A Meditation on Chronic Illness

"In the face of pain there are no heroes." - George Orwell

Some of my earliest memories are of numerous and varied hands being placed on my head and torso while faces very near my own would shout in an unknown language, commanding God to heal my body.

This tells you two things about me:

1. I was raised as a Pentecostal: a faith tradition that firmly believes that everything that happened in the biblical book of Acts—such as speaking in tongues, visions and prophecies, casting out demons, and yes, divine healing—are still available for believers to access today.

2. I was very sick as a child.

So during revival meetings and regular Sunday services, as well as the occasional prayer meeting and Bible study, I would be called up to be prayed for.

It was frequently uncomfortable, especially when I was quite young. My frail and weak body brought up to our church’s altar. The clammer of bodies around me. The cloud of perfume and aftershave and sweat and breath mints. The odd feeling of being the passive center of attention. I was expected to just stand there and receive healing; to do nothing but get better. Easy.

I never did get better though.

I was born with a laundry list of ailments that make even me feel like I am exaggerating when I list them. It will suffice to say that I have been sick all of my life. I can’t personally recall a time in my life where I ever felt good physically.

Somewhere around 6 years ago, I started feeling a sharp aching pain throughout the muscles of my body. It felt like the flu. It came with an increasing amount of fatigue and a near constant nausea. That pain and those feelings have not left since.

It turns out I have a rare and degenerative genetic form of arthritis. The pain is constant. Some days it is more mild and manageable. But some days—days like today—the pain is so bad that my whole body has tremors, my speech is slow and stammering, and I can barely move. The pain is so intense that it has already caused me to vomit twice this morning. And that is not uncommon for me on my more high pain days.

And this obviously brings up the question of why God (if there is a God) decided not to heal me. It is a question that I have often asked through a lot of painful and frustrated tears. And there are fun philosophical answers to that question. But at the moment, my mind is pressing on another issue.

Because when I think back on those times of being prayed for at the altar, my discomfort is only marginally from those sensory experiences I listed earlier. Even then I could recognize what was happening as an act of real love and affection. These were good hearted people who sincerely hated the idea that an innocent child was suffering and believed in a God that hated that too and could fix it.

No, what draws my attention at the moment is how bad I would feel on discovering that I had not been healed. There is a flicker of hope on the eyes of people after they have prayed for you. A glimmer of anticipation and excitement to finally witness a miracle. And by remaining sick, I would always douse that hope. I was like the human equivalent of getting socks at Christmas.

And this extends way past the church and Christian culture. People that love us will always want to fix us. Because they love us and don’t like powerlessly playing audience to our suffering, they will tell us what worked for their sister-in-law’s cousin’s friend, they will lay hands on us and plead for God’s healing power to do its holy work, they will explain to us that this is happening because of some toxicity in our food or air. They will buy us a bunch of essential oils and maybe a humidifier and some sacred rocks.  And that’s all beautiful, really it is, because it so clearly comes from a real place of love and compassion. I am grateful for that love and attention.

But I also feel like a disappointment a lot of the time. If laying hands on someone cured them of their ear infection, why didn’t it work for me? If going paleo helped your uncle’s high school gym coach, why do I not feel better after eating nothing but bacon for six months? Is there something wrong with me?

I know that I am not alone in that feeling. Even though we have come an awful long way in our understanding of how the body works (or doesn’t work, in some cases) we still have a tendency to view pain and illness as a metaphor. It says something about us who are suffering.

Even the word pain itself comes from the Latin word poena which means “punishment for an offense.” So even though I know better, I still kind of totally believe that my poor health is my fault. It is my lack of faith, my stress levels and mental health, my inconsistency in practicing yoga and eating acacia berries and whatever else that has caused me to feel the way that I do. And if I just did more, if I were just a better person, I would feel better too.  

A lot of us that suffer just go through our day pretending like we are totally fine. We hide our pain because we don’t like seeing it reflected on our loved one’s faces. We don’t want to be reduced to just a problem to be fixed. Some of us know that we will never be fixed. Some of us know there is nothing to be fixed at all.

Which is why I did not want to start the discussing of pain and suffering by going directly to the philosophical and religious responses to it. Because to a degree they don’t matter. Those arguments, in my experience, are an awful lot like breath mints: they are usually more for the benefit of the giver than the receiver. Not to say that these theodicies can’t provide some intellectual and emotional comfort and solace to those suffering, because I do think they can (whether or not they are true). But what they don't do is actually make the pain stop.

And for those of us who are in the midst of suffering, who are right now engulfed in physical or emotional pain or illness, being told that what we are experiencing is just the price of admission for having free will might seem like cold comfort. It does for me, anyway.

So today, because I need to hear it. I am just going to stop and honor those of us who are in constant suffering. Whether it be through chronic pain, illness, depression, anxiety, any kind of disability, or anything else that I didn’t think to mention.

I want to pull you up onto the stage, not so we can beseech a higher power for healing or otherwise try to fix you. Not so we can hold you up as example of courage or resilience, as if we are noble martyrs that have chosen this life. I just want to hug you and look you in the eye and tell you it is okay.

Well, maybe not that it’s okay. It’s very not ok. No one should experience what you do. But you are okay. You are valuable and beautiful and powerful and so very worthy of love, no matter what your limitations are.

I want to tell you it’s okay that you had to cancel plans. And that It’s okay to tell the people wanting to care for you exactly what you do and do not need. And if you need to occasionally ignore your ultra restrictive diet and mindfulness exercises so as to spend a day in bed watching Firefly and eating maple and bacon donuts, just because you need a little bit of comfort in your life, that’s okay too. It’s what I am going to do today.

And for those of you who right now love someone who is suffering. I would encourage you to take a moment to just sit with us. There is a time and a place for helping us fight against whatever dragon we are facing. There is also a time and a place to make sure that we aren’t wallowing in despair and are not letting our suffering dominate our lives. All of that is important and is very appreciated. But it is also important to just hang out with us and hold us and comfort us and bring us donuts. It is easy when in pain to forget who you are, especially when that pain goes on for years. Remind us of ourselves. Remind us that we are more than our symptoms.

There are a lot of lessons my pain has taught me. More will be revealed in time. But today, I was in dire need of a reminder that my suffering does not make me broken or worthless. Quite the contrary.

I needed to remind myself that I am valuable and beautiful and powerful and so very loveable.

And maybe it’s prophetic, or maybe it’s just common sense, but I strongly suspect that someone out there needed to hear this today too. If that’s you. Love yourself today. None of this is your fault.