Adventures in Akathisia 2014

 FRIENDS,

I’m sorry to leave you hanging for so long on the Akathisia Series. It has been a busy autumn so far, and my brain is very electrically-challenged & needs lots of encouragement to FOCUS on things these days. Damage.

As you probably saw, we took a trip to our old home Bloomington, IN last week. It was a fun getaway, but it wasn’t without turbulence. I had a surprisingly visceral reaction to being back in a place I hadn’t been in 20 years. If you are old enough to subtract 20 years from your life & still land squarely in adulthood, you may understand how jarring revisiting your 20-yrs past self can be. There’s barely an ounce of cellular material left of that person, you have moved & changed in so many ways, and yet…there you still are, right in the next static realm. Memory.

20-yrs-ago me could work all day, eat and drink anything with little consequence, including more alcohol than anyone else in my social circle, go out to concerts, events, parties, drink more, go to work in the morning, write fiction and submit it to journals, spend time with people without feeling exhausted, write, write, write, work, work, work, drink, drink, drink, play, play, play…I still played music back then too. Jesus.

2022-me was handed a dose of humility, as I stumbled around campus w/ my sore back, my clumsy feet, my sober personality, my fried brain. We had to return to the hotel for lots of down time throughout the day. I couldn’t possibly eat as much as I wanted. I could not sleep. Anxiety, mania & rage mingled in the long dark hours w/ none of the coping mechanisms of home available. My mood needed constant monitoring. As it does at home. Quadri-polar.

But it was all good. That is just life now. And it’s only gonna get, uh, more change-y.

Akathisia Art July 2014

 

************* ADVENTURES IN AKATHISIA 2014***************

SO! I promised you all the story of my 2014 adventures in akathisia. I’m still not ready to tell you HOW I got akathisia, so you’re just going to have to suspend your curiosity until it’s time to reveal that portion of the series. Just accept that it was indeed a very severe & prolonged case of akathisia, and I still don’t know how I survived…

It all started on May 23, 2014. A Friday — the Friday before Memorial Day. Tony was going to come home early from work & we were going to lunch to celebrate the long weekend. But of course Tony was running late. 

In my memory, the news of Elliot Rodger’s killing spree in Santa Barbara, CA was on the TV and that’s what set me off…that’s what upset my mind so violently that my body started to vibrate like I’d drunk 10 cups of coffee…

…except that records state the killings in Santa Barbara took place on the EVENING of May 23. So…whether that was the exact thing that upset me so much, or whether it was something else, I definitely associate the onset of my 2014 akathisia w/ the Elliot Rodger story…

…all Memorial Day weekend I felt…strange…weird…bad…unpleasant…disturbing…But nothing worse than that. I downplayed it in my mind, and may have mentioned to Tony that I felt “funny”, but I kept thinking “Any moment this weird feeling will pass.” 

And it finally did…by Tuesday I was feeling back to normal. I got on with my life, but still wondered what was that weird feeling? I’d never felt anything like it before! I was so glad it had passed.

"denial sublimation suicide" 2014

In June 2014 I had more good days than bad, but I still noticed on some days that I felt “funny.” No other words to describe it yet. Like nothing I’d ever felt. And really unpleasant. 

At the end of June, I was hit with a very strong wave of this strange feeling and it really undermined everything. I knew something was wrong. Something out of my control was happening and it scared me. I lost a lot of confidence. There was a huge depression that accompanied the shakiness.

I wondered if it was the peri-menopause!

I wondered if I was having a nervous breakdown.

In July 2014, I had more bad days than good, but I was still keeping my head above water. I was determined to get to the bottom of this…get my old life back! I had shit to do! I started emailing Tony at work that I was having a rough day. I emailed my friend Brooke and told her I was in menopause and feeling really awful. I needed to stay in touch with people & let them know I was feeling “weird.”

I was scared. As July went on, things were not getting better at all. On July 26, 2014 I called a gender counselor, thinking that I was having some flare-up of gender dysphoria. This had happened to me before. I’d be cruising along in life & then suddenly feel as bad about being female as I had when I was a little kid. I knew this was not exactly what this “new feeling” was…but I knew I needed help. I secured a spot in the Transgender Support group that would meet again on Aug 9.

