A Powerful Tool to Stay Afloat When Pulled Under the Waves of Brain Injury Recovery

This journey would not be possible without the support of all of you reading this – my friends, family and strangers alike. I didn’t think my very big family could get any bigger, but it has! This is a community I cherish deeply. I wanted to take a moment to reflect on this. This is for you – a reminder of just how grateful I am for you.

While I wasn’t able to post last week and my next blog post was a different plan, it could not be fulfilled due to physical restrictions. What transpired over the past week led me to write these words here. Experiencing a long stretch of bad days recently, it always helps to focus on what I am grateful for. Gratitude is one of the most powerful tools of brain injury recovery. I’ve written a lot during this recovery as it is cathartic and helps me release some of the keepings in the mosh pit that is my brain.

Not only is it cathartic to write, it has also helped me to maintain focus on my ultimate goal of healing and achieving some sort of normalcy. Starting this blog and sharing the most intimate thoughts and details of my recovery publicly was terrifying and still is at times, but this was one of the best decisions as I had felt like I was doing this alone. This was despite having an amazing support system already because I wasn’t being fully transparent and open about all that I was experiencing.

Since starting this blog, I have received such positive feedback from many people. I have also been able to connect with many others on similar journeys, thanking me for sharing my story as I have helped them feel less alone, helped them receive proper care, and even helped some understand their loved one’s brain injury better. Aside from my writing being my own personal commitment that I will continue fighting until I reach healing, I truly went into this thinking if I could help just one person, my mission will be accomplished. I have done just that and more. That inspires me to keep going.

Many years ago, I read about a study that showed that just by looking at images of nature (when unable to physically be in nature) was enough to lower stress levels. This led me to think that maybe by printing dozens of pictures that bring me back to a very happy and peaceful moment, that it could possibly have the same result.

Last year, I printed pictures of moments and times that transport me to a happy place when I look at them because I could feel myself being pulled into a dark direction in my recovery. I turned the pictures into an art piece which is hanging on a wall in my bedroom that I see every single day. The majority of the pictures are of and with people who I adore and am so grateful for. There are pictures of moments shared with others – a beautiful sunrise, a concert, or a day at the beach. It is helpful to see that every day and remind myself of brighter times. My connections with people, with you, are so important to me and are invaluable.

Unfortunately, in the depths of extremely painful bad days and setbacks, it was and is still so easy to fall back into a hopeless place. I felt like I needed a better strategy to use in those specific moments. I had tried many things and various types of meditation without much help. Despite it almost feeling impossible in those moments, practicing gratitude was the thing that helped in a powerful way.

Just prior to the most recent rough patch I experienced, I was working on strategies with my therapist on how to navigate the really bad days and not feel so consumed, down or lose hope as a result. She recommended making note cards or little reminders of days and moments where I felt good and happy and to describe it in all its glory so that I wouldn’t forget that those moments are possible and that the bad moments are temporary. Before I could complete this task, I spiraled into a migraine that lasted seven days. Each time I thought I was possibly in the clear, it came back with a vengeance.

The progress in this recovery has moved at a sloth’s pace. No offense to sloths because I love them. It’s like living in slow motion. Once I feel I’m picking up speed and on a good path, I am destroyed by a wave, and sometimes pulled under.

Sometimes I can discern what triggered the bad days or setbacks and other times I can’t. I have noticed trends and patterns but there are still many moments where I feel as though I’m completely blindsided by it. This time, I knew the cause but it seemed to linger past what I had anticipated the amount of time it would take to get through. My brain was in major rebellion. Having no concept of when I would be out of the rough spell brought a great deal of stress and despair.

I know the path of this recovery very well at this point. It is not a perfect upward linear trend. It’s filled with ups and downs and setbacks. Somehow, though I know the path is very jagged and rough, I’m never fully prepared for the bad days. It is so easy during a setback or bad day to feel trapped, inundated and the end result being fully succumbing to fear. I think I’m in the clear but then it’s like I’m being dragged back into the torture of the pain. In the moment, it seems like too much pain for one person.

It’s easy to get caught up in the bad days. It feels like I’ve lost ground during the setbacks. It can be very discouraging which is an understatement. It’s human and I don’t fault myself for that but I’m realizing that in those moments I’m not looking at the big picture. Where am I now compared to six months ago? One year ago? Or two years ago?

