Nicole Meza |
“I was supposed to be having the time of my life.”
– Sylvia Plath, The Bell Jar
The other night I dreamt of Death. He was tall and lean, very handsome, with coal black hair. He looked just like Keanu Reeves, don’t ask me why, but I wasn’t complaining. We were standing on top of a sullen rocky cliff while the sky was filled with only hues of dark blues and greys. Death and I shared a glass of white wine together, a pleasure I am not supposed to partake in due to my illness. As we sipped and looked on at the empty horizon, he began to speak. With emptiness in his eyes he said, “you will die from your lupus, you know that don’t you?” His words were quite sharp with no pity or kindness. “You will die from your lupus,” he repeated, “your organs will fail, one by one, shutting down and decaying. Your lungs, your kidneys, your heart, your brain, your liver…your spine will crumble beneath the weight of your own breaths and your joints will burn with every movement. Your eyes will grow heavy with fatigue, unable to stay open. Your blood will become poison…you will die slowly. Your lupus will kill you.” The air suddenly became thin and the wine horridly acrid. I was frozen for what felt like years and then suddenly, I awakened in my bed to the sunlight in my room. I reached up to feel tears on my face and cheeks. I was surprised that I had not cried in my dream, but my body instinctively cried in real life. Was the fear of death so inherently carved into me? Or was it the fear of sickness? Or maybe it was the fear of the uncertainty that at any moment I would be back with the sickness…in the dark silence, at that sullen rocky cliff, staring at those dark blues and greys, with faux Keanu Reeves telling me that there was no other way but to be with the sickness until I was finally dead. The dream lingered inside of me. It had stayed with me throughout the day. The idea of and the memories of sickness wrapped around me, reminded me, haunted me, and terrified me.
The sickness has been with me since I was a child, but I didn’t know it for a long time. There had always been an innate sense of feeling “wrong” dwelling within me, but I just couldn’t put my finger on it. Neither could doctors. That was both a relieving and an unnerving feeling, because you want to trust that doctors are absolutely sure when making diagnoses. So, when doctors tell you that you are fine, you feel relieved but then that “wrong” feeling is still there, and it never quite goes away even though Mr. big MD says it shouldn’t be there and it’s all in your silly little lady brain. It can make you feel quite worried. But doctors are human, and all humans make errors. Error is natural. It is built into us after all. If it wasn’t, we wouldn’t get sick.
I wasn’t diagnosed until I was eighteen years old. In the beginning I went through a discovery phase where I needed to know everything about the systemic lupus diagnosis. Lupus is essentially an overactive immune system. It is so active that it doesn’t know what else to do but attack the body. A comical situation to be in when you really think about it. Your own body cannot even recognize you as you are. I needed to know how this sickness functioned, why it functioned the way it did, where it could spread to and had already spread to, how it works genetically, and why it was happening to me. There was too much ambiguity and variation in the diagnosis though. No two people had the same symptoms. Every person with lupus is their own unique little snowflake of bodily mutiny. This made things complicated for me because it required me to “learn-as-I-go” my own brand of sickness.
My first ever rheumatologist, who gave me my official diagnosis, was very blunt about it. He was an old fat man who looked like Santa Klaus, though he didn’t smile at me much at all. There wasn’t anything happy about, and he wasn’t about to give me the wrong idea about it. It must have taken at least a dozen different blood draws for my lupus to finally tell the truth for once. Yes, my lupus is a liar. It likes to lie especially on blood work. My lupus must be tested constantly or else you’ll never know the truth. Doctors can test to see which autoimmune diseases you have, and my lupus sometimes likes to make the whole list light up like a Christmas tree. Sometimes it likes to make it seem like I am not even sick at all. When my diagnosis was finally confirmed and settled, Dr. K asked me if I was scared. He told me straight that it wasn’t the nice kind, it wasn’t the fun kind, it wasn’t the skin kind, the drug kind, or the mild kind. It was the big one, the bad one, the organ one. The kind you don’t want. He said he would understand if I was scared. I remember his voice and his words so clearly. “I will be surprised if you don’t have a cane by twenty-one from the way yours is progressing.” Jokes on Dr. K though, I made it to twenty-seven by the time I really needed one.
