This time of the year is probably the hardest for me.
I’ve written before about the significance of April 25th. It is the most difficult trauma anniversary for me.
It’s been ten years now, and yet the pain still remains as if it happened yesterday.
It’s a different kind of hurt. A worse kind of hurt.
Of all the things my mother did to me, all the pain she caused, none of it hurt more than what she did (and didn’t do) that day.
I almost died. To this day, I still don’t know why I didn’t. But she knew what happened. She knew I overdosed. And she did nothing. She didn’t take me to the hospital. She didn’t call 911. All she could say was how could you do this to me? And then she went back to her normal daily life, as I sat alone, suffering in the worst way, physically and mentally.
I’ve racked my brain trying to understand what happened that day. I’ve tried for years to understand how anyone, especially a mother, could leave her child to suffer. There is no understanding it. She didn’t care if I died, because that meant the truth would die with me.
It still hurts. It still makes me cry. I still feel the pain in my heart, the hopelessness. A part of me still wishes that I died that day. It would have saved me from seven more years of abuse. It would have saved me from living the same pain over and over again.
I am still grieving. I think I will always grieve that day.
I hadn’t handled it well in the past. But I was going to do better this year.
I told my therapist in the beginning of this month that the end of April was going to be a difficult time for me. I didn’t go into the details right then, but I let him know I was going to need a lot of support. I told him then because I knew as the date got closer, I would isolate and shut down.
Then last week, the night before my therapy appointment, my therapist text me to let me know he would not be returning to the practice. I knew he was planning on taking a within the next couple of months, but this wasn’t a temporary leave. This was a permanent one. Without notice.
I couldn’t believe it. I had already made a mental list of everything I needed to talk about that next day, and here I was, left with no therapist, heading into the most difficult few months of the year. It couldn’t have come at a worse time.
I scrambled to find someone, but there was no one I worked with previously that was available. It was difficult to find ANYONE who was available. It was hard enough finding this last therapist. Many places around here have waiting lists, and because I don’t have any money to pay out-of-pocket, I have no choice but to work with therapists who take insurance. And those are the ones with waiting lists miles long.
I thought about the next couple of months. Even once I manage getting through April 25th, I still have Mother’s Day. Mother’s Day has always been difficult for me, for obvious reasons. Last year was probably one of the worst in terms of how I coped with it (because I didn’t cope with it). This year will be even more difficult, because I won’t just be grieving for what my mother did to me, but also grieving for the loss of my own motherhood. Things are more complicated this time around. The loss is more complex.
As much as I would like to say that I can handle things on my own, that I can cope with my losses without being drowned by them, I know that’s not the truth. I can’t do it on my own. I need help. I need support.
Even though my life is shit right now, I have 47 cents in my bank account, I’m failing school this semester, and my health has been horrible, there is a part of me that doesn’t yet want to throw in the towel. That’s why I made the decision to reach back out for help.
I called the PHP I was in a few months ago. I felt ashamed. I had spent so much time in the program that I shouldn’t still be this fucked up. I shouldn’t need this much help. Clearly something is wrong with me. But then I remembered the psychiatrist tell me it’s okay to come back if I need it. And I think I do. I don’t have many other options at this point.
My intake is tomorrow, and I don’t know how to feel.
I haven’t had much energy to write as many posts as I want to. I want to be able to get out all the shit that’s been in my head. There’s a lot going on, and a lot that will be going on in the next few weeks, as I reach 1,000 days of freedom in April.
A few weeks ago, I was offered an opportunity to writer for the APTSDA, the American PTSD Association. While I still write about DID for HealthyPlace, writing about PTSD is different, and I figure it is an opportunity to reach a different group of people.
My first piece published yesterday. It can be found on aptsda.org, or directly through this link: The Flashbacks You Can’t See.
It’s not much. I write so much that sometimes I’m not really sure what to write about, and I get tied up in the thought that maybe my experiences aren’t the “right” ones. Yet the more I write, the more I read from others that they have experienced the same.
I will update with more soon. Hopefully.
Part of my hesitance in going to the doctor is because I don’t want any more diagnoses. I feel like I have enough. Hell, even disability forms have spaces for 10 diagnoses, and I had already exceeded that. I don’t want any more diagnoses. I don’t need any more problems.
