4 Years of TBI Recovery: Reflections

Birthdays, anniversaries, dates of loss, life and other special events often lead to emotional reflections. Today marks four years since my life-changing traumatic brain injury. I am grateful to be here to reflect on the past four years. In the past, I have described this injury as a tick mark on my timeline of life that states: October 13, 2018 – day of lost humanness. It felt like I left myself on the ice that day and became a ghost.

There was a time in life where I felt like a giant. Nothing could stop me. Nothing could bring me down. My TBI seemed to smash me. I became miniature, so small no one could hear or see me anymore. No matter how much effort I put in, no matter how loud or persistently I attempted to explain myself and be heard, I was left with more frustration and felt further isolated because no matter the various ways attempted, I still could not be heard or seen. It’s like living in a completely different world than everyone else. I often thought, am I still amongst the living or did I die at the moment of impact?

I had to stop asking myself why this was happening to me and start asking how this was happening for me. What could I gain from this experience despite so much loss? I realized we can either become victims of our own lives or creators. Previously, on this date, it was a day filled with heaviness, despair and loss. While today could be heavy, focused on the pain and loss of the past four years and filled with mourning and grief, I am choosing to focus on what I have learned, what I have gained, and I am celebrating life. Every day I didn’t think I would get through, I did. Every moment I felt I couldn’t go on, I did.

We may look at something but do we really see? This injury impaired my vision but opened my eyes to the fragility of life. In just one second, everything can change. I took my eyes for granted, my brain for granted, pain-free days, energy, sleep, the intricate communication systems in the body we so heavily rely on unconsciously without stopping to truly think about. I took a simple drive in the car listening to music for granted, concerts, shopping at the grocery store, spontaneity. I took just simply spending time with people without any negative after effects for granted.

One of the most challenging aspects of this recovery is the invisibility of brain injury. There is such a mismatch between fighting for every single moment of every day and looking “fine” or “great.” I think of the quote, “Just because someone carries it well, doesn’t mean it isn’t heavy.” Unfortunately, many aspects of this recovery led me to feel invisible and it has been a fight to get to the point where I realized my injury may be invisible to most but I don’t have to be.

Every once in a while, someone might see a residual effect of it but this is not the norm. For the most part, it’s invisible and as time progressed after the injury, I felt more and more invisible. This only worsened as people and medical providers dismissed and diminished my experience. I had no energy left but spent it trying to convince people to understand and this did not serve me well. I realized I couldn’t change someone else’s mind and committed myself to no longer trying to change the minds of people committed to misunderstanding me and my recovery. After all, by continuing to be negatively affected by the inability of others to change, I was also refusing to change.

After connecting with many people on similar journeys, this seems to be a common experience. You don’t see the pain we have learned to hide so well. You don’t see how we pay for it during and after a social event we had to muster up all of our energy to get to. But when we get home, the main event is on the bathroom floor with the toilet or rolled up in bed in pain. And the cost of being present for one seemingly simple activity will require several weeks to gain energy and strength back.

I realized those people are in the stands and I am on the field of my life, living it. It’s my experience and there are many spectators. As with any sporting event, some judge you, some cheer you on, some boo you and call you names, some revel in watching you fail, and others feel like they win if you win. We can choose who is in our corner. We can choose what we hear. We can choose what we think. We cannot choose how someone else thinks nor what their perception is.

For years, I was constantly yearning the past and trying to put myself there – somewhere familiar and safe although it didn’t feel familiar anymore because I couldn’t remember what that state of being felt like. “Normal” was gone and I had forgotten what that meant. While I was yearning the past, there was no way I could move forward. I had to let go of who I thought I was and re-invent myself. I realized the familiarity was holding me back. Change is scary and uncomfortable and many don’t reach a point in their lives where they want to change until something becomes so bad and the current situation is more uncomfortable than the prospect of change. Some decide it’s time because it finally got bad enough. I was resistant to change for a long time but we are not stagnant beings.

I realized it would be concerning if I weren’t changing and growing. Everything is changing, evolving and growing at any given moment. This includes ourselves. It would be a bigger tragedy if I remained untouched, unchanged, unevolved. Because every opportunity, good or bad, is an opportunity for growth. We can wallow in it or accept the opportunity and end up with wisdom that will last a lifetime and for generations to come.

I had felt really far from others and so out of place, so disconnected, so unhuman, that it was like I was trying to leave me behind but I realized I am alone with my thoughts a lot of the time. To be comfortable with that, I must be comfortable with myself and my emotions. This meant I needed to learn to be kind to and love myself. My life was filled with external validation. Playing competitive sports my entire life, I became used to this – congratulated for my play and achievements with ceremonies, awards, trophies. This was all praise for what I did not who I am. This then bled into my career as a physician assistant – I spent most of my life giving to others which also gave me a sense of external validation. I was successful and accomplished because I performed well in hockey and performed well helping and saving lives.

These two things were so intertwined in who I was and became my identity. I’ve truly come to realize in full how this was detrimental because very suddenly, I could no longer help others as the injury forced me out of my career as a PA and a hockey player. I had an identity crisis and felt so lost. Who am I without those things? Am I as a person strictly what I do? I realized I needed to create my own inner validation and become content within myself so that I no longer needed external validation from anyone or anything. This is not an easy feat but I can say I am closest to this now more than I have ever been in my life. I think it’s important to stop and think about what roles you play in your life, what defines your identity, and who would you be if you suddenly were not able to perform in those roles anymore?

I started to become disheartened and angry with the majority of medical providers seen during this recovery. These were the experts supposedly trained to get me better and help me but this only turned out to be the opposite. I realized they weren’t intentionally trying to hurt me or worsen my recovery; they were uninformed and unwilling to search further.

I am grateful for the providers that allowed me to slip through the cracks, who left it all up to me to fend for myself. I am grateful for the providers who set up roadblocks, prohibiting me from getting better. To them I was just another number or statistic. I was faceless. I became invisible. They fueled a fire within me to find a better way. A passion was ignited. The care I received had worsened my condition – physically and mentally. Somehow through the rubble, I’ve come out stronger than I was before and I now know there is a better way.

Limits were placed on me but I am choosing to be limitless. I was told I would likely never practice medicine again. I am grateful for those providers who told me to accept there would be no more improvement because they helped fuel my passion and lit a fire in me to go out and bring good into this world. I will practice medicine again and when I do, I know just the type of provider I want to be and the type I don’t want to be. I also know the person I want to be to change a little piece of this world.

Maybe for the first time, I am truly coming alive. I think of one of my favorite quotes of all time by Howard Thurman: “Don’t ask yourself what the world needs. Ask yourself what makes you come alive, and go do that, because what the world needs is people who have come alive.”

