Slowly coming Out of the FOG, with a bonus brain tumor subplot

Started by HS25362, May 18, 2019, 10:11:15 PM

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HS25362

Hello! I've been lurking for a bit, but this is my first time posting. As I reflect on what has been the (not to be hyperbolic) weirdest/worst year of my life, I think it might help me to write out everything that's happened in one (or two) place(s). Even if no one reads this whole long thing, I'm hoping it will make me feel a little more grounded. Or at least I can send it to my therapist when I find a new one.  :)

To start: a little over exactly a year ago, I was unexpectedly diagnosed with a brain tumor. That's quite the shock for anyone, let alone a 20-something relatively healthy woman halfway through a PhD program with no obvious symptoms. (The doctor who set off my whole diagnosis process was an ophthalmologist who noted I had swollen optic nerves after I complained about seeing occasional flashes of light). Two months after that appointment with the ophthalmologist I was to have brain surgery to remove the tumor. My prognosis was good, but of course being diagnosed with something so intense with no obvious signs was a real existential gut punch.

I actually blogged quite a bit, and publicly, about my diagnosis, surgery, and recovery process. A year later, I'm tumor-free and in good shape, with just a little bit of (likely temporal lobe) epilepsy from damage caused by the tumor. What I didn't talk about publicly was my coming-out-of-the-fog in relation to my uBPD mother.

Besides me, the main players in this story are my father (who is separated from my mother but still financially supports her), my uBPD mother, and my roommate. At this point, my roomie and I had lived together for a year and a half. We had started as essentially Craigslist roommates, but became very close friends. She's a nurse and helped me quite a bit in navigating all the doctors and assuaging my near-constant "what if I have cancer and I'm going to die" concerns. She helped me make the call to my parents to tell them my diagnosis (I live a few states away).

My parents' reaction, given the severity of the situation, was not out of the ordinary. They visited me while I sought a second opinion and met the man who would be my surgeon. A few weeks later, they came back down to stay with me during my surgery and recovery process.

My parents' arrival was a sign of things to come, but nothing I hadn't experienced before. First, my mother demanded that I find an AirBnb for them (I had also found, booked, and paid for a motel the previous time they visited). My mom called me in a huff around 9pm because she couldn't figure out how to get into the AirBnB and my father was being absolutely "useless." I tried to resend her the directions for accessing the apartment that I had sent her earlier in the day. She called me and demanded that I drive over there to figure it out for her. Of course, I obliged. My dad was clearly exhausted from dealing with my mother's constant jabs and critiques while they drove the 10 hours to get there.

Fast forward to my surgery. All things considered, the surgery itself was remarkably unremarkable. I was able to leave the ICU to a regular hospital room about 24 hours after the end of my 8 hour (successful!) surgery. Note that although my tumor was assumed to be benign, I had not yet had a biopsy and my doctors did not know for sure. Unfortunately, at some point during my stay in the ICU, some man wandered into my room and started talking about my chemotherapy options. I took this to mean that my pathology report came back and I had brain cancer. I probably don't need to describe to you how I reacted to that news. We then learned that this man had no knowledge of my medical records and was some sort of "health services navigator." (Happily, once my surgeon found out, he assured my family and me that that man would never set foot in that hospital again.)

I only mention this to explain that I was very much an emotional wreck for the rest of the hospital stay. I could barely walk, eat, or go to the bathroom. I refused visitors. My roommate said I would stare at the walls for hours, barely blinking or engaging with anyone. I would talk a little bit, particularly with my dad and my roommate. My mother hated this, and would lament to my roommate that she's "losing" me. Later, my roommate told me that she could tell the tension was rising and a blow-up was imminent. I knew that feeling all too well.

About three days after my surgery, while I was still recovering in the hospital, hell broke loose. My mother apparently sent my roommate a slew of angry, incoherent texts about how awful my roommate is. My roommate told me she was afraid to go home because my parents were now staying at our place. On the one hand, part of me thought, "ha, you think this is bad? This is a minor blow-up compared to what I've grown up with. This kind of angry texting was a regular Wednesday in my household." On the other, I was struck to the core with guilt and recognition when I saw how truly anxious my roommate felt in the presence of my mother. That was the fear I had experienced all my life.

My roommate told me she thinks I've been seriously emotionally abused and that I was in deep denial. This was the first time someone had ever said something like that to me. I had stopped trying to explain my mom to people years ago, after so many people asked what I must have done to her to make her treat me like this. My mother had also never shown this side of herself to anyone in my life. My roommate subsequently kicked my parents out of our apartment, while I ended up footing the bill for their second AirBnB).

