Alive by LilLey
I had just taken a new job. A 22-year-old waiting tables -- living in my head, scheming for the future. My plan was to save money, move to Thailand and go on an adventure.
Fifteen minutes before walking through the doors of the restaurant, my cardiologist called me.
My latest routine tests were negative. The size of my heart had grown significantly in the past few months.
I lasted three days working at the restaurant. My life, career and any immediate plans were put on indefinite hold. A few days later, the worst was confirmed. I needed open-heart surgery.
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On February 25, I awoke at roughly 2 a.m. Disoriented and drugged, I felt an extreme surge of nausea rush through me. I gagged and felt every single painful inch of the breathing tube down my throat to what felt like my stomach. At the sound of my useless struggle a nurse came over and explained that the heart surgery had gone well. "Recovery starts now."
I remember the overwhelming sensations of weakness accompanied by waves of emotions threatening to break open my chest again.
I remember the loss of appetite. It hurt to eat, it hurt to not eat.
I remember the first migraine.
I remember--among a mountain of pills and needles--laxatives.
I remember the feeling of metal in my chest--cue Iron (Wo)Man jokes.
I remember accepting that I needed help to get up from bed, to lay down, to walk to the restroom, to breathe.
I remember the firm aid and gentle patience from my younger sister.
I remember the water weight and my skin stretching over my swollen body.
I remember my annoyance at the constant reminder of fragility.
I remember the first time back at my yoga practice and the comfort in child's pose.
I remember Sia's "Elastic Heart" and finding new meaning in old things.
I remember every visit, every note of support.
I remember the reoccurring message: you are loved.
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I survived. The months following my open-heart surgery were filled with hardships, lessons and growth. Going into it, I knew very little and I imagined that healing consisted of getting physically back in shape, but this beautifully painful experience set me on a path to endless growth.
Below I share some of the most important lessons I have learned thus far into my healing journey. I hope you find them useful regardless of your health situation.
It's okay to experience both PTSD and PTG.
Post-traumatic stress disorder is often associated with war veterans and sexual assault victims but it's also quite common in patients who undergo life-threatening procedures. Depression or symptoms of depression are also common after cardiac events.
Although, I experienced symptoms of sadness, especially during the first few weeks following my surgery, and I am still dealing with some of the trauma caused by the event, my overall experience was that of post-traumatic growth or PTG.
According to the University of North Carolina, PTG is a "positive change experienced as a result of the struggle with a major life crisis or traumatic event." The university also notes that PTG does not imply that traumatic events are good or that growth does not mean that there is no suffering.
For me, it was more important to understand and find ways to cope with the emotions of both trauma and growth than to pass judgment. My experiences, and your experiences in all their complexities are valid. Let me say that again: my experiences and your experiences in all their complexities are valid.
I implore anyone going through PTSD or depression to hold on to that bit of light. Seek a friend, a family member, a lover, a counselor and understand that a transformation awaits on the other side of pain.
The Zipper Club is diverse and welcoming - support is out there.
There is a strong, inspiring community of heart disease and open-heart surgery survivors on the web and social media. Some connect through what is known as the Zipper Club and others through specific concerns such as congenital heart disease.
Prior to my surgery, I avoided learning anything or even thinking about the procedure. It helped me to not know anything but it also left me desperately searching for someone I could speak to that might understand what was going on. But life works in beautiful ways and a few weeks before the surgery I received a press release for Sezin Aksoy's personal account of her journey through heart surgery and healing, "Rebirth within my heart."
I was able to read her book and had the privilege to connect with her at my most vulnerable. Aksoy underwent an extremely painful and long process to prepare for and recover from the removal of a heart tumor. Our procedures were vastly different but we shared similar experiences and her advice was much helpful. Her story is one that anyone who has underwent a medical surgery can relate too but especially relevant to young cardiac patients.
