Survivor Stories with Lacey Fuller

FEATURED IMAGE DESCRIPTION: Lacey Fuller diving with her right stretched out to bump the volleyball over the net during a beach volleyball game.

BY: HILARY PEARSON

The following is an interview conducted with Lacey Fuller, an aspiring professional beach volleyball player and former two-time NCAA women’s indoor volleyball champion residing in California. Lacey is an active traumatic brain injury (TBI) and post-concussion syndrome (PCS) advocate who shares her recovery journey on her Instagram social media platform @slightlyactive. Lacey’s recovery pedagogy includes a focused mindset on “staying slightly active” — as a means to regain independence and to manifest a meaningful life post brain injury.

Q: When/how did you get your brain injury?

LF: I acquired a concussion on August 27, 2019 after being hit in the head by a beach volleyball that was hit by Kelly Claes, a professional beach volleyball player who competed in the Tokyo 2020 Olympics. Before the ball was hit, my blocker served the ball to the wrong service target since I wanted to keep the ball on the defender. Even though Claes would not pass an in-system ball, her partner, who is considered one of the best setters in the world, set the ball right above the net. Given how tight the set was, the blocker should have blocked it 10/10 times. While this should have been a routine block, my blocker pulled off the net by a few feet into an area of the court known as “no man’s land.”

Thus, as a fearless defender, I decided to hang out in the middle back area of the court, because this was Claes’s hitting tendency even if her body was facing a different direction. So had I respected her line of approach, I would not have been hit, but since this was the last point of the scrimmage, I was aware by this point that this was the place to sit on defense, which I am sort of proud of in a weird way. But here comes the part that I am most disappointed about. I had my platform formed together too early. So once the ball was hit, I did not have enough time to separate my arms in order to protect my face, let alone make a successful defensive play. Being that the ball was traveling around 60 MPH, this head on collision was similar to being in a car wreck. After the hit, I would find a gash on my nose from the ball crushing my sunglasses into my face, and I was mildly dazed (but did not go unconscious).

Also, I remember having the immediate thought that this was the hardest hit I had ever taken to the face in my 20+ years of playing volleyball, which is saying something since I was a libero for the majority of my volleyball career and would take at least one hit to the head a season since it simply just happens.

What made this particular hit unique compared to the others was the speed of the ball and the whiplash that followed. Even though I would feel dazed, I would not experience any major symptoms until 3 days later. So, I would opt to continue training and I would even travel to Chicago to play in a qualifier for an Association of Volleyball Professionals (AVP) tournament before realizing that something was seriously wrong.

Q: At what point did you realize you needed to take a step back from professional volleyball?

LF: Well it was not my choice of course, but in the initial stages of my concussion, I had classic concussion symptoms (i.e. headaches, fatigue, nausea, etc) that would heal fairly quickly. So naturally I would go try and play after my symptoms went away, but then once I would try to reintroduce training, I would have symptoms relapse, which would occur three or four more times with the healing time in between each new relapse lasting longer and longer.

Finally, after several attempts of trying to make a comeback, I would have my most severe relapse that would basically be the start of a totally different illness that I would later learn was called post-concussion syndrome. Many people think it means sustaining concussion symptoms, which is not true, because at this point I was starting to develop intractable insomnia, vertigo spells followed by panic attacks, chronic inflammation, emotional dysregulation (simple things started to scare me to death, such as trying to swallow medication because I was afraid of choking), and PTSD where my jaw and neck would literally lock up in a grocery store due to the high level of stimulus.

So by this point, I was basically petrified of everything and was having so many symptoms that did not seem like “concussion” symptoms that I began to think I was dying. It was not until I was able to see a neurologist and neuro-psychotherapist four months later where I would be told that I would most likely make a full recovery. While this was a relief to hear, my entire family still basically thought I was having a quarter-life crisis rather than symptoms of an mTBI. And if I have not answered your question, I was unable to return to volleyball because I was unable to take care of myself given the severity of my PCS and undiagnosed postural-orthostatic tachycardia (POTS) symptoms.

Q: What gave you the idea/inspiration to start your slightly active movement?

LF: For the first four months of my PCS experience, I was so ill that I thought I would never play volleyball again, let alone return to a healthy state altogether. Since I was a completely different person to all of my friends and family, they assumed I would never get better either. This is something I feel is important to mention since I was so sick and anxious that I had zero faith in my ability to heal.

So until I was sent to a neuro-psychotherapist after telling my neurologist that “I could not sustain this lifestyle any longer,” meaning that I was contemplating suicide since I literally did not know how I could keep experiencing more setbacks that left me totally handicap, while my family assumed I should still be able to take care of myself given the invisibility of the illness.