Many are dealt unfortunate circumstances in life and in turn shut down and put many walls up. I made a commitment to myself long ago that I will not be hardened by this experience. Rather, I will be softer, kinder, sensitive. I will love deeply and fiercely, not only others but myself.

Through lots of practice and continuous efforts, I have learned I am not broken. I am adequate. My story matters. I deserve the same love I give away. My story is my magic. There is always something to be grateful for. I should always trust my gut. I know my body better than anyone. Honesty and integrity are two of the most admirable strengths to have. Life is beautiful even in the darkest of times. I am enough. I am not invisible.

After going through years of pain and suffering, I realized I have been growing through years of pain and suffering and that is an important perspective to have with anything in life. Do you go through it or do you grow through it? Do you lose or do you learn? This traumatic injury turned into an opportunity for me to really look within and ask, “What do I want for myself?” It turned into a reset of my worldview – seeing things through a different lens.

I don’t know if I believe everything happens for a reason. I sat so many times and cried thinking there could be no good reason for this. I struggled with my faith over and over. I became pissed at God for a long time. But I trust this is where I am supposed to be and this is the pace I am supposed to go at. I still don’t know if I believe everything happens for a reason, but I’ve come out of this with a worldview that is painted with kindness, patience, empathy, compassion.

I see people walking around, understanding I could never know what they are going through just by looking at them. After persistently trying new therapies over the past four years, this taught me I have the guts to fail because that means I have an unwavering passion to continue to get up and try again over and over. I have learned that maybe when it feels like things are falling apart, they are really falling together. I have learned to be kind even when life isn’t. I have learned to count myself in and stop counting myself out. With any challenge in life, we can either allow it to extinguish our flame or use it as fuel to ignite our passion.

I am excited for what is to come. Albert Camus wrote, “The only way to deal with an unfree world is to become so absolutely free that your very existence is an act of rebellion.” I am becoming free. Who wants to be a rebel with me?

Today, four years later, I am choosing to change the tick mark on my timeline to: October 13, 2018 – the first day of my greatest transformation to becoming so absolutely free that my existence is an act of rebellion.

“The Ghost in My Brain”

I had the intention and goal of finishing a book titled, “The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get It Back,” prior to my first appointment at the Mind Eye Institute back in August, however, this was not fulfilled due to my persistent symptoms. I finally finished this book which I would like to spotlight. This book encounters Clark Elliott’s personal TBI recovery. It is raw, analytical, and will leave you speechless countless times. It entails the ghost of who he once was following his TBI and how it returned.

I first learned of this book in 2019 as I attended a TBI support group. It was included in the presentation by my neuro-optometrist at the time. It was on my list of books to read, the list stacking up as I had and have not been able to read like I used to. I was reminded of this book after I scheduled my first appointment with Dr. Zelinsky at the Mind Eye Institute, and made it my goal to finish it prior to our trip to Chicago, because it was the work of this doctor that turned Clark’s life around.

For other concussion and brain injury sufferers who feel isolated, misunderstood and alone, this book can be very beneficial to you. And for the loved ones of those suffering, this may offer you more understanding to the complexity of the injury and experience. Only a few pages in, I was brought to tears as I had witnessed pieces of my own experience flash before me like a film reel. I only wish I could have read it faster! It’s a frustrating thing – having the desire and passion to do so much but my brain won’t let me.

The truth is, we don’t always stop to appreciate just how miraculous the human body is – the intricate functions and systems of the brain that allow it to run and just how much we take for granted on a daily basis. For me, I took so much for granted and it fully hit me when those important systems we don’t stop to think about, stopped working.

This injury led to an identity crisis but it was interesting because it wasn’t just about losing my job, purpose and normalcy; it was about the overwhelming feeling of losing myself. It was as if I left myself there on the ice that day. It led to a great reflection about identity and how we identify ourselves and determine our self-worth by external entities. And for the first time, it really made me stop and think about what forms intrinsic identity and self-worth. But it seems in our society, we are defined by these external entities such as sports, occupation, school, etc.

I fully realize from this experience the magnitude of the societal misconception of brain injuries. I think the invisibility of the injury plays such a huge part in this, but also even thinking back to my hockey career the culture was such a way that head hits weren’t taken seriously, and we would do everything in our power to cover it up, downplay it and pretend everything was fine. I risked my brain – my own personal health – to not let my teammates down and to not be viewed as weak. That certainly caught up to me. While the awareness has come a long way over the past several years with the incidence and concerns arising in sports, there is still such a long way to go.

I have reflected on all of the providers I have seen in this span of time – the ones considered experts – who dismissed me and my experience and unintentionally sabotaged my progress. It ultimately led me to feel like I had to downplay and belittle my symptoms too which led me to feel very isolated and alone – like I had to fend for myself and do this alone.

I deeply relate to Clark’s experience in his book because just one of the (many) things that stood out to me was the meticulous documentation of his experience. From the first days following my impact to this current day, I have documented everything I have experienced like a mad scientist, looking for clues, trends and patterns that would help me get back to…me. Because out of desperation, I was longing for the feeling of being whole again. The truth is, it was such a deep longing that I had forgotten what that looked or felt like anymore. Because on the trajectory of my life, there was suddenly a tick mark on my timeline at the moment of impact that said – October 13, 2018, lost humanness.

The coolest part is that I am finally gaining that back and I am very confident in the power of neuroplasticity, the brain’s way of healing itself. I am determined to prove all the doctors wrong who told me I am stuck like this, that I may never be able to work in medicine again and to accept this as my “new normal.”

I have been inching in this recovery over the past three and a half years. It all adds up even when you can’t see it. Now, it is a feeling such that I am getting closer to myself, as if a slow reunion is taking place. If there were a spectrum of longing, from who I once was to now, the gap seems to be getting smaller and closing in. Sometimes, at random, I burst out into tears because despite the difficulties in the transition of re-wiring my brain, it feels new and comes with a delightful curiosity as if I am experiencing things for the first time.

Maybe, because I have been living in this dysfunctional state for so long, it feels like the first time though it is really just what it feels like to be getting closer to functioning properly – to be whole. And that is a feeling I had forgotten.

I know the ghost in my brain is returning, and I have so much yet to create in this life.

Concussion Myths Debunked

At a recent appointment, a provider was astounded that I had suffered a brain injury and that my recovery was so prolonged. The reason? She said, “Wow! I cannot believe this happened despite you having a helmet on!” As I have been on a mission to break these societal misconceptions, this again struck me as they remain very prevalent, not just among lay people but among those in the medical field as well. This is rather alarming as these are the very people you are supposed to go to for help and treatment in your recovery. If the medical providers do not even understand traumatic brain injury and all its complexities, how will others understand it? How do we break this perpetuation of misunderstanding? In this post, I will debunk the most common concussion myths.

