Cassandra "Caz" Stark

Trigger warning: This post mentions drug use and suicide.

Doot doot doot doot! Is anyone else singing the Safety dance right now? Just me? I provide my own comic relief when needed. It’s a coping mechanism I am well aware of.

I need a safety plan. This isn’t the first time.

If you don’t know what a safety plan is, it’s an easily accessible plan you have to help keep you as grounded as possible when you’re on the verge of making a variety of bad decisions. A safety plan is used for a variety of addictive behaviors, codependent relationships, and suicide. Essentially, if you struggle with something that is bad for you, a safety plan is there to help you do it differently. It is a treasure map to pattern interrupt that helps people stay away from an abusive habit (a variety of addictions – eating disorders, drugs, alcohol, etc.) or person (enmeshment, abuse, or self-harm).

If you’re reading this and you relate, thank you for your bravery in being here. Let’s work on this together.

If you’re reading this and you’re putting up assumptions about what it means to be in this situation, challenge that BS (belief system). It is everyone’s INTRINSIC RIGHT to be SAFE! It is cultural BS (belief system) that leads us to believe that if someone is unsafe, they set it up that way and must be (a variety of BS fill-in-the-blank assumptions). Drop that storyline. NOW.

I need a safety plan because I am straddling both sides of this fence as we speak. I am struggling to free myself of medication use, and despite titrating off of these medications appropriately, it is causing a massive swing of unsafe reactions. I say this without defense and only as information to join and be joined by anyone who can relate.

Many people are already aware that I have Narcolepsy. Narcolepsy is an autoimmune disease of the brain. Regardless of how well I sleep, there are certain cells in my brain that never, ever replenish. They only diminish slowly or quickly, depending on the quality that I am able to receive.

As part of my research, I have gone very deep into the correlation between autoimmune disease and undealt with trauma. In fact, the reason I am in this boat today is that I have done the work to provide myself with enough Know-ing. I have empowered my Can to make this Choice to be fully rid of prescription medication. Why am I doing this? A reset. Health. Because the final step in facing and recovering from trauma, for me, is to add to my Know-ing that I can provide myself with what I need for bravery, understanding… closure. I want to Know that I can bravely go into the night fully aware and allow myself deep rest because I Know I am safe. This is a huge undertaking.

I have been on some kind of Narcolepsy medication every day of my life for 17 years, with the exception of between-doctor phases.

SEVENTEEN YEARS!

I don’t know a lot of people who have consistently taken a multivitamin for that long, let alone a variety of medications.

Throughout that time, most medications didn’t work. The side effects were worse. The efficacy of each new regimen faded quickly – leaving me in extremely unsafe situations. The experience was like signing up for involuntary drug withdrawals. For weeks, months, and sometimes years, I would be ok, and then without warning, for a single night, a full week, or forever more, what I was on would stop working and cause a complete psychosis – just like you’d see in the movies when someone was unable to access a drug they “needed.” This is the stuff overdoses are made of. And I’ve been there. Done that. I wasn’t jonesing for an upper or even trying to ride the wave down. All I wanted was to sleep! Desperately.

This is a story that almost no one in my life gets and, like many “hidden diseases,” receives more judgment and pushback than support. That’s fine. I’ve done the work to ensure that I show up for myself and maintain my own boundaries. It isn’t about whether or not anyone else believes, supports, or accepts it.

My partner in crime and ride-or-die gets it. All I need is for him to get it. And we’ve been on the same page of understanding for years. He sees it. He Knows that for me, eating the wrong foods or just 30 minutes too late means I lose 3-5 hours of sleep which often becomes a life-or-death situation for me. He Knows that if I lose 3-5 hours of sleep as a Narcoleptic, that’s the equivalent of your average person losing 3 entire nights of sleep. He Knows that if I’ve had a bad episode more than once in a short span of time, I am at risk of completely losing my mind, as anyone who hadn’t slept in days would do.

Many people talk to me as if I am wrong about my own diagnosis, telling me that people with Narcolepsy fall asleep easily and don’t have insomnia. That’s fine. People’s actions and reactions are proof of what they are available for and have absolutely nothing to do with me. I get that. What matters is that I Know what my boundaries are to remain SAFE.

For years, this has been my journey. Every. Single. Night. My first BeMo had the sole purpose of providing me with the safety I needed just to get into bed, attempt 3-4 hours of active sleep and get up and go to work the next morning. Sheer survival. Over the years, that survival changed for me. I let go of the BS (belief systems) that I “needed to” do anything. I didn’t need to be an Executive. I didn’t need to prove to anyone that I could be at a work dinner at 9pm and be back online at 6am. I didn’t need to tie my worth to a to-do list or a to-done list. I didn’t need to tie my worth to a paycheck stub. With each new realization, I did the work to let go and be free of it, which has led me down a path of gradual freedom from my fear of sleeping/not sleeping.