At this point, I was completely at my wit's end. I still didn't know for sure if my tumor was cancerous or not. A few days after I got home from the hospital, my roommate texted me angrily one evening when I failed to mention to her that my parents were still visiting me at our apartment before they went back to their AirBnB for the night. I felt enormous guilt at my roommate being subjected to my mom's abuses. I felt enormous guilt at my father having to mediate between everyone, yet again. After my parents left for the night, I asked my roommate to please just apologize to my mother even if she didn't mean it, just to smooth things over and make things easier for me. My roommate said she refused to apologize to a bully. I then divulged to her that I was having thoughts of self-harm. I truly didn't mean it this way, and I'm still ashamed that I brought up self-harm even though the thoughts were real, but she interpreted this as my attempt to manipulate her into apologizing. She drove me to the ER to be admitted for psychiatric evaluation.

After a completely useless overnight stay at the ER, I returned home when enough medical professionals said I don't seem to be a danger to myself or others, just under extreme stress. My roommate rubbed it in my face later that I "changed my story" when I got to the ER to avoid being hospitalized.

The next morning, I admitted to my parents what had happened. Strangely enough, my mother thanked my roommate for taking me to the ER because it was the right thing to do if I didn't seem like I was in my right mind. My mother did "call" my surgeon, and told me that his medical team thinks I should come and stay with her for a few weeks. Of course I was in no position to refuse.
That evening, my mother also called one of my best friends from college who lived a couple hours away and begged her to come visit. My friend (who is a social worker) decided to drive up the very next day because she was so alarmed at how unhinged my mother sounded. She said my mother sounded just like one of her BPD clients.

We stayed at my apartment until my first follow-up appointment with my surgeon was done. My initial follow-up was extremely positive: my surgical wound was healing very nicely! I got my last staple out! Lest I think brain surgery made me immune to my mother's rages, though, on the car ride home I made the grave mistake of telling her she was driving in the wrong direction. She blew up at me, screaming and swerving the car. I completely dissociated, but I think my dad actually did step in (rare but not unheard of for him) and tell her that she had no right to treat me like this. I don't remember exactly what she said, but whatever it was I got the sense that she wanted me to feel guilty for the pain my brain surgery (and my rejection of her in favor of my roommate and father) had caused her. When I got back to my apartment, my friend had arrived, but all I could do was sob in my bed ("take a nap") for a little while.

At some point, I had asked my roommate to hold on to the Xanax the doctor in the hospital had given me. My mother was encouraging me to pop them like candy so I would feel better and be easier to be around. Taking Xanax did feel great – which was why I asked my roommate to hold on to them, because I was scared that in this state of vulnerability I could get addicted really quickly. A home nurse visited me and asked to see all of my medications. My dad had to retrieve the bottle from my roommate's room (she was at work at the time), which my roommate later told me felt "deeply violating" and yet another instance where she felt unsafe in her own home. I'm just speculating as an only child here, but I think perhaps I felt the guilt of a child who fails to protect their sibling from parental abuse. Meanwhile, my mother was taking pictures of the "disgusting" state of our apartment and documenting all of these "medical abuses" inflicted by my roommate so that she could get my roommate's nursing license revoked.

I was absolutely exhausted – trying to appease my roommate, trying to appease my mother, feeling enormous guilt that my dad had to deal with this mess. Going back to my mother's house for a couple weeks was, strangely, somewhat of a relief. Back in her care and away from my roommate, my mother treated me much better, only blowing up at me a couple of times. I spent the next few weeks still dissociated – mostly watching TV and scrolling on my phone, terrified of getting the phone call that would tell me I had cancer.

About two weeks later, I headed back to my apartment to be alone for the first time in almost a month. My roommate was angry with me for not informing her when precisely I would be back – leaving her "in the dark" and choosing to be manipulated by my mother. My roommate promptly decided she needed a two week solo vacation. I weakly protested that I still needed some assistance while I recovered, and she decided to stay a few extra days. Then, she made it clear to me, she needed some substantial time away from me.

Seven weeks after my surgery, I followed up with my neurologist who gave me my pathology report: WHO grade I! Benign! It had taken so long because my brain tumor, apparently, was extremely rare (like, a few-reported-cases-in-the-medical-literature-rare). My roommate and I cried happy tears and got overly expensive, overly sweetened lattes to celebrate.