You can sustain a concussion without bumping your head. The forces of the head suddenly moving forward and back as occurs with whiplash or a sudden side to side movement of the head is all it takes. Side note – Due to these forces, you can sustain whiplash without sustaining a concussion but you cannot sustain a concussion without some level of whiplash injury.

No helmet can protect against concussion. While it can protect against skull fracture, bruises or abrasions of the skin and bleeding under the skull, it cannot protect against concussion. Why? What leads to this injury is the sudden acceleration and deceleration of the brain within the skull. No helmet can stop this from occurring.

To visualize how or why helmets do not protect against this injury, this is the Balloon Brain Experiment:

Omalu Bennet, *Brain Damage in Contact Sports,* 2018

The balloon inflated with the addition of a small amount of water inside represents the brain. This balloon is placed inside a closed jar that contains a few drops of water; the jar represents the skull and the water represents the cerebrospinal fluid that creates a film on the brain inside the skull. When you pick up the jar and shake it or you hit the jar, the balloon jolts and bounces around, hitting the jar. This is the brain hitting the skull. When you add a towel around the jar representing a helmet and shake or hit it again, you see the same thing happen. This occurs whether you add a second or third towel for “more protection” – there is no protection and no way for the towel (helmet) to prevent the force and movement of the balloon (brain) inside the jar (skull).

90% of concussions do not involve loss of consciousness. This is dangerous as someone may believe they have not suffered a brain injury because they never lost consciousness. It is also important to note that loss of consciousness does not mean the injury was more severe nor does it have any basis on how long the recovery will be.

Every concussion is unique and every concussion is complex. Symptoms may not appear for hours, days or weeks after the initial injury. Some effects may not even show up for months or years! At that point, the association between the symptoms and brain injury may have been lost and the brain is never addressed as the underlying cause. Many end up disabled and suffering for years for this reason.

You may feel okay because your symptoms are gone but this does not mean the brain has healed completely. As previously mentioned, there can also be a delay in symptom onset following the injury so you may not even realize you have suffered a concussion. Some symptoms may show up immediately and then resolve while others may not present until much later. On a physiological and cellular level, the brain can take much longer to heal and the lack of symptoms does not mean that healing process has completed.

It is wise to always seek clearance from a medical professional specialized in all aspects of concussion to avoid long term symptoms and worse, second impact syndrome in which you suffer a second concussion before the first has healed which can lead to sudden death. The specialist must be carefully researched, as I had seen at least a dozen providers labeled “specialists” who were very clueless in the process.

While a CT scan or MRI can rule out other serious issues such as brain bleeds, masses and skull fractures, the damage done to the brain from a concussion cannot be seen on imaging. A concussion is a clinical diagnosis meaning the clinician makes the determination based on history, symptoms and physical examination. There are, however, other functional scans and tests that can show brain changes consistent with this trauma.

Concussions are very complex for many reasons. There is a cascade of cellular and physiological changes to the brain after the injury which are unseen to the eye. Symptoms can be physical, intellectual, emotional or psychological. This is why it is imperative to find a provider who looks at you as a whole and addresses the underlying cause of the symptoms.

The first thing you might associate with concussion is sports. Falls are the number one cause of concussion followed by motor vehicle accidents. This is not something just athletes should pay attention to and seek awareness of but all people. You never know when you might find yourself or your loved one in this situation.

The old school thought after sustaining a concussion was to lie in a dark room for a few days to a week for mental rest. This has been found to actually be detrimental to recovery. If a provider is recommending this, find someone else. This is a critical window in the recovery as prolonged rest and decreased movement actually increases the chance of a prolonged recovery. Too much activity too soon can worsen the outcome just as too little activity can.

Limited mental rest is now recommended in the first 24-48 hours following the injury, meaning taking a couple days off of work or school, sleeping if needed and decreasing screen time. After this initial 48-hour rest period, a gradual return to work, school and physical activity should be followed guided by a healthcare provider who understands the process.

There you have it – if more awareness and understanding is cultivated regarding this injury, many patients suffering from brain trauma might be in a better place not only because those closest to them will have more understanding but hopefully, medical providers will change their old school thought and approaches – something that is desperately needed.

Shocking New Pathways Into the Brain

When you think of the role of your tongue, you probably immediately think of its role in tasting, talking and swallowing. Did you know the tongue is directly connected to the brain? There is a hub of nerves at the tip of the tongue consisting of about 50-60 nerve branches.¹ Picture babies and children in their developing years using their mouths and tongues to explore everything. It is an important learning tool. Have you ever noticed a child coloring with his or her tongue sticking out? How about an athlete focusing in a game?

Researchers hypothesize various theories as to why deep thinking or focusing tasks can lead to engagement of the tongue. The first is something called motor overflow as the network within the brain for language overlaps with the network for fine motor activation of the hands. When the neurons fire for fine motor skills, they may overlap into neighboring tissue for language leading to the use of the mouth and tongue. A second theory is that this process is evolutionary as the hands were first involved in language and through time as early humans started using more complex tools, the hands became occupied leading to the dominant form of communication with the mouth and tongue.²

The tongue-brain connection has been established with such a rich nerve hub as mentioned. Because of this accessible highway to the brain, scientists have looked into ways of accessing the brain through the tongue. Researchers investigated and determined that shocking the tongue may improve brain rehabilitation and repair neural damage in patients with conditions such as multiple sclerosis (MS) and traumatic brain injury (TBI).

Huh? How could shocking the tongue help? The focus and mechanism of this treatment is brain neuroplasticity – the ability of the brain to make new connections and networks. Researchers believe that tongue shocks may be a direct pathway to forming new nerve connections, a necessary repair mechanism for the damaged brain now rampant with bad nerve connections. By shocking the tongue, impulses cruise along the highway from the tongue to the brain, leading to the release of neurotransmitters and the development of new brain pathways.

