Due to a glitch in my insurance and the Latuda company’s lack of medication, I went about a week without it. Might have been more. I have been back on it for 4 days now, but have fallen into depression. I wasn’t sure at first, but after sleeping 20 hours a day 3 days in a row, I think that qualifies as depression.
And the crying.
I hate the crying.
The welling up of tears for (seemingly) no reason. The way they fall unabated, no amount of logic stopping them. They just turn on and off at their own whim.
What am I sad about? Nothing. There is no precipitating factor here, merely biochemical.
I was living with 5 gay friends in a condo, way back in 1979. I was 18 and out on my own for the first time. Going to the Parliament House, the big gay bar in our city, was The Priority in our lives… above eating and, of course, paying our rent.
So when rent was due and we only had $500 between the 5 of us, 3 of us decided to take our winnings, er… rent money… and head to New York City. Living in Orlando, that was quite ambitious thinking, but we were all young and stupid and believed anything was possible.
We stopped by my dad’s house so I could grab the Oldsmobile Delta 88, an enormous light blue wonder that had one back window that wouldn’t go down, another that wouldn’t go up, a trunk that would not open and a hood tied with metal wire to keep it down. I had to dig around for the keys and license plate, but found those and we were off, in my dad’s now-stolen car.
We packed that car with all of our belongings: clothes, shoes, books… and for some reason, several jars of peanut butter and jars of grape jam. (Jars were glass back then, no plastic ruining the environment in the olden days.)
I remember Bobby taking the first shift in the back seat, laying sideways on all the stuff, his shoulder hitting the roof resting on the huge pile. We tried to open the trunk 100 times, to no avail, so finally resigned ourselves that sleeping like the Princess in the Pea was a part of this adventure.
Bobby, a bright-red redhead, curly hair down around his shoulders, ached to be a drag queen, dancing and miming songs at every chance. Even up on his back seat perch, I laughed hysterically, seeing him in the rear view mirror, holding a hairbrush and lip synching to “I Will Survive” on the radio.
Bobby was a liar, telling us, with complete conviction, that the Oscar Meyer little boy was his brother. At first we were awed, then the lies built onto each other and when it took a teasel to figure one truth from another, we just shrugged and laughed no matter what he said.
The other roommate who came with us was Scott, a gay guy I had known since junior high. Scott was so smart and clever, but more of a book nerd than either Bobby or I; he was a good balance for us. Scott found his way into laughing for the sake of laughing on this trip, which makes me so happy since he died of AIDS not 3 years hence. I was very glad to witness his joy. Bobby also died of AIDS a couple of years after Scott.
During our trip of 1979, AIDS was an unknown. Sex was with utter abandon. The worst sexually transmitted disease one could get was herpes and that seemed like a social death sentence. Little did we know then, herpes would be almost benign.
The first person I knew of who died of the Gay Cancer was Fat Matt. I was fat, too, and Fat Matt and I talked a lot about dieting and trying to lose weight. Being fat as a gay man was not good… being fit and being gorgeous were (and are) a gay thing. So when Matt began losing weight, he was ecstatic. He had no idea what he was doing to lose so fast, but he was thrilled. His sex life picked up, his self-esteem soared… and then he passed through thin, from healthy to gaunt in a few weeks. Matt was gone 6 months after he began losing weight. None of us knew what happened. He was such a dear, fun friend, the bar seemed odd without his flouncing around, showing us his hippo dance from Fantasia.
Then there were others, not fat men, who began losing weight, then their lives. I remember standing in the drag bar, being told two dear club friends had died during the week and reeling with complete confusion about what was happening. It would still be 6 months before the words “Gay Cancer” would be said on the evening news.
Being gay in the late 70’s and early 80’s was still taboo. No “Don’t Ask Don’t Tell,” no gays in the military, no gay marriage. Homosexuals (and I, the fag hag) clung to each other when our parents changed the locks after throwing our belongings in the front yard. So when our gay friends were dying, we were never invited to the funerals, but held our own memorials at the bar. We would drink to our friends, huddle together, giving each other love and comfort. When there were so many of these bar memorials we’d become numb, we realized we had all run out of tears at the exact same time.
