I’ve been sitting at a cafe for the past 2 hours, staring at the blank screen. Every year, I come to this day, feeling completely unprepared. Today marks 8 years since my life changed forever.
On April 19th, 2011, I had my first Grand Mal Seizure. It was completely unexpected, and it threw my family and the doctors into a frenzy as we scrambled to attempt to find out what caused it. One day, I was a college student getting ready for her finals, and the next, someone with an extremely rare vascular disorder in my brain called Arteriovenous Malformation.
Since then, I’ve had Brain Surgery, graduated with a bachelor’s degree then a master’s degree, moved to New York City, began a career in tech, changed jobs few times, started AWS Newbies, created courses for Lynda, got diagnosed with Rheumatoid Arthritis, and became a Systems Administrator.
I feel like I’ve lived 4 people’s worth of lives in the past 30 years, and yet it seems like just yesterday that I walked into my college dorm to begin my post-secondary life, in complete awe of the enormity of a college campus.
Every time I got a new diagnosis or developed a new symptom, I am filled with dread that this might be the last straw that breaks the proverbial camel’s back. That perhaps “this is it,” and I’ve finally been caught by fate.
I’m constantly running a race against myself and my body. Against my brain, my disabilities, my fate, whatever it may be. Ever since that fateful day, 8 years ago, I’ve been running a race against time, living on what I perceive to be “borrowed time.”
That soon, “my life” as I know it will end, and I will be stripped of my physical, cognitive, or emotional stability and will look back on the previous years with envy at the sheer effortlessness of getting up in the morning and going to work.
There are a few things I’ve learned while confronting death, disabilities, and the permanence of chronic illnesses over the years.
Time is not Infinite
When we are young, we tend to think of time in the abstract, like something that’ll “be there” for a long time. 10 years seem like an enormous amount of time, retirement, a mere idea that probably won’t happen. We think there’s plenty of time left to do everything, and we aren’t really worried about “running out.” It doesn’t seem like it’s that big of a deal to spend a few years doing this, a few years doing that.
A bad job? A boring job? I hate it, but hey, it pays the bills. I can stay for a few years.
Honestly, I was thinking this for a while. I felt like I was always rushing to the next thing, and I wanted to settle down and stay somewhere for a while. I’ve been at this current company for almost 2 and a half years now; over a year longer than the length of time I was employed anywhere else.
But now, I’ve begun to realize that my time is not infinite. I have a set, finite number of years, days, hours, minutes. And every moment I stay stuck in a situation that doesn’t bring me happiness, that’s one moment I will never get back.
Your Ability is not Guaranteed
Another thing I realized, especially after I was diagnosed with Rheumatoid Arthritis, is that any ability or skill I have can be taken away at any time. One day, you could be training for a half marathon. The next, in the ER after a car accident, told by your accident attorney that you are paralyzed under the chest for life, and will likely never walk again. Everything you took for granted up to that point is shattered.
In my case, I learned how difficult it is to change clothes when almost every major joint in my upper body is stiff and immobile. I learned how difficult it is to open the bedroom door when my fingers are so swollen that I can’t put enough pressure on them to grab the knob and twist it.
I learned how difficult it is to type on a laptop keyboard with stiff joints that don’t bend where they should – and which come with extreme pain. Try typing for a bit with completely straightened fingers, and you’ll see what I mean. Now imagine that, but there’s pain like someone is constantly stabbing at your fingers’ joints with a pen knife.
I realized that everything I took for granted could be taken away at any time, and there was nothing much I could do to prevent it. This could be my cognitive abilities, such as when I sustained brain injury from my brain surgery, or physical abilities, as when my joints locked up and caused me excruciating pain, making it difficult for me to even walk.
While I managed to “make it back” in both instances and maintain ability to live and work independently, I realized that I might be on “borrowed time” until the next disease gripped my body, or I got diagnosed with another disabling medical condition. Or, I fell down a flight of stairs on the subway.
You’re But a Cog in the Machine
You’re but a cog in the huge machine that is this world, your company, your society, your generation. This seems negative, but in reality, it means that actually, what you do don’t matter that much in the grand scheme of things.
Ok, that still sounds bad, but hear me out. So I think we all have this bias that our lives are very meaningful. And I’m not saying they aren’t. Our lives indeed ARE meaningful and important. But in general, it’s meaningful and important only to us and our loved ones.
A company can replace you in a week or two. Society is too big to realize that you’re missing. We don’t owe anything to the company or society, and they in turn don’t owe us anything back.
So… If our lives aren’t THAT important… Why do we kill ourselves every day, stifling our real selves, working as a cog in a huge machine to please someone that’s not ourselves? What are we sacrificing our youth and our freedom for?