As much improvement as I’ve made in seeking out medical help, as soon as the possibility of something more comes up, I push it so far back into purposeful forgetfulness in the hope that it will never come up again. I did it last month when I attended a COPD support group. The respiratory specialist pulled me aside after group, asked me a few questions about my history, and recommended I come back to be tested for Cystic Fibrosis. She seemed concerned. I told her I would come back; I never did.
It’s a lot easier to forget shit when it doesn’t affect you every day. I’ve had breathing issues most of my life. I’m used to it.
What I’m not used to is passing out onto the floor. That I can’t forget. The concussions. The bruises. The people who have to surround me when I get up because they all know I’m going to end up on the ground unless they catch me. The very thing that led to me losing my job.
I thought I had answers, at least in part. Clearly something was off with my heart rhythm. They said it was an arrhythmia. They just couldn’t tell me which one. That’s why I had the cardiac implant. It was going to tell me what was wrong with my heart.
So when I went to my cardiologist appointment on Tuesday, I was fully expecting a simple answer. Just tell me what arrhythmia it is. Just tell me how we can fix it. I need to work again. I need to be normal.
But that’s not how the appointment turned out. The doctor scanned through the information from my monitor. I had the PACs and PVCs as suspected. He could have prescribed a beta blocker to help regulate my rhythm, but because of my age, he thought the risks were greater than the benefits. But even with that, the irregularities weren’t enough to cause my consistent passing out.
The cardiologist sat there and started to tell me there was nothing left that he could do, that he ran all of the tests he could and none of them could fully explain my symptoms. He brought up seeing a neurologist to rule out seizures, but I knew these weren’t seizures. I knew that something was wrong. But I felt defeated. All I could say was okay.
But my friend is not like me. She was not about to back down and say okay and leave my doctor’s office without any real answers. And I think the doctor realized that. So he brought up more things, some fancy words, but still nothing concrete. He mentioned something about blood pressure, and I told him well that’s complicated in itself. He asked me to explain. I reminded him that’s what led me back to him in the first place, when the PHP program found an irregularity in my blood pressure — high in one arm, low in the other. Drastically low at times.
Something must have clicked in my doctor’s mind, because he told us to follow him to his office. He pulled up my records on his computer. And the more my friend described what was happening to me, the more firm he felt in his belief about the diagnosis.
I have POTS: Postural Orthostatic Tachycardia Syndrome. It explains why my heart rate can go from the 30s to the 130s in a matter of minutes just from moving. It explains why I pass out when I stand up, or after I’ve been sitting down for a long time. It explains why my head gets so foggy sometimes out of nowhere. It explains why my blood pressure changes so drastically. POTS explains that all.
I got an answer. A diagnosis. But it’s not an easy one. In reality, I would rather my issue just have been an arrhythmia. They are easy to fix. Simple. POTS isn’t so simple. POTS isn’t so easy to fix. And when you really start to look into it, it’s only a piece of a much larger puzzle. Because POTS is never just POTS. POTS is a part of a larger problem.
POTS is one form of Dysautonomia. A big word, but basically it’s the dysfunction of the autonomic nervous system, which controls all of the automatic processes in the body: heart rate, blood pressure, breathing, digestion, and temperature control. It’s also the system responsible for the fight-or-flight response. The system that’s been overworked since I’ve been born.
So much makes sense now, and not just the passing out. People with Dysautonomia can have problems with malnutrition. They can have trouble regulating their temperature. It explains why I always end up vitamin and protein deficient even when I’m eating right. It explains why I can’t feel temperatures like everyone else can, why I don’t realize when it’s too hot or too cold. It explains why I can’t always feel pain when something is hurt, and when I don’t realize I am sick when I’m really sick. The system that’s responsible for the basic necessities of life is broken.
There’s no direct link between Dysautonomia and trauma, but I can’t help but think that there’s a connection. The very system that plays a role in the body’s response to trauma is the same system affected by these conditions.
Maybe the autonomic nervous system is like a car. A car only lasts for a certain amount of mileage before it starts to break down; that’s how it’s designed. If you drive it a lot, it’s going to break down faster.
