What it’s like to live with chronic pain and illness

Sickness and pain are universal experiences that are part of being human. But most people experience them as something passing that happens every now and then over a lifetime. But others like myself experience it as a daily fact of life that changes in degree but is always present. Among the challenges that plague those of us who live with chronic pain and illness, one of the most soul crushing is the pressure to stay silent and not express the suffering we feel. Social norms and responsibilities, the desire to be useful and productive, to have fun and be positive around others — these pressures cause us to practice a brutal yet banally systematic suppression of negative emotion. It’s accepted to complain to your friends when you break your leg or get the flu. But when you are suffering every day, you cannot complain out of fear of burdening people, casting a shadow over their happiness. No one wants to be seen as broken. This emotional self-mutilation hurts, too, so this is my attempt to practice openness.

Like anyone else, chronically ill people have good days and bad days. But when you have chronic pain or illness, “good” days are better described as “less bad” days. This means that if you ask a chronically ill person if they are feeling better, and they say “yes, thank you,” this doesn’t mean they are feeling healthy or well in the sense that you understand it. In most cases, it means they are back to some kind of status quo where they are somewhat able to continue managing their daily life. They are at a point where they can muster the strength to hide their pain (again).  They may be feeling better, but they are still hurting.

The longer a person suffers, the longer they practice emotional self-suppression. It’s a refined art and an expertise that is completely invisible to the outside world. In fact, sometimes chronic pain sufferers may be accused of being weak or overly sensitive: we might sometimes have more trouble coping with physical or emotional stress than the average person. However, this is because getting up in the morning and going about simple daily activities can be a monumental challenge in itself. That’s why it is so hurtful and depressing when loved ones or doctors are frustrated and disappointed with us: we wish our daily triumphs were recognized, but usually it’s a saga that plays out privately in our own minds.

While a lifetime of suffering trains chronic patients to become experts in hiding pain and acting as if nothing is wrong, no length of illness enables us to feel the pain less or to get used to it. Pain is pain, and the body hurts whether you experience it for a moment or for a decade.

Chronic pain and illness often means having a tumultuous love/hate relationship with life. My bad days often lead me to question the value of living, but my good days fill me with a kind of hope and joy that I think it’s hard to understand if you are not constantly in pain. It’s hard to describe the glorious feeling that comes on days when we can think, I’m hurting like hell, but today it’s okay, I can get through this. We appreciate the little things in life very deeply because they are often fleeting — here now and gone in a flash. Simple things like breathing, moving, hugging, become precious. Pain is our enemy, but also our teacher, our secret self, lodged in a corner of our heart like sand in an oyster.

Death may often be on our minds, and we may refuse to live and work as though it were a distant fiction that only the elderly need consider. If this is the case, please accept our choices. Not everyone is cut out for the 9 to 5 corporate job; the spouse, two kids, financial responsibility; — nor is everyone cut out to party all night, jump out of airplanes, go hike across a continent. Not everyone can muster the will and energy to live the life that seems normal, healthy, meaningful, and respectable to those around them.

Instead, sometimes we have to cry, let you down, break plans and promises; make unexpected choices, say socially inappropriate things at the moment the feeling rises; sometimes we have to live a life that looks a bit ugly and haphazard from the outside, but if you are flexible and open, listen and accept whatever we need to do to get through the pain and come out on the other side, you help us to live authentically: a fully, simply human spirit, who conquers the world on good days.

 

 

 

 

 

 

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Faithless.

terrible lie.
my head is filled with disease.
my skin is begging you please.
i’m on my hands and knees.
i want so much to believe.

-Nine Inch Nails

I was inspired by a friend’s writing about the development of her faith to write about the loss of my own.

