Living with CFS: the box story

A short story, written and told from the inside of a very small box.

Things were really going along quite nicely. Normal as normal can get at the very least, and oftentimes I would say things were much better than normal. I particularly loved my dog when I was a child, and we'd explore the dry yellowed hilltops behind my house together.

Middle school was good. I had a best friend named Amber which was wonderfully uncanny. There really are few things in life that are as special as your best friend in 7th grade. That person knows absolutely everything about you and you do her, and you never even are struck with the wondering if someone is going to be there to have your back or hear your story because you have a best friend who is all of that and more.

High school was mostly storybook. I was on the drill team and my boyfriend was the drum major not to mention an icon of apple pie. John Baker, with the blond hair, the blue eyes and the white picket fence to prove it. I got good grades, and school was easy enough.

College was amazing. I was surrounded by all of these incredible minds and kind hearts, silent snow falls and dance classes through the changing seasons. We took ice skating classes and camped in below freezing weather in the woods. Graduation came and then the exploration of career opportunities. I couldn't decide between doctor or dancer so I was doing a lot of both. I was in love with life.

It was one year after graduation when I was somehow approached by someone lugging behind them a hefty 2 foot by 2 foot box."I'm terribly sorry," I was informed,"but you will have to live in this box from now on."

While being very apologetic, this person made it absolutely clear that there were no other options. I left my backpack leaning up against a tree and stepped into the box. It was much too warm and much too small. I had to tuck my head down tightly for the lid to fit and then it was sealed, I was totally and completely sealed in.

The disorientation was overwhelming. What was I doing in here? How was I going to make it to rehearsal and class? It was hot and I felt feverish. My legs and back began to cramp. The more I tried to move about, the more exhausted I became. I'd had pneumonia previous to this life in a box and shortly after, my cough came back. I would cough all day and then through the night, my box a mess of robutussin and kleenex. I coughed so much I had to go to the emergency room. "Your rib is broken but there is not much we can do about that," is what the doctor told me. "As for the box, well, we don't address that sort of thing here."

I had no idea what that meant, except that I wasn't going to get any help. Meanwhile, living in this box wasn't what it sounds. It shuddered and shook like an angry beehive nearly all the time and had violent temperature fluctuations. I'd be sweating one moment and then visually turn blue with chill. It felt as if it was tied to a roller coaster and I would cry out in pain from all of the diarrhea and nausea, which would, of course, just restart the coughing.

My parents were horrifically concerned. Why was I in there and who was going to get me out? Nobody seemed to hear our desperate pleas for help. Other people pretended that there was no box. They'd invite me salsa dancing and then say, "Oh, you're still not feeling well? Call me when you're better then." My heart beat out the words loneliness and despair.

I tried to keep my spirits up. I'd draw on the walls and continued to roll my ankles 50 times in each direction every day, so that they wouldn't be too de-conditioned when I was out of there and ready to get back to dancing. My ankles were always my weak point. I stopped doing that after about four years.

I learned to knit and crochet, draw and paint. I became very sensitive to light, so I'd often turn off the lights and choreograph in my head. The studio in my mind was huge and softly lit by the sun. I was a stronger dancer in that studio than I had ever been in any other. I spent a lot of time there.

And that was how it was for me, pressed in a box that was slightly smaller than I was. I lived there for about 6 years with the medical diagnosis: cramped lifestyle syndrome, not otherwise specified. We were in and out the doors of hundreds of doctors, healers, shamans, anyone who claimed they could do anything, practically. I could hear the whispers as we left the doctor offices , "She really needs to try harder. Perhaps she's trying to get attention or needs to see a psychiatrist." The alternative healers were telling me things like, "I think you may be dying." I wasn't sure which was worse.

I finally found a wonderful doctor who refused to give up. The first time I walked into her office she looked at me and said, "Good Lord, you are living in the tiniest box I have ever seen. You're not the only one, you know." I stared back at her, shocked. She tested me for everything. I did not test abnormal in any way, but my life was completely different in every way.