What if that’s how the ANS was designed? Maybe it’s supposed to last a good 80 years of regular use. But when it’s overused, when trauma happens and it’s constantly activated for years and years, it breaks down faster. Because the human body wasn’t designed to endure consistent trauma. It’s why trauma survivors rarely suffer from just the psychological effects of what happened to them. There’s physical damage, too.
It frustrates me in more ways than one. Another diagnosis, and one that I can’t ignore. And even though there are things I have to do now — take medication, increase my salt and fluids, wear compression socks to push the blood back to my heart — it’s not a cure. I’m still going to pass out. I’m still going to be affected. It’s another disabling condition.
I sat in my cardiologist’s office in wavering denial. My friend asked him about my ability to work, how no one wants to employ someone who’s going to pass out like I do. She asked him straight out if I could work, and he wouldn’t give a straight answer. He circled around to talking about keeping myself safe. He wouldn’t tell me what I really wanted to hear.
It’s another diagnosis I didn’t need.
I had to have a stress echocardiogram yesterday. I’ve been having chest pains, and my primary doctor wanted me to see a cardiologist to rule out anything heart-related (my lung issues put me at a higher risk for certain heart conditions). My PCP is aware of my PTSD and my issues with medical stuff and warned me that it wasn’t going to be easy for me to do. She even said that I may have to be sedated to get through it. I thought she was joking. Now I don’t think she was joking at all.
When I went to my cardiology appointment a few weeks ago, I wasn’t expecting anything major to happen. I thought the cardiologist was going to tell me I was okay and send me on my way. I think he may have thought that, too, when he looked at my record. A 30 year-old with no high blood pressure, no diabetes, and no high cholesterol. No risks. But then he started asking me questions, and by the end of the medical interrogation, he told me I had a lot working against me. Smoking, drug use, medications, family history, and past overdoses were all fucking me over in that moment. There was enough concern to schedule more testing.
I didn’t really know what was going to happen aside from getting hooked up to wires and running on a treadmill. It didn’t seem like much, so I tried not to stress about it. I didn’t even bring it up in therapy the day before because I wasn’t expecting anything bad to happen. I thought I had it all under control.
I didn’t even make it to the first part of the test before breaking down and crying.
A nurse took me to the room and gave me a gown to change into. I knew I had to do it, but it was difficult. My layers of clothes help me feel safe, and now I had to let them go. I stood there, completely naked from the waist up, trying to wrap myself in the gown and holding it closed. But the nurse had to get in. She had to put patches on my skin so I had to uncover.
I stood there, completely vulnerable, trying to hold myself together. I felt the skin of her hands touching the skin on my chest. I wanted to tell her to stop but I couldn’t. I couldn’t move. I couldn’t speak. I froze. Then she reached her arms around me. I felt her against my body just like I had felt my mother just years ago. And I lost it.
I felt so sick. I couldn’t say a word. I just cried. All I could think about was my mother. All those times I would stand there and let her touch me and I never said a word. I never told her to stop. I never made her stop. I must have wanted it.
How sick am I to have let this happen. Does she think I wanted this? I wonder if she know. Does she see how disgusting I am? Does she know what I’ve done?
I don’t even really know all that went on during the test. I was so lost in my mind that my body became automatic. I know I stopped crying after a while. I finished the test. My heart was okay. My cardiologist was happy. I remember him asking me if I was excited to have a perfectly healthy heart, and I couldn’t answer. All I wanted to do was run to the nearest bathroom to throw up. And I did.
I needed to wash the filth off. All I wanted to do was scald my skin in the hottest water. But I was afraid to go home, because I knew I wouldn’t be safe being alone with my memories. So I took the bus to clear my mind. I fiddled around on my phone. I went to the movie theater to distract myself, only to end up crying in the bathroom stall for half an hour instead.
I wandered and cried for hours until I finally ended up at home before dark. I got in the shower and cried even more. I washed myself a dozen times but it wasn’t enough. I wanted to rip off all of my skin and scrub away all of the filth hidden underneath. I felt it everywhere. I just wanted it to go away. But it wasn’t going away.
I couldn’t eat. I couldn’t sleep. I needed clean. I couldn’t clean my body anymore, so I started cleaning my surroundings. I washed everything down with vinegar. I scrubbed the baseboard. I spent hours wiping every surface. I got a garbage bag and threw away everything that was dirty. Dirty clothes. Dirty shoes. Dirty knick-knacks. I needed everything to be clean. I rid myself of everything dirty because I couldn’t get rid of the dirtiest thing of all: me.
