Rewired.
There is currently more and more research into the correlation between autoimmune diseases and PTSD as well ACE’S (Adverse Childhood Experiences). I have provided links to articles below if you want to dive in, but I am going to just simplify what I understand from what I have read and what I have experienced. Essentially the theory broken down in the simplest way is that that if you were being attacked as a child your brain/body will eventually learn to attack itself.
I will lift a veil here without telling who or what, but during my childhood, I received all sorts of messaging that reinforced that my world was not safe and that there was a lot wrong with me. Naturally, I landed myself in an extremely abusive dating relationship in high school which was immediately followed by other unhealthy dating relationships. I am not sharing this to expose anyone or to play the victim. That is irrelevant to what I am about to explain. I have done my work and am always doing my work around those experiences. I am not a victim. I am a survivor and what I aim to be is thriving.
There is a strong correlation between my last three Optic Neuritis attacks and the feeling of being unsafe in my world. My first attack happened a few weeks after a really bad and unidentifiable infection and a day after I went scuba diving. At the time, I just finished a long project that was extremely stressful and for a client whose core values and mission contradicted my own. Facing such a contradiction, I felt that the thing that I considered my biggest failure was being broadcast to everyone around me, but really, I was just seeing and feeling this pain alone. I remove the first attack from the equation of being triggered by feelings of being unsafe because there were too many factors. What occurred was finally just enough stressors to light up the circuit board to turn me into an autoimmune patient.
The second attack happened after I was violated by the person I was dating at the time. When I became aware of the depth of lies this person told me as well as having another six months of unknowing of my health due to his intentional negligence, I went into trauma for a few weeks. I was in a state where nothing in the universe as I knew it felt safe or trustworthy. Simultaneously I received unwanted and inappropriate attention from two of the maintenance men in my building and despite multiple complaints to the association management company and board, nothing changed. I would sneak down the halls of the building I partially owned and use the stairs so I wouldn’t be stuck on the elevator with one of the building employees. I triple-checked my locks and kept the blinds closed. To cope, I abruptly sold my home of thirteen years because the place I once loved now felt tainted and scary.
The third attack happened the day after I was abruptly told I had to move in five weeks during the first peek of the pandemic and when I had no employment. I realize, stepping back, that most people would not see this as a major stressor, but I can also see the attachment I had had to this space and what it meant for me. This apartment I had been living in became home and became my first safe place in a long time. I nestled in and made an art studio there. It was a new neighborhood where I could make space for myself. And it was my refuge when I had to flee Casablanca as borders were abruptly shutting down after things escalated quickly with COVID-19. I embraced the isolation; cooking, making art, and taking care of myself. But in a second it was gone, in a text message, on the morning of my birthday. I was devastated.
Optic Neuritis patients often have a proceeding attack in the opposite eye of the original attack. Five months after my third attack, which was in my right eye, I had my fourth attack in my left eye. In the time in between the attacks, I bought a house directly from the owner who breached the purchase agreement and then proceeded to harass me. In summary, it was not cool.
I then hired someone I used to date as my handyman. I trusted him with my home and wrongfully my well-being. I naively hired him assuming he ended a dating relationship based on the things he said about the person he was dating and the relationship. But he was still in the relationship when he started working on the house. Based on multiple things he said and did, he implied that the person he was dating was unstable, that he was afraid of her, and that she harbored bad feelings towards me. I was also on prednisone which for me, causes anxiety, paranoia, and insomnia. You can shake your head at me. I am aware I should have terminated the agreement on the spot. I have no excuse. I was overwhelmed by the work the house needed to get into a manageable state. In hindsight, women who are alone having a health crisis, in a pandemic, should not buy houses or hire people the once dated as contractors.
George Floyd had also been murdered that spring six blocks from my house. My handyman put in security cameras, security lights, secured all windows and doors and urged me to take gun safety as Minneapolis changed abruptly after that day. All these messages and I felt unsafe in my own home. Simultaneously I was asked inappropriately to step in to caretake someone else who was not a supportive role in my life. You guessed it, attack four.
Why am I telling you all this shit? I am not telling you because I am wanting to tell you a sob story or that I blame these people for my attacks. I take responsibility for my role in the narrative of my life. I am an active player. I am laying out the pattern for you that I have observed while dozens of MRIs, four spinal taps, thousands of blood tests, etc. have turned up no information regarding how to stop my ON attacks.
The biggest challenge of my undiagnosed issue is that my ON attacks are triggered by stressors. Those stressors can be any stressor including, but not limited to, viral, bacterial, fatigue, emotional trauma, etc. There is no gauge for measuring these stressors impact on my body nor do we know where the threshold is that will cause an attack.
