Neurofeedback
“Many of the patients I have spoken to are aware that those in the outside world are appalled by, if not afraid of, those with disabilities. It is as if having a disability were contagious, which it is. Most of us at some time in our lives will suffer from a catastrophic health crisis that will make us feel isolated and afraid.”
~ Hanif Kureishi’s memoir “Shattered”
My Journey with Neurofeedback (link to pdf)
Dedicated to those who find themselves isolated & afraid
Trigger warning: This content includes references to suicidal ideation. Please take care of yourself while reading.
Neurofeedback and the Reverse-LC trial drug have helped me finally move from surviving Long Covid to living with Long Covid. The two have not eliminated the fatigue or brain damage but they have quieted the noise, slowed the world down, and brought the pain level wayyyyy down, which in turn has allowed me to be more present in and outside my house.
The trial drug, while I don’t know if I’m on the placebo or not, has lessened the daily headaches to weekly and has reduced the leg pain to almost nothing. You don’t realize how much brain space pain takes up until it is gone. It’s as if my brain was a frustratingly slow 2000s. If you opened the task manager, you would see pain using an absurd number of CPUs.
Neurofeedback has also immensely reduced the background CPUs. Reentering the world with a brain injury after having Covid was something no one could prepare me for. My world was a 50,000 piece Lego set that was demolished and I was trying to put it together from memory while balanced on a shake plate. Every place was uber charged with sound and sight energy that repeatedly zapped me and quickly drained my battery. While my body was physically present at the girls’ events or breakfasts with friends or family parties, I could never relax or be mentally focused. I appeared to be engaged, but was constantly in fight or flight mode, waiting to crash, panicked about how it would impact those around me who would have to take care of me, and dreading the pain and soul crushing fatigue that followed.
I found Neurofeedback completely by accident. One afternoon, my niece and I were discussing therapy and she said, “I’m done with talk therapy. It’s just not helping anymore. I know all the things I’m ‘supposed’ to do to help myself, but they aren’t working.” I couldn’t agree more. I had been working with an amazing therapist that I loved and who had gotten me through the first three years with Long Covid but I felt I hit a wall. I was finding it impossible to live with any joy. Every second of every day was a grind of fighting to improve in the few good hours I’d have followed by suffering the consequences locked in my painful body afterward. I purely existed for my family and was resenting them for it. I couldn’t enjoy celebrating their milestones or events because I was mired down by the logistics of going from A to B and anticipating it not ending well. Over and over as the pain creeped in and I was isolated in the silence of lost speech I would think “If it wasn’t for Brian and the girls, I could quit. I wouldn’t have to do this anymore.”
The “Xanax thoughts” I’d had when I first was sick had retreated to the background but now were resurfacing with gusto. When I wrote “In The Space Between”, it was very hard for me to admit I was having suicidal ideations. I was embarrassed, overwhelmed, and concerned I would scare people. In the time since, I’ve learned more about trauma, chronic illness, and dreaming of it all ending. I have a favorite trauma therapist I follow on social media, Dr. Glenn Patrick @DrDoyleSays and his writing about suicidal ideation hit home for me.
“People are going to freak out about suicidal ideation. I wish that wasn’t the case, but it is. It’s not their fault. They don’t know what to do with it. And the very idea of someone, let alone someone close to them, fantasizing about killing themselves is upsetting to them. But the fact that people do tend to freak out about suicidal ideation necessarily means many C(omplex)PTSD survivors end up not acknowledging it, let alone exploring or discussing what it may mean.
The truth is, suicidal ideation tends to be very common for complex trauma survivors. I dare say it’s among the most common symptoms CPTSD survivors experience. One thing I know for sure about all survivors who experience suicidal ideation, however: it does not serve us to ignore it, become fixated on or overreact to it either. I really hate that most mental health care settings have made it virtually impossible to meaningfully discuss suicidal ideation or understand its role in CPTSD. The reality is that the fantasy of suicide actually helps us psychologically survive certain things. It can be scary, overwhelming, and stressful— but it is a symptom. And we do not shame ourselves for symptoms. We approach symptoms with patience and compassion.”
I feel this is important to convey as well from Dr. Glenn Patrick”
“Suicidal ideation in trauma survivors is often about much more than wanting to die. Very often it’s about feeling trapped. Often it’s about feeling controlled. Sometimes it’s about feeling ashamed. At times it’s about feeling disconnected to everyone and everything.”