Unfortunately, my lupus thinks it would be hilarious to affect many organs at once, but not show it on any of the blood tests. So, to find out what was wrong, I had to get all the tests! It really was a pain in the beginning because we had to narrow down exactly which organs my lupus favored. I had scans and ultrasounds done on my kidneys, bladder, liver, and heart. I had lung tests done to see if there was any damage there. They made me run on a treadmill; I will never forgive them for that. I had a cardiologist, endocrinologist, a pain specialist, rheumatologist, urologist, neurologist, and a nephrologist. Who am I kidding, I still have those doctors to this very day. It is a necessity to have them to survive. I get my organs checked regularly still, though the visits are now farther in between and there is no treadmill, thankfully. We have figured out my lupus loves my heart, my lungs, my liver, my thyroid, my brain, and especially my kidneys. There is damage in all those places. Scarring, irregularities, tumors, swelling, bleeding, and the leaking of essentials like proteins.
I was shuffled from rheumatologist to rheumatologist after Dr. K left the practice and moved back to the North Pole. I finally met Dr. F roughly around the age of twenty-three, and he is my current doctor. I adore the funky little man dearly; Dr. F is a brilliant doctor and person. He put me on a stable regimen of hydroxychloroquine, which is an anti-malarial drug used as an immunosuppressant, and methotrexate, a mild dosage of a chemotherapy immunosuppressant. Both medications suppress the immune system so that lupus relaxes the heck out instead of attacking everything in my body. The medications worked extremely well for the first few years. Once on them, my lupus symptoms practically vanished. No longer did I have rashes, frequent fevers, migraines, joint pains, fatigue, or serious organ issues. The bleeding in my kidneys came to a rapid halt and my mind wasn’t fogged with confusion. My school and work life improved and I began to feel like I could have a successful functioning future. These medications came with their own pros and cons though. I’m not allowed to drink, I might get nausea, vomiting, mild hair loss, stomach ulcers, anxiety, diarrhea, liver damage, dizziness, and muscle weakness but I get to live.
For a long time, I did not want to admit that the medication had stopped working as well as it should have been. As the years went on, the effectiveness began to fade. Sometimes I lie to myself. If I admit that my life saving medication isn’t working, then I would have to admit there is a life damaging problem. I was betting on my lupus lying for me, and I was hoping that I could just…push through my symptoms at the time. I could get through anything if I just tried hard enough, right? Wrong! My twenty-seventh year was the hardest. I still remember the fall, no, more like the collapse. On Friday, March 11th of 2022 sometime around 11:30 PM, I collapsed hard onto the floor of my bathroom and bruised my knees. My palms hit the floor and my body thumped hard onto the tile. My spine gave out. I was alone. I was scared. I was unaware of what was happening to me. The weight of my spine pressed downwards onto two discs L4 to L5 and S1 to S2. I had to crawl and claw my way into my bedroom from my bathroom to get to my cell phone to call an ambulance. The two discs in my lower back pushed inwards, which pressed onto the nerves in my spine causing complete searing numbness in my hips and right leg. My spinal canal had also narrowed, causing the nerves and both muscles in my back to spasm. These two things are called disc herniation and spinal stenosis. It is rare for it to happen to someone in their twenties, or so I am told. My lupus, if not anything, is persistent. I had no idea lupus could do something like this, but apparently lupus is such an asshole that it can even affect your bones, not just the organs. After the MRI was done, the hospital nurses treated me like a tragic withering flower. The neurosurgeon on duty relayed to me with sadness that I had the spine of an eighty-year-old man, that surgery may become inevitable, and that I needed to begin physical therapy which I would have to do for the rest of my life as soon as possible.
