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.

Who Doesn’t Love a Good Comeback Story?

I often feel like an underdog in my recovery, grinding and fighting through adversity for any sort of progress. The thing about underdog stories is that once they reach that big moment of victory, all of the raw emotion and passion is witnessed – a culmination of the pain, hard work, grind, failures, setbacks and incremental progress to get to that point. It makes that moment so much sweeter.

While exceptionally challenging to summarize, this video is the making of the raw failures, successes and everything in between the past 3.5 years of my traumatic brain injury recovery. While I still have a long road ahead, I am determined to make my comeback and experience the sweetest underdog victory.

Thank you to all who have supported and rooted for me thus far. The encouragement and support means the world to me.

Who doesn’t love a good comeback story?

Advocacy After Brain Injury

I have received questions about what advocacy looks like for loved ones and for those suffering from the effects of traumatic brain injury (TBI). This is incredibly important, as I’ve learned, following TBI. My needs increased and I needed help in ways I couldn’t possibly imagine. I struggled with communicating these needs to my loved ones, typically out of a feeling of guilt or shame. Accepting help can be hard. The goal of this blog is to help other TBI sufferers come up with strategies for better self-advocacy and to also help enlighten the loved ones of those suffering this seemingly invisible injury to better understand and also provide strategies to advocate for them in their respective recoveries.

It’s difficult when you’ve gone from being fully independent to being dependent on others. It can be so exceptionally draining to explain why you may need help with something when you appear to be “fine.” I’ve learned this is so important, because the misunderstanding that already exists will only continue if you aren’t honest about your experience. It’s hard when these needs may not be visible to the eye. It’s interesting because I experienced so much more understanding, empathy, concern and compassion after my shoulder surgery when I was in a sling or after my pneumothorax when I had a chest tube in place. Without physical or visual evidence of pain or suffering, many people cannot understand or react with that same empathy and compassion. This is one of the most difficult aspects of this recovery. This can lead to the destruction of self-advocacy, among many other things.

One of the most important things I’ve learned is that communication is often the most important part of self-advocacy. Many TBI patients, such as myself, had felt like they had lost their voice in the process. This stems from misunderstanding, judgment, misperceptions and dismissal.

I was at an appointment last year at the concussion “specialist,” and was explaining to the doctor the many things wrong with the procedure and management of TBI recovery at the concussion center. The doctor’s response to me was, “Keep speaking up. You need to be an advocate for the other patients here.” I didn’t think too much of it in the moment but then it hit me later. While I do want to be an advocate for other patients suffering similarly, isn’t that the doctor’s job to advocate for his or her patient?

This process and any chronic disease process is exhausting, painful and draining. The experiences I endured with many providers in this three-and-a-half-year stretch of time did leave me feeling helpless, hopeless and like I was alone, fending for myself. You begin to go into self-preservation mode and lose your ability to fight for what you deserve, for what is right, for proper care. You essentially lose your voice because at times it feels like no one is truly hearing you.

Thankfully, I have knowledge in the medical field. This may not be the case for many patients who have sustained TBI. I’ve had conversations with close friends about how this has helped me tremendously throughout my recovery. It has led me to opportunities for treatment, to question and research what else is out there for me rather than accepting what was given to me and accepting there was nothing else for me out there to try. This is an edge I have had that unfortunately, many do not. If you or your loved one have been told there’s nothing else to try, there is always something and someone else to see.

Communication is absolutely essential during TBI recovery. There had been times where I neglected my own needs to keep plans I made with family and friends. And there were times I pushed myself too far just to “fit in” with humans as I felt like I had lost my humanness at the impact of injury which led to major setbacks. There was guilt in that. Questions come into your mind of how you will be perceived if you speak up about how a simple task is strenuous and difficult for you or that it wrecked you for a week straight. The bottom line is, most would have understood if I were honest about why I couldn’t keep those plans or make them. I say most because there are still many who do not understand, even those close to you who you explain your experience to repeatedly.

