I was convinced someone was listening to all of my phone calls and my hair loss was a result of poisoned water. I had gone insane, or so it seemed. When I finally pulled out of it, I burned all my notebooks. I stopped writing. I was worried if people read my notes they would think I was crazy….I kept the ideas in my head where they were safe from any questioning. I had just been through a rare lupus attack. Lupus cerebritis, a swelling of the brain caused by almost undetectable inflammation. The truth is I was the one more worried than anyone else about seeming crazy at the time. Everyone else who had been with me through that nightmare of a time understood that there was a medical reason I had begun acting strange that had nothing to do with mental health– it was a reaction to my brain being under fierce attack by my own immune system. That’s what lupus is, a disease born of your own immune system that becomes corrupted. It can’t tell the difference between things like your organs and something it really is supposed to fight to keep you healthy.
I never thought lupus would dare mess with my brain. I was wrong. I began to hear things that were not there. See things no one else could see. I kept trying to book trips to Disneyland and kept a set of packed bags by the door even though there was no vacation planned. Some of the memories are so unbelievable I had to reread parts of my medical file over and over. You see, I had memories from that time but because they were so bad, I convinced myself they had been part of a nightmare or hallucination. I’ve never experienced anything like it before and hope I never will again.
After chemo and aggressive treatment pushed my lupus back into a controllable state I bought a new notebook and picked up where I had left off before I temporarily went mad. I was different before then and afterwards, I was still me.
If there ever was a disease that had the folklore behind it that best fit the magical realism I believed was just plain old reality, lupus is it. The word lupus is Latin for wolf. In times past, people who suddenly got a distinct red rash across their face were believed to have been bitten by a wolf. Stories of witches, ghosts and vampire like creatures that would come into your home while you were sleeping and beat you with a broom across your back or leave purplish welts on your body from trying to suck the life out of you were not dark fairy tales to me. I heard of the stories in the same manner that other children learned which side of the plate the spoon and fork should be placed when they set the table. If a witch was believed to have entered your home, this was the one exception where it was acceptable for even the saints of the family to use curse words. First you could try speaking nicely to the witch and ghosts but if they kept coming back, things got serious fast. Some ghosts or spirits were not harmful, just lost or trying to communicate something important. Dreams needed to be told to certain people if they were bad dreams and others if they were good dreams. Every family had several people who you could call to ask them what they thought a dream meant. You should also make sure to mention if the pets in the home were acting strangely or if there were any birds outside making noise— especially if it was an owl. You didn’t want the dogs to howl too much or an owl ever to visit your house. What makes the song of one bird an omen while another carries hope. I desperately needed hope and welcomed even the owl if there was the smallest of chance he would mistake my home for another and sing a new song. After all, no bird, not even the owl, can know just one song.
I received a my diagnosis of lupus, systemic lupus erythematosus, shortly after having my last child. Like most others afflicted with lupus, joint pain was the symptom that had plagued me the most. I had been bitten by the wolf many times and the puffy bite marks were more a nuisance than anything I took seriously. As a young child, the pain was a constant and resided mostly in my legs and knees back then. Lupus is an autoimmune disease and while there has been an increase in the amount of information on it, causes and prevention are a mystery. A cure may be a reality in the future but not likely in my lifetime. For now, I live with the knowledge that my own body has turned on me. My immune system attacks the healthy tissue in my body. In my case, there was a serious attack launched on all of my organs.
In many ways, lupus accelerated a learning and appreciation that come to some after the loss of a loved one or as part of the aging process. At the time I was angry- alot of the time I was angry. I lost something I thought was fearlessness and I wanted it back. It was the kind some of us get when we are young and think we are immortal or that death is something so far off in the future it doesn’t seem real. There were times when I slipped too far near the border of fatalism. I felt like it was hopeless and there was no use in trying– I was going to die. When you’re in the thick of sickness and haven’t yet developed a strong sense of purpose it’s not a big leap to depression and hopelessness. Yes, we are all going to die. I’m going to die. I’m just not going to live like that’s all there is to it even if today is the day it happens.
An early worry after I received the diagnosis was worrying whether my children could get the disease. Doctors assured me it was not contagious. Whether that fear is unreasonable or not, I still worry– especially about my daughter. We fit the description of people that are likely to develop the disease. Much like the debated nature versus nurture when it comes to questions long asked about what has more influence on the kind of personality or behaviors we display– what causes lupus, genetics or environment? The answer is still largely a guess and my guess is that it’s a combination of the two.
Lupus is more common in women, especially women in what’s referred to as “child bearing years” in almost everything ever written about lupus. Child bearing years is apparently between the ages of 15 and 35– I’m guessing that future literature is going to have to rethink that term as we see families getting started later in life each year. The dangers of lupus to both mother and unborn child are great, especially if one doesn’t know they have lupus. Women with lupus have a higher chance than other women to miscarry or the child to die in the uterus before 9 months.
