Farewell, my dear friend. If there is something beyond this mortal coil, please give my love to your uncle Dave, and to Miles and Tilda. It's OK if you ignore Stinky.
Farewell, my dear friend. If there is something beyond this mortal coil, please give my love to your uncle Dave, and to Miles and Tilda. It's OK if you ignore Stinky.
I've been seeing a life coach, which sounds kind of dumb to me, but it's been helpful, because she's helping to articulate what I really care about, and thus to focus on doing what I want to do, rather than what I think I should. I find that I am more relaxed and confident lately, and I'm accomplishing more things that matter to me. (Such as getting to the trainer 4 times a week, getting solar panels on the house, driving out to Kentucky for a family wedding, and spending more time with friends.)
It's ten months since my brother died. I'm still growing my hair out, two months to go, and it's such a nuisance. I don't know how people deal with it.
I started listening to a podcast on the History of Rome on my long drive, and it feels good to be learning about stuff that I didn't want to spend a ton of time reading about, but that I'm glad to know nonetheless. And so far, my favorite historical character has been Hannibal Baraka, so I'm sad he lost.
Millari is living here at the house again for the summer before she moves to Mexico. It's lovely to have her around so much, though her stuff is creating some clutter. The kitty is very happy she's here, and is every more cuddly and purring than otherwise. (She's in the crook of my arm as I type this. I think she sends her felicitations to you, dear reader.)
I haven't handled this well. Mom has a script in her head, from long before I ever existed, that tells her that no one really values her, and she's reacting in ways that are really codependent. Or maybe it's better to say ways that make me codependent. Anyway, the more time I spend in Andover, the more I'm staying up all night and sleeping all day, like I did when I was a kid, and the less time I spend actually doing stuff I care about, and the worse my depression gets. I don't want to cut mom loose, but I can't keep this up. I want to spend my energy changing my home, getting fitter, dressing better, writing more, gaming with friends, starting another radio show, and maybe even going on a few dates. Plus, my cat now has hyper-thyroidism, so I need to make sure she's OK.
Some other moments worth noting:
This past weekend, I had a lovely supper at a tapas place near Union Square with Redacted. I haven't seen him/her since last spring, so it was good to catch up.
I tidied up in my bedroom and found a number of old cards from usakeh. They follow a consistent pattern of apologizing for not staying in touch more, and then thanking me for sending a gift, calling when she was in the hospital, or otherwise reaching out. It's actually rather pleasant to read so many affirmations piled up together. I hope she keeps sending them.
I also found a program from when mole_underfieldAnd I went to see Book Of Mormon last March 15th. We very much enjoyed the show. We stayed at my godmother's flat near Lincoln Center, and didn't go out that much. I had wanted to gad about the city more, but MU, as was his wont, preferred to stay in and chill. We tried to get into the Nightly Show, but couldn't. (We went to see American Sniper instead, which was OK.) I spent a fair amount of time reading a book which I quite enjoyed, but now I can't recall what it was.
[edit: China Mieville's Perdido Street Station. Just the kind of immersive fantasy I can't stop eating with a spoon.]
That was, in retrospect, about the peak of MU's respite from the cancer. He went off the chemo for a couple of months after that, and the cancer bore down on him until he smothered.
The weekend of October 4th, I flew to Cleveland to catch the final game of the season between the Red Sox and the Indians. I'd floated the idea to MU last winter, and he said he'd like to go if he felt up to it. I stayed with B, whom I hadn't seen much of for many years, as we'd had a falling out after my doomed romance with Grounded. I had a great visit. We reminisced, and carried on as we had done years ago when we in our 20s. I even dug up an old 2nd edition character, just in case it had worked out that I could join his D&D group for a session.
The weather was perfect, and Cleveland was lovely and friendly. The Red Sox capped a losing season by getting beaten 3-1.