This has unfortunately happened during my recovery and seems to be quite common for many others. It seems to hurt more when those who don’t understand are close to you. This requires energy that TBI patients don’t have left in their reserves to persistently attempt to describe and explain the experience over and over again to be met with skepticism. You start to question how others perceive you and it produces stress, anxiety and the feeling again like maybe it really isn’t worth it to speak up. It adds to the feeling of isolation. At the end of the day, communication is always worth it, though not easy. When you feel like you have lost your voice, that is when you lean on someone close to you who does understand and lifts you up.

If you are a loved one of a TBI sufferer, there are many ways in which you can help advocate for them. It can be as simple as offering a ride to an appointment, to cook a meal, to go into an appointment with them, stepping up for them when they are too reluctant or anxious to speak up. I have learned many important lessons on advocacy throughout this grueling recovery, and much I am still learning and working on. I am still trying to gain my voice back and it is uncomfortable! I deeply hope this will be helpful for TBI sufferers and will offer more understanding for those caring for them.

1. Self-advocacy is putting your health first. This involves saying no. Turning down plans or opting out of events is not selfish and something many TBI sufferers feel guilty or bad about. And trust me, if you are upset they are backing out, they are more likely than not to be more upset than you because there is such a deep desire to get back to some sort of normalcy.

2. You can gain knowledge for your loved one suffering from TBI by listening to podcasts, reading articles or books, reaching out to others for treatment leads. Showing them you want to understand better may be the most supportive and meaningful thing you can do. My most helpful treatments thus far have all been found on my own through research and podcasts except for one suggested by family.

3. Have someone go to appointments with you and have them take notes. You could also ask the doctor if it’s okay if you record the visit. Memory and attention is often affected and the patient may not remember a lot of what was said in the appointment leading to confusion, stress and anxiety later.

4. Write down questions before appointments and take them with you. Something that has been helpful for me is making a list of questions and concerns in my notepad that need to be addressed.

5. Always ask questions at appointments. How might this new treatment affect me? What are the side effects? How could this help me? Could this result in a setback? Many people may be willing to go head first into a treatment out of desperation only to experience worsening symptoms or a huge setback. This happened to me numerous times. Pause and research before proceeding with a new intervention. This may be difficult to do for a TBI sufferer which leads to the next point.

6. Have someone at appointments to speak up and advocate for you. Seeing many dismissive providers led me to lose my voice. I stopped speaking up for myself at appointments. This is a common experience for TBI sufferers. If this becomes difficult for you, ask someone to come to the appointment who feels confident they can advocate and speak up for you.

7. I presented many different treatment options which my concussion specialist either shut down immediately or wasn’t willing to listen to. This close-minded reaction deferred me from pursuing them. When I finally did pursue them on my own, they helped me. If you found a potential intervention and have a good feeling about it, go after it.

8. It is your right to decline treatments that you do not feel comfortable with. This does not mean you do not want to get better. I have unfortunately experienced many providers who viewed me this way when I decided to start declining the 20+ different pharmaceutical medications attempted that worsened my symptoms and wrecked my system further.

9. Ask for help planning and organizing medical bills and other expenses. It may come to a point where managing finances is too stressful for you to handle on your own. Asking someone to take over can reduce this one stressful burden of the recovery.

10. Many TBI patients have limited driving ability or are unable to drive. Offering rides can ease some of the stress burden for the TBI sufferer. A big thank you from the bottom of my heart to all of my drivers – you know who you are!

11. If attending a TBI support group, offer to go with your loved one for support in the process. I found that having someone with me at a support group was comforting and helpful.

12. Self-advocacy means being kind to yourself. This looks like slowing down, speaking up and listening to what your body needs. I started competing with myself in order to get better faster only to lead to setbacks and the prolongation of my recovery. This is a common experience I have learned from others I have connected with. Being kind to myself is a lesson that I have learned and re-learned throughout this recovery and is of critical importance to healing.

