Prologue
This is the end. I have fought and crawled for a very long time to reach this point in my life where I can transcribe my thoughts with clarity. My life has been an incomprehensible series of events I could not have imagined were possible. I have endured things that mark everyday with the constant question of survival. For the past eleven years I have endured a daily torment of headaches, of widely different degrees and forms. There are days so bad the thought of enduring any more seems an unnatural cruelty. So many days spent in the depths of a dark room the world outside becomes fictional and is something I have to remind myself is real.
As of now I'm sitting here with a cold washcloth draped over my face, a tightness is arching over my brow weighing down my eyes and winding its way over my cheeks. I am tired and haggard with exhaustion from a migraine a few hours ago and this is what it is like every day. My throat is raging with the searing of acid, and my mouth can't let go of the taste of vomit. The acid and bile over the years has wreaked havoc on my teeth. Visiting the dentist is hard and they have stopped taking my appointments due to more than two dozen cancellations. My arms, legs and hips are all swollen and knotted from thousands of injections over the years. Despite the costs, I continue to give injections daily, all to abate the inordinate scales of hidden pain. The abscesses that have developed, while worrisome, are a small price to pay for the relief. My legs have seen the worst of it. They twitch with phantom sensations over an area of dead tissue. The nerves oblige an odd sting while the skin is dead to the touch, and yet I still force the needle through indifferently. Whatever the damage, it is a price I will pay to hold back the pain. Mobility, at times, is a secondary function in my sedentary life.
As for my mind, it exists in a place far from human presence. I live and breathe amongst the stars and my thoughts are a galaxy with thousands of worlds to call home. I see the earth as it is: A Pale Blue Dot, a tiny shimmer of light in the blackness of the cosmos. I see it as my past, a place where I grew up and in some sense a place where I died. I see my place in the cosmos like all other heavenly bodies as another lone wanderer. I spend most of my time living in dreamscapes, whether they be in sleep or in the musings of unwanted daylight, and I often find myself in the breathless void between stars, the Universe circling about me as if it were all my own. However, there is another world I must visit from time to time, and it is the world I share with others. In this world I am stuck in loops of agony. I live the best I can, but I am inevitably wrapped in a blanket of despair knowing there may be no other life than this. The days seem long, while the nights seem infinite, and yet I feel I have lost my sense of time. I struggle with memories of a normal life, and it is hard to accept that they even belong to me. At times I wonder if it would be better to let go of them because I am so different now. In truth, I have been transformed in spirit and character, and relating to others has become difficult while being understood seems impossible.
Retaining sanity in this life is proving as difficult as living it, and I am in a constant struggle to maintain focus on what I would like and not what I am enduring or have already experienced. Pain transforms us in unusual ways. While I would hope for myself to be polished, the pain has in some ways disfigured me. A once healthy mind has been altered, and under the pressures of pain my mind has deviated into baser primordial instincts to alleviate the pain through irrational ways. There have been times I have wanted to cut out my eyes, specifically my left eye which hurts in a festering way. At one point the thoughts nearly came to fruition. The plan involved a very large dousing of lidocaine and a spoon. The thoughts visit me when the eye is festering while in darkness, and I become afraid of what the light will do once the sun rises. Whether it is a downpour to my retina or the recognition of faces to my brain, I can be assured that the light will bring pain — to my eyes or to my heart. There in the darkness the thought that brings the most solace is of being able to put an ice pack inside my eye socket. Moreover, it would be easier not to look out at a world that I am not a part of and be teased by images of a life I cannot live and dreams I cannot fulfill. My reticence for this outcome was that I would forever be bonded to explaining how I came to this state. In imagining myself eternally explaining my actions I found it to be a greater burden than the pain compelling it. When the pain does leave for some time, I'd feel ashamed and embarrassed I ever considered this. Then I’d find days where I’d be in bliss just watching the wind pass through the trees, and I’d remember I once thought of taking this away. Then I'd close my eyes and wrap them in darkness and remember I need to kindle a fire inside me that can endure the festering discomfort.