For me, I felt trapped by an unknown chronic illness that stole so much of my life and trapped in a body that constantly betrayed me. And although I made an effort to connect with family and friends and was physically present, mentally, I was putting on a front. Bessel van der Kold described my brain in “The Body Keeps The Score” when he wrote, “Traumatic stress often causes excessive activity in the right temporal lobe, the fear center of the brain, combined with too much frontal slow-wave activity. Hyperaroused emotional brains dominate mental life, decreasing executive functioning.” Again, the CPUs were running too high.
My clouded brain kept a divider up between me and everyone else. Van der Kold concluded that “neither drugs nor conventional therapy have shown to activate the neuroplasticity necessary to bring the capacities back online.” I decided to listen to my niece when she suggested I investigate EMDR therapy. “Eye Movement Desensitization and Reprocessing (EMDR) is a psychotherapy treatment designed to alleviate the distress associated with traumatic memories.” Trauma, huh? I wondered, “Do I really have trauma? Will a therapist that specializes in trauma think I’m being over dramatic? I wasn’t hospitalized, I wasn’t on a ventilator. Was it really that bad?” I decided yes. Yes, it was and continues to be. I was not living. I was existing and something needed to change.
Enter my new counselor, Jessica. During a phone consultation, I explained my Long Covid symptoms and Jessica told me EMDR was probably not a good fit for me because of the severity of my spinning brain. Instead she described a different type of therapy, neurofeedback. She described the human brain sections as individual towns that are connected to each other via bridges and neurofeedback could help repair the bridges. Jessica continued describing the treatment plan but I didn’t hear anything else. I cried imagining the possibility of finally undoing the hurricane like damage in my brain. The results from my neuropsych testing at the University of Chicago in May 2023 showed I had not lost memory or knowledge, I just couldn’t access it in any reasonable amount of time. Now I understood why - the Covid hurricane washed out the bridges.
Before my first meeting with Jessica, I googled neurofeedback to learn more and was immediately put off by the description given by the Amen Clinic:
You will retrain brain wave imbalances while watching a movie or television program or playing a video game. For example, if you struggle with anxiety it will be helpful for you to generate more calming alpha waves. Each time you do, your brain will get a little reward on the screen, and when you shift back into a more anxious state, the feedback monitor and screen will let you know so you can make the mental adjustment to increase your alpha wave activity. With repetition, this process retrains you and your brain to manage your level of anxiety.
What was I, one of Pavlov’s dogs? I need way more than ‘a little reward’ on a screen while watching a movie to help me. How will flashing a smiley face or a thumbs up while I’m concentrating undo three years of damage?
But, as desperate people do, I was willing to try anything to not resent my family.
I was expecting Jessica’s office to be an elaborate set-up of monitors, chords, and electrodes but it was a regular therapist’s office with a desk, couch, and two chairs. For the first three sessions, I sat on the couch while Jessica sat across from me in a chair and asked me detailed questions about every aspect of my life. There was no counseling, no electrodes, just direct questions. I made a concerted effort to be brutally honest and not hide or glaze over details.
I didn’t know it then, but Jessica was taking the information I shared and mapping areas in my brain to target. According to EEG Info, “The clinician chooses what sensor placement to use and what frequency range to work in based on the client's complaints, which are evaluated in the context of personal and family history.” Through my narrative, she could see the protections and coping mechanisms I had built to keep myself safe from the time I was young. While I was aware of some, specifically the ones I couldn’t use anymore like exercise, controlling food, perfectionism, and people pleasing, there were others I didn’t even know I used.
I was shocked to learn eating disorders and OCD are tightly entwined and many of my coping mechanisms fell under the OCD umbrella. All I knew of OCD was extreme behavioral compulsions often portrayed in the media like excessive washing hands, walking only even or odd steps, checking and re-checking to see if a door is locked. I didn’t know OCD includes mental compulsions like rumination, mental rehearsal, and self-reassurance.
My chronic illness is not the same as living in a traumatic volatile environment or living with OCD but there is one major similarity - the constant vigilance of not knowing when I won’t be safe. For me, safety means being safe in my body. My recurring nightmare is that I’m in the middle of a crash alone and can’t communicate. Regardless of the situation you're in, it is hard to focus when danger lurks around every corner. My danger could be stress, noise, commotion, activity and the level I could tolerate was never the same from day to day.