Reflecting on times of the past where I felt this way, I made it through. That perspective helps. It is so easy to lose track of the big picture in those dark moments but I remind myself that my care up until recently had been majorly hindered by the simple fact that most of my providers were not looking at the big picture. I also need to look at the big picture rather than getting sucked into the familiar tunnel vision.

The days recently took me back to a moment in college. One of my best friends and I spontaneously decided to cross the street from our cottage to a local surf shop, buy boards and go directly to the beach to surf. Neither of us knew what we were doing and didn’t have any tips or guidance. We ran head on into some scary waves with no fear. We were pretty bad. And by pretty bad, I mean awful. At one point, I was destroyed by a wave and it took my surfboard with it. I was dragged under the wave by the surfboard leash attached to my ankle – that is what this recovery feels like.

Despite being destroyed by waves and aspirating quite a bit of salt water, we continued to get back on our boards and try over and over again. It was painful and terrifying at times but man, once we successfully stood up on our boards and caught a wave, all of it was worth it. And while we chose to do that, it is still a reminder of overcoming odds, pushing limits and facing challenges persistently. And that doesn’t just apply to this recovery but life in general which can be so turbulent. The water can be so calm at times but just like that, the waves start to roar and can even pull you under. I’ve realized I am not defined by the days of incapacitation.

Currently, good days are still the exception. I know that I can’t rush my healing, though I’d like to. In due time, the bad days will become the exception. There are no guarantees, I know, but I am holding on to the hope of my happy ending – my success story. Or rather, my happy beginning – of a life filled with new perspectives, wellness and vitality. Hopefully one day in the near future, I will be able to look back on these treacherous days which seem to engulf me like the big ocean waves, and stand up tall realizing that truly living again made the fight worth it.

Transforming the lowest days of my life into something greater, something magnificent, will be the greatest triumph.

The power of connection, community, faith, gratitude and love can never be underestimated. Thanks for being present on this journey. Your support and kindness will never be forgotten.

I have so much love for you.

From the depths of my heart, thank you.

The Psychedelic Light Portal: Another Pittsburgh Adventure

I just returned home with my Mom from another trip to Pittsburgh to visit my family and awesome team at the Regenerative Medicine Center. Right on topic with my most recent posts about mental health and well-being, I had the privilege of experiencing the Light Portal and its profound benefits.

The Light Portal, an unsuspecting wooden apparatus with psychedelic lights, amazing acoustics, sound and vibration in harmony, took me to a different realm. I wasn’t entirely sure what to expect. I am so grateful that I not only experienced it but that I had a beautiful experience. I joked that I was stepping inside a time capsule. It turned out that I really had no concept of time. It is difficult to fully articulate the experience but I am going to attempt to describe it.

As I am writing this, after three Light Portal sessions, I am experiencing the most energy I have in a very, very long time. It has been such a long time that I can’t even remember when I had such energy.

I have written quite a bit about how I have incorporated a meditative practice into my life to help with my recovery in which I have used many different modalities to reach a meditative state. Even with the help of these devices and apps, it can still be extremely difficult to reach a calming state.

After a stressful morning, I went into my first Light Portal session with a lot of stress and tension. It didn’t help that I was also running on one hour of sleep. I didn’t know if I’d truly be able to relax. I went into it with no expectations, but was hoping that it would help me in some way. I entered the Light Portal and laid down. Looking up, I could see the colorful lights with many light bulbs producing a trippy scene. The music cued and the grand experience commenced.

I closed my eyes and started focusing on my breathing. I was initially overcome with so many thoughts that it was overwhelming. My mind scattered all over to various moments and places in my life. I started reflecting on not just my most recent TBI but the many before, spanning my entire hockey career. Tears began streaming down my face and I didn’t know why. I then started picturing myself laughing, smiling and in full health. I reconnected with my youthfulness which I had felt so disconnected from.

As time went on, which again I had no concept of, my scattered brain and thoughts became calm. I felt as though I was transported to a different dimension, to a very spiritual place in which I had no pain. My body became so calm to the point that my limbs felt extremely heavy yet I also felt extremely light at the same time. My headache, neck pain and tension melted as I was transported. It felt strange having no head pain as I have been living with some form of head pain every day for the past two and a half years. I reached an entirely different level of calm and peace that I had never experienced before.

After the first two sessions, I slept through the night with only a few interruptions. This was a huge win for me as I still struggle with intense insomnia, waking up dozens of times through the night and sometimes not sleeping at all. The best part was that I woke up the next morning with energy and a new sense of well-being. I thought, this is going to be a good day. The energy was so bizarre to wake up to. I had wondered what was going on. What is this feeling? This is strange. I had completely forgotten what that felt like.

