Category Archives: Uncategorized

Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

February 17th, 2073.

Everything was eerily calm. Aside from a few fiery crashed planes and the last of the human-powered trains derailing, the world was quiet. Too quiet, except for hungry dogs with full bladders barking inside suddenly empty houses.

Traffic lights changed from yellow to red, red to green, then yellow to red again. Clock towers struck 9:00 AM and the Times Square marquee scrolled unchanging stock market shares. Swing sets swung and flags unfurled in the breeze.

This wasn’t the post-apocalypse sci-fi anyone had read as a teenager.

People had simply vanished. Poof.

The dark green fog, Green Evanescence, had taken every human with it.

Almost every human. Continue reading Ankylosing Spondylitis Eradicated? A Post-Apocalyptic Fantasy Called GreenEva

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Learning How to Fly Again

When I was diagnosed with ankylosing spondylitis my life flipped upside down. It was as if I was born into a new body; one that I never imagined could exist. I was a baby and everything was new again. But not exciting. It was new and scary. And my life is still upside down.

I still remember the feeling of intentionally exhausting myself playing soccer or running or dancing all night, then waking up happily sore the following morning. This is not what my body feels now. Now, no matter what I do the day before – whether I just went to work, cooked, gardened, or even just stayed at home “resting” – my body reacts as if someone is constantly sticking pins into my voodoo doll and twisting them deeper and deeper into my bones and joints.  My muscles are just trying to keep up. Continue reading Learning How to Fly Again

I Love You, Terrorist

I love you, terrorist.

You have a name, like I do.

You were once a child. We both were, once.

Perhaps we’ve shared the same joy that comes from riding a bicycle. We’ve shared the same flavors of favorite foods, the beauty of sunsets, the feeling of joy while playing a fun game.

We’re both human. We share the same stars, moon, sun, and earth. Our bodies work in much the same way.  Food and water nourishes us and sleep invigorates us.

We both have parents and families that taught us how to discern right from wrong until we grew old enough to explore different sets of ideas and ways of thinking.

There are people in our lives we love so deeply whose losses we would grieve terribly should anything happen to them. Perhaps you’ve known grief at a young age, like me.

We are more alike than we are different. Continue reading I Love You, Terrorist

The Time I Began Crying in a Pool Full of Nude People & How It Led Me to Watsu

Last summer I went to Sierra Hot Springs in Sierraville, CA for a couple days with my then-boyfriend, now close friend, Mel Melvin. I expected a pleasant time in the natural hot pools but I did not expect the shock I experienced after a few minutes in the hottest pool there (105-110º Fahrenheit). At first I was a bit unnerved because I thought my body was going numb from the intense heat. It took many minutes to realize what I was experiencing was a lack of pain, or possibly the sensation of no pain at all.

Pain is my reality 24/7; you take it away and I don’t know how to understand what I’m feeling (or not feeling, as was the case). For 13 years my body had known constant pain in some shape or form or area in my body (now going on 15 years). That’s a big part of my life with ankylosing spondylitis. As soon as I realized that what I was experiencing was a lack of pain I began sobbing. I had a break down. I didn’t believe it was possible to be pain-free, ever, for any amount of time. I cannot begin to describe what I was feeling but it was not happiness or joy. The space my physical pain usually occupies was replaced with profound emotions: grief, anger, sadness, confusion, embarrassment, fear, anxiety; and the unrelenting, pulsing, nagging reality that this was temporary. With paradoxical anger I felt that my pain had been stolen from me. I felt naked (okay, I was). I wanted it back so I could escape this torture. Most people consider torture to be painful or threatening, but my torture is the faux-promise of being pain-free.

Please, let me back into my shell of pain, I know how to live in this body because it’s mine.

I can’t believe I just said that.

This sick thought left a bitter taste in my mouth as I remembered the many times I have told people I wish I could experience being in a healthy body for one day.  I suddenly felt a profound sense of the unfairness of it all. My body felt like a burden in this blinding cloud of temporary painlessness. I felt cheated by life and by my body. I desperately wanted to scream, to sob out loud, to tell everyone that their bodies are so perfect compared to mine.  But I couldn’t, and didn’t, because I was in a silent pool. My tears flowed freely. I convulsed silently. I did not want to cause a scene. I allowed myself to be invisible. I tried to ignore the dawning realization that I would never experience this again in the same way.  No other waters would ever be able to deliver such a surprise and shock of being suddenly pain-free. I would be too aware of my body to be caught off-guard again. I freaked out in the politest way possible; I silently got out of one pool and into another.