At age 12, I was a devout believer and child of God. My belief in Christianity was like my belief in the air I breathed – I couldn’t see it, but I knew it was there, truth as solid as the ground I walked on. I prayed constantly, read scripture, and every time I looked at the sky I saw heaven. With all that came a strict lifestyle and frame of mind – wholehearted pledges of womanly modesty and grace until the day I die, and total chastity until I married the God-fearing man that had he had already chosen for me the day I was born. And of course, unwavering fealty to the Republican party – which I knew nothing about, except it was the right one and the godly one. I believed it all like I believed in gravity.

At age 26, all that is simply gone. A gaping hole that’s been filled with odds and ends that keep the weather out until I hardly notice it’s there. I don’t think about God or Jesus very often – this thing, this person who used to be my daily companion, friend, father, disciplinarian, punisher, captor, savior. I loved him back them, but after all these years, I don’t miss him very much.

How does something so important, so central to a person’s identity and worldview just disappear? Do you just wake up one day and it’s gone, and you simply go on living your life as a smug, enlightened, well-adjusted nonbeliever without missing a beat?

I can’t speak for anyone else, but I know for me and for many others with similar upbringings, losing your faith isn’t like getting a tooth pulled. It’s like someone reaching into your chest and cutting out a piece of your still-beating heart, you grasp and flail and struggle, you almost bleed to death but somehow you survive and bit by bit, day by day, you fight pain and sickness until one day you are whole again.

When I was 12, my grandfather suddenly got very ill with pancreatic cancer.

I often stayed with my grandparents during school vacations or on weekends. He was a Korean War veteran and didn’t talk too much, but used to read the comics — or the “funnies” as we called them — every Sunday morning with a cup of black coffee. Although he was quiet and reserved, my grandfather volunteered as an usher for his church; he wore a big smile with his brown tweed suit as he greeted the churchgoers at the door with a welcoming handshake and a pamphlet for the day’s message.

When he got ill, I was thrown into a mire of anxiety and confusion. I thought maybe God made a mistake, since my grandfather wasn’t old enough to die, or that’s what I thought anyways. Or maybe God was just testing to see how hard I would pray. I decided it was the latter: God definitely wanted me to pray. So pray I did, from sunup to sunset, while I went to school, while I did my homework. I scribbled hundreds of little prayers in my notebook. But there he was still in the hospital, yellow with jaundice. I hardly recognized him.

So I prayed harder. Perhaps this case was too great for me to handle on my own. It required Prayer 2.0. I headed to the World Wide Web and found a Christian forum for prayer requests. There I told the Christian netizens about my grandfather’s plight and requested prayers. I collected hundreds of them and bound them into a little book. My grandfather smiled. I wonder if he believed as strongly as I did that this book would save him. I thought, if God wouldn’t grant the prayer of just one person maybe he would listen to hundreds praying for the same thing.

At the funeral, I felt very hollow and old. I couldn’t understand why God would let my grandfather die like that. Deep inside I was angry. It was the first major crack in my unwavering faith in Jesus, but I still believed. In the end I thought, only God knows why he did that, and it’s not for me to judge. After all, death comes to everyone in its time.

***

One crack down. A million little cracks were to come. A few stand out in my memory.

1. A torrent of books.

As a child I devoured books with the same enthusiasm that my grandfather ate apple pie, and once I got started with any series, topic, or philosophical line of reasoning, I couldn’t stop. My best friend had the same thirst for the printed page and we exchanged endless texts and thoughts about life, the universe, and everything.

There are enough atheist blogs discussing the philosophical problems of Christianity and I don’t want this to be one of them.

Suffice it to say, after reading hundreds of books including the holy books of several different religions, I became very, very confused and lost. The preacher’s words coming from the pulpit no longer sounded so sound. It seemed to me that he was corralling the congregation into a boat full of holes and pretending they weren’t there. I talked to the pastor often about these holes, hoping desperately he had the answers, but I was never satisfied.