August 2014

On July 30, 2014 I was so depressed I felt like crying so badly but my body could not release any tears. Instead I rolled around on the couch, my back burning & aching like never before. I laid there all day, unable to cry, unable to think, unable to get comfortable in any position. 

I was tired of this new strange feeling, and I wanted to be able to turn it off with my awesome positive thinking skills. But there was no positive thought strong enough to turn that dial to off.

My days in July were spent pacing, hurting, feeling like tears were coming but they never did. I could barely write or draw, though I did. I was still shielding Tony from how bad I really felt. 

On the a.m. of Aug 5, I was sitting there drawing. Dots! I was doing dots, and I was overcome by the most horrific feelings of depression, pure sorrow, and agitated coffee nerves that I got up and wandered aimlessly around the house. When I got to the “green room” I finally fell to the floor & let out all the tears that had been building up for weeks. Screaming, crying, weeping, baby-tears! Loud, uncontrollable sobbing that I was afraid the neighbors would hear & call the police.

And those loud-ass tears continued all day long!

All the creepy-crawlies — rat, snake, worm, bee

And they happened again the next day, and the next day, and the next day…just as forceful, just as loud, for hours & hours! As soon as Tony would leave for work, the Great Sorrow would come & it would ravage me for 8 hours & usually by the time Tony came home, that wave of post-cry exhaustion would wash over me. And what a relief! The DAYS of the summer of ’14 were torture; the EVENINGS were fine. Just fine.

And thank God for that.

By August, I was more convinced that this was a test from God.

A real spiritual firewalk.

Or a delayed response to having solved my mystery in 2012? [from 2010 to 2012 I spent time writing about my life & realizing some important things I’d been in denial about; I found some hidden landmines, some buried violence & abuse…I had figured it out intellectually, but had I processed it emotionally?]

I could rack my brains all day long, but I could not figure out what was happening to me.

On Aug 9, I attended the Transgender Support Group for the first time. It was a great distraction from my state of inner torment, but I was still not sure if this was the path to a cure. I was pretty sure this feeling was not “gender dysphoria” — that was something I knew all too well.

Akathisia Art Summer 2014

I honestly don’t know how I survived Aug 2014. I think back to those 31 horrendous days and just shudder at having lived through them. A sickening feeling. A too-close memory. If you wonder why I remember all these dates so well, it’s because this little chunk of my life is so magnified in its pain. I couldn’t possibly forget. Also I have a “superior biographical memory” to begin with.

So…Aug 11, 2014. The news man tells me Robin Williams has committed suicide. Robin Williams?!! Nawww…

but, what is happening in the world? Is this somehow related to what’s happening to me? Is everyone depressed? Is everyone feeling THIS BAD, and they’re just hiding it?

I began to have an overblown concern for how my fellow man was feeling. Was everyone on the verge of suicide & I was the last one to find out? I knew Tony was not feeling bad. I knew he never felt like I was feeling. But how many people did?

I cried & cried through August. Loudly. Violently. I figured, one day I’ll be done crying & I will be back to normal. But it wasn’t just crying. There was a …PAIN… a discomfort that went right along with the tears. My chest hurt. My back hurt. It ached to cry. My body still felt jittery & nervous to the point where I wondered if I had Parkinson’s. It wasn’t just sadness. There was a physical component.

Tony knew that I was struggling with…something. I was still shielding him from HOW very awful it was. He still did not know I cried & cried all day. I was kind of embarrassed to tell him.

This akathisia art from 6-30-14 contains an image of an airplane getting hit by a missile (upside down on the dolphin's back) On 7-17-14 a Russian rocket hit a Malaysian airliner

 

On Aug 23 I saw the gender therapist alone at her office. We both agreed that what was happening to me was beyond gender dysphoria and she referred me to a psychiatrist. I called the psychiatrist right away and she gave me some date waaaay in the future that she could see me, and I just cried and said PLEASE! I’M Desperate!!

[I actually remember saying that!]

Somehow she was able to schedule me for Sep 2. 

On Aug 29, 2014 I was having the roughest day yet with my unknown condition. I could not even stand up I was crying so hard. Usually I cried & paced. On this day I was on the bathroom floor and probably could’ve decided to end my life if I hadn’t been very determined not to. I called Tony at lunchtime. I was ready for him to see what was really happening.