Insane as the thoughts are there is logic to it, and it stems from the extraordinary nature of migraines. Migraines feed off any sensory input. Sight, sound, taste, touch, and smell are used like fuel to spread the fire and exacerbate the pain. Instead of being the basis for a connection to the world, the senses for a migraineur are one's greatest enemies. The remedy is always the same. Go into a dark and quiet room and stay there and thus begins the shackles of a bedroom cage. For the average migraineur, a passage of several hours and they might be able to leave. For me, I can remain in my room for days at a time. I leave only for necessities and then return. There have been days I will sleep, wake up in pain and simply lie there indefinitely until I sleep again. No other disease conditions a person for agoraphobia, a fear of the outside world, in this manner. When well, leaving the house feels unnatural and disconnected. When pain lasts for five days straight, the hardest day is the sixth because that is when I understand what painlessness feels like and how life should be. The realization hits me with emotional devastation and most often the time without pain is squandered. However, as the sixth day keeps returning, I eventually seize upon it with vigor.
Wouldn't it be simpler to end a life like this? I have confronted this decision so many times over the past eleven years it is hard to convey how improbable it is for me to have made it this far. I was once so burdened with the decision of suicide; I made the decision on the flip of a coin. The memory is haunting, but what is remarkable is that it happened very early on, and I never did it again. Yet, thereafter for years the decision of suicide weighed me down and would occupy my thoughts endlessly on a loop of being locked in a state of mind that could only think about ending itself. The remedy was always to do nothing until the thoughts passed and I could be reborn into a stable state of mind. My reasons for living changed through the years. First it was a responsibility to my parents not to kill their only son and second was to at least outlive my grandparents. I never envisioned myself a writer at any point in my youthful health, and after a decade of disability my grandmother was the only suggestive force for the endeavor. The pain then is that I have outlived her, and she will never know who I was. Beyond this, what has kept me alive is a long and tortuous path to something I call The White Tower.
Memoirs come in many forms, and typically fall into categories. The most notable are from people of eminence or posterity who describe their career in their own words or with the hands of a ghostwriter. The second are those who are already writers and produce it at some point in their career. Then there is fiction that is written in the form of a memoir, and sadly there are some memoirs that are fiction. However, A Disease Memoir, is a minority within the minority of various other disease memoirs, except this disease is invisible. In truth, part of my impetus to write was in reading another migraine memoir that I could not identify with, because the author was not disabled. He appeared to live a relatively normal life, and the discrepancy sparked a spiritual endeavor to record my memories.
To the sufferer of a mysterious disease there is a special agony, a special burden because one only learns how special it is through suffering. Some of my first memories were headaches and I had to learn that I was special. While I have tried to divorce myself from the word cure and to embrace the concept of management, I am forced to embrace the only thing available, which is a literary cure. Moreover, there have been things I've endured that were avoidable if others understood the nature of my disease. Of all people, it is sometimes the most educated that need the lesson. There are many doctors with many conflicting opinions over the fundamental nature of headaches and their treatment. Some go so far as to dismiss them outright and marginalize them from a neurological condition to a behavioral or mental condition, and even to the extent of just a complaining condition.
What I wish to accomplish is a clarity and understanding of the disease that has destroyed my life. To be precise my condition does not even have a proper name. I've had to settle with different titles contested between different doctors over the years. The most common diagnosis being chronic migraine, or chronic daily headache interspersed with status or complex migraines. As strange as it sounds, I have clear distinctions whether I am suffering from a headache or a migraine. At one point I was given the diagnosis of trigeminal neuralgia, something quietly called "the suicide disease" in private medical circles after the number of people diagnosed with it having succumbed to suicide. I have also been told I do not have this condition, and mine is just pure migraine which also routes itself through the trigeminal nerve. Yet I retain some of its symptoms in that the pain extends into the face and isn’t limited to the forehead. Whatever the true definition of my disease is, the focus and purpose of this writing is to give a voice to the nebulous and misunderstood condition that is chronic pain.
Chronic pain falls into a category of its own in the medical world due to its very nature. While it affects a vast number of people there are no awareness campaigns, no marathons, no race for the cure. Chronic pain is indirectly terminal. Like diabetes, you manage it, or you die. However, the difference is the death certificate. The condition remains invisible even postmortem, and therein lies its place for public awareness, in that its existence is buried in the depths of overdose and suicide statistics. That grim reality is among several reasons why my world and so many others like mine are kept in the dark.
Another reason is that chronic pain is not unified. It exists in dozens of forms in different areas of the body for dozens of different reasons. Migraines are an intersubjective disease, in that they are invisible but have a collective commonality of personal experience. Yet there are numerous types of headaches besides migraines. Cluster headaches are a clear example for this, in that they have different symptoms and an alternative neurological mechanism than migraines. Yet some people can have both and I cannot rule out that I am one of them. There are also organic migraines which are caused by a traumatic injury to the head. I have had some concussions, but my disease appears distinctly innate and a matter of genetic inheritance. Finally, chronic pain is treated differently in that there is simply no cure; like diabetes, it is managed. Yet for many years it was mismanaged with the over-prescription of narcotics for economic gain.
