What Being Invisible Looks Like

No one likes to be invisible. Even for an introvert like me, I still do not want to go through life unnoticed. However sometimes we can be seen but not understood. For those who suffer from Chiari like me, and countless other similar conditions, the very real problem is that our condition is “invisible.” You would not be able to tell by looking at me that my brain is currently 9mm beyond my skull and wreaking havoc on my nervous system and causing pain beyond explanation. In fact, there is a cruel irony for those of us who have suffered for so long when we become “good” at it. That is, the longer we suffer, the less we look like we are suffering. I have had the equivalent of a migraine headache every day for nearly 7 years now. While I may have better or worse days throughout the week, my “new normal” is likely a kind of headache that would make most people stay home sick. This condition has led to periods of feeling great hopelessness – what hope for a future is there when carrying my son for 15 min causes an intolerable headache – but has also led me to gird up my loins and find out what kind of stuff I am made of. I am determined that my condition will not define or own me and so, by God’s good grace, I persevere. 

Yet for me this means that I do not always look like I’m in pain. I have gotten used to seeing everyone and everything with auras around them, and little firework sparkles of light when I change what I am looking at too quickly. I’ve learned to cope with deep nausea brought about by sharp pains in my neck, or the feeling of someone driving a nail into the soft tissue just beneath my skull when I bend over to pick something up. I’ve gotten used to scorching hot flashes, general, aching nerve pain, and every day experiencing that hit-by-a-bus feeling of jet lag and exhaustion that comes from a last minute, 5-day, cross country, jet-lagged, whirlwind business trip but without ever having taken that trip. Yet with such obstinacy to reflect my pain onto others comes the problem that my condition becomes more undetectable to anyone who does not know me. Sometimes people I work with every day will catch a glimpse of me squinting with the blinds are opened or a noticeable decrease in energy after a long meeting and will politely, though ignorantly, ask, “Do you have a headache today?” I grin and just say yes, even though I want to sarcastically say, “Really? ‘Today’?” 

Do you know that feeling when you go on vacation and come back to work and everyone asks you “how was your trip!?” Each telling becomes less thrilling, less nostalgic, and likely less enjoyable for you and your audience. What may have originally been answered with funny anecdotes and pictures likely ends with “Oh it was fun. We really enjoyed it. Did you get my email about such and such work issue that I sent you? Where do we stand with that?” That is how someone suffering from an invisible ailment feels every day when someone asks how they are feeling – when they are first experiencing it and it is new and fresh and there is hope for a relatively simple treatment, we will tell you all about it and what the doctors say and omg how painful the headache is at the end of the day. After 7 years, dozens of experimental treatments, and different doctors with letters behind their names that stand for who knows what, your answers become bland. “Oh I’m doing okay. Just trucking along. Did you get my email about such and such work issue? Where do we stand with that?” 

This desire to be strong and not be a burden to others or not to be viewed with pity is almost paradoxical. The more I attempt to be strong and hide it, the more energy I must expend, which means the worse I feel by the end of the day and the less likely I am to “hide it” to those who matter most to me and who really should be getting all that energy I expended throughout the day – my wife and son.

I Don't Need a License to Carry My 9mm

I have a confession to make. My brain is too big for my head. I do not say this to brag but my brain is bursting out the seams of my skull… literally. I suffer from a condition called Chiari Malformation. This means that while my tiny little fetal skull was forming in my mother’s womb, it formed a tiny little shelf at the back of it – something you probably couldn’t even see with the naked eye. But this shelf is enough to crowd my brain out of my skull and down into my spinal column by about 9mm. And oh what a nuisance 9mm can be.

(I remember meeting a Chiarian at a BBQ and we both laughed that only people like us would have MRI images of our brains on our phones to compare.)

No one really understands why minor Chiari Malformations like mine (it really is barely average compared to some people with 15-20mm+ bulges) can cause so many problems. In fact, one of the truly aggravating experience of a Chiarian’s life (yes I made up that nomenclature on the fly only to find others have thought of it long before me) is that some Neurologists will look you in the eye and say things like, “Chiari doesn’t cause pain. It is just an attendant finding on your MRI.”

I am Jack’s unamused incredulity.

Chiari leads to clusters of painful conditions, the most common of which is persistent daily headaches. These are like migraines but range from feeling like something is lodged just in your throat behind your Adam's apple which is putting pressure on your neck, all the way to a feeling like every last one of your brain cells were fed up with working conditions, got organized, unionized, and all came with double-fisted pickaxes, shovels, and steam rollers in a protest to try and launch a full on pressure assault and escape from your brain at full velocity into the atmosphere. The cliché of “It’s not the heat, it’s the humidity” is roughly parallel to the felling of “it’s not the pain, it’s the pressure that is killing me.” I’m sure I’ll have more posts dedicated to discussing just what joyous wonders come along with having a "new normal" of daily pressure headaches when constipation rolls around from the 5^th trial medicine in a 5 month period and you cannot push… I’ll leave it there for now.