I can’t sleep because I can’t stop thinking. I can’t eat because my stomach feels so sick. I’ve taken four showers today and I still feel so disgusting.
I don’t think any amount of showers in the world would make me feel clean right now. I just want to feel clean.
When the doorbell rings, normal people stop what they’re doing, see who’s there, and answer the door.
When the doorbell rings, I stop what I’m doing. My heart races, so much that I can hear it beating in my ears. I can’t breathe. I don’t want to breathe, because I’m afraid if I do, they will know I am here. Five different scenarios run through my head, and none of them are good (or even rational). I always end up hiding in the closet or the bathroom, waiting for the worst to happen.
One incident is enough to drain me for the rest of the day. By the time I’ve calmed down (minutes, sometimes hours later), I have no energy left to do anything but sleep.
But yesterday, the doorbell rang (and was followed by several knocks on the door) not once, not twice, but six times.
I was a wreck. The first two times it happened, I was downstairs and locked myself in the bathroom. I was able to calm myself down after ten or so minutes. Then when it happened a third time, the panic was overwhelming. It was too much. I didn’t feel safe. I locked every lock and closed every window, then went upstairs to my room and locked my door.
Then it happened a fourth time. My mind went into overdrive. My mother found me. She knows I’m here. It’s the only thing that made sense. Who else would be ringing the bell and knocking so consistently? Not the mailman. Not a solicitor. It was someone who wanted me to open that door. It’s her.
By the time the bell rang a sixth time, I had barricaded my door with so much crap that no one would be able to push their way in. But I still didn’t feel safe. I knew where I was. I knew I was in my bedroom. I knew the doors were locked and I was blocked in. But I still felt in danger. I was scared of my mother. My mother, who doesn’t even know where I live.
I was still on edge even after the ringing and knocking stopped. Every single noise made me jump. Every car passing outside. Every creak of the floor. Every step the cat took downstairs. Every sound was magnified and I couldn’t make it stop.
My body was tired, but I couldn’t sleep. I spent hours fighting battles inside, trying to stay in the safe reality while my mind was tied to the dangerous past. After several hours, I gave up. I took just enough medicine to knock me out, because I knew that was the only way I was going to make it through.
Now as I’m sitting here, a day later, I’m wondering when it will stop. When will I not have to hide? When will I feel safe? When will I not be afraid of my mother? When will I not live in constant fear?
Is any of that even possible?
People don’t understand the fear I carry with me every day. You’re free now. Yea, I’m physically free. Mentally, I am still in prison. I am still a scared child. I am still in danger. Your mother won’t hurt you anymore, you got away. Exactly. I got away. I was never supposed to be able to leave her. I committed the ultimate sin, and now I am perpetually waiting for my punishment.
I’m tired. I’m tired of hiding every time there’s a knock at the door, because I’m afraid she will come in and get me. I’m tired of wearing four shirts and three pairs of underwear every day because I’m afraid she will come and hurt me. I’m tired of sleeping with a knife under my pillow every night because I’m afraid she will come and kill me.
I’m tired of living my life in fear, because it’s not the life I want to live.
I am constantly on high-alert. I am (painfully) aware of things that other people don’t notice, or don’t think twice about: sounds, people, cars, everything. I know that is related to my PTSD.
In some ways, it benefits me. I had someone following me in the dark a couple of weeks ago and I noticed right away and took action.
In other ways, I can do without the hypervigilance. It’s tiring. I am constantly questioning every little noise and every movement. It makes it impossible to focus.
You would think that, with being so aware of my environment at all times, I would be aware of what is going on within me. If I know the outside, I should know the inside, too. It seems like common sense. It seems like it should be that way. But it’s not for me.
Yesterday, I was putting labels up at work. I started noticing splotches of reddish-orange. I thought it was just marker or something, so I tried to rub it off, but that just seemed to spread it more. Then I noticed my hand, which had the same color splotches on it. Then I noticed my finger, entirely covered in it. It took me a minute to realize that it wasn’t marker on the labels. It was me.