The healing power of this therapy is thought to come from the induction of neuroplasticity. A device called the Portable Neuromodulation Stimulator (PoNS) provides the electrical stimulation to the tongue. A study demonstrated significant changes in brain wave activity after just one 20-minute PoNS session as well as other findings consistent with neuroplasticity.³Just last year, the FDA approved marketing for this device for use in MS patients to improve gait.⁴

The effect of electrical stimulation of the tongue was assessed in MS patients in a 14-week study.⁵ The study used electrical stimulation in combination with intensive cognitive and physical rehabilitation targeting memory, balance and gait. Brain changes were also assessed in this study via functional MRI. The patients treated with tongue stimulation demonstrated neuroplasticity, greater cognitive improvement and twice the improvement in fluidity and balance compared to the control group. Another study supported these findings, showing significant improvements in balance, walking ability, fatigue and MS impact scores (a measurement of the psychological and physical impact of disease).⁶

This has become of great interest to the military for use in service members suffering from neurological diseases including the great percentage suffering from TBI. In a study using translingual neurostimulation plus physical therapy among patients with mild to moderate TBI, patients had significant improvements in sleep quality, balance, gait, and had a reduction in headaches and fall frequency.⁷In another study among mild to moderate TBI patients, there was demonstrated increased brain volume after treatment as well as improvement in balance, gait, movement and executive function.⁸

Many TBI patients, like myself, carry on to suffer from chronic tinnitus. Researchers found that electrostimulation to the tongue with a sound program using various frequencies of sound can reduce tinnitus for up to one year after the treatment!⁹

Electrical stimulation of the tongue holds great promise for many debilitating and disabling conditions. Aside from MS and TBI, this therapy is also being investigated for use in patients with stroke deficits, tinnitus, Parkinson’s and vision loss. Shocking the tongue may be a catalyst for neuroplasticity and re-training the brain.

1. https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC2955167/
2. https://www.livescience.com/why-stick-out-tongues-concentration
3. https://jneuroengrehab.biomedcentral.com/articles/10.1186/s12984-019-0538-4
4. https://www.fda.gov/news-events/press-announcements/fda-authorizes-marketing-device-improve-gait-multiple-sclerosis-patients
5. https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4017705/
6. https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5466147/
7. https://onlinelibrary.wiley.com/doi/10.1111/ner.13159
8. https://www.emjreviews.com/radiology/article/translingual-neural-stimulation-with-the-portable-neuromodulation-stimulator-pons-induces-structural-changes-leading-to-functional-recovery-in-patients-with-mild-to-moderate-traumatic-brain-in/
9. https://www.science.org/content/article/electric-shocks-tongue-can-quiet-chronic-ringing-ears

The Light That Peeks Through

Light is so fascinating and mesmerizing to me and has become so much more meaningful and important to me during this recovery. Certain wavelengths of light make me feel worse while others seem to make me feel better. From my time spent in the Light Portal, to my new Brainwear bending light to manipulate my brain, I am fascinated by it.

Have you ever noticed how beautiful it is when you enter a room and the light peeks through the window in just a way to form a beautiful pattern projected across the floor or onto a wall, or it hits a hanging photo at just the right angle and the bending of light creates the rainbow? It is nature’s masterpiece.

A post-it note on my wall reads, “I am healing.” I focus on my breathing and repeat this affirmation to myself every day. Having experienced exceptional burn out and frustration recently, I sat in front of my post-it note to start repeating this affirmation. This post-it serves as a reminder to take time to myself to practice self-love and be kind to myself which has been a work in progress. I was experiencing many emotions with frustration being one of the most prominent as I repeated the now familiar words.

As I was staring at the post-it note, the sun made a gentle entrance through my window and the light projected perfectly onto it. It warmed my soul and brought a smile to my face. I couldn’t help but laugh.

This particular instance is symbolic to me. In the midst of dark times, what has kept me going are the little glimmers of light coming through. It’s interesting because the more I become aware and in the moment, the more glimmers seem to come through. It becomes easier to pick up on them. It’s as if you start to attract it, but in reality, it was there all along waiting to be noticed.

I believe you would agree with me that the little hints of goodness sprinkled into the world keep you going. This could be one single person’s simple act of kindness on a day where you really needed to experience goodness.

I like to think of the little hints of goodness as that little light peeking through which can make us stop and think of beauty and that’s something that we need to keep going when it is difficult to find it within ourselves. In that very moment, I was reminded of beauty and light. It is all around us.

It’s easy to get off track when experiencing daily pain, stress, trauma, or anything troubling for a stretch of time and it can feel so dark. But at the end of the day, if you reflect on it, there was at least one little hint of light peeking through and that can turn out to be so uplifting. Just like when a bonfire is about to burn out and it begins to feel so cold, when given a little support, it is reignited and provides warmth. I have so much gratitude for so many people I have come across in my life at one point or another who served and serve as little glimmers of light.

Here’s to the little bit of light peeking through – a reminder of beauty, warmth, hope. Notice it, embrace it, and reignite. Something that seems so small and irrelevant may just be the thing that keeps someone going.

In many ways, we all radiate light and it might just be the most meaningful thing to someone, somewhere.

Surgery, General Anesthesia and the Vulnerable Concussed Brain

Up to this point, we have learned of the incredible evolution of anesthesia since its advent, allowing millions of life-saving, painless, sterile, successful surgeries to take place every day. We have also learned of careful considerations in vulnerable populations. This last blog post will top off the topic of surgery in the brain injured patient.

Surgery can be lifesaving and can also vastly improve quality of life. Over the past decade, however, growing evidence has linked surgery, such as cardiac and orthopedic procedures, to brain pathology similar to that of other neurologic diseases in which the brain is the primary target of injury.
Nature Immunology¹

Are the effects of general anesthesia on the brain entirely reversible?

The question of whether the brain reverts entirely to the state it was in preoperatively once the anesthetic agent is removed, remains. Mounting evidence suggests that the effects may be longer lasting than once thought or anticipated due to long-term changes within the brain. Due to the mechanism of these agents acting on receptor targets throughout the brain, the compensating capacity in vulnerable populations is reduced. These populations include developing children and older adults, though focus is emerging towards another group in this population of vulnerability being those with brain injury of any severity as well as other brain diagnoses.

This remains unanswered though some studies suggest the negative effects in attention and memory can languish for days, months or even years.

The stress of surgery: Can we separate the potential long-term effects of general anesthesia from the stress of surgery itself?

Aside from the anesthesia, consider all the different factors that play into surgery. Consider the bright lights in a light-sensitive patient, the various noises of beeping and monitors in a noise-sensitive patient, the blood sugar fluctuations from overnight fasting which may already be erratic, the anxiety and stress associated with the procedure, and the inflammation produced.

There is no doubt that this type of environment could be very triggering to a concussed or post-concussed patient already struggling to be present in such environments. It’s important to note that while this environment can be very triggering to a brain injured patient, if it were solely the culprit those symptoms would likely not languish for months after the exposure. Once removed from the stimuli, the brain should calm depending on the individual within days to a few weeks.

Does the surgical site play a role?

This question emerged from my personal experience following my concussion. It got me thinking that maybe a huge component of my negative outcome after shoulder labrum repair during the early days of my TBI recovery was at least partially a result of the proximity to the neck leading to a favoring of the shoulder and thus further imbalance in the musculature of the neck and surrounding structures.

