The White Noise that Won't Fade Away

I live each day with a rotten reality: I will have pain every waking moment until the day I die.

Until they put me in the crematory and reduce me to a five-pound cardboard box of ashes, I will always be in pain. I’ve known this for a long time, but somehow putting it on paper makes it more real. And a little more frightening.

Rheumatoid arthritis cleaned my clock – plain and simple. When it made its arrival my fourth grade year, my disease spread like wildfire, decimating joints from head to toe. By the time I graduated from high school, I had both shoulders and both hips replaced. Both ankles were permanently fused in place. My hands and feet were destroyed.

From the moment of my diagnosis, I battled not just physical pain but also anxiety and depression. I didn’t know that’s what my emotional suffering was called, or that it was linked to fear of my own mortality and anguish at my body’s disintegration. But I certainly understood what it meant to live in a constant state of fear. Even everyday things like meeting new people made me sick with dread. My finger joints were swollen and inflamed. If someone grabbed my hand to shake it, my knees nearly buckled from the pain. My stomach knotted when I knew I had to climb stairs, taxing my already painful knees and ankles. I held a bottomless pit of despair inside me which I tried time and time again to blot out.

The domino effect of the RA’s destruction was more than any kid could be expected to cope with. Yet no one – no medical professional of any stripe – ever suggested to my parents that I could benefit from talk therapy or even pain management skills. That’s astonishing given that folks in the health professions have long been aware that living with chronic pain makes someone susceptible to depression.

The reality is that virtually all forms of arthritis bring chronic pain and are incurable. They attack, destroy and stay put until they’re good and ready to depart. My disease departed when I was in my early twenties. Although I’ve not had any active RA since Wham! was in the Billboard Hot 100, the damage to my natural joints has been devastating and permanent. I still have to depend on those joints every day to pull on a shirt, walk, stand up from a chair -- anything requiring movement. Even the gentlest of activity taxes joints that have been weakened from the damage done.

It’s like a wooden house whose interior support beams have been chewed through by termites. The termite swarm may depart, never to return. Yet at any time, the slightest stress on the damaged and weakened support beams may cause parts of the house to come crashing down.

Most days, my pain is like white noise. It remains at a level which I can mostly tune out. But some days the pain ratchets up. Like Glenn Close’s character in Fatal Attraction, it will not be ignored.  

I do not write this blog post to elicit pity. I write it out of solidarity with anyone else who must live each day with a painful, irreversible reality. I write it for those who wake up each day, put their feet on the floor and move forward even when they’d rather crawl back in bed and pull the covers over their heads. I write it for those who must accept what seems like it cannot be accepted.

You are stronger than you could ever imagine.

AN OPEN LETTER TO CTHULHU

Dear Cthulhu:

Greetings, Great Old One! Hope I didn’t catch you at a bad time, but I sort of felt like this couldn’t wait. You see, I have a concern I’m hoping you can address.

Some of us pathetic creatures to whom you are malignantly indifferent, i.e. human beings, get around in wheeled contraptions. Most of the time, we manage fine, despite the roadblocks – broken sidewalks, lack of curb ramps, out-of-service elevators -- thrown our way. In fact, if the built environment was a bit more inclusive, wheeling around wouldn’t be such a big deal. So you can rest easy; I’m not asking you to place your prodigious claws on me and heal me like some sweaty tent evangelist in a bad toupee.

No, I’m writing to you for a very different reason. After years of research, including countless hours spent in musty-smelling antiquarian book shops, I discovered an ancient jungle temple dedicated exclusively to you. Imagine my jubilation when I discovered a place here on lowly Earth where I might feel a connection to you. Why, the world around me became tinted with a colour out of space!

I put my life on hold, dedicating my every thought, my every ounce of energy to reaching that holy place. I made the month-long journey to the temple on the back of a flatulent donkey, guided by little more than a map in Esperanto and a Garmin watch.