Mom and I sat at the vet the other day, in that tiny side room with the dogs hiding under our feet. We wept together, apologizing for all our past hurts and wrongs. It was extremely freeing to know my mom forgives me for all those horrible kid things I have done… and she has heard that I also forgive her for her own parental difficulties.
Deep inside my colorless cocoon, I have a vague sense of other lives nearby.
I slither through their reality; where is my own? Surrounding myself with the darkness of my depression.
My mirror’d existence bursts into color, fireworks exploding with energy that drains my body, but never my mind.
Having Bipolar Disorder 1 is, quite literally, opposing colors of my brain. I see auras anyway, but during a manic episode, the colors scream off my body, tsunamis of energy crashing into my brain again and again. Voices screech… or whisper… I, never knowing which will be next… raging about how I look, feel, need to act, need to fly, need to find this or that, things that are elusive even after hours of mentally and physically searching.
Exhaustion never comes.
When the electricity finally dissipates after months of zapping me, I collapse into that dark world once again, struggling to keep breathing and not smother myself with the thought that this will go on forever.
Reaching outward, always outward, needing several hands to keep me alive, I am fed my medication, waking only to swallow, then sleeping yet another 23 hours.
Writing is my emotional gauge. By how many words I write in a day, I’m able to see where I stand psychologically.
Not writing for days, weeks, months… I am in that dark place and need help. Too often, because I am alone, I do not recognize the need for many weeks and, by then, am buried by the pain.
However, when I write 20,000 words in a day… several blog posts for me, blog posts and essays for work… long emails to friends and family… run-on sentences with divergent topics… it is they who sense my need for help and their well-rehearsed phone calls are made to see who can get me to the doctor the fastest.
Walking the tightrope, umbrella in hand, I teeter, side to side, always searching for that inaccessible balance.
When I first went to jail in Orlando, I was freaked out and so very alone. I got to talk to my former partner Zack and my other former partner (we were in a triad at the time), but those calls were limited and I spent the majority of time bawling my head off.
I needed to write about my pain. In the worst way.
I did not know how to get pencil and paper yet (through the commissary) and when I did, I ordered it right away. Still, it took a couple more days before I laid hands on writing utensils.
In the meantime, I came up with a creative way to “talk” to my friends and lovers.
I typed on the computer to them. Not a real computer, of course, but a keyboard hovering in the air in front of me. And I typed. A lot.
I was put in my own cell for a few days, which was heaven because I could pee and poop in a tad of privacy except for the one wall made of bulletproof glass.
Once in a cell with other women, the peeing and pooping was entertainment for them and I did everything in my power to wait until they were gone from the room; not always possible. Being extremely fat, it remains one of the most embarrassing experiences in my life, this doing bodily functions in a room with 3 other women.
But, at first, I was still by myself. No one to talk to except the tearfully short conversations to my partners.
So, as I said, I wrote on an invisible computer.
I poured out my fears, sadness, confusion and concern that I would never leave jail ever ever. (Which was ridiculous, but I could not be convinced I would not die an old woman in there.) I wrote to my Disney newsgroup friends, telling them how, as I tried to go to sleep, I would “ride” It’s a Small World or even the WEDWay PeopleMover, rides I knew by heart. I told them how I could hear the music, the announcers, feel the PeopleMover slowing at the right spots or flew over Captain Hook on the Peter Pan ride.
I wrote about how I laid on the flat mattress with no sheet or pillow and only a wafer-thin blanket in this freezing place, singing songs from a myriad of Disney movies. Over and over in my head, I would pull Disney memories and walk or rode or sang them to myself. And I told my friends this as I typed the soundless clickity clack of invisible keyboard keys.