The realization that I am but a cog in a huge machine that don’t need me was simultaneously depressing and yet liberating. I put so much importance to the concept of me doing what “I’m supposed to be doing” because it’s what’s “expected of me,” believing that there’s a reason I am working a full-time job, moving up in my career, and pushing away thoughts about my passions and dreams.
But in reality, my life and what I do matters only to my closest friends, family, and myself. And if I suffer as a consequence of not taking the path less traveled, and trying to mold myself into someone I’m not… No one loses out other than me.
So with this idea in mind, I hope to say “Good bye” to societal expectations, and look for ways that create happiness, contentment, and health for ME.
Treat Yourself Like a Lover
I was hoping that someone will one day come around and make everything better, fix everything, and help me get somewhere.
I waited, waited, and waited. Nothing happened for years and years.
Then I realized… that someone was myself.
No one knows yourself as well as you do, and no one has as much at stake in your success as you do. You are the only person you have to be stuck with 24/7 for the rest of your life. So you might as well become good friends.
Treat yourself like your most beloved partner that you swear to cherish and care for for the rest of your lives together. Until death does us apart.
You are our own eternal lover and soulmate. This goes for both your body and your mind. Don’t say anything to yourself that you wouldn’t say to your beloved or your best friend. Don’t do anything to yourself that you wouldn’t want your best friend doing to herself, or you wouldn’t do to your partner.
If a decision is difficult, talk it out with yourself like you’d be giving advice to a treasured friend. Would you tell him to stay at an extremely toxic work situation where his boss is sexually harassing him for the sake of 401k match vesting? Probably not.
Turned Into a BuzzFeed Article
Unfortunately, this post ended up turning into something like a BuzzFeed article. But the points stand. I’m looking forward to re-evaluating my life and my future with context of honoring my body, mind, skills, and passions, and hope that the next 5 years will be as amazing as the past 5.
And while the past 8 years have been series of unfortunate events and experiences, both painful and exhausting, I would not trade them for the world, because they molded me to be me.
9 thoughts on “Four Things I Learned When I Faced Death”
I had a gran mal in 1994. I had surgery to remove the AVM in 1995. It blew out on the table. They told my family I would never walk or talk again. When I woke up, I had aphasia and right side paralysis. Good thing I was ambidexterous.
I ended up with the usual cognitive deficits and hemiparesis. I walk with a cane and a limp. At first, I couldn’t remember three numbers even after you told them to me. I clawed my way back.
I changed careers, from environmental chemist to systems administration/engineering.
I type 35 wpm with one hand, and advocate for disabled access in tech.
Thanks for telling your story. I recognise some elements there, and I love how you’re dealing with it. I like to think of it as moving from an entrenched mindset, where fear of worse things to come drives our behaviour, to an … advancing mindset, where we accept the risks and start forging our own path. I appreciate your openness. I hope you enjoy the journey.
I really enjoyed reading this. I can’t even begin to understand the scare you went through but some of these points you bring out I had to come to the realization myself with my lack of energy and my chronic pain. I totally understand your cog in the machine point of view and not in a negative way as well. To me, I like to live my life one day at a time and not try to stress myself out on the what ifs and so on so forth. One day I could be feeling pretty good to do some hobbies and be in a good mood and the next day I could be in so much pain and not want to smile at a single person and that is okay.
Thanks for sharing this and I’m ssooo glad you survived that surgery back then. *gentle hug*
I loved reading this. I might not have experienced the same things as you did, but I can still relate to everything that you’ve written. I especially love the part where you said that your ability is not guaranteed. It’s really easy to take things for granted, but dealing with a disease or seeing someone else dealing with it and having a hard time makes you realize that you really should be taking care of whatever you have right now because you never know when it might happen to you.
I also agree that you really have to prioritize yourself and learn to love yourself first! Although I’ve learned how to do this for the most part, I admit that I am still a work in progress in some areas. Well, I guess it’s just like any other relationship – you should always exert effort to improve and to get to know your partner even better!
I guess if nothing else all those horrors taught you things! I think treating yourself like a lover is right on. We often treat ourselves the worst. We gotta be better to ourselves!
I hope your doing well!
Your post has made waves and echoes all over Internet by now and I’m so happy that you took time to write this, and give us a chance to read it!
Thank you for this post, it really spoke volumes to me. We tend to forget that our lives can stop anytime so we can never love ourselves too much!
Wow, thank you so much for sharing this. I’m so sorry you’ve had to go through the things in your life that you have, but it sounds like you’re an extremely strong person and have taken it all in your stride with a smile!
While I have many health issues and have been seriously ill lots of times I have never quite gone through anything on the magnitude of what you have and have never been on “Deaths Door” so to speak. Yet, everything you say here really resonates with me so much.
I hope that your future is everything that you hope and wish it to be!