Double-teaming the doctor tomorrow

The whole-body contraction and intense pain that are the core symptoms of “depression” for me (much more than mood changes) have, over the last three days, gotten worse. Whereas it usually takes a while to get in with my primary doc, I called this afternoon and got an appointment with him tomorrow morning at 9:15.
doctor

This is not Dr. David Clements, my internist at Carolina Internal for 15 years now – but is a lot easier on the eyes.

I really like to bring a friend with me to non-routine doctor appointments, to

 

– give me moral support and help me to not just be cognitive – to feel my feelings about it    all even as I think, to not numb out

 

– to help me be assertive, ask all the questions I have prepared and those which come up    in the course of the conversation

 

– to help me make sense of and remember what is discussed or I am told.
Could any of you: –

a) meet me at Starbuck’s in Biltmore Village at 8:45, then go with me to the appointment, which probably will start by 9:30 and – if they draw blood and stuff – probably be over by 10:30. We could debrief the session for about a half-hour either then or over the phone sometime later in the day or

 

2) if 8:45 is a little too early for you to meet up, then to plan the session with me tonight and meet at the office (2 minutes from that Starbuck’s) at 9:15

 

3) if it doesn’t work for you to go the meeting tomorrow, to spend a half-hour over the phone tonight planning the session and/or a half-hour tomorrow afternoon or evening debriefing it.
It would always be great for us to get together any time in the near- or medium-future – on the phone, face-to-face, or virtually – to talk about all this.
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“God is a ‘he’?!”

This encounter was only a little bit playful: I gave this woman some serious, only slightly playful shit for maintaining that God is a “he”.

It started innocent enough – genuinely playful, only slightly disrespectful.  It was early on a Saturday and I asked this 40ish woman my stock question: “What are you looking forward to this weekend?”

“I’m looking forward to praising God!”

Now I was not yet trying to make fun of her – I was totally tongue-in-cheek, but I was really just getting with the excitement and exuberance of her energy: “Wow, that’s great!  Do you think you could stick around here this afternoon and we could do some of that here?  That sounds like fun!”

I think she knew better than to join in with that bullshit, and I don’t remember the next thing or two she said.  The next thing that came into focus for me was that she called God a “he”.  A little later, I said to my friend Jeffrey, when he asked me why I felt a need to get into all this with her, that I was just manic and it was just too juicy – I couldn’t resist a good tongue-in-cheek faux fight.  I was channeling my dear departed mother.

God as an old man

“So God is ‘he’ for you.”

“Yes, of course.”

“You sound pretty sure of that.”

“Totally sure.”

“Why?”

“I just am.”

“Who told you that?”

“It’s in the Book.”

“What book?”

“The Book – the Bible.”

(Probably my most provocative, most blasphemous statement…) “Oh, that book is so old!!”

Them is definitely fighting words, but I think she maybe just couldn’t believe what she had just heard – was kind of in shock – because there was a long pause.  In that pause, I had a chance to organize what I believe.  “No!  No he, no she, nothing like that.  God is something altogether different.”

Up until now, this woman had mostly acted off-balance, confused by me.  This was the first time she got really angry.  She leaned in close to me and with a lot of intensity said “God is everything!”

I think this maybe had an opposite reaction on me than she expected.  I leaned back, got thoughtful, and kind of gently said, “Wow, that’s cool – I like that.  I can genuinely get behind that”.

With that, she seemed to feel satisfied – it kind of made her whole, after feeling so misunderstood.  I also felt satisfied – after all this conflict, it was really kind of a relief to reach a point where we could genuinely be in synch with each other.

Also at this point, her large order of groceries – which had made it possible for us to have this extended interaction – were all bagged up.  I think we both knew better than to say one more word, that might open this can of worms back up.  She paid me her money and – as far as I could tell, contented – went on her way.

I can think of no other reason than this good ending why she didn’t go to a manager and complain about me – certainly women (usually middle-aged or older women) have done so for much less – except my one second hypothesis, which my friend Jeffrey thought was the real reason: she was just way too confused by the whole encounter to know what she wanted to say.

Anyway, I just at that point – almost as soon as she left – decided “If I’m not getting written up for this, I’m not getting written up for anything today.  I’m having a charmed day and I can do or say anything I want.”  And I pretty much did – and I didn’t.

 

Majo tweets!

I am using Twitter to announce my Earth Fare schedule on a daily basis – and last week I twice did add a shift with just one day notice.  ( I also do announce my schedule weekly on Facebook, some time on Sunday – when I remember to do so.)

