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Soul Friends

When I moved into Battery Park Apartments a year ago, for a week I liked most everything.

building front

Battery Park Apartments

Then, after a week of being up and mostly liking everything, I crashed and hated everything – especially my neighbors. . But the symbol of what I wanted to avoid in my neighbors – the woman I most wanted to avoid (she helped me to write this part – and insisted I use her real name) was Diana the woman out in front of the building – all day every day, in overalls every day.  Chain smoking all day every day. Smoking is not allowed anywhere in the building. Like light the next cigarette off the last cigarette just before it burns your fingers – all day every day. After long hard struggles over a couple of years to get off of cigarettes, I had eight years ago gotten free. Her especially I wanted to stay clear of.

with diana

Diana with my Toni (RIP 10/1/18) – they adored each other.

So I went three weeks down.  Then I had a stroke. It didn’t kill me. It didn’t leave me paralyzed – or with any long term symptoms except some balance issues, and the risk of having another.

Three days later, I checked out of the hospital a new man. I had had my brush with death and had come back from the brink.  I was more than happy to be alive. My depression had passed and I was again wonderfully up. I wanted life – all of it. I wanted to embrace my new apartment – including my neighbors.  So when a friend picked me up at the hospital and dropped me off in front of Battery Park apartments with my little overnight bag there were no parking spots. “No I’ll be fine getting myself in, really”.  

In front of the building, the icon of Battery Park Apartments – the woman with the overalls and the cigarettes. 

“Ok, I’m gonna make friends with her first.”  “Hey, how ya doin?… Nice day, huh?… Can I bum a smoke?”

From there began one of the most amazing friendships of my life.  I discovered that – although her schooling, back in Mexico and here in Chicago was sparse and lousy – Diana was extremely smart – brilliant in some areas, interesting, a great communicator… able and willing to share deeply about herself as well as being a world-class listener.  Extraordinarily generous.

To qualify for the rent-controlled senior living facility, I had to reduce my income. I had to give up the job I loved and which was perfect for me as a cashier at Earth Fare. I made a deal with the Devil. I left my beloved job to live in a high rise apartment downtown – none of which agreed with me.

By the time I had lived there 8 months, the life energy had dripped out of me – drip, drip, drip. I was hospitalized for suicidal depression. I came out of the hospital after a week feeling good and staged the triumphant Majo’s Comeback Tour poetry concert. Two weeks later I was back in the hospital – for two weeks this time and this time nothing helped – I came out after two weeks as depressed as when I went in.

One morning at 3 a.m., a week after I got out of the hospital, walking my beloved dog Pancho through the deserted streets of downtown, it got clear to me: “I’ve lost my integrity. I gave up my job and moved to a high rise downtown because my many genuinely loving friends wanted me to – thought that, after two years of genuinely too much moving around, it would be good for me.”

By that afternoon I had gotten my job back and had started making plans to move. Having reclaimed my integrity, these changes came startlingly easy. Diana and I are clear that we are soul friends and will never let go of each other.

My bipolar disorder is still very out of control, but I am consistently happy. A few things give me respite from the physical pain that is the core symptom of my depression. Reading the Washington Post online distracts me from the pain a little. My dog makes me happy. I’m writing a lot and that makes me really happy. Engaging with friends – even on the phone – makes me happier still. But the thing that consistently makes me really happy is serving my customers at Earth Fare. It’s show time. I get to use all my people skills, especially my passion for validating people and my gift for comedy. People leave my line happy. I’ve started posting my work schedule on line so my friends and devoted customers can come to the store when I am there.

Now there are the changes at Jubilee. I don’t know Amy – have never talked with her. In a series of exchanges with her on Facebook, I discovered that we are on the same page spiritually.

In the middle – still – of some fair level of chaos and change, I really do believe that all shall be well.

(Read the – very different – 15-minute version of this story, featuring the “ersatz family” of Majo, Diana and little yorkiepoo Toni here.)

 

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Tobacco is yang.

My old macrobiotic friends, obsessed with Eastern medicine, mostly smoked – at least some of the time.  They had an explanation for it.  “Tobacco is yang.  When you are too yin – expanded, ungrounded – you crave to be more dense.  Tobacco helps with that.”

There is no question, in my experience, that I more crave cigarettes when I am manic.  The craving can be absolutely irresistible.  It has become for me a diagnostic criterion for mania.