2. My father’s repeated vacations from sanity; my parents’ tight ship.

I told this story in detail in another post. My father suffers from bipolar disorder and there were a number of very traumatic experiences in which he developed psychotic delusions that he was a prophet sent by god and the end times were near. During these times, he poured obsessively over scripture, not sleeping day or night, finding patterns, commands, and prophesies. He attempted to execute these in his own life as literally as possible. This resulted in doing a lot of things to terrify me and put himself and others in danger. My days were filled with anxiety – what would he find in the Bible next?

After all this, I became even more sensitive to the literal word of scripture. If my father could interpret it in such awful and terrifying ways, what would I find in my own examination? How was it possible to know what “literal” meant? I dissected scripture myself to the point that seeing it produced deep anxiety and fear. All sureness, confidence, and sense of security in the Word had vanished.

Furthermore, my parents ruled their household strictly based on fundamentalist biblical principles – or at least those they got from their Church and the Republican party. The books they read advocated strict traditional parenting: no boys, parties, rock music, R-rated movies, etc etc. Of course, as a normal teenager, I felt oppressed and restricted. My violations of their rules were never treated as normal trespasses borne out of human curiosity, but rather as moral failures: they cried, screamed at me, warned me of God’s wrath. They saw me as lost and under the hand of the Devil. And I believed it.

3. My abominable sexuality.

I’m bisexual: I am attracted to both women and men. Discovering this fact about myself as a conservative, fundamentalist Christian teenager was one of the most painful things I’ve ever had to live through, and it really shouldn’t have been.

Now I look back in sadness about the torture I went through and put myself through. Most of that is gone – I don’t sit in the bathroom punishing myself anymore for impure thoughts about women. I don’t think homosexuality is a sickness or an abomination anymore.

But at the time, that was my reality: a reality fed to me from my church, my parents’ homophobic rants, high school bullies, and conservative talk radio. I woke up every morning to disgust with myself, I dreamed only of torture and death, and knew I deserved it. I tried to pray and follow god and carry my cross honorably, but the gap kept widening. God became at best far and impersonal, at worst an evil sadist.

4. Physical and mental suffering.

A combination of genes and experience ensured that I grew up neurotic, anxious, and depressed, sometimes so severely I was unable to leave the house.

But on top of this, I developed serious issues with chronic pain due to a skeletal abnormality that left me in pain day and night despite the doctors’ attempts to help me. Sometimes I could hardly think, but also couldn’t sleep either. It was a like a constant drip in the back of my mind so everything was fuzzy. It was hard to connect to friends let alone God.

I tried with all my might to believe it was a part of God’s plan. Or to have faith that he could make me well. A pastor at a friend’s church poured oil on my head while praying for me, hands shaking, voice trembling. I felt nothing. The pain continued. I felt abandoned.

5. Open arms of secular people in college.

After I entered college, I met people that gradually helped me lift a lot of these burdens from my heart – kind, open secular people who weren’t afraid to admit they didn’t believe. Some of them had been raised without religion, but others had lost theirs. Being around them and treated like a respectable, valuable, intelligent person despite my sexuality and my loss of faith opened my eyes. It was the final nail in the coffin: there was love and openness here in my new community. I could see for the first time with clarity how bereft of love and compassion the Christian community I had left had been. I couldn’t go back because I would never survive, so I left, I went forward.

***

Since that time I have identified as an atheist or a person without religion. I’ve been presented with definitions of God that I could say I believe in, but never found any reason to name these concepts “God”, and so I remain atheist.

Although I don’t believe anymore, my upbringing left a “God-shaped hole” in my heart. It’s something I was taught about as a child – that all nonbelievers have a God-shaped hole in their hearts until they fill it with Jesus. But now, I don’t think that’s true at all, except for some ex-Christians like myself. When you are nurtured on something from an early age and your identity forms around it, it can leave a hole when it’s gone. For a while, I struggled with finding meaning in anything. I deeply resented religion for everything I felt it had done to me. Gradually I filled the hole with other things: friendship, love, music, the awe of nature.