I was bleeding. Profusely. I didn’t even notice I had cut my finger. How, I don’t know. I didn’t feel a thing. No pain. Nothing.
I could understand if this was a one time thing. I could rationalize it by saying that I was just too tired. But this wasn’t the first time something like this has happened. Years ago, I leaned over a burner while it was on and burned my abdomen. I didn’t feel anything. The only thing I noticed was the smell of my burning shirt. I’ve injured myself countless times and not felt any pain.
Why can I notice everything going on outside me, but I can’t notice anything going on inside me? I notice the blood on the paper, but not the cut on my finger. I notice the smell of burning fabric, but not the burns on my skin. It doesn’t make sense.
It scares me. How can I know when something is wrong if I can’t feel anything?
It frustrates me. People ask me how something feels and I just don’t know. Isn’t it hot in here? Well, I guess it is hot since you asked. But I have no idea. What does this pillow feel like? I don’t know, but since I can see that it’s silky, I’ll take a guess and say that it’s soft. I use context clues so I can seem normal. The truth is I really have no fucking clue how anything feels to my body half the time.
It worries me. You could cut the head off of my body and I feel like I’d still function the same. I don’t feel connected at all. There is no mind-body connection here.
I feel like a robot. Robots can’t feel, and neither can I.
I’m always wrong.
KJ, that’s not true.
Yes it, I’m always wrong. I can’t do anything right.
Who told you that, KJ?
My mother. She says that all the time.
She was wrong. And she’s not here now.
You don’t understand.
I know that I am away from her, but I think she’s still here.
Like she’s inside your head?
No. Like she is here, near me. Right outside. I know she’s not here, but I feel like she is. I know I’m not there, but I feel like I am. She’s still going to hurt me.
By then I was crying. I felt like I was speaking things that didn’t make any sense. It doesn’t make sense for what I know to be so vastly different from what I feel. If I know my mother isn’t here, why can’t I just go on and not be afraid anymore? Why am I still living as if she is right outside my door?
I was crying because I was tired. It’s exhausting being on high alert all of the time. It’s even more exhausting when you know the danger isn’t real anymore, but as much as you try to fight it, you can’t switch off your fear.
People don’t understand what it’s like. I say I’m scared of my mother, they say well she’s not here.
If only it were that simple. It doesn’t matter that, logically, I know my mother doesn’t know where I live. It doesn’t matter that, realistically, her physical presence is lacking. My mind has not caught up to my physical reality. My mind still thinks my mother is here. My mind still believes I am in constant danger because I spent 29 years of my life in constant danger.
I tried to downplay it to my therapist. I told her I was okay. I didn’t want to tell her just how strong my panic was. I didn’t want to tell her I was afraid of opening the door and seeing my mother there. I thought to myself, I just need to get home, and I’ll be okay.
Then I left my therapist’s office, and went downstairs to leave the building only to find that I had been locked inside (it was a holiday — someone in another office must have stopped in and locked the main door on their way out, not noticing their were other cars in the lot). My therapist had already started session with another client and I didn’t want to interrupt. I had nothing else planned for the day. I thought to myself this is okay, I can just wait on the bench outside of her office until she’s done.
I was okay for ten or 15 minutes. Then the panic started to set in. I am trapped in this office building. I can’t get out. I tried to steady my breathing, I tried to stay calm. But the fear and panic continued to increase. I started to cry. I curled in a ball on the end of the bench and that’s when it all went south. I went from I am trapped in this office building to I am trapped inside my room. Mother locked me inside and I can’t get out.
By the time my therapist finished with her other client, I was a crying, dissociated mess. I could barely breathe. My therapist sat down on the bench with me and tried to help me breathe. She knew where my mind was. Do you know where you are KJ? Look around. I am here with you. You are safe.
I sat for a while, trying to convince myself that I was not at home. I apologized to my therapist (like I always do).
“Why didn’t you ask me for help, KJ?”
“I didn’t want to bother you. I didn’t want to get in trouble.”
“You won’t bother me. And you’re not in trouble. You can just knock on my door and let me know.”
Except it’s not okay. Because I can’t even knock on doors. Bad things happen when you knock on doors. Mommy never wants to be interrupted.
Bad things happen when you knock on doors because my mind still doesn’t realize my mother’s not behind those doors anymore.
