I’ve been meaning to write this blog post for a long time. For a while now, it’s been difficult for me to authentically express how I’m feeling about my own emotional and internal experiences, because it seemed so insignificant compared to the battle that my younger brother - Xavier - recently faced.
After all, what could be worse than battling a universally fatal form of brain cancer for two years? Surely, whatever emotional turmoil I was feeling couldn’t be worse than what Xavier was experiencing.
At least, that was my thought process at the time. But the reality was: I had to keep eating disorder recovery at the forefront of my priorities throughout the entire process of watching my baby brother die. Because if I didn’t, I also would have fallen apart, and that’s a burden I could not have afforded to place on my family. Relapse was simply not an option.
My intention for writing this blog post is to encourage someone who is going through eating disorder recovery AND may be facing another incredibly difficult circumstance in their life. You’re not alone. And while the task at hand - to sustain your own mental and physical health - may feel insurmountable, you can do it. It’s necessary.
As I went through eating disorder recovery, I was amazed at the therapeutic modalities and skills I learned and constantly thought to myself that these skills could be applied to any challenging situation. If there's one message I want my readers to take away from this piece, it's this: the skills and lessons learned in eating disorder recovery (or any type of recovery from a maladaptive coping mechanism, for that matter), are invaluable and will serve you for the rest of your life. They certainly helped me to cope with the life-altering suffering and death of my baby brother.
Over the years, various types of trauma have been linked to the development and maintenance of eating disorders. Many studies have shown that trauma, such as sexual assault, sexual harassment, physical abuse and assault, emotional abuse, emotional and physical neglect, teasing, and bullying to be associated with the development of eating disorders (NEDA). Additionally, eating disorders often manifest when one is experiencing grief or loss, which in and of itself is another type of trauma (Alliance for Eating Disorders). Eating disorders serve to numb emotions, distract one from the pain they are feeling, or give oneself some semblance of control over a situation that feels entirely out of control.
So, when Xavier - a person whom I loved more dearly than I can express - got diagnosed with terminal brain cancer, I knew I was getting thrown into a highly triggering situation. I needed to be vigilant in order for eating disorder recovery to be maintained, and it needed to be my priority if I was going to be able to be there for him.
I faced a series of emotional triggers:
The deep, horrific pain of watching my baby brother suffer.
Watching my parents give their all and stretch themselves thin, wondering if they would survive this.
Dramatic shifts in our family dynamic and a rearranging of priorities.
Feeling quite alone - I had never previously known someone so young to face brain cancer. A lack of relatability among friends, and a feeling of disconnection or isolation.
A constant feeling of uncertainty. How long will Xavier live? How much time do we have left? Am I kidding myself if I continue to hold onto hope that he can live? How should I be spending my time? Is it selfish to focus some energy on my career right now? Should I move home indefinitely? Is it alright to be going back and forth? Am I a bad person for focusing on myself sometimes?
A constant feeling of powerlessness: My parents tried endless strategies for treatment. Chemotherapy, radiation, clinical trials, lymphatic drainage, acupuncture, supplementation, dietary changes, rife machine frequency healing, chiropractic care, physical therapy, electrical stimulation for neuropathy, psychotherapeutic support, family love, and more love, and more love. The list goes on and on… and slowly he still declined. Eventually, he died. We did the best we could, but we often felt powerless along the way.
And of course, the absolutely intense grief when Xavier finally passed away. The anger, the guilt, the sadness, the loss. And the disbelief that something so horrible could happen to someone whose soul was so beautiful, pure, and good.
I faced a series of environmental triggers:
A very physical disconnection from our community. During the pandemic, my family was significantly cut off from others for fear of Xavier contracting the COVID-19 virus. I was constantly afraid of bringing it home to my family whenever I left and came back.
Dietary changes: my family drastically reduced sugar intake, focused on incorporating lots of fruits and vegetables, considered implementing a ketogenic diet, cut out gluten and dairy for a time, went entirely organic, and focused on whole foods instead of processed foods. Diet was a consistent subject of conversation and consideration in Xavier’s care, and the family attempted to eat the same foods that Xavier did in order to best support him. Just this aspect alone could have been a huge eating disorder trigger - as any diet can be seen as "restrictive" - even though the intention was to facilitate biochemical changes within Xavier's body to make it an inhospitable environment to cancer.
Financial difficulties - my mother stopped working, my father worked half-time, my brother did not work in order to be available, and I specifically decided not to pursue full-time work so I could be more available.
So, how did I cope?
