How The Suicide Disease Changed My Life Forever

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My name is Anna, and I have survived two back-to-back brain surgeries.

Those words still sound unreal to me, like I’m reading a script about someone else’s life. But it’s my reality, and I am embracing it – scars, staples, imperfections and all.

Several years ago I started having sudden, unexplainable pain on one side of my face. It felt like I was being tasered, with electrical shocks rendering me incapable of eating, talking or touching my face without excruciating pain. I visited doctor after doctor with no concrete prognosis, until eventually I met with a neurologist who diagnosed me with something called the “Suicide Disease,” or trigeminal neuralgia, aptly named because it’s recognized as the worst pain known to medicine. The name alone made me feel like giving up. I was living with a chronic nerve disease with no known cause and no known cure. Because very few people have TN, there have only been a handful of medical studies done, so almost every treatment is experimental and not without significant risk. It didn’t feel fair that I, the twenty-two year old girl who always ate healthy and took care of herself, had to live with something as inexplicable as this. However, the neurologist prescribed anti-seizure medications, and after a couple months of trial-and-error I eventually discovered a pharmaceutical elixir that eased my pain.

Over the next few years I lived relatively pain free, with the TN only popping up every once and awhile for short periods of time. When I did have an episode, however, it was debilitating. The sudden onslaught of pain made me depressed, and my depression made me antisocial and frustrated. Every time it reappeared, I would stop doing the things that I loved and retreat within myself until the episode passed. It was like a dark shadow that would appear over my life swiftly and unexpectedly, and I lived in constant fear of it.

When I first moved to Atlanta I wrote a post about how the experience helped me learn to love myself. I finally felt happy, utterly in love with my life and indestructible. And then, right on cue, the trigeminal neuralgia decided to make an appearance. The stress of big transitions, coupled with lack of sleep and exhaustion, aggravated the condition and caused an episode. I felt like my world had been shattered. My happiness had been taken away.

I started taking my medicines, but no matter how much I upped my dosage the pain still continued to get worse. It got to the point where I would wake up in the middle of the night screaming because I was having an attack. My eyes would water uncontrollably and I would be paralyzed with pain. The attacks were no longer just provoked by touch; they would happen on cue every half hour like they had been set on a timer.

And then came the side effects. I was taking pain medication, anti-seizure medication, anti-depressants and anti-virals, and the combination of drugs was making my mind and body literally fall apart. My skin broke out, my hair came out in clumps, I looked ill all the time. I began having irrational suicidal thoughts and lost all of my drive and passion for life. All I felt was a deep and impenetrable sadness that was left where my spirit once was.

In an attempt to find a more holistic solution, I exhausted all of my resources trying to at least alleviate some of the pain that I was experiencing. Money and time spent on acupuncture, herbs, yoga, physical therapy, supplements, meditation and consultations yielded no results, which caused me to spiral into an even deeper feeling of hopelessness. This was it, I thought, I am going to live with this forever.

And then, in some strange twist of fate, a solution appeared before me. My mom, exhausted and desperate to help me, stumbled upon a neurosurgeon who specialized in treating my disease… whose office just happened to be right down the street from my house. When we called to set up an appointment, he just happened to have a cancellation so that I could be seen immediately. And during that appointment, he just happened to have another cancellation so that I could schedule an emergency brain surgery to cure my TN.

Brain surgery. Something that happens on television shows and in movies. Not something that happens in real life.

The morning of my surgery, I walked into the hospital surrounded by my family, and I knew that my life was about to change. Whether it was for better or for worse I wasn’t sure, but I knew that I had to be strong to get through it. I was in the operating room for four hours – twice as long as the surgeon expected – undergoing a complex microvascular decompression. After cutting out a chunk of my skull, they discovered that one of my arteries had looped itself around a nerve in my brain and then actually severed the nerve in half. They carefully untangled the artery and then inserted padding around the nerve so that it would stop the aggravation. This was the worst case of trigeminal neuralgia that the surgeon had ever seen, and in the youngest patient to ever undergo a microvascular decompression. But I had survived. I was alive. And most importantly… I woke up in recovery with a completely resolved case of TN. No more pain.

Since I had never had a major surgery before, I had no idea what to expect. In the days leading up to my procedure I did a lot of self-talk, telling myself that this was no big deal and that I would be back on my feet in no time. I had to tell myself that, or else I would’ve fallen apart. But what I had mentally prepared myself for was nothing in comparison to reality. I sat for seven hours in PACU, nauseous from the combination of medicine and because they had sawed through my skull, waiting for a room in the ICU to open up. All I wanted to do was be with my family, but they weren’t allowed to see me. Luckily, I had an incredible nurse who sat with me and held my hand through the worst of it. When I finally made it to my room in the ICU, dazed and drugged up, the nurses woke me every hour for 48 hours to shine a light in my pupils, draw blood and take my vitals. One of the nurses attempted to take the artery line out of my wrist and created a massive hematoma the side of a baseball that would remain an angry, painful, purple and blue bruise for three weeks afterwards. But I had survived. I was alive.