Two weeks ago I had this kind of craving for tobacco.  I was, indeed, more manic than I had been for a long time.  Was it the Cymbalta – my new psychiatric drug that is touted to help both depression (after four brutal weeks of depression) and physical pain (the key symptom of depression for me) – which is neither helping my depression nor my pain, but I think is actually producing a toxic reaction?smoking old head

I picked up a pack of cigarettes and they kind of helped.  They didn’t really take the edge off the physical pain, but they were a familiar comfort – a little treat to reach for.  After ten months clean, this was actually a huge setback for me – but I was so out of control that I couldn’t seem to stop myself.

After two weeks of smoking, my body seems to be re-asserting itself.  My lungs have had enough.  I think my whole body is hurting.  It is, actually, the very last thing I need on top of the other assaults on my bodily/personal integrity.

I just went outside with my dog for a last pee – and what i intend to be my last cigarette.  I will go to bed now and sleep it off. Tomorrow I have Jubilee and several other positive experiences.  It’s a good day for a new beginning.

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Usetabe, my mania and depression would each wait for their turn.  They would politely wait for the other to spend themselves and then they would come back.

(This is not totally true.  One time probably 20 years ago, I was driving through Chicagoland and, over the course of 30 minutes, watched my state change from depressed to manic.  I swear I heard the mania say – I think out loud – “I’m back – and I’m not ever going to let you out again.” Dream on.)

In the last two weeks, I’ve been having an experience I never had before: mania and depression (which means for me painful physical contraction) have not been literally co-existing, but very rapidly alternating.  My cycles usually mean 2-3 weeks up and 2-3 weeks down.  Lately, this more “fair” alteration has been getting way more imbalanced: four weeks depressed, three days manic – stuff like that.  The sequence has not been totally without logic.  The issue seems to be engagement.  When I wake up at night (and am in no kind of connection), I am in pain – enough so that I get up at 1-2-3 o’clock and go looking for diversion, anything to take my focus off the pain.  Some things help:

  1. reading the Washington Post online takes my mind off the pain.  (I have a pathological obsession with this year’s presidential politics.  I’m about to put my new “Warren” bumper sticker over my old “Kamala” bumper sticker.)
  2. Better is to be richly engaged with a good friend – like my friend Amanda last night, on her beautiful front porch, with our mutual fascination by my psychological process (and her commitment to keep me alive) and our mutual admiration for my little dog Pancho.FB profile 4-19When I took Pancho for a walk – and me for a cigarette (see “Tobacco is yang”) – the pain tried to come back, but mostly still did not because I was still engaged with Amanda.  I was going over something she had said.  I was thinking of things I wanted to say to her.  I had left her physical presence, but we were still connected – and that protected me from the contracted depression.
  3. the best distraction for me these days is cashiering.  Customer service.  I have to be on.  Focus.  I’m living out my mission.  I can get through a whole 4-5 hour shift and only feel pain during my break.  When I swipe out at the end of my shift, the pain starts to re-assert itself and is in full force by the time I get to my car.  Corporate has been cutting the work-hours for every department in the store and I never get the 24 hours I theoretically signed up for.  I always wish for more hours, not just because I need the money.

 

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When I talk about “depression”, for many years now I have mostly meant very painful physical contraction – like every cell is in a vice.  It’s my little code.  A long ago I gave up trying to tell psychiatrists about it, because they didn’t know what I was talking about.  It didn’t fit their models, they apparently had never talked about it in school – so they couldn’t deal with it.  They pretended I hadn’t said it.  They translated it to the mood changes that for them mean depression.  They argued with me about it.

Sometimes the physical contraction precedes the mood change by 1-5 days.  It can get depressing being in chronic pain for days on end.  I once went through a seven-day cycle of “depression” that was strictly physical pain – it finally lifted with never a mood change.  The pain doesn’t co-exist with mania – they alternate like mania and depression.  A clear diagnostic that I have shifted into a manic state is that the pain is gone – maybe immediately, maybe evaporating over the course of a few hours, but finally totally gone.

Lately I have again gotten much more assertive with the psychiatrists about this.  “The despair that twice in the last five months brought me so close to taking my own life was all about physical pain that had lasted longer than I knew how to tolerate (40 days – I know, I’m a light-weight) and I could think of no answer but to do anything I could to escape it.  You must treat the pain!”