It made me realize that my energy for so long had just been going towards survival. Just surviving isn’t truly living. As I have come to fully realize over the past several months, spiritual healing is just as important as physical healing and maybe even more important. How can we possibly fully heal our bodies if our spirit is broken?

My last session in the Light Portal was even more moving than the first two sessions. The fog had lifted. It was a new level of peace I hadn’t experienced. Physically, after the session, I had no pain at all. I anticipated if I received a benefit that it would have been all spiritual and emotional but it turns out that the physical benefits were also astonishing.

I had seen my physical therapist after my sessions. He usually comments on how my neck feels like cement. This was the first appointment in over a year since starting PT that my neck and head had felt great. My physical therapist said to me, it was the softest my neck had ever felt. It’s quite amazing that the manual work on my neck couldn’t produce such a result but the Light Portal could.

More realizations had surfaced. I had lost touch with many things that still make me, me. None of the meditation apps or devices I have tried during the past two and a half years could have given me the same experience as the Light Portal. Transformative is an understatement.

I had been focusing on maintaining positive thoughts for so long but finally realized that my subconscious was holding onto negative beliefs and negative thoughts. It feels like a barrier deep within had been broken open, granting me a fresh and new perspective.

I have a different perspective on life and I look forward to what is to come. I realized that my healing does not fit into a box, ironically as I laid in the Light Portal apparatus that resembles a large wooden box. What I mean is, I’ve come to realize that the labels we use in our society restrict us and place limits on our potential. Everyone’s healing is different. I had been told many different things by various doctors through this time period, telling me there was no room for improvement, that this was the best I would ever get. I needed to accept that this was my “new normal.”

These are all restricting thoughts and they just aren’t true. I had been acting on seeds planted in my mind, on limiting beliefs, that weren’t true. I had started saying the same things to myself, beating me down further. What this left me with was a low belief in myself, in my worth and what is possible. The faulty program that I had become accustomed to in my brain was not efficient and was restricting me from my goals and my well-being.

A quote by Albert Camus came to my mind: “And never have I felt so deeply at one and the same time so detached from myself and so present in the world.” It was as if all that I thought about myself and my recovery, the preconceived ideas, the negative core beliefs and blocks to healing were released. I was released from those thoughts and ideas as they didn’t fit anymore. A block within me had lifted. There was no question about my identity or who I am. My heart and soul were at once the harmonious frequency that is me.

Finally, I could breathe in contentedness and be present in the world. I could just comfortably be. During my last session, I began to smile. For a long time, I thought that being content was a negative thing because if we become content, we will stop striving for growth and become stuck in a robotic routine even if it doesn’t suit our desires and dreams. The definition of content is “a state of peaceful happiness.” Finally at peace and finally content, I realized this feeling was a positive achievement and could not have felt more freeing.

Being alone with my thoughts during this recovery has been scary at times. I have been living in a hypervigilant state for so long where typical, harmless every day occurrences are perceived as threats. Negative thoughts and ideas were also threats. I was alone with my thoughts in the Light Portal and something I felt to my core that recurred over and over in my sessions was: I am safe.

I realize and fully know now that healing is possible, that I am enough, that my former self isn’t lost, that deep within I am radiant with health and youthfulness, that my spirit is intact, that those restricting thoughts and inputs can be repelled. What is light and good can penetrate and that is what is necessary to live a meaningful life filled with love, happiness and purpose.

I am so grateful for the momentum provided by the Light Portal.

Here’s to light, love and healing!

“nothing’s for keeps except that we must keep going.”

During this long recovery, my thoughts have wandered, taking me back to various moments in my life like a time capsule. It has been a period of reflection, growth and self-awareness. There has been a major disconnect in my mind, body and soul. While I have gone back to specific moments and reflected on them to positively contribute to personal growth, I have also found myself deeply yearning for the past at times and wishing I could rewind and do things differently.

This yearning for the past was prolonging the inevitable – facing and processing what had happened in its entirety. I couldn’t possibly become at peace and connect my mind, body and soul again if I weren’t present and always looking back, wishing I could live in the past. It took me a long time to realize this recovery isn’t just about physical healing but also emotional and spiritual healing. I couldn’t possibly be at peace by bottling up the trauma and storing it in my body. It has taken a lot to process everything I had bottled up for so long, and something I am still working on. I am still learning how to be completely present, to be transparent, to fully acknowledge what I am currently feeling, and to truly accept that my feelings are valid and I shouldn’t be ashamed of them.