Still, it was done, and I noticed some major changes: my moods were much more variable than I was accustomed to. I felt, at times, ebullient and, at others, deeply sad. All would wash over me like a wave and like a wave all would pass. My libido was more powerful and more insistent. This was all acceptable, even desirable, but I also found that I would fly into rages like I hadn't in years, and over trivial matters. I'd get frustrated with something in the kitchen at Mom's house, for example, and I'd be tossing things about, banging pot lids, and swearing up a storm. It was embarrassing for me, and upsetting for Mom. So, about two weeks ago, I started in again on the sertraline. I'm only taking 25 mg a day, but the way it has muted the emotional color in my life has been quite noticeable. Over the past week, I have been settling into a mild depression, a dysthymia, that makes it hard to take care of business–which is particularly embarrassing when I have no business but my own. Still, I'm holding my temper in the manner to which I have grown accustomed, and that's worth it.
I made my cannellini, artichokes, portobellos and stuff over rice dish, then M came over and we three played Dominion. It was fun. I look forward to perhaps trying it again, maybe with something other than the intro set up of cards.
Chatted online with usakeh and now I'm posting this. Am I really forming a new habit?
Oh, and my show went well on Friday, and mom listened in using the iPad I got her for Xmas, so that's starting to pay off.
( ...and thanks for all the fish. )
At the reception, following my brother's request, we sang Always Look On The Bright Side Of Life. About 100 people turned up, some of them quite unexpected, like the Battler, whom I hadn't seen in 20 years; or Suave and Sydneycat, who both made the drive from the valley; millari's parents; many of the people who have been providing home health care; people from MU's school days, both old & recent. Thanks especially to Millari for returning from Germany for a week.
Mom tells me, and Dave would nod, that he was truly happy when I was born, and loved to just sit with me, content, even delighted, by my simple presence. Forty-five years together, and I still don't understand him. I look at pictures and I can't fathom what he's thinking, why he's smiling. Then, today, a friend and her beau looked at my profile on a dating site, and explained that I was doing it all wrong, and that I'd never find anyone like that. I need to be more assertive and confident, they say, and explain to any woman reading it why she should want to meet me. They found each other on that site, doing what they tell me to do, so they might be right, but I don't want to make all those changes. I'm so scared of promoting myself like that that I feel hollowed out with dread.
Isn't it odd that I feel so alien from my brother? We're exactly alike.
I'm starting to think about what comes next–writing an obituary, delivering a eulogy, helping my mother carry on. I shall soon be an only child–how long til I'm an orphan? My life is in flux, as well, because I recently quit my job, so I could spend more time with the family, and finally got around to filing the divorce papers with Millari. I don't miss the actual duties of my job, and I'm still quite satisfied with how my marriage played out, but I do need to re-answer the fundamental question of mortal existence: what now?
I don't know what MU is thinking or feeling right now. I hope he's not plagued with regrets. I hope he isn't full of dread. Those are natural responses, and I'm sure every person who's ever lived felt them in some measure (I do), but I hope my brother feels loved and contented. He deserves to.
It occurs to me that, as an atheist, I should perhaps share my thinking about what it means to be dead, as distinct from the process of dying. Dying is a transitive, not to say transitional, physical experience. I sometimes find myself thinking about what it will be like for me, where and when it will happen, and what my last sight will be.
The actual source of existential dread, however, is the boundless unconscious unbeing that follows. After a life of consciousness, and especially a life of linear narratives, I really can't grasp what formless, endless, nothingness will be like. The classic answer for we unbelievers is that it will precisely nothing. "I" will no longer exist in any way, so, for me, everything will simply stop forever.
That may be the whole truth.
I do have some suspicions that it isn't, though. (buckle up)
First off, consciousness is demonstrably linked to the electrochemical processes in our brains. Whatever it means to think and be self-aware, everything we know about it depends upon our physical brains. What we don't know, and maybe can't know, is whether our experience of consciousness can be wholly explained by what our brains do. (The Baconian Idol of the Tribe, though the tribe in this case may be any living organism, and not merely humanity.) Many people have written stories about being disembodied, or existing as spirits, or an afterlife, but the truth is that no one has ever experienced life without a body, so we really have no reliable testimony at all on this matter.
Second, the atoms in our bodies are no different from the atoms in anything else. If consciousness is just something that emerges from complexity, then the fact that matter is eternal means that we are eternal. We cannot be destroyed because matter cannot be destroyed, and just as matter can't be created, maybe we weren't really created, either. Maybe we were simply latent in the universe, and even after the complex processes that make us us apparently stop, we're still just as latent, just as waiting to emerge, as we were for the 14 billion years that passed by before our cue.
