Mia Mojica shares how she finds freedom from the daily struggle of chronic illness through support networks and creative healing practices.
Everybody learns from their own struggles and others’, so I share my story in hopes that you may learn from mine. I have a unique mix of chronic diseases: narcolepsy with cataplexy, fibromyalgia, and sciatic nerve pain in my low back, hips, and legs. Many say that the first two are incurable, however I believe there is another answer. I believe in freedom. Freedom comes to you when you find what it is that you love, and you do it. It’s there when you spend time with the people you love. Mostly, you feel freedom when you find what it is that you love about yourself, and you do what you need to become more like that.
It has taken me awhile to get there. My biggest daily struggle is getting out of bed. Everything thereafter is a challenge. I recently read “The Spoon Theory” and I can relate. I recommend it to anyone dealing with chronic disease. Though I am highly motivated, I have to fight to find the physical energy to brush my teeth, shower, prepare meals, eat and clean, and the pain can keep me from finishing seemingly easy tasks.
Symptoms began when I was a kid, and they were indescribable. Nobody knew what I was dealing with. My family thought I was depressed because I took it hard when my parents split, but that wasn’t it. Though I looked healthy, I was exhausted all the time. The only moments I felt alive were at the neighborhood swing set. I’d swing as high as I could and dip my head back ’til I was upside down, and pull myself back up to feel the butterflies. Then, I’d jump with just the right timing to fly across the playground. Only the sheer rush of adrenaline could wake me up.
Everything wore me out, especially school. I couldn’t keep up in any team sports. In P.E., while everyone played softball, I sat in a clover patch and made flower necklaces for my friends. It was weird to wake up tired every day. I often told my mom I was sick, but I had to drag myself to school anyway. I wanted to sleep through homeroom, but with all the people around, I zoned out instead. I hid my head in my arms on the desk and cried. I felt ashamed because I didn’t understand that the tears were from fatigue, so I learned to cry silently. I think I hid it well.
Contrary to mainstream belief, many Narcoleptics have trouble falling asleep. Growing up, I lay in bed for hours, willing my brain to turn off. I’d count to 100, then by 2’s, 3’s and 5’s, and start over, counting backwards. When I finally fell asleep, no person or alarm could wake me. I would sleep walk and sleep talk, and my dreams robbed my rest. I always knew I was falling asleep when I’d begin to hallucinate. I would start to float away in wonderful, lazy circles, rising slowly like a ride. I’d hear strange sounds, see moving shapes, then slip into a technicolor lucid dream that would last all night, and I’d remember it when I woke. Some dreams were awesome because I flew through clouds, surfed rainbows, and went anywhere I wanted. The rest were violent nightmares. I ran for my life through bizarre landscapes to escape from ugly, inhuman stalkers. To make it worse, I was completely aware of my dreams so I’d wake myself up… only to find my body paralyzed. For minutes at a time, I’d lie in bed, unable to blink, scream, or even breathe. I had no idea what was happening and thought that I was dying. Many years later, I found out it’s a real thing: a Narcoleptic phenomena called sleep paralysis. So flippin’ scary.
It took a toll on my social life. I had close friends, but group activities wore me out because of my hyperactive dream life. My only coping mechanism at the time was to cry, so my family put me in counseling and I was prescribed antidepressants. I hated both. What finally helped me was working with art and animals. On the weekends I stayed with my dad. He had three dogs, and I enjoyed teaching them tricks. I read every book I could find about the canine species. The rest of my time I spent writing poetry, painting, and learning to use the brand new Internet.
A new symptom manifested when I was 18. I was studying abroad in Germany, washing dishes at home and all of a sudden, my vision spiraled out, my knees buckled and I fell to the ground. I was conscious but everything went black. My body was vibrating, then everything tunneled back in. I was terrified, but I was alone; what could I do? A few days later, it happened again. I hit the ground, blind and buzzing, then life tunneled back in and returned to normal. I’ve experienced it many times since, but have never been able to predict it. I’ve even collapsed when I sneezed, fully cognizant and without tunnel vision. Those episodes were so strange.
I still didn’t know I had Narcolepsy. By this time, I had been diagnosed with depression, anxiety, and obsessive-compulsive disorder. The medications’ side effects were worse than the original fatigue, and I stopped believing any of it was real. I needed a new answer. I was alone in a foreign country, and it was time to advocate for myself. With the Internet in full swing, I got online and saw that others echoed my feelings about the drugs, so I quit taking all of them. Cold turkey. Against all odds, I clawed my way through the potentially deadly withdrawals, and forged ahead with a mission to survive.