The word pain itself also needs clarification. Lance Armstrong once said, "pain is temporary," which defies the notion that it can be chronic. Physical exertion is commonly referred to as pain, but it is fundamentally different in that it is voluntary, and the brain will see it as such. Any form of pain that is endured by choice is interpreted differently by the brain, self-mutilation included. The less control you have, the greater the trauma. In this sense trauma is the keyword in that it implicates external forces. Trauma is a word that comes from the root words to twist, to turn, to bore, to drill, to pierce. All of which inflict pain against one’s will. There are traumas that affect the body and then there are traumas that affect the mind, and my disease is more than capable of both.
As I remember Psalms 23: "Yea, though I walk through the valley of the shadow of death, I fear no evil." Chanted by hell-stricken soldiers into the march of a highly probable death, these words are the bedrock of perseverance that has survived the ages. However, there is something overlooked. It is "Yea, though I walk..." which is an intangible admittance of impermanence. That it is, in essence, a trial of passing. It would be very different to say "Yea, though I live in the valley of the shadow of death, I fear no evil." With no hope of escape there is a weight of insurmountable doom. After all, if you lived there, and there was no hope of leaving, fear may creep in and devour what is left of you. Like this, my disease has devoured me, and the longstanding fear is that the battle is both continuous and unwinnable.
From what I have come to understand, diseases are like holes, valleys, or disfigurements in the ground on the landscape through which our lives journey. Like the common cold, some are but dips in the ground where we may stumble, but others are deeper and can change lives. Some may have a large opening and take in a great number of people, while others are small, and most people will be able to walk past them and never encounter them in their lifetime. There are holes you can enter and painfully climb out of, like those of addiction. Then there are diseases that are more like trenches that constrain one's lifestyle, like diabetes, one must live in the confines of this trench. Life, but with limitations. Then there are the holes which we all fear the most. They are deep and pitted with spikes, they may be terminal, and many are lost, and as such they command the most attention, especially when they strike down the healthy quite quickly.
Then there is my disease. It is narrow, and hardly noticed. Congenital, I was born with it, headaches were among my earliest memories and as I grew it came as a shock to learn they were not inherent in everyone. Migraines occurred twice a month until everything changed at the age of fifteen and they became daily. My disease from there on is a hole without a bottom, an abyss. I have been falling down it these past eleven years. Like a filmstrip, the events of my life play out as I'm falling. I am a bystander in my own body. Sometimes the only choice is to close my eyes and dream of a different life.
As I fall, I must listen to voices who wish to tell me there is no hole beneath me, and that the disease is all in my head. There are psychophysiological aspects to the nature of headaches and migraines. One's thoughts, emotions, or behaviors influence, exacerbate or trigger the pain, and likewise the pain influences one's thoughts which leaves the sufferer with a burden of guilt and responsibility. Yet, anxiety causes headaches, depression causes headaches, stress causes headaches and muscle tension causes headaches, and this is where this disease takes a turn for the insidious. Headaches cause anxiety, headaches cause depression, headaches cause stress, and headaches cause a great deal of muscle tension. This is beyond abnormal for a disease. The bilateral relationship between the symptoms of the disease, which also act as aggravators, is what sets this disease apart from all others, including other chronic pain conditions.
In the medical community this feedback loop is called the cyclone effect. The disease begets the disease. The farther down the hole you fall the faster you end up falling, and the more conditioned you are to its impact and intractability. This phenomenon is more commonly referred to as a vicious cycle, which might give the impression that it is fundamentally breakable, even for an interval of time. However, the relationship with the cycle itself cannot be broken and the perturbations that trigger migraines are often unnoticed or are the filaments of indiscernible mechanisms of cellular trauma. Aside from the feedback loop, migraine triggers are likely very analogous to an allergy. An allergy is the immune system overreacting to innocuous substances or agents; with a migraine it is the central nervous system that appears to be overreacting and creating a cascade of disorder, which in turn creates a cycle.
Meanwhile, the brain is conditioning itself for cycles, carving out patterns of disorder creating pain, pain creating response, and response generating pain creating response. Neural circuits carrying the messages of pain turn from back roads into highways. It is a paradoxical truth that the brain is capable of conditioning itself towards illness, and the brain itself becomes set to a clockwork pattern of agony, and with it comes the crushing weight of hopelessness and despair which helps ensure the cycle stays in place.
