Family, Illness, Fear and Loathing in My Own Life, Act II

If you read the the first part,  you know that Beloved was in the hospital; to sum up, he had his gall bladder and the boulder inside of it removed.  He also had a slipped lapband, and the good hospital quickly took care of that by removing the saline that allows them to adjust the opening between the top of the stomach and the lapband, ergo the bottom of the stomach.  So he was there from Sunday night (very early Monday morning) until Friday afternoon.  And most of that, say from Tuesday evening or Wednesday morning until his discharge was recovery and making sure his stomach was back online after not eating for almost a month.

I was not able to stay with him in the hospital, but a friend and then his parents took me over to see him several days of the 5 days he was in.  It was a joy to bring him home on my birthday–best present I ever had.  But I also have to tell you that this was the best birthday I’ve had in a long time.  His parents took me out to Eggspectations for a wonderful breakfast (and a rather large Bloody Mary) and gave me gifts of US mint green and the size was … surprising and very generous.  Beloved had primed the nurses, so when I walked in, I had several people wish me “Happy Birthday” and that was surprising and pleasing to me as well.

And somehow, this man who was in the hospital still managed to shop for my birthday.  (Thanks to the Interwebs in the hospital).  I am now the proud owner of a couple of different kinds of titanium utensils and a titanium cup.  These go with my spork and straw.  This all comes from Snow Peak, and is really made for camping–but works for us very well.

Now for the darker side of what began to happen.  The day before he came back from the hospital, as I was waiting for the in-laws to pick me up, I checked the mail…to find the 2nd rejection from SSA for permanent disability.  I made the decision not to tell Beloved because I did not want him to have to worry about it.  (This, by the way, was a big mistake.)

So he came home and all should be lovely, right?  Well, distress or eustress, it’s all still stress…and I’d been on a rollercoaster of emotions that makes any of the supercoasters look like a kiddie coaster.  To put it bluntly, I began to exhibit erratic and irrational behavior, accompanied by stumbling, falling, vertigo, anxiety and several other possible side effects from my medication.  I also had what the professionals refer to as “emotional lability”, which means inappropriate outbursts, possibly hysterical outbursts of laughing or crying.  Short term memory loss was another unpleasant side effect, especially considering how much I have prided myself on being able to remember things.

The most (or least) amusing side effect was this most amazing British accent I suddenly could not shake.  And as Beloved would tell you…it wasn’t just the accent.  I used the British syntax (“my husband is in hospital” rather than the American, “my husband is in THE hospital”) and British slang.  Now, in my own defense, when I lived overseas (1966 – 1976) most of the people to whom I spoke talked to me in the Queen’s English, not in ‘Murican.  AND I have seen thousands of hours of Monthy Python’s Flying Circus and Benny Hill.  I also (when speaking normally) speak very clearly and enunciate my words; I have some British words in my vocabulary (“sshedule” instead of “skedule” or “labORatory” instead of “labruhtory”).  So a British accent is particularly easy for me to slip into, even without being doolalley.

I pointed out that it could have been worse: I also had taken 5 years of French et je parle en francais un peu aussi.  Or I could have had a German or Russian accent.  Can you imagine me, going into the US Veterans’ medical facility with one of those accents?  Not cool.  No, I just sounded like Russell Brand.  And I used the word “fucking” A LOT.  Except in the British accent, it is somehow simultaneously more intense but less offensive, I think.  “Fuhhhhh-KING”.

So he calls my nurse in Fredericksburg and they confab…result: take her to MaGuire Medical Center in Richmond, where they can run a FULL panel of tests, blood pee and otherwise.  Neither of us were thinking very clearly, but we did the best we could.  We gathered up clothes and books for Beloved, because I fully anticipated being “kept” in the hospital.  I called around, looking for a friend’s house for him to have a bed at nights because we couldn’t afford a hotel, for him to drive back and forth, and had no idea what the facilities were like in my room for family members.  The upside to that was that I got back in touch with my aunt and uncle after not seeing (or speaking, really) for about 8 years.  “People have lives!” is what my aunt told me when I mentioned this–and I will say, we went right back into interacting as if NO time had elapsed, so that part was very good.