Thus, my neurologist made an emergency call during my appointment to one of the top neuro-psychotherapists in the world who happened to be located about 10 minutes from my mom’s house, where I have been living ever since my injury took its most severe turn. During my first appointment with Dr. Neborsky, he sat there and listened and barely offered any insight, which I found weird at first. But at the end of the appointment, he told me that he believed I could make a full recovery and that we would work together “to replace fear with hope.”

Refreshed by Dr. Neborsky’s faith in me and with the help of my physical therapist who was helping me heal my neck, balance issues, and POTS, I became inspired. As someone who has used competitive sports and intense exercise as a coping mechanism my entire life, being provided with a list of exercises I could do on a daily basis was pivotal.

Even though most of the exercises were stretches and mild strength work that would not increase my heart rate, I found peace for the first time in my recovery. It literally just took an expert prescribing me exercises I could safely do without the fear of experiencing a major setback. In addition to this, I was provided with a treadmill routine known as the buffalo treadmill test in order to gradually manage my tachycardia and improve my cardio that was non-existent and the primary trigger for most of my autonomic dysregulation symptoms.

So at the start, I was literally walking on the treadmill for about five minutes with no incline while making sure my heart rate (HR) was at 60 percent of my max HR. As each week passed, I could add a little bit of speed on the treadmill and a few extra minutes while still monitoring my HR. Thus, over the course of about three months I finally was able to safely sit on an exercise bike for about 15-20 minutes while going at a moderate pace, and I also was finally able to take about an hour-long walk each day, which by this time was enough for me. Even though I still aspired to make a full recovery, any additional improvement regarding my fitness capacity was essentially icing on the cake at this point being that I was so grateful to have made this level of progress following the loneliest and worst several months of my life.

Once I became aware of how important it was for me to use my body, even if the exercises were very gentle and significantly less intense than the workouts I was doing pre-injury. I was a changed woman and needed to start documenting my progress in order to measure my gradual improvement while hopefully inspiring others who were facing a similar uphill battle. I wanted to be a voice and example to others that even at rock bottom, you can make gradual improvements each week with the help of experts.

Thus, when I started my new Instagram page, I randomly thought of the name @slightlyactive since that technically was how I felt. I felt slightly active!

Although, in most of my content I was performing safe movements that were prescribed to me. I wanted to be an inspiration to others who likely had not heard it was possible to heal from themselves or those around them. I wanted to spread the word that anything is possible. And rather than just saying corny stuff, I was trying to be an example to my new following of individuals facing a variety of health issues that were due to a head injury or another invisible illness.

While I loved being able to move physically, I would still inevitably experience setbacks that would force me to take breaks from the physical exercises. So then from there I wanted people to know that @slightlyactive can mean doing anything that prioritizes their wellness and health. It did not just need to be physical exercise. It could be taking a nap to restore their limited energy supply, drawing, puzzling, and whatever else that makes them both healthy and happy.

As I continued trudging along and making small gains each week, I eventually started going to a volleyball club I used to play at in high school and used their beach courts to work on standing shots with no intent of raising my heart rate. While this of course reconnected me to the sport I have always loved, I also thought that by practicing volleyball safely, I could eventually get back to playing at full capacity through a phenomenon known as neuroplasticity. Since then, I have had a handful of people follow my page religiously, especially if they were a fellow athlete.

Being connected to a network of injured athletes and non-athletes, I started to receive the validation and support I had been starved of in the early months of my injury. And finally, I was a part of a TEAM again. As long as I just listened to my body and kept faith in my ability to heal, I could inspire others who would inevitably inspire me as they made their very own gradual recovery gains.

Q: What was the hardest part? Best part? Any words of advice or encouragement for all the PCS survivors out there?

LF: The hardest part of my recovery was losing my identity as an athlete, because up to this point in my life I basically only knew how to experience self-worth through athletic accomplishments. So even though I needed to change and started generating self-worth from within, it was definitely challenging.

The best part of my recovery was learning that I can overcome anything, even if there was a chance that I would never return to the person I was before. Along with this, I have felt blessed to be connected to the brain injured community. This experience taught me how to connect with others on a deeper level by simply listening to their experience and offering compassion.

Also, I have had an opportunity to work with one of the top neuro-psychotherapists in the world. His unconditional support and compassion has inspired me to study sport psychology so I can help other athletes become more well-rounded individuals, overcome performance anxiety/perfectionism/injuries, and to hopefully change lives as I simply sit and listen to a large population of people who need to be heard.