I was absorbed in my “discussions” with my friends. Sometimes in non-existent chatrooms, all of us sharing stories of what we were doing that day or where we would go on our next Disney outing.
So when I heard knocking on the window and looked up, I was rather surprised to see 5 faces watching me. I did not stop typing, my fingers mid-air, moving continuously.
“What the fuck is she doing?”
“That bitch is crazy!”
“They better not put her in with me.”
I glanced up again to see a couple rolling their eyes at me as the all turned away to do something else in the Day Room.
And I smiled that they could really have thought I was crazy… and might just leave me alone to my writing.
I’ve written since I was about 8-years old, journaled since I got my first diary on my 8th birthday. You know, the kind with the tiny lock on it?
When I was 11, I let Suzette read my diary. Stupidest thing I ever did. In there, I wrote that I’d tried smoking and she went and told my mom who let me know if she ever caught me, I would be eating a pack in front of the family.
I stopped writing in a journal for a couple of years, but when I was 15, an older friend said I had a lot to say and gave me a lovely hard and cloth-covered journal with no lines in it and an amazing Japanese-inspired cover.
I wrote in it a lot, wrote about my boyfriends, my gay boyfriend (when I was 16-years old), going to the gay bar (when I was 17-years old) and sleeping with my first girlfriend Kelly (at 18-years old). By then, that one book had turned into 2 and then into 3.
My dad had a new girlfriend and, when I was 17-years old, I came home from school one day and my Japanese journal was laying on the dining room table. I was horrified. She had gone into my room, snooped to find my journal and then read it aloud to my dad. Their excuse was they were worried about my going out all the time and didn’t like my friends.
I felt incredibly violated.
I hysterically called my mom who came and got me. I gathered all my journals and put them in a box and carried them with me, getting into mom’s car and going to see La Cage aux Folles with her and her boyfriend. It is one of the funniest movies ever, but I sobbed through the whole thing, my mom wrapping an arm protectively around my shoulder as she laughed and laughed.
I grew up in a house where words were sacred. Privacy was maintained. None of us would have considered reading another’s words/letters/journals without being given specific permission. To have my father be a party to that betrayal was horrific. It was the first moment I hated the woman he eventually married. (She betrayed me and my siblings many more times after that.)
Mom kept all my old journals (I knew she would never even take a peek inside any of them) and I carried my Japanese one and the one I was writing in with me everywhere. I never left anything home for them to see or read.
Once I moved out, I felt relief in having my words back with me.
Many years later, after I married and had 3 kids, I came out as a lesbian with my (now) former partner of 28 years. My first husband was crazy mad (as one might expect) and went into our storage unit and found all my old journals and those funly-folded notes from junior high school and tossed them in the Dumpster by our house. It wasn’t until I was packing to move that I learned he had stolen my words and threw them away as trash.
That time, I was heartbroken.
And when the Love of My Life, my partner of 28 years, sent me from Germany to San Diego to live with his mom (me and the 4 kidlets), I wrote him every day. He, someone who has never written a letter he wasn’t forced to, wrote me about once a week or so. I cherished those letters, knowing how rare they were. I kept them neatly in a shoebox under my bed.
When he broke up with me a couple of months later, I took the beloved shoebox and put it on the headboard of my bed, touching it and crying often. All those words of love and honoring our commitment to each other… all just memories.
A year later, I finally got up the nerve to read the precious words he’d written to me. I’d mourned the entire year, face on the carpet listening to Melissa Etheridge sing her pain-filled songs directly to me, endless tears soaking the fibers on the floor as well as throughout my body.
I took the shoebox one night after the kids were asleep, sat on the floor and began opening the envelopes.
Inside the first one was a blank piece of paper. Confused, I opened the next one. Two pieces of paper, folded exactly how my love’s letters had been. Realization began to set in as I began opening more and more of the envelopes, finding blank pages inside. Every single letter, gone… replaced with blank sheets of papers.