Jessica and I started each session by me describing my challenges at work, at home, and if I went anywhere in public. Jessica used my deficits to decide where to position the electrodes. The NIH has an in-depth description of what parts of the brain correspond to functions and I have deficits in all areas of my brain, specifically:
Frontal lobe - sustained attention, emotions, working memory, and executive planning.
Parietal lobe - on the left naming objects and mathematical processing and on the right spatial recognition
Temporal lobe - on the left reading and on the right anxiety.
Sensorimotor cortex - handwriting and speaking.
When we started neurofeedback, Jessica placed an electrode on the hairline of my forehead, one in the top center, and one on the left and right of my skull, just above my ears. She had a variety of moving screens to watch and I selected what looked to me like the Northern Lights. Immediate tears came to my eyes. I was exhausted from fighting Long Covid and I imagined escaping to heaven. The aurora was so peaceful and inviting, I thought maybe it could take my pain away. Emotions and thoughts overpowered my brain circuits and I began to downslide. I hunched over and curled my toes in my shoe. Jessica stopped the session to check in with how I was feeling. My speech faltered and I could not find words or form thoughts. I’d only been watching the screen for fourteen minutes. Jessica said the goal was to work up to thirty plus minutes. Sure. She also said the right and left electrodes were for emotions and eventually we would move to ____, then ____, then ____. I was staring at her mouth but not understanding anything she was saying. All I knew was it sounded like an insurmountable way to go until I was better.
I drove home and stumbled into my house the way I used to after physical therapy and immediately fell asleep. I did not recover when I woke up. I was back in bed by eight and couldn’t tolerate television, noise, or reading. I reflected on my session and analyzed what I did and did not like about watching the aurora. The loud sound and the red color made me anxious because I wanted it to stay soft blue. The soft blue allowed me to be sad, not angry. It allowed me to feel close to my grandmas. Why did I want to be with my grandmas? Asking my grandmas if I could come to heaven was my current version of I want to go home, something I used to say when life got hard. When I was younger and I needed comfort if I made a mistake or if I was hurting, I often cried, “I want to go home.” Like in sixth grade when I forgot my homework and was so nervous I threw up or when I was at BC worried I was going to get a D in Physics and lose my scholarship or when I was alone in the hospital pregnant with Elizabeth and the doctor told me I had to decide if I wanted them to use life saving measures if she was born that night. My current version was feeling alone because I couldn’t say to anyone I wanted to quit, that I was tired of fighting so hard to barely make any improvements.
But did I really want to quit? Who was making me get up each day and put one foot in front of the other? What was my why? I wanted to blame the girls and Brian. They were my why. But how to not resent them?
My second session of neurofeedback fared a bit better. I changed my selection to watching a waterfall in a peaceful forest. I like the water but became agitated as the screen moved around because I was scared an animal would jump out of the trees and make a loud noise. Jessica noticed and paused our session to check in with me. She said although the scenery was pleasant, I was anticipating the peacefulness going away. Yes, I was already afraid of crashing after what happened in the first session. Interesting to me was the parallel of how when I am out in public, even when I am comfortable in my surroundings, agitation sneaks up on me in anticipation of crashing.
Van der Kold also describes neurofeedback as helpful because “patients see the patterns of localized electrical activity in their brains responsible for difficulty focusing or lack of emotional control because it shifts from self-blaming to learning to process information differently.” Unfortunately I came from the mindset that I could outrun or out work anxiety so I thought it was a negative reflection of my self worth that post-Covid I could not manage stress. When the neuropsych doctor at University of Chicago said my inability to locate information in my brain increased my anxiety level to a point that made it impossible to find the information, I was highly offended. I believed I had control over anxiousness. I guess if you call excessive exercise and disordered eating control, then I was an expert.
After five sessions of neurofeedback, Christmas arrived and we spent a few days in Tucson, AZ with my parents, siblings, and nieces and nephews. I had not traveled on an airplane since July and had only made trips to Wisconsin and Michigan since. I did not fare much better this time. The airport was more than overwhelming. Van der Kold explains some trauma patients “overreact to sounds and light, a sign that the thalamus has difficulty filtering out irrelevant information. Arousal, which is supposed to provide us with the energy needed to engage in day-to-day tasks, is revving in high gear interfering with proper wiring of basic processing functions.” By the time we made it to the gate, I could not walk or speak. Liz told me I looked like a cancer patient.