That *poof* of freedom you experience when you’ve fully healed an area of your life takes more time the deeper the storyline goes. This means you can do a lot of work over a long period of time and still find yourself in a very dangerous space, unable to reason with yourself in a split-second decisive moment. This is where all of your Know-ing from the work you’ve done becomes the absolute key to staying grounded in a difficult moment.

Ultimately, when I am spiraling at 3am because I am too exhausted to lift my head, read a book, walk around, watch TV, or do absolutely anything with my time other than lay near comatose and unable to sleep, caught in my own claustrophobic lack of being able to do anything with my time. As I hold on to my Know-ing, I try not to slip into post-traumatic BS and mask it as something I “know.” Things like: I know tomorrow is going to be the worst because of this, and it’s never going to be worth it, and I can’t live like this and….*spiral*.

Right now, things feel pretty bad. I struggle to hang on to my Know-ing without a reminder at my fingertips.

As I’ve transitioned medications before, I’ve always gone from one to another, and the worst I ever had was five rough nights back to back. I started this journey a year ago after a sleepless night got the very worst of me. I replaced one of my night meds with a variety of natural vitamins – spending the year ensuring that I ate more specifically, cleared heavy metals from my body, and increased the vitamins that healed adrenal fatigue, smoothed serotonin levels, and created an overall vibe of calmness each evening. That first step gave the illusion that this was going to be really easy! I hadn’t considered that I was replacing one thing with many others. Now, I’m down to the final line – no more to replace, just things to get rid of. As I do this, even some of my vitamins no longer work. Combinations become too much or too little. It is a constant battle to find balance.

I’ve given myself months to be able to do it, and it has been rocky, but now I’m down to the line – having titrated down to 1/4 of my normal dose, and most nights, I find myself spiraling with “I can’t” statements. On more than one occasion, in knee-jerk decisions of safety, I’ve gone full swing in the opposite direction and chosen to take the medications I successfully removed from my life a year ago in an attempt to be safe in a way that causes me to skip right over my true Need. (Remember, if you don’t operate from a center point of Need, all you’re left with is FUNCKed.) These are the moments that I have to tap into my Know-ing hard and deeply in order to not pound the entire bottle in fear. So. Much. Fear. It’s beyond hard. That is why I am creating a safety plan to keep with me. I don’t have to struggle to remember it. The list of what I can do for myself at that moment is right there with me, reminding me that I have choices.

The compounding effects of sleeping maybe 90 minutes throughout a night are challenging every area of my Know-ing. In order to survive this, I’m forced to face the deeper levels of BS (belief systems) that doing = worthiness. Even at this moment, writing a blog post is not what I am “supposed to” be doing. What I’m “supposed to” be doing was also “supposed to” be done by April 1, and it is now the 11th. But blogging is fulfilling a need for me. Putting this out there helps me Know more and provides me with a sense of safety more than checking off to-dos.

Sometimes, I have to remind myself of the sheer, basic truth that to-do lists rarely ever meet needs. Feeling incapable is a very slippery slope of self-diagnosing incapability. I’m really getting down to the nitty-gritty of “feeling” incapable versus what my capability to fulfill my “need for” actually is.

It’s hard to delineate BS from Choices and Choices from Desires. I remind myself that anything that is a “need to” or masked as a “should/have to” is a negative belief. The core of what makes it negative is the way that it is presented. Need to/have to/should are all blame-shame speak.

When need to/have to/should is used as a motivator, it is often packed with emotional, physical, or verbal abuse and therefore has an attached feeling and, therefore, a survival instinct reaction. So even in your kindest moments, don’t gaslight yourself into motivation by speaking in this way. We talk to ourselves this way because that’s how we were raised. Guess what? It didn’t work then and won’t work now. If you’re motivated by it, you’re living in a need for validation/approval and ramping up anxious, hypervigilant behaviors. If you’re demotivated by it, you’re burned out AF by the constant hyperbolic BS. More likely, you cycle through both and get increasingly harder on yourself for doing so.

Right now, I am detoxing 17 years of BS (belief systems) faster than any of the medications I’ve been on. Without medication, my nights are left with a long, thick darkness of post-traumatic realization. Because I am captured by my own cataplexy, I have little choice but to be emotionally present for the “if it’s hysterical, it’s historical” living nightmare. And my greatest hysteria comes between the hours of midnight and 2am! If you relate, it is easy to understand why in a split second, one can stand up in bed and insist, “I can’t,” for what could be the last time if they are not careful.