Knowing this, I carry the responsibility to navigate my disease sailing back and forth through storms I see coming, and yet because my thoughts and behaviors influence some of my headaches, I am left with an awful burden of responsibility. The complexity of my health is one of the main reasons why I keep my disease a secret when meeting people for the first time, and it is prudent to be thought of as normal for as long as possible rather than lay out the incommunicable and heartbreaking reality.
If you were to meet me, you may not notice the surgical scars on my temples or the way my eyes twitch in the light. Surely you would not notice my condition because if you are seeing me, it is because I am well enough to be seen. Yet time changes that, and it may appear in my voice or in my absence of speech. If it were to slip somehow that I suffer from severe recurring headaches, I'd no doubt have to suffer the litany of questions, and, at worst, the possible advice. It always begins with “have you tried...” and the answer is always yes. While I didn't always have them, pointing out the surgical scars usually renders silence.
The advice I used to get had an annoying formula to it. It comes down to a matter of behavior: there is something you are supposed to be doing that you are not or there is something that you are doing that you should not. It may range from dietary guidelines, to posture, to controlling my mood, to relaxation techniques, alternative therapies or simply just medication. In total I've tried some seventy medications, of which I know only a fraction by memory, and they range from the preventive medications that are taken daily to the abortive that are taken to knock a headache off its upward course. The types of medications used to treat chronic headaches are almost always taken from medications whose pharmacological intent was designed for other conditions. They range from antidepressants, anti-inflammatories, antipsychotics, antihistamines, corticosteroids, as well as anti-seizure and medications for hypertension. The one exception is triptans, which have something of a unique place in medical history: it’s the only known case where a class of drugs empirically proved that migraines exist to practitioners who didn’t experience them and doubted the condition extended beyond the mind. Yet unfortunately, both pure analgesics for pain and triptans have the pernicious quality of causing rebound headaches when overused and thus perpetuating a vicious cycle.
After years searching for a medicative solution and exhausting every other reputable known therapy, surgeries became the only option left open. I've had three surgeries, all of which leaned experimental, yet none had any significant impact.
When I was younger and in times of complete desperation, I even tried bloodletting on the long shot that less blood in my body might ease the throbbing. I didn't cut myself or inflict any noticeable harm. Instead, I'd knock myself on the nose a few times until it bled, and it made a great deal more sense that the blood was being drained directly from my head. I certainly didn't tell anyone I was doing this as it would likely cause alarm. It takes less effort than one might expect given my nose's propensity to bleed so easily, and in the end, I'd just lean over my vomit pail and watch the crimson drip take my mind away.
In these late hours of frustration and damnation I try to imagine those that came before me and died along the way before they could tell their story and how easily I could have joined them. Even now I feel more connected to those who have lost their life in the battle against chronic pain than the living around me. I count my blessings as often as I can, for without them I would not be here. For one, I am special in that I have received the best medical treatment this age has to offer, and yet my life is still one of continuous agony with no end in sight. More importantly, without the assistance of my parents I would have lost my will to continue, and my connection to my father remains one of the only things anchoring my mind to this world. I've gone several months at a time seeing only the faces of my father and mother and that ghastly strange visage in the mirror. People of the real world are distant abstractions to me, and how they live their lives is almost incomprehensible to me. My life is the only one I have ever known, and I cannot truly envy the lives of the healthy because a life other than mine has become a foreign mystery. When I see still photographs of people in groups, smiling, I must accept that is something I do not have, and imagining a life where I am one of them doesn’t seem grounded in reality.
Overall, the psychological toll of what I have been through is as great an obstacle as the pain itself. The storms my mind has weathered have eroded pieces of my cognition, memory, and self-worth. I will occasionally examine my life with an outside perspective and slip into a catatonic stupor and remain a motionless husk with tears running down my face, and there in a silent room I will have only a dull constant ache to call my friend. I will speak long into the darkness and wait for an echo of optimism that never comes. Then I find myself curled up in bed like a crinkled piece of paper that the world has thrown out and I discover I am trapped between the netherworld of the living and the dead. Under the forge of great pressure and force that turns the sane into the insane, I have become a nameless ghost, dreaming in an empty room, searching for something of meaning. Long into this slumber, with a mason’s trowel my mind slowly found the pieces and the path to The White Tower and with it a meaning to continue.