We had to go north to Warrenton to pick up his medications so that he would have an adequate supply while we were gone, however long we were gone.  So it was late before we got out of town…we waited until my aunt and uncle returned from their dinner engagement to go to their house so that they could meet my husband (first in my family other than my kids to do so) and we talked, probably more than we should have, but it was all necessary.  I was provided with a moment of pure enlightenment from my aunt which made the entire trip worthwhile.  Sort of.

So we finally head over to MaGuire…and the gate is locked.  We have to drive around in the dark, in the rain, without a good idea of where we were going…in a not so great neighborhood.  Finally found the main gate on the OTHER side of the facility grounds and headed for the ER–the only department opened at that time of night.

I cannot bring myself to try and tell you all that happened.  But let’s see if I can adequately describe the most outstanding parts.  The man who came to talk to me did not introduce himself, was not wearing an ID.  Found out later he was, indeed, The Doctor.  He kept asking me what I was in the ER and when I told him it was because no other department was open, looked at me as if I had walked in covered in shit.  I award him the “Pain in the Ass Award” because between the Hardees I had eaten earlier (BIG BIG MISTAKE) and the stress, my IBD kicked in.  FULL FORCE.  I made trips to the little girls about every 20-30 minutes.

Back to the fun: they took 4-5 vials of blood, x-rayed my chest (I do NOT have tuberculosis) and CT scanned my head–found nothing, as the joke goes.  Did a urinalysis, a complete drug scan (I have a new list of things to try next time I want to do recreational drugs) and the end result was I still have a slightly elevated blood sugar count.  And they got all this done in (drum roll) 3 1/2 hours.  Including an hour’s talking to the student intern psychiatrist, who, while completely sympathetic, had apparently been sent down from the psych ward to “practice” taking a history because NONE of the copious notes we watched her take were included in the wad of discharge papers they gave me.

I went there, terrified of being crazy and getting locked up.  Being kicked to the curb with a new script or two was….anticlimactic.  I was almost disappointed.  And Beloved was so angry and insistent, we drove back home, getting into Bealeton about 8.  Almost 24 hours without sleep, with bad food, with the Tijuana Trots thrown in….BUT I was HOME, with MY Beloved.  Took the necessary meds and tried to sleep.  I managed only 1-3 hour spurts of sleep until Monday night–so for 4 days, I was sleeping a lot but not all at once.  I didn’t eat again until Monday lunch time–this is a fuck all of a diet; I dropped about 5 pounds in 5 days.  I carefully and under the Beloved’s very watchful eye, took a Vicodin when I needed it…and broke a cycle of pain I had been in for over 2 months.

And the British accent went away, mostly.  It crops up when I am feeling anxiety or stress.  I have an appointment with the psychiatrist on the 11th, but of more worth, I think, is my appointment with the psychologist on the 6th.  We’ve had such an incredible amount of stress, both good things and bad, that it would not be odd for me to have an anxiety disorder.  Having my main support go into the hospital, knowing that the BAD hospital could have killed him (you can die from dehydration, and pretty fast)…did NOT help me at all.  Is it any wonder that my brain decided to go on vacation without me?

I tell you all of this because it’s not shameful.  I may add more details as I feel comfortable talking about them–there are still parts that make me go all British and emotional lability all over the place.  I am finding that I get very anxious out in public, especially in larger crowds.  (Grocery stores pretty much do me in.)  I would prefer not be agoraphobic, I like the outdoors, but…I feel safer in my house, no matter how filthy it is, or how much laundry needs to be done.  I do not plan on living my life like this, so I will seek out whatever kind of treatment will help me cope with the levels of anxiety and stress I have–I obviously need the help.