I couldn’t begin to tell you the number of times I vomited because of the injury. I was often asked to rate my pain on a scale of one to ten, what does it feel like, burning or throbbing, poking, or prodding, etc. The pain was more like vines. Vines with thick thorns that wrapped and stabbed around into my legs and back, reached into my private regions, penetrated me, violated me, poisoned me, and spread that poison pain throughout me. The vines wouldn’t allow me to urinate or defecate, wouldn’t allow me to shift or move. I couldn’t move my arms or my legs or else the thorns would dig in further. The vines wouldn’t allow me to even breathe in deeply. Every breath was painful. It was constant. The movement made me nauseous. The pain was so strong that I would vomit if I shifted too much. I had to force myself to pee. When nurses lifted me to wipe me, I vomited. I was stuck in a fetal position for two weeks. I couldn’t shower or brush my hair. I was in so much pain I couldn’t even cry. I was too scared to cry because movement meant vomiting and vomiting meant movement. Movement meant pain. I was wide awake in pain always. I couldn’t sleep, I wouldn’t sleep. What if I moved in my sleep?
After two weeks, I began to feel brave enough to shift around a bit. I learned that I could move a little bit, just not a lot. I was slowly beginning to straighten out my legs, roll over on my back, and outstretch my arms. I wanted so badly to stretch out my legs, to stand up, and to walk to the bathroom. I craved freedom. I craved it carnally and with jealousy. I stared and watched others who, with their vile ungratefulness, were able to walk, bend, stand, and lift objects with ease. At times I said I was starting to feel better when I was obviously not. I felt an invisible expectation and pressure from hospital staff to improve, but it might have just been my own imaginary phantoms urging me to get better quicker than humanely possible. When nurses saw this “progress” though, they began trying to get me to try to sit up. Every day they would attempt to move me, sit me up, and try to leave me sitting for at least a full minute. I didn’t think I was a beggar, but I begged. I begged and vomited. I begged them to stop. Even though your stomach is empty, there is always more to vomit up, I learned. When I was finally discharged, still unable to stand, bend, walk, or sit, I was given orders to do at home physical therapy, occupational therapy, and eventually out-patient physical therapy. I was given a walker, canes, a shower chair, practice steps, and a grabber to pick things up with. They said usually it takes about six months for someone with a disc herniation to heal, but well, with my case…it’s different.
Lupus makes everything just a little harder. It takes longer for someone with an autoimmune disease to heal. For me, it takes maybe twice as long. I used my walker religiously, eventually I used my canes religiously, and now I walk on only two legs. I still use my walker on bad days if I am being honest. I use my shower chair because I cannot stand in the shower by myself anymore, I get nauseous, and the nausea scares me. I need to stretch properly and do my physical therapy exercises every morning before getting out of bed because I could reinjure my back again. Muscle relaxers, nerve pain medication, and pain medication are necessary unfortunately. I tried to experiment, with my pain specialist’s permission, to see if I could go without. I cannot. Without muscle relaxers, my back muscles go back into painful spasms. Without the nerve pain medication, the nerves in my back, hips, and down my right leg will once again become an unbearable searing numbness. Without the pain medication…I cannot sit for longer than a couple hours. It took me a full year to walk without a walker or cane. It took me even longer to sit. I don’t know how long it’ll take me to do anything else. I am too scared of the movement still. I am too scared of the nausea.
There is this glaring uncertainty in my health that makes it so frightening to me. When will the sickness happen again? Will I fall once more, hitting my knees on the ground, my palms catching my weight? Will my next lover hold me only to be too scared that their embrace might break me? Could any movement shatter me? Can I afford more hospital bills? Will my mom be able to handle seeing me in another hospital gown? Will anyone visit me? Will no one visit me? Will my organs fail slowly one by one like Death said? My lungs, my kidneys, my brain, my heart, my liver, my spine crumbling, my eyes filling with fatigue, my blood becoming poison? Will I truly die slowly? At any moment…any time…anywhere I could be back with the sickness. Is there really no other way? I’ve never believed in fate or destiny, or predetermined things. I’m not a believer in karma or manifestation, or anything like that. I might just be afraid of hope. I am definitely afraid of this uncertainty and not knowing what is coming next. I just want a choice in the matter, but I don’t know. I am not sure when the sickness will find me again or where I will be when it finds me or how it will impact me, I just know it will.