As of now I'm convinced the salvation I seek is in words. The darkness and complexity of this disease has ravaged my mind, twisted my soul and clarity of thought seems to be the only viable solution. After all, it is a very different type of suffering when one does not know the root cause of one’s own misfortune. To suffer in ignorance and darkness one must set oneself to come to terms with the unknown and the unknowable. People regularly ask me what causes my headaches, and every time, I am taken aback in speechless confusion. It has been a long time since I asked that question myself because I have been forced to accept the headaches and their devices. Even if the neurological mechanisms are beyond me, I am still determined to find a better answer and elucidate the overlaying effects that destroyed my life.
When early cartographers got to a point of undiscovered seas or possible lands they knew nothing of, they would often draw mythical beasts on the edge of their maps. My disease is much like one of these beasts. It hides in some uncharted corner of my brain and in many others, and the wind has swept me off the map to survive amongst these beasts. This has not been a journey. A journey is something that can be undertaken voluntarily or be some misadventure gone awry. This is an Odyssey. I have been thrown into this life and am at the mercy of the wind and waves of misfortune, and I am trying to return home through uncharted waters with the story of these beasts and the islands where I took shelter.
There are natural limitations to how well I can explain with words the pain I and others endure. I can only describe experiences, but to a person who has never had a headache they may be altogether meaningless. At the reader's discretion, I offer an experiment that gives a brief glimpse of the pain and its scale. It’s a harmless means of experiencing a headache that simply involves ice. Fill a plastic bag with one to two handfuls of ice and lie down with the bag placed directly on your forehead. If you have not lain down when you apply the ice you will remove the bag immediately. Within seconds you will feel the severity and be able to test your pain tolerance. I have done this several times as a means of standardizing my pain scale over a long period, in which my scale may be unconsciously revised over time. While it does take some focus, I am able to keep the bag on my forehead for about 40 minutes. After a while it goes numb, and I have never had any problems with frostbite, but that is not to say it isn’t possible. In my experience the ice usually melts before it becomes an issue.
Also keep in mind the nature of how your thoughts respond to the pain and how you are partaking in it voluntarily. Imagine removing that control and try to imagine the panic, anxiety and emotion that will ensue. In the shadows when the pain zeniths, thoughts of life wither and decay, and in the jaws of that great beast I scream and claw at my head in a relentless and futile pursuit of relief.
With storms, there are rain showers, thunderstorms, tornados of massive destruction, but they are all miniscule in comparison to hurricanes. So too my headaches can reach levels beyond comprehension where my mind begins to be pulled from my body like a beating heart on a pagan altar. Like storms too, time is the only remedy of consistent value to reset balance. Eventually it subsides. Color and light come back into the world slowly, and my eyes look out in confusion and disillusionment. An odd sense of oneness weighs itself over my chest and with it the feeling of having shed another layer of skin. It is a life of continual death and rebirth, and then the cycle goes on.
Now I must point out how long it has taken me to piece together what I have written so far. The conjugation of so many emotions, events and battles into a beginning was always the most daunting of tasks in this endeavor. It took me over 9 months to originally finish this Prologue in the year 2011. In subsequent years it served a secondary function, as being given to healthcare providers who needed to understand me. I was able to start seeing a dentist again and remove the bile on my teeth. For years I didn’t know how to begin until one moment in pain the words came to me, in deciding to describe that moment and begin, This is the end. It was in some sense an ending of living with a disease I neither knew how to communicate nor understood with spiritual clarity, but it was also an ending of a previous attempt to write this book. Some two hundred pages I had amassed over a few years were now completely thrown out. Then more methodically, I would write in moments of clarity and at levels of pain where I could remain calm, until the pain would occasionally slow progress to spending hours over a single paragraph at the end of a writing session. Now it is 12 years later, and I am still writing and rewriting in similar conditions, only it is nearly complete. Disability inhibits but can also define what types of happiness can be known and however burdened, writing has provided the only source of true happiness I have come to know.
I have seen and endured many great and terrible things, and I only hope that through words, there is a portal into the worlds I have traveled. I have segmented this memoir into four parts, each centering on different themes and periods of my life. A Migraine in the Light, the early life of my disease as a teenager and the loss of my normal life. An Odyssey of the Mind, the first decade and the transformation into an absurd existence and the psychological torment of deep time. The Long Way Home, the second decade filled with decay, the endeavor of writing in pain and my attempts to claw my way back into a new life. Finally, The White Tower, my ultimate quest and goal, without which my life and writing would have been abandoned ages ago.