I described how I was feeling in a post after we returned home:
In an effort to find a way to live with Long Covid, my current therapy is focused on putting out the fire and calming the static in my brain using neurofeedback. I describe my brain like a heart - it goes back and forth between flatlining, tachycardia, and AFib whenever it wants. And since a defibrillator for the brain doesn’t exist and I can’t shock my brain back to functioning, I had to find an alternative to deal with an excess of fast or slow brain wave activity. The goal of neurofeedback is to teach my brain to modulate dysregulated brain wave patterns on its own. I can’t explain how it actually works, but the following is an excerpt from a memoir of a concussion recovery that sums up my journey:
“They say heal. What they mean is retrain. And everything trains your brain after an accident. Walking down a street. Counting change. Dealing with your mother. Recalling the name of your cousins. Talking on the phone. Listening to directions. Going in circles. Being back out in the world is free therapy for vision, cognition, emotional regulation, stamina. The brain is plastic, in a way—is moldable. Every time you think, feel, attempt something new, neural pathways light up and make new connections. This is neuroplasticity, this learning of new skills and approaches, this doing things differently.” ~ Annie Liontas
As January turned into February, Jessica asked one day, “Do you ever think positively about the cane?” and I laughed out loud. Hard. She asked me to remember how I felt when I used it the first time and I described the pure relief that washed over me in physical therapy as I steadily cruised around the gym. She asked me to reframe my cane as a positive addition to my life because it allows me to do things I wouldn’t otherwise be able to do.
Up until then, I equated no cane with being physically and mentally better. I would often describe attending an event as hard because “I had to use my cane.” My new goal for myself became to stop “using my cane” as a negative descriptor. Instead, I would think of my cane like a front pack for a baby or a back pack for a child. Could you carry a baby or child instead of putting them in a pack? Sure. But isn’t it easier to get things done like when Brian used to mow the lawn with Eleanor in the backpack? Definitely. I could see the cane the same way. It made it easier for me to participate in life. As well as quieted my brain down because I could spend less brain space worrying about moving safely.
At the same time, my neurofeedback sessions moved away from purely watching scenes to trying to actively paint or play basic games like pong or number ordering but I hadn’t progressed much in time. I was still amazed at how I could go from normal to antsy to sad to shut down in the sixteen minute session. Jessica asked me to describe what happened in my brain when I couldn’t talk. No one had ever asked me to put into words what the inside of my head felt like. The best I could come up with was to visualize too much current rushing to a circuit breaker and blowing it. Once it blew, I couldn’t flip a switch to reset it, instead I needed to block out input so I closed my eyes. Jessica described neurofeedback as a way from my brain to train itself to slow the current down so not as much information was rushing in at once.
Eventually signs of neurofeedback working began to emerge. I watched a “60 Minutes” segment about veterans traveling to Mexico for psilocybin therapy to treat PTSD and one interviewee shared at the six month follow-up he no longer wanted to kill himself. I realized I no longer thought about quitting on the hard days. A huge win. I also traveled to Phoenix with my extended family for Liz’s senior travel gymnastics meet and while sitting at the pool with my sisters, Karen looked over and said, “I can tell therapy is helping you. You are doing so much better now than you did at Christmas.” It was true. I was feeling more engaged in conversations and while I still couldn’t last very long, the hour or two I was able to spend visiting, I was not fighting to stay present. Brian and I were also able to walk on the desert path above the hotel which I was not able to do in Tucson in December.
But that’s not to say the path to improvement was constantly positive. There were many bumps to come to remind me to stay true to myself and not fall back into cognitive distortions. Even when Karen said I was doing better and I could admit it was true, I was annoyed she didn’t see how hard I worked to be present and how I was very aware of the clock because time was ticking until my battery died. When I described the trip to friends afterward, I minimized my gains and continued to focus on what I couldn’t do. Rather than look back to the year prior when I couldn’t leave the hotel and be happy this time I not only made it to the team dinner, but also I went for hike, went to the meet, and even saw a few songs of a Grateful Dead cover band, I lamented that I had to sit outside the bar to listen to the band because it was too loud and too crowded and that I missed awards because I couldn’t walk across the arena at the end of the night.
My negative self-talk came to a head in late March when I was so pissed at myself for having a very tough day one Friday. It just so happened that Liz’s final Illinois state meet, which was hosted by the gym of our long time friends in the northern suburbs, fell on the same day as the broadcast of my Long Covid interview with NBC5 Chicago. The anticipation of seeing how the interview turned out, traveling over an hour each way to the meet, worrying about Liz’s injuries, and trying to visit with friends and coaches at our last Illinois meet after twelve years burned my energy down to nothing. Again, I could not make it to awards or to dinner afterwards. I laid in the car and cried. I had been doing so good and felt like I was on an upward trend. Why was this day so hard for me?