Third, if consciousness is a property of sufficiently organized matter, then the patterns of that organization are governed by physical laws, just like everything else. Which, I think, is another way of saying that we are specific iterations of a universal thingamabob. The wave crashes on the shore, but the ocean is still there. Everything about "us" will survive the death of our bodies, because consciousness (in this wild notion) is inherent in the physical structure of the universe.
Fourth, this starts to resemble the Platonic ideal forms, with everything physical thing merely an imperfect reflection of the metaphysical exemplar. That may well be nonsense, of course, a charming fantasy with no basis in reality. (Or maybe just a more poetical way of saying 'math, bitches'.) I get antsy when things move away from the concrete and specific towards the abstract. But, I must admit, I can't dismiss the reality, the actual not-made-upness, of abstract concepts. Two plus two equals four, even without humans to think it (I can't believe these are arbitrary things we just invented), even though "two" has no physical reality.
I'm dozing off, so I may have lost my thread, I think that, even without indulging in superstition, the old adage may be true: omnia mutantur, nihil interit.
I'm waiting around at the Dana Farber Cancer Institute. My brother just had an endoscopic procedure to put a stent in his liver. It's been a bit more than a year since the diagnosis, and nine months since we learned it's too advanced for a cure. Six months of chemotherapy followed, then a couple of months hiatus while he built up his strength and we waited to see what effect it had had on the tumor. Yesterday, we learned that the cancer rebounded aggressively, and MU needs to restart the chemo next Monday. This sucks, but is not unexpected--MU's had pain, worsening and increasingly constant pain, for the last couple of weeks--and we think it likely that the chemo will again be tolerable and effective in controlling the disease.
As for me, I'm in a comfortable but difficult limbo. I resigned from my job managing the store in Northampton, because I took nearly 3 months off last year, and we just can't sustain that if I have to do it again this year. Dropping everything to help my family was the right decision, but it's created problems for me. I'm muddling through financially, but the great swaths of unstructured time pose real challenges for me. I'm good at thinking of things I could, should, or even need to do, but the 'executive functioning' that lets people actually set goals and accomplish them doesn't work so well for me. It doesn't help that my long-standing ADD meds seem to be causing some irritating nervous tics, so I need to switch to something else.
Still, I have had time to watch a crapload of stuff on Netflix and Hulu. It's not an actual accomplishment, but it has been pleasantly diverting.
I'm in Andover, visiting with my mother and brother as has become my wont. My brother has another chemo appointment tomorrow, and I'll be accompanying him. Assuming that he find this as tolerable as the last one, it will be the start of an ongoing series of treatments.
I have spent about three months of this year back here, lending what support I can. Besides cutting into my income, it's changed the situation at the store significantly. Back in May, when my brother was first diagnosed, I was here for most of the month to rally round the flag, and then my father died, so I wound up not working that entire month. While I was away, it became clear that the fellow managing the store was derelict in his duties and, worse, lying to the board about it. So, the first day I came back, he was fired and Lefty took over again as store manager (he's been coming up every week from New York), and we began this intense process of damage control to get the delinquent bills paid. It was a difficult couple of months, but we got things back on track, and we started grooming me to take over as store manager.
And then we found out that the doctors at MGH had been really wrong about Dave's condition. September was tumultuous, and we tried to find a way to tag-team running the store with each of us doing it part-time, but it just didn't work. So, while I'm still working at the store, I have stepped down as a manager, gone back to working hourly, and taking a pay cut. We have put out a call for applicants to manage the Northampton store, and I'll help train them up to the job, when I'm not out here.
I hope that my brother and I might take some fun trips together soon. I'm particularly thinking of Hawaii and then New Zealand, but sojourns to New York or Chicago also sound good.
I have been thinking about what to do with myself, given that I have more time on my hands, and what sort of goals I should pursue since throwing myself into work isn't really an option just now. It's lead me to wonder what it is that dedicated creative types have that I don't. One answer that has occurred is a social infrastructure that promotes writing, drawing, etc. and I think I might have stumbled into one just now around my new radio show.