And though he stood there as I cried & screamed on the bathroom floor, I could not even begin to describe to him the downward journey I’d been on all summer. I knew he would never comprehend the true horror of it. But he was there, and the truth was out. He was worried. Supportive. Loving. Everything I needed him to be, and thank God for that.

Those hours between Aug 29 and Sep 2 were survived with white knuckles, lots of crying, lots of butterflies & moths swarming through my skin, lots of physical discomfort & mental anguish. Lots of bubble baths. That was all I could think of to do for “self care.”

 

June 30, 2014 Alter Egos w/ akathisia

There were no real answers for me on Sep 2. I went to the doctor. I described what had happened to me in the last 3 months. I was diagnosed with “Major Depressive Disorder” and “General Anxiety”. I did not think these were correct diagnoses, but I accepted them, and my prescriptions for Klonopin and Lexapro.

The Klonopin was very effective at relieving my symptoms. The Lexapro was dubious in all aspects.

I felt a lot better in Sep and Oct 2014, though I still cried a bunch in the day time. In Nov and Dec I felt a little worse. I cried a LOT and felt the creepy-crawlies pretty bad.

In Jan 2015 I started a new medication, Gabapentin, ditching the Lexapro & its SEXUAL SIDE EFFECTS. Early 2015 saw an improvement in overall levels of peace and physical comfort. But I still cried a lot in the day.

Spring of 2015 was going well; I still cried in the daytime, but Klonopin and Gabapentin helped. I was getting back to writing and doing stuff that had been put on hold for a year (almost).

But in June 2015 I had a huge flare-up of my symptoms. I spent much of June ’15 as I’d spent Aug of ’14. Barely holding on. And I don’t know how I did it — I wrote a lot in June 2015. I played guitar a lot. I just comforted myself with words & music.

And in July 2015 I felt better. And in August 2015 I felt even better. And in Sept 2015 I felt even BETTER. By October of 2015, I was no longer crying every day. I was writing, drawing and planning on moving into our new house.  I had an appointment with the endocrinologist to start HRT in December***. I felt like I was out of the woods!

But I was still scared. I was still mystified. What was that THING that happened to me? Was it really…depression? Nawww…even Major Depression did not seem like a big enough descriptor for that horror. Could it happen to me again? How did it happen? Why me, and not Tony? Our lives were pretty much identical — we ate drank & lived in the same environment.

I was on guard. And rightfully so.

One watercolor that survived the summer of '14

When my symptoms began again in Dec 2020, I recognized them right away. Akathisia feels like a lot of things, but nothing else feels like akathisia. If that makes sense.

And in Dec 2020 I was already in a very bad place. Life was not going as wonderfully as it had been in 2014. My will to survive was not as robust as it was in 2014.

I would say, having written this retrospective, that the 2014-15 experience with akathisia was way worse. It was longer for one thing!! No one knew what it was. I went from being super happy to being in a horror movie, so the drop was more sheer. In 2014, suicide was not an option! We’re surviving this come hell or high water!

Not so in 2021.

This is already a really long blog, but I want to mention one more thing. In the summer of 2014, in Sarasota, FL, right across town from me, a 63-yr-old man named Louis started taking an anti-depressant medication because he had just retired and was having trouble sleeping. He began having symptoms of akathisia right away, pacing, rocking back & forth, feeling more depressed than he did before taking the drugs. But no one in his immediate circle knew what was wrong. His doctors did not know how to help him. Louis committed suicide in the Spring of 2015. 

When I don’t have akathisia, I don’t cry very much. But when I heard Louis’s story on the MISSD podcast, the tears were flowing. There was someone, living in the same town at the same time, and we couldn’t reach each other. Didn’t know each other. Couldn’t talk to each other. And he didn’t make it. And I did. And how many more were there? In Sarasota alone?

Okay, we’ll end there for now. Enjoy all this wild akathisia art I found for you! At the beginning of 2014, I was all about learning how to do watercolors. I was determined to get it! But what I ended up mostly doing is throwing out my paintings, and keeping the brush pads with all their random marks & taking an ink pen & making something out of those instead. That’s how most of these arts happened. 

***yes, I stuck with the Transgender Group, and did make the decision to transition as I started feeling better in 2015