For the next few weeks, I sat with the thought that I had been emotionally abused all my life and that I had been in deep denial about it. I read a self-help book for partners/children/parents of people with BPD, which is how I found this website. It all rang so painfully true, but still the thought lingered – what if I was making this all up? What if I was as manipulative as my roommate said I was – what if this was just my own narcissistic ploy to get sympathy? I couldn't shake my doubts. I still can't, not completely.

I returned to school in the fall, three-ish months after my surgery, and wrote a dissertation proposal, trying to return to "normal life" as quickly as possible. My doubts about whether or not I had experienced everything I experienced still tugged at me. I don't feel like I can trust myself and my own accounts – even writing this, I fear that I made it all up.

Over the next few months, my relationship with my roommate rapidly deteriorated. A lot of her behavior reminded me of my mother's. After living together for two and a half years, things reached a boiling point. She was angry at me because I had not been as emotionally supportive as she wanted me to be – but this critique came in the form of the unrelenting jabs and totalizing comments about how awful I was, even as I tried to apologize. Admittedly, I lost my temper. I screamed at her that sometimes living with her was like living with my mother. A few days later, she began packing her things and told me she was moving out, breaking our lease. When I told her that my own eviction was a possibility if she didn't pay rent and I couldn't find someone to sublease, she told me yet again how deeply manipulative I am.

With my roommate out of the picture, I felt like the fog had lifted – but I think it was actually a false consciousness sort of fog. For a while, I believed that my roommate was the one who had completely manipulated me. I had not been abused, I was not in denial, and everything was fine.
After a visit with my mother just about a week ago, a visit that involved a blow-up and another attempt to take me to the ER, I've come to the unsettling conclusion that both my roommate and my mother were both right. Each of them said that the other had brainwashed and manipulated me. The last time my mother was here she said derisively that she doesn't even know who I am anymore, and I need to stop taking Prozac because it's turned me into a completely different person. In my darkest moments, I'm not sure who I am either, or if I am anyone at all – am I just an assemblage of other people's distortions of me?

I know I need help. I'm looking forward to the summer to focus on finding that core of myself again. Right now I feel adrift and out of sync with time, space, and who I was – if anyone – a year ago. My sincerest gratitude to anyone who's read this far. I'm hoping that putting this out here will help me to find some tenderness with myself and recognition of what I've been through.

bloomie

HS25362 - I read it. Every single word. :yes:

Hi there and welcome. I am thankful you have joined the community. You are dealing with a lot of painful and complex situations and I am so sorry things have been so hard. Thankful to hear the news that your pathology report showed no cancer. What a huge relief.

I also grew up with a mother who I believe was uBPD/NPD. I know first hand the self doubts that can come even like waves as we fight for healing and to recover a stable sense of ourselves and speak the truth of our experiences.

The tabs above are a great jumping in place and the toolbox offers strategies to help you going forward. There is great validation and support here from a community of fellow survivors who truly do get it.

It might be of great help to find a therapist to work through these things with along with sharing here on the boards. Two primary relationship - roommate and mom - have turned upside down it seems after a sentinel event regarding your health. I found I needed a village to help me find a firm path forward and have at different times needed to work one on one with a trusted mentor, an in real life small group of women working through similar life challenges, a T, and this wonderful place.

I hope you do have a group of people who you can trust to support you going forward.

Take some time and look around and when you are ready, join the conversations taking place on the boards.
The most powerful people are peaceful people.

The truth will set you free if you believe it.

candy

Welcome, HS25362!

Me, too, have read every single word and I just want to you to know that there is light at the end of that tunnel.
You are not crazy. You have experienced a lot of trauma and fear and you seem to be a very strong woman processing that many issues in such a short time.

Sometimes our health and our physical wounds open our eyes for the emotional wounds we carry. Wounds can heal, that goes for physical and psychological ones, and yes, we can heal. We truly can.

This is a good place to find support and validation. For me it was eye-opening that there were so many others who thought they were the crazy ones when in fact they were victims of abuse. Welcome again!

sarandro

Hi, HS25362...
Reading your story, I can fully empathise...I too had a diagnosis of a benign tumour two years ago (not growing as yet, so no intervention) and the difficulties it has brought to me and my FOO. My own family have been and still are very supportive, but my NM and sadly departed enF and siblings don't get how devastating it is and how it changes you.
Such a thing really makes you question life itself and how you feel about others and their reactions to it all.

Please be kind to yourself, never mind about others and know that here is somewhere you can get the support and understanding you need.XX