In processing all that went on with Jessica the following week, I realized I had fallen back into my old habits of “shoulds”, assuming what other people are thinking, magnifying my physical appearance, and letting my emotions dictate my fear. I repeatedly told myself I should walk around and visit with other parents and coaches to celebrate Liz’s accomplishment of completing her club gymnastics career. I didn’t want them to think I was rude if I ignored them but as the meet went on, my walking and speech declined and I was embarrassed by my disabled body. I saw myself as a less than fully functioning mom. I couldn’t cheer on my daughter, her teammates, and her friends. All I saw was the pitying look in people’s eyes as I tried to move around. I imagined judging and assuming I was faking because I looked fine an hour ago. Anxiousness was rising fast because I was starting to not feel safe in my body. How was I going to make it to the bathroom before we left? What if I fell? How was I going to comfort Liz after a rough fall on bars when I can barely mumble a few words? How was I going to make it home in the car?
Watching my interview on the news did nothing to improve how I was feeling. I thought I would be happy and proud but I couldn’t get past how much I’d been through along with Brian and the girls. I was speechless and heartbroken. Reading the texts and posts of kind words overwhelmed me. I couldn’t accept the outpouring of love because I was drowning in “my life sucks and everything is so damn hard.”
During the next session with Jessica, I told her about my freak out, my panic. Jessica asked why, what was my thought leading up to it. I had no idea. She said that’s okay, sometimes feelings come so fast, there are no thoughts. She asked me to try to reflect on why I didn’t feel safe. First, I was so mad at myself and at Long Covid for doing this to me. Why the fuck can’t I handle anything? The minute my functioning level started to change I panicked? I hate change and I used to ignore it and push it down and run run run. Now I can’t, so I immediately want to flee. Why don’t I feel safe? Because I don’t trust my body. I can’t control it. I don’t trust my brain to not short circuit and steal my mobility.
We concluded that in future I need to be patient with myself, slow down when panic arises and remind myself I am safe. It’s okay to be up and down. I am surrounded by people to help me. “Control” and avoidance worked really well for me for 40 plus years. I’m only changing because my system broke when I got sick. It’s natural to try to go back. The patterns were ingrained. The problem now is the patterns have severe negative consequences on my body. I need to respect my limits and not wish them away.
As the school year ended, I was invited to apply to the Reverse-LC study through the University of Minnesota. Thanks to neurofeedback, I felt confident I would be able to travel back and forth to Minneapolis once a month for tests from July through December. I wasn’t in a constant state of fight or flight and was able to rationally talk myself through when I was on shaky ground. Like the first time I attended “Sit & Fit” exercise class at the recreation center. I was surprised at how well I handled the upbeat loud music and class of moving people. It wasn’t all roses though. At times I had to watch the lady next to me because I couldn’t look up, I anxiously awaited the Sit segment twenty minutes in because I couldn’t take another step, I couldn’t scissor my arms to the beat or move legs from knees together to knees out like the Parkinson’s exercise. I needed my cane to leave. But I made it through without panicking and went back throughout the summer. I had progressed to twenty minute targeted sessions in neurofeedback which gave my brain the strength to persevere through longer periods of commotion.
I began the drug trial in mid-July and adjusting to the medication set me back for about seven weeks. Body aches, headaches, digestive issues, and fatigue worsened. Mentally I was hanging in there because I knew what I was going through was for the greater good and whether the outcome was positive or negative didn’t matter because both would give researchers important information about Long Covid. On the other hand, it was not an easy time for my family or anyone who spent time with me to watch the regression happen or deal with my lack of engagement. Jessica and I made a plan to at a minimum go to work and drive Eleanor to school and practice and if I couldn’t accomplish both that I would seriously consider withdrawing from the trial. At the end of week eight as I headed to Minneapolis for my second monthly check-in, I finally felt like I had returned to my pre-July functioning level.
As I moved through September and into October, I saw noticeable improvements, sustaining up to thirty minutes of neurofeedback playing Sudoku or watching podcast interviews with no physical side effects. The CPUs running in the background of my brain were down to almost nothing. Without the low hum of sensory information flooding my brain, my speech and word finding fluency were noticeably better.
