Here’s my villain origin story…

I’m a self-taught narcoleptic, disabled artist, based in CT. LOL.

I live a beautiful life working from home, running my own business and making art - but the most beautiful part of living and breathing, is that I get to share this existence with my incredible husband and my three rescue dogs! I’m obsessed with coffee, popcorn and ice cream (not together, ew). I love love love food, movies, and books/graphic novels. I either wear a graphic tee or a graphic dress, either way, there’s always bow in my hair and candy in my dinosaur purse. I’m chubby and nerdy and happy. I know this is pretty unspecific, and I mostly talked about food, buuuut let’s be real, you’re a stranger on the internet and I like being alive.

While we’re on the topic of being alive, let’s discuss. Life is beautiful. It’s precious. People say it ALL THE TIME. but it’s not until you’re faced with the raw, unpredictable, instability of your fragile mortality that you REALLY realize it. How delicate, dim, vibrant, boring, exciting, awful, bleak, incredible it is. The sensation of breath in your lungs is amazing, unless it’s a dog toot. Actually, no, ALL of it is something to be cherished bc hell, I would rather smell the rancid stank of my dog’s toot than be six feet under, ammiright?

In the mess that is life, I found myself facing two different versions of my mortality. 1. What it’s like to accept the news of an illness that has an 80% chance of taking your life and 2. How quickly and unexpetedly the lights can go out - one night, you’re driving to work on NYE while a drunk person is leaving a party. You never even saw their car coming. You just wake up with the dashboard crushing your shins and the taste of airbag powder in your shattered mouth. Soon, the fire department is sawing your car open and cutting your clothes off. Just like that. It could have been over for me. But instead of the end, it was the beginning.

I found art through grief after trauma. Facing your own mortality is rough. Facing the challenges of survival is rougherer. I wish I hadn’t had to experience it more than once.. but the fact that I could survive more than one profound, life-altering occurance that would strip my mental and physical health away from me is pretty dope.

I found art as a way to cope through the war on tumors ravaging my liver… My life began wasting away by the side of the toilet where I was spending most of my time. I used art to cope with the news that, while we were trying to get pregnant, the tumors had made it so I would never be able to carry a baby to term. That women with livers like mine have a 0% survival rate in pregnancy.

I found the peace of brushing paint onto canvas was sweet and stilled my existential anxieties.. Painting was my therapist, my joy.

But when I was in a car accident, I succumbed to serious spinal injuries and, well, the worst loss of all - the use of my hands. I couldn’t hold a pencil or paint brush. Without my art, how could I possibly survive this profound grief?

The answer is as old as time: Love. True, soul-bonded, molecular-level LOVE. Or whatever.

If it hadn’t been for my husband, the most kind, giving and patient love of my life, who helped wash and brush my hair, cut my food when I couldn’t hold a knife, get dressed, tie my shoes - all the physical things, as well as never missing a doctor’s appointment (for 8 years!!), encouraging me to focus on myself and not worry about the rest (the financial cost, the burden I felt I was when I couldn’t contribute to housekeeping or couldn’t travel in a car for more than a few minutes without extreme pain), I don’t know that I could’ve survived the tremendous grief of processing, not only my fragile mortality, but all that I had lost... My independence, motherhood (and stealing his fatherhood), my art, my job, and surprisingly, most of my friends (the real ones that stayed are absolute UNICORNS)

The only thing he EVER asked of me was to survive. To keep. f*@king. going. New obstacle = new plan. He never lost his optimism. He built and customized a life to help encourage and foster my growth and success. He spent every waking moment thinking of new ways to help me, to help *US*, not just survive, but THRIVE. And we did!

With a lot of resilience, perseverance and teamwork, I have regained about 85% of my independence. With the help of my beloved neurologist (sup, Dr. Tseng!), medical-massage therapist (Jacki, my queen!), acupuncturist (Kiiiiim!!!), my NeuroNerd mentalheath crusader and lifeline, Joe Borges (you jerk), Ellen Ronka, who brought Pain Reprossing Therapy into my life and very VERY much especially my parents and sister-in-law who helped with cooking, housework/endless home repairs, driving me to procedures and listening to me gripe and watching me languish… This tribe… all of whom gave me unconditional love…. and because all of these people who never gave up their dogged pursuit of returning my mobility and finding me a better quality of life, I went from walker, to cane (and have even needed a wheelchair on occasion), to now only needing a cane on unsteady terrain or longer distances. I can usually walk by myself, without a mobility aid!! It’s fan-freaking-tastic. Yes. I still have days where I’m bedridden and can’t walk without my walker. But at least it’s days and not weeks or months like it used to be.

And yes, on top of that is dealing with Narcolepsy and Cataplexy…. not only did I have to fight for my rehabilitation, but I had to fight for it against the dragging undercurrent of constant, breath-taking exhaustion that narcolepsy consistently sweeps into my life at increasing rates. Overcoming it all felt impossible at times.

But we did it.

I can use my hands for most things! With frequent breaks and stretching, I can hold pencils, paintbrushes and utensils with ease. I can bathe myself, dress myself, groom myself. I often need help opening jars and ginger beer but who cares! And yes, I have days I can’t feel my hands and panic sets in. My parents still come to help around the house and I haven’t been able to really travel back to my hometown in many years… But I will never, for a second, take for granted the progress I have made.. I have also found art through tape, which allows me to create on days my hands are weak - see the section for more!

A positive mindset and a dash of tenacity is the key to long term recovery. I wasn’t supposed to survive, but I did. TWICE. Nice try, death! Nice try.

Experiencing near-death forces you to a crossroads: To begin fulfilling your life or settling for it. To make choices that benefit you and your family, that support forward momentum, that foster true happiness.

Surviving death isn’t always enough.

You have to decide what you do

with the time that is given to you.