On a realistic level I was also afraid of injuring myself. My body suddenly felt limber again, lively, agile, able. I wanted to do the difficult yoga moves and stretches I’d been able to do years before. I wanted to go running. I wanted to do it while I had this sudden, fleeting freedom.  I imagined an hourglass on the horizon, quickly running out of sand, quickly measuring the time I had. I was acutely aware that overdoing it could cause me to spasm through the night and send me into a flare, leaving me in bed for an indeterminate amount of time. I was aware that if I did everything I physically felt I could do during my brief escape from the prison of my body I would be doing more damage than good. Because I have the mind of an athlete and my default is to push myself I knew I had to be extremely careful. I knew I had to limit myself and that angered and saddened me more than anything. This was a wicked test.

Many minutes, maybe half an hour passed, before I was finally able to speak again. It was impossible to describe for Mel what I was feeling. I mumbled words, made gestures, touched the places on my body that are usually so full of pain, then sunk into myself and looked down at the surface of the water. I was suddenly shy and afraid, yet oddly hopeful I would wake up out of this dream – or nightmare. Somehow I managed to communicate that I just needed to be held and to cry. I was overwhelmed and knew there was no way to begin to describe what was going on in my body and in my head.  Eventually I explained as well as I could, but I understood on a very basic level that admitting to Mel that I would feel more comfortable when I got my pain back – that I was more scared of the lack of pain than I am of the familiarity of pain – was a concept he could not understand as someone without chronic pain.

It was only later, when I saw a sign about Watsu massage and a person receiving a Watsu massage, that I felt some hope. A woman was submerged almost completely in the water with flotation devices supporting her head, arms, and legs while another woman massaged, moved, and stretched her body gently, almost like a dance. I was transfixed.  I stared as unobtrusively as I could. I imagined what it would be like for my body to completely relax in the warm water, without fear, and be moved about. I wondered what it would be like to be able to allow all my muscles and joints to lose their tension, if even for an hour. To really relax.

Watsu entered my mind many times after that trip. Then, several months ago this year a woman named Jillian emailed me to introduce herself as a Watsu practitioner. She wrote of how she has personal experience with people who have ankylosing spondylitis and wondered how she could be involved with my spondyloarthritis support group. I felt the stars had aligned. I was overjoyed while she was surprised I had even heard of Watsu.

I had my first ever Watsu session with Jillian yesterday. It was like dancing. It was like being in a womb. It was like being in the loving arms of a parent or grandparent. I meditated. I breathed.  I trusted. I relaxed. I thought of blog post ideas. I thought of friendships and family. I thought of church and what home is. At some point I felt myself smiling and laughing without knowing why and was completely at peace with it. I still felt the dull ache of pain that is and will always be there for me, but it was masked by my determination to be free for the time I was in that warm, healing water.

 


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The Affordable Care Act is Not Affordable for Me

My previous post, The Work of Being a Professional Patient, needed a second chapter. There’s more to that broken system than simply being an unpaid professional patient.  In addition to the phone calls, meetings, emails – the legwork of managing our healthcare as chronic disease patients – there’s a lot of money involved, and a lot of it flows out of the pockets of people who can’t afford the care they need.

The system is broken.

It is a system designed for healthy people to get catastrophically sick and go from there. A system that punishes people for being sick but provides no support to keep them from getting sick.  Only $251 is spent per capita on public health measures aimed at proactively preventing illness.  The American healthcare system pads the wallets of health insurance and big pharma companies and often doctors and nurses too, then forces patients to do their work for them. America, land of the sick, home of the outsourced labor in our own back yards: people paying corporations a big chunk of their income for the privilege of managing their own healthcare. Privilege is a dangerous word. I’m privileged to be chronically ill and I pay over 10% of my monthly budget on my healthcare premium alone, after the assistance of the federal subsidy intended to keep my rates within my income limits. This does not include my out of pocket expenses on doctor visit copays, prescription copays, over the counter NSAIDs, heating pads, and various treatments to manage side effects of either medication or illness. Continue reading The Affordable Care Act is Not Affordable for Me

The Work of a Professional Patient

I don’t get paid for this but it’s my job.

Ironically, I pay others for the work I do. You may need to read that twice to let it sink in. I pay health insurance companies, doctors, and pharmacists to do a job that I actually do because they don’t – or can’t. Though it’s not on my resume, I’m a Professional Patient. I make the phone calls when I catch the mistakes because no one else has the time. I make the phone calls when my doctor doesn’t know what my other doctor said, even though they share a computer system. I call to make sure my prescription is filled on time. I call to make sure my insurance company will cover a service because it’s not clearly stated in my plan information. I call to challenge billing errors and then I call to follow up at least three times before it’s settled.   Continue reading The Work of a Professional Patient