The surgical site may certainly play a role although there is no clarifying answer on this. In theory, a surgery to the knee or foot may have a more favorable outcome in a concussed patient versus a surgery of the upper body. It’s important to remember that every concussion has neck involvement but every injury to the neck is not accompanied by a concussion. Unfortunately, the neck is often overlooked and left untreated in a good majority of concussed patients. This in combination with a surgical procedure in close proximity may exacerbate the already prevalent issue, though this remains theoretical at this point.

Inflammation and the immune response after surgery

Any trauma to the body produces inflammation, and surgery is a controlled trauma to the body. The link between cognitive impairment from systemic inflammation is not well understood. There is now mounting evidence that the inflammatory cascade can also trigger the brain’s innate immune system leading to long-term cognitive impairment and the development or worsening of other symptoms.

A review article¹ addresses neuroinflammation after surgery. The cellular damage that is a result of surgery activates immune cells that are important in restoring homeostasis, but this activation leads to systemic inflammation. If this immune function is impaired or dysregulated, it can drive perioperative neurocognitive disorders (PNDs).

…seemingly harmless interventions like a common surgery to repair a broken limb can overwhelm the immune system and become the driver of further complications such as delirium and other perioperative neurocognitive disorders.
Nature Immunology¹

Also triggered by surgical trauma is the coagulation system. This is also necessary for body homeostasis but on the other hand can be a driving force for cognitive deficits. This process could go haywire if fibrinogen, a protein necessary for clotting, enters the brain through the blood brain barrier (BBB). Fibrinogen deposition was found in the brain’s hippocampus just 24 hours after orthopedic surgery. This very deposition has been implicated in traumatic brain injury, Alzheimer’s and MS.

The BBB protects and regulates what goes in and out of the brain. A consideration is that the BBB is often damaged after brain trauma leaving it exceptionally vulnerable. This may be an important mechanism for systemic inflammation to cause inflammation within the brain. Preclinical models demonstrated surgery and anesthesia can lead to increased permeability of the BBB, allowing inflammatory cells into the hippocampus which plays a huge role in learning and memory. A good majority of TBI patients already have a leaky BBB so this combination may be bad news.

Researchers discovered the two proteins associated with Alzheimer’s went from normal levels pre-surgery to increased levels associated with mild cognitive impairment six months post-surgery in human patients. This has also been seen in other studies to increase just 48 hours post-surgery.² A separate study³ looking at the immune response before and after surgery showed interesting results. The researchers used brain PET scans to image this response and found a significant decrease in brain glial activity early post-operatively and also months after. This study demonstrates an association between the immune response and cognitive impairment. The more dysregulated the immune response, the worse the cognitive impairment.

“The Immune Response of the Human Brain to Abdominal Surgery”³

Certain anesthetics may strengthen areas in the brain

Researchers have looked into whether anesthetics can help protect or benefit the brain as well. Ketamine has been used for its anti-depressant effects and may strengthen neural connections and reset the brain’s award and disappointment centers. It may reduce post-operative cognitive impairment and is theorized it does this by modifying the immune response. Other anesthetics such as propofol and isoflurane in certain doses have also been used as antidepressant therapy.

Bottom line: The negative effects from surgery are likely multifactorial

Is general anesthesia the culprit for decline in cognition and other symptoms after surgery? Is it the inflammation produced? Is this due to a leaky blood brain barrier or dysregulated immune response? Is it a combination of all of the above?

While many questions remain unanswered, it seems most plausible to be a combination of all of the above – systemic inflammation, the hospital setting, an already vulnerable brain with pre-existing cognitive deficiencies, leaky blood brain barrier, dysfunctional immune response. Elective surgery should be carefully considered in the concussed and post-concussed patient and the risks and benefits should be discussed thoroughly before proceeding. Careful consideration should also be placed on anesthesia and a conversation with the anesthesiologist can be helpful.

How can we better protect the brain when going under the knife?

Support the immune system
Optimize nutrition
Protect the blood brain barrier
- Curcumin, resveratrol, vitamin D, B vitamins, magnesium, omega 3
Discuss the possibility of using EEG to fine-tune anesthesia dosing with your anesthesiologist
Discuss the risks and benefits of the surgery with your physician and surgeon before proceeding
Discuss the established intra-operative goals for TBI patients with your surgeon

If time slowly steals our memories, let us at least ensure that interventions like surgery do not accelerate the natural course of time, especially on an already vulnerable brain
Nature Immunology¹

1. https://www.nature.com/articles/s41590-020-00812-1
2. https://www.pbs.org/wgbh/nova/article/pocd/
3. https://escholarship.org/content/qt1dt4532r/qt1dt4532r.pdf?t=p0hi0b

Travels to Chicago: Stage 2 Brainwear

As I recently faced a significant health road block being Covid, I was unable to post or invest any energy into my brain injury recovery. I have faced many road blocks and setbacks over the course of this recovery but the most recent one turned out to grant me a new perspective. As much as I try to be mindful and grateful for the many seemingly little things on any given day, I am reminded that we truly cannot think of everything. I am reminded that there is much to be grateful for and so much beauty around us. I am happy to report I am finally getting back on track and I am excited.

With that said, there are a few blog posts that are long overdue. The following post details my return trip to Chicago to the Mind Eye Institute for re-evaluation that took place in November. With the help of my Mom, I was able to make it a day trip for the appointment. It was a very long, exhausting and painful day but one that ended on an sweet note…stay tuned!

At the time of my re-evaluation, I had worn my Stage 1 glasses for 12 weeks. By that point I had determined these were glasses from hell. I also determined that these were glasses from heaven or a far-off place that produces miracles. To say my Stage 1 glasses had already had a profound impact on my life is an understatement.

Some things on testing at the appointment got better and some things got worse. While some things worsened, I would say overall I felt like I was where I should be. I am grateful for the changes and am looking forward to more positive changes.

I was prescribed a completely new pair of glasses as the Stage 1 glasses set the foundation and my brain was ready for the next level. I was prescribed “Stage 2” glasses that would require a similar transition as the first. The transition into my Stage 2 glasses was supposed to begin early December but unfortunately due to Covid, I was unable to begin the transition and still have yet to start. Also very unfortunately, I have not worn any glasses at all since November as I outgrew Stage 1 and they caused debilitating symptoms so I had to stop wearing them as a result. While I have lost some of the improvements made from Stage 1 and many of the unpleasant symptoms have returned full force, some have stuck. To me, that is something to celebrate.

