THE BLOG
01/31/2014 10:04 pm ET | Updated Apr 02, 2014

The Terrible Silence Between Breaths

"Wow, you can actually breathe on your own!" exclaimed a doctor friend of the family upon seeing me for the first time since my stroke. I was immediately taken aback and kind of offended by the seemingly strange comment. If this statement was made five years ago, soon after my stroke, this line would have made total sense. But now? I've made so many bigger accomplishments since then -- sitting, standing, walking, talking, etc. Those are definitely bigger deals, right?

Well, I was right about one thing. I learned to breathe on my own about a month after my stroke. But, actually learning to breathe on my own was the single most significant and terrifying experience of my life. I just so badly wanted to be past that experience, never wanting to think about that time again, happily keeping that memory safely tucked away in my past. But life-changing memories, or in my case, life-saving memories, however horrifying, can't stay silent forever. This memory, though painful, has power. It has the power to show me that life sometimes demands big risks to reap big rewards, power to prove to myself that I have this wild, obsessive determination that can move mountains, and power to remind me that no matter how far I still have to go in my recovery, my continued existence started with, quite simply, a miracle.

Breathing is supposed to be a simple process. A tiny area in the brain controls the whole process, so breaths happen sufficiently and automatically without one ever having to think about it. The brain works with various muscles in the neck, chest, and stomach to coordinate these breaths. Well, you know that tiny area of the brain? Yea, well it kind of, sort of died during my stroke, along with all those breathing muscles. I was immediately intubated and put on a ventilator before any craziness could happen. But the idea of me lying on a table -- unconscious, unmoving and not breathing is so unbelievably chilling, it feels just that, unbelievable.

This post has been so difficult to write because I'm just relying on my own choppy, sedative-blurred memories, which feel completely surreal. I saw these kinds of things on shows like "ER" or "Grey's Anatomy," but this time, there were no actors, no set, and no script. I still can't believe that in this new show, I was the main character, and I was struggling to breathe. I just hoped that like in the other shows, it would have a happy ending. Spoiler alert: It did, but I'll get to that.

I was then slowly weaned off the ventilator, but it was far from an easy process. Apparently, when your body gets used to an exterior device breathing for you, your body gets addicted to that feeling and never wants to let go of that easy breath. To help in my breathing, a tracheotomy was performed where a "trach tube" was inserted into a hole pierced at the base of my neck, through my trachea, to create a more direct route for air to travel to the lungs. But every breath was still a struggle. Every breath felt so deliberate, so forced and so effortful, like I could just stop breathing at any point.

I could instantly and easily end this whole nightmare if I just stopped breathing. But out of fear of the unknown, and out of love for my family and my world, I pushed on. But waiting for me were only horrifying silences. I was perpetually trapped in the empty, lonely, excruciating silence between breaths -- the previous breath was never enough, always leaving me craving more, but I never knew when, or even if, the next breath would come, or if it would be enough, for once. So, I just had to close my eyes and pray my way through each terrible silence.

Despite my constant discomfort, the worst was yet to come. With my stubbornness to push on, my pulmonologist finally removed my trach. Breathing completely on my own was challenging, but so liberating. I met the challenge head on, during the day, but that night, the hands down worst night of my life, the challenge definitely overpowered me. I didn't sleep at all and I'm sure my brother, Anand, who was staying with me that night, didn't sleep either. My body was still getting used to breathing on my own, so I couldn't breathe when the bed was reclined at all. But I couldn't sleep sitting straight up, and I knew sleep was the only thing that would relax my haphazard breathing pattern. Each of my shallow breaths left only a short silence in its wake, and left me gasping for more air. But my mouth was paralyzed shut, forcing me to gasp for air solely through my nose, since I didn't have the extra hole in my neck to help. I really don't know how that is even possible. A healthy person can pull air in through the nose by contracting the various muscles involved in breathing, but those muscles were ALL paralyzed. I'm not even sure how I got my brother's attention hundreds of times that night and communicated what I needed, since I couldn't talk or move at all. Then again, if you met me and my brother, you would totally understand. He has some magical, empathetic ESP when it comes to me. But regardless, there is absolutely no explanation for getting through each of those obstacles that hellish night. I'm so thankful my brother doesn't remember this night at all. The image of your little sister struggling for breath is not one I ever want him to think about again.

It's s a truly terrifying feeling to never feel like you have enough air, to always be flailing around for more, and to somehow permanently exist on the brink of disaster. I was too scared to call the nurse because the last thing I wanted was to have another hole in my neck, and the trach put back in. I was probably playing with fire, but I didn't care. I was reckless, because I so badly wanted to succeed at something. It killed me that, with every ounce of my will, energy and hope, I couldn't get any of my muscles to move even a micrometer. But, I could DO something about this. I could keep myself from calling the nurse, and show the world I wasn't going to let it beat me, even if I had to almost kill myself to do it. I kept saying to myself, just keep breathing, just keep breathing, just keep breathing, and thankfully, finally, we made it to the morning, and every morning after that. Now, all I have left from this experience are a few awful memories and a sweet scar on my neck. The silences are still there, but now they are long, relaxed, and without a doubt, interrupted by big, reliable, beautiful breaths. When life is too hard for me, when everyday is a struggle, when the world seems too overwhelming, I have to just keep pushing on, just keep believing, just keep breathing... and the morning will come.