It’s uncomfortable in our society to talk about mental health issues. I feel it’s really important and shouldn’t be downplayed or shunned. Throughout this time period, I have slipped into depression and have struggled a lot with anxiety. I think back to setbacks during my recovery, to such big setbacks I wanted to die. There were times where I thought, this is the end. I can’t keep going, I can’t keep fighting. The prospect of feeling no pain anymore seemed so much better than reality.

Looking back, it’s hard to understand fully how I got through those times because in those moments it really did seem impossible. It amazes me actually to the point where I picture myself in those moments and it’s like I don’t know that person, similar to how I picture myself lying on the ice after that big hit and it’s like I am looking at a completely different person. Who is that person? How did I get to this point? I’ve detailed my experience with identity crisis. I felt shame and embarrassment that I was experiencing that, constantly trying to diminish or belittle my thoughts and feelings. I was resisting change which in turn was resisting healing.

Through the help of loved ones and a lot of work with my therapist, I have gotten to a point where I am okay with the fact that maybe I’m not that same person. While some parts of us are constant, there are always parts that are changing. Change is always going to be uncomfortable and a lot of times, scary. I think it would be even scarier if we never changed or evolved, living like robots and suppressing how we are truly feeling. I have thought about this quote a lot lately by Joan Didion: “I have already lost touch with a couple of people I used to be.”

I’ve written about impermanence a lot. In just a split second, everything can change. One second I was having fun and doing something I loved with energy, focus and love, to losing my job, passion, energy, focus and well-being. Just like that…everything can change. Time is such an interesting thing, isn’t it? Sometimes you wish it would stand still, sometimes you wish for it to rewind, and other times you wish it would move faster.

I’ve looked back at things I have journaled over the course of this recovery. One day, I wrote over and over again, “This is temporary. This is temporary. This is temporary.” This was an attempt to keep me going, to remind myself that every bad day comes to an end. This rough stretch of bad health can’t last forever. This won’t last forever because no moment does. Thinking back to moments I didn’t think I’d make it through…they passed. Sometimes while you’re in the thick of it, you can’t think or see clearly and the darkness can overtake you and cause any bit of hope to evaporate.

Something that has recurred over and over in my mind during this recovery is a piece of art I came across as I was wandering the streets of Boston several years ago. I had arrived a few days early before anyone else for my brother’s wedding. I was going through a rough patch at the time – I had experienced a devastating heartbreak and it felt as though time stood still and I was marinating in the pain.

As I was wandering in an attempt to get lost and not be so consumed by sadness and what had occurred, I came across an amazing piece of art. It stopped me in my tracks and I felt like I was supposed to come across it at that very moment. I stared at it and started weeping. I stood there for what seemed like hours, like I was an inanimate object in a time lapse as hundreds of people walked around me. It was a 319-foot long message along a chain link fence that read, “nothing’s for keeps except that we must keep going.”

This message resonated through my being and still remains true. It reminded me that time is precious, that neither the good or bad times are permanent. It reminded me that we need to hold on dearly to the good moments but also know that the bad times aren’t for keeps.

As I have mentioned recently, the new treatment program in Pittsburgh has brought me hope for the first time in a very long time. Over the past couple months, I have felt a shift in healing, not just physically but emotionally. While I still experience bad days, I am hopeful and know that a bad day will always come to an end. The sun will rise tomorrow and give me an opportunity to start fresh. I admit, I still have days where just making it through the day is my biggest accomplishment but that’s okay.

This recovery has been draining, heartbreaking, and a lot of my thoughts for so long were hung up on everything I had lost, everything I was missing out on. The past several months, my thoughts have shifted to everything I have gained. And most of what I have gained is a deeper understanding of myself, my place in the vastness of the world and seeing things from a different perspective. I am still not at a place where I can say I am grateful that this happened to me and maybe I never will, but I can say I am grateful for the growth and everything I have learned and am still learning.

With the new treatment, good days have become more prevalent. I hold on to those days so much, and hope that as time passes the bad days will become less and less until there will be all or mostly good. That’s inertia.

On the bad days I remind myself that I must keep going because this will pass and there are lighter days ahead. Bad days aren’t for keeps. At any given moment, we are all experiencing something that we may not talk about, things that are heavy to carry. Here’s to whoever needs to hear this:

“Nothing’s for keeps except that we must keep going.”