Missing Mr. Wired

The night after Marty’s funeral, we had at least twenty people crammed into our living room.  They had come to make a minyan, and to support me with food and talk and prayer and gossip.  The last time I had seen so many people in our place was—hell, I don’t know.  Maybe that time we thought we were going to have just a quiet seder for ourselves at Passover, and then people kept asking if we were doing one, and by the time we got started, we were doing a seder for ten people.  But that was still ten, not twenty.  Last time we had twenty, we weren’t even in this apartment, we were in the one across the hall, and it was an election night party, 1968 I think, and we might even have had fifty people, I sort of remember that.

Now, suddenly, I realize that Marty’s circle of people diminished over the 26 years of his illness, as he had more and more difficulty interacting with them and they found him more and more difficult to interact with.  He was always a lot more gregarious than I will ever be, and I always relied on him to make our sociability until he couldn’t and then for a while I did it for us, and then I just couldn’t any more.  Many of the people who showed up for the funeral, and for shivah, were people we hadn’t seen in years, and for a few minutes I was angry about that, and then I realized Marty couldn’t have handled it even if they had been there while he was dwindling.

My best friend said I seemed “at peace,” and I told her I had been losing him bit by bit over many years, so it wasn’t exactly a shock.  The last two years were the fastest and the worst, but even then we had some really good moments, like our “second honeymoon” last August, at the place where I had rehab after my hip operation.  That was four weeks, and people kept dropping in on us.  The food was good, the company was good, the rehab was excellent, and the staff really knew what they were doing.  We shared a room, which the staff thought was “sweet.”  Apparently a lot of couples don’t do that?

Now shivah is over, and I am back at work, spending more time at the office than I have for almost a year.  Most of the time, working hard helps.  But even then I still feel off balance, as if I had had a limb amputated.  I go to familiar places in my mind, places connected with Marty, and he isn’t there.  So I’m trying to concentrate on work, and earning enough money to cover the debts we’ve accrued in the last two years when I couldn’t work much.  

People have been really terrific, with a couple of minor exceptions (like the call center employee with the obvious South Asian accent who kept asking if he could speak to Mr. Neudel about something or other connected with software.  I kept telling him my husband was “deceased,” and “had passed away,” but when he kept not getting it, I finally yelled “you idiot, my husband can’t talk to you because he’s frickin dead.” Then found myself wondering if Marty would have done the same in similar circumstances—he was not always patient with dense call center employees himself. Then congratulated myself on not having called him an asshole, which Marty definitely would NOT have done.)

A word about Jewish mourning customs: with some modifications for modern life, they are very psychologically sound.  In the first place, we recognize the importance of time.  Maybe that doesn’t work for everybody—apparently the official word among psychologists these days is that grieving for more than a couple of months is “pathological.”  Some shrinks think even four weeks is “excessive” and a bad sign.  But I have a slow mental metabolism.  I take longer than a lot of people to learn stuff and to get over stuff.  The Jewish tradition says a year is reasonable, and that feels right to me.  

The first week is the most intensive—we call it “shivah”, meaning seven days, and the mourner is really supposed to just stay home and do what s/he needs to do emotionally, while people come and go and take care of her/him.  They bring food (I have cooked maybe once this month) and are supposed to just sit and let the mourner talk or not as s/he chooses.  The Book of Job is the sort of negative model for this; Job’s friends hung out and nattered on and on about how Job must have done something awful to deserve his sorrows and he really needed to acknowledge his sin and repent.  What they should have done, and what we are supposed to do, the Tradition says, is SIT DOWN AND SHUT UP unless the mourner feels like talking.  

The next level of mourning is thirty days, which is where I am now.  You go to services every morning (at what I still consider an ungodly hour, but I’m getting used to it) and usually lead prayers, which has the advantage of getting you out of bed when it would be tempting to just sleep the day around and making you be with people when introverts like me would just as soon hide out.  You don’t wear new clothes or jewelry or perfume or super-fancy clothes, or go to parties, but it’s okay to work.  You’re also supposed to study torah-related writings, and to give charity whenever the opportunity presents itself (I try to pay more attention to the panhandlers who cross my path.)

And I’m also doing what I can to point other people toward donating to the charity closest to my heart right now, the CFIDS Association.  CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome, which, with its complications and sequelae, is what Marty died of.  The common wisdom about CFIDS among those who keep up with the research (such as it is) is that NOBODY dies of it.  Maybe the research just doesn’t follow people long enough.  It took 26 years to kill Marty at age 72, but given the fact that he numbered two centenarians and two nonagenarians among his immediate family, it had to overcome some powerful longevity genes to do it.  

For years, CFIDS patients were diagnosed as having mononucleosis, or Epstein-Barr virus, or cytomegalovirus, or above all, depression.  Of COURSE they’re depressed.  They’d have to be crazy NOT to be depressed.  

Every ten years or so, the docs claim to have found some kind of genetic or bacteriological or most often viral cause, which within the next two years or so turns out to be a red herring. The cycle repeated again just last year.

Docs, at least most of the ones the Wired family has encountered, seem to consider it “cheating” to treat symptoms without knowing the cause. The only exceptions are the palliative care and hospice people, with whom the Wired family only recently became acquainted (since April or thereabouts. The studies indicate that EVERYBODY calls them in weeks or months after they should have.)  My family has a long history (well, two generations so far) of people dying of things for which a cure is discovered shortly afterward, and I am waiting for that to happen with CFIDS. So I’m angry about that sometimes, but I still think people who want to honor Marty’s memory can do it best by donating to The CFIDS Association of America, PO Box 220398, Charlotte, NC 28222-0398.  Don’t mourn, organize.

So thanks to you all for still being there, and thanks to Our Leader for putting up with my inability to post over the last few months.



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