One day, there was the wheeze. It was around the 6 year mark that my marvelous doctor heard the tiniest of wheezes in my left lung. Off to the pulmonologist we went. He, too, noted the constraints of the box. "How is it that you are you surviving in there?" he asked. "I don't know if I am," I replied.

More tests. Finally, it came back that my lungs were as big as those of an Olympic swimmer, making my breathing tests look normal, but with the slightest contact with any kind of allergen, they would tighten up, hardly allowing me to breathe. Which allergens? The allergy doctor said that my entire back swelled up like a giant welt during the test. I was basically allergic to the planet, or at the very least, to most of California. I was put on the highest dosage of every allergy and asthma medication available.

Slower than a sloth, I began to feel a little more space in the box. I could untangle my legs just a bit and my brain didn't feel like it had quite so much lint in it all the time. I decided to take a class at a local graduate school. I would bring a pillow and curl up in the corner of the room. I often left class early or didn't go at all. If I got overtired the box would clamp down tight around me. My fever would soar and the pain and cramping were unbearable.

Over the next four years, the box gave me slowly enough space to work part-time, live on my own and take care of myself. I even started roller blading and jogging a bit. Jogging surprised me since I never liked to jog. So why did I do it? Because I could, and every time I did, it felt like a miracle was taking place. As long as I remained hyper-vigilant of the space I was allowed, I did all right. If I tried for more room, say a dance class or something, the box would shrink up and seal me in its cement cage.

I learned the intricate rules and ways of that box in such strategic detail, that I was able to travel alone, and so I did that, too. It wouldn't tolerate crossing time zones, so I traveled my skinny strip of the planet and learned Spanish, which was the gateway into the beautiful and bright world of Latin America. I fell in love with Ecuadorian food, the coast of Costa Rica, and even a Mexican man.

In 2007, 12 years after the start of my illness the relapse began. In the six years that I had been granted a bit more space, I had finished graduate school, bought a house, become a licensed therapist, was working in the schools and running a private practice. Perhaps, it was too much. Maybe it was the stress of moving. No one will ever know, but three weeks into working with the high school I called in sick and never went back. This time, the box shrunk in tighter than a shoe box.

I had migraines that spanned days on end. I couldn't tolerate and kind of sensory stimulus and so I lived in silent, painful, darkness. My mind was so clouded I couldn't remember which line was for my name on a check. Sometimes, I was too tired to pee or roll over. I had diarrhea every day for 18 months straight and most days my body would convulse for up to an hour. I woke up every morning feeling that I had been electrocuted and beaten by clubs.

I can't write anymore.The thought of what came next catches my breath. All I can say is that things got infinitely worse. Worse than anything I could ever have imagined - a constant flow of paramedics, waking in the ICU, dissociative drug induced suicide attempts. The hospital became my second home, and the illness rages on in this body.

What I can tell you though, is that in this tiny box, I have invested all I have and all I am into carving out somewhere through which the sun can reach me. With a lot of help and love, I am participating in the magical transformation of my suburban yard into an urban farm, bustling with chickens, miniature goats, and seeds, pressing their way to the sun. Fresh eggs, vegetables, homemade feta one day - I'm trying to create a home of health and hope.

I am also converting my home into a shared space for other CFSer's. This idea has been a commonly discussed fantasy - a place where we can come together, share resources and support, live in community despite a disease that does its best to demand isolation. To that, I say, it's time remodel and make space for others to come and share this home. We are sick; we are not defeated. I dream it will become a place of comfort for many. 

I spend a good deal of time on this blessed portal to the world, the internet, trying to advocate for ME/CFS awareness in the world, meanwhile, promoting my small business selling home hatched chicks. Life gives you what it gives you; nobody gets all the good days. As the sun finds its way through the blinds, I slowly wake up into each day with hope in my heart. For me, it's about gathering up the broken bits of shell and dried up kelp and continuing to build castles, one grain at a time.