Yes, I have a radio show, Civil Politics, on Valley Free Radio (WXOJ-LP, 103.3 FM for those of you in western MA) every Friday at 7 PM. I'm the host, and George Claxton and Susan Timberlake are the commenters, and we talk about political issues. We're less concerned with the tribal squabbles of our two parties, and more with what politics is about: competing interests, social problems, moral values, and finding ways to get along with each other. We must have 3 or 4 listeners already! (The show is available for streaming, and we're recording them as podcasts, which are online at civilpolitics.wordpress.com) I quite like doing the show, and I think it's an important set of discussions to have, one that more widely known media don't actually do. I have yet to listen to any of them again, but I will do, because I want to get better at it.
MU finished the radiation and chemo in July, and had a follow up scan in August. The results were, according his oncologists at Mass General, the best possible. Plans were made for surgery on 9/9 to cut out part of his stomach, where the tumor had been, to prevent it returning and spreading. Once the operation began, however, the doctors observed little spots of cancer spread across his stomach and into his intestines. It was too late to perform the surgery, or to hope for a cure.
My whole family is stunned by this, and I can only imagine how terrible this must be for MU, given his tendency to assume the worst and worry about what can go wrong. Imagine going to sleep before an operation to cure you, only to wake up and be told you're going to die?
We got a second opinion at the Dana Farber Cancer Institute, and we're going to have them take over MU's treatment. He likes their facility and atmosphere better. In a couple of weeks, he will start more chemo therapy, which we hope will hold things at bay for a while. How long, we don't know. If I understand that statistics correctly, the five year survival rate is 10 to 20 percent, which is pretty bad, but hardly a fait accompli.
I'm going to switch from salary to hourly at work, so I can take off whenever I need to, and they have promised to do everything they can to give us all the time and support we need. I can't properly express how grateful I am for this, not just for my family, but for me.
I have never experienced anything like this before. When Mom had cancer ten years ago, it was clear that they were both new and hadn't spread. The operations to deal with them went smoothly, and she needed little follow up treatment. I didn't truly appreciate then how ridiculously rare and lucky that was. Now I do, because I just want to curl up and hide from this. I'm going to be away for much of the next week, and I plan to do useful stuff at the old family home, and I really don't want to go to work. It feels like such a burden to be there and deal with the challenges we face right now. (It's a whole separate post, but basically Lefty and I put our faith in the wrong guy to head up the Northampton store when Lefty went to New York. It's emotionally very draining, and by far the biggest mistake of my life, as well as the worst misjudgement of character I have ever made.) It feels like a weight pressing on my chest.
I'll try and post about some of the other noteworthy stuff, like my fun vacation to DragonCon, my failed attempts at romance, and maybe even gaming or something.
So, had a lot on my plate this year, and I have neglected LJ, despite vastly preferring it as a place to post more openly and personal than, say, facebonkers.
This year has seen my father die of old age, my brother get cancer (and hopefully recover), a friend from college die of cancer, and me having to step suddenly to more responsible at work.
I didn't work at all in May, but it didn't really recharge me like a vacation, so I'm taking one now. At this moment, I am at the Sheraton in downtown Atlanta, having just picked up my badge for dragoncon. Unlike last time, I'm here alone, just looking to have some fun, visit some friends, and I hope to meet shiny fab in person. I know I know others here, and I hope to see
1) Mom is home again, and happier, and slowly getting stronger.
2) Opening a comic book/game store is really hard work.
3) I may be evolving into a romantic relationship with an old friend, Miss Hannah-Belle Goulet, a woman I have known for many years. I'm not plunging into it, I'm not smitten, but I am definitely interested and it feels... homey. Too early to make too much of it. She has kids, an ex about whom the less I say the better, a home 100 miles away, and I'm not sure if she sees it the same way. But she and her kids just stayed overnight yesterday, and it was fun.
4) The process of making my home what I want continues, not as quickly as I would like. The root of the problem is that I'm truly bad at budgeting my funds, something I should learn to do before I do myself a real mischief.
