A Place To Go

For 11+ months, I’ve had what doctors have been calling a suicidal psychosis

I don’t want to end my life. But, 24 hours a day my brain shows me repetitive “videos” of me committing suicide, unless I’m distracted.

I call these constant images “the imposter” because they feel like an alien has taken over my brain, that my brain’s been hijacked.

My brain used to show me images of me ending my life from the outside. Now, more and more, the images are from the inside. So, if I’m hanging myself in a doorway, I see out my own eyes as it’s happening. It’s more real.

I’ve been in bed, bed bound, for 5+ months. I’m fatigued, just want to lay down, also to make everything seem a little less overwhelming, make it smaller. 

When I can get out of bed to do what were once simple things like brushing my teeth, or making my breakfast, it’s hard to get started. Either I’m confused about what to do first, or I can’t get my body or mind to take the first step. 

When this happens, I ask Bill to get me started.

He puts the toothpaste on my toothbrush, or starts to heat the pan.

Or, I let him know that I’m just not going to be able to do it today.

The last 2 weeks, the imposter was trying to “peak” again. It was trying to get me to act on what it was showing me. I’ve been calling this “Level 3.”

The 4 or 5 times this has happened, I have either been hospitalized (I’ve been in 2 psychiatric wards), or I’ve been able to stave/thwart by changing our scenery, being around friends and family.

One place we always go to stave/thwart is to Bill’s parents’.

This has meant so much to us, having a place to bring our overwhelm, whether we talk, or watch their TV with them, or just look at other things while they sit with us. 

Another big help is that Bill’s mom and I have started playing Scrabble on-line (whether I’m in my bed or Bill’s parents’ living room). I do this to take a break from watching Netflix or Hulu (right now I’m watching all 15 seasons of ER);

talking to friends, and watching movies or TV shows are the only other ways I can distract at home right now.

In August, the imposter’s horrific images, began to be accompanied by an intense tremor, an involuntary jerking of my body–face, neck, shoulders, hips—most often when I was fatigued. 

Since November, this has become more pronounced and frequent, especially when there’s extra stimulus, like if there’s multiple people, multiple sounds, or I’m in a new environment with multiple things in it. 

This newer type of movement tends to be an uncomfortable, side-to-side swaying and turning of my head and neck.

 

When stimulus is at its highest, my eyebrows go way up, and my eyes kind of bug out. At its worst, I freeze. 

Bill repeats my name. I can hear him, but I can’t move, or lower my eyebrows, or close my eyes. These are little seizures.

We had our first appointment with a neurologist Friday morning.

I’ve never been more nervous, like my life depended on this time with this person. And, I didn’t know if we would have time to explain everything, or if the doctor would listen.

I wrote out everything I wanted to get across—

that I’m not “suicidal” even though my brain keeps replaying these suicidal visual scenarios;

that I’ve tried 8 antipsychotic drugs with no luck;

that I can’t get out of bed;

that I can’t control my body;

and—in case he didn’t know—there’s research showing that brain inflammation can cause suicidal thoughts (thanks again Facebook friend).

And, we had cued-up/recorded some videos on my iPad (including the one above):

so the doctor could see what the movement looks like (in case I wasn’t moving during the appointment);

and videos of what I normally look like without the movement (in case I was moving during the appointment).

I was glad when we entered the office building, and all the decorations and sounds and people made my head start twisting right away. I wanted the doctor to see the movement first-hand.

And, was relieved, when we met the doctor, and he said we would have a whole hour to meet.

And, was some-word-meaning-way-more-than-relieved, when he was aware of the sometimes connection between brain inflammation and suicidal thoughts, that he was open to the possibility that the imposter might stem from a physical ailment.

Not only did I have time to give him the pertinent info from March 2017 to present, but he also had time to do all his in-office, cognitive-, resistance-, reflex-, physical-type examinations, and to tell us what he thought (we actually met for an hour and a half).

As far as the movement—termed tardive dyskinesia (TD)—it’s probably the result of all, some, or even one of the antipsychotic drugs I was prescribed. It will eventually go away. 

Or it will be permanent. 

He told me there is a drug that has been helpful to people with TD, but that there can be severe side effects. 