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

Breaking Out of the Chronic Migraine Prison

thunderstorm with glimmering lightnings over ocean

I never know where I’ll be or what I’m doing when it hits. While I’ve identified many triggers, there are so many still unknown, if identifiable at all. I try not to let the possibility of a migraine dictate my life and activities but sometimes, it’s in the back of my mind. I wonder, when will the next one hit? How long will it last? Will anything help it? I hate the thought of living in fear, and well, I hate the feeling too. Because I have certainly experienced that many times throughout this recovery. I have put in the work to process it better for my own internal peace and sanity so that I am not defined by my brain injury or any other diagnosis such as migraine.

But when they hit, it is shattering. Every time. It’s a shock to the system.

The pain is something I don’t think I could ever be prepared for. And it is something I would never wish upon anyone. Well, I actually don’t like that saying because I don’t wish any sort of pain upon anyone but to put it in perspective, there are really no words to fully describe the pain or the experience before, during and after though I will attempt to describe it.

After a recent migraine, someone asked me, “So, it’s just like a bad headache or a hangover that lasts really long?” Having experienced many bad headaches and some of the worst hangovers (not proud of it), this does not compare at all. Multiply that by…I can’t even come up with a number because there is just no reasonable, quantifiable comparison. Add in living in the dark for many days at a time, with limited communication to the outside world.

Grocery stores used to be fun for me. This may seem weird to some. My sister and I would love to walk around for hours looking at different items, observing people and also figuring out what meals they were making with the contents of their cart. It was always fun to observe what people were buying and what they were doing. I also wondered if the strategically picked pints of ice cream someone settled on were to help cope with some sort of grief or heartbreak like I had done a few times in the past.

I woke one morning and decided to attempt to drive myself to the grocery store and shop alone. There are two big tasks here for me to accomplish. The first, driving to the store. I hadn’t been driving at all up until just a couple months ago due to my visual dysfunction. I had driven short distances, about ten times over the past three months. The second, grocery shopping alone. The grocery store was no longer enjoyable for me. I always have to give myself adequate notice of going to the grocery store and mentally prepare and then give myself a pep talk right before walking in.

It’s like a huge mission I have to accomplish – I have to prepare a clear list of items and not venture off from the mission whatsoever. My motto is get in and get out, as quickly as humanly possible. I have experienced plenty of migraines and panic attacks in the grocery due to the over stimulating environment on my brain and visual system. My balance is always affected and finding items in the store is always a very difficult challenge because scanning is still not a working function of my brain. My brain starts to malfunction in busy and cluttered environments. I have relied on others to help me at the grocery store up until recently as I wanted to start challenging myself to do it alone at times to build up my tolerance. It is difficult losing that independence and I am finding it is very difficult to gain it back.

I felt funny this morning but didn’t fully stop to recognize or acknowledge what this meant. My mind felt hazier than usual. I had been dealing with my nausea which is present almost 24/7 so that wasn’t unusual. But, after my usual mental preparation, I drive myself to the store. I make it to the parking lot where I feel even more off than before and the nausea has ramped up but still, I don’t stop to think of what is coming. I give myself a pep talk and head into the store. Get in and get out.

I’m standing in the produce section when it hits. The doom it brings is overwhelming. The ringing in my ears intensifies. I can feel my vision fluctuating as if I’m standing in the middle of a teeter totter and can’t find the perfect balance. It sways side to side, and is only a matter of time before it sways all the way to the downward spiral of migraine. This can’t be good.

An impending migraine. I rush out to the car. I feel sick and my head is throbbing. My eyes are so sensitive to light. It’s as if it is being directly absorbed as the storm is brewing, sending shocks of lightning throughout the entire surface of my brain. I feel my brain shutting down as I sit in the driver’s seat, unmoving. I try to will myself to get moving. Come on, Drew. I need to push through it and race the clock to get home before I lose my vision completely and I can’t function at all from the excruciating pain. I tell my sister so she can track my location on the drive home.