Up until now I hadn’t found a way to “live” since I got sick. The last major life change I had was having kids. I remember after Caroline was born, wondering when my life would go back to the way it was. Surprise, surprise, it didn’t, but Brian and I found joy again with the kids and with each other. Life wasn’t always a grind. But since getting sick, we were both always working. I was working to get better, stay safe, not crash, and then recover when I did crash. Even when I laid on the couch, zoned out watching mindless television, my Oura ring said I was stressed. How ridiculous that even recovery was stressful for me. With me out of commission at home, the demands of our life fell on Brian. He was always trying to keep the girls happy and fed, keep the house from falling down, and keep the cars running. No matter where he was he was never “off duty”. There was no checking out.
In October I was able to make it to both Caroline and Liz’s parents weekends and have fun. Real fun. Without fear. Finally, I wasn’t faking it. The NIU gymnastic team hosted a tailgate and I was fully present chatting with Liz’s teammates, their parents, her coaches, taking pictures with the group, eating hotdogs and hamburgers and moving steadily around. At one point, my dad nudged my elbow to get my attention. I turned to look at him and he had the biggest smile on his face as he giggled and said, “Look, you’re still standing.” Without hesitation or deflection I responded with an equally big smile with, “I know, right? Can you believe it?”
Jessica continued each week to ask what was going well and what was a struggle. I described the exercises I did at the recreational center that still made me lose my balance. Using the small pink ball, I’d either toss it from left to right in a rainbow while standing or toss it up in the air then bounce it on the floor all while following it with my eyes. Both made my head spin. I also described checking student work at school that made me grab onto the desk when the problems were crowded together or the answers were in a patterned format. Jessica targeted my vision and optic nerve by placing the electrodes at the back of my head. Any speck of doubt that may have remained about neurofeedback was swept away at my neurologist appointment a few weeks later at the end of October when my tracking was better than it had been since I got sick.
Since the first meeting with Dr. Cipriani in December 2021, she has told me I was one of her most severe Long Covid neurological cases. Now, we were both floored at my improvement. For the first time ever, I was able to track her finger moving from left to right and up and down without gripping the exam table for dear life and squeezing my eyes shut. I was also able to stand with my eyes closed without wobbling and I could bring my heel to my shin with only the briefest of pauses. While she was excited about the drug trial, she did caution that medication alone won’t cure my cognitive deficits. She is hopeful the drug will improve the physical problem in my brain but it cannot undo or repair the damage. Only therapy can rebuild what was lost and there is a chance it may never fully come back. Each person’s neurological deficits are different depending on the area of the brain that’s inflamed or impacted. Neurofeedback maps our deficits to drive therapy to improve, to target the part of the brain that was injured or attacked by the virus or by my own immune response.
The final piece that enabled me to actually live in my body came on my last trip to Minneapolis while listening to Messy, the podcast hosted by Christina Applegate and Jamie-Lynn Sigler. They interviewed Baylen from Baylen Out Loud on TLC who has Tourettes. Similar to MS and Long Covid, her symptoms can be exacerbated by stress or when she doesn’t feel safe so she strives to protect herself and her condition. But sometimes it is unpredictable and unavoidable. She called herself “dynamically disabled.” Oh my goodness, yes! Dynamically disabled described me to a tee. Just that morning, I traveled to Minneapolis using a wheelchair in the airport, a cane on the light rail, and as I listened, I was walking around campus. Later, after my appointments, the process would reverse as my mobility declines.
Sharing the term dynamic disability takes away the embarrassment that I am not always fully functioning and that my functioning level can change. One of the difficulties of a dynamic disability is there isn’t always a direct cause and effect to not feeling well but agitation increases the likelihood of it happening. Sometimes it will change predictably and sometimes it will seem random.
I never thought I wouldn’t be able to control my thoughts, my brain, my physical reaction to people, places, and events. I’m sure I’m not alone in once upon a time believing wholeheartedly in the pull yourself up by your bootstrap mentality. If I just work hard enough and think positively, I can fix myself. When that didn’t work, I needed to find help. I needed to put words to what was happening to me. I needed something or someone to help rebuild the bridges in my brain. I wanted to share my journey in case someone else out there finds themselves in the same situation. Please know that you are not alone. Keep talking. Keep asking. Keep trying new treatments, new therapies. Don’t stop until you find the help you need.