So, here was the issue as I could grasp it, again, we don’t know my threshold, we don’t understand why body is having this damaging response, we can’t control the response, and I can’t always control every external stressors like a walking out into gang gunfire while taking your trash out after dinner. So, what did I do with that little information and a fear that if I don’t get a handle on, I will be blind?
I began to work on rewiring myself, first by starting to address my own trauma and then to rebuild those wires. How does one do that? I really wasn’t sure, but I knew what had worked for me in the past and I started there. I approached this issue from all angles. I can’t tell you a specific methodology, except that my approach was completely holistic. When we think of holistic, I think we think, just take some herbs and see someone who talks in an ethereal way, but real holistic medicine addresses the whole person including mind, body, spirit, and emotions.
Here are the things I did and the things I could control. I restarted EMDR therapy (Eye movement desensitization and reprocessing). This therapy has been life-changing for me and I have experienced tangible results when I am practicing it. I will tell you that having the right practitioner for you is key. My therapist uses different methodologies and approaches things with very science-based practices as well as very spiritual-based practices. She has also worked with a lot of patients who have had to address nervous systems that are lit up due to the stress of being a patient.
I searched and fought for a medical treatment that made the most sense to me, I wasn’t afraid of, and felt right. I am currently receiving IVIG therapy versus immune suppression. I am optimistic about it, but strongly feel a key component in it working is that I feel good about what I am getting. I meditate which to me is the practice of letting go of the feeling of attachment to thoughts and having automated reactions to them. I can observe a thought or feeling without having a reaction to it.
I pay attention to toxicity or things that added inflammation whether that was household cleaning products or people who are energy vampires. I pay attention to nourishing my body and healing my gut because it has more than 100 million nerve cells in it. I go to acupuncture regularly to keep my energy and blood flowing as well as to release oxytocin into my system. I practice art, cultivating my creativity using it for processing and release. I get regular massages to soothe and comfort me. I practice verbal gratitude to keep my brain focused on the good that constantly happening around me. I aim to sleep at least nine hours a night. And a hell of a lot of other things. I did and do all this while maintaining my career, but that leads me to, I don’t work as much. I can’t. If I work too much now, I won’t be to work later. In fact, then I won’t be able to do shit later.
So, too many paragraphs later you want to know if it is working and how do I know it is working. I know it is working, one because I feel better mentally, emotionally, and physically than I have in a long time. I have more energy; I am more resilient, and I can tell my brain function is clearer. It is easier to stay on and complete a task. I am also extremely happy. I experience joy on a daily basis and my life feels like it is moving with the current versus against.
But you know what else, I have become aware of the loss of some things. I have always been extremely social and embraced by friends and their families. Often, even though on the surface I was having fun, I would always have an internal pang that told me I was there with them because I had been rejected by my own clan. And as a woman, the wound of the child I did not have would open with other’s families. I recently noticed that while visiting an old friend, her dad, sister, and kids at a cabin, the absence of that pang. I started to take stock and noticed that pang had left some time ago and I had that it had been replaced with an acceptance. An acceptance of myself and that I had found my clan. My clan is actually huge.
And then another physiological shift registered. Probably one of the most stressful situations that has ever occurred in my life has been happening. Something that is specifically tied to my childhood trauma and all those messages of being unsafe have been again targeted right at me. This time though, they blow past me like a breeze. The previous fight and flight mechanism that would come on in my body has quieted down if it even turns on at all now. In the past, I would feel what I think people many describe in these situations as anxiety. I would feel an uncomfortable internal hum that I could not turn off easily and that would keep rattling under the surface. It is not there this time. I can now find stillness and calm that I can turn to at any time with different tools. I am perfect at this? Fuck no; there are things that wind me up like wreck-less drivers. But I can tell you, I feel changed. At 43, I feel untethered to some chains that use to weigh me down.
So, what does this say to me? It is saying that I am healing. That healing is possible. You can go beyond medicating. You can go beyond sustaining. I will tell you that at times in this process I felt I was being shoved right out the birth canal again. I am not saying I am anywhere done. I am not saying there is one path on a journey of healing. I am saying that we are too complicated to diagnose and medicate. I am saying pay attention to all those feelings and use that as a compass to get better. You can make a map to healing. Trust your feelings. They are messages that are trying to tell you something. Pay attention to what your body saying to you, it is trying to help you heal. You can heal.
Cumulative childhood stress and autoimmune diseases in adults.
Adverse Childhood Experiences Increase Risk for Chronic Diseases - It's Not Psychological
Are Childhood Trauma and Chronic Illness Connected?
A Deeper Look: How Your Stressful Childhood Led to Autoimmune Disease
