Night falls around me like a bitter blanket. The air is hot with pre-summer melancholy and reeks of restlessness. Lying in bed is a game of catch and release— close my eyes and try to catch a few more hours of sleep, and release when the attempts fail.
There are several remedies that can be found for insomnia and a person is expected to simply find the proper prescription. Perhaps it is natural, melatonin supplements or a set routine, or maybe it is found in stronger prescriptions advertised on television like a sure-fire cure. To each sleepless being, it is a matter of picking their remedy, although even then the little tricks, tips, and circular aids will not ensure a good night’s sleep.
The mind will wander as it is left in the darkness. Flickers of streetlights drift beneath the closed blinds of a bedside window, the night light that will chase monsters away. A cat meows just beneath my window, setting my mind on hyperdrive of where it has been. Perhaps he has come meowing for food because his previous owner used to live in the stone-cold house. Maybe he is just lonely walking around past midnight all on his own. I know very little about cats, but I can imagine that even they must get lonely at times because even the most solitary of people crave the occasional contact. One truth remains in my endless array of weary thoughts, stark like letters in all caps on a piece of blank paper— I’m allergic to cats.
Pain is a constant reality in my life; it lingers in the crevices of my daily activities like an itch that you just can’t seem to scratch. You would think that after over two years of severity that I would be used to this by now. The mind has a funny way of handling pain; once it has finally passed, it lets you forget for a while just how bad it is. This is how women can go through labour and then say a few months later that they would consider having another child. The mind has told them that their pain wasn’t as bad as they perceived it to be, and so the idea of doing it again isn’t as intimidating. Constant or chronic pain is different than a singular moment of pain; it keeps you up at night and bed bound during the day. It is the monster tapping on my bedroom window, reminding me that no night light or medication can ever scare it away. Even when the mind does magic and makes the pain seem less excruciating on those rare days when the monster decides to take a nap, it will only return ten-fold because sleep makes a monster hungry.
Sleep. I just want to go to sleep. The monster won’t let me tonight.
Perhaps the cat is too hot outside. It must be better than being too cold. The cold is another villain all in itself. It creeps into the bones like a disease and brings out every hidden ache and agony to the surface. Heat is the sword to fight off the freeze, and it can be applied via a heating pad or heated water bottle. Apply heat to the largest area of pain and try to ignore the cold consuming every other part of the body.
While I was at school in Nebraska, there was a little kitten that was crying outside my dormitory in the snow. It was a winter night in mid-January and the temperature was dropping as night fell. A blizzard had come through just a few days earlier and painted the entire campus in a thick coat of pure white, like a blanket when tucked into bed. It was beautiful to see, but for the little kitten, it posed as a monster. Winter was writing out the little cat’s ending and it wasn’t going to be a storybook one.
“We need to somehow get it to come to us,” Anika, my best friend from high school and roommate at the time, suggested.
“I know, but how? Also, once we lure it, we shouldn’t pick it up if it has some sort of sickness. The semester just started. You can’t get rabies,” I replied, rubbing my arms as the cold turned my words into puffs of smoke.
“I’ll go grab a blanket from the room. Just try and keep the kitten from leaving.”
“How do I do that?”
“I don’t know. Just do it!” Anika called behind her. She was already running into the warmth of the building.
By the time Anika had returned I had managed to grab another girl we had known in high school as she was heading inside. Lindsey had been feeding the kitten for weeks, but had never managed to get close enough to rescue it. He always ran away. Snow had begun to fall again, coating our clothes and hair. It took a handful of cat food, a blanket, and three girls to catch the little kitten and sneak him into the building. From there, we had to plan to get him to a safe shelter before getting caught with a cat in the room. Lindsey successfully recruited a friend who made a space for the little black ball of fur in the corner of her dorm room. In the morning, there was a text from a girl I had barely known in high school; it let me know that the little kitten was successfully in a safe shelter.
I’m allergic to cats.