So if you want:

  1.  your Majo hug, even if it pisses off the people waiting in line.  I love to reassure the young woman waiting in line for her groceries turn next, “You don’t have to do this.”
  2. a new validation, which it is my mission to deliver each time someone comes through my line. (I don’t literally manage this every time, but it is my goal.) Today a young woman at Jason’s Deli said, ” I remember you – you’re the Earth Fare cashier who told me ‘You have a perfect nose’.  You don’t forget something like that.”  I neglected to ask her if her life has been in some way better for that.
  3. some little word of wisdom, like “the more foolish you can be every day, the better.”  I sense there are some coming that are even deeper than that :).

Come to my twitter feed: @johnmajo

If you do not yet have Twitter, getting it may open up whole new worlds for you.  Wouldn’t it be great (for some of you :)) to know, day to day, what Elizabeth Warren is saying – or Kamala Harris or Corey Booker? Even more fun than some other politicians who are even more closely identified with their Twitter feeds.  Marianne Williamson or #45?  Majo John Madden or I don’t know – Soupy Sales.

Soul friends

Last year I lived in seven houses in ten months.  Some of them were roommate squabbles – I hated them or they hated me.  One was a landlord issue: he hated us and we hated him. One of them hated my little five pound yorkipoo dog – the completely adorable Toni, who was clearly a menace.  This whole saga was as harrowing to my friends following my adventures as it was for me. They were afraid to read their Facebook for fear of what I might have posted now.

So when  my friends heard on Facebook that I was moving into the famous Battery Park Apartments, they did victory dances all over Asheville. Famous for the location – right downtown, directly across from the Grove Arcade. Famous for the amazing history of the old hotel.  Famous for the year to three years it took people to get in. (I was lucky and waited only a year.) Famous for nice large remodeled 1 bedroom apartments right down town rent controlled need-based senior living charging rents that all over town would get you a studio with free cockroaches.  Famous for the reputation that you could live there three months and not see anybody under sixty. Famous for the word that nobody ever moved out except on a gurney.building front

My friends were so relieved that I had landed there that a month later when in one of my bad moods I told one of them that I needed to move out, he said, “No you don’t.. No you fucking don’t.  If you so much as attempt to move one stick of furniture out of that fucking apartment I will come down there myself and rip that chair out of your feeble old hands and sit on your fucking chest until you get your head out of your fucking ass and agree to stay put.”  And then he told me what he really felt.

I have bipolar disorder that in 20 years my meds have never gotten under control.  I have no middle ground – I’m up or I’m down. In the interest of fairness, my raging biochemistry tends to give me roughly the same amount of time up as down.  In the really bad old days after I was first diagnosed, I once went six months up and six months down. I don’t know which mood was worse: flat on the floor or through the roof.  A few years ago I was for year consistently 2-3 days up and then 2-3 days down. When I was down, I knew that in just a couple of days I would be up again – so I knew I could ride it out.  But my life was total chaos. Lately I’ve been 2-3 weeks up and then 2-3 weeks down.

Some parts of my moods are relatively predictable.  When I’m moving – which has been every other week lately – I gear up for the move.  At four a.m. I’m throwing shit in boxes. After a move, within a week I am crashed flat on the floor.  As I was moving into the Battery Park Apartments and for the next week, I loved everything. I loved the layout of my apartment, I loved the views out my fifth floor windows. living room

So for a week I liked most everything.  OK, except my neighbors. What am I doing living with all these old people?  Yeah, at 72 I cleared the bar for living there ten years ago, but I’m not like really old.  I’m a young person walking around disguised in an old suit. So I kinda, in that first week, stayed clear of my neighbors.

Then, after a week of being up and mostly liking everything, I crashed and hated everything – especially my neighbors.  Old – I’m not old. Or disabled, mostly crazy – I just have a little bipolar disorder. 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 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.

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 the friend who had been caring for Toni picked me up at the hospital and dropped us 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.  She looked too young to live there – and it turned out she was. She had gotten in for a disability ten years before.

“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.

And adored my Toni.  Most everybody actually did – but Diana more than anybody.  And Toni, who mostly loved everybody, especially loved Diana.with diana

And we smoked together.  What started as sharing a smoke, then a couple, became a full-fledged habit.  Two days after having that first cigarette, I went to the smoke shop to buy one pack so I wouldn’t be mooching off of Diana, who clearly was of modest means. (I had no idea.)  When it was my turn at the counter, I totally shocked myself by ordering three packs. “Who is that voice?” When I got outside, I talked to that voice.  “What are you doing? I just want a few cigarettes.” The voice said back, “Who are you trying to kid? You’re in it now.”

Soon Diana became Aunt Diana for Toni.  Diana sat for her when I went out. Toni, who for some reason had stopped sleeping in my bed, napped with Diana.  Toni, who never really cuddled with me, with Diana would sleep here – up against the side of her head.