I’m not proud of the hatred of religion that I carried with me for years after I became an atheist. It imbued my heart with a prejudice that limited my ability to connect with religious friends and family and was hard to break free from. Through many experiences with truly kind and open religious people since then, I’ve slowly but surely gained a new perspective. I know now that not all religious communities are stifling and punitive like the one I grew up in; there are those that allow people to thrive, create, and grow without shame or fear. And I know, too, that atheism is no panacea for the ills of the world; societal problems like racism and sexism don’t originate in religion, but in the human heart – and man created religion in his own image.

Despite this long journey from a person of religion to a person completely without it, some things haven’t changed. Something I never got rid of, and probably never will, is the never-ending weight of right and wrong, and punishment and sacrifice. It stems from years of obsession over sin and atonement. No matter what I do in life and what ideologies I might subscribe to, I obsess about my own wrongdoing and reflexively try to atone for my sins. I dream of terror and judgement.

My life may be happier now, but deep down, tenets of Christianity are lodged deep inside me like shrapnel covered in thick scar tissue. It’s in my nature.

It’s not leaving me anytime soon.

In My Father’s Shadow

I recently read this article in the Washington Post in which a woman talks about her father’s suicide and refuses to keep her own depression a secret as an adult no matter how scared she feels about talking. The traumatic descriptions of witnessing her father’s depression as a child reminded me of my own father’s struggle with mental illness and the parallels with my own experience. It’s something I’m scared of talking about even though I know how important it is. This is an attempt at writing about something honest in the hope that it will help someone else know they are not alone.

I did not lose my father to mental illness but I came very close. When I was 12 years old, my father had his first psychotic episode. In the year leading up to it, I can remember things got steadily worse. He didn’t sleep normally and yelled a lot, slammed doors and called me names. He was constantly nervous and agitated and his speech became increasingly paranoid, and started selling or giving away our family’s things because “we don’t need them anymore”. The fights between him and my mother were more than usual. At this time, he was at home most of the time writing his dissertation for his PhD. Now I can imagine how much stress he was under but at the time it was just terrifying for me as a child.

This culminated in a full-blown psychotic episode. The first sign I remember was when he was driving me on Tuesday from a piano lesson.  I thought everything was fine until I noticed his driving becoming more reckless than usual. I looked and saw that he was squeezing his eyes shut while driving full-speed with cars all around us. I yelled, “What are you doing?!” and his eyes flew open and we avoided a crash. He told me, “I had to do it. God wants me to prove my faith.” (I should mention that my father is a devout evangelical Christian who believes in the Bible literally, as was I at the time). But I knew at that moment that something was really wrong; this wasn’t normal for my father. My stomach somersaulted in fear the rest of the way home. Luckily we made it home without an accident but my fear of cars persists to this day.

In the following days, things only got worse. There was no more anger like in the months before. A frenetic, divine fervor took its place as my father was drawn deeper and deeper into a delusion that he was chosen as a prophet by god. He went about his divine duties with a sense of dogged purpose. He said with conviction that the apocalypse was coming and the rest of the world had been possessed by Satan. “When you go to school, please don’t make eye contact with anyone. Even the teachers,” he pleaded. “That’s how it spreads. Through the eyes.” One day, he unplugged our refrigerator and my mother couldn’t take it anymore. “You can sell our other things if you want,” she cried, “but don’t sell the refrigerator!” She added, “In case it takes Jesus longer than you think to come back.” He relented.

My grandmother was in the hospital at the time waiting for a hip surgery. We went to visit her and my dad told her, “Don’t get the surgery. Jesus is coming soon. Why bother when you’ll have a new hip in heaven anyways?” There was a look of sadness and confusion in her eyes. Soon after, he removed me from school and kept my mother and I inside the house. “Today Jesus is coming back,” he declared. He raced around the house frenetically in thought about how to prepare. I sat in my room with a hole of utter terror in my stomach. Praying. Could this be real? I was terrified of the End Times and the Final Judgement. How would Jesus judge me? What if he came and took my parents but left me here? And if this wasn’t real, was my dad crazy? Was my religion crazy?