I start the car and hope I can make it but unfortunately only make it ten minutes home before I have to pull over on the side of the road because my vision is tunneling and my head feels like it’s going to explode. I have to at least get to a safer spot. There’s a gas station just a block away and if I can just make it to that parking lot, that will allow me a safer place. I pull over in the gas station parking lot. I can no longer see much. Thank God for the favorites list on the phone because I’m able to call for someone to come pick me up and drive me home.

I go to my bedroom, close the blinds, turn my noise machine on to at least cover up some of the ringing in my ears, lie in pure darkness and wait for the storm to pass. Although it doesn’t and continues for six days which in migraine time feels like an eternity. Nothing touches the pain and it’s a waiting game. During that time, I missed many events, talked to only a couple people and was otherwise completely disconnected from everything. When it finally ends, it is a huge relief but unfortunately many unpleasant symptoms continue to haunt me for one to two weeks until I return to my abnormal normal baseline. I call this the “migraine hangover,” which is still not comparable to a typical hangover. Once the hangover clears, the next migraine hits and the cycle continues.

Imagine lying in bed for days at a time in complete darkness. You can’t concentrate or think because the pain is so bad. You can’t look at even a sliver of light without piercing pain to the eyes and head. You can hardly form words or speak. You have more contact with the toilet than any person or anything. You are forced out of bed to sit on the bathroom floor next to it in darkness to vomit. You feel the floor and the walls to make it there in the dark, and sometimes have to crawl. Sometimes it is easier to lie on the bathroom floor so you have easy access. Sometimes the pain makes you feel like you are actually going to pass out.

Then the stabbing comes, as if someone is driving a knife into the side of your skull. You cry and beg for it to stop. You plead and are willing to make a bargain just to get out of it. It gets so bad to the point you ask God to take you in your sleep, if you are able to get any at all. Although your desperate cries cannot be heard and you are stuck in the migraine nightmare. It’s not just a bad headache or a really bad hangover, it is a hell in which you cannot escape. It is completely isolating.

I think to myself, is this what solitary confinement feels like but with severe, disabling pain? My Mom comes up every once in a while to check on me and bring water or hot tea. Just slide it under the door, I think to myself as I feel like I am a prisoner of my migraine.

I am on a mission to break out of the migraine prison and I am not giving up on the great escape.

Breaking Free

I wrote the above just short of three years into my recovery. A lot has changed since then. My first pair of brain glasses that I transitioned into from September to November served their purpose and laid a good foundation for my brain. I had improvement in a lot of symptoms which I will eventually describe in full detail. I returned to the Mind Eye Institute in November to determine my new lens prescription but unfortunately due to my health setback in December, I have not worn any brain glasses since November. As I became ill when I should have started the transition into the second pair of glasses, I was unable.

Due to this setback and my inability to wear my brain glasses that were truly helping my symptoms and other aspects of my health, it set me back even further and my brain regressed. Many of the symptoms that improved with the first pair of glasses have since returned. With that said, my brainwear plan changed and I had to recently start from scratch. The first transition into the glasses was filled with pain and anguish as the symptoms produced during my brain’s big adjustment were debilitating. I am reminded of how difficult the first transition was as I start my transition into my second pair. The transition during my first phase became easier around week 4-5 so I am confident this will improve in a month or hopefully less as my brain adjusts and re-builds healthy connections!

While I still suffer from daily headaches which have ramped up again from the brainwear transition, the migraines that became less and less frequent are staying away. Seven months later, I am hesitant but happy to report I have broken out of the chronic migraine prison which seemed unattainable for years. It brings me to tears as I write that. It is liberating. The many times I felt like giving up, where I felt it wouldn’t get better, I kept pushing and it did get better.

Thanks to a lot of support from many people, having faith and a select few excellent doctors in my corner who didn’t give up on me, I am where I am today. That is truly something I couldn’t picture just seven months ago. Now, back to my comeback…

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.

Today, We Honor Our Veterans

Today, on Veterans Day, I remember and honor not only my Dziadzia who served in World War II but also all of the veterans who have fought so hard to serve our country and allow us the freedoms we have today. Thank you for your service, and thank you to those actively serving. We should all take a moment to acknowledge the sacrifices and hardships faced in combat and also the sacrifices and hardships that many continue to face after combat.