Another condition that is often a best-mate to Chiari is known as Fibromyalgia. This bile sounding word is actually a catch all term for a whole host of issues that one of my neurologists once professionally (and with a straight face) defined as, “You have a lot of nerve pain and we have no f*ing clue why.” This means that all day every day, I feel like you feel after you went to the gym  for six hours having not slept for 48 hours before. Muscles ache (especially shoulders and neck), with shooting spasms, weird tingling sensations, and a random 10 second prick of pain on my forearm or the outside of my right thigh or really anywhere where a nerve ending is just feeling antsy and left out of the party and wants to make their presence known. Hey, have a martini and an Excedrin on me little between the 2^nd and 3^rd toe nerve ending that woke me up at 4am last night!

This all started for me one warm California winter morning almost 7 years ago. I woke up early on January something 2010, with a mild headache that just decided to never go away. Maybe it had superglue or something, but it came in uninvited and unannounced through my neck and has opted to never leave - I guess it heard California has very friendly tenants rights and knew I'd have a hard time evicting him. Well gradually over the years of tests and drugs and experimental procedures (have you ever had a 5 inch rubber catheter shoved up your nose to spray your sinuses with Marcaine?) and massages and chiropractors and acupuncturists and every homeopathic witch doctor remedy that people would recommend and I was desperate enough to try, I found myself with little hope that a solution would be found and resigned myself to a life of sleeping on a heating pad and an ice pack at the same time. But more on my depression (another common bedfellow to follow on Chiari’s coat tails from what I hear) for another time.

As this blog rolls I’m sure I will relay more of some of the experiences… incidents really, that I have had living as a Chiarian with a bullet lodged in my skull - a 9mm one.

Livers of Iron - Why This Blog?

Why this blog?

In the myth of Prometheus, the Greek Titan is found guilty by the god Zeus of giving the gift of fire and the skill of metal work to his human creation. For his kindness to humanity and his defiance toward Zeus, his punishment was cruel and long suffering. Day in and day out, an rapacious eagle would perch beside him on the cliff where he was chained to peck out and then ravenously devour his liver, only to have it grow back each night due to his immortality. This image of unceasing agonizing suffering has long fascinated the imagination of poets and paupers alike. And for those like myself who live with the inevitable reality of a life of unrelenting chronic pain, it presents an enigma. How should we live in our own reality of unremitting pain, diminishing pleasure, profound loneliness, guilty remorse, and abiding hopelessness while still maintaining our humanity and learning how to thrive in a world that really is beautiful, loving, and glorious?

This blog will not be my attempt at banal self-help – one of the most domesticated and facile literary genres to haunt the Western world. This blog will not be my attempt at redemption or some cathartic self-realization. I am not on a humanitarian crusade trying to change the world. This blog is simply stories from my small sliver of life on the side of that bloody cliff. These are my life experiences as a chronic sufferer. Like my real life, when you cross my path on this page you will get the Tyler that happened to punch into work and write his thoughts that day – sometimes depressed and gloomy, often irked and snarky. I may be whimsical one day, able to find humor in an awkaward situation, or I may be pensive, and in a rare moment of mental clarity outside of the stinging fog, possibly connecting the dots of my pain, my family, my career, my hopes, my faith, my religion, my God, myself, and you.

This is a blog for those on the inside, suffering with me. If you are not a chronic sufferer, I welcome you aboard but with a warning that any benefit you receive is a side effect – the second hand afterbirth of our lives. What you see and hear here may hurt you, help you, humor you, or humiliate you. But hopefully when you look around the corpse strewn mountainside where we sit, and hear our stories in moments of unadulterated honesty, in vibrant and voracious color, you may learn to sit with us. I hope that this in some way will be an aid to you to realize that your husband or wife, mother or father, brother or sister, coworker or neighbor, who can be smiling and laughing one moment then squinting at the light and sulking in silence another, is not manic or mean, but may have turned a corner after lunch only to be pecked at and torn by talons of unimaginable depth – that sink past out fleshly livers and into our souls. I hope that as we sit together, you can learn that we may not always want help, we often may not want to talk about it, we may not even want your sympathetic pat on the head because it reminds us that the eagle is guaranteed to return again with the sunrise. We may not even want you there to be honest; but that does not mean we do not love you deeply or appreciate the love you give to us. Believe it or not, we are a mystery to ourselves even more than we are to you.

    

However, as I said, this blog is not for you. This blog is for myself and my brothers and sisters on the face of the rock as we linger together at the end of the day’s evisceration waiting for our livers to rebuild, or maybe, just maybe, to finally fortify into livers of iron and finally break the beak of the wretched eagle which torments us. This may come about either by the effects of a new pill or a treatment, by the strength of our resolve and the grace of our Creator, or by the final snipping of the golden strands of life at the end – hope is always around the corner. As you walk your way through the trenches between the cubicles, around the dinner table, at the restaurant, this blog is meant to give you windows into another world, another body, another life. Not glimpses of what your life could be like without the throbbing pain, but glimpses back into your own world, just as lived by someone else – a world very much like your own.

You are not alone.