My dad rushed into my room. “You have to come outside with me, now!” he said with a shaking voice. I can’t stand this anymore, I thought. I just can’t. “Why? I don’t want to! Just leave me alone!” I cried. He pulled me into his room and had me sit on his lap. I was angry with him until I saw tears running down his face. “Jesus is coming. Today. You have to believe me.” My mother was watching not knowing what to do. “Please. Just come outside with me. You don’t have to believe me but please do it.” By this time I was crying and filled with utter confusion. I didn’t want to go outside. His voice cracked and tears streamed down. “When Jesus comes, we’ll all go to heaven. And we have to be outside, or else, what if it misses us? I want us to all be together in heaven. Please.” I couldn’t refuse my father’s tearful face. My mother and I followed him outside into the garden.

We stood there. We sat. We paced. Waiting. Wondering if this could be true, or if my dad had lost it. Agonizing about both possibilities. After hours, Jesus still hadn’t come. My mother and I decided to go inside. “He’s not coming today,” we said. “But if he does, I’m sure he won’t forget us,” we reassured him. That day, my father went to our church and climbed to the top of a tower. He was going to jump to prove his faith, but the pastor saw him and called him down. My mother came and talked to the pastor. Together they finally convinced my father to get seen by a professional. “I know it doesn’t seem like you need help and maybe you don’t”, the pastor said. “But it can’t hurt, just in case. Just do it, to make your wife and daughter feel better. They don’t see the things you see, and it’s scaring them.”

So they went to the hospital. I don’t remember where I was at the time but my dad came home seeming a little bit calmer and more tired. They gave him an anti-psychotic medication at the hospital and he had started to question his delusions. They gave him a diagnosis and explained how what we had witnessed correlated with typical symptoms of the illness. I was relieved to have my father back, but an ache lodged itself in my stomach that has never really gone away. I have often wondered how our lives would have been different if he had jumped from the church tower that day.

After the initial episode, my father suffered more throughout the years, as he would periodically stop taking his medication. But these times my mother was prepared and it was never quite as bad or as long as the first one. They continued fighting and my mother often said she wanted a divorce, but my father always said it was against the Bible. I was forbidden to talk about my father’s illness and I was crushed in silent shame and anxiety. And as the traumas of puberty descended on me like an avalanche, I developed a lot of disturbing psychological symptoms myself. After being taken to the hospital for my first panic attack of hundreds, I saw many psychologists and received a variety of diagnoses, but it wasn’t until I was 21 that I was finally diagnosed with the same problem as my father. With the diagnosis came a feeling of relief that comes from knowing truth, but also a deep, cutting dread that I was like my father. After all I felt he put me through, I harbored so much anger and resentment towards him.

Through therapy I learned that I am not my father. My symptoms have never been like his. Although I may have gotten a genetic predisposition towards mental illness from him, how it manifests in me and how I choose to react is my own. Unlike he did, I am very lucky to have friends who I can talk to. Over the years my anger towards my father has softened. I can’t really imagine what it must have been like, being a lone warrior in God’s crusade against evil. Can’t imagine how he felt that day, trying to get us to come outside to wait for Jesus. But I do know that mental illness is very real and powerful.  Artists and musicians have been telling the world about this since forever. Cobain sang,

I’m so happy ’cause today
I’ve found my friends
They’re in my head
And I’m not scared
Light my candles, in a daze
‘Cause I’ve found god

But I hope for a day when not only world-weary artists but also teachers, doctors, stay-at-home moms, biology students, cashiers, waitresses, anyone can speak out about mental illness without fear of judgement and shame. Although I feel anxious even writing this, I’ll post it anyways, for myself and anyone else affected by mental illness. I just want to say: I see your struggle.