5) Man, I really like playing games with my friends. I'm still playing Deadlands, I've added a 13th Age organized play campaign on Tuesdays, a Star Wars Edge Of The Empire game on Wednesdays, and I'm looking for more. Pity I can't find a game that involves regular cardio workouts. :P
I drove down to the grand opening of our new store in Mamaroneck NY this evening with Mad Dog and his charming kids. There was a good sized crowd there (30-50 people) of enthusiastic customers, which suggests to me that we have done a good job of creating buzz about the business over the past year. Also, there's a very tasty pizza place nearby, and one of Lefty or Fuschia's friends really knows how to bake a cake.I have been working with a personal organizer who calls her business Chaos Control. It's helping clean up my place, and brighten my mood. I'm back at work as normal on Monday, but I'll fill in tomorrow running the Magic draft. I'm really glad I accepted an invitation at the beginning of the year to join a gaming group playing Deadlands . I like the people, the system and the campaign (and my character) and I'm glad millari has joined us. Looking forward to seeing my cousin from HI over Thanksgiving. Mom finally seems to be on the mend (knock wood). Today, she was able to stand on her own, and she's no longer feverish during the night. And, in trivial news, I came across an essay suggesting watching the Star Wars saga in a particular order(ep IV, V, II, III & VI, omitting Phantom Menace entirely) will drastically improve its narrative tension and impact. I haven't tried it yet, but if I learned anything in grad school, it's that narrative inclusion/exclusion and order make an enormous difference to a story.
It's an ongoing grieving process as they fail and die on the installment plan. My Dad is slipping slowly. His mental acuity has declined, so that he's much like the other human ghosts in the home, and he's physically much less steady on his feet. Soon, I think, even a walker won't be sufficient.
Mom has returned to the rehab hospital, and hopefully will not bounce back to the hospital for more acute care. The good news is that she is definitely recovering from the back surgery: she can sit up without pain, her legs don't hurt, she doesn't look so washed out. The bad news is that she's despondent and a bit confused. She's not remembering new people well, and she's asking me about driving back to Maine or called M by the wrong name. It's too early to despair, but this is what Dad's dementia was like at the beginning.
On top of that, I'm worried about what we are going to do in the longer term. Mom will, I hope, go back home by the end of the month, but I don't know how mobile she'll be. We have arranged for some in home care for now, but in the longer term, if Mom needs a walker that house becomes very difficult for her, and impossible if she's in a wheelchair. Finding a new house is something we have all acknowledged will be useful, but I'm at a loss for driving the process forward. I'm more reactive than strategic in my thinking, and that's a weakness in this context. The stress of confronting a problem whose limits I can't define, the next step for which I can't see clearly, and the consequences thereof could be severe for my family, eats at me.
Personally, I had a terrible job review last week. Honestly, it was more of an intervention. I have, apparently, gone from being a great ASM to a bad one because of the stress and worry and sadness I'm dealing with. This is not merely a knotty problem, or an extended crisis, it's a protracted grieving process. Apparently, it's leading me to be short with customers and employees, which cannot stand. I'm definitely forgetting things as they slide through my ADD brain without sticking.
The worst thing about it, though, was not hearing that I need to straighten up and fly right. I have heard such things before, and while I'm somewhat chagrined that I need to be told, it's sadly part and parcel of ADD. No, the worst was realizing that I needed help, and that these three people in what was ostensibly a professional context were going far beyond the call of duty to throw me a lifeline.
I'm ashamed that I let things get so bad they had to step in. I'm ashamed I didn't ask for help sooner. I'm especially ashamed at how Lefty, who I honestly feel like I can annoy at any moment without meaning to, made it very clear that he trusts and respects me professionally. (He even offered me a job as his full-time #2 again with the NY store. O.o)
EDIT: It occurs to me that I suffer from the fond delusion that I'm a bit like the Doctor: the compassionate madcap who pops out of the background from time to time, helps people, and then disappears while folks shrug and get on with things.
I guess this sort of distress is hard for me to notice. Instead of causing pain, it causes numbness. I'm going to have to do better in keeping it in mind. I need to work on re-establishing and maintaining my domestic routines, which will help me keep it together.
Which is my project for this week. So far, I'm off to a crappy start, with dozing away much of yesterday and today, but I have at least paid some bills, done some cleaning, and seen my therapist. I'm going to call a personal organizer to come and help me set up some systems to better control the chaos towards which I tend. I also could definitely use help from friends. If any of you would care to come by and help me sort through the clutter, I'd appreciate it, especially if you could come over and help me sort comics perhaps tomorrow evening?