I am almost OCD (CDO?) in the taking of my medications.  I set them out, verify them with Beloved, and take them.  I am back to eating more or less regularly–and we are trying to get started in the routine we want to have in Eureka, which actually involves eating 4 times a day.  Better for both of us.  I am sleeping a full night and not having to nap during the day (or face crash into my keyboard!).  My guts have finally settled down and I feel pretty good physically.  I do not need the quadruped cane, using the single footed one instead–and mostly as an accessory, instead of leaning and limping along.  I am walking smoother, not stumbling and the speed is kind of amazing.  Oh, I’m not going to win any races, but at least I can move almost naturally.

And we are taking this week to heal and recuperate, especially as “SOME” of us had real surgery and aren’t allowed to lift or exert.  Then we begin preparing for the move, and he’s got it planned out pretty well, I think.  He’s reminded me that while it may look overwhelming (and it does!  Something I can get frantic about, even fuuuuuhhhh-KING frantic!), it’s not that bad and once things start to move (like the furniture his parents are taking, once they move at the end of THIS month), it will get easier and easier.  And he not only reminded me, he stressed this: on November the 1st we ARE flying out of here to CA.  I was beginning to lose sight of that.

We’ve talked about it before, so I won’t badger you with the details, but CA, especially Eureka, is necessary for us: food, cost of living, constancy of the climate.  I wish it wasn’t across the country, but it is, and so there we are.  This is a time of real introspection for me, figuring out what obligations I have here, if any…and what onus do I lay on others that I should not, that I have no right to expect others to do or be?  I’m having to re-examine my ideas about interactions and letting go of the dreams I have held as truth.  I have acknowledged the facts, the truth of the actual situations, and accepted that what I thought should be, never will.  And that it’s okay.  It was never going to be like that, was not for the generations before me…why should I be different?

I will appreciate phone calls, Skype, or Facebook (a couple of things my grandmother would have killed for when I was little) to keep in touch with friends and family, to see pictures of my grandchildren and keep track of what’s going on.  In some ways, the social media of Facebook has us MORE connected than if we all lived in the same neighborhood…no matter where in the world we are.  I look forward to keeping in touch with everyone, as much as is ever done.

I’m not afraid of being crazy, or losing my memory.  I’m only afraid of not living the life I’m supposed to be living because I’m so afraid of losing my mind or memory.  This has been a time of deeply profound reassessment for me.  Or as my Beloved and I talk about this, using technical terms: I have just upgraded my OS from XP to Windows 7–and not only that, gone from 32 to 64 bit.  Even once the actual OS successfully upgrades, you then have about 13 reboots as it adds the new dlls, the new drivers, and so on.  I can only be lucky enough to have the legacy hardware accept this new OS and not crash and burn.  I still have to re-download Chrome and configure everything, but I think, I hope, the new program is up and running.  We shall see.

In the meantime, I take it literally one day at a time, sometimes just this hour by this hour.  I am hoping that the new antidepressant (Efexor) will help; I am going to ask for something for the anxiety and stress, since the Clonazepam doesn’t seem to work really well and I’d prefer something a little less addictive, tolerance building, etc.  As I mentioned, there is a lot more drama to the trip to Richmond, but I truly cannot handle trying to write it down at this time–it still stresses me out.  Not trying to be mysterious, or get you to buy my next book, but just letting others know that shit happens, and you can only muddle through it the best way you know how, hoping to come out the other side still mostly intact.

I am still me, but I have changed and I think am still continuing to change–and that’s mostly in my head.  Need to do a LOT of meditation and contemplation, once I can “ohm” without falling asleep.  At this point, my Beloved is a better Buddhist than I am…and that kind of smarts.  Let go, says the Buddha.  Let go.  Apparently, there are things I still need to let go of.  I’m trying, trying my best.  Think that’s all that can be asked of anyone.