As difficult as Stage 1 was, I welcome the challenge of Stage 2. The start date is not yet determined. I wasn’t completely comfortable in my Stage 1 glasses though was finally able to wear them all day! It took six weeks to build up my wear time from one second with my eyes closed. Stage 2 will likely be a similar experience and I am anticipating the first 4-6 weeks to be the hardest and most painful.

Now back to the sweet note the trip ended on. After these long, strenuous appointments, my brain usually likes some carbs or sugar which is a rare indulgence for me. As I was too exhausted to even speak or walk and was developing a bad headache, I somehow mustered enough energy to see what this little natural bodega near our gate had to offer. This unexpected find at the airport felt like a reward. I managed to find a bar of chocolate suitable to my dietary restrictions called Vgan Milk Chocolate that my Mom and I shared. It is amazing and almost as good as the chocolate my sister brings us home from Switzerland! It was like I had found the golden ticket. This bar of chocolate could have even gotten Grandpa Joe to jump out of the bed after 20 years! If you don’t get this reference, please go watch Willy Wonka & the Chocolate Factory.

In future posts I will discuss all that I experienced with my Stage 1 glasses and as I progress along with Stage 2, I will share that experience as well. This detailing takes a significant amount of time and energy as it is a lot to condense. Hopefully the changes experienced from Stage 2 will be even more profound than Stage 1. In my next blog post, I will finally share Part II of my blog post series on surgery and anesthesia use in brain injury patients.

Surgery Considerations for the Concussed Patient: Is the Brain At Stake?

The advent of general anesthesia completely altered the course of surgery from a barbaric, hazardous, Frankenstein-like horror to a humane and often life-saving intervention. Thanks to general anesthesia, the trauma associated with the surgery to both the medical staff and patients due to horrific screams, pain, terror and death was eliminated.

Some of the first substances attempted to minimize pain associated with surgery were wine and opium. For hundreds of years, various herbs were used. Ether was first synthesized from alcohol in 1540 followed by the discovery of nitrous oxide (laughing gas) in 1722. Both ether and laughing gas were used solely for entertainment purposes and ether follies became a popular gathering. People would gather, sniff ether together and get high. It wasn’t until the mid-19^th century when these entertaining intoxicants were considered for medical use.

William Morton, dentist, was experimenting ways in which he could perform dental procedures pain-free on his patients and first considered laughing gas. At one of the ether follies, Harvard chemist, Charles Jackson, witnessed a man who sustained a significant leg injury while high on ether and he did not show any evidence of pain. He advised Morton to use ether for his procedures.

Morton proceeded with the use of ether in several dental procedures. He then got in contact with surgeon, John Warren, who gave him permission to anesthetize his patient with ether. Together, they proceeded with the first public demonstration of surgery using ether-induced general anesthesia on October 16, 1846, now called Ether Day. In just a few short months following, the world of surgery took a drastic change as ether-induced anesthesia was used in surgeries across the globe.¹ Today, we have various anesthetic agents to choose from for surgery.

As a topic that continues to be brought to light, I felt it best to address it again. Many concussed patients might find themselves in a similar situation – deciding to proceed with a surgery or not. The risks in relation to brain injury recovery and the potential for worsening preoperative symptoms and even causing a prolonging of concussion symptoms are not typically discussed at length prior to proceeding.

Thankfully, with the evolution from literally no sedation or anesthesia, to wine and opium, to laughing gas and ether follies, and now to a wide variety of anesthetic agents, we can undergo surgery without the unspeakable and unfathomable agony experienced in the past. Only, underneath the surface, long-lasting lingering effects of general anesthesia may still continue to haunt patients. With the evidence currently available, can we really blame anesthesia for such outcomes?

I have connected with several people who wanted to gain more insight and discuss moving forward with a surgery during their own respective brain injury recoveries. Faced again with a similar predicament recently, I was reminded of my blog post entailing an elective surgery that occurred within three months of my TBI. While awareness has heightened regarding this very topic, more research is required. I reviewed some of the literature discussed in my previous blog post which will be re-visited but also pose new questions and concerns regarding surgical outcomes in the concussed patient.

I was astounded by the percentage of concussed patients that are faced with this same predicament. Within one year of concussion, typically in the first month, about 8-12% of these patients will present for surgery.²Another study showed 5% of recently concussed patients underwent elective surgeries unrelated to the concussion within one week of injury.³ The significant percentage of concussed patients faced with the prospect of going under the knife could simply be due to the increased risk of musculoskeletal injury they face due to changes in attention, cognition, hand eye coordination, reaction time, etc. In reality, these percentages may be higher due to the fact that there are no concussion screening tests implemented preoperatively. With such a prevalence of concussion patients presenting for surgery, the outcomes should be considered.

There are some questions that come to mind when considering surgery during TBI recovery:

How will surgery itself affect the brain and specifically how will it affect brain recovery?
How will general anesthesia affect the brain and specifically how will it affect brain recovery?
How likely is it that surgery will worsen preoperative concussion symptoms?
Are the effects of general anesthesia on the brain entirely reversible?
How will the inflammation produced from surgery affect the brain?
How will surgery recovery in combination with concussion recovery affect quality of life?
Does the specific surgical site play a part in recovery of the brain?

Here’s what we do know:

Surgery itself is stressful and multifactorial!
General anesthesia can negatively affect the brain.
All surgeries and trauma to any part of the body produces inflammation.
Inflammation can negatively affect the brain.
The general consensus from surveyed anesthesiologists is that elective surgery should be postponed until patient concussion symptoms are stable or have completely abated. Keep in mind, the brain continues to heal long after symptoms disappear. Symptom disappearance does NOT mean the brain is fully healed.

Advice to the concussed patient considering or undergoing surgery:

My best advice to any patient with brain trauma who is in a predicament because they are recommended surgery during brain injury recovery and to those who are unable to postpone the surgery is to read the science and literature that is available. It is best to empower yourself with this information and bring it to your provider for discussion. Consider your current quality of life and think about how the recovery of another part of the body would affect your quality of life which includes your mental health. Consider your current symptoms and the risk involved with worsening of those very symptoms postoperatively.

Discuss these concerns with your surgeon and also ask to discuss these concerns with the anesthesiologist that will be in the surgery with you. There are now intraoperative goals specifically for TBI patients. As this is still an issue on the rise, it is wise to discuss these established goals⁵ with both your surgeon but more importantly, your anesthesiologist:

Cerebral blood flow autoregulation is likely impaired after TBI so even mild hypotension should be avoided to reduce the risk of cerebral hypoperfusion
Maintenance of mean arterial pressure at the patient’s baseline value or higher is therefore appropriate
Hypovolemia should be treated using isotonic normal saline rather than hypotonic fluids, which could cause cerebral edema, or colloids, which have been associated with poor outcomes in TBI
Since hypocarbia (reduced carbon dioxide in the blood) in the face of impaired pressure autoregulation may lead to cerebral ischemia, mechanical ventilation should be adjusted to maintain normocarbia during surgery

In my next post, I will discuss the specific questions posed in this post in detail and review studies available on this front. Is general anesthesia the culprit or are the compounding factors surrounding surgery itself to blame for poor outcomes and worsening of preoperative symptoms?