I have been unable to find someone my age who has gone through my procedure (mitral valve repair) but Aksoy's book was essential through the early stages of my recovery.
You will come to realize who is truly a friend.
I was dealing with disappearing "friends" at the same time that I read Aksoy's chapter on her similar experience. I cannot stress enough the importance of those around you in the early stages of recovery. We both experienced a huge disappointment at the hands of so-called friends who vanished or simply did not have the appropriate reaction to our procedure.
Some heartbreaks are a lot harder coming from friends, but we learned to be grateful that this experience brought us closer to those who genuinely care and want to be a part of an important event in our lives.
Letting go of relationships you once deemed essential to your life is not easy but there is nothing more important than self-care. You might find along the road that some people simply don't know how to be there for someone and it does not necessarily mean that they do not care. Regardless, take the time to evaluate if this person or people bring any value to your life.
The importance of gratitude
I understand, I was not a pretty sight. I was highly irritable, needy or would burst into tears something that came as a shock to not only myself but everyone around me.
This is why I am often overwhelmed with gratitude towards all those that visited, helped my family, called, sent gifts and left messages because all that love helped me push forward. I have a deep respect and appreciation for the cardiac team (shoutout to Mount Sinai Heart) and my amazing surgeon that in many ways gave me back my life.
I started a gratitude book, a sort of diary in which I write what I am grateful for each night. It helps put things into perspective and view progress in a positive way.
Take your time to process things.
So many of us have gotten used to skimming through life, never taking a mere second to grasp situations and experiences, missing the point and never fully savoring every moment.
Take a deep breath. It feels great doesn't it? Unfortunately, I had to learn this the hard way. After dealing with a mild lung collapse, I had to relearn how to use my lungs and eventually trust them to breathe deeply without being fearful of pain.
Your job is most likely not worth it.
While we don't all have the privilege of working a job with a real positive purpose please don't give your all to a meaningless job and the meaningless bosses that come with it. This does not mean that having monetary aspirations or wanting more is wrong but money for the sake of money takes a toll on your wellbeing. Life is more important.
Listen to your body.
When you are seemingly healthy it is easy to ignore the warning signs of a neglected heart. Learning to recognize the signs of unhappiness and complacency is a bit easier for us introverted folk.
For those who have a hard time shutting out all the voices around you, I recommend taking up meditation. I enjoy taking five minutes everyday in a comfortable location to focus on my breathing. There's no need to alter your breathing or pass judgments on any thoughts that pop up. Acknowledge them and wave them goodbye.
Religion and spirituality don't go hand in hand.
Like a lot of Latinxs, I grew up Catholic but always struggled with the majority of practices and beliefs. In college I admitted to myself that I am an atheist and I have not looked back.
After my surgery, I found myself searching for ways to reconnect with my heart but it was important for me to do so without involving religion. In such a vulnerable state, I knew it would be easy for me to fall into what I view as the trap of relying on god(s) for strength.
I am still exploring what spirituality means to me but I have found that my connection to my heart and soul flourish when I am being true to myself and living a life I am proud off. Yoga and meditation help me explore that connection without the pressure, guilt and feelings of unworthiness that I experienced in Christianity.
Your body is so much stronger than you can imagine.
You don't need to be reckless with your body to understand that your physical existence is powerful and important.
I am still adjusting to the healing scar on my chest but after going through this surgery I have never felt more comfortable in my skin. My body has been through a lot, it can handle a lot and I no longer see flaws where society might. Brown, oily, hairy and curly. Brown, oily, hairy, curly are all adjectives that have been used to attack me. Those assaults are a distant memory, blurry with a lingering scent of pity, and they can no longer harm me.
Some days I shave, some days or weeks, I don't. My hair is big. My skin lives with an ever-present smell of coconut oil. My spirit is a warrior. My scar is thick.
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If you are a survivor of open-heart surgery, I'd love to chat.
If you are a Latinx atheist, I'd also love to chat.