue to blog daily so long as my health allows, I am no longer committed to blogging early in the day. As a practical matter, I’m likely to do that some of the time anyway, but please do not grow concerned.
If something both unexpected and abrupt does occur with my health, Lisa Costello also has the keys to my blog, and will make an announcement as needed.
We are off this morning to San Antonio for a relatively brief pass through Worldcon. Home late Monday night. I will probably be blogging lightly over the long weekend, given my ongoing challenges with multitasking and productivity these days.
See some, all or none of you there.
In the course of my life I have walked on the Great Wall of China, climbed down into an ancient Greek tomb, seen a lion cub nursery with the sun rising over the shoulder of Kilimanjaro, sat with baby seals, and done a thousand other fascinating things. (I feel like Roy Batty at the end of Bladerunner, talking like this.) I’ve visited about forty countries on five continents. I’ve set foot in all fifty U.S. states. I’ve eaten fabulous meals, loved glorious women, written books and stories that stirred at least a few people, spent long nights talking with close friends, and just of late, edged ever closer to the face of death while still drawing breath.
The things I still wish I could do? i.e., my bucket list? A few personal experiences I don’t care to detail here. Some small things I likely won’t be able to do: see all three movies of The Hobbit. Some large things I likely won’t be able to do: watch
So, yeah. Not so much with the bucket list, simply because I’ve been filling my bucket all my life. If anything, my bucket list is to keep on living. I’ve been lucky and beyond lucky. Even now, not-so-slowly dying, most days I still remember my luck and privilege, and am grateful for them.
I have seen the world, after all, and it is us.
Last night I had a total emotional meltdown. Poor Lisa Costello had to support me, literally and figuratively, through an hour or more more of sobbing, the shakes and a fair amount of ranting. Being a terminal cancer patient is a stone bitch.
I’ve commented on occasion that if I’d woken up six or seven years ago in the position I’m in today, I don’t know what I would have done. I don’t know how I even get out of bed these days. Medically speaking, I don’t even know why I’m alive at this point. Objectively speaking, my life is a horror. Yet almost every day I laugh and love and find something interesting to do with myself. But sometimes the weight of it all comes crashing down on me.
As it did last night.
There were two proximate causes of me exploding into meltdown. One was my sense that the malaise of the past two weeks, as I’ve been so ill from the New Zealand death cold, are a fairly accurate preview of the malaise I’ll likely experience as I enter my terminal decline. Oversleeping, loss of appetite, no motivation or energy, lack of mental focus, constant mild confusion and incompetence. It was a glimpse into the not-too-distant future.
The other proximate cause was a huge upwelling of my sense of being so tired of everything. I’m tired of cancer. I’m tired of being ill. I’m tired of drugs, and tests, and being incapacitated, and everyone around me struggling with fear and pain. I’m tired of my own fear and pain. I really do see why people walk away from treatment. I really do understand why people get sick of living.
And that feeling scared the hell out of me. I’m scared enough of death, of the personal extinction. But I’m becoming so tired of the burden of living that I’m becoming scared of life, too.
Don’t take this wrong as you read these words. I’m not giving up, and I’m not feeling suicidal, even passively. Rather, I’m describing my mental and emotional state in extremis last night. As I have proven over and over, I am too stupid and stubborn to die. At least, not quickly and quietly. Lisa pointed out to me that the same psychotic persistence I brought to my writing career is something I’ve been applying to my career as a cancer patient.
But the desperation of this position can overwhelm. I am beyond lucky to have so many friends and family and lovers and fans and supporters and acquaintances. Whatever the opposite of socially isolated is, that’s me. Every day I move in a sea of love and support and kind regard, my course charted by excellent doctors, my needs met in a hundred different ways by a hundred different people, Lisa first and foremost.
But I still walk the path of darkness. And that path continues to grow deeper and colder and shorter. Sometimes, I look up from the light with which I am surrounded and all I can see is the pit into which I am inexorably descending.
And then I weep. For myself, for those whom I love, for those who love me, for life itself. In dying, I fail those who love me, one breath at a time. The pain of my soul is greater than any pain of my body ever will be.
Walk in light as long as you can. I shall try to do the same.
The New Zealand death cold’s occupation of my body has now gone on for fourteen days. I’ve had bouts of influenza that were less disruptive than this damned cold. I am feeling somewhat better today, but definitely continue ill.
I have made a doctor’s appointment for this morning because the lymph node on the left side of my throat has been swollen and painful since Tuesday. I normally associate that feeling with the onset of an infection, not the end of one. This in turn has led me to wonder if I have picked up an opportunistic or secondary infection. The only other time in my life I had a cold anywhere near this bad, I had a bacterial/viral co-infection, and they would alternately wax and wane.
So to the doctor we go this morning, Lisa Costello driving me, laughing all the way, ha ha ha.
This is easily the worst cold of my adult life. We’re about twelve days in for me now, about six days on for Lisa Costello. In that time I’ve enjoyed fever, chills, nausea, chest congestion, deep/wet coughs, nasal congestion, sore throat, croaky voice, loss of appetite, under sleeping, oversleeping, bad sleep, headache, and eye ache. Plus some things I’ve surely forgotten. As well as the usual lower GI festivities which always bedevil my days. As we have become a plague house, one of our forthcoming visitors has rightly cancelled, and another is on notice.
I am somewhat on the mend, and consider myself upgraded to merely wretched and largely incapacitated. Which trust me, is a substantial improvement over recent days.
On the very down side,
I for one blame New Zealand’s national fetish for unheated bathrooms and bedrooms . Breathing cold, damp air all night makes it really hard for me, at least, to stay ahead of this kind of respiratory infection once it starts to set in.
Just slept over ten hours (plus napping yesterday), and I continue quite ill ten days into this New Zealand cold. This is easily one of the worst colds of my adult life. Lisa Costello is also suffering quite badly, so we know it really is a tough bug, and not my general poor health magnifying an ordinary bug.
As a result, no blogging today. Regular wit and erudition will hopefully resume tomorrow.
Home. Jet lagged. Weeks behind on email and postal correspondence. (Though I have kept up the bill payments.) Weeks behind on blogging, all the way back to San Diego Comic Con at the least. Since then I have been to JayWake, a very important wedding, about which more anon, and New Zealand. Thousands of photos to sort and upload. Doctors’ appointments to keep. People to catch up with, including out of town visitors.
Plus needing to take today to (mostly) recover and get over the trip.
Glad we went to New Zealand. Glad we’re home.