My BeMo Practice helps me every night, but I am so tired that I can’t get it all on the page. I’m in this drastic, helpless cycle of hitting the pillow hard and falling asleep almost instantly… for 30 minutes. Then, I’m up. I’m wired. I’m worried. I’m helpless. I’m hopeless. I’m scared AF. I Know that “I am” statements like this are packed full of BS and come as opening statements to hysterical breakdowns. I try to distract, but I don’t even have the muscle capacity to hold my Kindle at an angle, supported by a pillow, to feel as though I have some saving grace or company-keeping for what will undoubtedly become the next five hours of my shouldn’t-be-awake life. I simultaneously cannot keep my eyes open and cannot keep them from flying open. I Know why. Right now, that Know-ing isn’t helping much because Know-ing doesn’t always come at the exact same time as accepting. I’m not all the way there yet. I will be. And I Know it will go *poof* and fade away as soon as I’ve accepted it for all it is.

The only way out is through. I want to do this. I’ve dedicated myself to this mental and emotional detox. In order to do so, I am using the boring days and “energetic” hours to use the BeMo FUNCK practice to create a Safety Plan. This is just one example of why journaling and practicing on good days is doing the work for true and absolute healing.

Using FUNCK to Create a Safety Plan looks like this:

When I am Feeling: overwhelmed, spiraling, out of control, victimized, defensive, panicked, and hysterical…

Remember, You have survived this before. You have so much Know-ing about this situation and why it is happening. You are capable of getting through this. You are not alone. You have people you can call. You have someone to rely on. You are going to be ok. you have a plan!

I Need safety. Fulfilling this need looks and feels calm, understood, seen, heard, and comforted.

To fulfill the need for safety, calmness, understanding, and comfort, I Can:

• Express my need immediately and as calmly to anyone I am with.
• Try to get out of bed, even if it is just on the floor next to the bed – to mentally reset the stage.
• Try to color, read, or return to my BeMo and write more. If I cannot move because I am so exhausted, I can work out a signal beforehand to let Stark know how he can assist me in my cataplectic state. If Stark is unavailable, I can hug my knees, rest my head on my knee and concentrate on my breathing. I can try counting backward from 1,000 or do a full body scan meditation to calm the spiral.
• I can add more calming things to my Sleep Kit and night routine,s such as a new sleep mask or headband, a specific smell in the room, nighttime medication tools, and a very calm and soothing light.
• I can watch the night light move across the ceiling, concentrate on my night oils’ smell, and breathe deeply.
• I can repeat affirmations of safety and add Know-ing to my affirmations.
• I can use more energetic daytime hours to find more understanding in my spirals and fears so I face them when I am more capable and feel strength. This helps free me from overthinking any of it at night and trying to force my way through it in desperation.
• I can revisit online communities that center around these experiences in order to feel joined and be able to pay it forward.
• I can call my therapist or at least make sure that I am meeting with him weekly while I go through this.
• I can share my Safety Plan with my partner, Stark, so he is aware of my needs when I am unable to communicate them.

I Know it is important that I surround myself with people that I fully trust. I Know I have a tendency to alienate myself when things feel really hard in order to gain control and feel like I will survive this, and that can lead to quick, panicked reactions, blame, and resentment, so in order to overcome this, I can communicate clearly beforehand and add to my Safety Plan and communication as needed.

I Know I am not alone in this – Stark is here for me and fully understands me, or at least wants to, there are strong online communities for this, and my therapist will do his best to be there for me 24/7 if I need.

I Know that I will get through this if I choose and that I have made a lot of smart decisions to do this slowly, over time, and with as much safety as possible. I also Know this is the end of it and, therefore, the worst of it, and there is a way through. I Know in the end, I will do what is best for me and that this is all information that I am adding to my Know-ing.

When things feel like they can’t be worse, I like to use what I call a Simple Summary for my Positives List.  

Using a Simple Summary for Positives  

To do a Simple Summary exercise, answer these three questions:

• What are you most grateful for today?
• What was your favorite part of today?
• What do you most look forward to in the future?

In times of dire need and hopeless feelings, these three questions can feel challenging enough, but they bring the right perspective without feeling as daunting as filling a page with Positives, Gratitude, or “I Get To” lists.

To end, here’s my Simple Summary:

Today, I am most grateful for all that I have added to my Know-ing that has allowed me to even consider this final frontier of healing.

My most favorite part of today is going on long, healing walks with my family – seeing the ear-to-ear smile on my puppy’s face and holding hands with Stark while we go as far as I am willing to go, as slowly as I need. This brings a presence to my life and helps me sleep more calmly when I get there.

I most look forward to getting through this because I know I will, and I know I can.