I’ve been struggling in therapy the last few weeks. Topics come up that I don’t want to talk about, things that I know will make me dissociate. I don’t want to go there, so I shut down. Then my therapist gets frustrated, and brings up intensive outpatient, because that is what is in the contract I agreed to in July in order to avoid hospitalization. Then I get frustrated because it seems like she just wants to send me off to IOP. It makes me feel like she just wants to give up on me. It makes me feel like I’m not good at therapy.
It happened again during Thursday’s session. Her mentioning IOP just made me shut down more. I was hurt. I was angry. But I couldn’t voice any of that.
I ended up writing my therapist an e-mail early Sunday morning.
Sometimes I get frustrated whenever you bring up IOP. I know that’s what we agreed on, but I didn’t know that any time anything goes wrong, IOP was going to be brought up. It just further solidifies my belief that I’m not good at therapy. And I know you said not to judge myself, but that is how it translates for me. That I’m not doing this right. That this is just another of many failed attempts at therapy. And then the others think the same, and then it becomes a battle just to go to therapy. It doesn’t help me. It just makes me shut down more.
I know I can be frustrating. I know you have to repeat things a bunch of times because they don’t get through to me. There are times I really don’t understand what’s going on. There are times I don’t feel like my brain is working. There are times when I am sitting there, but I am not there. I’m sorry for that. I am trying, but I’m not perfect.
Sometimes I don’t want to talk about certain things because someone is telling me not to, or because I know I won’t be able to stay present, or because I am afraid to feel. It’s not that I don’t want to. It’s that I can’t.
I’ve made progress. Maybe you don’t think it’s enough, and maybe it’s not enough on paper, but I think it is. Because I live it. I could be so much worse than I am right now. I struggle, but we figure out how to work through it. I don’t know what else I’m supposed to do.
I’m sorry if this didn’t make sense. I just had a lot on my mind that I’d never be able to say out loud.
For the first 29 years of my life, I never envisioned any kind of future. I spent every day wanting to die, because I believed that death was the only chance to escape the hell I was living in.
Then I managed to get away, and I didn’t have to die.
I finally started to envision a future. I was going to be someone. I was going to make a difference. I was finally going to have the life I wasn’t able to have for 29 years.
And then reality hit, and that future started to dwindle away.
The reality that my mental illness will never be accepted. The reality that no matter what good things I do, no matter what I accomplish, my DID and PTSD will put everything into question.
The reality that, even though I’ve escaped physically, my mind has not escaped the terror. I still live in fear every day. I still carry 29 years of hell inside my mind.
The reality that my physical illness will shorten my life considerably. I’ll never have a family. I’ll never enjoy retirement. I’m going to die a lot sooner than I deserve to.
And that makes me angry. It makes me angry that I spent what will be the majority of my life in a prison.
It makes me angry that my mother may very well outlive me. Actually, I think that angers me more than the diagnosis itself. I can accept that I am sick, but I can’t accept the idea that my mother, of all people, could outlive me.
My therapist and I have talked about it a few times. She doesn’t sugarcoat anything for me, which I appreciate (most times). But I’m not so sure she understands the degree of anger and disgust I have over this.
My therapist tells me that yes, it’s possible that my mother will live longer than me, but it won’t be a good life, that my mother doesn’t experience joy and happiness, that her life is and will be empty. Even in a shorter life, I can still experience those things, things that my mother can’t.
But damnit, she still gets to live. I’m not even sure she deserves to be living now, and she sure as hell doesn’t deserve to live longer than me. How did this happen? For all the wrongs she has done, she is rewarded with a life longer than the one I will see. What did I do wrong?
It doesn’t matter that she can’t feel those good things. She can still experience life. She can still wake up every day and not stress about anything. And I get to spend the rest of my life struggling. I get to spend the rest of my life in fear of her, because I will never be not afraid until she is dead. I just want to know what it’s like to not live in fear. What if I never get that chance? What if I die before I know happiness? Then I really will be just like my mother.
My therapist envisions a future for me that I don’t see. To her, these existential circumstances don’t matter. She still believes I can do great things. She believes I can have a better life, and that I can heal.
But all I see is loss. I lost everything before, and now I’ve lost my future.