If there is any advice or words of encouragement I could offer others navigating something like an mTBI, I would suggest finding a support group who is experiencing something similar, because it is truly powerful when you can relate to others facing similar challenges. In addition to this, I want to encourage others to celebrate the “little victories,” even if it is the most simple thing in the world. I believe this to be essential, because when I was at the beginning of my recovery journey and was petrified by the level of uncertainty, I started habitually reminding myself of the things I had and still have going for me through the form of positive affirmations, “I can walk. I can breathe. I can think. I can move. I can love. I can be loved. My brain can heal. Other people’s brains have healed, which means mine can too.”

And lastly, remind yourself to take this journey one day at a time, because no setback is permanent and sometimes visible improvement takes time to notice.

Stay @slightlyactive, Lacey.

Here is the link to Lacey Fuller’s Instagram @slightlyactive: https://www.instagram.com/slightlyactive/?hl=en

Some of my favourite posts and Instagram quotes from @slightlyactive:

Week 40

Been laying low this week due to moderate fatigue, and that’s OKAY!
While I would love to workout, coach, practice volleyball or schedule a weekend full of fun activities, my body is signaling that it needs extra rest so that I can get back to where I was pre-setback.

If you are needing extra rest these days due to a chronic illness, I SEE YOU.

If you are a caretaker/close to someone experiencing a TBI who struggles with fatigue, please just send them LOVE—no advice or suggestions driven by judgement.

When people who have not undergone a TBI are capable of sharing their empathy and compassion to those who are less fortunate, it’s such a game changer.

#slightlyactive #concussion #pcs #awareness #recovery #recoveryjourney #rest #fatigue #gratitude #listentoyourbody

IMAGE DESCRIPTION: On the left side of the photo there is a painting sitting on an easel with a green background with two orange birds of paradise flowers. Below the painting there is text stating “Slightly active”. On the right side of the photo there is Lacey Fuller laying on her pillow with her glasses on her head with a slight smile, she is wearing a black t-shirt. Below this picture it states “Also slightly active”.

Week 52

I am grateful that I can jump. I am grateful that I can train to some extent. I am grateful for the sport of beach volleyball and the community it has given me.

And most of all, I am grateful to be able to recover in my own time. Stay #slightlyactive

#concussion #pcs #pots #dysautonomia #volleyball #beach #beachvolleyball #gratitude #recovery #recoveryjourney

Week 72

IMAGE DESCRIPTION: There is a beige box with a text stating “Recovery from an invisible illness is a full-time job you can’t quit. There is a diagonal black line under the text, under this line it mentions hashtag PCSAWARENESS.

Week 132

Hi friends! Although I do not post week to week anymore, I am here to say hello and that I’m still healing from PCS two years and 9 months later.

Although I overcame exercise intolerance about a year ago, I still experience symptoms, such as tinnitus, benign positional vertigo, and intractable insomnia.

While I took it upon myself to go try and make two free throw shots in a row the other day, which took a whileeee might I add , I still feel changed by this overall experience and love to intentionally find ways to try new things that I am perfectly okay with being average at!

The goal for me in this ongoing pursuit of being “slightly active” is to try new things that maybe I took for granted before.

As I acknowledge that I am blessed to be able to push myself physically, I want to re-introduce the purpose of being slightly active, which is to make safe modifications to activities you once enjoyed IF/WHEN you feel SAFE doing so!

For example, when I was in a much more delicate state, I would visit a local beach volleyball court and hit o-speed shots from the ground without even jumping. As I tried to hit targets without overexerting myself, I soon felt a sense of fulfillment, which I once thought could only be experienced if I went all out on the volleyball court.

For many of my followers navigating the more fragile phases of recovery, being slightly active may mean taking a nap in order to restore your limited energy supply, doing some light stretches, meditating, drawing, listening to soft music—essentially, anything that makes you feel GOOD and excited for what is to come as you keep healing.

So even though I do not post as often, know that I still feel deeply connected to the brain injured community and implore you to practice being slightly active today by simply reminding yourself that you ARE healing and CAN achieve something in this moment by remaining HOPEFUL.

Anyway, stay #slightlyactive fam and celebrate the small, incremental wins that are not designed to define you yet feel good nonetheless! ❤

Week 74

Hilary is a Toronto-based non-fiction writer and UofT master’s student. Hilary is recovering from TBI, PCS— and spends much of her free time on FaceTime with Isla, her baby niece.”

Find ways to do what you love, even if it’s not at 100%

Here’s Hilary (the author) — doing her best to stay #slightly active.

IMAGE DESCRIPTION: In this photo Hilary Pearson is on a beach at sunset volleying a ball in the arm with her arm stretched upward. Beyond the beach there is a body of water and a city sky line behind her.

Hilary is a Toronto-based non-fiction writer and UofT master’s student. Hilary is recovering from TBI, PCS— and spends much of her free time on FaceTime with Isla, her baby niece.