I never stopped going to therapy. Sometimes it was weekly, sometimes it was twice a month, but I never stopped investing in my mental health (I recognize this is a privilege).
I realized that any eating-disordered concerns weren’t important, and were only a temporary distraction when they came up.
I knew giving into the temptations of restriction or relapse would not serve me in the long run.
Being present with my little brother was more important than focusing on how my body looked, or what foods I was eating, or how much I exercised.
The energy that it would have taken to focus on and maintain an eating disorder would have taken away from energy I could use to help my family.
I didn’t have time to be self-absorbed, and choosing to go back to eating-disordered behaviors would have felt selfish to me.
I focused on the gift of gratitude and the abundance of love in my family, and opportunities to heal instead of succumbing to pain or loss.
When situations felt overwhelming or beyond my control, I leaned on faith, prayer, and meditation instead of any eating-disordered temptations.
I chose to show up for myself and prioritize my recovery so I could give more to Xavier and my family.
Eating disordered behaviors are not actions that filled me with purpose. Being a certain weight or fitting into a certain size of clothing doesn’t say anything important about my character. Being there for my brother and trying to support my family as best I can does say something important about my character.
It all came down to prioritizing what was most important in life. Focusing my energy on food, exercise, and my body wasn’t the answer. It never was. Prioritizing my own mental health enabled me to focus as much energy as I could on loving my brother and being present.
When you prioritize your own mental health, you’re not only serving yourself. You benefit those around you. And I also realized… There is a complicated balance between prioritizing yourself and prioritizing others that is not always easy to straddle.
Over the past two years, I was triggered countless times. But there is a significant difference between how I deal with triggers now vs. how I dealt with them when I was suffering with an active eating disorder. Now, I actively and consciously choose to practice self-care and skills learned in therapy to cope with triggers and difficult situations, instead of automatically turning to eating disorder behaviors. I no longer feel the temptation to restrict, nor do I see it as a solution to my problems. The idea of anorexia no longer appeals to me since the disorder almost took my life in 2018. That being said, I’m not perfect, and sometimes I found myself turning to food for comfort. I struggled with overeating and emotional eating on several occasions, and I would remind myself that this type of behavior is normal in moderation, and only disordered when it becomes a consistent pattern. It made sense that sometimes I would turn to food for comfort in an incredibly difficult situation. I’m human. What was critical is that I always maintained awareness of how and why I was using food to comfort myself, and refrained from criticizing myself for doing so.
Perhaps the idea that I’m most proud of is that I genuinely never wanted to return to using any sort of eating disordered behaviors. I knew that relapse was a risk, given my history… AND I also made a conscious decision that relapse wasn’t (and isn’t ever) going to be my story.
Instead, I chose to actively practice the skills I learned in eating disorder recovery, which stemmed from Dialectical Behavioral Therapy (DBT) - the main therapeutic modality that was used at the UCSD Eating Disorders Center, where I received 6 months of treatment in 2018. As Xavier battled brain cancer and I coped with the multitude of intense emotions that came up in my own mind and heart, I used DBT frequently, arguably every day, to support myself.
DBT is broken down into four main categories: Mindfulness, Distress Tolerance, Emotional Regulation, and Interpersonal Effectiveness. Each has their own subcategories and complementary exercises. Without getting too in the weeds with the methodology, here are a few examples of how I used DBT skills to cope with what I was experiencing:
Mindfulness
There are many definitions for mindfulness, but one of the core skills of Mindfulness in DBT is called Wise Mind. The concept of Wise Mind means that there is an in-between space between rationalizing a situation and one’s own emotional experience. The marriage between Rational Mind and Emotion Mind is Wise Mind. The idea is that both parts of self are important to consider in any decision or experience.
As Xavier battled brain cancer, I constantly had to remind myself that my emotions were valid and I should not push them down, and I had to consider the facts of each situation, and based on these facts, make conscious decisions that would benefit Xavier, myself, and my family.
Distress Tolerance
There are so many distress tolerance skills that are useful, but perhaps my favorite one and the most difficult one to implement is Radical Acceptance and Turning the Mind. Radical Acceptance means fully accepting one’s situation without judgment of oneself, the situation, or others. Then, once the situation is fully accepted as reality, we are more centered and better able to problem-solve. We can also better control and change our emotional reactions to the situation. The alternative to Radical Acceptance? Carry on without changing, and potentially suffer a lot more.