They have lately been listening to me, taking me seriously, and trying.  They gave me muscle relaxants – so far no help that I can tell.  They suggested Vitamin D and Tylenol, which I have used but never seen any help.  They gave me a benzo – ativan.  I seem now not to be able to sleep without it, but I can’t tell that it has helped with the pain.  They put me on Cymbalta – which, when it works, is supposed to help with both depression and physical pain.  My mania and pain are worse and I think I am having a toxic response to it.  My shrink reduced it, but I want it reduced even faster.

 

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Something New (2007)

I am old
This life is old
These bones are old
These thoughts, old
These fears, old
These hopes are old
These dreams are old
From where might come something new?

I have searched the horizon
For a sign of hope, from anywhere
My ship to come
A rescue plane to pick me up
From this desert isle
“This is Radio Majo
 
Come in, come in – is there anybody out there?”

I’m giving up
There’s nothing out there
But the ghosts of my life past
The phantasms of my wandering
In this landscape of broken dreams
Giving up…
Giving up…

But what is this?
When I give up
Something rises…
When I give up
Something rises…
When I give up
Something rises…

I have become so empty
Empty of hope
Empty of the will to try
Empty of sails on that so-empty sea
Empty of a dream of what might come
Empty of what I thought was me

I have become so hollow
So transparent
So lacking in mass
That my empty has turned to light
My empty has turned to light

This gentle breeze
Stirring beneath my hollow limbs
Lifts me – oh so slightly
Up
The golden sun, which shines on
Nothing that I want
Begins to shine
Through me

I have become
So empty
So hollow
So transparent
That the breeze lifts me up
And the light fills me up
My being in this world
So exhausted
So used up
So empty
That I am become
A being of light

Like no one I remember
But one I recognize
Was hidden, covered
So encased in doing
‘Til I could do no more

I will continue to give up
Life will show me how
It is one more thing that I will not do
In this empty, used up

Hollow, radiant now

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After four weeks of progressively more brutal “depression” – mostly meaning painful physical contraction – I surfaced on Wednesday and had three wonderful days of just feeling good. Then this morning the physical contraction was back and I feared that I was starting to crash again. My little four-hour work shift as a cashier at Earth Fare was tremendously therapeutic today: it was so engaged, so fast-paced that it distracted me from physical pain. And, since there was nothing wrong with my mood, I mostly had a good time.

I got myself to Howard’s roast last night and for the first 90 minutes had a really good time: the roasters (“purifiers”) were extremely funny and I laughed a lot. I think it was from being in an audience – not “keeping myself going” – that the physical pain came back with a vengeance and continued to build as I left early and as I made it home. The pain I am feeling in this moment feels worse than anything life dished out in those four weeks – and some of that was quite bad.

8-10-19 - contraction

“Depression” as actually very painful whole-body physical contraction: Saturday night, 8/10/19, 11 p.m. at Monika’s house where I am house sitting.

I really want to attend Howard’s last service at 11:15 tomorrow. I feel like – after 15 years of pretty committed membership in this “spiritual community” (not to utter the dreaded “church” word), I owe it to myself and also to Howard. But based on how I’m feeling right now, it feels like a long shot – even though I know from experience that staying in bed will cause the pain to grow.

I will keep the ringer on my phone on, and – if someone were inspired to give me some very informal phone coaching between 7:30 and 9 (encouraging, pushing me, beating me around the head and shoulders), that might get me going. There’s a very real possibility that I would give lip service over the phone – maybe even momentarily believe that I am going to get going – then crawl back into bed. It would be miraculous if someone were to feel inspired to come over to Oteen/East Asheville to pull me out of bed and shove me out the door. You wouldn’t need to go to Jubilee unless you felt moved to do so.

I feel threatened about the rest of the day, when I have nothing scheduled but some loosy-goosy plans to go grocery shopping and shit. The rest of the week is not much more reassuring, because corporate has cut our store’s hours again and I am working only 12 hours instead of my negotiated 24. Busy is good for me right now. There are a couple of kinds of volunteering I want to be doing – but getting going on those may also require some phone counseling/cheerleading.