One thought on “Family, Illness, Fear and Loathing in My Own Life, Act II

  1. You asked me how long it would take… the answer was – and remains – as long as it takes. It’s entirely possible it may take arrival – and time – in Eureka to finish the upgrades. If so, that’s fine. I lucked out, in a way, having my own … episode resolve itself in six days at the end of April and beginning of May in 2012. That, however, was PRECEDED by over two MONTHS where the prior OS deteriorated rapidly and I had a chance to come to terms (grudgingly) that I really WAS “broken” and needed to be fixed. When we first saw our PCP and he handed me the Xanex and I handed him the STD/FMLA forms, I was (over)confident all I needed was a month of rest and a little help from the medical pharmacopia. A little over two months later, and things seemed stable-ish, but I really wasn’t getting “better” in any meaningful way.

    So, on MY birthday (symmetry here, you’ll note) I received the denial of the appeal for my STD… and I came apart. The next day I checked myself in for evaluation and therapy. The environment was (almost amusingly) “safe”, and I was surrounded by people just like me… which is to say broken and trying to put themselves back together. Some were doing a better job than others… and at least one had given up and was only pretending until they would let them out. It took me six days to get where I felt like I had enough “structure” back together to handle the open world again… so that helped a great deal. But as you should recall, even with the new OS running correctly after six days, with the new meds it took me MONTHS to “learn” to “use” the new operating system, and an awful lot wasn’t where it used to be! Imagine my surprise when I right-clicked and got a completely different menu! Or I hit Fn2 and instead of saving my document it asked “are you sure you want to reply to all?” I had to re-learn what most people take for granted: what it’s like to experience a more “normal” range and level of emotion, and even then it took (still is taking) a lot of effort to really settle down and confidently use the new software with confidence like I used to do.

    In the process, I’ve actually become a lot more Zen about… most things. I’m not ready to give up meat, or live with only a robe, stole, shoes, a small bag and a visor cap to go with my glasses! But I’ve concluded a couple things from the “adventure” on my side:

    1) Most American-written books on Zen are about as useful as MOST so-called “self-help” books. Let go… yes, but also know when to hold on for dear life.

    2) That Dali Lama fellow is pretty smart, but I’ll point out even he acknowledges there IS no “perfect” world, and even if ALMOST everybody really lived a Zen life, there would always be SOME “troublemakers” and therefore some people would have to follow a path to protect all the rest from those troublemakers. His way is NOT peace at any cost… and that goes for inner peace just as assuredly.

    3) Being true to your own nature is the most important possible thing for a meaningful life. If you lie to yourself, or let yourself become one or more of the masks you’ve had to don for family, friends, loved ones, employers or even total strangers, then you can NOT live YOUR life… you’re trying to live the life of somebody else. How can such a life be genuinely fulfilling? Part of YOUR journey – like mine – is going to be spent peeling away the masks… call them expectations or illusions or whatever you like. But only when you get to that hidden, bone-white face which hasn’t seen sunlight since perhaps you were a small child will you be able to really evaluate where you stand, where you DESIRE to stand, and if the two are not the same, begin the journey towards where you desire to arrive.

    4) A friend once told me I was Daoist, and I’ve started researching the Dao De Jing… and I’m finding that while I’m too “Western” to accept some of the overly-collectavist aspects, by and large he was right. And one of the core principles is that you can only know something by knowing that thing’s opposite. How can you know light if you never experience dark? Beauty without ugliness? Kindness without cruelty? While we may (should) strive to eliminate the things which are unfortunately rewarded by the Western Paradigm (greed, selfishness, narcissism, lack of simple empathy, and lack of something resembling a conscience which isn’t dictated by some religious rule book), we can not appreciate those virtues without experiencing their opposites. A caring, generous, humble person only has meaning if one has experienced the cruelties of a psychopathic individual obsessed with their own desires and empty of any connection to other human-shaped self-mobile objects except to use them as tools or obstructions to be eliminated in the most expedient manner possible.