According to the CDC, it is estimated that approximately 5.3 million US citizens are currently living with disability secondary to traumatic brain injury (TBI). While we do not know exactly how many of these are veterans, it is likely a significant percentage. It is estimated that 400,000 US troops with TBI are currently deployed. An unfortunate result and common wound of war is TBI. This can often lead to chronic disability, suicide, other diagnoses such as post-traumatic stress (PTS), major mental disorders among other diagnoses.

Here are some eye-opening statistics. It is important to note that these numbers may in fact be larger due to the often-missed diagnosis of TBI.

From 2000 to 2020, it is approximated that more than 430,000 US military personnel sustained a TBI
Incidence of TBI has steadily increased
Military members sustain TBIs during training activities, accounting for 80% of new TBIs
Nearly 60,000 veterans were evaluated and/or treated for a TBI-related condition from a VA medical center out of 770,000 of Operations Enduring Freedom and Iraqi Freedom
TBI significantly increases risk of suicide
It is estimated that over 40,000 veterans are homeless on any given night, accounting for 11% of homeless adults in the US
There is a 41% higher risk of suicide in deployed veterans and 61% higher risk of suicide in non-deployed veterans compared to the general US population
Suicide rates among veterans have increased to 20 per day from 17.2 per day in 2019
In 2019, 6,261 veterans lost their lives to suicide accounting for 13.7% of suicides among US adults
More veterans are dying by suicide than combat
Veterans with TBI are 60% more likely to develop dementia or Alzheimer’s
It is estimated that 11-30% of veterans develop post-traumatic stress, in comparison to the general population which is 6.8%

This tells us that something is not working. PTS is often a misdiagnosis and may in fact be undiagnosed and untreated TBI. The driving force of depression, anxiety and substance abuse may in fact be undiagnosed TBI. Leading causes of homelessness among veterans in the US are social isolation, PTS and substance abuse.

Why is TBI so often missed? A societal misconception still runs rampant regarding TBIs. “It’s just a bump to the head.” “It’s only mild.” “Just rest a week and you’ll be fine.” The injury can seem innocuous. There can be minimal or mild symptoms after the injury leading the individual to think they are “fine.” Other symptoms may not develop for months to years after injury, leading to the often-missed diagnosis. By this point, the brain injury may have been completely forgotten. Sometimes, and one could argue often times, these injuries are not a result of direct trauma to the head. A common cause of TBIs in combat are from the force of blast injuries. By missing the diagnosis of TBI and not treating accordingly, we are doing our veterans a disservice.

There have been heartbreaking stories of veterans who have sought out care for debilitating long term symptoms and disability due to TBI and are struggling to receive proper diagnosis and care. Accurate diagnosis, testing and treatment is lacking and our veterans and those currently serving deserve better.

There is misunderstanding and misinformation from doctors themselves. There are limited options for patients suffering from the effects of brain injury. Many are thrown on many different medications and antidepressants that end up making the symptoms worse in the long-run! There are options out there, though limited, and this should not be the case.

The fact is, the statistics are staggering and many of our veterans are experiencing chronic ailments and disability. Having personally experienced just how much further the scientific community and non-scientific community need to grow in the understanding of TBI and other related disorders, I believe it is imperative that we continue to spread awareness and hopefully gain more effective diagnosis, testing and treatment accepted and given not by just a handful of doctors to help those suffering from brain injury. Many veterans are living with chronic ailments secondary to TBI and falling through the cracks. We must help pull them out and also fix the crumbling ground for those actively serving and those to serve in the future.

These veterans may no longer be fighting in combat but a great majority are still fighting an excruciating battle of the invisible wounds of war.

Here are some great organizations that are helping our veterans receive proper diagnosis and treatment as well as increasing TBI research. Consider donating and/or share these with a veteran in need:

Millennium Health Centers

Warrior Angels Foundation

Concussion Foundation Project Enlist