Most days of the week there are no lights on in my home. On good days I get my work done by the light of the tv and a Blue light filtered laptop. On better days I’ll leave the kitchen light on and work from the dining room. On bad days I navigate my little apartment by the multicolored string of Christmas lights I never took down. They have year round utility for people like me. On worse days I hide under a blanket and close my eyes so that no light can reach me. Light hurts, and it’s best avoided when possible. When I was a kid I remember being afraid of the dark and sleeping with the lights on. These days being in the dark isn’t scary, it’s refreshing. Comforting. Like wrapping up in a fluffy blanket that deadens the rest of the world. There are more of us cave dwellers than you’d think. But to understand people like me you first have to understand my darkness.
When I was 20 I collapsed in my dorm hallway. I couldn’t seem to make my lips form words, my hands and face were numb, one side of my face drooped, and I was shaking uncontrollably in what is now considered a type of seizure. I couldn’t control any part of my body properly. My friends called my parents and an ambulance while I sat on the floor, terrified that I was having a stroke. The ambulance lights felt like a small sun and I wanted to crawl into a hole. Luckily my dad was on the phone and knew that what I was experiencing was a severe migraine. He had seen it before, in my mom.
I was diagnosed with chronic complex hemiplegic migraine with vestibular disturbance and syncope. Eventually a seizure disorder was added to the list, brought on by severe neurological stress caused by my migraines. Lots of doctors told me that as bad as I felt, it would only get worse throughout my life. My memory would fade, my motor skills would slide, my logic may be impaired, and my life as I knew it would change dramatically. My sociable personality and ambition would be curbed by an illness I couldn’t control and a body I didn’t want. And. . . I spiraled. Like many with chronic incurable illnesses, especially at a young age, I simply couldn’t cope with my new reality. I had been a successful and involved student and now I was more worried about getting through a day than I was passing my classes. I was anxious to achieve every goal I had before I really fell into my illness, and I was constantly aware of a loudly ticking clock. I had a youthful body that needed senior citizen care. I couldn’t participate in everything my friends and classmates wanted to do, so I became more isolated. Everything felt like another weight sitting on my chest, and in turn I became profoundly depressed.
Chronic diseases are lifelong. They do not resolve spontaneously, and are rarely cured completely. They are the leading cause of death and disability in the United States. Mental illness often develops alongside chronic and acute illnesses. People with these disorders are much more likely to develop or maintain a mental illness than the general population, and it’s easy to see why. Chronic illness is exhausting. Being in constant pain wears you out and you never expect a reprieve. It’s isolating. Chronic sufferers often live lonely lives by necessity. It’s a significant loss of control–of agency. People living with chronic illness have little control over their bodies, their schedules, the smallest details of their lives depend on forces outside of their control. Sometimes it feels like you’re a puppet who doesn’t get to work the strings. Because these illnesses are rarely cured, feelings of hopelessness are common in chronically ill people, even if their illness is well-managed. As are feelings of worthlessness when you can’t do the things you used to love or be good at. I was a fiercely independent woman who suddenly felt like I couldn’t take care of myself. I felt like a burden, and I was always cancelling plans. I missed my friends and family when I was spending most of my time alone in a dark, silent room, and I know they missed me, too. I hated the dark because I felt suffocated–Like I was trapped in a cell where pain was the only constant and my life was put on hold. My ambitions faded, my dreams were put on the backburner, and I felt myself being increasingly defined by my illness. Who I had been didn’t matter, and who I was was defective.
As I grew into my adulthood, I still struggled with my illness and the mental health issues that go along with it. Every plan canceled made me hate my illness and the person I’d become. I ignored the graduate degree that I knew I wanted because I was sure that I wasn’t capable of finishing. I didn’t want to ask for accommodations at work because that would mean admitting out loud that I have a disability. I wanted to be “normal”–I didn’t want my peers to pity me or see me as incapable. I didn’t want my friends to worry about me. Most importantly, I didn’t want to just be the sick girl. But because I didn’t want to acknowledge my disability, I wasn’t advocating for myself. The bright, fluorescent lights at work drained my energy at all times, even breaks. Doing nothing is hard work when you’re always in pain. The environment I was in contained many of my sensory triggers, and ignoring my needs affected my work. I hated the person I had become, and I hated the life I was living.
For how I broke out of this cycle of pain and depression, I have to give credit to my mother, Ann. My mom had lived with an almost identical illness for decades before I had. I was in awe of how she managed to live what seemed to be a fulfilling life that was shrouded with pain. She had raised two kids and helped raise hundreds of children who were not her own. She completed a masters degree in developmental psychology and was the ideal suburban mom, ferrying my brother and I to practice after practice and as many activities as we could pack in. She worked long hours in a loud sensory environment that triggered her illness for years. She loved her job, shrieking kids and all. It took me until I was a grown woman to understand how she did it.
The trick was, my mom didn’t lie to herself. She called her disability what it was and made no secret of her struggles. Rather than stubbornly refusing to let it change her life as I had tried, she adjusted around her illness. When the lights were too bright, she’d work in the dark–sometimes even laying on the floor. She took time off when she needed it. When it became clear that her 30 year teaching career would not be possible as her illness progressed, she found another way to live a passionate and fulfilling life. She opened her own yoga business and made her schedule work for her. When her cup overflowed, she shared her successes and her trials with others to inspire and uplift them. And when she needed to, she set boundaries. She advocated for herself. She was honest when the depression and anxiety that comes with chronic illness were too much. My mom was managing. More than that, she was living. I was not.
So, I took baby steps. I joined support groups where I became more comfortable telling people about what I was going through. Slowly, I started to use the word disability. I started to reorient my life around my illness in a way I had tried to avoid before. I asked for accommodations at work and was honest about my disorder. My coworkers supported me and never made me feel pitied. The cute second-hand lamps in my apartment became purely decorative and my space evolved and became my home. I began to get used to living in the dark and to see it not as suffocating, but liberating. In the dark I could still live my life most days, migraines or seizures be damned. I could set myself limits for how much work I could do in one sitting, and when I couldn’t do anything but lay in bed I started reminding myself that a day taken in service to myself was not a day wasted. In living in darkness, I no longer mourned the person I was before my illness. I began to celebrate who I am, chronic illness and all. I’m learning to love myself and my limitations, not despite them. My illness doesn’t define me, but for the first time I was able to recognize that it IS a part of who I am and that doesn’t have to be a tragedy. My mother never defined herself by her illness. She walks with it hand in hand, knowing that the warrior she is was forged in part by endless doctors visits and medications. By cancelled plans and missed milestones. By hopelessness and fear and the deep, dark depression that lurks in the corners of every chronic condition. And by the generations of people who paved her way as she paves mine. As I followed her example, I stopped searching for the light and began to love the dark. To all those enduring illness and disability every day: carry on, warrior.
I am not my illness, but my illness is me. I may not get the normal life I expected, but I’m forging my own. There are always going to be days where I hate my condition and I hate who it turns me into, but now I know that I’m never truly alone. Darkness can be oppressive, dull, and hopeless, or it can be pure, calm, and deeply empowering. It’s up to us. As I grow into adulthood, I’m done looking to escape the dark. I’m learning not just to love myself and my disability, I’m learning to thrive in literal and metaphorical darkness.