I called the person I still loved so very much and asked who would do such a thing?! He said he would call me right back.
It was his mother.
She told him she did it because she thought I might publish the letters one day and they would ruin his life if people knew he was gay (he was presenting as a woman then).
As badly as my heart was broken when he left the kids and I, I was 1000 times more hurt with his words being burned in the fireplace. He knew how important words were to me, having held me as I recounted the stories of others reading and then stealing and dumping my words. Regarding his mother, he apologized dozens of times, but there was no fixing it. (Tears are falling even as I write this.)
When we got back together a few years after that, the first thing I insisted on was his mother apologizing to me. She did. It did not remove one iota of the pain that still lived inside of me.
When I have told this story, people point out: but you blog! I have considered this truth and even worked on it in therapy.
I am thinking that I blog because I get to choose what comes out to the world. I get to share my thoughts. I have control over the experience of who reads my journals.
I do not censor much, my thoughts fall out of my fingers without much planning. So it isn’t like I am not sharing deep, intimate details with you all; I am. But, I feel empowered that it is me who hits the Publish button and not someone who has no right to my thoughts, feelings or words.
(This was written the first morning of NaNoWriMo. I was dreaming about writing so thought I might as well get up and write! 4:00am)
I have an off again, on again Biliary Obstruction. Biliary Obstructions are rarely like this, from what my Liver doctor says.
Apparently, because I went about 10-12 years before getting my gallbladder out, I seem to have a gallstone stuck in my bile duct. What is weird, though, is it moves around, sometimes blocking the duct and sometimes not.
Every time I pee, I look in the toilet to see what color my urine is. If it is clear, I can breathe a sigh of relief. If it is darker, like it is today, I get worried the gallstone is moving to block the bile duct again.
Why this matters is because when the stone is wedged in, I get really sick. I feel horrid, can hardly sit, but instead, lay curled on the bed in horrid pain, alternating between constant nausea and periodic vomiting. I also have a fever and that makes me feel terrible on top of it all. Twice, I have had incredible itching, so bad I was using scissors on my back to scratch, finally going to the ER when I saw blood on my sheets from cutting myself (accidentally) with the scissors.
Then, after that specific episode, the obstruction crazily vanished over a 12-hour period and I felt perfectly normal again. It was bizarre! Everything I read on Biliary Obstruction said SURGERY, but here I was, feeling fantastic and peeing clear again.
A few weeks ago, the obstruction began… my pee turned rust colored first, then my poop turned the color of white clay, then the nausea and stomach ache set in, then the vomiting and fever. I called the Liver doc and got an appointment 2 weeks hence.
Then, after 3 weeks of this, the obstruction left again and by the time I saw the doctor, I was feeling normal. I was able to ask two main questions:
Why was this happening? And When do I go to the hospital?
He explained the stone moving back and forth.
Retained stone in a bile duct.In some cases, a gallstone will remain in your common bile duct after gallbladder surgery. This can block the flow of bile into your small intestine and result in pain, fever, nausea, vomiting, bloating, and jaundice soon after surgery. You may need an additional procedure to remove gallstones that are retained in your common bile duct.
No, there was nothing I could do to change its movement… no positioning, no food choices, no drinking extra water. It was completely random. Sheesh!
He said to go to the hospital when I had nausea and vomiting and a fever.
I looked at him and asked, “That’s it? I don’t wait until I am itching to death?” He turned and looked at me and said by the time I am itching I am near liver failure. “Do NOT wait until you are itching.”
Well, alright… I had a plan!
Part of why I got the new bed was for when I am sick with the Biliary Obstruction. After I had the gallbladder removed in February 2017, I remained feeling horrible, even worse than before it was removed, and it wasn’t until the discovery of the obstruction that I learned why.
So why don’t they just remove the gallstone? Because I have to be symptomatic before insurance will pay for it to be taken out.
I have to wait at least one more time to feel yucky before they will do something about it.