He asked me how I feel about the movement. I told him about how some people have been acting differently around me, how I feel exposed, and vulnerable. 

Then I said, “If I have to live with this movement the rest of my life, I could. But, if I have to live the rest of my life with the suicidal images, I might not be able to. I’ve been literally fighting to stay alive for a year, and I’m overwhelmed, getting more and more tired.”

Then I reiterated, “My hope is we can do at least do a brain scan to see if there is anything wrong which might be causing the images.”

And this is when Bill and I were some-other-word-meaning-way-more-than relieved.

He ordered blood work, an electroencephalogram (EEG), and magnetic resonance imaging (MRI) of my brain, all of this to take place this coming week.

He ruled out encephalitis and Parkinson’s disease with his in-office tests. 

With the blood work, EEG, and MRI, he is looking for inflammation or abscess, brain tumor, lyme disease, lupus, Huntington’s disease… 

Then he said, “If nothing turns up, it could be schizophrenia.” (Which I won’t get into right now, that’s a whole other post). Then, “You have some kind of chronic disease; we just have to figure out which one it is.”

Bill has always been good about “Let’s take one day at a time.” 

This is the yin to my “What-if-my-head-is-going-to-twist-the-rest-of-my-life,” and my “What-if-they-find-a-tumor,” and my “What-if-they-don’t-find-anything?”

It helped to talk to Bill’s Mom and Dad right after, and to tell a couple friends how it went.

And, it helps to write and share this here.

To make a space. 

I think I’ll be able to get into that yin place of a day at a time now.

Thank you so much for reading and for your thoughts, and vibes, and prayers. It’s been a huge help to be part of this supportive community.

This is a sketch of the interactive installation I hope to present in NYC this Spring. I was recently nominated for and awarded a Wynn Newhouse Award, an award given to artists with disabilities.

The award includes a grant and the option to participate in an exhibit at Syracuse University’s Palitz Gallery. Bill and I are planning to attend the award ceremony. And, are looking forward to meeting and talking to the other awardees.

 If you have interest in making a donation: https://www.gofundme.com/living-and-medical-expenses-for-amy (there are also several drawings available as well as new “Perpetual Yard Sale” items).

National Suicide Prevention Lifeline (24-hour): 1-800-273-8255

7 Comments

  1. Dear Amy,
    You and Bill are in my thoughts, heart, and prayers.

    May something that can be worked with and that will allow you to work and create be found in the tests.
    Peace,
    Arline

  2. Amy, I know you and Bill were in great anticipation of this appoIntment and so glad to hear that the doctor was so recaptive and collaborative with you – that is so important. I hope the upcoming tests start to reveal some useful answers soon! All our love is with you both as always!

  3. Dear Amy,
    So pleased you have found a doctor willing to listen to you and Bill and feeling hopeful he will get to the bottom of what is triggering all this torment. The unknown is often the scariest so my wishes are that a positive plan can be put in place once a determination is discovered and you will find your way. Congrats on the award…you are an amazing woman!
    Hugs, Jill

  4. Amy,
    We are all hoping for good things to happen soon. Congratulations on your award. The sketch for your interactive piece looks interesting! I’d love to know more about it. Best, Kenny Cole

  5. Dear Amy, thank you for your sharing, your honest and vulnerable truth about this scary and challenging illness you’ve been dealing with. My heart goes out to you and I hope and pray to the universe that you find healthy relief from these symptoms.

    It’s great that you found a doctor you’re connecting with and hopefully these tests will clarify what’s happening and point you in the direction of a treatment that will help. Much love and a hug!

  6. Amy! Hello from TX. I just read your story, thinking of you ! You mention imagrs of the imposter. This is a fairly common thought resulting from trauma. Seeing a neurologist is good, I also recommend seeing an art therapist, drawing the imposter, and processing the imagery. Since you are so visually oriented, you would have no problem drawing the ‘imposter within’. Best Regards, your fellow creative, Peter

  7. Hello Amy,

    Just FYI – the donation link on the bottom of this post worked fine. But the pay pay link on the donation tab led me to a page with an error on it. Maybe it was my funky computer but just thought you would want to check it out. Take care and much love!

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