Diana then went from Aunt Diana to christening herself “Mama”. It accurately reflected her relationship with Toni.  We became co-parents. Never a hint of romance on either side: We have checked in with each other a couple of times. We are blessedly clear of that. But we had become an ersatz family.  When I announced to our smoking posse – all spokes in the wheel to Diana’s hub, people love to be with her – in front of the building that I had to leave to take Toni to the vet, to find out why she was walking even less than usual, Diana asked “Can I go?”  She dropped everything and didn’t smoke until we got out of the vet’s office. After running a lot of expensive tests, the vet said, “She has congestive heart failure. Like people with heart disease, she could have a relatively long life or she could die of a heart attack tomorrow.’

Diana and I digested the news together, we grieved together.  Our baby might not make it. Our little angelic being – who had always seemed to inhabit a rarified atmosphere, above this earthly plane – now seemed more precious than ever.  

Then came the liver disease.

Diana: “I still have a good feeling.  I think she will live a long life.” Me: “Her liver is shot, Diana – she’s not going to be here much longer.”

I still thought we might have her a few weeks longer.  When two days later my friends Karen and Lisa convinced me that she was looking terrible, that it was time to let her go, i realized how much denial I also was living in.  As I grieved, I feared what this conversation with Diana would be like. Perhaps, finally, this would be our first big fight. When I told Diana it was time to let Toni go, she was amazing, astonishing.  “Hey, you’re the real parent. You know her better than I. You hear her labored breathing all night long. You’ve got to make the call.” And she really, truly, totally fell in behind the plan.

I arranged for the Four Paws mobile euthanasia group to come to my apartment the next morning, Monday morning at ten a.m. I called a few of Toni’s favorite people to come be with us.  Amazingly, four of five were free – and each loved Toni so much that there was no question of them coming.

At the releasing ceremony, Diana was as strong as I thought she would be.  She held her baby tenderly. At one point, one of my friends gently said to her, “Maybe you could let Majo hold her now.” I had not even noticed that she might be taking too long a turn. The next day, we wheeled Toni in the stroller she loved three blocks over to Montford, to bury her in Amanda’s back yard, which she also loved.  I dug the grave, we together laid Toni in it. We cried.

A week later, i shocked everyone by saying that – still clearly grieving over Toni – I was going to quit smoking.  I had tried several times lately and failed bitterly. “I’m going to do it the right way this time – get lots of support from the state ‘Quit Line’ help resources.”  Toni’s death made me want life more than ever. “These things are killing me. I can’t breathe right any more.”

Diana and I had the conversation.  We no longer had our baby to pull us together. Toni died on October 1. If i stop smoking on my quit date of October 29, what about us?  I was very clear that there would be no more children to pull us together. “I won’t be ready to let another dog into my life and my heart for a minimum of one to two years.” Diana said, “I’m afraid I’m going to lose you.”  And in some ways she has. We no longer start our days with that first smoke of the day at 7 a.m. I no longer make several trips a day out to the front stoop. If there are more than two smokers out there at a time, my sobriety feels threatened and I stay away.  I hate the cold, while – even with her Mexican blood – Diana endures it out there most of the day.

But we both crave and continue this friendship.  I will leave the building by the front door even when my car is in the parking lot out back.  I will endure the cold for a while to talk with her. Her smoking for some reason never threatens my sobriety.  We go down to World Coffee on a warm sunny day and sit outside and she has six cigarettes. We wrote this story together.  

We are soul friends and we know it.  We will never let each other go – until one of us goes out on a gurney.

I have been totally clean of cigarettes since October 26 and have not had a craving. The Quit Line counselor the other day asked me the two questions: “How much do you want to stay off of cigarettes – 1 to 10?”  “Ten, no question.” “How sure are you that you will stay off them?” “Eight.” I could weep.

Hey, if you have any time after the show, you could walk with me the three blocks back to Battery Park to meet Diana.  Diana hates crowds and knew this was not for her. She was my first audience for the finished story the other night and gave the whole thing her blessing.  She’s sitting for Panchita aka Pancho – a five year old adorable female chihuahua, my totally loyal Mexican sidekick that I adopted two months ago.

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

Mania has, for me over the last few years, become a very positive state.  walk3It 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.

Suffering

I’m suffering. The core symptom of depression for me is physical contraction, painful tightness throughout my whole body as if every cell is in a vice.  Mood change sometimes follows this lead symptom – maybe 2-4 days later, sometimes not at all.  But is the discouragement a side-effect of experiencing so much pain?

This is my third week of depression/contraction, with the pain building steadily each day.  Not as much pain as some people experience – and with many of them (I think of a friend my age at church who has very painful back problems) it is genuinely chronic, there is no respite – whereas I know that inevitably (hopefully soon) I will get a few days or a couple of weeks respite.  The surest sign that my energy has turned up (“manic”) is that the contracted pain is reliably, totally, instantly gone – poof!  Sometimes long before I get speedy – if I do at all.