Sources

1. Ether day: an intriguing history
2. Is a Concussed Brain a Vulnerable Brain? Anesthesia after Concussion
3. Concussion in the Perioperative Period: A Common Condition Requiring More Investigation
4. Anesthesia for the patient with a recently diagnosed concussion: think about the brain!

Brainwear: A Game-Changer for Persistent Concussion Symptoms?

There has been quiet in writing the past few months, though my recovery has been far from quiet. The reserves I was running on ran out, giving me a new meaning to the words “burn out.” I was thinking about the various times I experienced burn out while working many long shifts in the emergency department and none of those times even remotely compared to this. Let’s just say the ebb and flow of this journey to healing has been a test of limits.

Since I last wrote, I traveled to the Mind Eye Institute in Chicago to see world-renowned optometrist and neuroscientist, Dr. Zelinsky. I am grateful to have had my sister there with me. We had some very funny and painful experiences. Laughter really is wonderful medicine. I love you, Quinn!

The trip was a quick 24-hour turnaround, though it felt like months. The day of the appointment was long and grueling. We walked from our hotel about a mile to the practice. We arrived early, beating the whole staff there and anxiously waited on a stoop outside. I sat there with many nerves and thought about how important this day would possibly become. My heart started pounding as we made our way to enter the office for the first time.

The appointment started with testing performed by a vision therapist, fatiguing me almost instantly. Challenging, painful, frustrating, exhausting, are just a few words to describe it. There were many breaks taken in pure darkness in an attempt to calm my nervous system. This initial testing lasted about two hours. We were then taken to another examination room where we waited to see Dr. Zelinsky. She walked into the room and meant pure business. We got to work, with even more testing. This is where it became quite mind blowing.

Dr. Zelinsky first showed me an object, a die attached to the end of a stick, and advised me to then close my eyes and reach my finger out and touch it. I was able to do that fairly well but then we moved onto Dr. Zelinsky’s patented Z-Bell test, which is used to assess and demonstrate the eye-ear connection or how visual processing is integrated with listening. The Z-Bell test is now used around the globe and recognized by scientists and eye experts. Adding the hearing component in addition to the visual component threw me for a spin. During my recovery, I have had my vision and hearing assessed separately and independent of each other countless times. This is the first time hearing and eyesight were fully assessed together to see if they were integrated and working together properly.

A person can have sharp hearing and 20/20 central eyesight, but if the senses are not integrated and the brain is impaired, then the entire neurological system becomes like an orchestra without a conductor. Each musician may be quite talented with his/her learned instrument, but they must play in sync. If they are moving through the composition at different speeds, the result is noise – not music.
Mind Eye Institute

From this test, Dr. Zelinsky was able to identify underlying issues within the circuitry of my brain and quickly showed how we could make it better. The Z-Bell test was very challenging for me and I had started to wonder if anyone could perform it with ease and accuracy. So, Dr. Zelinsky demonstrated the test on my sister who did perform it accurately and with ease. I was amazed to see this in comparison to my personal performance.

With my eyes closed, Dr. Zelinsky rang a small bell in front of me in space. The bell added the hearing component to the testing. I was instructed to reach my finger out and touch the bell where I perceived it to be in space. I tried over and over to touch the bell, though kept missing by a large margin. My sister demonstrated what I looked like, which sort of resembled the arm movements of a zombie, seemingly aimless and random. With my arms flopping in space, I thought, alright you’ll be able to identify where the bell is at the next time and hit it. But this mind over matter mentality did not prove to be the case as I have learned repeatedly throughout this recovery.

The test continued as Dr. Zelinsky put various lenses and filters over my shut eyes, ringing the bell with each lens. How could these lenses have any effect with my eyes closed and allow me to locate the bell? We cycled through various lenses and filters, attempting to find the right combination. Yellow…no change. Blue…no change. Green…there we go! I almost immediately hit the bell with my finger – a direct hit.

It was a moment I won’t forget because I won’t forget the feeling associated with it. It was that whole body electrifying shiver you feel when something amazing happens, when you experience an overwhelming amount of joy, when you score that game-winning goal or when your team wins a championship.

When the right combination of lenses and filters were discovered, altering the way the light reached and dispersed across the retina, I was able to reach out with my eyes closed and touch the bell ringing in the space before me. This was and is so fascinating to me – that changes in light that penetrate closed eyelids can impact an individual’s movement, balance, attention to sound and spatial awareness. And fascinating that just by adding the sound component to the test with the bell produced such a profound difficulty.

In that moment, I opened my eyes, looked at my sister and we both said, “That is magical!” Dr. Zelinsky quickly responded, “It’s not magical; it’s mathemagical!” And that it is. There is so much science put into this technology and over two decades of research. I am very appreciative of her efforts and drive to continue this research stemming way back to the ‘90s when she was looked at as crazy by some doctors she presented this technology to. These were the same doctors who said the eyes and the ears are not connected. Where would we be without pioneers like this who persisted even though it was against the grain?

The eyes are a crucial gateway to the brain, and the retina itself consists of brain tissue. The very simplified science behind the Brainwear (eyeglasses) involves manipulating and altering the way in which light hits the photoreceptors within the retina, leading to changes in the brain’s interpretation and reaction to the environment. By stimulating peripheral areas of the retina, specific pathways in the brain are stimulated. The end goal is new and improved pathways in the brain and a synchronized internal and external environment.

Based on this testing, specialized eyeglasses (Brainwear) were made using just the right combination of lenses and filters. It has been about three weeks since I started transitioning into my new Brainwear. When we think of glasses, we think of how they will magnify words or clear long-distance vision and fine tune central vision. These glasses are not designed to do that. They will not make eyesight any clearer. They are intended to integrate the communication between the eyes and the ears, to balance central and peripheral eyesight, visual processing and positively impact whole body chemistry.