I’m no stranger to hard times. I’m usually a great source of optimism and encourage others to seek out the bright side. You know those overly positive people that drive you nuts sometimes– that’s me. Lupus changed that for a while. Some days I woke up and felt like I was better off staying in bed. If any of those full of hope optimists happened to show up that day to check on me, they’d be sorry. My doctor picked up on the change and after a few of my responses, he jokingly said it sounded like I wanted to be an ostrich and bury my head in the sand. I looked up at him and said, “Finally, someone who understands me!” I wasn’t kidding or being sarcastic. I told the doctor I needed him to speak to my family and confirm that we were all dying so they would stop worrying about me. He asked what I meant. I told him that we are all dying everyday– skin cells slough off and make their way to skin cell heaven down the drain and wasn’t it true that even most of our hair was really just dead cells. We were dying and I was dying…they just needed to accept it. Dr. Newton continued his exam and I caught him glancing over to my husband and mother who were sitting in the chairs near the exam table. They both lowered their heads. My words hurt them and they sat there in silence. They were not embarrassed at my odd behavior and negative attitude. They were worried. None of us knew at the time that my brain was swelling. It was inflamed and causing me to twitch my fingers at people, say things I would never normally say and most of all, it made me callous and mean. I had long stretches of memory loss. I often wonder how much of it was really due to the lupus and how much of it was of my own doing out of selfishness so I didn’t have to acknowledge how much pain those around me were in too.
Thankfully, I pulled out of it. The physical changes I went through during bad lupus flares were the most obvious part of my experience. Even though there has been an increase in awareness regarding the importance of mental health, there is still such a stigma attached to it. Many people steer clear of discussing it for fear of being labeled weak or crazy. I’m not a doctor or psychologist. I was born into a Mexican family. I don’t speak for all Latinos, Mexicans or people with lupus. I believe staying mentally healthy is just as important as staying physically healthy. Part of that requires it to be part of the discussion. If you or someone you care about has lupus, don’t minimize the importance of mental health. The experience of living with a chronic disease alone is enough to negatively impact how a person feels. Just because something can’t be detected in blood work or an MRI doesn’t mean it doesn’t exist. Keep in mind that some side effects of medical treatment can result in changes in behavior and sense of well being. Prednisone is a common treatment for lupus. It is an effective anti inflammatory and large doses can beat down a lupus flare quickly. The down side is that it can also cause mood swings and difficulty concentrating. The disease itself can also cause symptoms like fatigue, depression, and even neurological problems including psychosis. The brain after all is an organ. Lupus by definition is a disease that causes periodic inflammation of and damage to the joints, tendons, other connective tissues, and organs, including the heart, lungs, blood vessels, brain, kidneys, and skin.
After I received the diagnosis of lupus, a floodgate opened and I suddenly had names for all the things I had been feeling for so long. Osteoporosis, Raynaud’s, hyperthyroidism, Grave’s disease, Sjogren’s, and on and on. The thing is that while the names of what ailed me were new, none of the symptoms were. They were things I had been living with all along. Some had treatments available, some did not. The common denominator was that all of the issues were autoimmune. Knowing what had caused how I felt did give me a sense of relief and control. Prior to the first massive flare I had, I had often wondered if it really was all in my head.
After I found out I had hyperthyroidism, I was scheduled to meet with an endocrinologist. Your thyroid is a small gland found at the base on the front of your neck. It produces hormones that regulate many of your body functions, including metabolism and heart rate. Mine was producing way too much. My endocrinologist was one of the many specialists I would need to see several times a month that year. I received a treatment of radioactive iodine to slow my thyroid down before it caused permanent damage. My body was not playing nice with each other. Parts that needed to be working as a team had went on strike and were taking direction from corrupted signals.
The town I lived in had a population of about 17,000 at the time and was home to some great medical facilities. The specialists I needed to see were about a two hour drive from home. In many ways, the economic toll on a family is parallel to the mental health aspect of lupus– hidden and not discussed. We didn’t have especially reliable cars and had to borrow gas money on many occasions. One of my biggest frustrations was feeling forced to stop. Until I could figure out what was wrong with me and how I could get better, I didn’t work. My dream of graduating from college was also put on hold. There were days I felt like I was a burden on my family. It killed me to see my husband sorting through the piles of bills when he thought I was sleeping. I was going through the cycle of grief– emotional responses and stages that range from denial to acceptance. It’s a cycle so even after reaching the acceptance stages, there is always the chance that something can trigger a visit around the bend. I was mourning the life I felt I had lost.
UV light, from the sun or artificial light can aggravate lupus. In my case it does and this was hard to adjust to. I had never considered the need for sunscreen. We were a family of migrant workers. My father and mother picked oranges and lemons in the fields of California before we settled in the Pacific Northwest for year round work related to all things apple. In the fields, beautiful women would protect their faces from the sun with a handkerchief so only their eyes shown. Our play pen, like many other children in the fields with their parents, was a wooden bin. As my parents finished a row, the field forklift driver would load the bin me and my siblings were in onto his forks and move us to a shaded spot closer to our parents. I can’t even imagine the bewildered look my father would have given me had I ever asked for sunscreen as a child. Being outdoors was a huge part of who I was. I worked outside as much as possible and loved to garden. Early on, in defiance, I would go outside sans protection. My mindset was “I’ll show you!”. I soon accepted that the only thing I was accomplishing was a short lived sense of illogical satisfaction. That feeling was soon replaced by the realization that I was only harming myself and my family– I wanted to get better and they didn’t want to see me sick either. I started wearing large hats and bought more than I ever would need. I proposed moving to England so my new fashion pieces would fit in but couldn’t convince my husband. He supported the hat buying and the bad fake English accent I spoke in when wearing my hats but felt moving to another country was a little extreme. He didn’t get my “I’m the Queen” jokes but laughed anyways.
Life went on. We celebrated birthdays and holidays. We celebrated life. Woe is me was tucked into a corner of my heart. It was an important and necessary part of my journey. I am blessed and have purpose. I’m singing my song and woe isn’t part of the chorus.