    What is Zen? Zen is truth. But as Jedi Master Obi-wan Kenobi told his student Luke Skywalker “the truth depends greatly on one’s own point of view”. And truth changes as relentlessly as life changes. Riddles, Koans, meditation and even exercise and a “clean” diet are only ways of opening yourself to the truth… from your own point of view. WISDOM, in Zen, is learning to recognize other people’s truth and understanding how it differs from your own, and that neither of you is necessarily wrong… but if their truth seeks to obliterate yours, it is most certainly NOT Zen to “let go” of your truth … or your convictions.

    Am I a Zen master? Please – my surgical scars hurt when I laugh. But I suspect, despite all the reverence and proof of his holiness’ grasp of the truth, he would almost certainly laugh in his special way and tell you “me? Master? hahahaha! No! YOU, who ask the question, are as much a master as me!” Tell me I’m wrong about that… I bet you could even hear him saying it when you read it.

    Our paths have crossed, and until and unless in time something pulls them apart, our journey is together. I look forward to our “letting go” of everything. Say it with me again: 2 purses, 2 carry-on bags, 4 70 pound bags, and maybe two more larger and heavier bags… plus a half-dozen or less 18″ cubes weighing under 70# a piece with a single exception. That’s it. We’re going to arrive with a mailing address, as many as 8 pieces of various luggage and a half-dozen boxes plus our clothes and our purses. It’s not “asceticism” but it’s for sure a VERY clean start for both of us. We won’t even have a car or a home address for the first day or so.

    And we WILL be out of this current residence by 5 PM EST on 31 OCT 2013 and WILL arrive in Eureka California in a rented car on or about the late afternoon of the 02 NOV 2013. These facts and dates are as set in stone as the granite faces on Mount Rushmore. If we have to make it up as we go along, then we will. How long will it take us to get fully up and running? As long as it takes. But it will be in a place of our mutual choosing which innately will work to improve the health, purity and strength of our minds, bodies and spirits. Ocean water; Pristine forest; Food which will make us healthier not sicker without having to bend over backwards not to miss an ingredient; Money which will automatically stretch further; And a community which believes in the idea of a living wage and REAL small business entrepreneurship. Oh, and a choice of swimming pools to exercise and build the physical strength, stamina and health which we have slowly watched bleed away for the last years.

    Zen. As Master Yoda says “Do, or Do Not… there IS no ‘try’.” Try and either succeed or fail, or do not try and fail automatically. We will Do… all that remains is to see what outcomes our joined path will reveal themselves to us on our new journey. What is it you always say to people? “If you don’t like your life, change your choices.” Well, we’ve changed our choices, we’re DOing what we need to so we can bring those changes about in reality, and even failure will be far better than NOT doing and continuing to deny our true selves and live a life which only being half lived where and how we are. I’d tell you to have faith, but that would be a bit too ironic and inappropriate. Instead, have confidence that you will DO the best you can with whatever resources you have or can acquire. And also have confidence that you will NOT DO this alone, because as always – as we’ve repeatedly proven to each other in crucible after crucible – I will be DOing right along side with you and we are together far more than the sum or our parts… and if we fail in the DOing, then we fail but will be better for having DONE with purpose and clear focus on our shared goals.

    I love you. Never doubt or forget that. Have confidence that I can and do have strength you can use even when I am at my weakest and worst, just as YOU always have strength for me even when YOU are at your weakest and worst. You are my wife, my mate, my shieldmate, my partner and my friend. Family is from the Latin root meaning “familiar”, and I fear we’ve allowed too constrained a meaning to come into common use; Our family is those we choose to have close enough to become familiar, and there is nothing genetic about that. My parents showed us both a lesson about that during my illness when they made certain YOU were cared for as if you really were their daughter, not daughter-in-law. That is a choice they made based on who you are and who you are to ME. We’ll build a new “family”, because somehow no matter what, people kept showing up on our doorsteps before we met each other… why in the world should that change just because we displaced 3,500 miles (give or take) to the West?

    (Please ignore the time stamp, or you’re going to fuss at me.)

    With endless love and truth,

    your Beloved.

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