Of course, as Xavier battled and battled, I didn’t want to accept any of what he was going through. I didn’t want to accept that he was diagnosed with an incurable illness that not a single person had yet survived. I didn’t want to accept medical decisions like aggressive chemotherapy and radiation. I didn’t want to accept that he experienced complication after complication, with an incredible amount of suffering and pain. I didn’t want to accept that he lost his ability to walk completely. And when he died, I didn’t want to accept that he was gone from this world and that God took him home. I didn’t want to accept the layers of trauma the whole experience brought to my family and how it shook us to our core. I didn’t want to accept any of it, but without Radical Acceptance, I would have caused a lot more distress and pain within my family dynamic, I probably would have blamed myself and others a lot more, and I wouldn’t have been able to release the grief in constructive ways. I’m far from perfect, but with Radical Acceptance, I’ve been able to take a step back from many situations to see if I can first change myself and how I’m reacting, instead of trying to change everyone and everything around me.
Emotional Regulation
I really believe that this subset of DBT is the foundation for anyone in recovery from an eating disorder. The ability to regulate our emotions effectively enables a person to stop using destructive behaviors to cope. One of my favorite skills within this category, and perhaps the skill I used the most during the past two years is Increasing Positive Emotions. This skill means actively creating positive experiences, and mindfully collecting the positive emotions that come along with them. The purpose of this skill is not to invalidate or run away from negative emotions, but rather, find ways to create positive emotions and shift your focus to those whenever possible.
As Xavier battled brain cancer, there was much much heaviness. So much sadness, pain, suffering, anger. AND - so much joy, fortitude, awe, and miraculous events, if I was willing to see them. So, I sought to create positive experiences whenever possible. Listening to uplifting music, relishing in a swim at an outdoor pool for an hour, holding onto the belief in miracles or that full healing was possible, watching the sunrise with my Dad, playing with our cats and giggling at their silliness, watching our favorite movies together, making jokes with Xavier, writing down the words that he said. Intentionally collecting positive experiences and finding gratitude within them was not only helpful, it was essential to my survival.
Interpersonal Effectiveness
It would have not been possible to get through this experience without exercising Interpersonal Effectiveness skills. Interpersonal Effectiveness means taking care of your relationships, balancing your own needs with the needs of others, and maintaining self-mastery and self-respect. Validation (you may have stumbled across this buzzword on the internet) is a skill within this category. a skill within this category, but we had to use it all the time. Validation means to confirm, verify, and even authenticate what others are saying. It is an active form of communication that lets the other person know you want to understand their point of view. Within a family of competing and collaborative ideas, opinions, and emotions, we had to validate and listen to each other, otherwise we would have imploded (sometimes we weren’t so great at validation, and we did implode, but I believe that we did the best we could). Again, I’m not perfect, but the intention to validate others in any situation was necessary as we moved through difficult decisions and crisis management every single day.
The trials that we face in life always have the power to make or break us. I’m actually grateful for my experience with anorexia because it enabled me to be more resilient in coping with Xavier’s brain cancer battle better than if I had not gone through eating disorder recovery beforehand. I learned that the tools and skills in Mindfulness, Distress Tolerance, Emotional Regulation, and Interpersonal Effectiveness can be applied to any situation. I often thought back to my therapists at UCSD who would tell me over and over again, “DBT skills aren’t just eating disorder recovery skills, they’re life skills.” They were correct - I reached into my recovery toolbox every single day.
And so… for those of you still battling an eating disorder: know that the fruits of your efforts will benefit you for the rest of your entire life. Know that your noble pursuit to recover will help you remain connected to your true values and see what’s most important in this crazy and unpredictable experience we call life. And please know that you have a friend in me, cheering you on.
Finally, I found a common theme that I found within myself as I processed through and recovered from the trauma of my eating disorder, and as I watched Xavier battle brain cancer and supported him as best I could: I needed to create some sort of constructive meaning out of the suffering I experienced. That’s one of the reasons why I’ve focused so much passion and effort into my business: Embracing Strength LLC. It gives me great joy and purpose to support others. As I’ve reflected on 2022 and move into 2023, one of my intentions is Transformation: to transform the experience of suffering into purpose. To create something beautiful from something that was painful. And to remember with gratitude all the lessons that Xavier taught me in his noble fight.
For those who made it to the end of this blog post, thank you for reading. I hope that something within my writings was helpful for you. Wishing everyone health, happiness, and healing in 2023! And to the community of wonderful people who have supported my family for the past two years, I've said it a thousand times and I'll say it again: I am endlessly grateful for you.
Love always,
Kamila
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