Psychiatrists and psychotherapists typically don’t know what I’m talking about when I relate this – they have never heard of it or read about it in their journals.  I went through a long period where I no longer talked about it because I had grown discouraged about mental health professionals understanding me.  I have encountered some other folks with bipolar disorder who recognized this phenomenon and said that they too experienced it – but maybe never before put it in words because they never heard anyone else put it into words.

Today, as I walked the Mountain-to-Sea Trail behind Monika’s house with little Pancho, my body was so tight that I had trouble walking.

But I’m not sad or discouraged.  I am as happy and encouraged about the direction of my life as I have been for the last several weeks:

  • I am really happy to have my job back at Earth Fare.  I don’t enjoy every minute – or even necessarily most of the minutes.  But I enjoy a lot of them – and that’s enough.  In some of those minutes I feel like I am living out my mission to make grocery shopping creative and fun, to validate the customers who come through my line, and to influence the younger cashiers in these directions.
  • I am thrilled to be liberating myself from Battery Park Apartments.  A very bright and resourceful friend told me the other day that, after a year there, it really is working for her – and for some people it really does.  But it was not working for me.  I had to move through some powerful inner resistance to get clear on just how bad it was for me – largely by being high-rise apartments and downtown – but I did finally get clear and within three weeks of that final clarity, by virtue of Monika’s generous offer for house-sitting, have extricated myself from it.  I’m on the ground, one doorway away from the outdoors, surrounded by trees. With a little luck, I will move into my long-term digs straight from here and never again sleep on the fifth floor – so far removed from the ground (which for this airy, ungrounded guy is a big deal).
  • I am very excited to be moving in with Tom Kilby, my all-time favorite roommate, and his wonderful son Ian.  Tom KAfter negotiating some details over a number of days, we just finally got to a solid “yes” yesterday, and today the three of us gathered at the house in Candler to continue our dialogue about what it means to live together.  So much open conversation right up front bodes well.
  • Robert had told me he didn’t know if his Wi-Fi would reach the patio out back, but just a couple hours ago – having purchased a l-o-n-g extension cord – I discovered that it does!  This means that – after a year of being imprisoned in an apartment with windows that open 3 inches – for the next two months I can spend most of my laptop time outside.

So I’m in a lot of physical pain that makes it hard to get up in the morning and hard to resist the call of the bed (let me get unconscious/escape the pain!) early in the evening (like now, 6:08 – thinking I may go to bed when I finish this, or maybe now, without finishing it).

And happy!

Why I’m getting off of meds

Today I will be asking my psychiatrist for her support and guidance as I gradually wean myself off of psych meds.  This process will probably take several months.  Here are some of the words I hope to remember to say to her today. Maybe I will just start the session by reading this. It takes 3 minutes – my insurance is paying for the 30 minutes. It’s my life at stake.

My dear friend Amanda – deeply grounded social worker and psychotherapist of many years – likes to say to me, “You have taken these meds for 30 years. You feel totally sure that, aside from 6 months on your first med ever, Zoloft, none of them has ever helped you. But you keep taking them – why? You know there are risks from taking such powerful medications for so long. Why don’t you just get off them all and find out who you really are?”headache-pain-pills-medication-159211

That last sentence came not from Amanda, but from me. Why do I continue to take these meds that I feel sure are not helping me? Guilt and shame. I feel that anybody who experiences such powerful and painful ups and downs “should” take meds – it’s just assumed in this technological society, right? And, when people – hearing for the first time that I have bipolar disorder – ask me, so often almost the first words out of their mouths, if I take meds, I want to be able to say, “Yes.” To say “No” would risk their disapproval, their judgment that I am irresponsible. Most of them assume innocently that meds make these things better – not realizing that for a lot of us, not just me, they really don’t.

I have recently taken some very big steps towards my own integrity. Since I returned to the job I loved, but gave up in order to keep my current subsidized apartment – a move that so many of my loving friends strongly pushed a year ago – and am making plans to leave this apartment, which i have never liked, the life force is flowing back into me. That life, which had drip-drip-dripped out of me for the last year, leaving me finally so depleted that twice in three months I drifted precariously close to ending my own life.

Now that I am reclaiming my integrity my listening to my own inner guidance, my inner landscape is no longer one of darkness. Even during the difficult biochemical turndown that hit me in the last week, I am stronger and more optimistic than I have been in years. The choices I have recently made towards my integrity have released a new level of confidence, integrity and assertiveness that have me handling all manner of little decisions and interactions in ways that support my aliveness.

The next step towards my aliveness, my integrity – quite obvious to me – is to stop taking the pills that I resent, that I have never trusted, that I think do me no good, and that have so many subtle and obvious side-effects. I want to get off them and see who I really am. Any risks in doing so are, to me right now, totally acceptable.