Through everything, I always had a huge drive and mental capacity to learn, teach and share. I loved new experiences and traveling. My energy came from being in nature, working with animals, making art and expressing myself. That’s what filled me up. The depression was situational; it came when waves of fatigue and fibromyalgia become so debilitating that I had to limp instead of walk, and I couldn’t make food or clean up after myself. During those times, I lost weight but still looked somewhat healthy so it was frustrating to explain to people who didn’t understand that I was sick.
Awhile after I stopped the meds, life felt more natural. I was studying photography in British Columbia, and I felt very connected to the beautiful environment. For a year, I was healthier than I’d ever been and had a rich social life. I graduated with a Photojournalism certificate, and for the first time ever, I was proud of myself. I thought I could do anything, so I enrolled in a school for dog trainers to continue my studies, when, BAM! The worst of the lucid dreams hit me. They were so lifelike that upon waking, I could not separate them from reality, and I started zoning out again. I drew on my notes to stay awake. I no longer cried, but I slept through 10 alarms every day and fell really behind in school. One day, a girl with multiple sclerosis who worked in the kennel shared her story with me. She found out she had “chronic fatigue” by taking a sleep study. Hearing those words together struck a lightning bolt in my head.
I was 23 when I finally had a sleep study and was diagnosed with Narcolepsy. The sleep specialist said that many people are misdiagnosed with depression before being properly diagnosed, and he prescribed a sleep medication to promote wakefulness that would help tone down or even eliminate the vivid dreams. Finally! A doctor that took me seriously. Within a week, I was up at 6 a.m. daily, in class early and had several new dogs assigned to me for training. It was unbelievable. I started seeing clearly for the first time, and began to realize the impact that I could have on the world around me. My life was changed. I became a certified canine specialist and dog trainer, and tried to begin my working career.
All of my symptoms were clinical and had special names, which validated my years of wondering. My doctor classified the collapsing episodes as cataplexy, plus I had excessive daytime sleepiness (EDS), hypnagogic hallucinations (the floating before falling sleep), sleep paralysis, microsleep, and brain fog. Brain fog, a parallel symptom between Narcolepsy and Fibromyalgia, has been one of the worst. When I talk, I ramble on forever, unable to make my point, or I don’t realize when people get it because I’m stuck in a dizzying maze of words, and can’t even think of a simple one like “car”. The effects of the medication have mellowed out. It still helps me fall asleep, wake up, go places, and carry on conversations, but the brain fog and fatigue make the working world tough. I’ve had a hard time keeping a regular job because of how often I still need to rest, stretch, and sometimes even cry.
My journey was lonely until I met three other people with Narcolepsy at a wellness retreat. They hooked me up with an online support group, and I now have a network of people throughout the U.S. who face similar daily struggles. We provide support and accountability for each other. I encourage those just beginning their own diagnostic journeys to find the things you love the most and do them every day. Be kind to yourself, do what you can and don’t worry about the rest. Paint if you love to paint; sing if you love to sing. Simply do what brings you the most joy, and put yourself in the company of supportive people. No one should have to go it alone.
My number one take away from all of these experiences is how crucial it is to reach out when in need. Every time I do, life gets better. It may not be perfect, but there’s always been a light at the end of the tunnel vision. The more hugs, smiles and laughs I share with others, the healthier and stronger I become. What keeps me going every day is my faith in ultimate grace from a Highest Loving energy source that smiles, listens and cares. I have this faith because I’ve felt the energy myself, and I know it exists because more than once it has saved my life.
For many years, I searched for alternative healing options and have found so many: eating whole foods and practicing mindfulness, yoga, prayer, meditation and expressing creativity! I also discovered the magic of massage and aromatherapy. I’ve combined the practices I love the most into my own healing system that helps me clear the clutter from my mind so I can step into my “Flow”. Lately, I’ve been feeling a strong pull to share my findings with people who are looking for hope. I’d love to open a nonprofit organization; I envision road trips through the States to host creative workshops, and building a creative arts retreat center with organic gardens and beautiful views. Everyone could use a place to discover new ways to heal.
For me, it’s always been about how to stimulate forgiveness, love and joy within the mind, body and soul. Regardless of anything else, I know that following this path will bring me my freedom, because I’ve found the things I love to do, and I’m doing them every day. For those of you who haven’t found it yet, don’t ever give up, because it may be just around the corner.