Thanks for any way you can support me right now (828-582-9822):

  • read this
  • send me responses to this
  • go with me to lunch
  • sit with me in Monika’s wonderful backyard – with or without a beer
    – walk on the beautiful Mountain-to-Sea trail (two minutes from our back yard to get on it. (until the end of September!)
  • -talk with me about my philosophy of customer service and my mission at Earth Fare
    – go to a coffee shop or restaurant together (keeping expenses pretty minimum)

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Better now

Two nights ago, Tuesday night, I had two 30 minute naps – each punctuated by a bizarre, disturbing dream that woke me up.  Then, around 1 in the morning, I got up and just stayed up.

I was coming off four weeks of being depressed – more grimly so each week.  I knew that, according to my personal statistics, I was due to shift up any time – but there was hanging out there the specter of the winter, when I was depressed for four months, progressively retreated to my bed and was finally hospitalized when it seemed I was on the razor’s edge of taking my life.

In the last few months, a new personal pattern for me is that the night before my energy is about to shift up again, I am unable to sleep all night.  So Wednesday morning I carried hope that my cruel biochemistry was about to lift me out of the depths of depressive pain.  But the other, even more telltale sign of finally coming up for air, is that the contracted pain throughout my whole body that is the most central symptom of my depression, goes away – totally.  Poof, I suddenly don’t hurt.  But Wednesday morning I still had the pain, so I didn’t know what was going on – what I could hope for.  But the pain did finally let up and go completely away Wednesday afternoon and I have clearly moved into a manic episode.

with Jenn G 2-12-17

Performing with Jenn Garret at Jubilee a poem we had written together – a real natural high, life at its fullest.

Mania has, for me over the last few years, become a very positive state.

walk3

Walking a mile in her shoes – the annual charity walk from Our Voice.  Each year of my three walks I have worn different shoes (“A girl’s gotta have shoes”), but these red pumps that I rented from Asheville Community Theater fit me great and were, I think, really me.  It was hard to give them back. 

It doesn’t cycle way up high – doesn’t go out of control.  I don’t spend a lot of money (mostly never did – once bought nine pairs of nice socks on sale, but that was the most extravagant I ever got).  I no longer start big, ambitious, unrealistic projects that there is no hope of me ever bringing to fruition – especially when totally non-functional depression inevitably follows the mania.  I sometimes surprise almost everybody’s expectations of this too-nice guy by telling off or cussing out some jerk who is totally begging for it.  I don’t suffer fools gladly.  I really like this part of it.  Mardi Gras

Today, the day after coming up to breathe, my dear friend Amanda Graves was asking me about the previous weekend – which had been totally lost to bed, despair and isolation, easily the worst two days of the whole four weeks.

“So you had no work, nothing to keep you up.  You were totally incapable of reaching out to your friends.  Would it have helped if we had reached out to you?”  (I had made a lunch date with her and then cancelled it.)

“Absolutely – even if I might have resisted that reaching out.  Remember the previous Sunday, when – even though we had definite plans to go to the Tall Tales Isis concert with my friends Joan D’Entremont, Al Schlimm and Chris Rosser Sunday night – I told you in no uncertain terms that I had avoided Jubilee that morning and would be going back to bed by 7 and skipping the concert that night.  Because you were right there in front of me, you were able to beat me around the head and shoulders and get me to go – and I ended up having a real nice time.  When I was bopping all around the table in perfect time with the very upbeat music, you said ‘You don’t look very depressed now.’”

Now that I’m up and again wonderfully extroverted, I will naturally find great ways to connect with people.  Two days ago I told Lauren Fortuna that I could not provide a poetry “gift” at a Jubilee Sunday service because I had no inspiration and that – even after 15 years of a lot of commitment to Jubilee – I was liable to not get it together to go to Howard’s roast on Saturday night or final service on Sunday morning.  Now I know that I will go to both of those very festive, life-affirming events and will get back to Lauren about the poetry gift – which poem has not appeared yet, but I now trust will manifest itself.

How long will I continue to feel good?  A couple of months ago, after about two months down, I had an up cycle that lasted five days.  That seemed cruelly unfair.  But I have some reason to hope that I will be on the right side of the dirt for 2-3 weeks.

I hope to spend some wonderful time with many of you in these weeks – and maybe make some plans for how we can stay connected when I again lose the capacity to reach out to you.

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