It’s a ‘new age’ in eye testing. The eyeglass prescriptions developed through the Z-Bell Test have been called nothing short of ‘amazing,’ even ‘miraculous’ by patients, because they have brought relief for a range of symptoms, including headaches, dizziness, difficulty reading, learning and behavioral problems, attention deficit disorders, and anxiety. Many patients now being treated successfully suffered for years with the effects of eye-ear imbalances, brain injuries and other neurological issues, because they were told by different health professionals that their eyesight and hearing tested as normal. Unlike 20th century eyeglasses that merely correct central eyesight, Z-Bell-prescribed glasses are therapeutic, intended to bring a person’s inside and outside environments back into synchronization. The common refrain of patients wearing the Z-Bell-prescribed glasses is: ‘I feel like myself again. I feel normal.’
Mind Eye Institute

I didn’t realize that transitioning into these glasses could be so challenging. When I first opened the box containing my new glasses, I was excited to put them on. Only when I put them on, did I immediately feel off and funny. I developed a severe headache and eye pain instantly with associated nausea and the feeling of being out of sorts and off balance. As of today, I can only tolerate wearing them for about twenty seconds, five times a day with my eyes closed. Wearing them with my eyes closed is way more tolerable than with them open but still doing the trick, which is so fascinating to me.

In November, I will return to Chicago for another evaluation and adjustment of the lenses and treatment protocol. The existing lenses may need to be adjusted for new lenses at each visit depending on my progress. Until then, I continue my transition into my glasses and hope to add one second each day! The first four weeks are expected to be the most difficult with a significant amount of agony and discomfort.

This was yet another humbling experience to say the least and one that will hopefully be another tool to get me my life back. I now have two pivotal, brilliant doctors in my corner and I feel blessed to have both Dr. Donaldson and Dr. Zelinsky working hard to piece back together my broken brain.

I have many research articles on the science behind Brainwear stacked up and I very slowly plan on getting through them and will describe the science fully in a future blog post. Will Brainwear be a game-changer for my recovery? Stay tuned. I can’t wait to find out!

A Yearning for the Sound of Silence: Noise Sensitivity After Brain Injury

creative shot of human ears on dark background

The dog is barking at the excitement of the visitors. The front door slams. The kids talk to each other in their naturally higher pitched voices – something that would normally be sweet but unfortunately there is nothing sweet about this. The screaming starts. Now there’s crying. “It’s so loud in here,” I say out loud. I don’t know if it was louder than a whisper to myself but even the sound of my own voice hurts my head. It’s hard to discern how loud I’m talking when there are so many noises in the environment on top of the ringing in my ears.

I walk up to my room, close the bedroom door and turn my white noise machine on, hoping it will somehow cancel out some of the noise. I feel threatened by the noise but in my rational mind I think about how silly this is. The noise machine isn’t doing anything so I go into my closet and close the door. Maybe this will be a safe space. The ringing becomes so loud. I can hear my heartbeat – I picture the ventricles of my heart filling up with blood and pumping it out of the vessels with every loud thump in my head.

There is a vent on the wall in my closet. The air conditioning turns on; I can hear it flowing through the vents so I can pinpoint the exact flow of it just like the flow of my blood with each heartbeat. Systole. Here it comes rushing out next to me through the closet vent, blowing directly onto my body. I’m shivering because I am so cold. The vents make a crinkling and crunching sound as it passes through the house, eventually making its way to my vent where it whooshes out in a fury.

A new sound emerges almost every second it seems, startling me, making my body jolt. The front door slams every five minutes. Even if I can predict when the slamming will occur, it startles me. The voices – the many voices – penetrate directly into my brain. Kids talking normally and kids screaming. Adults talking in normal voices but it sounds like they are shouting. I hear laughter. This should be joyous and happy to hear laughter but instead, it is excruciating. Voices with the inflection of excitement penetrate further. Why are the vents crinkling so much? My noise machine is going in my bedroom but it isn’t actually doing anything except using up electricity. All rational thought has left me.

I’m lying on my closet floor, tears streaming down my face as I hold my ears. My brain is in rebellion as I don’t even consciously make the connection that I am staring with eyes wide open at the wall, not blinking at all. Meanwhile, my ears are zoning into the madness, picking up every little sound. I made a little pillow for my head out of a yoga towel that was laying on the floor in the closet. I am so overwhelmed that attempting to add some sort of comfort is not on my radar. A pillow and a blanket would’ve been nice.

How do I make it stop? I want to rip my ears off. I’m sweating. I must be in fight or flight, and I so desperately want to fly away to a place in silence. I wonder what silence feels like anymore. Every additional sound is hammering my brain. I attempt to meditate and focus on my breathing but every second I am startled and distracted by a noise. The front door slams. A car drives by outside as I hear its engine rev. The deep voices and higher voices in conversation penetrate the walls. It seems as though the walls are made of paper. The ear plugs make the ringing worse, causing me to feel even more insane. Why can’t I just flip the switch to off? The ringing is so intense – it’s system overload.

I want to be normal and want to be a part of it but I can’t. I’m alone again because I can’t handle it and I’m reminded that I’m still not me. And I’m still not like everyone else. Never in my life have I wanted to be so much like everyone else more than I do right now. I’m drowning in noise. I turn to my usual solace – music. But the music mixed with everything else makes it worse so I have to turn it off. The combination of sounds is just too much. How many movements are left in this horrendous, excruciating symphony?

I’m shaking. I’m anxious. I wish for just one second the noise would stop. The air conditioning turned off. Oh, now I hear my noise machine. Why is the ringing getting louder? Someone must be tapping their foot on the wall or on the counter because I hear a repetitive tapping over and over. A pantry door opens. It is so squeaky and feels like someone must be opening the side of my skull like a door, peering into the mess in my brain.

Dishes are being stacked in the pantry. Oh my god, that hurts. It’s like the dishes are being stacked directly onto my brain. My brain is reverberating. I’m faced with the same question I’ve faced in many situations past – can anyone hear this? I feel insane by it because pre-injury I wouldn’t have noticed the many little sounds I’m hearing now or be affected by such normal and innocent sounds. Of course, no one’s noticing the noise. Except me.

Someone’s blasting music in their car – I wonder if it’s a teen with a sub-woofer because I can hear and feel the bass thumping outside the house on the street. The air conditioning is coming back on…only a matter of seconds before the crunching of the vent starts. There it is. I know the burst of freezing cold air on my body is impending and it will bring goosebumps and shivering. But I can’t help but continue to lie here paralyzed.

I picture the air movement. It takes a turn through the vent. It’s coming up. The gush of freezing air has arrived, blowing directly onto my cold, limp body. I just figured it out – it sounds identical to the rain pounding the gutters and windowpane in a really bad storm. That was always something I loved about storms but not anymore and this is a storm in my brain that I don’t want to be a part of.

Having no concept of time, I realize I have been lying on my closet floor for two and a half hours. I wish there were a volume dial for the sounds of the world. For just a moment, I wish I could turn it down and put the world on stop.

I miss the sound of silence.