I lay in my hospital bed, unable to move my head, tangled in IVs, and for the first time in my twenty-two years of living I faced my own mortality. For the first time in my life, I wasn’t sure if I was going to make it. I continued to feel my mortality throughout the following weeks of recovery, when the pain was so bad that I couldn’t speak, when even changing positions in bed seemed like an impossible feat, and when my inability to eat cost me fifteen valuable pounds of body weight.

My spirit was further broken when a follow-up CT scan revealed that I had suffered one of the possible risks of brain surgery, a cerebral spinal fluid leak. Just when I was beginning to feel alive again, when I was gaining strength and finally found myself able to get out of bed, I was rushed back to the dreaded hospital for another emergency surgery. My incision was re-opened, my skull was re-sealed, and I was sent back to the ICU for monitoring. After I was deemed in stable condition, I was sent back home. Once again, I had survived. I was alive.

The entire experience of enduring two brain surgeries and the consequent recovery period fundamentally changed me. I was deeply impacted by the kindness of my nurses and doctors, the unconditional love and support of my family and the personal strength that I didn’t even realize existed within me. I realized that the petty things I had worried about prior to this were insignificant in comparison to all that I had just overcome, and that despite all that I had been through, I was immeasurably blessed.

My dad took off two weeks of work to nurse me back to health. My mom drove back and forth from Pensacola to Atlanta six times in the span of four weeks to take care of me until I was strong enough to take care of myself. My sister missed four days of nursing school so that she could catch a last minute flight to Atlanta to support me through my second surgery. She slept in bed with me every night to make sure I was okay, brought me food in bed when I couldn’t get up and wheeled me around the aquarium in a wheelchair to cheer me up. My grandparents drove two hours to the hospital just so that they could see me for five minutes and tell me they loved me before I was taken into the operating room – for both surgeries. My friends and family called, texted, messaged, emailed, FaceTimed, sent flowers, sent cards, visited. The sheer amount of love and support that I received from all around the world humbled me and shook me to my core. People I had rarely spoken to or hardly knew sent encouraging messages and words of advice, or just checked in to make sure that I was doing okay.

This incredible outpouring of love opened my eyes to the fact that I am so incredibly lucky to have such a strong support system. I have always been grateful to have a tight-knit family, but I never realized how true it is that without family, you have nothing. Without family, I wouldn’t have survived this experience. I wouldn’t have had the strength to take care of myself, or push through the nights where I sat awake crying out of sheer frustration over the fact that I was incapable of doing anything on my own. I wouldn’t have made it through the days when I was coming off the medication and anesthesia and felt so completely empty inside that I wanted to give up.

Facing my mortality taught me that the only moment we have is the one we’re currently living in, and even that can be taken away from us in a heartbeat. I realized that I could lose everything, and it was then that I began to truly grasp how important my family is to me. And not just my blood relatives, but also the friends who had become like family to me. Those people who called me when I was alone and scared in the ICU at 3 am and just needed someone to talk to. The friends that I had just met who texted me every day to ask if I needed anything. The long distance pen-pals who sent flowers all the way from another continent just to make me smile.

The most essential lesson that I learned from all of this is to never be afraid to live and love to the fullest extent imaginable. If you have something you want to say to someone, say it. If you have something you want to do, do it. If there’s something that you’ve always been afraid to try, try it anyways. We have no control over how much time we’re given, but we do have control over how the time we’re given is spent. I face each new day acknowledging that it’s a blessing and an opportunity to push a little harder and get a little further in chasing my purpose. Every day that I wake up healthy and alive is something to celebrate, because I understand that all of that can be taken away from me in an instant.

Life is unpredictable and, at times, terrifying, but there is beauty even in the most dismal of situations. As Ralph Waldo Emerson said, “Even in the mud and scum of things, something always, always sings.” Even after the hospital stays, the bills, the stress, the tears, the pain and the scars, I have survived. I am alive. I am here.

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7 thoughts on “How The Suicide Disease Changed My Life Forever

  1. Thank you for sharing this story, and especially for demonstrating what truly is the most important aspect of life–the acts of giving back and paying forward through love. Bless you and all the best to you as you live and love forward.

  2. So proud of you and touched by your story. I learned about this disease when treating someone with TN. “Shocking” to find out you had this horrific experience with it being so rare. Thanks for your work in finding, being, and inspiring purpose. We are forever grateful for you. Regardless of your stitches.

  3. To Anna, a girl whose inner beauty shines brightly through her eyes.

    I am so proud of you for the grace with which you handled a very tough situation. It is wonderful that you have realized how this situation has allowed you to grow, trust in your own strength, and to see with clarity the love and support that you have from your family, friends, and caregivers. I have been privileged to have had opportunity to be your surgeon and physician, and to have come to know you and your family. It is my greatest hope and prayer for you that your complete relief of pain without the need for the medications you were on for Trigeminal Neuralgis will be permanent, and will never trouble you again.

    With the best of personal wishes,
    Dr. Jim Robinson

    • Dr. Robinson,

      I can’t thank you enough for your kind words. You and your staff changed the course of my life completely and I am so grateful to have found such a caring and skilled team. My gratitude cannot be fully expressed in words.

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