Night is a conundrum. It is meant for both resting and running around. For many, a weekend can be described as a time to let loose and unwind in an otherwise stressful reality. There are several ways to spend one’s night, whether it be rescuing a kitten from the snow or staying up late to write a paper. It can be when you go out with your friends and eat and drink way more then you should. Perhaps it is when you sleep away the week of work you just had in the hopes that, when you wake up, you will feel better than when you fell asleep. The night is a shadowed box of possibilities, lingering around the corner with every sunset and hiding with the sunrise. It is the time in which the owls come out to play and parents kiss their children goodnight. Monsters, after all, are waiting under the bed and the only remedy for monsters is the love of a parent.
My mother’s name is Terry, but we like to call her "The Hammer". It is a title given to her by my father when they first started dating. She was a single mother at the time who had never been to college but had worked her way up to be the manager of a bank. The Hammer was tough in the face of adversity and would do whatever she had to for the sake of others. Much like a comic book superhero, she swoops in and finds a way to save the day. When I first got sick my mother was out of town, and little got done in terms of my care. The second she did arrive, however, every test known to man was suddenly being brought to the surface. No doctor wants to go head to head with The Hammer. Even now, two years later, as my condition gets worse, my mother is there to demand any treatment possible. Together we read books, watch lectures, and do endless research all in the hope of finding some relief for my pain. The Hammer spent over a year trying to get me in to see a pain management specialist, and when the first one refused to help me, she fought to get me into a clinic in Los Angeles that has specialists that understand and are willing to treat my condition. When The Hammer talks to the doctors on my behalf, sometimes she cries for me, because being strong doesn’t mean you don’t feel.
Lying in bed, all I want to do is reach into my body and pick out the broken bits. In the sick person community to which I belong Endometriosis is simply called Endo. This is because it takes up so much of our lives already, and we don’t want to give it the extra breath. It is a disease that no one knows the true cause of. Some say it is hereditary and autoimmune. Others claim it to be a blood disorder. There are 176 million women worldwide who suffer from the disease. Each case is different and many don’t know until they try to have children and can’t. With only a dollar last year given to its research by the government, it is no surprise that there is no cause found, let alone any cure. Endo is the process in which a woman’s body grows lesions mainly in the abdominal area; however, they can also be found on the bladder, kidneys, colon, and in some cases, even the lungs or brain.
There is no cure. It is excruciating, and in severe cases, it is completely debilitating. I’m considered a “complicated” case. This means that I am sicker then I will ever physically appear. That is the trick. Even I cannot see what is inside of me and so sometimes it feels as though I have imagined it all. Then in the brief moments of relief, I realize that what I feel so often isn’t how I’m supposed to.
Maybe if I take more nerve medication I can fall asleep.
Medication is the pharmaceutical playground and women with Endometriosis are the children being pushed off the swings. Treatment options are often limited to hormone injections, birth control pills, and the ever-present pain medications, but the companies still make a huge profit from our pain. Depot Lupron is an injection that goes into the hip of a patient once a month. When giving this medication, it is important to put on a mask, gown, and gloves as the medication can be harmful. Side effects include hot flashes, osteoporosis, nausea, early menopause, etc. The injection without insurance costs $2,000. With insurance, it costs closer to $200. We pay for a medication that is harming my body while helping my pain because it is the only thing that helps even slightly. The problem with medications like Lupron is that they stop working in cases like mine, and sometimes don’t even work at all. So now to try and stay off Norco, an opioid to manage pain, I am on two different nerve medications in combination with the injection.
I wonder if the steroid and pain injections will have a longer needle?
The sun is starting to rise and yet sleep has not come. Perhaps the cat went off to sleep because the meowing has stopped beneath my window. I miss the days when walking through a snowstorm and saving a kitten was a Friday night. There were nights in the fall beneath a sky of clear stars. We’d lie on our backs in the dust of a cornfield and bask in the wonder of it all. How ironic it is to have loved the shadowed moments because they gave way to the light that was otherwise hidden during the day.
Lying in bed like a feverish child, tossing and turning, the light is beginning to snatch up the night. The only flicker of brightness I see from this place in my familiar cocoon is the pixels of my computer screen. Perhaps that is the reality of change, for now, my circumstances hide the beauty of the stars. But, in my memory, I can still see them.
I wonder if I can see the sun.