I shall never forget the day I caught sight of that temple’s Cyclopean walls, eerily hidden in an eldritch shadow out of time. Why, I cried out to Yog-Sothoth with joy! I reached inside my Miskatonic University tote bag and took out my inflatable beard (see attached photo.) But then, imagine my despair when I reached the temple’s entrance.

The dang thing has steps!

After all my time, energy and devotion, I was excluded from entering, unable to gaze at the high altar or sacrifice a goat or even check out the clearance table in the adjoining gift shop! Is there nothing that can be done?

Of course I see the paradox inherent in the situation: you have infinite powers yet total indifference to my plight. Still, I hope that you might pull a few strings and get a ramp installed. It’s not asking much, really. In fact, you’ll even earn yourself a tax credit that’s nothing to sneeze at.

Until then, I shall wait in my jungle lean-to, the donkey and swarms of unspeakably huge bugs my only companions.

Yours truly,

A humble daughter of Dagon

THE MAGICAL JOYS OF SUMMER

The summer just before I turned eight years old was magical. Many mornings I awoke to the shimmery song of cicadas, the background music of Cleveland summers. Our house was on a street that had been developed for years, but just a block away was several miles of woods. Within a year or two it would sprout tract houses like mushrooms. Until then, it was my private nature preserve.

I spent many days divining careful paths among the trees, stepping over fallen branches, enchanted by the oblique angle of sunbeams through the canopy. My dad had taught me basics about botany and bugs, showed me where to look for little treasures. Green May apples grew under bowed leaves near the forest floor. Spider webs glistened with dew.  An overturned log would reveal a world of grubs, worms and scurrying wood lice. I would find sassafras trees, crush a few of their hand-shaped leaves between my fingers and drink in the earthy smell of tea.

In June, I went with my dad to city hall to buy a pool pass. A functionary upsold us on a season pass for the whole family for $40. My dad went for it, and a few minutes later, I was holding a warm laminated piece of pink cardboard. It was my ticket to unlimited admissions to the public pool at the end of our street. Although my sister and brother went just a few times, and my parents never went, my dad more than got his money’s worth from me alone.

I often went to the pool three times a day. After my morning swim class, I came home for lunch and returned in time for the 1pm opening bell. With pool pass pinned to my towel, I’d park my bike in the rack in the parking lot, and sprint into the girls’ bathroom (labeled “Gulls”; the boys’ was labeled “Buoys”) where I’d pretend to take the required pre-swim shower.

Next order of business to was to stake out a claim with my towel. Cement or grass was the choice; I almost always chose cement. Although I disliked having to exit the pool during the obligatory 20-minute adult swim each hour, I cherished stretching out on my belly on the hot pavement. The heat would immediately vaporize the droplets off my skin, filling my body with a warm, relaxing buzz like the feeling I would later get from a shot of whiskey.

My friends and I made up crazy underwater games, such as charades, seeing who could scream the loudest, and striking fashion poses. We always opened our eyes underwater and never wore goggles, nose plugs or earplugs. Such things were for sissies and losers and thus out of the question. Our hard line on this issue meant we’d return home from the pool with blood-red eyes stinging from chlorine and droplets of water temporarily obstructing our hearing.

Evenings at the pool were my favorite time. Fewer people meant shorter lines at the slide and boards, and more room to myself. As twilight began tingeing the sky with pastel pink and periwinkle, the underwater lights came on. This was the time for floating languorously on my back, gazing skyward. What would it feel like, I wondered, to ascend like the Apollo astronauts to the moon? I had savored the chewy, chocolate space sticks they ate aboard Skylab and drunk many glasses of Tang. I’d assembled a tiny toy moon rover, powered by twisting a rubber band, from a box of Cheerios. But what would it feel like if the sky was literally no longer the limit? 

When the final bell signaled closing time, my exhausted legs could barely lift me up the ladder. I felt like I’d landed on Jupiter and weighed 1,000 pounds. My three-minute bike ride home seemed infinitely long, the whole world cast in languid slow motion.